2015 American Liver Foundation Liver Life Walk 

Dearest Just Say Mo supporters,

Thank you so very much for participating in the Liver Life Walk to raise funds and awareness for the American Liver Foundation again this year. On behalf of myself, a former liver disease patient, and the 30 million people who are currently living with liver disease, thank you for your support. There are over 100 types of liver disease that can affect men, women and children of all ages, so your support has contributed greatly in efforts to research, educate, and find ways to cure the disease.

It seemed like such a wonderful day! It means the world to me that you ladies went, wore my t-shirts, and represented Team Just Say Mo at the walk in my absence. I wish I could have been there, but with you ladies going it made me so incredibly happy! This year we raised a whooping $4,655 for the ALF, that is by far the most we’ve ever raised in the four times we’ve supported the walk!! Thank you to all of those that have supported me and my team over the years, I will never be able to thank you enough!

Much love,

Mo

#JustSayMo

Some of the 9-hole ladies at Tamarack Country Club walked at the Liver Life Walk in Stamford on September 27th.

The 9-holers and my second cousin Maryann at Commons Park Harbor Point in Stamford, CT for the 2015 American Liver Foundation Liver Life Walk.

IMG_2636

Team “Just Say Mo” over the years, 2012-2015.

 

 

 

My Speech for the 2013 Liver Life Walk, Fairfield County #JustSayMo

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 ūüôā

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!

Little Charlee, her mother and I cutting the ribbon to kick-off the 2013 Liver Life Walk, Fairfield County!

My First Public Service Announcement

Hey MOtivators!

Check out my first PSA (Public Service Announcement! The PSA was for the American Liver Foundation’s Liver Life Walk of Fairfield County. The walk will be held on Sunday, September 29th, at Harbor Point, in Fairfield County. Registration begins at 9 am!

I have been chosen as one of the Liver Life Champions this year along with the extremely adorable little girl, Charlie! This is the second year that my team “Just Say Mo” will be walking at the event, but this year, being one of the Liver Life Champions, it really means a lot to me to have your support!

For more information, please check out the website, and be sure to support “Just Say Mo”!! http://go.liverfoundation.org/site/TR?fr_id=3461&pg=entry

“Pain in the Aspergillus” & Homonymous Hemianopia (HH)

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 fatal¬†infection 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-cranitomy (top) and post-craniotomy (bottom).  You can see the infection in the white, and then where they removed it.  Notice how much swelling was present before my surgeries.

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.

They put a patch on my eye to try to minimize the flashing lights and extremely painful headaches

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).

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 hemianopsia (black is where I can not see)

My visual field test which shows homonymous hemiaopia (black is where I can not see)

My visual field test of the other eye shows almost exactly the same amount of visual field

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

MO in the Mirror

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 matching transplant in very late April 2012 just a few days before my transplant

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 transplant

Looking and feeling a million times better ready to celebrate the holidays with my family early December 2012

Looking 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

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 ūüôā