Here’s a short article that was published on page 12 of the December 2014 issue of the MET Golfer EXTRA.
http://www.metgolferdigital.com/i/436490
A special thanks to Chris Powers at the MET Golfer and Ted Schechter for getting me in touch with the MET PGA.
“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.
“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.”
[Pambakian, A L M & Kennard, C. (1997) Can Visual Function Be Restored in Homonymous Hemianopia Patients? British Journal of Ophthalmology, Vol. 81(4), 324-328, http://bjo.bmj.com/content/81/4/324.full%5D
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.
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.
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.
“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 : )
COPE (Community Outreach for Purpose and Empowerment)
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.
You can check out our website and other contact info at:
http://www.facebook.com/iwillcope
Twitter: iwillcope4me
Just Say Mo Foundation 