Sugar & Strength Blog-“When Were You Faced With a Challenge & Came Out Stronger Because of It?”

Hello friends, family, and followers,

My blog posts have been far and few between over these last couple of years, but today I would like to share a featured piece in the “Sugar & Strength” blog which highlights overcoming my liver transplant and brain surgeries back in 2012.  Thank you to Annie Lake for this blog, and please check out her blog “Sugar & Strength!”

Click here to read the blog: http://www.sugarandstrength.com/?p=423

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LPGA Class A Baby! #Passed

Last night I received some very exciting news: After submitting all observations, passing my practical & written exams, and submitting & passing on my 43-page paper, I have officially passed Level III of LPGA Teaching & Club Pro certification and have obtained my Class A status! 

 This is so much more than an email or a piece of paper to me; less than 5 years ago I was fighting hard for my life, and then the odds are nearly 99.9% against you, it would have just been easier to give up. After successfully surviving a last-minute liver transplant followed by two life-saving brain surgeries, the road to recovery was the highest mountain I have ever had to climb, but at least the opportunity to have a second chance at life was available thanks to my Uncle’s wife, Cindy who got me connected to Dr. Manuel Rodriguez Davalos at Yale-New Haven Transplant Center. The tranplant would have not been possible without the amazing help from Dr. R, Dr. Schilsky, the Yale Transplant staff, and my supportive family. 

My transplant followed with two years of of a variety of much needed therapies that included physical, occupational, speech, visual & psychotherapy, multiple times per week and transplant and infectious disease check-ups every few months until I finally had the health, strength, and doctor’s approval to get back to working. 

The next obstacle would be, well how do you get to and from work every day when your half-blind out of each of your eyes resulting in no peripheral vision to the right and not permitted to drive? You seek out a highly recommended behavioral ophthalmologist named Randy Schulman (thanks Kristine Loo for the referral). You attend weekly visual therapy sessions from one of the best, April Banores Barna, do all of your visually therapy exercises every night, and say a lot of prayers that some of your vision comes back. When you get word that some of your vision has improved, you feel another miracle has happened! Has enough perioheral vision returned? Is it possibly enough to see a driver rehab specialist? You reach out to your Uncle’s wife Cindy who recommended Howard J. Knepler and Knepler driving school and see if your eligible for driver rehabilitation. When you are, and you pass driver rehab, and driving again is no longer an impossibility, rather driving again becomes another accomplished goal despite the improbable odds against success, you become the happiest person alive! 

With the rate I was going, NOTHING seemed too out of reach for me, rather everything just required vision (no pun intended ;), determination,persistence, and patience. This is when I decided I was going to take this opportunity to pursue a career that I regretfully never pursued post-college. I gave up on it before I ever began it, and here was my perfect chance to have a go at it. Since the age of 11 I always wanted and thought I was going to become a Golf Pro, but now the decision was made, my mind my committed, just tell me how to get there. 

Some four-and-a-half years post transplant and brain surgeries, two years post driving, and two years working towards my LPGA certification, here I am, a Class A Member! I may have reached the top of this mountain, but there are many more mountains which I am determined to climb, the next being a PGA Class A member.  Thank you for any and all who have helped me get to where I am today, I couldn’t have done anything alone. Your encouragement and support has been the vital fuel when my tank seemed empty. I am so grateful for all life has blessed me with, my family and friends, my health, and now my Class A LPGA! When life blesses me with a chance to play golf with  my favorite celebrity of all-time, Justin Timberlake via the Ellen Show, that will just be the cherry on top! (Just throwing that out that since I’ve had a pretty success rate with the Gods so far!; ) Until the next mountain to climb…

The First Tee: Girls Day Out

I had a great time volunteering this past weekend with The First Tee of North Florida for a Girls Day Out day! It’s so great to see so many young girls taking an interest in the game! The First Tee and Girls Golf are doing such a great job of growing the game! 🏌💪

First Tee 2.20.16

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.

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

 

 

 

Girls to the Tee

Girls to the Tee Draws Record Number of Participants Girls to the Tee Draws Record Number of Participants
 I had the privilege to volunteer at “Girls to the Tee,” an event which drew over 110 young female participants to Westchester Country Club. I was in awe of the number of girls present from all different ages ranging from the early elementary level to late high school. It was such an honor and pleasure to be actively assisting so many willing and eager youngsters.  I greatly enjoyed being a part of this great event and look forward to any future opportunities that I can help grow the game, especially if it gets more girls to the tee! 😃

To read the article posted in The Journal News, click here.  

“Just Say Mo” MET Golfer Extra (December 2014)

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

Just Say Mo--MET Golfer Extra December 2014

Just Say Mo–MET Golfer Extra December 2014

A special thanks to Chris Powers at the MET Golfer and Ted Schechter for getting me in touch with the MET PGA.

Link

“Danbury’s Monique Gesualdi Meets PGA Pro Golfer & Fellow Transplant Recipient Erik Compton”

Dearest family, friends, and supporters,
Here is the full four-minute story that aired on the 7 o’clock news on WFSB Channel 3 this evening. Thank you to John Holt for putting together an amazing story! I also want to say thank you to all of my family, friends, and supporters who have been there for me through every up-and-down over the years, as well as a very special thank you to my anonymous organ donor who has given me a second go at life. This new life has given a whole new appreciation for what life really is about and reinvigorated my drive to live a life of purpose and ultimate meaning. I had long been searching for a “passion” that would bring a sense of fulfillment to my life, and it wasn’t until my organ donation until I truly knew what I was supposed to be doing with my life. Now I am certain that no matter what I am doing, where I am doing it, or who I am with, that I will be raising awareness about the life-saving benefits about organ/tissue donation with a piece of my donor guiding me every step of the way. Thank you all again, and I hope you enjoy the video! 

P.S. Maybe we get this hands of The Ellen DeGeneres Show so I can accomplish my next mission of spreading awareness about organ/tissue donation on her show!  Thank you for all of your help and support in helping me reach this goal that I am determined to accomplish!

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How Organ Donation Has Saved My Life

April is Donate Life Month!

 

“You were born with the ability to change someone’s life.  Don’t ever waste it.”  ~Unknown

April is Donate Life Awareness Month, so for the month of April I will be raising awareness and sharing stories about organ donation and how it has saved my life, and the lives of millions of others.

On May 3, 2012, I received my life-saving liver transplant from an anonymous donor, forever changing my life.  I am not only beyond grateful for this second chance at life, but I am also thrilled at the opportunity to make a difference in other people’s lives by inspiring others to become registered organ donors.

Since my liver transplant, which occurred two-years ago (this May 3rd), I have run in five 5Ks and broken 80 several times on the golf course.  I’ve gone to see Justin Timberlake, Bon Jovi, Taylor Swift, Jason Aldean, and FL/GA Line perform live. I had the honor of meeting Mr. Shark Tank, Mark Cuban, at my best friend’s wedding to NHL Dallas Super “Star” Mike Modano. I have also proudly been the American Liver Foundation’s Liver Life Champion in which I have given several public speeches about my story and also filmed a Public Service Announcement in efforts to raise awareness about the life-saving benefits of registering to be an organ/tissue/blood donor.

Mark Cuban came up to me and said, "Hi Mo. Mark Cuban.  Mike has told me so much about you..." at my best friend Allison Micheletti's wedding in Dallas, TX in September of 2013.

Mark Cuban came up to me and said, “Hi Mo. Mark Cuban. Mike has told me so much about you…” at my best friend Allison Micheletti’s wedding in Dallas, TX in September of 2013.

This summer, I will be competing nationally in my first Transplant Games of America, against other transplant recipients and donors in golf, 5K, and two other sporting events of my choice!  Also this summer, my childhood dreams will finally come true when I get to see Justin Timberlake perform live at the Mohegan Sun Arena, in Uncasville, CT 🙂

None of this would be possible if it wasn’t for an anonymous donor who decided one day to check “yes,” yes, I will be a registered organ donor.  That is it, one simple, effortless “yes” which at the time meant probably nothing to him/her, but that one little “yes” has allowed me to do all of the great things that I have mentioned above.

Growing up, I was very determined, hard-working, and had a relentless passion to succeed.  The drive I innately had as a youngster began to fade and transform into uncertainty and doubt mid-way through my collegiate career.  After I graduated from college, I felt very lost in direction and in purpose.  My purpose in life was nothing but unclear, habitually wreaking  havoc within my soul.    Somewhere along the round I had fallen into a repetitive routine of nothingness.  “What am I doing with my life?” I wasn’t pursuing my dreams, and I was not engaging or a part of anything that felt fulfilling and made the heart and core of myself smile.  Maybe perhaps it was no coincidence that I became fatally ill, because honestly, my soul had felt dead for years.

On May 3, 2012 I had my life-saving liver transplant from an anonymous organ donor.

On May 3, 2012 I had my life-saving liver transplant from an anonymous organ donor.

In March of 2012 I diagnosed with stage-4 Liver Cirrhosis, with the initial diagnosis due to Budd Chiari and Factor V Leiden.  I oddly didn’t see my diagnosis as a misfortune, rather, I saw it as an opportunity–an opportunity to change my life, an opportunity to regain my purpose, and an opportunity to impact the lives of others.  My illness resparked my drive and passion to succeed; it lit a fire under my inner competitor, and my inner competitor perceived my illness as a challenge. This wasn’t your routine challenge though, I was facing undoubtedly one of the toughest and most fierce competitors l have ever had to face: I was up against death.

During my liver biopsy at Yale, my liver was accidentally “nicked” which caused unnoticed internally bleeding until one evening on the way to the bathroom, I just collapsed.  “Code Blue! Code Blue!” I could faintly hear as my eyes shut. Several episodes of cardiac arrest ensued with the likelihood that my last days were behind me if a liver match was not found in the next 24 hours.  With the National Average wait-time for a liver match being 361 days, it seemed like I was going to need a miracle to survive. You may not believe in miracles, but You might want to start.

Within 24-hours of my death-defying experience, my medical team at Yale-New Haven started prepping me for liver transplant–word had gotten out there was a potential matching donor for me.  The stars aligned in my favor, and on May 3, 2012, I was a recipient of a last-minute, life-saving liver transplant from an anonymous organ donor.

While it was amazing when I had finally awoken from the anesthesia to find out that I had a liver transplant, I did not have much time to be grateful before complications from the transplant unfolded.  A fungal infection, known as invasive aspergillosis, had manifested within my respiratory system, travelled into my bloodstream, up to my brain, and manifested into a serious and highly fatal infection.  My body was too weak from surgery and immunosuppressive medication to battle the infection at its infancy stages like a “normal” person’s immune system would have, and so it aggressively started to cause destruction in the occipital lobe of my brain.

Invasive aspergillosis in immunosuppressed patients has a an extremely high mortality rate, approaching near 100%.  Despite these odds, my medical team worked very hard at keeping me alive.  I underwent two extremely risky brain surgeries combined with intensive six-seven hours of invasive anti-fungal treatment every night for several months.

Whether the brain surgeries and anti-fungal treatment would save my life was a question that even the top medical surgeons in the country at Yale didn’t know the answer to.  All we could do was give it our best shot, pray for a miracle, and sit back and see how my destiny would unfold.

After the second brain surgery at Yale to remove a fatal fungal I acquired in my brain as a result of a weak immune system post-transplant.

After the second brain surgery at Yale to remove a fatal fungal I acquired in my brain as a result of a weak immune system post-transplant.

According to medical statistics and previous transplant patients who have acquired invasive aspergillosis in their brain, it is utterly unjustifiable as to why I am alive today.  While the statistics and my doctors may not be able to explain why or how I became so ill, so quickly, or even how or why I have survived these several life-threatening illnesses and surgeries all back-to-back-to-back in such a short time, all I do know for certain is that I am thankful.  Thankful for my family, thankful for my friends, and most importantly thankful for my donor, their family, and their generous donation.  The whys and hows of my survival really don’t matter; what matters is that I am alive, I am doing fantastic, and I am ready to change the lives of others.

My story of survival is one that I believe all throughout the world need to hear. I am living-proof of the life-saving benefits of organ donation. Because my anonymous donor was registered as an organ/tissue donor, his/her selfless act saved my life along with saving or enhancing the lives of 14 others on that third day of May. Currently, 18 people die each day because there is a shortage of registered donors on the list.  Eighteen people every day, thousands each year, could be saved and have a second chance like I did, if we all checked “Yes, I want to become a registered organ donor.”  One organ donor can save up to eight lives and enhance the lives of up to 50 people!  A swift check of “yes” is all it takes to saves lives and be a hero to someone and someone’s loved ones.

Before my liver transplant and brain surgeries in May/June of 2012.

Top: Before my liver transplant in May 2012.  Bottom: April 2013, a bridesmaid at my best friend’s wedding, and Sept 2013, cutting the ribbon to kick-off the 2013 the American Liver Foundation’s Liver Life Walk in Stamford, CT.

You might be supportive of organ donation, but are you a registered donor?  As Benjamin Franklin once said, “Don’t put off tomorrow what you can do today.”  Don’t wait, donate. 

For more information about organ donation and becoming a registered donor, please visit these websites:

UNOS-United Network for Organ Sharing  www.unos.org

Donate Life America-www.donatelife.net

Watch my video and see exactly how organ donation has saved my life “The MOtivational MOvie” which shows my two-year journey of having a life-saving liver transplant, brain surgeries, and my life as a survivor.

 

April is Donate Life Awareness Month!

As you may already know, it is my dream to get on The Ellen DeGeneres Show and raise awareness about organ/tissue donation. I have made a short-movie called the “MOtivational MOvie” about my journey of overcoming a life-saving liver transplant and a fatal fungal infection in my brain that I acquired post-transplant (which has nearly a 100% mortality rate in transplant patients).

Organ Donation Month happens to be right around the corner during the month of April, so there is no better time to share this video than now : ) Please help me share “The MOtivational MOvie” so it can get into the hands of Ellen, and also raise awareness about the power of organ donation! Thank you so much for your support and helping me make my dreams come true!

To register to be an organ donor online, please go to www.donatelife.net
Follow the MOtivational MOvement at: www.justsaymo.org

 

Transplant Games of America, Here I Come!

The 2014 Transplant Games of America will be held in Houston, TX July 11-15!

The 2014 Transplant Games of America will be held in Houston, TX July 11-15!

Dearest friends, family, and supporters,

I am overwhelmed with gratitude and excitement to announce that I will be participating in the Transplant Games of America in Houston, TX, July 11-15!  I will be representing the Transplant Team of Connecticut in the Golf, 5K and two other sporting events of my choice!  This life-saving organ donation has given me an opportunity to lead a life with meaning and purpose, honor those affected by transplants, and inspire others to save lives through the generosity of organ donation.

Participating in the Transplant Games just two years after my miraculous transplant and brain surgeries is a dream come true!  I am so excited at this amazing opportunity to travel, meet fellow transplant recipients and donors, and get back to my athletic roots!  In order to make this dream become a reality, I need some serious help fundraising.  This year it will cost an estimated $50,000 to send the Transplant Team of Connecticut to the games.  In order to afford this, I will be setting up a personal donation page to raise a goal of $2,500 for my participation.

If you are interested in donating so I can compete at the Transplant Games of America, please visit my GOFundMe page at http://www.gofundme.com/JustSayMo

The Transplant Team of Connecticut, Inc. is a tax-deductible, 501c(3) non-profit organization.  Personal checks can be mailed to: PO Box 1073 SMS, Fairfield, CT 06825 with the memo: “In support of Monique Gesualdi.”  (Tax ID#08-0778187).

Thank you so much for your continued support and I CAN NOT wait to make you proud at the Transplant Games in July!

Sincerely,

Before and After, March 2012-April 2013.
Mo Gesualdi
Danbury, CT
www.justsaymo.org 
http://www.transplantteamofconnecticut.org/ and “Like” us on Facebook to get updates! 

HOLE-y MO-y

“Acceptance of what has happened is the first step to overcoming the consequences of any misfortune.” ~William James

Two-years ago around this time I was diagnosed with Stage-4 Liver Cirrhosis initially diagnosed due to Budd Chiari and Factor V Leiden and told I needed a liver transplant in the next few months if I was going to survive.  Shortly after getting a transplant by the skin of my teeth, I barely escaped with my life again as I battled a rare and extremely fatal fungal infection in my brain called “Aspergillus Fumigatus.”

Let me give you a little background information.  I was living in Greenville, SC at the time when I first got this news that I needed a liver transplant to survive.  There are no transplant centers in Greenville, so it was looking like I was going to have move near a transplant hospital.  I guess you could say, “luckily” for me, I was already packed, because I was in the midst of packing to move to Florida for a new career.  What I did not know, was that my fate would point me back up to the Northeast, to Connecticut, where my life began, and might unfortunately end, if I didn’t get a transplant, soon.

My liver was accidentally “nicked” during my liver biopsy which went undiscovered until I collapsed on the floor one night in an attempt to go to the restroom.  I almost bled to death from substantial amounts of internal bleeding, followed by four episodes of cardiac arrest; things were not looking too good at all.  Miraculously, my doctors were able to stabilize me without being invasive and officially get me on the transplant list.  Within two days of officially getting on “The List”, I officially received the greatest miracle of all, a second chance at life!

Shortly after my transplant, I exhibited some serious cognitive dysfunction.  I was in-and-out of a “coma-like” state, and other times I was only able to say “yes ma’am” repeatedly over-and-over again.  I began experiencing painful and distracting visual sensations, such as:  colorful lights flashing, hearing voices, and a headache so bad, I would trade it for the worst migraine you think you’ve ever had, any day. I mentally checked-out for several days to one day awake to the comment, “You had brain surgery!”  Excuse me?  What did you say?  “You had brain surgery!”  I palmed the back of my head, and sure-enough, there was a line of staples going down the middle of my scalp.  There was absolutely no other thought in my head at the time except, you’ve got to be effin’ kidding me?  

Not even three-weeks after barely squeaking away with my life with a last-minute liver transplant, and now they’re telling me I had brain surgery?  What for? I wondered.  Well those headaches, flashing lights, and voices were being caused by a rare fungal-infection that had manifested in my brain somehow since first being on immunosuppression in Greenville.  

It is unfathomable to express everything going on inside my head (literally and figuratively) at this time, but I couldn’t focus on any of that.  My brain surgeon at Yale, Dr. Matouk, was unable to get all of the infection out in the first shot because there was great fear of leaving me completely blind, paralyzed, or possibly killing me due to its location in my brain.  This monster of a fungal-infection had a name, and it was called aspergillus fumigatus; all I knew is that the aspergillus had to get-going, or it was going to be me that would be going….and never returning.

The following week I was hooked-up to an IV of this antifungal medication called Amphotericin B for six or more hours per night.  Amphotericin B is highly toxic and it’s side-effects are what I would imagine are somewhat similar to chemotherapy; god-awful. Ampho wreaks havoc both internally and externally to the point where my various medical teams had to come to a consensus as to whether my body could tolerate the medication any longer before it would cause my kidneys to fail; yet, I needed enough of the medication to zap the fungal infection in brain or that’s another (even worse) kind of trouble we’d be dealing with. A week following the Ampho treatment, my MRI showed no improvement in terminating the remainder of the infection, therefore, a second craniotomy was immediately scheduled.  Brain surgery numero dos went down on June 11, 2012, but whether I would make it out of surgery alive and not paralyzed or completely blind, was something no one could answer.

Top photos: Post-transplant, pre-brain surgeries, May 2012. Bottom photos:  Post-transplant, and two craniotomies (brain surgeries).

Top photos: Post-transplant, pre-brain surgeries, May 2012.
Bottom photos: Post-transplant, and two craniotomies (brain surgeries).

When I came back to consciousness the next day, there were doctors and family standing all-around me.  “What is your name?” I was asked to write.  My Aunt Caryn told me that my neurosurgeon thought there was an issue with me when I wrote down “Mo” because he only knew me by Monique.  He asked me to read something from across the room and write it down, so I did, without any problems.  My Aunt Caryn recalls him almost falling over in disbelief and excitement that I could read.  Next, my sister asked me her name and I wrote down, “Punkass” a nickname I have loved calling her since she was a teenager, (that she doesn’t appreciate as much as I do J).  Hey, well at least they knew they didn’t cut out my sense of humor during surgery!

Flash forward to 20 months later, which happened to be yesterday, March 13, 2014. I am the polar-opposite of a “morning person,” but at 6:15 am yesterday I flew out of bed, hopped in the shower, and excitedly got ready to head to Yale-New Haven for my three doctor’s appointments.  You’re probably thinking, wait you got excited to go to a doctor’s appointment?   Well when are taking this medication that consists of 12 pills/day, costs $4400/month, and makes you really sensitive to the sun and light, you would thrilled to go to your doctor if you thought he was taking you off of that medication today, wouldn’t you?

Following my Transplant Dermatology appointment and MRI of my brain. I met with Dr. Topal, my Infectious Disease doctor.  Dr. Topal, reviewed by MRI of my brain with me, and just as I had anticipated, I can come off of the Voriconazole (anti-fungal for my brain infection).  As long as the Aspergillus doesn’t come back, I will not have to take it, but the next three months they are going to watch me very carefully hoping it doesn’t come back.  The thing about fungus is it usually grows very slowly, but because I’m on medication to weaken my immune system (so I don’t reject my transplanted liver), I can get ill and catch diseases that “normal” people’s immune systems can usually fend-off quite easily.  The Voriconazole increased the potency of my anti-rejection drugs, so now that I am getting off the Vori, my doctors will be increasing my anti-rejection meds, which means my immune system will be weaker, and the risk of the aspergillus (if it is microscopically still present in my body at all) can try to attack my brain again.

My brain scan, 3/13/14 at Yale-New Haven Hospital.  While I anticipated much of this news, what I did not expect was my MRI scan to look like this: HOLE-y MO-y!

My brain scan, 3/13/14 at Yale-New Haven Hospital. While I anticipated being taken off the Voriconazole, what I did not expect was my MRI scan to look like this: HOLE-y MO-y!  I showed my grandma and her reply was, “Now I know what is wrong with you.”  She’s quite the comedian, haha.

That sounds pretty serious, but I’m not scared at all.  This June will be two-years since I survived my brain surgeries to remove the aspergillus.  People have brain surgeries every day across the world, but for a transplant patient to have brain surgery, twice, to remove aspergillus fumigatus, which has almost a 100% mortality rate in transplant patients, is unbelievable.  Not to mention, just three very short weeks after battling for my life and having a new organ transplanted into my body, there is no other word for it besides it is a miracle!

I am so blessed to be a miracle, but it is not because of what I did, it is because I have the most incredible medical team constantly looking out for my well-being, the most wonderful friends and family constantly motivating me with their love and encouragement to do great things, and finally, because I have embraced a belief system that anything in the world is possible if you set your mind to it.  My mind is set on achieving these great-big dreams of mine, like winning the Gold Medal in Golf at the Transplant Games of America and being on the Ellen DeGeneres Show to raise awareness about organ/tissue donation.  I know I am a miracle, and I am beyond thankful to have been given this gift of life, and a chance to change my life for the better and inspire others along the way.

One thing I want you know is that you don’t have to have a liver transplant or have a huge hole in your head to do great things in your life.  For me, it took me as sick I became to finally listen to that voice inside my head telling me take care of myself, and not just my body, but my mind, and my soul as well.  If I didn’t get sick, I probably would have never changed my ways.  The matter of the fact is, getting sick and being on my death-bed was the eye-opener I needed to make the changes I needed to make in myself so that I could be the best person that I can possibly be and reach my highest potential in life.

In result of my experiences, I have been given a story, a story in which I share in hopes to invigorate your childhood dreams, inspire you to make choices that fulfil your inner passions, and to believe that you are indeed capable of doing anything in life that you so desire.  My sickness wasn’t a curse; it was a blessing in disguise.  It saved me from own worst enemy: myself.  I hope to make you guys proud as my journey continues, but most importantly I am on the path to make myself proud, a self that had been lost for years, but is finally found 🙂

“If you don’t get lost, there’s a chance you may never be found.”  ~Unknown

Determined to Make a Difference with Ellen DeGeneres

“It’s our challenges and obstacles that give us layers of depth and make us interesting.  Are they fun they happen?  No. But they are what makes us unique. And that’s what I know for sure….I think.”~ Ellen DeGeneres

Yesterday at our COPE (Community Outreach for Purpose & Empowerment) meeting, we had a wonderful guest speaker, Ellen Boyle.  Ellen has endured some hardships throughout her life, but you would never know it as she radiates strength, determination, and happiness. One of the things that stuck in my head from her speech was when she our group members, What makes your heart sing?”

As she called upon me, I fumbled my words, not knowing the true answer to that question.  I mean…I enjoy many things:  golf, working out, writing, Justin Timberlake, but I didn’t think any of those things were the answer to her question, she was looking for something much deeper, as was I.

Ellen went around the room repeatedly kept saying, “Don’t die with the music in you.  Don’t die with the music in you.”  This quote from Wayne Dyer immediately opened my eyes as to what Ellen was hoping we would tap-into ourselves.

Maybe you, like myself, in your mid-20’s had that moment when you thought, “What am I doing with my life? What is my purpose? Is this it for the rest of my life?”  If you’re like me, you realize you are fortunate to have food and shelter everyday, as there are many people who do not share your same privileges: Yet, something is missing.  There is a void and you want more.  But what, what is it that I’m searching for?

Ellen nailed it.  Don’t die with the music in you, but rather, share your music, and make a difference in someone else’s life.  Whether you accept to recognize it or not, we are all talented human-beings in one-way or another.  Go out and make a difference in someone else’s life every, single, day.  It doesn’t have to be a big favor or gesture, it can be simple, like: saying “hi” to a stranger, making dinner for your busy roommate/spouse, or giving a nice big-fat hug to that person who hasn’t smiled in days.  Do SOMETHING to make a difference in someone else’s life and you will begin to notice that “void” you were once trying to fill, is now overflowing with love and gratitude.  Then, not only have you filled your own empty void, but more importantly, you will also make someone else’s day a little bit brighter; and that my friends, is what will make your heart sing.

Speaking of “Ellen”, and making someone else’s day a little brighter, Ellen DeGeneres is notorious for putting a smile on people’s faces across the world!  For that reason, she is one of my idols, and like both Ellens, I want to make a difference in the world.

It is my ultimate goal to get on The Ellen DeGeneres Show, to not only meet my idol, but to raise awareness about an organization I genuinely support: Donate Life.  

After receiving a miraculous liver transplant and surviving two risky brain surgeries that have an almost non-existent survival rate, I know what it truly means to be given a second chance.  My body wasn’t the only one that got a second chance; my soul was completely rejuvenated, as well.  I am so grateful for this opportunity to have a fresh start and to make a difference, not only in my life, but in the lives of many others. As a recipient of a life-saving transplant, it is my responsibility to raise awareness about the importance of becoming a registered organ/tissue donor.  

April is National Donate Life Awareness Month, and I think there is no better time to get on The Ellen Show than in April, but I need all of the help that I can get, so dearest friends, family, and acquaintances, I ask you to share this with your fellow peers in hopes to somehow get my story in the hands of Ellen DeGeneres.

Here is my Facebook post to Ellen which has almost 60 shares and 150 likes so far.  Let's keep this going!

Here is my Facebook post to Ellen which has almost 60 shares and 150 likes so far. Let’s keep this going!

 

As we talked about earlier, what makes the heart sing is making a difference in someone’s life.  Ellen DeGeneres’ sincere acts of kindness have made a difference in my life, as well as millions of lives across the globe. I’d like to have a chance to be on the Ellen show and share my story to raise awareness about organ/tissue donation, so that one day I can help save the lives of others, just like mine was saved by a heroic organ donor.  The greatest gift you can give, is the gift of life.  Give someone life, and register to be a future organ donor today.

Thanks Ellen for being an inspiration to me and millions of others, and I hope to meet you soon!

“Sometimes you can’t see yourself clearly, until you see yourself through the eyes of others.”  ~Ellen DeGeneres

Lessons Learned in the ICU

As you may already know, I belong to the internationally recognized club, Toastmasters. From speech #4, “How to Say It’, here is my fifth speech, “Lessons Learned in the ICU” given on February 5, 2013.  For more info on our club, please go tohttp://www.westconntoastmasters.org.

“The greatest wealth is health.”  ~Virgil, Ancient Roman Poet

Good evening Mr. Toastmaster, fellow Toastmasters and honored guests.

As many of you already know, in May of 2012 I was fatally ill; I spent a total of 71 days in the hospital or ICU.  I survived a life-saving liver transplant, and two life-saving brain surgeries to remove a fatal fungal infection in my brain, called invasive aspergillosis.  While spending as much time in the ICU as I did is not something that I wish upon anybody, I did learn three very valuable life lessons from my experiences in the ICU that I’d like to share with you tonight.

The first lesson I learned in the ICU, is that you might not always be able to change your circumstances, but you can always change your attitude, and a positive attitude almost always preserves over a negative attitude.  When you are as sick as I was in the ICU, you can’t always take care of yourself, and when you can’t take care of yourself, that means someone else has to.  Initially, it made me feel uncomfortable to have all of the nurses and doctors poking and prodding at every nook and cranny of my body.  One time in the ICU, I was with my aunt Caryn, and cupping one side over my mouth with my hand I leaned over and whispered to her, “Aunt Caryn, I’m embarrassed they have to wipe my butt.”  Aunt Caryn started laughing.  I was shocked! “Are you seriously laughing? I just told you that I’m embarrassed about them wiping my butt, and you’re laughing?!”  While chuckling she responded, “If it makes you feel any better, you will be wiping mine in 20 years!”  At this time we both started laughing uncontrollably!  While I was humiliated at first by my lack of privacy, it was something that had to be done for my greater well-being. By being surrounded by my hilarious family, I was able to laugh and make light of the very heavy situation going on, which made things appear to not be as severe as they actually were.  Instead of dwelling on all of  the negative that surrounded me, I was able to focus on positive energy, and I think that played a huge part in my survival.

The second lesson I learned while being sick in the ICU, is that life really is about the “little things.”  I learned that we should learn to appreciate the “little things” while we are fortunate to have them, because you just never know when they will no longer be available to you.  When I was in the ICU, there were many things I couldn’t do on my own.  I couldn’t walk on my own, shower on my own; at times I couldn’t even breathe on my own. I was also restricted on what I could and couldn’t eat, and sometimes I couldn’t eat or drink at all.  When I was discharged from the hospital, I was instructed no restaurants, no movie theaters, and no shopping malls for six months.  This meant no Cheesecake Factory, no Loews to catch a movie, and no Target for six months. I am on a life-time restriction of no gluten, no alcohol, no sushi, no salad bars, and, as of now, no driving.  I guess that means no more driving to Ruby Tuesday and hitting up the salad bar before the 6:00 showing of “Lone Survivor” and then driving my friends to go grab an ice cold beer and some sushi after the movie.  I was restricted from common, day-to-day things that we don’t even think twice about; we just do them.  My entire lifestyle has had to change, and I didn’t realize how important some of the “little things” were to me until now, that I can no longer enjoy them.  I wish I had appreciated these “little things” that I was so privileged to experience and enjoy before my illnesses.

The third and final lesson I have learned from my time in the ICU, is that your family is the most important thing you have in your life.  Being sick is a burden.  There’s no way to say it besides it “sucks”.  It sucks for you and it sucks for anyone around you, because as I mentioned before, when you can no longer take care of yourself, that means someone else has to.  While I was sick in the ICU, I learned that some people just couldn’t be bothered.  Those same people who couldn’t be bothered, are sometimes the people you needed the most.  My sickness brought out the best in some people, and it also brought out the absolute worst in others.  I’m only going to talk about the best though.  One of the best things that could have happened to me is when my aunt Caryn and cousin Rocco got on a plane, flew down to SC, picked me up and drove me up here to Connecticut.  One week later I was admitted to Yale receiving the best medical attention I could receive. Without a doubt in my mind, I wouldn’t be alive today if it wasn’t for my aunt Caryn and cousin Rocco coming to get me and bring me closer to some of the most reputable medical facilities in the country.  I learned family is something you should never take for granted.  When all else fails, for me it was my health, my vision, my strength, and my hope, I always had my family.  Because of my family’s love and support, I was able to get my strength, my health, and my hope back and I am making a fantastic recovery, despite the horrific odds against me!

After being ill, I have learned that no matter what circumstances you are given in life, a positive attitude almost always perseveres over a negative attitude.  I have learned that life really is about all of the “little things,” and that your family are the most important people in your life, and with their love and support you can rise above any challenges or adversity that you are faced.  I will leave you with this:

“Some lessons can’t be taught; they simply have to be learned.” ~Jodi Picoult

The Resolution

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.

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. monov2013

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).

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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 and my sophomore year I won the 2004 Lady Paladin Invitational  with rounds of 69-70-74= 223 (-3) as an individual and also as a team.

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.

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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.”

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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 from October 12, 2013 ING Hartford Marathon (5K)

Photo of me from the ING Hartford Marathon (5K) running for team “Donate Life Connecticut” on October 12, 2013.

 

18 Months Down, So Many More To Go…..

“Don’t give up before the miracle happens.” ~Fannie Flag 
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It is hard to believe that eighteen months ago I was bed-ridden in the ICU on life-support.  Tubes in-and-out of my throat, surgery after surgery, no one knowing whether each day if it would be my last.  Living in uncertainty unwilling to even produce a thought for yourself while your body instinctively telling you that your only job for the day is “to survive,” leaves a lasting impression in your head.  What I endured and have overcome in all 71 total days in the hospital last year was not only a game-changer, it has forever impacted my life.  For the better.

Since my transplant, multiple brain surgeries, extensive physical, occupational, speech, psycho, and now visual therapy–I have since made great strides from the depths of ground zero, essentially.  In all honesty, I feel the healthiest I have ever been in my entire life.  My strength and endurance are coming around quite nicely as well.  I have been working on myself, and making the best “me” that I could possibly be.  I have a feeling, almost a knowingness, that I am on the right track and great things are just around the corner for me.

As I mentioned before, recovering from three very major surgeries in a five-week time span, takes quite an enormous toll; not on just my body, but my emotions as well.  I can proudly say I have been seeing a psychotherapist for the past four months.  My therapist, Susan, has helped me with dealing with the emotional aspect of having a transplant as well as dealing with some of the permanent life changes I have had to make. I have come a long way in the past four months.  I used to cry for hours upon hours, locked away in my room.  I had no idea why I was crying or how to stop.  I was told it was okay to cry.  It was okay to let it out.  I had so much emotional grief built up from what happened to me, that it all just eventually started coming out in the form of uncontrollable tears down my face.  Still, to this moment, tears well up in my eyes just writing and reflecting on my experience.

The tears are not always exactly sadness though.  They are all sorts of emotions wrapped into one colossal meltdown.  Happiness. Frustration.  Triumph.  Anger.  Anticipation. Discouragement.  Wonder. Hope. Appreciation.  Dissatisfaction.  Confusion. Gratitude.  While I am still working to overcome all of these emotions, I am in a much better place than I was several months ago.

Since my transplant, I have often felt guilty.  Guilty because I now have life, while my donor doesn’t.  My donor is another human being, someone’s daughter, son, brother, sister, cousin, and they are dead.  The only reason I am alive is because they are not. I know they are not dead because of me, I am alive because of them. It has been very tough on me, and I imagine this feeling of guilt is going to stay with me forever.  I will never be able to repay my donor for their ultimate act of gratitude, but what I can do is give back in the form of being involved in organizations that raise awareness about organ donation, liver disease, and/or other topics that I desire to be a part of.

Since my transplant I have involved myself in several groups, as well as volunteer for several organizations.  Donate Life Connecticut and the American Liver Foundation are just two of them, but one of the first groups I became involved with was COPE (Community Outreach for Purpose and Empowerment).  COPE, formed by my aunt, aims to empower girls and young women.  Members of COPE learn and improve their goal-setting techniques, engage in active plan to achieve their goals, and learn to overcome obstacles and interference that may be holding them back.  Overall, the members of COPE learn how to live their life with a purpose.  I created the website for COPE and update it regularly. I have really enjoyed doing this, because it allows me to get my creative juices flowing and keeps my mind sharp.

Another way I keep sharp, is through attending and participating in Toastmasters.  Toastmasters is a well-recognized, international organization, that is focused on enhancing people’s public speaking, communication, and leadership skills.  My aunt Caryn had a feeling I would be speaking publicly about my story one day and

In May (2013) I won the Kalley Award for "Best Speech" for my Icebreaker speech at Toastmasters

In May (2013) I won the Kalley Award for “Best Speech” for my Icebreaker speech at Toastmasters

encouraged me to join.  If you aren’t a member yet, I strongly encourage you to find one in your area and get involved.  I went from being completely incapable of speaking in front of a small crowd, to confidently giving a speech in front of hundreds in a short few months.  I began attending the meetings last winter and have since given two prepared speeches.  I won “best speech” for both of my speeches, and even won the club’s “Kalley Award” (most impact on the meeting) after my “Icebreaker” speech!  My aunt was certainly right when she told me Toastmasters was going to be helpful in my future. I never anticipated how quickly though.

This year I was selected as one of the American Liver Foundation‘s LIVEr Life Champions.  As the LIVEr Champion, I served as “the face” for the Liver Life Walk this past September in Stamford, CT.  Leading up the event, I filmed a :30 sec PSA for the ALF, was featured on The Liver Life Walk’s regional brochure.  Not only that, but I had to be one of the faces at the walk, and give a speech about my survival in front of several hundred people.

I continue to utilize my communication skills while serving as a volunteer ambassador for Donate Life Connecticut.  In the past year I have been a part of the Danbury AAA donor program, attended several Donate Life events.  I have also shared my survival story to the medical and ER staff at Danbury hospital, raising awareness about organ/tissue donation (through the New England Organ Bank and Donate Life CT).  Just last week I was in Greenville, SC and had the privilege to shared my story with the Furman Women’s golf team.  That was amazing experience, because I could see that I really touched those girl’s lives.  The more speeches I do, the more confident and easier it is to speak in front of people.  Hopefully it only gets better from here on out.

Trying to get my game back!

Trying to get my golf game back!

I have also occupied my time by returning to the game I hate to love the most, golf.  Last January, my grandfather, Emilio, took me to the driving range to see if I could hit; I couldn’t even make one complete swing. I had so much pain in my elbows from being so weak and suffered from severe joint pain, a side-effect of several of my medications.  I continued trying to workout and get stronger.  By April I was hitting at the driving range with elbow braces trying to minimize the pain.  About a month after that I played 18 holes.  Shortly after, I was able to walk 18 holes with a pull-cart.  I spent a lot of my time practicing and even played in a couple of captain’s choice tournaments in the area.  In one of the tournaments, I won $100 for lowest gross score (-11) with my team.  At another tournament I also won $100 for longest drive (from the red tees, don’t get too excited!).  By the end of the summer I was able to shoot in the the low 80s from the white tees.  As of now, I have only broken 80 once since my illnesses; a 73 at Candlewood CC (fairly easy par 71 course).  This summer you better believe I am going to get my scoring average down in the 70s!

Now I am currently in St. Augustine, Florida visiting my mom and stepfather.  Just a few days ago I was in Greenville, SC for a wonderful nine days catching up with my bestest of friends.  I will be spending the next three weeks here in Florida soaking up the sun (while of course wearing my SPF 50), playing lots of golf, attending my 10-year high school reunion (Nease High School, Ponte Vedra Beach, FL), and doing other fun activities with my mom and step dad.  Once this trip is over it is back to the grind per-say of my routine of visual therapy, other various doctor appointments, follow-ups, blood work, and daily exercise.

My transplant doctor at Yale informed me that by my next infectious disease appointment in February, there was a good possibility I would be taken off Voriconazole, my anti-fungal medication, Voriconazole. Fingers crossed, I would love to be off this medication; not only because it would be 12 less pills/day to take, but also because the medication is $4,400 a month (no that is not a typo, it is $4,440/month).  Even though the price is covered by my insurance, my insurance is such a pain my ass.  Each and every month I have to battle with them to get me my medication on-time, simply because my insurance does not want pay for it.  Oh well, it could be worse right?  Eighteen months ago I was on life-support. Battling insurance inconveniences and other minor hassles are insignificant in comparison to battling to be healthy, battling to breath, battling to to be alive.

In the last eighteen months I have learned so much about myself, about life, about death, and about the inbetween.  I will never be able to fully express, in detail, the emotion or meaning of what I have been through.  I would never wish it upon my worst enemy to experience what I experienced last spring, but at the same time, I prefer it happen to me rather than someone else.  As crazy as it sounds, I would do it again if it meant someone else wouldn’t have to go through it because I know I can handle it.  Knowing you knocked “death” on it’s ass after looking it square in the eyes, is one of the most satisfying feelings in the world.  I was meant to survive.  Before you survive you must endure struggle.  That is what gives it meaning.  So many people go along just cruising through life.  When they coast, they forget about what is really important. I was one of those people.

I have a purpose and I am just now finding out what my purpose is.  It begins by being able to share my personal medical journey with you so you can learn from me.  What do I hope you learn?  I hope you learn that giving back is one of the greatest things you can do.  I hope you learn that a positive attitude is the most powerful and infectious attributes that you can have.  Lastly, I hope you learn to believe in yourself, and have faith that everything is going to fall in place one day.

ING Hartford Marathon with my sister!  Desiree ran her first full marathon, and I ran the 5K (well, partially.  I ran partially on the half marathon by accident, oops).

ING Hartford Marathon with my sister! Desiree ran her first full marathon, and I ran the 5K (well, partially. I ran partially on the half marathon by accident, oops).hope you learn to believe in yourself and everything you do.  If you believe it, you can achieve it, no matter what it is you are up against, and that includes your own worst enemy sometimes, yourself!

Eighteen months down, so many more to go….

“I have come to accept the feeling of not knowing where I am going. And I have trained myself to love it. Because it is only when we are suspended in mid-air with no landing in sight, that we force our wings to unravel and alas begin our flight. And as we fly, we still may not know where we are going to. But the miracle is in the unfolding of the wings. You may not know where you’re going, but you know that so long as you spread your wings, the winds will carry you.”  ~C, JoyBell C.