“Acceptance of what has happened is the first step to overcoming the consequences of any misfortune.” ~William James
Two-years ago around this time I was diagnosed with Stage-4 Liver Cirrhosis initially diagnosed due to Budd Chiari and Factor V Leiden and told I needed a liver transplant in the next few months if I was going to survive. Shortly after getting a transplant by the skin of my teeth, I barely escaped with my life again as I battled a rare and extremely fatal fungal infection in my brain called “Aspergillus Fumigatus.”
Let me give you a little background information. I was living in Greenville, SC at the time when I first got this news that I needed a liver transplant to survive. There are no transplant centers in Greenville, so it was looking like I was going to have move near a transplant hospital. I guess you could say, “luckily” for me, I was already packed, because I was in the midst of packing to move to Florida for a new career. What I did not know, was that my fate would point me back up to the Northeast, to Connecticut, where my life began, and might unfortunately end, if I didn’t get a transplant, soon.
My liver was accidentally “nicked” during my liver biopsy which went undiscovered until I collapsed on the floor one night in an attempt to go to the restroom. I almost bled to death from substantial amounts of internal bleeding, followed by four episodes of cardiac arrest; things were not looking too good at all. Miraculously, my doctors were able to stabilize me without being invasive and officially get me on the transplant list. Within two days of officially getting on “The List”, I officially received the greatest miracle of all, a second chance at life!
Shortly after my transplant, I exhibited some serious cognitive dysfunction. I was in-and-out of a “coma-like” state, and other times I was only able to say “yes ma’am” repeatedly over-and-over again. I began experiencing painful and distracting visual sensations, such as: colorful lights flashing, hearing voices, and a headache so bad, I would trade it for the worst migraine you think you’ve ever had, any day. I mentally checked-out for several days to one day awake to the comment, “You had brain surgery!” Excuse me? What did you say? “You had brain surgery!” I palmed the back of my head, and sure-enough, there was a line of staples going down the middle of my scalp. There was absolutely no other thought in my head at the time except, you’ve got to be effin’ kidding me?
Not even three-weeks after barely squeaking away with my life with a last-minute liver transplant, and now they’re telling me I had brain surgery? What for?I wondered. Well those headaches, flashing lights, and voices were being caused by a rare fungal-infection that had manifested in my brain somehow since first being on immunosuppression in Greenville.
It is unfathomable to express everything going on inside my head (literally and figuratively) at this time, but I couldn’t focus on any of that. My brain surgeon at Yale, Dr. Matouk, was unable to get all of the infection out in the first shot because there was great fear of leaving me completely blind, paralyzed, or possibly killing me due to its location in my brain. This monster of a fungal-infection had a name, and it was called aspergillus fumigatus; all I knew is that the aspergillus had to get-going, or it was going to be me that would be going….and never returning.
The following week I was hooked-up to an IV of this antifungal medication called Amphotericin B for six or more hours per night. Amphotericin B is highly toxic and it’s side-effects are what I would imagine are somewhat similar to chemotherapy; god-awful. Ampho wreaks havoc both internally and externally to the point where my various medical teams had to come to a consensus as to whether my body could tolerate the medication any longer before it would cause my kidneys to fail; yet, I needed enough of the medication to zap the fungal infection in brain or that’s another (even worse) kind of trouble we’d be dealing with. A week following the Ampho treatment, my MRI showed no improvement in terminating the remainder of the infection, therefore, a second craniotomy was immediately scheduled. Brain surgery numero dos went down on June 11, 2012, but whether I would make it out of surgery alive and not paralyzed or completely blind, was something no one could answer.
When I came back to consciousness the next day, there were doctors and family standing all-around me. “What is your name?” I was asked to write. My Aunt Caryn told me that my neurosurgeon thought there was an issue with me when I wrote down “Mo” because he only knew me by Monique. He asked me to read something from across the room and write it down, so I did, without any problems. My Aunt Caryn recalls him almost falling over in disbelief and excitement that I could read. Next, my sister asked me her name and I wrote down, “Punkass” a nickname I have loved calling her since she was a teenager, (that she doesn’t appreciate as much as I do J). Hey, well at least they knew they didn’t cut out my sense of humor during surgery!
Flash forward to 20 months later, which happened to be yesterday, March 13, 2014. I am the polar-opposite of a “morning person,” but at 6:15 am yesterday I flew out of bed, hopped in the shower, and excitedly got ready to head to Yale-New Haven for my three doctor’s appointments. You’re probably thinking, wait you got excited to go to a doctor’s appointment? Well when are taking this medication that consists of 12 pills/day, costs $4400/month, and makes you really sensitive to the sun and light, you would thrilled to go to your doctor if you thought he was taking you off of that medication today, wouldn’t you?
Following my Transplant Dermatology appointment and MRI of my brain. I met with Dr. Topal, my Infectious Disease doctor. Dr. Topal, reviewed by MRI of my brain with me, and just as I had anticipated, I can come off of the Voriconazole (anti-fungal for my brain infection). As long as the Aspergillus doesn’t come back, I will not have to take it, but the next three months they are going to watch me very carefully hoping it doesn’t come back. The thing about fungus is it usually grows very slowly, but because I’m on medication to weaken my immune system (so I don’t reject my transplanted liver), I can get ill and catch diseases that “normal” people’s immune systems can usually fend-off quite easily. The Voriconazole increased the potency of my anti-rejection drugs, so now that I am getting off the Vori, my doctors will be increasing my anti-rejection meds, which means my immune system will be weaker, and the risk of the aspergillus (if it is microscopically still present in my body at all) can try to attack my brain again.
That sounds pretty serious, but I’m not scared at all. This June will be two-years since I survived my brain surgeries to remove the aspergillus. People have brain surgeries every day across the world, but for a transplant patient to have brain surgery, twice, to remove aspergillus fumigatus, which has almost a 100% mortality rate in transplant patients, is unbelievable. Not to mention, just three very short weeks after battling for my life and having a new organ transplanted into my body, there is no other word for it besides it is a miracle!
I am so blessed to be a miracle, but it is not because of what I did, it is because I have the most incredible medical team constantly looking out for my well-being, the most wonderful friends and family constantly motivating me with their love and encouragement to do great things, and finally, because I have embraced a belief system that anything in the world is possible if you set your mind to it. My mind is set on achieving these great-big dreams of mine, like winning the Gold Medal in Golf at the Transplant Games of America and being on the Ellen DeGeneres Show to raise awareness about organ/tissue donation. I know I am a miracle, and I am beyond thankful to have been given this gift of life, and a chance to change my life for the better and inspire others along the way.
One thing I want you know is that you don’t have to have a liver transplant or have a huge hole in your head to do great things in your life. For me, it took me as sick I became to finally listen to that voice inside my head telling me take care of myself, and not just my body, but my mind, and my soul as well. If I didn’t get sick, I probably would have never changed my ways. The matter of the fact is, getting sick and being on my death-bed was the eye-opener I needed to make the changes I needed to make in myself so that I could be the best person that I can possibly be and reach my highest potential in life.
In result of my experiences, I have been given a story, a story in which I share in hopes to invigorate your childhood dreams, inspire you to make choices that fulfil your inner passions, and to believe that you are indeed capable of doing anything in life that you so desire. My sickness wasn’t a curse; it was a blessing in disguise. It saved me from own worst enemy: myself. I hope to make you guys proud as my journey continues, but most importantly I am on the path to make myself proud, a self that had been lost for years, but is finally found 🙂
“If you don’t get lost, there’s a chance you may never be found.” ~Unknown
“It’s our challenges and obstacles that give us layers of depth and make us interesting. Are they fun they happen? No. But they are what makes us unique. And that’s what I know for sure….I think.”~ Ellen DeGeneres
Yesterday at our COPE (Community Outreach for Purpose & Empowerment) meeting, we had a wonderful guest speaker, Ellen Boyle. Ellen has endured some hardships throughout her life, but you would never know it as she radiates strength, determination, and happiness. One of the things that stuck in my head from her speech was when she our group members, “What makes your heart sing?”
As she called upon me, I fumbled my words, not knowing the true answer to that question. I mean…I enjoy many things: golf, working out, writing, Justin Timberlake, but I didn’t think any of those things were the answer to her question, she was looking for something much deeper, as was I.
Ellen went around the room repeatedly kept saying, “Don’t die with the music in you. Don’t die with the music in you.” This quote from Wayne Dyer immediately opened my eyes as to what Ellen was hoping we would tap-into ourselves.
Maybe you, like myself, in your mid-20’s had that moment when you thought, “What am I doing with my life? What is my purpose? Is this it for the rest of my life?” If you’re like me, you realize you are fortunate to have food and shelter everyday, as there are many people who do not share your same privileges: Yet, something is missing. There is a void and you want more. But what, what is it that I’m searching for?
Ellen nailed it. Don’t die with the music in you, but rather, share your music, and make a difference in someone else’s life. Whether you accept to recognize it or not, we are all talented human-beings in one-way or another. Go out and make a difference in someone else’s life every, single, day. It doesn’t have to be a big favor or gesture, it can be simple, like: saying “hi” to a stranger, making dinner for your busy roommate/spouse, or giving a nice big-fat hug to that person who hasn’t smiled in days. Do SOMETHING to make a difference in someone else’s life and you will begin to notice that “void” you were once trying to fill, is now overflowing with love and gratitude. Then, not only have you filled your own empty void, but more importantly, you will also make someone else’s day a little bit brighter; and that my friends, is what will make your heart sing.
Speaking of “Ellen”, and making someone else’s day a little brighter, Ellen DeGeneres is notorious for putting a smile on people’s faces across the world! For that reason, she is one of my idols, and like both Ellens, I want to make a difference in the world.
It is my ultimate goal to get on The Ellen DeGeneres Show, to not only meet my idol, but to raise awareness about an organization I genuinely support: Donate Life.
After receiving a miraculous liver transplant and surviving two risky brain surgeries that have an almost non-existent survival rate, I know what it truly means to be given a second chance. My body wasn’t the only one that got a second chance; my soul was completely rejuvenated, as well. I am so grateful for this opportunity to have a fresh start and to make a difference, not only in my life, but in the lives of many others. As a recipient of a life-saving transplant, it is my responsibility to raise awareness about the importance of becoming a registered organ/tissue donor.
April is National Donate Life Awareness Month, and I think there is no better time to get on The Ellen Show than in April, but I need all of the help that I can get, so dearest friends, family, and acquaintances, I ask you to share this with your fellow peers in hopes to somehow get my story in the hands of Ellen DeGeneres.
As we talked about earlier, what makes the heart sing is making a difference in someone’s life. Ellen DeGeneres’ sincere acts of kindness have made a difference in my life, as well as millions of lives across the globe. I’d like to have a chance to be on the Ellen show and share my story to raise awareness about organ/tissue donation, so that one day I can help save the lives of others, just like mine was saved by a heroic organ donor. The greatest gift you can give, is the gift of life. Give someone life, and register to be a future organ donor today.
Thanks Ellen for being an inspiration to me and millions of others, and I hope to meet you soon!
“Sometimes you can’t see yourself clearly, until you see yourself through the eyes of others.” ~Ellen DeGeneres
As you may already know, I belong to the internationally recognized club, Toastmasters. From speech #4, “How to Say It’, here is my fifth speech, “Lessons Learned in the ICU” given on February 5, 2013. For more info on our club, please go tohttp://www.westconntoastmasters.org.
“The greatest wealth is health.” ~Virgil, Ancient Roman Poet
Good evening Mr. Toastmaster, fellow Toastmasters and honored guests.
As many of you already know, in May of 2012 I was fatally ill; I spent a total of 71 days in the hospital or ICU. I survived a life-saving liver transplant, and two life-saving brain surgeries to remove a fatal fungal infection in my brain, called invasive aspergillosis. While spending as much time in the ICU as I did is not something that I wish upon anybody, I did learn three very valuable life lessons from my experiences in the ICU that I’d like to share with you tonight.
The first lesson I learned in the ICU, is that you might not always be able to change your circumstances, but you can always change your attitude, and a positive attitude almost always preserves over a negative attitude. When you are as sick as I was in the ICU, you can’t always take care of yourself, and when you can’t take care of yourself, that means someone else has to. Initially, it made me feel uncomfortable to have all of the nurses and doctors poking and prodding at every nook and cranny of my body. One time in the ICU, I was with my aunt Caryn, and cupping one side over my mouth with my hand I leaned over and whispered to her, “Aunt Caryn, I’m embarrassed they have to wipe my butt.” Aunt Caryn started laughing. I was shocked! “Are you seriously laughing? I just told you that I’m embarrassed about them wiping my butt, and you’re laughing?!” While chuckling she responded, “If it makes you feel any better, you will be wiping mine in 20 years!” At this time we both started laughing uncontrollably! While I was humiliated at first by my lack of privacy, it was something that had to be done for my greater well-being. By being surrounded by my hilarious family, I was able to laugh and make light of the very heavy situation going on, which made things appear to not be as severe as they actually were. Instead of dwelling on all of the negative that surrounded me, I was able to focus on positive energy, and I think that played a huge part in my survival.
The second lesson I learned while being sick in the ICU, is that life really is about the “little things.” I learned that we should learn to appreciate the “little things” while we are fortunate to have them, because you just never know when they will no longer be available to you. When I was in the ICU, there were many things I couldn’t do on my own. I couldn’t walk on my own, shower on my own; at times I couldn’t even breathe on my own. I was also restricted on what I could and couldn’t eat, and sometimes I couldn’t eat or drink at all. When I was discharged from the hospital, I was instructed no restaurants, no movie theaters, and no shopping malls for six months. This meant no Cheesecake Factory, no Loews to catch a movie, and no Target for six months. I am on a life-time restriction of no gluten, no alcohol, no sushi, no salad bars, and, as of now, no driving. I guess that means no more driving to Ruby Tuesday and hitting up the salad bar before the 6:00 showing of “Lone Survivor” and then driving my friends to go grab an ice cold beer and some sushi after the movie. I was restricted from common, day-to-day things that we don’t even think twice about; we just do them. My entire lifestyle has had to change, and I didn’t realize how important some of the “little things” were to me until now, that I can no longer enjoy them. I wish I had appreciated these “little things” that I was so privileged to experience and enjoy before my illnesses.
The third and final lesson I have learned from my time in the ICU, is that your family is the most important thing you have in your life. Being sick is a burden. There’s no way to say it besides it “sucks”. It sucks for you and it sucks for anyone around you, because as I mentioned before, when you can no longer take care of yourself, that means someone else has to. While I was sick in the ICU, I learned that some people just couldn’t be bothered. Those same people who couldn’t be bothered, are sometimes the people you needed the most. My sickness brought out the best in some people, and it also brought out the absolute worst in others. I’m only going to talk about the best though. One of the best things that could have happened to me is when my aunt Caryn and cousin Rocco got on a plane, flew down to SC, picked me up and drove me up here to Connecticut. One week later I was admitted to Yale receiving the best medical attention I could receive. Without a doubt in my mind, I wouldn’t be alive today if it wasn’t for my aunt Caryn and cousin Rocco coming to get me and bring me closer to some of the most reputable medical facilities in the country. I learned family is something you should never take for granted. When all else fails, for me it was my health, my vision, my strength, and my hope, I always had my family. Because of my family’s love and support, I was able to get my strength, my health, and my hope back and I am making a fantastic recovery, despite the horrific odds against me!
After being ill, I have learned that no matter what circumstances you are given in life, a positive attitude almost always perseveres over a negative attitude. I have learned that life really is about all of the “little things,” and that your family are the most important people in your life, and with their love and support you can rise above any challenges or adversity that you are faced. I will leave you with this:
“Some lessons can’t be taught; they simply have to be learned.” ~Jodi Picoult
“If you think you can do a thing, or you think you can’t do a thing, you’re right.” ~Henry Ford, American Industrialist, Founder of Ford Motor Company
If you are a follower of mine, you probably already know that 20 months ago after my miraculous liver transplant and two brain surgeries, I lost about half of my visual field out of both of my eyes. There is a fancy name for this symmetrical cut in the right hemisphere of both of my eyes, and it is called Homonymous Hemianopia (HH for short).
Upon being officially diagnosed with HH back in July of 2012, I soon realized I was going to have a difficult road ahead of me. Dr. Walsh, my neuro-ophthalmologist at Yale-New Haven Hospital, was one of the first people to tell me that I wasn’t going to be able to drive, and he said probably never again. I was initially having some issues with bumping into people and the occasional wall, table, and counter when I lost my visual field. I had quickly learned to adapt by turning my head, scanning more effectively, and by simply walking more carefully. I had assumed my vision would come back once some time passed after my surgeries and my medications were lowered, but my assumptions were apparently on the very optimistic side. I was unaware that patients diagnosed with HH hardly never see significant improvement in their visual field, and will most likely never have their vision fully restored.
The British Journal of Ophthalmology contains an article called, “Can Visual Function be Restored in Patients with Homonymous Hemianopia?” An excerpt from the article reads,
“Regarding field defects of vascular origin, the prognosis for spontaneous recovery is poor. Any recovery of a complete hemianopia occurs in the first 10 days after which further recovery is unlikely. Recovery of a partial defect is usually maximal within the first 48 hours. Less than 10% of patients recover their full field, and a proportion of these will, nevertheless, continue to complain about their visual function because of coexisting parietal lobe involvement. Up to 50% show spontaneous regression of varying degrees. The pattern of recovery largely depends on the extent of cerebral damage that is reversible and this, in turn, relies on the state of the collateral circulation. Further recovery is negligible after 10–12 weeks. The extent of visual recovery correlates negatively with age, a history of diabetes or hypertension, and the presence of cognitive, language, or memory impairment. Vision returns to the perimetrically blind field in definite temporal stages starting with the perception of light, motion, form, colour and, finally, stereognosis. Traumatic hemianopia behaves somewhat differently. Large areas of the visual field frequently recover, although the functions regained are unstable and often limited to the perception of light. The body of evidence would therefore suggest hemianopia is not always an absolute and permanent visual loss. This raises the question as to whether the natural course of a hemianopia can be advantageously manipulated by therapeutic intervention.”
The first three months passed after my diagnosis–no improvement; then six months, then a year, and still, nothing. I would be lying if I said I hadn’t become somewhat discouraged that my vision didn’t start coming back after about six months, I so desperately needed even the slightest sign to keep my hope afloat.
I was 27 years old at the time when I first told I would never be able to drive again. This was completely self-defeating to hear. I never realized how crucial driving had become to my everyday life. Once I was discharged from the hospital I was quick to learn that my independence and freedom relied heavily on getting around on my own. When I no longer had the luxury of hopping in my Kia Sportage and driving off, I searched for my next viable option.
What about public transportation? The public transportation offered in Danbury, CT isn’t accessible from where I live. I can’t walk to or from a bus safely in a decent amount of time from where I live either. But you’re on Disability, can’t Disability help you? The SweetHart bus–public transportation offered to disabled people, great! I was approved, and taken to one appointment. I tried to call again the following week for another appointment. I was calling nine days prior to the appointment inquiring a ride. I was told there were “no available drivers” and to call the next day to see if there was a cancellation. I called for the next four days, and still the SweetHart company had no openings to take me to my therapy appointment.
I called the SweetHart bus another time, on a Friday, to see if I could get a ride to the mall. The lady on the phone from the SweetHart company informed me, (with an unfriendly attitude) that last-minute rides are reserved for emergencies like if someone has a “toothache” and needs a ride to the doctor. She literally said “toothache.” I tried to tell her my situation that I am unable to drive and I wasn’t trying to take advantage of the service. I had been stuck at home for days with no way of leaving, I just wanted to get out of the house and I thought this service was to help people like me. This lady was reserving my requested ride for a possible “toothache” call, and wasn’t going to budge.
At that moment I decided that the SweetHart bus was not interested in helping me with my situation. I almost felt somewhat discriminated against for not being “disabled” enough. I had also been denied of services from the Bureau of Education and Services for the Blind (BESB) as they have decided I am essentially not blind enough according to their definition of “legally blind.” So what you’re saying is I’m not blind enough? I’m too blind to see anything directly to my right and I’m too blind to legally drive a car, yet I’m not blind enough to be helped by the Bureau of Education and Services for the Blind?? That doesn’t make a lot of sense to me.
Not being able to drive restricts freedom, independence, and quality of life. When you can’t drive and you are nowhere near decent public transportation, then what are you supposed to do? Find a way, because I’ll tell you now, being stuck in Danbury, CT without reliable transportation is not an ideal situation to be in.
Check-up after check-up, my visual field reports have remained “status quo”. Time and time again I have heard, “Your vision probably isn’t going to get better…You won’t be able to drive. Move to where there is good public transportation..I don’t know what to tell you.” At first I honestly let those negative comments get to me. It was a natural instinct for me to believe my doctor, I mean he’s the one who has gone to medical school and all, not me. I immediately became discouraged.
My aunt attempted to bring up my spirits by reminding me that as much as doctors and statistics may be something you trust, it doesn’t necessarily mean they are always 100% right. If that were the case I should have been easily dead 20 months ago. With an infection that has only allowed less than five immunosuppressant survivors EVER, it is quite the miracle that I am alive and well enough to be typing this. The fact of the matter is I am alive, not only defying the odds themselves, but I am doing far more incredible than anyone could have every projected. I am living proof that the odds were not entirely impossible of overcoming, so doesn’t that mean there are other odds out there that are ready for me to defy? You’re damn right there is.
If you remember correctly, I told you my doc said if my vision didn’t come back in the first three-six months, that it most likely will never come back, right? Well part of me just can’t seem to accept that. I’m back to optimal physical, mental, and emotional health, not to mention I am only 28 years old. I am far more flexible and adaptable than say a 70-year-old with the same visual impairment as me. I am much stronger, I am far less medicated than I was even a year ago, and you’re still going to tell me you don’t think I am ever going to be able to drive again?! Don’t you agree that is a rather closed-minded way of thinking, especially with all of the technological developments over the past decade? Soon cars will driving themselves for crying out loud! If that is what you truly believe–that I will never be operating a motor vehicle from the driver’s position again, legally–then I regret to inform you that you are wrong! I may have had two brain surgeries but I am not soft, I still have one of the hardest heads you’ll come to find and being told “no” doesn’t come easy to me!
Yes, I have come across a couple of road blocks. That doesn’t mean give up and turn around, it means find another way to get around the damn obstacle! I don’t care if it is under, over, to the side, or through it, I will get by this road block! It may not be tomorrow, this month, or this year, but it will happen, believe me.
You may or may not be doubting me, but you’re probably still wondering how are you going to do that Mo? While I would love to be able to give you a detailed and mistake-free strategy of how I plan to accomplish this, I don’t have one. What I do have are some goals that I am currently in the midst of pursuing.
Since this past November (2013) I started going to visual therapy in Southport, CT at Eye Care Associates. I heard about Dr. Schulman in Southport and visual therapy from one of my old college roommates from Furman, who now happens to be an optometrist. Once a week, on Mondays at 11:00 am, I have visual therapy with my visual therapist, April.
My sessions with April started small with April giving me an eye patch to wear, and her moving a pencil around in air as I follow it with my eyes. Each week I have had to do more and add-on to the previous week. Now I am up to wearing 3D glasses, prism flippers, all while walking back-and-forth trying to maintain my balance across a wooden balance beam while reading numbers and letters on the wall.
I often look silly and was at times skeptical about the visual exercises I had to perform thinking to myself, “This is stupid. How is this going to make me see more? I’m not wasting my time….” I was very close to calling it quits, deciding that I had a better way to spend anymore of the very little money I have. I rationalized with myself, weighed the pros and cons of visual therapy, and decided to give myself a little more time in visual therapy, at least until I saw my progress report.
Last week I had my most recent visual field exam taken by my neuro-ophthalmologist at Yale. Once again, Dr. Walsh prefaced the appointment by telling me that my previous appointments have shown I have Homonymous Hemianopia. He is very much aware of my desire to be able to drive again, but he never hesitates to inform me that he still doesn’t think it will ever be safe to drive, therefore if I do ever drive it will never be under his authorization. Not exactly what I want to hear, especially since I had yet to take my visual field exam that day. Alright, let’s take the test already, before you start discouraging me even more than you already have Mr. Scrooge.
Finally, I get directed to the room where my visual field is going to be taken. I was handed my “clicker” and had to click every time I saw a light, dull or bright, shine anywhere on the screen. I finished, and I asked the lady who administered the exam if she could print out my results for me. Even though she seemed extremely shorthanded and busy, she was still very kind to me, agreed, and handed me my print out upon completion of my exam. The print out showed my previous visual field exam results from July 2013, and the one I just took, six months later, January 23, 2014.
I looked at the results and my mouth quickly dropped to the ground. After what seemed like several moments of my jaw hanging from my face, I was able to reel it in, produce a smile and excitedly yell while simultaneously asking, “It got better didn’t it?!?” The lady who administered the visual field said, “Looks like it, good luck with your driving,” in a way that she too hopes I will be able to drive again one day.
At this point my excitement can hardly be contained! I am so thrilled just that my vision got a tad, somewhat, any bit better at all! I know it is not enough to drive, but considering the fact that there is improvement, to me, is a sign that I might have one more miracle left in me! I have been told by various people and sources that if visual field in HH patients doesn’t return in the first three-six months, it most likely will not. For my visual field to have shown no improvement over my past four visits, but then suddenly there is unexpected improvement after the fourth follow-up, that is a major thing!
The only thing different I have been doing since my previous visual field exam six months ago, is that I started going to visual therapy once a week and doing daily practice visual therapy homework exercises. That has apparently been the difference, despite being told it wouldn’t make a difference, and that it wasn’t worth my time or money.
So I bet you guessed it, you will find my ass at visual therapy in Southport, CT at Eye Care Associates every Monday at 11 until they kick me out! I will also be doing my practice exercises throughout the week, because this girl has more work to do! I can’t, I can, I will drive again, just watch me!
“Do not go where the path may lead, go instead where there is no path and leave a trail.” ~Ralph Waldo Emerson, American Poet, Champion of Individualism, leader of Transcendentalism movement.
Resolution (n.) The state or quality of being resolute; firm determination. A resolving to do something. A course of action determined or decided on.
2013 was a great year for me. I can easily say it was better than 2012, but my 2012 wasn’t too hard for anyone to top. The end result of 2012 was definitely favorable, but the process to get there was one that was hardly envious. Having a successful liver transplant by the skin of my teeth, with not even a full 48 hours to spare was a life-changing event in itself. Then throw on-top of that an extremely rare and fatal fungal infection in my brain and you don’t have to say much else to already know that 2012 was a hell-of-a-year for me. When I look back, I am often puzzled as to why or how I am alive today. You might be thinking, “That was 2012? We’re about to be in 2014!?” True, but most of my 2012-2013 was spent either ill or recovering from illness, so for the purpose of this blog, I am grouping 2012 and 2013 together as one-big healing time period.
While those questions of how or why I am still alive will never be answered, the matter of the fact is that I managed to persevere and triumph over the impeccable odds against me. It is crazy to think that almost 100% of people who inquire invasive aspergillosis in their brain while being immunosuppressed, die. I am one of very, very few people to somehow escape the burden of those devastating odds. Somehow, I, Monique Gesualdi, am still alive. To experience what I have experienced and to overcome what I have overcome, is a huge deal for me, and it has forever changed my outlook on life and how I treat myself. Not like you can easily put yourself in my shoes, nor would I want you to, but it is hard for me to genuinely convey to you how greatly this has affected my life in so many different ways.
For someone in my shoes, “Grateful” doesn’t even begin to describe your appreciation for life and the little things we take for granted each and every day. Things like walking without assistance, showering in a shower by yourself, breathing on your own, wiping your own ass, things like this we do every single day and we don’t think twice about. If asked prior to my 2012 what if those “little things” were taken away from me, could I do it? Could I live for two months of my life in the hospital, in-and-out of consciousness, having back-to-back-back surgeries that resulted in life-or-death? If I was asked that, I would have probably looked at whoever asked me very confidently answered, “Well that’s never going to happen, and even if it did, I can’t imagine spending one night in the hospital let alone two months.” When you are a kid, some of you have visions of yourself growing up, getting married, buying a house, having kids, grand kids, and so on. Never does anyone say, “I’m going to get fatally ill at age 26 and go from there.” But it was happening to me, and I had no choice but to face my illnesses head on.
I was up against the two most feared opponents of all: I was up against time and I was up against death. I have no way of changing time, and once you are “dead,” that’s it, you can’t go back in time and make yourself “undead.” When you are in the hospital and ICU and the doctor’s are doing everything in their power to save their life, you basically have no physical control of the outcome. All you can do is hope and pray and whatever happens, happens right? To one degree yes. To another, I’d say no. You have control of your attitude. For me, attitude was EVERYTHING. My attitude partially attributed to me being alive, able to write this blog (my medical team at Yale and my family and friends’ love and support were also the reason).
I would be lying if I said I had a positive attitude the entire time I was in the hospital. Luckily for me though, I had one of the best medical proxies you could imagine. My medical proxy also happened to be my motivator, my positive encouragement, my strength, and one of my reason for surviving; my Aunt Caryn. Some days were tough, really tough. My recovery once I got out of the hospital was especially rough on me just trying to get back to “myself” and nothing more. Physically, mentally, and emotionally I was being challenged to the extreme. Every single thing in my life had changed, where I lived, who I lived with, what I could do, what I couldn’t do. Just about everything. It was far from easy, but I knew what I wanted. I knew I didn’t want to die. I wasn’t ready, I was only 26 and I had so much left to accomplish. Deep down I didn’t want to just “make it out alive,” I wanted come out swinging. I felt like the previous two or three years of my life were wasted, lost searching for a purpose, MY purpose in life.
In my opinion, “happy” people wake up each morning because they have a purpose and they are on a mission to completing the next step of their purpose, whether they realize it or not. It could be something small, it could be something of greater magnitude, but it doesn’t matter what it is, as long as they have something inside that gives them drive. I call these people “happy” people, because they are at one with themselves, they know who they are, what they want in life, and they are continually moving forward with their lives in one way or another.
Next you have what I call the “complacent” people, they wake up each morning coasting through life. They don’t really have goals or anything that they are truly passionate about, challenging them to enhance their life in one way or another. They are complacent, and that is fine for them because they don’t want to actually put in the time or effort to get the results they “wish” for.
Then there are the “unhappy” people. These people don’t necessarily walk around with a frown on their face kicking the dirt, but what I mean is that their soul is not happy. I’ve seen these people and they don’t truly know who they are as a person, and they are not at one with themselves. Who they are and what they want to be are not the same person and this dissimilarity causes an internal tug-of-war with oneself. Eventually these “unhappy” people become frustrated with life, are typically not accountable for themselves, blame anything they can, and bring down anyone in arm’s reach of them. We have all heard the expression that, “misery loves company.” These people become toxic to themselves, and toxic to others. I’m sure we’ve all met a few of these people along the way or have even had a period of time where we ourselves were guilty of a time of self-pity. As my Aunt would say, these people “can’t get out of their own way,” and that couldn’t be any more well said.
I have floated between my three levels of “happiness,” “complacency” and “unhappiness” throughout my life, but post college, I was a resident in “Cluelessville” which is a suburb of “Complacent City.” I was clueless as to what to do with my life and how to get there, and this often times made me a frequent visitor of “Unhappy Ave.” I knew I was becoming complacent and it scared the living shit out of me (excuse my french). Since I was ten years old, golf was my entire life. Golf was my sport, it was my childhood, it was my heart, and I was certain it was going to be my future. I loved the challenge, the honor, and the prestige associated with golf. Later, golf wasn’t just a game, it was my “in” to greater things in life, particularly my education.
I attended Nease High School in St. Augustine, FL, and Furman University in Greenville, SC solely because of golf. My world was golf, and no matter whether I made it as a touring or teaching pro, all that mattered was golf was my past, it is my present, and it would certainly be my future. My second half of college, my love and passion for the game of golf, something since age 10, I planned on being my career, my future, was now something I “hated” doing due to a very bad two-year coaching experience. So I decided I “hated” golf for a while, quit, threw in the towel and let my clubs get dusty sitting in the garage. What I didn’t realize until recently was that I had let the game of golf define who I was. When you heard the name, “Mo Gesualdi” you automatically associated something with golf, and now, at this time in my life, all I kept hearing from family and friends was, “You’re not playing at all?” or if they asked me to play I always had an excuse as to why I couldn’t play, some legit, others just so I wouldn’t have to play. While it never felt right in my heart to “give up” golf, it had this guilt attached to it for some reason, I did it anyway, against my own instinct. One of many terrible decisions I’ve made in my life, but it was the decision I made, and one I can’t go back and change. I always knew I would get back to playing golf, but it would be on my own terms, when I was ready.
Along with throwing in the “golf towel,” I basically threw in the towel altogether. I had a horrible attitude about myself, about people, and about life for a long while. I was rather depressed my final two years of college and had to go to therapy, for the second time since I started college, one of four times total in my life. I kept it pretty quiet, mostly because I was embarrassed to go to therapy, and I was embarrassed about how I was feeling. I got it together so I wasn’t completely unglued, but the way I was put back together it was like using a cheap glue stick, barely enough to get me through as I was on the verge of “ungluing” at any point in time.
What was my problem? I didn’t realize it at the time, but I now realize I feared responsibility, I feared success, and above all, I feared failure. As a kid I was determined I was going to be a professional golfer of some magnitude when I grew up. Fast-forward to 2012 and I wasn’t on that path at all and it terrified me. Each year I was getting older and not any closer to the person I wanted to be. I was happy and smiling on the outside, taking pictures, having fun, partying, but deep down I was miserable. I was so disappointed in myself. I had no purpose, and the haphazard style life I was leading was proof of that.
Does that make me a bad person? I think not, because I was still kind and friendly and always have the best intentions for others. What it did make me was off-my-beaten path. I made a wrong-turn somewhere in my life and instead of slamming the breaks and turning around, I just kept driving not knowing where the road would take me.
Somehow I failed to accept that traveling 90 mph toward the ledge of a cliff wouldn’t have any repercussions. Well I know now, that certainly isn’t the case. Depression led to drinking. It was the only “solution” to not having to deal with my lack of purpose in life and for a while it felt fine because it opened up my social horizons and I became much less introverted and more easily extroverted. I also met a lot of people, and I was having a great time being constantly social. Every event or birthday party, I was there. If I made to one person’s invitation, I had to go to every invitation I encountered. I had a very hard time saying “no.” Then months passed, and then a year, and then several years, and I wasn’t making any progress in my goals or myself, and it began to eat away heavily at me. Not just emotionally, but physically too. I wasn’t taking care of myself the way I should have been, and just like a plant that isn’t properly watered and fed, I began to internally wilt until I was practically dried up and dead.
Thankfully I had always been an athlete and exercised, because I think that greatly contributed to my strength and ability to endure those three, major, life-saving surgeries in a few weeks time. Was my need for a liver transplant due entirely to eating and drinking lots of glutinous foods and beer over a few years? No, but it certainly didn’t help and surely it expedited my illness to the severity that it was. Is what I put into my body something I can control? Yes. Do I have much better control of my self in terms of how I nourish my body? Yes. Does it feel better? The answer is absolutely.
I feel people who binge themselves in booze, drugs, or food (or whatever superficial and temporary form of fulfillment that is their own personal weakness), is because they are trying mask the feelings that come with having no purpose in life. I not only observed this in myself, but some other people I was surrounding myself with. Not my true friends that I love with all of my heart, (you know who you are), but I encountered many other people over the years. I was “stuck” for a long time, but I finally had the strength and the courage to step away from this toxic environment and this undignified person that I was becoming.
I decided it was best for me to pack it up and move. But by the time I had decided that, it was too late. It was too late. I started feeling sick, and then I fell ill, and then I fell even more ill. It is a horrible feeling to feel hopeless, like you don’t mean anything, like you are a waste of a human being. I sadly had to hit my “rock bottom” before I realized that I was worthy of life, my life. But by then, it was just about too late.
“Just when you think things can’t get any worse, they do. I have learned that life is like hour-glass sand. Sooner or later, everything hits rock bottom, but all you have to do is be patient and wait for something to turn back around.” ~Unknown
I am so lucky, so grateful, so extremely blessed to have not let my rock bottom be the ultimate end-all. Why wasn’t it? Like I said, I will never know why I am still alive and how almost all of the other transplant patients who had a fungal infection in their brain don’t survive, but whatever the medical reasoning is, I know it is because I had a lot of unfinished business to attend to.
I was beyond the point of repair, but the one and only thing I could control was my attitude, and for some unknown reason to me, I managed to have a very positive, a very patient, and very determined attitude when I was diagnosed with stage-4 liver failure. I think that is because I knew it was my chance to make my life better, a chance to “start fresh” and lead a much more fulfilling life. With the love of my friends, family, and top-notch medical attention in my corner, I was determined to live. My MOtivation had been restored. The vision in my head of previously living scared with no destination was now replaced by a vision of living, a vision of overcoming this illness, and not only coming out with a new liver, but with a new mind-set, a new respect for myself, and a new “life.”
The new, transplanted self that I wanted to be is something I am trying and working at each and every day. It is a life-long commitment of hard work, dedication, and self-respect, that will always be a work-in-progress. So far, I am quite proud of myself and how far I have come mentally, physically, and emotionally in the past year-and-a-half. I have found my purpose in life, and that is comforting to my soul. All I will say is that my purpose has been revived and it is taken me back to where I started; back to to golf. I will get into that in another blog, but for now I want to leave you with this.
We are approaching the New Year, a time when people reflect on the past year, and make resolutions for the upcoming one. According to the University of Scranton, Journal of Clinical Psychology, 2012, 45% of you will make New Years Resolutions for next year, but only 8% of you will be successful in achieving that resolution. Those resolution odds are against you, just like the odds were against me, but with the right attitude, combined with determination, I believe you are capable of defying the odds and doing just about anything your little resolution-setting heart desires. My resolution, or my firm determination you could say, is to lead a happy, healthy, and inspirational life.
“The changes in our life must come from the impossibility to live otherwise than according to the demands of our conscience not from our mental resolution to try a new form of life.” Leo Tolstoy
First, I wanted to give a little recap of what I’ve been up to. I have been “on vacation” from Connecticut, the cold, and my “Big Fat Italian family” (whom I love very dearly) this past month. At the beginning of November I made my way back down to the south to Greenville, SC where I lived the nine years prior to my medical miracle. I was thrilled to spend a glorious nine days with some of my best college friends and also my “local” Greenvillians who reside in the area.
My trip to Greenville was a convenient and much needed planned pit stop from Connecticut on my way down to Florida. It wasn’t just any week/weekend though, it was also Furman Homecoming weekend. Not only did I get to visit with my Greenville friends, but I also had the additional pleasure of getting to see people who came for Homecoming weekend. It was so great to be back in Greenville. I enjoyed my stay greatly, but what I enjoyed the most is what I missed the most, and that is co-mingling with friends and having a good time with people my age. It was exactly what I needed and somewhat rejuvenated my soul, which had be longing for such companionship for months. Now that I have visited my friends, seen my mom and stepdad, and enjoyed some Florida golf, I feel like my optimism, my passion, and my desire to climb the highest mountain tops has been restored and I can now return to Connecticut, to my family whom I miss, and continue on my path of recovery with a refreshed, healthy, and determined mind.
Part 2 of 2 “The Sixth-Sense Penny
I spent a total of 20 days in Florida with my mother and stepfather, and during the day my mother and I spent some quality time together, busy almost each and every day doing one activity or another. One of our “activities” I am going to discuss in great detail because I found it very intriguing. This topic may not interest you at all, and that is perfectly fine, but I thought I would share my experience for those who become appealed by the “sixth sense.”
My mom (whom I sometimes refer to as “the mothership”) and I travelled from her home in Vilano Beach, FL about an hour and half down I-4 to this little tiny community in Cassadaga, FL known as the Cassadaga Spiritualist Camp. Let me preface this by saying that I am not particularly religious. I am baptized Catholic, but I do not have my Communion or Confirmation. Rather, I just do my own thing. I have my own little prayers going in my own little space and that is what currently makes me happy. For some reason though, since I was a very young person, the notion of spirits and the paranormal has always sparked an interest in me.
The mothership claims when I was two or three years old, I had her yearbook and I pointed to someone in the yearbook and told her that they were in heaven and then I pointed to someone else and said that they were going to heaven soon. Very strange for a kid to say, you might think. According to my mother, I accurately pointed to someone who had passed and unfortunately the second individual I pointed to ended up passing soon after. Being at such a young age I do not remember this, and gladly so. It kind of gives me the heevy jeevies. While I do not remember that particular incidence, I do remember on more than one occasion when I was young I thought I may (or may not) have seen something that resembled a spirit. Whenever I thought I saw something, I instantly closed my eyes and tried to block out whatever I saw out of my head and try to convince myself that it was nothing. Either way I have no conclusive evidence, just frail images in my head, the hair standing up on the back of my neck, and a gut feeling to support the notion that spirits do exist beyond life.
Back to Florida. My mom and I arrived at the Cassadaga Spiritual Camp and our first stop was at the bookstore/gift shop. We walked in and were greeted very kindly by a lady. My mom quickly decided that we needed to get our auras taken. My mom paid and we headed into the next room to have our photos taken via what appeared to be some very old fashioned polarized camera. My mom had her aura read first and then was debriefed about her aura by one of the certified aura interpreters. Next it was my turn and within a minute I was ready to have my aura read.
“Oh wow, you have such a beautiful aura!” the lady exclaimed. She goes on to briefly tell me that the green on the left means I am a teacher, or that I need to be a teacher. Then she says, “You may be an “Indigo Child.” I just nodded my head not knowing what that meant at all.
My mom finished up with her aura reading and I was then ready to get my full aura read. The aura reader, a 70-something year old woman took hold of my recent Polaroid photo and began examining my aura. My mother’s aura was mostly red with some yellow. My aura was much different though, my aura had many colors. It had a small amount of green on the left of the photo, but centrally, it was whitish/blueish/violet progressing into blue with very subtle violet present. Then in the far right corner of the photograph is violet. One of the first things the aura interpreter said to me was, “You are much more calm than your mother aren’t you.” I was thinking she nailed that right on the head but you can observe that easily without an aura reading! “You do have a beautiful aura, and it is a huge aura.” She explained to me that a large aura meant people nearby will feed off of my aura and positive energy, but she warned me to be careful because negative auras that may fall within my radius may drain me and bring me down, so I should be cautious and keep my distance from those people.
She also said I had a third eye, but the last time I checked I had either two or four, depending on if I’m wearing my glasses, but not three (lol, jk, I know what having a third eye is). She went on to say that my aura suggests that people come to me for help, which I can definitely contest to be the truth. She stressed that I am very open to spirituality and have psychic abilities. If that is the case, I should look into tuning into my “psychic” abilities so I can win the lotto and hire myself a personal driver to drive me around instead of my grandma (just a thought 😉
The other lady, who at the beginning of the aura reading said that I needed to be a teacher, told me I was going to do great things and asked to give me a hug, and then it was off to the next spiritual adventure. (I went on to read more in depth about auras and my aura and what my aura lady told me and it really interesting to read up about and relate to. When you’re bored at work piddling around on the computer you should take a few minutes and see if you can find out what your aura is.)
Next my mom and I ventured down the road the camp road to get a reading from a medium. At the camp welcome center there is a board with medium’s names and numbers that you can call and a phone right underneath it. How were we supposed to choose from the 20-something names of certified mediums on the board that day?! To my left I noticed a sign that said something along the lines of, We will not help you pick a medium, you have to let your instincts choose and whatever happens is meant to be, yada, yada. I believe the first name we chose was, “Anita Evans,” and my mom made the phone call. No answer. We tried another name, “Nora Ester.” Again, no answer. We were getting mildly discouraged and finally we tried our third attempt, and Mrs. “Judy Cooper” answered. Yay, Judy Cooper it is.
It was after our aura readings that we made our way to Judy Cooper’s location, just a block down the road from the Cassadaga Spiritual Welcome Center. Judy had a very welcoming front porch which my mom sat in a chair and I chose to sit in the rocking chair waiting for Judy to answer the door. My mom negotiated for Judy to do 30 minutes with her and then 30 minutes with me splitting the $70/hour rate into two individual readings. My mom went in and I just rocked away on the porch looking up anything I could find about my recent aura reading on my iPhone.
The thirty minutes went by exceptionally quick. My mom and Judy stepped out onto the front porch, and it was now my turn. I had the intention of being open-minded, but I also wanted to remain skeptical of her potential vagueness and any somewhat obvious speculations she might make about me. I didn’t really have any intentions on what I wanted to hear her to tell me though, for instance “Is Aunt Suzy okay?” or “Am I going to win the lotto?” (I don’t have an Aunt Suzy). The mediums are not fortune tellers, they are simply a medium between us and spiritual world. This sort of thing, mediums, spirituality, etc. isn’t math, where 2 +2 always equals 4. There is no right or wrong. It is what you chose to believe or not believe, and at this point in time I didn’t want to walk in as a skeptic nor did I want to give her any hints or clues about myself which might influence her to say certain things, I was just going with the flow anxious and curious to see what Judy was going to tell me.
I followed her into her office and sat in a chair across from a desk. She asked to join hands and said a brief prayer to the spirits asking only good spirits to come forth. She let go of my hands, closed her eyes, and starting talking very, very quickly. She told me beforehand I could write down anything she said, so I grabbed the pen and the pad that she gave me and started writing frivolously.
I ended up taking about eight pages of notes down (small notepad paper). I had already been intrigued by the aura reading, but Judy really had me. Judy started off by saying that December I am going to be dealing with a lot adjustments. She says that she knows I’m a kind person but I don’t take too much from anyone and that I do what I say, don’t just talk the talk, I walk the walk. Judy told me that I’ve been wanting to move quicker than I have been able to and that my movement has been restricted. She must be referring to the fact that I can’t drive and I get cabin fever very quickly. She then said January presents a lot of new things clearing for me. Sounds good to me, Judy, keep on.
“Wait, a few spirits are stepping forth,” Judy proclaims. “A lady is stepping in over your left shoulder and she is telling me that you are very multi-dimensional and always doing something, but you need to slow down.” Judy continues to say, “You have a very important decision to make. “This person, I’m getting a motherly vibration from with family resemblance, you may or may not know who they are.” I start thinking and I don’t have many immediate female family members who have passed. Maybe one of my great grandma’s our my aunt’s cousins? I’m not completely sure.
Judy goes on, “Quickly stepping in over your right shoulder is a friend or acquaintance who was murdered or passed very quickly or unexpectedly. They are a younger person, near your age, and they want me to tell you they are sending you pennies. Pick up these pennies when you see them and save them this is their way of paying attention to you to let you know they are there.” “Woah”, I pause for second. Okay keep writing, keep writing, keep up with Judy. Judy tells me they “stepped out”.
Next Judy tells me that sometimes my balance is off and that I will have an opportunity to remove things that are blocking me. I’m thinking to ask Judy am I going to be able to drive, is that what you mean? There is no chance to interrupt Judy as she continues speed talking. “January is going to be about duty and responsibility before pleasure, and life and improvement.” “Your movement and travel has been restricted, but this is a test of faith.” My movement, if you mean my ability to drive has been restricted, and sometimes it does drive me crazy (no pun intended), but I keep myself very busy and mind occupied as to not go stir-crazy, but Judy is telling me slow down, so then what I do?
“You have the answer to all of your questions.” Judy tells me that I get clear feelings and these quick vibes that I get from people are ones I need to start trusting. She insists that I need to start listening to my intuition about everything because it is most likely right. Thanks Judy, I’ve always felt that but I second myself and my choices often and afterward my gut also tells me when I’ve done something wrong. She tells me this because I am going to be presented with challenges dealing with other people. Judy tells me I can’t change other people or a bad situation but if I continue to think this “disappointment will be your friend.” Point taken Judy, point taken. I’ve known that for a little while and have had my fair share of disappointments with people, but Judy has inspired me to really start listening to my gut feelings, which is probably something we all should learn to do anyway.
“You are on Earth to learn lessons and you are always learning. You’ve experienced quite a few things.” I definitely have learned quite a bit about life, people, and myself while I was overcoming my illnesses which I would not have learned if I was just cruising through life like I previously was. Judy tells me, “Start writing. Write down things when you’re making decision, good and bad, this will help you decide. Write down your dreams. Your dreams are to connect with you. Write them down and they will make sense later. It will pop out at you, experiences will come into you.”
Judy changes subjects and says that, “You are always on the move but your spirits are sweeping around you. Slow down.” “You have a lot of decisions to make. Take time and don’t make snap decisions,” Judy urges me. “You may be packing, the spirits are moving you. You are on the right path. The coming months are very important. Experience the journey but don’t wander haphazardly like you’ve done in the past.” Did Judy just call me out? I think so, lol. “You have the power of choice and attitude. ” She goes on, “Learn the lesson of “no” in some situations presented to you. Damn you Judy, I am guilty of being a pushover sometimes. “You’re going to want to go the extra distance, but you need to slow down, have great preparation, and a positive attitude.” I started thinking to myself to Judy, “Are you a certified medium or my therapist because you both are starting to sound a lot alike,” haha.
My favorite thing Judy says to me is next. “Once you set your mind to something it’s like the jaws of a shark.” Could she be referring to my plan with my aunt Caryn to be on the Shark Tank? That would be pretty awesome. Judy goes on, “Spirit is opening a divine plan for you. The next six months are going to be a roller coaster ride. Listen to yourself. There are going to be a great deal of changes physically, emotionally, and financially, all for the better.” Thanks Judy, that’s what I like to hear! “Reach out, participate, ask for help with these new opportunities. You will move forward in every level of your life.” Boomshki! I love hearing that! “Don’t hold on, use your free will.”
Judy then tells me that I’m not good around chaotic people and that I don’t argue but I will if I have to, if “my feathers have been ruffled.” People who ruffle my feathers, I need to step back from. She says that people who are very opinionated I need to step back from, and also emphasizes that because their negative words or opinions will feed into me. She also said something along the lines that my aura reader told me which was to be cautious of negative energy as it was cause me to be off-balance. “Words attract people, be choosy with your words, it’s your turn!” Judy says leaving me puzzled with that one. “Dig beneath the surface of people and their appearances. You will be meeting people but don’t take people in too quickly, use your intuitiveness. Judy repeats that I have a big decision to make, write in my journal about my dreams, the good and the bad and that I am not trusting my own “knowingness” and I need to.
“Affirm,” Judy says. “You see it happening, it’s going to happen.” “The spirits hear what you’re saying. You’ve been disappointed in people before. Go with your inner self, you have that ability.” She skips over to say, “You have a big gift in front of you, hold onto it.” My transplanted liver I’m assuming? “You will be moving, slow down, take time to make decision. It will be a contract. Signed. Make sure that it is worded the way you want because it will be permanent. You will be able to change your decision but it will be costly. It will be a contract for work, school. This will be in September. Don’t sign anything right away.” I think I know what Judy is referring to and that excites me greatly. Also its weird how she mentioned September specifically because this past September when I was meeting with my therapist, we often discuss my desires to find ways that I can resume my “normal” life, as least as much as possible. At that session we decided that in one-year, by September 30, 2014, I would be moving in pursuit of a career where I can continue my recovery, stay healthy, get stronger, and try to pursue a “normal” life again. Now I just hope Judy is right! I don’t want to give it away but come next year if Judy is right I will be sure to let you know! For Judy, whom I met 15 minutes ago to say that to me, is quite the coincidence but just makes me wonder, what if she really does talk to these spirits?
“The spirit over your left shoulder, the motherly one, wants to give a pink rose, and also a blue coat. This coat is for your protection.” What does the pink rose mean? My grandmother’s name is Rose, does it have anything to do with her side of the family? So I have a pink rose and a blue coat and now Judy is telling me the other spirit, the one over my right shoulder says they died before they were supposed to that they were too young.
I’m thinking this has to be my organ donor. My organ donation was kept “anonymous” but some of my family was told that my liver is from a donation that happened as a result of a car accident that some young people died in and that my donor saved 8 lives and enhanced the lives of up to 18 people that day (including tissue donation). This is just one thing I have been told. Someone also told me my donor is a 40-something year old Ecuadorian man. I was able to find this man in the newspaper archives and he passed on May 1, 2012, but my transplant was late at night on May 3, which means my donor passed sometime on May 2nd, not May 1st, so that man couldn’t be my donor.
I have spent many nights grieving over the fact that here I am alive, but only as a result of another person’s passing. It is one thing if they lived a plentiful life, but to hear that it may be someone young, someone who had not lived long enough to experience the many things they probably wished to experience, breaks my heart a little. A lot, actually. There is no way humanly possibly for me to ever repay them for my life-saving gift which simultaneously is the abrupt ending to their future. It is a tragic yet miraculous thing at the very same time which has been a struggle for me to deal with everyday.
The following day after my mom and I visited the Cassadaga spiritual camp, I resumed the rest of my vacation as normal. It is necessary for me to get my exercise in or I get quite irritable, so I frequently walked 3.5 miles from my parent’s house over the Vilano Bridge and back. I was walking over the bridge as I normally do thinking about many things, normal as well. This day my mind was preoccupied with what Judy had said to me the day before.
Since my liver transplant I have been very curious about my donor and wrote a letter last fall which I submitted to the New England Organ Bank which goes through a very rigid process. You don’t know really anything about the donor or their family due to privacy laws, but just knowing they had an accident and were young is not enough for me. I have a very personal connection with this individual, I mean not only did they save my life but a part them lives inside me. They are one of the only reasons that I am alive today, I can not help that I want to know who they were.
I do completely understand donor’s families in this situation to choose to keep their privacy, especially if they have not had adequate time to grieve and more forward. I do. I can only imagine what it feels like on that end. I hope one day they do come around and choose to read my letter to them. I put my heart and soul into that letter and I want them to know how truly sorry I am for their loss and that even though I have no way to make up for their loss, I will do everything in my power to make sure I use my second chance for greatness.
Here I am walking up the bridge, these thoughts filling my head, tears streaming down face, hopefully masked behind my sunglasses so walkers passing by do not see the emotional wreck traveling up the bridge one foot in front of the other. As I approach the very top of the bridge, my head looking down at my steps, I see a penny. Could it be? No, there’s no way, it’s just a penny, pennies are everywhere. But what if? What if Judy was right and my donor is acknowledging me? I picked up the penny and not even moments later a lady and her teenage son stop. My mind is still going crazy over the penny as the lady tells me her son survived cancer and this is his first time walking over the bridge and if I wouldn’t mind taking a picture of them. Of course I don’t mind! She hands me her phone and I snapped a few photos, she thanked me, I congratulated them and they went on their way.
I stood for another moment and decided I needed to snap a photo of my penny on the bridge where I found it, so I did. This could be a complete coincidence but Judy seemed to be right about so many things I couldn’t possibly ignore it. And then, the picture with the cancer survivor at the same time just seemed a little too bizarre that it had to be more than coincidence, it must be a sign from my donor, especially since I was thinking about him/her at that very moment.
You probably think I am crazy, and I probably am, but it is this “craziness” that creates a drive within me, a belief system, that there is more to life than just you, your body and your mind. There has to be a purpose for it all somehow, somewhere. How many times a day do you ask yourself why, why this, why that? Or maybe you don’t. I do all of the time, just wondering away about so many things and having virtually no definitive answers.
Whether “the spirits” are right or Judy was just merely giving me a $70 therapy session, it was all good advice that I choose to embrace and head forward with wherever it is this path that I am in is taking me. Alanis Morissette travels with one hand in her pocket; I am going to travel with a penny in mine 🙂
“Walk with the dreamers, the believers, the courageous, the cheerful, the planners, the doers, the successful people with their heads in the clouds and their feet on the ground. Let their spirit ignite a fire within you to leave this world better than when you found it…”
― Wilferd Peterson
“Don’t give up before the miracle happens.” ~Fannie Flag
It is hard to believe that eighteen months ago I was bed-ridden in the ICU on life-support. Tubes in-and-out of my throat, surgery after surgery, no one knowing whether each day if it would be my last. Living in uncertainty unwilling to even produce a thought for yourself while your body instinctively telling you that your only job for the day is “to survive,” leaves a lasting impression in your head. What I endured and have overcome in all 71 total days in the hospital last year was not only a game-changer, it has forever impacted my life. For the better.
Since my transplant, multiple brain surgeries, extensive physical, occupational, speech, psycho, and now visual therapy–I have since made great strides from the depths of ground zero, essentially. In all honesty, I feel the healthiest I have ever been in my entire life. My strength and endurance are coming around quite nicely as well. I have been working on myself, and making the best “me” that I could possibly be. I have a feeling, almost a knowingness, that I am on the right track and great things are just around the corner for me.
As I mentioned before, recovering from three very major surgeries in a five-week time span, takes quite an enormous toll; not on just my body, but my emotions as well. I can proudly say I have been seeing a psychotherapist for the past four months. My therapist, Susan, has helped me with dealing with the emotional aspect of having a transplant as well as dealing with some of the permanent life changes I have had to make. I have come a long way in the past four months. I used to cry for hours upon hours, locked away in my room. I had no idea why I was crying or how to stop. I was told it was okay to cry. It was okay to let it out. I had so much emotional grief built up from what happened to me, that it all just eventually started coming out in the form of uncontrollable tears down my face. Still, to this moment, tears well up in my eyes just writing and reflecting on my experience.
The tears are not always exactly sadness though. They are all sorts of emotions wrapped into one colossal meltdown. Happiness. Frustration. Triumph. Anger. Anticipation. Discouragement. Wonder. Hope. Appreciation. Dissatisfaction. Confusion. Gratitude. While I am still working to overcome all of these emotions, I am in a much better place than I was several months ago.
Since my transplant, I have often felt guilty. Guilty because I now have life, while my donor doesn’t. My donor is another human being, someone’s daughter, son, brother, sister, cousin, and they are dead. The only reason I am alive is because they are not. I know they are not dead because of me, I am alive because of them. It has been very tough on me, and I imagine this feeling of guilt is going to stay with me forever. I will never be able to repay my donor for their ultimate act of gratitude, but what I can do is give back in the form of being involved in organizations that raise awareness about organ donation, liver disease, and/or other topics that I desire to be a part of.
Since my transplant I have involved myself in several groups, as well as volunteer for several organizations. Donate Life Connecticut and the American Liver Foundation are just two of them, but one of the first groups I became involved with was COPE (Community Outreach for Purpose and Empowerment). COPE, formed by my aunt, aims to empower girls and young women. Members of COPE learn and improve their goal-setting techniques, engage in active plan to achieve their goals, and learn to overcome obstacles and interference that may be holding them back. Overall, the members of COPE learn how to live their life with a purpose. I created the website for COPE and update it regularly. I have really enjoyed doing this, because it allows me to get my creative juices flowing and keeps my mind sharp.
Another way I keep sharp, is through attending and participating in Toastmasters. Toastmasters is a well-recognized, international organization, that is focused on enhancing people’s public speaking, communication, and leadership skills. My aunt Caryn had a feeling I would be speaking publicly about my story one day and
encouraged me to join. If you aren’t a member yet, I strongly encourage you to find one in your area and get involved. I went from being completely incapable of speaking in front of a small crowd, to confidently giving a speech in front of hundreds in a short few months. I began attending the meetings last winter and have since given two prepared speeches. I won “best speech” for both of my speeches, and even won the club’s “Kalley Award” (most impact on the meeting) after my “Icebreaker” speech! My aunt was certainly right when she told me Toastmasters was going to be helpful in my future. I never anticipated how quickly though.
This year I was selected as one of the American Liver Foundation‘s LIVEr Life Champions. As the LIVEr Champion, I served as “the face” for the Liver Life Walk this past September in Stamford, CT. Leading up the event, I filmed a :30 sec PSA for the ALF, was featured on The Liver Life Walk’s regional brochure. Not only that, but I had to be one of the faces at the walk, and give a speech about my survival in front of several hundred people.
I continue to utilize my communication skills while serving as a volunteer ambassador for Donate Life Connecticut. In the past year I have been a part of the Danbury AAA donor program, attended several Donate Life events. I have also shared my survival story to the medical and ER staff at Danbury hospital, raising awareness about organ/tissue donation (through the New England Organ Bank and Donate Life CT). Just last week I was in Greenville, SC and had the privilege to shared my story with the Furman Women’s golf team. That was amazing experience, because I could see that I really touched those girl’s lives. The more speeches I do, the more confident and easier it is to speak in front of people. Hopefully it only gets better from here on out.
I have also occupied my time by returning to the game I hate to love the most, golf. Last January, my grandfather, Emilio, took me to the driving range to see if I could hit; I couldn’t even make one complete swing. I had so much pain in my elbows from being so weak and suffered from severe joint pain, a side-effect of several of my medications. I continued trying to workout and get stronger. By April I was hitting at the driving range with elbow braces trying to minimize the pain. About a month after that I played 18 holes. Shortly after, I was able to walk 18 holes with a pull-cart. I spent a lot of my time practicing and even played in a couple of captain’s choice tournaments in the area. In one of the tournaments, I won $100 for lowest gross score (-11) with my team. At another tournament I also won $100 for longest drive (from the red tees, don’t get too excited!). By the end of the summer I was able to shoot in the the low 80s from the white tees. As of now, I have only broken 80 once since my illnesses; a 73 at Candlewood CC (fairly easy par 71 course). This summer you better believe I am going to get my scoring average down in the 70s!
Now I am currently in St. Augustine, Florida visiting my mom and stepfather. Just a few days ago I was in Greenville, SC for a wonderful nine days catching up with my bestest of friends. I will be spending the next three weeks here in Florida soaking up the sun (while of course wearing my SPF 50), playing lots of golf, attending my 10-year high school reunion (Nease High School, Ponte Vedra Beach, FL), and doing other fun activities with my mom and step dad. Once this trip is over it is back to the grind per-say of my routine of visual therapy, other various doctor appointments, follow-ups, blood work, and daily exercise.
My transplant doctor at Yale informed me that by my next infectious disease appointment in February, there was a good possibility I would be taken off Voriconazole, my anti-fungal medication, Voriconazole. Fingers crossed, I would love to be off this medication; not only because it would be 12 less pills/day to take, but also because the medication is $4,400 a month (no that is not a typo, it is $4,440/month). Even though the price is covered by my insurance, my insurance is such a pain my ass. Each and every month I have to battle with them to get me my medication on-time, simply because my insurance does not want pay for it. Oh well, it could be worse right? Eighteen months ago I was on life-support. Battling insurance inconveniences and other minor hassles are insignificant in comparison to battling to be healthy, battling to breath, battling to to be alive.
In the last eighteen months I have learned so much about myself, about life, about death, and about the inbetween. I will never be able to fully express, in detail, the emotion or meaning of what I have been through. I would never wish it upon my worst enemy to experience what I experienced last spring, but at the same time, I prefer it happen to me rather than someone else. As crazy as it sounds, I would do it again if it meant someone else wouldn’t have to go through it because I know I can handle it. Knowing you knocked “death” on it’s ass after looking it square in the eyes, is one of the most satisfying feelings in the world. I was meant to survive. Before you survive you must endure struggle. That is what gives it meaning. So many people go along just cruising through life. When they coast, they forget about what is really important. I was one of those people.
I have a purpose and I am just now finding out what my purpose is. It begins by being able to share my personal medical journey with you so you can learn from me. What do I hope you learn? I hope you learn that giving back is one of the greatest things you can do. I hope you learn that a positive attitude is the most powerful and infectious attributes that you can have. Lastly, I hope you learn to believe in yourself, and have faith that everything is going to fall in place one day.
Eighteen months down, so many more to go….
“I have come to accept the feeling of not knowing where I am going. And I have trained myself to love it. Because it is only when we are suspended in mid-air with no landing in sight, that we force our wings to unravel and alas begin our flight. And as we fly, we still may not know where we are going to. But the miracle is in the unfolding of the wings. You may not know where you’re going, but you know that so long as you spread your wings, the winds will carry you.” ~C, JoyBell C.
Yesterday, September 29, 2013 I was one of two Liver Life Champions representing the American Liver Foundation at the 2013 Liver Life Walk of Fairfield County along with little Charlee and her Angels 🙂
I attended this event last year just a few short months after being discharged from Yale for a miraculous liver transplant and two incredible, life-saving brain surgeries to remove a rare, and fatal abscess consisting of a highly aggressive fungal infection called invasive aspergellus.
Below, I gave this speech to hundreds of family, friends, and supporters in efforts to raise awareness, educate, and assist the 30 million Americans currently living with liver disease in one way or another.
The experience I had at this year’s Liver Life Walk was one of the best days of my life. I felt so comfortable sharing my story to the crowd. It wasn’t just any crowd though; these were people who have been affected directly or indirectly by liver disease.
I will say no more, you can hear how it went in the above video. Thank each and everyone of you for your continued support of Team Just Say Mo, the Liver Life Walk, the American Liver Foundation, and Donate Life.
Check out my first PSA (Public Service Announcement! The PSA was for the American Liver Foundation’s Liver Life Walk of Fairfield County. The walk will be held on Sunday, September 29th, at Harbor Point, in Fairfield County. Registration begins at 9 am!
I have been chosen as one of the Liver Life Champions this year along with the extremely adorable little girl, Charlie! This is the second year that my team “Just Say Mo” will be walking at the event, but this year, being one of the Liver Life Champions, it really means a lot to me to have your support!
This was my speech prepared for the Liver Life Walk Kick-Off Event, at Harbor Point in Stamford, CT.
As Rocky Balboa once said, “You, me, or nobody is gonna hit as hard as life.”
I have been an athlete and seemingly healthy all of my life. I graduated with my BA in Communication Studies in 2007 from Furman University, in Greenville, SC on a full-ride to play Division 1 Women’s Golf. In March of 2012, five years later, I was still living in Greenville, SC in the midst of making a transition to St. Augustine, FL. I know plans can sometimes change suddenly, but I could never in my life envisioned how drastically my plans were about to change. No one could have!
In March of 2012, I was diagnosed with end-stage liver failure and I somehow had to digest that I might only have a couple of months to live and that my ONLY hope of survival was in getting a liver transplant. I never imagined having to deal with anything of this magnitude at only age 26, so I called my Aunt Caryn, because she always knows the right thing to say to me. “Aunt Caryn, I have been diagnosed with this rare disease that only 1 in a million people get, my liver is failing, and I need a liver transplant to survive.” Calmly, she responded, “Monique. Only one in a million people can play golf as well as you. You are going to have to take that focus you learned from golf and use it to getting better. You’re going to need a strong mind because you’re going to be fighting for your life.” My aunt said she would be there for me, and we could accomplish anything together, so from that moment on, I put on my game face, ready to brave this life-threatening challenge as best as I could.”
Everything happened so rapidly from there on out, and within a week my aunt and my cousin Rocco flew down from CT, picked me up in my car in SC, and we drove back up to CT. A week after I arrived in CT, I had my first liver evaluation at Yale-New Haven and was admitted to the transplant program on the spot. Within one week of being admitted to Yale hospital, I suffered internal bleeding, and I lost my pulse four times.
While the internal bleeding almost killed me, it did shoot me to the top of the transplant waiting list. The average wait time is 361 days for a liver, but on May 3rd 2012, not even two days after I was officially put on the transplant waiting list, I was a recipient of a matching liver! It was a phenomenon, but even before I got the chance to really celebrate this miracle, I had developed an extremely rare, extremely fatal fungal infection in my brain called invasive aspergellus. Invasive aspergellus in the brain has nearly a 100% mortality rate for immunosuppressed patients, so my only option for survival was to have a very risky brain surgery to remove the abscess. The surgical team was unable to remove the entire abscess out on the first attempt, so almost three weeks later I was under the knife again for an even riskier brain surgery. Imagine having three major life-saving surgeries in a matter of five weeks’ time–my body felt like I had been plowed over by a speeding Greyhound bus!
After spending most of the spring of 2012 in the hospital, I was finally discharged on June 14th to my grandparent’s house. While this was a huge day for me, I was still not off the hook, as a trace of the infection remained. A PICC line was put into my arm, so for 6+ hours a night, 7 days a week, I was on a very aggressive IV treatment of an anti-fungal agent called Amphotericin B. The Ampho is a very toxic agent, and my kidneys could only tolerate the drug for 7 weeks before it was causing too much harm. FINALLY, on August 3, 2012 I had the PICC line removed out of my arm and it was adios Ampho and hola road to recovery!
My family was informed that even if I did survive the multiple brain surgeries, there was a pretty good chance I could come out of surgery deaf, blind, paralyzed, or worst of all, dead. I definitely didn’t come out deaf, (even though sometimes I might wish I was deaf so I wouldn’t have to hear my loud Italian family, JK J). I am far from paralyzed. With a lot of hard work, I went from being bed-ridden and extremely weak to running my first 5K in May in 33:44:66. I am not completely blind. I did lose my peripheral vision to the right in both of my eyes from my multiple brain surgeries and can no longer drive a car, but that hasn’t stopped me from driving a golf ball as I just recently participated in the American Liver Foundation’s Charity Golf Tournament in July, where I won the long drive contest for the females. A few days later I shot a round of 80 from the white tees at Candlewood CC. Most importantly, I am not dead. My body, my mind, my emotions, and my soul went through so much in such a short period of time, but I have worked very hard physically, mentally, emotionally, and spiritually to get to where I am today, and because of that I am very much alive–perhaps the most alive and healthiest I ever been in my life!
Somehow, to medical disbelief, I am a survivor. Why? Well I don’t know exactly why, but I can tell you this. I had a very impressive medical team at Yale who was doing everything within their power to make sure I was leaving that hospital alive. I can’t go without saying I have the most amazing friends who even though most of them live 800 miles away from me, they checked in on me daily, sent me cards, and flowers, and gifts, and some of my friends even came to visit me from afar. My family was incredible. Every single day out of the 52 days I was at Yale, at least one (but usually more than one) member of my family made the hour long trip to Yale to be with me. I honestly wouldn’t be alive today if it wasn’t for my aunt Caryn and everything she has done for me, especially instilling in me that those one-in-a-million odds I was labeled with didn’t mean one-in-a-million victim, it meant one-in-a-million survivor.
Throughout this whole journey I had so many people believing in me. When you have an army of people supportive of you, constantly telling you that you are a fighter, that you’ve got this, you start to believe it. I was like Rocky Balboa, only I was in the ring battling death. Round after round I kept fighting, and fighting and like Rocky, every time I got knocked down, I got right back up. The verdict may not have ended in a knock-out, but what is most important is that I prevailed, and I am a survivor.
One year ago was the true beginning of my recovery, and now, by just looking at me, you would no idea I had a life-saving liver transplant or survived a deadly infection in my brain! I am living proof of a miracle, but that miracle wouldn’t be possible without the advances made in medicine over the past couple of decades. One-in-ten Americans (30 million) are currently living with liver disease, and anybody can be that “one,” and you never know when it could be you. That is why it is very important for us to come together and become educated about liver disease, raise awareness, and most importantly support the American Liver Foundation and Team “Just Say Mo” at the Liver Life Walk of Fairfield County! (For for more information about supporting me and my team “Just Say Mo” at the Liver Life Walk this year please visit this link.
I want you to remember, “Life ain’t about how hard ya hit. It’s about how hard you can get hit and keep moving forward. ” ~Rocky Balboa
I have been asked to be the 2013 Liver Life Champion (Fairfield County) this year! The Liver Life Walk will be held on September 29th, in Stamford, CT and I will be speaking at it this year!
I am so honored to have this opportunity to represent the American Liver Foundation and to publicly speak about my journey. Thank you for all who have followed me and supported me, I wouldn’t have the courage to be doing this without your continued support!
If you are in the area I would love for you to attend the event on September 29th, 2013 at 100 Washington Blvd, Stamford, CT 06902. I have designed Just Say Mo T-shirts for the event and I will be letting you know soon about purchasing those.
“With respect to cerebral aspergillosis, there is a clear difference in outcome between immunocompromised and nonimmunocompromised patients, as shown in table 1. Among the 141 immunocompromised patients with cerebral aspergillosis, 140 died, a mortality rate of 99%. In contrast, only two of the 15 nonimmunocompromised patients died, a mortality rate of 13%.”(Denning, David W., “Therapeutic Outcome in Invasive Aspergillosis”, Oxford Journals. 23 September 1996. Pg 10.)
I often find myself researching online about a variety of things. Sometimes it is current events, or sports, other times I will check out what Justin Timberlake is tweeting or get caught in reading some trashy article about a Kardashian, but often times I get absorbed into reading about various things concerning my medical adventure this past year.
This past weekend while doing some periodic researching, I found a couple of very interesting statistics in regards to my medical diagnosis. If you know me at all, or have followed my blogging, you already know I survived a miraculous liver transplant one year ago this past May (of 2012).
After I successfully became a recipient of a new liver, you may also be aware that I had two major brain surgeries shortly after, and was once again a survivor. I defied every odd and belief presented to me and still to this day I am referred to as the “miracle child” by my doctors because honestly, there is no medical reason I should be alive today. My body which had no absolutely no time whatsoever to heal from the trauma of having a liver transplant just a couple of weeks beforehand to then be a victim to an immensely fatal and unheard of cerebral fungal infection is nothing short of amazing. You know I had the brain surgeries but do you know what for? Or why? Probably not, so I thought I would try to explain in using the least amount of “big doctor’s words” as possible.
When you have a transplant of any kind, your life has changed forever, including all of the little things that you commonly overlook such as where and what you eat/drink, your daily routine and habits that you just perform without thinking about. One new aspect of my daily routine that I had to incorporate after transplant was taking my immunosuppressant medications on-time, three-times a day. Yes, I have a weekly pill box and have my phone set on a timer so I can swallow my 20+ pills on-time each day (hey, that is down from 46 a year ago!) Nine of these pills I will have to take each and every day for the rest of my life. Six of the nine are called identified as “anti-rejection” drugs. What is an anti-rejection you might ask?
When you have a transplant of any kind, your body recognizes the new organ in your body as “foreign” and it’s natural response is to reject it just like it would any other foreign object in your body. In order to “accept” the new organ and not “reject” it you must take the anti-rejection medication prescribed by your doctor every single morning and evening on a 12-hour cycle. Once you have your transplant, you see your transplant doctor quite regularly, which mine is at Yale-New Haven, located about an hour away from me. You are scheduled for blood work and check-up appointments with your transplant team every week after your transplant for the first month so your doctor can closely monitor the level of anti-rejection medication in your blood. Too much of your anti-rejection in your blood can result in toxicity and too little can result in possible organ rejection. After the first month, you are reduced from getting blood work done to every two weeks, then to every three-weeks, then to every month, two-months, three-months, etc. A week from this Thursday I have an appointment at Yale to get blood-work and have my liver check-up in which this will be my “one-year” post-transplant check-up! After this appointment I will be “promoted” to only having to see my transplant doc every two-months. YAY!!
As I mentioned, after my transplant, I will be on anti-rejections for the rest of my life. Anti-rejections are classified as immunosuppressants. What is an immunosuppressant? An immunosuppressant is a substance that performs immunosuppression of (weakens) the immune system. Why would I need my immune system weakened? To not “reject” my liver. What does weakening my immune system do? A weakened immune system is more susceptible to infections or diseases that target the immune system.
Once I received my transplant, I was, and currently am on anti-rejections like all transplant patients are. My body was already extremely weak from just surviving a liver transplant, not to mention all of the medical complications including losing my pulse four times and being revived. My body, nor did I, have any idea that I was going to have to endure two crucial brain surgeries, that would once again perform some serious stress on my body without any time for recovery. Everything happened so unexpectedly where there was no time to sit down and realize how incredibly quickly everything was happening. It’s really not that far-fetched to to say my body was trying to recover from being run over by a truck, and personally I wouldn’t hesitate to say it felt like the truck ran over my slowly, backed it up, and ran over it a good two times more.
So why did I have two brain surgeries after my transplant? As I mentioned after my transplant I was very weak and also immunosuppressed. Also, to be noted, I was in the hospital for an extended period of time, exposed and vulnerable to all of the sickness and illness floating around in the air waiting to be caught. By being so weak, immunosuppressed, and surrounded by sickness, meant I wasn’t in the best position to defend myself from any illness that came within close proximity to me.
With that being said, aspergillosis, is the most common fungus present floating everywhere in the world, through the air in the form of dust and present in mold. Typically, when it is inhaled it is not a threat and is destroyed by our immune system. You can probably see where I am going here. After my transplant my body was so weak, it could not destroy the aspergillosis as it got into my respitory system, then into my bloodstream, then up to my brain. Convenient right?
So after my transplant I was experiencing the most wicked headaches that I can even begin to describe, seeing flashing lights, and hearing voices which don’t exactly compliment my pounding, non-stop headache. Obviously, something isn’t right, so the next step was to get an MRI of my head to see if anything could be found. After a couple of unsuccessful attempts to get an MRI because of my resistance from the extreme pain and inability to sit still, finally it was discovered that aspergillosis has invaded my brain in the left occipital lobe.
No one really can easily say or spell invasive cerebral aspergilosis, so it is just much easier to refer to is an an abscess or infection in my brain. At this point docs have realized I have a very rare, and highly fatal fungal infection in my brain while my health is fading at a very rapid rate. Me, myself, and I have essentially “left the building” if you know what I mean.
So just shortly after receiving a liver transplant in which happened so unexpectedly yet in impeccable timing, I am now diagnosed with this shocking and terrifying diagnosis that no one has ever heard of. Luckily for me, as I mentioned, I had left the building mentally, but my poor family had just been through a very tough week emotionally after losing my pulse several times, barely getting a transplant before I kicked the bucket, and now they are being told I have this notably rare, and drastically lethal infection in my brain where the only option is to be invasive, and even then there isn’t too much medical hope for survival?!? I mean come on, what is going on here, an episode of Grey’s Anatomy? Unbelievable.
Even though I was out of it, and hardly “awake” my body must have known to turn-on “kick-ass mode”. All I remember is that I had gone to sleep with a headache one night, and two-days later when I woke up the date on dry-erase board was several days later than from when I last fell asleep. I also had tubes in my mouth which I didn’t have in when I last remembered going to bed. “Mo, you had a brain surgery.” What? I have no idea what you are talking about. I feel my head and there is still hair. I feel around and there are these little metal things all down the middle of my head. Holy shit, what is this bling in my head? Staples. Holy shit, I really did have brain surgery.
It was explained to me, but it never really sunk in. I didn’t have much time for it to sink in because even though they had performed one brain surgery, a bit of the infection still remained. My neuro-surgeons had removed a good portion of the infection, but due to it’s location, there was a very serious risk that the second surgery could result in my inability to see, speak, or potentially be paralyzed, and that is only if I made it out of surgery alive. I was immediately put on a very aggressive treatment of hardcore anti-fungal agents.
My neuro-surgeon was very hesitant to operate a second time, but since the follow-up MRI showed no improvement, he would have no choice but to put the knife to my head for a second time. If I did make it out alive, the chances of blindness, speech loss, and paralysis were even greater than they were for the first brain surgery. The risks of this brain surgery was even greater than any of the other surgeries beforehand since it was going to be the third major surgery within a matter of five weeks. The next option, and only option at this point, was to perform a second brain surgery.
I was “aware” when I went into my second brain surgery, and I was “aware” when I finally awoke a day after the surgery. When I awoke, I was incubated and my neurosurgeon, Dr. Matouk, asked me my name. I wrote down “Mo” and Dr. Matouk was like, “No, that’s not right.” and my sister was like, “Yes, that’s right, that is her nickname that she goes by.” So then he asked me to read something from a far and write it down, so I did. He was in utter amazement. Within two-days after surgery, I was able to take a few steps and walk, slowly but surely hobbling along like a stiff piece of wood. Then I started progressing my physical activity a little bit each day and was doing “laps” around the ninth floor of the transplant wing. No one could believe it. I was ready to do more, walk more, but everyone was pretty much like, “let’s take it easy, you’ve been through a lot”.
“Take it easy”, has never really been a part of my vocabulary to be quite honest. By not taking it easy, and continually pushing myself physically and mentally each and every single day is one of the reasons why I have healed like I have. It would have been easy to feel and say, “poor me” “why did this happen to me?” But I didn’t. Instead, I saw where I was, I didn’t like what I saw or how I felt, and I said to myself, if you want to “look normal” again and not look like a lifeless patient who has been hit by a 16-wheeler, then you are going to have to work hard at getting better. Really hard.
I would think to myself, “Right now, physically, there is not much you can do, but be patient, and keep thinking you can do things Try a little bit further each day than you did the day before, and that is all you can do. If you can do that, while staying positive and not let the best of your frustrations get to you, you will be rewarded for your efforts one day.” So that is what I did, and this is where I am. I had a lot of people praying for me and my health, so many cards and letters and words of praise and encouragement. I was constantly motivating myself to get better so I could one day hopefully “be normal” again rather than be sick on the verge of demise. So far I am pretty pleased with how I basically stared death in the face and said, “Get the hell outta my way!” Seriously, I’ve got things to do, and people to meet, like Justin Timberlake : )
Today marks the one-year anniversary of my very miraculous liver transplant. The third of May was just one day of many last year in which I was tested mentally and physically so far beyond anything that has previously tested me in my 26 years of life combined. Today I fortunate enough to say that I am a living proof of a miracle. One of my favorite quotes says, “I’m not a one in a million kind of girl. I’m a once in a lifetime kind of woman,” which I think describes me quite perfectly.
For surviving transplant patients, their transplant anniversary is a very special day that will forever be celebrated. It is a magnificent and reflective day because it signifies the day you were given life, just like on the day when you were born and first entered the world, but it also celebrates all of the physical, mental, emotional, and spiritual challenges you had to overcome to survive.
I learned it is a recognized tradition of transplant recipients to celebrate the anniversary of their transplant as their “new birthday.” This third day of May 2013, I celebrate this one day, of one year, of hopefully many innumerable days, and many bountiful years with the most MOmentous, MOnumental, meMOrable gift I will ever receive (I love throwing those “Mo’s” in).
Like I said, I’ve already received the greatest gift I could possibly ever imagine, which is the gift of life. There is not many people in this world that can say they have experienced, endured, and persevered what I went through, at my age, or any age for that matter. Twenty-six/twenty-seven is an age where I was/and am old enough to appreciate what a second chance is. It is also an age where I am young enough to really go ahead and start my life fresh and set-out to do things in my life that I might have not done in the past, due to fear of failure. The goal is to achieve ultimate satisfaction, love, and happiness with myself and others.
Every birthday, you have the chance to make a wish when you blow out the candles, and there is one wish that I do have for this particular birthday. I will tell you that my wish does not involve money or things. It does not involve anything far-fetched or unattainable. But it does involve something so close here, so close to me personally; my family. While I would rather not go into family details I will leave you with the lyrics from U2’s epic ’90s song “One” in which my only wish, birthday or not, is that my family could embrace the lyrics of this song and once again be one single unity, one alliance, one family.
“And I can’t be holding on to what you got when all you got is hurt…
One love. One blood. One life.
You got to do what you should
With each other
But we’re not the same
We get to
Carry each other
Carry each other
Today we met with the Mayor Boughton of Danbury, CT to hang the Donate Life flag at City Hall for Donate Life Awareness month where flags will be flown across the entire state for the month of April! Show your support for Donate Life on April 19th by wearing blue & green proudly on National Blue & Green Day!
April is Donate Life Awareness Month, where the entire month is nationally observed to honor everyday heroes who are/were organ, eye and tissue donors. Before this year, I never knew Donate Life Awareness Month even existed, but obviously after having experienced a transplant first-hand, and a transplanted organ being one of the only reasons I am alive today, it is now a topic that is very near-and-dear to my heart. I was twenty-six year old when I had my transplant. Twenty-six. If you told me the year before on my 25th birthday that in about a year and half I would be dying of acute liver failure and need a liver transplant, that would soon result in a deadly brain infection that would require two extremely dangerous brain surgeries, I would have probably laughed and said there was a greater chance of Nicki Minaj being elected President in the…
April is Donate Life Awareness Month, where the entire month is nationally observed to honor everyday heroes who are/were organ, eye and tissue donors. Before this year, I never knew Donate Life Awareness Month even existed, but obviously after having experienced a transplant first-hand, and a transplanted organ being one of the only reasons I am alive today, it is now a topic that is very near-and-dear to my heart. I was twenty-six year old when I had my transplant. Twenty-six. If you told me the year before on my 25th birthday that in about a year and half I would be dying of acute liver failure and need a liver transplant, that would soon result in a deadly brain infection that would require two extremely dangerous brain surgeries, I would have probably laughed and said there was a greater chance of Nicki Minaj being elected President in the next election. That just did not seem possible to happen. To me?? Nahhhh…….
Ha. Well it happened alright. My life was normal, I seemed healthy, then the next thing you know I am jaundiced, blowing up like a balloon, and diagnosed with end-stage (IV) liver disease among a list of other things. Is this some sort of sick joke? How could this be? I was playing indoor soccer like two weeks? I’m not dying of liver failure, can’t be. After I smacked my face a few times and realized I wasn’t hearing some diagnosis from a scene on Grey’s Anatomy, I was like, “So where do we go from here, what can we do about it?” “Your only hope of survival is a liver transplant.” Seriously? A transplant? I asked how much time my liver had left, and I was told maybe a few months. (that was until my liver got nicked during one of my liver biopsies and then I got really, really sick, really fast).
I did some research and the average time a person waits for a liver is approximately one-year. I did not have a year. I was lucky if I had a couple of months. I was admitted to Yale New-Haven on April 24th, 2012, and received my transplant nine days later on May 3rd, 2012, just one day after being on the transplant list.
When you hear the word “hero” it is often accompanied by the names of Martin Luther King Jr., Abraham Lincoln, Susan B. Anthony, Rosa Parks and many more that we have read about or heard of through family/friend’s stories, the History channel, books, articles, or online. When I think of who my hero is, I don’t have to sift through memories or recall someone I learned about in Advanced Placement U.S. History class that I learned over a decade ago. I have part of an actual hero inside of my body! That is wild, and strange, and just completely mind-blowing to me that the surgeons at Yale cut me wide-open and put another person’s vital organ into my body, hooked-it all up, and that it works better than “my own” liver that I was born with. Crazy.
Waiting for a donor organ can be a very stressful experience, since you have absolutely no idea when a matching donor will be available or if it will be available in time. I met a gentleman several weeks ago who waited for 5 years, and experienced 14 false calls and trips to the hospital after being #1 on the transplant list before he actually had a successful match. Can you imagine being told 14 times there was a potential transplant available for you, busting your ass to get to the hospital, to only be let down to know it wasn’t a match, and not knowing if/when a possible match would ever come in time!? I was officially on the transplant waiting list on a Monday and received my transplant on that Wednesday, the same day that I made it to #1 on the list! That is practically unheard of! Just another remarkable miracle that the angels were on my side, as you can see the median wait for each organ is listed below (http://organdonor.gov/about/transplantationprocess.html):
Everything about a transplant is amazing and I want more than anything to be able to somehow express to my donor’s family how each and every night before I go to sleep I thank their son/daughter, boyfriend/girlfriend/ wife/husband, brother/sister, cousin, niece/nephew for my life. I thank them because they have not just given me a vital organ necessary in order for me to live, but they have given me patience, strength, and courage. They have taught me to appreciate all of the small things that I once easily overlooked. They taught me that time is too precious and to become more adventurous and committed to try new things. I have become more involved with the community, and I am actively trying to do little things that will hopefully one day add-up to bigger things and one day change people’s lives. I was not just given a liver, I was given a purpose.
I have a part of this hero inside me, that saved my life, and I have no idea who it is. That “unknowing” definitely creates this void within me that I do not know if I will ever be able to fill, but just like many other transplant recipients, I wanted to write a letter to my donor’s family. I never in my life imagined having to write something under these circumstances, but it was a very difficult and emotional experience for me. After much struggle and tears I produced a very heartfelt, sincere, thank-you note that brought my family and even my social worker to tears upon reading it. I cry just thinking about it, let-alone writing it, because it made me feel almost selfish, because I had life, and I was writing to a family I knew nothing about, carefully selecting my words to express my gratitude for their generous act of kindness.
It has been almost six-months since I have sent my letter to my donor’s family, but I have not heard anything back as of yet. I do realize it has not even been quite a year since their loved one passed last May of 2012 and I am well-aware how emotionally tough that may be for their family considering how emotional it has been here on our end. I am aware that I may never ever hear a response and will always be mystified by the name of my hero, but I would be lying if I said I did not hope to one-day know who they were.
Of course one of the first things I wanted to do when I was well enough and some time had passed was to contact my donor’s family to express my genuine gratitude for their loved one’s heroic act, but it is not that simple. Being a donor is a confidential and all of their information is kept very private. There is a regulated process in which you can contact the family of the donor via the New England Donor Bank (NEDB). My social worker gave me the information to contact my donor’s family in which I wrote a letter and sent it to the NEDB. They then read it to see if it is fit to send. There is a very strict format as to not get too personal or give away too much of your information as to not give away your identity for confidentiality reasons. I had to make some minor adjustments and resend to the NEDB. Upon receiving an acceptable letter, the New England Donor Bank then lets my donor family know I have a written a letter. The family then chooses whether to receive the letter or not. If they do wish to receive the letter they than can choose whether to write back to me or not. If they do choose to write back to me, they write a letter and send it to the New England Donor Bank. The New England Donor Back then notifies me that a response letter has been written, which then I choose whether I would like to accept their letter or not. If both parties do have interest in meeting one-day then I believe they can do-so through a governed process. From what I have heard, it can be an awkward encounter since the act of donation may bring one party to feel grateful and indebted while the other may feel pained and anguished.
Whether the name and/or identity of my hero remains a mystery or not, they will forever be my greatest hero of all. I know it is probably hard for many of you to fully-understand what having a transplant and all of the other complications (including my two brain surgeries that ensued), and how they have forever changed my perspective on life and who I wish I be. All I really want is for just one thing I say sticks with you in a positive way, if not today, than somewhere down the road.
I have been a registered organ donor eight years before I got my transplant, just because my mentality has always been, “If I’m dead, what use do I have for my organs?” It was a very thoughtless process for me. Obviously, that is a personal choice of mine and I completely understand this decision might not be so easy for some people, and I respect other’s decisions in regards to organ donation, no matter what those decisions are.
What I do find very important is that you do make a decision either way, and act upon it. Say you actually do want to be a donor, but just haven’t gotten around to it. Just saying you want to be an organ donor and not taking the 3 minutes to register on-line frankly seems silly and lazy to me. You might potential save the life of somebody and positively influence 50 or more other people just by putting down your Words with Friends or Instagram for 3 minutes and by going to http://www.donatelife.net and becoming registered, officially.
On the other-hand, some of you may choose to specifically not become an organ donor for whatever reason it may be. One of the most common things I hear is that people believe they are not healthy enough or “too old” to be a donor. Another myth I’ve heard is that people do not wish to have specific parts of their body donated including their corneas or skin, so they do not register to donate at all. I have heard that many people do not want to donate organs because they they wish to have an open casket or be cremated. Another myth I have found out is that people do not register to be donors because they fear that in a life-or-death situation, that emergency medical personnel will not perform the necessary medical procedures in order to save their life, rather so their body can be used for donation! Finally, a myth that many may not be aware of is that you do not have to be dead to be a donor! That’s right, you can be a living-donor for a single kidney, the lobe of one lung, a segment of the liver, a portion of the pancreas, a portion of the intestine, or a portion of the pancreas.
It is perfectly fine to choose to not be an organ donor, but please make those decisions based on the facts, not the myths. While you may watch Dr. Oz every afternoon or have watched too many Holiday Inn Express commercials, you are not capable of diagnosing whether your organs are of satisfactory health level to be donated; only your doctors can. Even if some organs cannot be donated, others may be perfectly legitimate to donate to save someone’s life. Remember, between the various organs and and tissues in the human body, one person can save over eight lives and effect the lives of 50 or more!
Secondly, you can throw the “I am too old to be a donor” notion right out of the window. NO ONE is too old to be a registered donor. The oldest organ donor, to date, was a 99-year old cornea donor, and the oldest organ donor was 93 years old! Not only can you be ancient and still be a donor, but you can choose exactly which organs you wish to have or not have donated, it is not an all-or-nothing thing. Remember, it is your body and your decision is completely up to you! And yes, you can still have a normal funeral service with an open-casket and your body will not be “mutilated” as some myths falsely suggest.
If you are seriously ill, the number one priority of the medical team is to save your life! The emergency doctors and nurses working to save your life are separate from doctors who perform organ transplants, and organ donation is only considered if brain death has been determined, so no, they are not going to let you die so your body can be donated.
Finally, and one of the most amazing things you may or may not know about organ donation, is that you do not have to be dead to be a donor! As my time clock was winding down very rapidly last May, one of my best and most loyal friends, Jessica Fry, was about to get on a plane in South Carolina and fly up to Connecticut once she found out she was a potential match for my liver. If that is not a bad ass friend, then I don’t know what is. Luckily, just before I was about to make friends with the angels in the sky, one of the angels exchanged their life for mine. It apparently wasn’t my time.
Now that I have provided you with some information about Donate Life and organ/tissue transplantation, hopefully you have a greater understanding about organ donation and being a donor, and I encourage you to take the 3 minutes to register online at www.donatelife.net right now. I was extremely lucky, others are not as fortunate and die waiting for a transplant. Talk to your friends and family and ask them if they are registered donors. You have no idea what your someone else’s organs may do for you someday or how you might change someone’s life life my “hero” did. “Don’t wait. Donate.”
“A computer program matches donor organs with recipients based on certain characteristics. These include blood type, tissue type, height, and weight. The length of time the patient has been waiting, the severity of the patient’s illness, and the distance between the donor’s and the recipient’s hospitals also figure into who is the best match for a specific organ.”
117, 741 people are waiting for a transplant in the US (The largest football stadium in the U.S. holds almost 110,000 people)
18 people die each day waiting for transplants that can’t take place because of the shortage of donated organs.
In 2010, 62% of living donors were women. The statistic is reversed for deceased donation.
In 2010, 67% of all deceased donors were White, 16% were Black, 13% Hispanic and 2.3% Asian.
As of December 2011, the national waiting list was made up of 45% White, 29% Black, 18% Hispanic, and 7% Asian.
Currently, more than 100 million people or 42.7 percent of individuals age 18 and older have registered to be organ, eye and tissue donors in the U.S.
The nation’s top percentage of donor include Alaska and Montana both with 79% and the lowest being New York at 13.3%. Other states include Connecticut 39%, Florida 34%, South Carolina 27%, North Carolina 53%.