“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.
Here is my Facebook post to Ellen which has almost 60 shares and 150 likes so far. Let’s keep this going!
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
Last month I had my check-up with my infectious disease doctor at Yale-New Haven, Dr. Topal. While all of my doctors are very important to me and my health, I consider my check-ups with my infectious disease doc to be one of my most important because the appointments with him are in regards to the life-threatening abscess I had in my brain in 2012, called “aspergillus fumigatus”. While that infection is no longer present due to the aggressive anti-fungal treatment I was on, I am still currently taking 12 pills/day of a very, very expensive medication ($4,400 a month) just to ensure that it does not return.
I really love my infectious disease doctor, Dr. Topal. Besides being so kind, you can tell he truly cares about his patients and seems to take the extra steps necessary to ensuring his patients are well-taken care of. For instance, each time I’ve had an appointment, Dr. Topal is the one himself typing up the summary of my visit, not just relaying information to the nurse for her to type it up. Dr. Schilsky, Dr. Rodriquez, and Dr. Assis, I have seen do this for me as well, and it is something I definitely notice and admire about them and their commitment to their profession.
The morning prior to meeting with Dr. Topal, I had an MRI taken of my brain to see if there had been any changes since my last MRI, taken five months beforehand. We unfortunately had to deal with some insurance issues, and my scheduled 9 am MRI wasn’t actually taken until much later. I finally had my MRI taken a little after noon, barely in time to get to Dr. Topal’s office located a couple of miles away at the Yale-New Haven Physicians Building.
After getting my vitals checked and sitting and waiting with my grandmother, Dr. Topal strolled in with another young doctor, I assume an attending. He briefly asks the basics, “How are you doing? How are you feeling?…..” I respond, “I’m great, I feel great”, because I did; and I do. “Well you look amazing.” “Thank you….”
Then Dr.Topal and I get into talking about how he had so much trouble with getting the MRI approved, and how he had to personally call and speak to my insurance to tell them how important the MRI is. I mean, it is an MRI of my brain. On-top of that, it is to make sure I still don’t have any remnants of a fatalinfection in there. No big deal right? I’m pretty sure that it is the most important MRI that I can possibly get at this point in time, so I do not know why the insurance always has to be an ass and make it so difficult each and every time to approve what is clearly without a doubt a very important MRI.
Sometimes, I really don’t understand insurance companies. Every single month, I have a very difficult time getting my medication on-time or approved without a hassle and having to make two or three different trips to Walgreens, because they my insurance only approved “partial” amounts. I take 12 Voriconazole pills/day. There are 30 pills in the bottle. Do the math, I go through the bottles like crazy. My pharmacy is approximately 10-15 minutes away, I don’t drive, it’s just a monthly pain-in-the-ass that my family and I have to deal with. But why? It’s not like I want to take a medication that costs nearly $4,500 a month? It’s not like I enjoy having to swallow an additional 12 pills/day on top of all of my anti-rejection medications and vitamins I now have to take after having my transplant. I don’t know many docs that would personally speak to the insurance, especially so promptly, but Dr.Topal did, got everything straightened out with my MRI, and I was highly impressed.
Anyway, after dealing with that inconvenience, Dr. Topal reminded me of my last visit several months ago, and my last MRI showing the aspergillus was no longer there, but there had still been lots of swelling. In comparison, this most current MRI (that I took earlier that morning) showed no abscess, and that the abscess, (the size of two finger-nails), had filled with fluid, with no edema (swelling) around it. I asked if that was normal, to have fluid fill where the abscess was, and he said yes, completely normal.
Dr. Topal went on to say I used to be anything but boring, I’m truly a “miracle child”, and that today my results were “boring,” which is a very good thing, and that he couldn’t be any happier with the results! Doc also said I’m one of only a handful of people since the early 2000’s to have survived and doing well with that type of fungal infection in their brain (invasive aspergillus) and post-surgery treatment. Most people don’t make it out of the hospital because the infection is so aggressive if not recognized and treated very aggressively immediately. With that being said, there is not much research to serve as a guideline as to how much medicine or for how long to treat me with. As long as my body is tolerating the Voriconazole, (which it is currently tolerating extremely well), I will continue my treatment of Voriconazole for an unknown period of time as a preventative measure so the aspergillus doesn’t return. Dr. Topal then went on to say he “doesn’t want to worry about me,” and so that is why they are keeping me on the Voriconazole for an extended period of time. That’s fine by me, because I surely don’t want to worry about me either, and if the aspergillus came back in my brain, that would be something very worrisome to not just me, but my doctors as well. Invasive aspergillus is a vicious monster that hopefully I have slain forever and ever.
MRi pre-craniotomy (top) and post both of my craniotomies (bottom) performed May 23 & June 1, 2012 . You can see the infection in the white, and then where it was removed. Notice how much swelling was present before my surgeries. (The bottom MRI, from June 1, 2012, does not show my most recent MRIs with no abscess or swelling left. Unfortunately, I have not seen those in person.)
I will be on Voriconazole for at least another year just to ensure that the infection does not return. Currently, I take a total of 27 pills/day which Is significantly less than the 46 pills/day I was taking at one point. When I do finally get off the Voriconazole it will be only about 15 pills a day for the rest of my life, and if I can kick some of these vitamins, maybe even less. The very, very least amount of pills I can ever take per day since my transplant is nine pills, which really isn’t that much to swallow, no pun intended.
The following week after seeing Dr. Topal, I had an appointment with my neuro-ophthalmologist at Yale-New Haven, Dr. Walsh. I have seen Dr. Walsh every few months since my transplant because my vision started to cause me problems back in the hospital following my liver transplant. I started having the worst pounding head-aches you could imagine. It felt like my head was being slammed against a concrete wall. That wasn’t all, I would also see bright flashing, moving, colored lights in the right hand corner of my visual field. I was in so much pain and extremely tormented by the flashing lights and voices I was hearing, I just wanted it to end. It felt like there was a painful disco going on in my head and I would have done anything in the world to make it stop. It got really bad and it didn’t take long for my doctors to realize something was really wrong, especially after once again during my hospital visit I was unconscious. I honestly don’t know how I got through it, all I know is I just wanted it to end; anyway, anyhow.
At first my medical team tried to put a patch over my right eye to see if that would make the flashing lights go away. I felt like all that did was block-out some of the brightness from the room. I was still in pain and annoyed by the pounding in my head the flashes I saw. Then my condition started to get really bad and I was in-and-out of a state of awareness. I vaguely recall one time when they were attempting to perform an MRI on my brain. I couldn’t even get through sitting still long enough for them to get an MRI it because my head hurt so excruciatingly bad and I was screaming for them to stop. Other times I kept trying to hold my head and squeeze it to put pressure on certain points to decrease the pain in any way I could. The whole not being able to tolerate pain is extremely unlikely for me. I can usually I can endure the utmost pain without letting anyone know something hurts me if that is any indicator to you how painful it was.
My medical team at Yale-New Haven put a patch on my eye and alternated between hot and cold packs to try to minimize the flashing lights and extremely painful headaches
My doctors eventually discovered an extremely rare, and very aggressive fungal infection in my brain called aspergillus. Immunosuppressed patients with aspergillus in their brain is very rare. What is even more is them surviving. My doctor’s only option was to operate, but the likelihood that I could come out with any vision, able to speak, or not paralyzed were not very good at all. That’s even if I survived at all, which was extremely unlikely anyway, and even more so when considering what my body had already went through weeks prior (seizures, cardiac arrest, liver transplant, massive blood transfusion).
Once I had my first brain surgery, I lost my sight to the right in both of my eyes. If you drew a line down the center of each of my eyes, the right half of each of my eyes can no longer produce an image in my brain for me to see. The fungal infection in my brain, located in the left occipital lobe of my brain The occipital lobe is responsible for your visual and speech output. As you may or may not have learned in biology class, the left side of your brain affects the right side of your body, and the right side of your brain affects the left side of your body. Due to the location of my infection (on the left side of my brain), it caused a visual cut to the right side. This field cut is called Homonymous Hemianopia. I can hardly say that correctly, so I, like many others just refer to my visual deficit as HH.
With this type of visual cut in both of my eyes, I was highly prone to word blindness with writing and reading impairments. I am extremely lucky in that I was spared about 3 degrees in my central-right peripheral vision, and because of this I am able to read and write with no difficulty at all. Initially, I did have some reading issues and episodes of dyslexic letters, but after a short time of exercising my brain I was able to resume reading and writing without any problems at all. I had some speech difficulties when I was first discharged and talked very, very slowly, and slurred often. I would avoid certain words just because I couldn’t say them confidently. It didn’t take long for my speech to resume to normalcy after speech therapy, while I do notice I do still tend to slur when I get very tired and sometimes I still chose to avoid using certain words when I am on the tired side.
The first couple of weeks after my brain surgeries, I had to shut-one eye and squint to text and read because it was very hard to see, things were not aligned. That definitely corrected itself or I have learned to compensate better than expected so I am very, very grateful for that. One thing I have noticed, is that while working on the computer, I can’t see things on the right side of my computer screen. Also, when I am watching TV, I can’t I see the whole screen. I have to constantly shift my eyes to the right side of the screen just to see what’s over there, as whatever is in my right peripheral has just “disappeared”. I can’t imagine not being able to read and write, since those are two of my outlets that I now turn to while being confided to the house so often.
After my first brain surgery, my aunt Dana (left), and my aunt Caryn (right).
I was discharged from the hospital in June 2012 and from then until this March 2013 I have gone to three appointments with my neuro-opthamologist, Dr. Walsh, and once with my optometrist at Opticare locally, here in Danbury, CT. I have taken three visual tests during that time all with Dr. Walsh at Yale in New-Haven, CT.
Dr. Walsh has been around a very long time, and has a lot of credibility under his belt. On the Yale website, the little blurb about Dr. Walsh says, “ Dr. Walsh was named Distinguished Graduate by Bowman-Gray School of Medicine in 1983, and received an honorary degree from Bejing University in 2004. He is the author of two textbooks related to Neuro-ophthalmology, including Visual Fields, published by the Academy of Ophthalmology and now in its third edition. He serves on the Telemedicine Board of Orbis International, and has more than 20 articles online. He is a frequent lecturer at other universities, and a frequent contributor to the literature.” Sounds impressive and credible.
After my most recent visual field test, Dr. Walsh reported to me the words I did not really want to hear. His exact words in regards to my visual field exam were, “Status quo.” Status quo? I’m an athlete, and hearing anything besides “better” or there is “improvement”is not what I want to hear, ever. Dr. Walsh went on to say, “The good news is, nothing worse. Nothing is better, but it is exactly the same. It is not worse so that is good.” Okay, well I’m glad it’s not worse, but honestly I was never thinking in that direction! I was actually hoping that it may have gotten slightly better, since Dr. Topal told me the week before that the swelling was gone in my brain. I thought perhaps, less pressure on my optic nerve may mean there was a miracle chance that some of my vision would gradually return and eventually I could drive? I know that is a stretch, but I am all about wishful thinking. I mean, it’s a miracle I’m alive, on more than one occasion already, so I’m pretty sure another “miracle” isn’t that much more to ask for, right? Apparently my ambitious expectations were a long-shot and what I thought was completely wrong, according to how I interpreted Dr. Walsh’s report to me.
So my next question was, “I’ve looked up prism glasses online and how they can expand your visual field, can I get those and would they assist me in being able to drive?” Dr. Walsh, said, well, no, because I have homonymous hemianopia. I pretty much only see what is to my left or directly in-front of me, almost nothing to the right, at all. You could be standing to my right with your middle-finger directed right at me if your’e standing on my right side and I wouldn’t have a clue that you were even there. Go ahead, you can get your free shot haha.
I was fortunately spared a few slight degrees to the right of central (3 degrees), which is an enormous help me with reading. For the most part in the books I have read, I have been able to see the entire page of the book and have learned to scan better so I can shift my eyes to make sure I have read all of the words on the page. Some HH patients only see half of the page and so they may skip half the words on the page simply because they do not see it.
I can only see directly in-front of me, which is obviously a safety issue for driving. “It is illegal to drive, ” Dr. Walsh says in a which came off to me as a not-so pleasant, slightly condescending tone, assuming as-if had been cruising around illegally, (which I certainly have not excluding once in a parking lot, and on the quad (4-wheeler) in our backyard). The other doctor in my exam room, much younger, (and very handsome I might add), chirps in and says that, “Legally to be able to drive in the state of Connecticut you need to have 140 degrees in your visual field to legally drive.”
Originally when I lost my vision while I was in the ICU at Yale, I just thought I had an issue with my right eye since I can’t see to the right, It took a visual field exam and neuro-opthamologist to tell me that I had a field cut in both eyes to the right side. Apparently there is a name for this “disability” as I have been labelled by the government. I can never say it correctly, but I did read up on it (which I found here: http://www.eyeassociates.com/hemianopsia_article_blue.htm and http://www.hemianopsia.net/).
In-order to drive in Connecticut you need to pass the visual field test which is set for 140 degrees peripheral vision. My doc said I have about three degrees right of central, so around 93 degrees, I’m assuming that is. Prism glasses can give you about 20-30 extra degrees, so if I could get those, that would put me at about 120 degrees, at best, still short of what I need legally to drive in Connecticut. Maybe I can move to Iowa or somewhere in the Midwest, I bet their laws are less strict. If worst comes to worst maybe I can live there and ride a cow for transportation, lol. MOOOOOOOve, biatch, get out the way!
My visual field test which shows homonymous hemiaopia (black is where I can not see)Each eye shows almost exactly the same visual field loss to the right
I think my heart broke into a million pieces when I heard this. He totally made me feel like it’s nothing at all to never be able to drive again. The thought of having your driving privileges taken away for the rest of your life, in my opinion, is one of the worst things has happened to me during this whole transplant experience. It has taken away my entire independence and freedom, two things that I took for granted prior to my transplant. Yes, my family is plentiful and very loving, caring, and self-sacrificing for the most part. While I am so grateful and fortunate to have the amazing family I have, it does not eliminate the fact that I so desperately crave my independence back, and there is not anything else in the world I want that to one day be able to drive again.
That crushing news a few weeks ago was one of the biggest disappointments I have been told thus far. I was balancing fighting back the tears and being so extremely mad at the same moment. I bottled up that frustration for a good few days while my family kept assuring me the world is not over and that one day, I will be driving again. At first, I really did lose hope for several days. I let that negative diagnosis said consume my mind with the worst possible thoughts and drained my head with misery and limited self-worth. Then, something my family said finally got me thinking. They said, “Well the doctors also said you wouldn’t be alive, and you are. They also said you might be paralyzed, or completely blind, and you aren’t, so the doctors aren’t always right, Mo. You gotta stay positive, one day there is going to be something, there will be some sort of technology and you will be able to drive again Mo.”
I just needed to hear it, and that triggered a “you’re right” moment in my head and I started daydreaming like I normally do thinking of me driving again one-day, and my back-up plan of having a personal driver named Gesualdo that we would call “Waldo” for short for the specific purpose of when I had to call him, I could say, “Where’s Waldo?” Haha.
While my vision may not ever come back, that does not mean some brilliant, ingenious scientist will create some sort of visual assistance gear that will be able to expand my visual field where I can eventually see to the right, and perhaps, maybe even be able to drive. Years ago, people with amputated legs were told they were never able to run again, and now I’ve read an article where a man had not one, but two prosthetic legs, and has run over 9 half-marathons! That is crazy and so bad-ass all at the same time! If they think they are going to tell me I can’t drive, and I am just going to let that be it, then they are very, very wrong. I just have to figure out how to get there, but it is written-down on my long-term goal list, my journal, and hangs on my vision wall. I will have that checked off if it is the last thing I do in this life, and if you know me at all, if I say I’m going to do something, it gets done.
I may not be able to see anywhere near what you see, but you wouldn’t know it. I have learned to compensate pretty well. I did walk in New York City alone on New Years Eve, and even though it was slightly overwhelming, I only bumped into a few people, and tripped only once, so that is pretty good if you ask me considering how mad swarmed the city is on that particular day. I still am having a little trouble though. I went again to NYC with my sister this year, and somehow I managed to get my foot stuck underneath the wheel of a baby stroller that I collided with head on that I failed to see. My sister still won’t let that one go.
A few weeks ago at the grocery, I was walking down the central aisle, with my head turned 90 degrees to the left looking down the aisles and there was a random “sale box” of items that I did not see at all and I totally slammed into that. The other day I went to pick up something off of the floor and I slammed my head hard into the table because I couldn’t see it when I went to bend over. I do walk into the side of the door-frames from time-to-time from cutting the corners too sharp, and I definitely still do bump into people at the store. Overall though, I have learned coping mechanisms such as siting in certain places around the table, and walking along-side people on my left so I can see them and stay close to the wall or edge as a guide.
As of November 2013 I started going to visual therapy at Eye Care Associates, an hour away in Southport, CT. I will write an updated blog in regards to that when that has concluded. What is written below is dated from March 2013.
As I mentioned, I am going to two eye doctors, and my optometrist at Opticare said let’s wait a year and see if my vision has changed at all and see if we can look into prism glasses eventually. I will try to be more patient and hopefully my next visits to the eye doctor will be more optimistic. “Dream lofty dreams, and as you dream, so shall you become. Your vision is the promise of what you shall one day be. Your ideal is the prophecy of what you shall at last unveil.” ~James Allen
In the meantime, I will continue my blogging and on my gluten-free recipe blog that I created which I really have enjoyed trying to create delicious gluten-free recipes (www.glutenfreegesualdi.wordpress.com). I also enjoy my involvement in our young leadership group, COPE and plan on participating in Donate Life New Connecticut events and the American Liver Foundation’s “Liver Life Walk” each year annually. I have also joined Toastmasters International and after my first speech I won the “Kalley Award” for most impact on the speech and voted “best speech” of the night by the club! That felt pretty rewarding and things that like keep me motivated to keep going. You can also keep tabs on me and check my full story and pictures on my own personal website www.justsaymo.org!
I leave with this quote for myself, and for you as well. “If one advances confidently in the direction of his dreams, and endeavors to live the life which he has imagined, he will meet with success unexpected in common hours.” ~Henry David Thoreau
I have always had this thought in my head that I was going to do something great one day, but never knew what. I am constantly asking myself questions all of the time in regards to what I really want to do, but have never found any concrete answers, and it has been chipping away at me each and every day for years. I know what I like, but what do I love? What is my passion? What am I destined to do? Is this something I will be proud of ten years down the road? I’m 27, and I still don’t really have everything figured out; all I do know is that I don’t want to spend my life feeling “stuck” doing something that I find meaningless. I want to be able to look back on my life and be satisfied with who I am and what I have done.
Through self-interrogation, I’ve found that what makes me feel good is when I make other people feel good, especially about themselves, and that I want to make a difference in people’s lives; whether it is one person or potentially millions. I want to take my experiences, my mistakes, my regrets, my victories, everything, and be able to share what I have learned with people who are maybe in the same place I recently was. I want to show them that no matter how down or horrible life may seem at times, it is basically just testing you to “see whatcha got”. When you are confronted with a difficult situation or any obstruction, you have the choice to let it block your path and stop you from where you are going, or you have the choice to find a way around it and keep moving forward. I personally choose to knock my road-block down, right on it’s ass, screw the detour, and now I am traveling (slightly over the speed limit) cruising headed straight for “Achievement Avenue.” If you are headed in my direction I mostly certainly have room for you, but if you are headed south toward “Sink Town,” you might want to consider a boat to keep you afloat to get you to where you are going. Metaphors aside, most importantly, I am on the path in which I am proud of who I am and what I am doing.
So, I got “the feeling” that I can feel it in my gut, when something good or bad is going to happen. I am sometimes not very good at articulating these gut feelings into words that others will always understand. My gut has an innate ability to sense the good and the bad in the near future, and over-time I’ve learned that I need to just go with what my gut is trying to tell me. It is a tingling in my stomach, a subtle feeling of nauseousness, but I am able to differentiate it from being sick. Well, I got the feeling a few days ago, and today I have had it all day long, which somehow turned into me dancing and singing like a crazy fool around the house in my headphones singing Carly Rae Jepsen songs.
“Rise above the storm and you will find the sunshine” (Mario Fernandez). It couldn’t be more true for me right now. Last year, I basically experienced a living-hell. If you know me at all or have kept up with me via Facebook or my blogs you may know a little bit, or maybe even a lot about of what I’ve endured. The storm (more like a category 5 hurricane), came and went, the fog followed shortly after, and now I can finally see the sun peaking through the clouds.
As I mentioned earlier, I have always had in my mind that big things were eventually going to come my way, but I just didn’t really know what I wanted or where I wanted to direct my energy towards. My aunt has also always had a big vision of what her future would hold, which would include helping people in some way, but she wasn’t exactly sure how either. In the past couple of years she has been brainstorming several ideas, but it is not until I got ill, that Caryn and I realized that our own strengths and weaknesses complement each other, and we make a great team together.
With that being said, we have formed a community outreach group called COPE (Community Outreach for Purpose and Empowerment) which we have just recently launched this week. I have been working hard to put together the website, Facebook, Twitter, yada yada and it is up and running. Caryn has been really excited for COPE, and her energy feeds right into mine, and then I start to get excited. It’s hard to say exactly where we are going from here, but what I am certain of is that the combination of Caryn and myself with our driven, resilient minds, and huge dreams collaborating together, there is not a doubt in my mind that we are going to change people’s lives.
As horrific and terrifying this past spring/summer was for me, I could not be more thankful for everything that has resulted from it, because it has gotten me to this place that I am at now. Besides bringing me back home closer to my awesome, one-of-a-kind, loving family, my frame-of-mind is like it has never been before. I think it is a mind-set that I do not see many others experiencing for themselves. I am not convinced that many people out there dream like I dream. Even if they do dream big like me, the difference between my dreams and their dreams is that I actually believe that my dreams are going to come true. My aunt is the same way. That is why we make a great team together, and that is why COPE is going to be awesome; because we will not let the opportunity arise for it to fail.
This past year has been a test for me. I had many chances to give-up and throw the towel in. It was a test of my inner strength, a test of my character, and a test of who I am. Each illness or set-back I acquired was an obstacle. I had to be patient and overcome all of the “obstacles” thrown at me. It was, and still is difficult sometimes, to have your entire life changed. It has required great patience, and ask anyone in my family, “patience” isn’t exactly my greatest attribute. Somehow, I was victorious over impatience and even though I was deathly ill, I have been successful in overcoming every obstacle in my way thus far. I did not just overcome the obstacles, but in some ways, I came out even better than before I was sick.
I have learned so much in the last few months about life, about myself, and what is truly significant. I’m sure it is difficult to relate to me unless you have walked in my shoes, because I don’t even know that “me” a year ago could even relate to myself now, simply because I, myself, had never experienced anything of this magnitude or of this great importance before. I mean what is of greater importance than your own life? It took me practically dying on more than one occasion for me to come to the realization, that this is my life, this is my body. Any change I wish to see in myself, and any goals I want to pursue, has to start with me, and nobody else. I understand that what I went through is not exactly easy for everyone to relate to because they haven’t been in the same near-death situation, but what I can offer is a deeper appreciation for what is meaningful in life. No matter who you are, or what you do, something is of meaning to you, and I learned that no matter what you previously thought was of great meaning to you, nothing outweighs your family, friends, and most importantly yourself.
What I am here to say today is that everything that happened to me, happened for a reason. Of course, my life would be so much easier and less expensive if I did not need a liver transplant or two major brain surgeries, but it has made me who I am and the person I was supposed to become. I will embrace what I have learned and who I have become and live this new, totally different life-style with great meaning that I hope to share and inspire others within our newly-formed group, COPE, and in my day-to-day life as well.
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“Give me love
Give me love
Give me peace on earth
Give me light
Give me life
Keep me free from birth
Give me hope
Help me cope, with this heavy load
Trying to, touch and reach you with,
heart and soul”
My thoughts and prayers go out to the 26 victims, their families, and our grieving neighbors nearby in Newtown, CT. Teachers and staff of Sandy Hook Elementary risked their own lives to protect their students from an act of pure evil. Even with their heroism, twenty young and completely innocent children had their very short, and unfulfilled lives swept away from them forever without any warning. May their souls live in a better place than this cruel and selfish world.
That 14th day of December was a horrific and heartbreaking day and shall forever serve to remind every single one of us that life is not guaranteed for anyone of any age. Let the ones you love know you love them, for nothing is a certainty, and tomorrow is not guaranteed. To my family and my dearest friends, I love you with all of my heart, each and every day, and myself included, sometimes need to step back for a moment and really appreciate all of the beautiful and loving people in my life.
“Love life and life will love you back. Love people and they will love you back.” ~Arthur Rubinstein
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