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.
May 2012, Yale-New Haven ICU awaiting a liver transplant.
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).
Aunt Caryn is my medical proxy, my Aunt, my friend, my “roommate,” and above all, my hero.
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 Furman University in Greenville, SC. My sophomore year I won the 2004 Lady Paladin Invitational with rounds of 69-70-74=223 (-3) claiming the individual title and helped my team capture the team title as well.
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.
This is how I had envisioned my life continuing to progress as a successful golfer, but I hit a road-block and took a detour somewhere along the way, but I am finally back on my track to achieving personal success.
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.”
Driving range, July 2013.
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
Photo of me from the ING Hartford Marathon (5K) running for team “Donate Life Connecticut” on October 12, 2013.
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.
Much love,
Mo
Little Charlee, her mother and I cutting the ribbon to kick-off the 2013 Liver Life Walk, Fairfield County!
“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.)
MRi pre-cranitomies (top) and post-craniotomies (bottom). The white identifies the infection, invasive aspergillus.
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.
Staples in my head after my first brain surgery. That wasn’t so bad, with a little glitter I might look like I fit in for a Ke$ha music video. Bling, bling.
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.
For my second brain surgery they shaved the hair down the middle of my head and my head and stitches were used instead of staples. This look, which I called the “Reverse MO-hawk” was a lot more noticeable than my staples.
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.
Encouragement, love, support, prayers, and positive attitude is what got me through.
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 : )
In the hospital post second brain surgery, June 2012 vs. May 3, 2013. I don’t even believe it sometimes.
Michael Jackson took the words right out of my mouth….
“I’m Gonna Make A Change,
For Once In My Life
It’s Gonna Feel Real Good,
Gonna Make A Difference
Gonna Make It Right . . .”
“I’m starting with the Mo in the mirror,
I’m asking her to change her ways
No Message Could Have
Been Any Clearer
If You Wanna Make The World
A Better Place
Take A Look At Yourself And
Then Make A Change…..”
Me, jaundiced, hooked up to my IV patiently waiting with my cousin, Courtney, for a match for a liver transplant in very late April 2012 just a few days prior to my transplantLooking and feeling a million times better ready to celebrate the holidays with my family early December 2012 a short 7 months later
Ever since I was hospitalized (first in Greenville in March and then at Yale in April), I have had no choice to make so many drastic modifications to my lifestyle in order to be healthy and stay alive. A transplant results in no drinking, no smoking, no raw sushi, and no salad bars just to name a few restrictions. I continually work out, and I am now fully dedicated to adhering to a gluten-free diet (in result of being diagnosed with Celiac Disease).
After my transplant and brain surgeries, I was having to swallow 46 pills a day, 46! Excuse my French, but holy $hi+ that is a lot of pills! I now am currently down to 29 pills/day, which is significantly less, but I still feel like an 80-year old doing organizing my weekly pills in one of those Monday-Sunday pill containers.
Swallowing a meal-full of pills several times-a-day, with all of the side-effects, on-top of feeling like my body had been run over by a16-wheeler was not fun. I could hardly perform simple tasks that you would never even think twice about doing like: walking, going to the rest-room by myself, getting my shoes/socks on without help, showering without sitting in a chair, without being constantly babysat.
One of my favorite lines in Adam Sandler’s “Big Daddy” is when Adam’s adopted son yells, “I wipe my own ass! I wipe my own ass!” The thought of this scene makes me chuckle to myself, and let me tell you why: when I was confided to the hospital bed (attached to what felt like enough wires to light up a Christmas tree), I couldn’t use the rest-room as I pleased. If I had to go #2, I had to buzz the nurse, wait for someone to bring me a bucket, do my thing, and then get my ass wiped, not by me, all while laying in bed (I am very good at back bridges when I do my workouts now haha). Talk about feeling violated, and privacy? Ha, I have lost all concept of what that is after my 52 days spent between the ICU and the transplant floor.
I endured a total of 71 days of hospitalization in the year 2013 which I later reflected on. I missed out on most of the spring starting in mid-March going through the end of April, the entire month of May, and half of June from the outside world being locked up in the hospital (except for a brief two-week hiatus when I moved from Greenville, SC to Danbury, CT). While it was a great feeling to be out of the hospital, I wasn’t exactly “free” and nowhere near being back to “normal”. I am not allowed to drive because of my visual field impairment which is not expected to come back (I have lost my peripheral vision in both my right and left eyes to the right, so unless something is directly in-front of me I can not see anything to my right-side).
My hair is finally filling in from where it was shaved in a line straight down the middle of my head for surgery. It is no longer falling out, which is very awesome to not have to pull handfuls of hair out of the drain every day. Since it is filling in, I no longer have to sport what I named a “Reverse MO-hawk.” I have gone from being completely independent and living on my own, to moving into my grandparent’s house. My grandparents are snow birds, so as they flocked to Florida for the cold winter months, I moved-in with my aunt and uncle and their two teenage boys, my cousins Robby and Rocco. I love my cousins, they are like my little bros, but if Call of Duty was never invented I think I would totally be okay with that.
My friends live in various states across the country, and I have no one besides my family here in Danbury. When I say no one, I mean no one. I love my family dearly with all of my heart, but sometimes I just want to be able to hang out with my friends, go out for a drive to clear my mind, or go to the store alone. It are those “little things” in life that I can no longer do anymore that I long desire.
I never realized how valuable those little things were to me, until they were no longer readily accessible to me. While my recovery is improving gradually and I am feeling much better, it still does not dismiss the fact that I am not exactly living the lifestyle of a normal mid-20-something year old.
The first few months after I was discharged, I wasn’t allowed to be home alone. There was a chance I could have more seizures, or fall, or that something else could easily go wrong with me. It is nice to have people around and be there for you, but everyone needs a breather by themselves every once in awhile; it is too often I lock myself away to catch a “breather” away from everyone else.
Although I’ve had to do a complete 180 with my life, I don’t wish to go back to the way I was living, not even for one second. I was going down a dead-end road, and wasn’t paying attention to the signs to tell me to pump the brakes and turn around. Sure I was having the time of my life, but deep down I wasn’t really happy with myself. Each day felt unfulfilled and I was yearning to do something with my life that was actually admirable. I wanted to feel proud of myself like I had once felt in my junior golf and college days.
Now, I finally am proud of myself again. I look in the mirror each day and I am in shock. Each day I see myself and when I see the “Mo in the Mirror” I’m like, “Wow, Mo, you’ve come such a long way, in such a short amount of time.” That feeling that I get when I see the new, improved, healthy Mo is what gives me the “Mo-tivation” to keep trucking along and give each day everything I have to offer.
Besides doing physical therapy I keep myself active each and every day. My over-anxious-self tried doing the Insanity work-outs within the first two months of being discharged, and that was probably the most idiotic set-back of my whole healing experience. Even though my mind was ready, my body was no where near being ready for that kind of physical activity and movement. So after that set-back and spending the last few months trying to heal from those injuries, I now finally feel SO much better and I can now begin to increase my physical activity gradually.
On Sept. 30, 2012, I participated in the Liver Life Walk held in Stamford, CT and walked 3-miles, which is my farthest recorded walking distance since being discharged from Yale in June. A few days after the Liver Life Walk, I felt like a small car ran me over, but that is definitely better than a 16-wheeler! My legs were giving me large amounts of trouble, so unfortunately, I regressed once again. I continued out-patient physical therapy and ended that treatment in early November. Now, on my own, I work out in my aunt and uncle’s house with their treadmill, small weights, resistance bands, swiss ball, and use my own body strength with certain exercises and yoga poses. I walk a minimum of a mile each day, and sometimes I go up to 2.5 miles. My times have continued to improve as I continue to get stronger and gain more endurance. I incorporate a minimum of 100 crunches or similar type exercises to strengthen my core because that is very important to getting my entire body stronger.
I started off doing around 25-minute miles. I didn’t really keep track of my times at first because I was so slow–“Slow-Mo” you could call me, ha. Now I have started to keep track, because comparing times is really the only way to truly know if I am getting quicker or not.
Two-weeks ago, I did a 19:00 mile, two days after that I did it in 17:52, and the day after that I pushed myself really hard and did the mile in 14:09! Of course that is not an awesome speed or anything but I did shed over three-minutes in one-day, and with these chicken legs and everything else considering, that is a pretty big accomplishment! I left the treadmill with a big smile and felt pretty proud of myself, ready to set my next mile mark for 13:30.
On January 9th, 2013 I ran the mile in 10:39! I was so excited and proud of myself. Yes, my legs did hurt and I had to take-it-easy for a few weeks after that, but it was very much worth the gratification of kicking so much ass!
Ran the mile in 10:39 just 7 months after discharge in June when I was hardly able to walk from one side of the house to the other
Everyone is different in what motivates and inspires them to succeed, but I have found that my “mo-tivation” comes from seeing the results. When you can actually see a difference or a change for the better, that makes you feel like all of the hard-work you put-in is actually paying-off; and that is a damn good feeling. When you can look at the clock and see your times have gone down, or you can see in the mirror the physical changes taking place, that is fulfilling. I don’t know if it is the same feeling for you, but it gives me the inner drive to set goals and work harder at attaining them. I will work until I reach that goal, and then once I reach it, because I WILL reach it (and not let anything stop me), I then set higher goals to achieve.
I believe if you have a fierce mentality, you believe in your goal, and put the work into it, you can do anything you dream of. You have to believe in your goal, but most importantly you have to believe in yourself. When you can get to that point, the work won’t seem like work, it will be overshadowed by your strong desire to succeed, and you will succeed.
One thing that I have found that is critical to achieving almost anything, is having patience. I am half-Italian and my last name is Gesualdi, so being patient isn’t exactly a characteristic that comes naturally for me. I have never really been patient in my life, but somehow, somewhere, during my ill-times, I dug very deep, the deepest I hope I will ever have to dig again, and found this patience with-in me that I never had before. My family was shocked. I was even shocked. It came out of nowhere. I don’t really care where it came from, but it was there, and it was crucial to saving my life. Without that patience I could have so easily given-up each and every time a doctor gave me negative news that pretty much suggested I had a greater chance of dying than living. Like I’ve said before, I firmly believe in mind over matter, and that is what got me through.
If you want to make a change, you have to start with yourself. It feels real good, it makes a difference, and it makes it right. That’s why I want you to know, I started with the “Mo in the Mirror”, and if I can do it, so can you, and so can anyone, you just have to believe you can 🙂
Just Say Mo Foundation 