This upcoming May 3rd, 2018 I will be celebrating my sixth transplant anniversary. Six years already, it is so hard to believe! It seems just like yesterday I was laying in my hospital bed at Yale New-Haven Hospital hooked up to various tubes and wires struggling to open eyes but hearing the words of excitement being shouted at me from my mother, “You had a transplant! Mo, you had your liver transplant!”
My entire life I had grown-up playing sports, I was an athlete, I was seemingly very healthy, nothing could have prepared me for what I was about to experience. Now it’s 2012, I am still more or less a kid at age 26, and I was being admitted to Yale New-Haven Hospital on April 29th, 2012 to the transplant center for acute liver failure. I had just recently spend 16 trying days in the hospital at Greenville Memorial in Greenville, SC until I left most of their medical team stumped with my diagnosis and prognosis–Autoimmune Hepatitis? Factor V Leiden? Budd Chiari? What does she have, what is wrong with her. We’re not 100% sure but we know her liver is failure, and she needs a transplant, and she needs it fast.
I was transplanted up north, to Connecticut, the state I hail from, to be closer to my loving extended family and to attend one of the most well-know and sought after transplant hospitals in the country, Yale-New Haven Transplant Center. I’d been at Yale for only several days, and I remembered my extended family by my side, visiting, coloring pictures and hanging them around the hospital room to brighten up the atmosphere. While we all tried to stay positive, my medical team was performing tests, biopsies, more tests, waiting, sleeping, more waiting, more sleeping. And then one day I woke-up…with tubes in my mouth.
“You had a transplant! Mo, you had your liver transplant!” screamed by mom. What? What happened? I had my liver transplant, ALREADY?! This words present in my thoughts, not being able to actually speak them on my own as I was hooked up to a ventilator. I signaled with my hands for pen and paper and the first things I scribbled to my mother were, “You’re a liar. I did not have a transplant.” I was in complete disbelief.
Then I remembered. I remembered getting to go up to use the bathroom. I had been calling for a nurse but no one was near. Even though I was instructed to stay in bed, I’m as stubborn as they come, I truly felt like I could make it to the bathroom on my own. I mean common, on any given day making a 10 foot trek to the rest room wouldn’t seem like such a feat. I didn’t take into consideration that my liver was is in failure and I was nearly 75 lbs overweight from edema, my body full of unwelcomed fluid expanding by the second. On top of this, I was unaware that my liver had accidentally been “nicked” during my liver biopsy causing internal bleeding. At that moment the last thing I recall was my vision tilting to the left and having no control of my body to support myself as I felt myself falling and as I hit the ground I heard “CODE BLUE! CODE BLUE!” being shouted as my eyes closed. Not another sound could be heard until days later when I awoke and heard, “You had a transplant! Mo you had a liver transplant!”
That was May 3rd, 2012. Not even three weeks after my life-saving liver transplant, I had brain surgery. My first brain surgery. A week later I had my second brain surgery, the third life-saving procedure done in a matter of five short weeks. The infection happened within days of my transplant. Aspergillosis, which is essentially an airborne fungus, found its way into my weak transplanted body through my respiratory system, moved its way into my blood stream, and from there, the infection made a home in the left occipital lobe of my brain. The form of this infection, Invasive Aspergillus, is an extremely rare and life-threatening fungal infection with a devastating mortality rate, reaching nearly a 100%, for transplant and immunosuppressed patients. With those kind of odds, and my body and immune system not nearly ready to take on such a challenge so soon after my transplant, there seemed like there was not much hope for my survival.
Despite the extreme odds against my survival, no one in my inner circle acted like the end of the road was so near for me. My family pumped me up with encouragement, love, and support, my doctors and surgeons, Dr. Rodriguez, Dr. Schilsky, Dr. Matouk and their respected medical teams at Yale, were willing to do whatever it took within in their power to remove that infection safely from my brain. And then there were my friends, the most amazing friends in the world, who visited in person or who were situated hundreds of miles away, let me know through texts, phone calls, cards, gift baskets, virtual hugs and prayers that they were with me 100% of the way. People I had never met were reaching out to me sending their prayers. With this kind of backing from every corner, there is no way I wasn’t going down without a fight, WE weren’t going down without a fight.
As I lay unconscious, hooked up to all sorts of tubes and wires to keep oxygen pumping into my lungs and my heart beating, I somehow remember hearing my Aunt Caryn’s voice. She was by my bedside, holding my hand, telling me that it’s not over, and that I was going to have to fight harder than I’ve ever fought before but that she was going to be right by my side the entire way. At that moment, as I lay still, my eyes closed, my aunt felt a faint hand squeeze acknowledging that her words were heard and I was on-board for the fight.
As you read this blog post, you know I survived. I will spare you the details of the recovery process and the amount of time and pain-staking effort, and therapy (physical, occupational, speech, psycho, vision, & driving therapy) to get back on my feet, literally and metaphorically.
After seeing Dr. Shulman at EyeCare Associates in Norwalk, a year of Vision Therapy with April Banores, and Driver Rehabilitation with Howie at Kneplar Driving School, I was cleared to drive again. My drive didn’t stop there though. I got it into my head that I wanted to pursue my life-long dream of being a professional golfer. I heard a lot of, “One thing at a time Mo,” “You’re doing great, don’t try to do too much too soon,” things of that nature. But if I had learned one thing from my survival and this new lease on life, it was that the time is NOW. Inside me, in my body, was a liver that didn’t belong to me and it was my duty from here on out to make my life something worth living and to make them proud. So right then and there I started gathering information on how to become a golf professional. Fast-forward a few years down the road and here I am now, an LPGA Class A Golf Professional, US Kids Golf Certified, working on my Level II PGA Certification. I left my job at Tamarack Country Club in Greenwich, to follow my heart and the warmer temperatures back down to the south to Raleigh, NC to continue my career at TPC Wakefield Plantation, part of the McConnell Golf network where I am currently employed as an Assistant Golf Professional.
It is so easy to get caught up in the day-to-day life of work and emails and forget about the bigger picture, and I am the first one to fall into that trap. Writing this blog post has reminded me that life is about gratitude, and being grateful for each and every day–grateful for your health, your family, your friends, and all of the wonderful people you have in your corner. I am grateful to not only have one chance at life, but to be blessed with a second opportunity to live it and to live it right. This opportunity would not have been possible without my family, my medical team, my friends, God, or my anonymous donor, who I owe each and every day to.
Being a registered donor isn’t just a yes or no decision, it is a decision to save people’s lives, and I am forever grateful for my anonymous donor in making the decision to save lives. Without him/her and their decision to be a registered donor, I wouldn’t be a golf pro, I wouldn’t raising awareness about organ/tissue donation, I just wouldn’t be alive. This charity golf tournament I am putting together is for my donor, it is for his/her family, and because of their decision to be an organ donor, my life was saved, and now I can go on to help and raise money and awareness to save many more lives like my own. “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.” ~Mo Gesualdi
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
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…
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!
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! 😃
(The original publication of this article and all 20 photographs can be found in the Sports Section of the Danbury NewsTime’s website on Saturday 5/10/14 www.newstimes.com)
DANBURY — For many, running a 5k road race in early May provides an occasion to get outside and enjoy a chance to accomplish a physical fitness goal.
For 28-year-old Danbury resident Monique Gesualdi, lining up to start the first LifeChoice Blue & Green 5k in North Windsor on May 3 was just another affirmation that she is alive and kicking.
She finished the race that was organized to help raise awareness about the need for more registered organ donors in 27 minutes and 49 seconds.
The woman with a big smile and even bigger sense of humor has come too far since May 3, 2012, to let anything stop her from appreciating all the fun, little things life has to offer. And most importantly, the chance to take the time to enjoy all of them.
She may have been born on July 8, 1985, but she now readily admits that she has two birthdays to celebrate.
Two years to the day before the LifeChoice race, Gesualdi underwent a liver transplant at Yale-New Haven Hospital. She had been diagnosed with stage 4 liver cirrhosis two months earlier, but after her liver was accidentally “nicked” during a biopsy, doctors told her family members that she needed a transplant within 24 hours.
“The odds were so against her,” said Dana Ventrella, her aunt. “I will never forget getting
the calls from the doctor saying they had lost her pulse four times in three hours.”
Unlike so many other people suffering in need of a new organ, Gesualdi was matched with an anonymous donor in time for a life-saving liver transplant.
“It was a miracle,” Gesualdi calmly said in late April while sipping a coffee at a Dunkin’ Donuts in Danbury. “I’m so lucky and know how I’ve been given another chance.”
Gesualdi, however, was far from out of the woods as immediate complications arose from the surgery. A fungal infection in her brain called cerebral Aspergillus fumigatus threatened her life afterward. Family members were told only a handful had survived the infection, which has nearly a 100
percent mortality rate.
Two life-saving craniotomies later, just weeks after her transplant, and Gesualdi was still fighting strong from her hospital bed.
“It seemed every time I woke up, they told me I just had another surgery,” Gesualdi said with a sly smile. “It was getting crazy.”
SHARING HER STORY
The road to recovery was a long battle, but one Gesualdi had to embrace with open arms with strong support from her family and friends.
“She was so very strong over a very rough course,” said Dr. Manuel I. Rodriguez, who performed the liver transplant. “Everything is driven by her and she has so much inner strength. My partners and I want to share her story with her to all of the transplant community.”
The doctors were unable to determine the exact cause of her initial liver problems, but it wasn’t from what is the first thing that comes to mind for most people — alcoholism.
“That’s like the `bat’ signal when people hear my story,” Gesualdi said.
Gesualdi’s desire now is to share her story with the world and also to get back to what she enjoyed doing most for many hours of her young life — playing golf. She earned a full athletic scholarship to play at Division I Furman University in Greenville, S.C, and recently became a part-time volunteer instructor as part of Richter Park’s The First Tee youth golf program.
After bouncing around between different jobs after graduating from Furman, Gesualdi was planning on moving back to Florida to take a job in real estate and get her golf teaching certificate before she became ill.
“I think it’s the most challenging sport,” said Gesualdi, who started playing when she was 10 years old. “I love being outdoors. I have always loved sports, but I got hooked on golf.”
Gesualdi wants to share that passion for golf with the young members of the Richter Park program.
“It’s great working with the kids,” said Gesualdi, who will be at Richter three days a week. “They were hilarious the first day. Basically my job right now it to make sure they don’t hit each other in the head with the clubs.”
Gesualdi’s love affair with golf began as a 10-year-old after she moved from Danbury to Kitty Hawk, N.C., with her mother, Nancy Ashe, her stepfather, Ed Ashe, and sister Desiree. The family bought a house right next to Ducks Woods Country Club.
Gesualdi’s mother, Nancy Ashe, signed up for lessons with former golf pro Tommy Wine at Duck Woods and he noticed something special in Gesualdi.
Gesualdi also was able to taste winning early as she won the first tournament she played held in Pinehurst, N.C.
“By high school, I was hard-core into golf,” Gesualdi said “I went after school part-time to a golf academy. I just wanted to keep playing.”
She ended up getting seven full scholarship offers and was close to choosing Wake Forest until she was swayed by a friend to attend Furman and play under legendary coach Mic Potter.
CAN’T WAIT TO DRIVE
After spending 71 total days in hospitals in Greenville, S.C., and New Haven, playing golf again was a long swing away for Gesualdi. She had to learn to walk again and do all the little things every person takes for granted.
“I had two ladies that were going to help me walk at first,” Gesualdi said. “I looked at them like they were crazy. I had been an athlete all my life. I knew how to walk. But that first step felt like a 100-pound cinder block.”
Gesualdi learned quickly it would be one step at a time to recovery.
“I set a goal on a dry eraseboard every day,” said Gesualdi, who lost 60 pounds in three weeks during one stretch of her recovery. “I would try to do a lap around the ICU, for example, and if I did it, I would mark it off. I had a lot of digestive problems, too, so everything was hard.”
Luckily, Gesualdi’s large family was there to help her recover, including her aunts Caryn Swenson and Ventrella, along with a long line of grandparents, cousins and friends.
“It’s amazing,” Gesualdi said. “They told my family I probably wouldn’t be able to drive or speak or walk. So everything they told me I can’t do, I’m doing and doing it well. It kind of shows that what the doctors tell you, take it with a grain of salt. You can really do anything you set your mind to.”
After battling problems with her peripheral vision, Gesualdi is now taking driving lessons and is close to getting her license. It’s taking many hours of therapy with Dr. Schulman in Norwalk, but getting her driver’s license is a big goal for Gesualdi.
“I can’t wait,” Gesualdi said. “I want to be able to drive myself and have that freedom again. My family says I’m stubborn, but that’s OK.”
SHARING HER PURPOSE
Gesualdi is most stubborn now about getting the word out as far and as loud as possible regarding the importance of organ donation. She is a volunteer ambassador for Donate Life Connecticut, a member of Toastmasters International and COPE (Community Outreach for Purpose and Empowerment).
The lady who since her surgeries has run seven 5k races since and has broken 80 on the golf course several times wants nothing more than to get her message out to everybody about organ donation. She has her own website (www.justsaymo.org) which chronicles her story and all the benefits of organ donation.
“I just want to get people to know how important it is to be a donor,” Gesualdi said. “You can even do it online. If you go to donatelife.net, you can do it all right there. You can save so many lives. “
More than 120,000 men, women and children are awaiting organ transplants to save their lives, according to Donate Life America. Gesualdi, meanwhile, hopes to become a golf instructor and continue her work as a motivational speaker.
Her next athletic challenge will come July 11-15 in Houston, Texas, when she competes in the Transplant Games of America. She will be representing the Transplant Team of Connecticut in golf, a 5K road race and two other sporting events. The team is still raising money to attend the Games, and donations can be made by visiting the team’s website at www.transplantteamofconnecticut.org.
Every step forward is a win for Gesualdi now and she is thrilled to share what she describes as her “purpose” in life.
“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,” Gesualdi wrote in a recent blog post.
In only two years, Gesualdi has proven that nothing can stop her from enjoying life — a fact anybody will be able to see when she is driving by on the road.
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.
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!
“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.
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
First, I wanted to give a little recap of what I’ve been up to. I have been “on vacation” from Connecticut, the cold, and my “Big Fat Italian family” (whom I love very dearly) this past month. At the beginning of November I made my way back down to the south to Greenville, SC where I lived the nine years prior to my medical miracle. I was thrilled to spend a glorious nine days with some of my best college friends and also my “local” Greenvillians who reside in the area.
My trip to Greenville was a convenient and much needed planned pit stop from Connecticut on my way down to Florida. It wasn’t just any week/weekend though, it was also Furman Homecoming weekend. Not only did I get to visit with my Greenville friends, but I also had the additional pleasure of getting to see people who came for Homecoming weekend. It was so great to be back in Greenville. I enjoyed my stay greatly, but what I enjoyed the most is what I missed the most, and that is co-mingling with friends and having a good time with people my age. It was exactly what I needed and somewhat rejuvenated my soul, which had be longing for such companionship for months. Now that I have visited my friends, seen my mom and stepdad, and enjoyed some Florida golf, I feel like my optimism, my passion, and my desire to climb the highest mountain tops has been restored and I can now return to Connecticut, to my family whom I miss, and continue on my path of recovery with a refreshed, healthy, and determined mind.
Part 2 of 2 “The Sixth-Sense Penny
I spent a total of 20 days in Florida with my mother and stepfather, and during the day my mother and I spent some quality time together, busy almost each and every day doing one activity or another. One of our “activities” I am going to discuss in great detail because I found it very intriguing. This topic may not interest you at all, and that is perfectly fine, but I thought I would share my experience for those who become appealed by the “sixth sense.”
My mom (whom I sometimes refer to as “the mothership”) and I travelled from her home in Vilano Beach, FL about an hour and half down I-4 to this little tiny community in Cassadaga, FL known as the Cassadaga Spiritualist Camp. Let me preface this by saying that I am not particularly religious. I am baptized Catholic, but I do not have my Communion or Confirmation. Rather, I just do my own thing. I have my own little prayers going in my own little space and that is what currently makes me happy. For some reason though, since I was a very young person, the notion of spirits and the paranormal has always sparked an interest in me.
The mothership claims when I was two or three years old, I had her yearbook and I pointed to someone in the yearbook and told her that they were in heaven and then I pointed to someone else and said that they were going to heaven soon. Very strange for a kid to say, you might think. According to my mother, I accurately pointed to someone who had passed and unfortunately the second individual I pointed to ended up passing soon after. Being at such a young age I do not remember this, and gladly so. It kind of gives me the heevy jeevies. While I do not remember that particular incidence, I do remember on more than one occasion when I was young I thought I may (or may not) have seen something that resembled a spirit. Whenever I thought I saw something, I instantly closed my eyes and tried to block out whatever I saw out of my head and try to convince myself that it was nothing. Either way I have no conclusive evidence, just frail images in my head, the hair standing up on the back of my neck, and a gut feeling to support the notion that spirits do exist beyond life.
Back to Florida. My mom and I arrived at the Cassadaga Spiritual Camp and our first stop was at the bookstore/gift shop. We walked in and were greeted very kindly by a lady. My mom quickly decided that we needed to get our auras taken. My mom paid and we headed into the next room to have our photos taken via what appeared to be some very old fashioned polarized camera. My mom had her aura read first and then was debriefed about her aura by one of the certified aura interpreters. Next it was my turn and within a minute I was ready to have my aura read.
“Oh wow, you have such a beautiful aura!” the lady exclaimed. She goes on to briefly tell me that the green on the left means I am a teacher, or that I need to be a teacher. Then she says, “You may be an “Indigo Child.” I just nodded my head not knowing what that meant at all.
My mom finished up with her aura reading and I was then ready to get my full aura read. The aura reader, a 70-something year old woman took hold of my recent Polaroid photo and began examining my aura. My mother’s aura was mostly red with some yellow. My aura was much different though, my aura had many colors. It had a small amount of green on the left of the photo, but centrally, it was whitish/blueish/violet progressing into blue with very subtle violet present. Then in the far right corner of the photograph is violet. One of the first things the aura interpreter said to me was, “You are much more calm than your mother aren’t you.” I was thinking she nailed that right on the head but you can observe that easily without an aura reading! “You do have a beautiful aura, and it is a huge aura.” She explained to me that a large aura meant people nearby will feed off of my aura and positive energy, but she warned me to be careful because negative auras that may fall within my radius may drain me and bring me down, so I should be cautious and keep my distance from those people.
She also said I had a third eye, but the last time I checked I had either two or four, depending on if I’m wearing my glasses, but not three (lol, jk, I know what having a third eye is). She went on to say that my aura suggests that people come to me for help, which I can definitely contest to be the truth. She stressed that I am very open to spirituality and have psychic abilities. If that is the case, I should look into tuning into my “psychic” abilities so I can win the lotto and hire myself a personal driver to drive me around instead of my grandma (just a thought 😉
The other lady, who at the beginning of the aura reading said that I needed to be a teacher, told me I was going to do great things and asked to give me a hug, and then it was off to the next spiritual adventure. (I went on to read more in depth about auras and my aura and what my aura lady told me and it really interesting to read up about and relate to. When you’re bored at work piddling around on the computer you should take a few minutes and see if you can find out what your aura is.)
Next my mom and I ventured down the road the camp road to get a reading from a medium. At the camp welcome center there is a board with medium’s names and numbers that you can call and a phone right underneath it. How were we supposed to choose from the 20-something names of certified mediums on the board that day?! To my left I noticed a sign that said something along the lines of, We will not help you pick a medium, you have to let your instincts choose and whatever happens is meant to be, yada, yada. I believe the first name we chose was, “Anita Evans,” and my mom made the phone call. No answer. We tried another name, “Nora Ester.” Again, no answer. We were getting mildly discouraged and finally we tried our third attempt, and Mrs. “Judy Cooper” answered. Yay, Judy Cooper it is.
It was after our aura readings that we made our way to Judy Cooper’s location, just a block down the road from the Cassadaga Spiritual Welcome Center. Judy had a very welcoming front porch which my mom sat in a chair and I chose to sit in the rocking chair waiting for Judy to answer the door. My mom negotiated for Judy to do 30 minutes with her and then 30 minutes with me splitting the $70/hour rate into two individual readings. My mom went in and I just rocked away on the porch looking up anything I could find about my recent aura reading on my iPhone.
The thirty minutes went by exceptionally quick. My mom and Judy stepped out onto the front porch, and it was now my turn. I had the intention of being open-minded, but I also wanted to remain skeptical of her potential vagueness and any somewhat obvious speculations she might make about me. I didn’t really have any intentions on what I wanted to hear her to tell me though, for instance “Is Aunt Suzy okay?” or “Am I going to win the lotto?” (I don’t have an Aunt Suzy). The mediums are not fortune tellers, they are simply a medium between us and spiritual world. This sort of thing, mediums, spirituality, etc. isn’t math, where 2 +2 always equals 4. There is no right or wrong. It is what you chose to believe or not believe, and at this point in time I didn’t want to walk in as a skeptic nor did I want to give her any hints or clues about myself which might influence her to say certain things, I was just going with the flow anxious and curious to see what Judy was going to tell me.
I followed her into her office and sat in a chair across from a desk. She asked to join hands and said a brief prayer to the spirits asking only good spirits to come forth. She let go of my hands, closed her eyes, and starting talking very, very quickly. She told me beforehand I could write down anything she said, so I grabbed the pen and the pad that she gave me and started writing frivolously.
I ended up taking about eight pages of notes down (small notepad paper). I had already been intrigued by the aura reading, but Judy really had me. Judy started off by saying that December I am going to be dealing with a lot adjustments. She says that she knows I’m a kind person but I don’t take too much from anyone and that I do what I say, don’t just talk the talk, I walk the walk. Judy told me that I’ve been wanting to move quicker than I have been able to and that my movement has been restricted. She must be referring to the fact that I can’t drive and I get cabin fever very quickly. She then said January presents a lot of new things clearing for me. Sounds good to me, Judy, keep on.
“Wait, a few spirits are stepping forth,” Judy proclaims. “A lady is stepping in over your left shoulder and she is telling me that you are very multi-dimensional and always doing something, but you need to slow down.” Judy continues to say, “You have a very important decision to make. “This person, I’m getting a motherly vibration from with family resemblance, you may or may not know who they are.” I start thinking and I don’t have many immediate female family members who have passed. Maybe one of my great grandma’s our my aunt’s cousins? I’m not completely sure.
Judy goes on, “Quickly stepping in over your right shoulder is a friend or acquaintance who was murdered or passed very quickly or unexpectedly. They are a younger person, near your age, and they want me to tell you they are sending you pennies. Pick up these pennies when you see them and save them this is their way of paying attention to you to let you know they are there.” “Woah”, I pause for second. Okay keep writing, keep writing, keep up with Judy. Judy tells me they “stepped out”.
Next Judy tells me that sometimes my balance is off and that I will have an opportunity to remove things that are blocking me. I’m thinking to ask Judy am I going to be able to drive, is that what you mean? There is no chance to interrupt Judy as she continues speed talking. “January is going to be about duty and responsibility before pleasure, and life and improvement.” “Your movement and travel has been restricted, but this is a test of faith.” My movement, if you mean my ability to drive has been restricted, and sometimes it does drive me crazy (no pun intended), but I keep myself very busy and mind occupied as to not go stir-crazy, but Judy is telling me slow down, so then what I do?
“You have the answer to all of your questions.” Judy tells me that I get clear feelings and these quick vibes that I get from people are ones I need to start trusting. She insists that I need to start listening to my intuition about everything because it is most likely right. Thanks Judy, I’ve always felt that but I second myself and my choices often and afterward my gut also tells me when I’ve done something wrong. She tells me this because I am going to be presented with challenges dealing with other people. Judy tells me I can’t change other people or a bad situation but if I continue to think this “disappointment will be your friend.” Point taken Judy, point taken. I’ve known that for a little while and have had my fair share of disappointments with people, but Judy has inspired me to really start listening to my gut feelings, which is probably something we all should learn to do anyway.
“You are on Earth to learn lessons and you are always learning. You’ve experienced quite a few things.” I definitely have learned quite a bit about life, people, and myself while I was overcoming my illnesses which I would not have learned if I was just cruising through life like I previously was. Judy tells me, “Start writing. Write down things when you’re making decision, good and bad, this will help you decide. Write down your dreams. Your dreams are to connect with you. Write them down and they will make sense later. It will pop out at you, experiences will come into you.”
Judy changes subjects and says that, “You are always on the move but your spirits are sweeping around you. Slow down.” “You have a lot of decisions to make. Take time and don’t make snap decisions,” Judy urges me. “You may be packing, the spirits are moving you. You are on the right path. The coming months are very important. Experience the journey but don’t wander haphazardly like you’ve done in the past.” Did Judy just call me out? I think so, lol. “You have the power of choice and attitude. ” She goes on, “Learn the lesson of “no” in some situations presented to you. Damn you Judy, I am guilty of being a pushover sometimes. “You’re going to want to go the extra distance, but you need to slow down, have great preparation, and a positive attitude.” I started thinking to myself to Judy, “Are you a certified medium or my therapist because you both are starting to sound a lot alike,” haha.
My favorite thing Judy says to me is next. “Once you set your mind to something it’s like the jaws of a shark.” Could she be referring to my plan with my aunt Caryn to be on the Shark Tank? That would be pretty awesome. Judy goes on, “Spirit is opening a divine plan for you. The next six months are going to be a roller coaster ride. Listen to yourself. There are going to be a great deal of changes physically, emotionally, and financially, all for the better.” Thanks Judy, that’s what I like to hear! “Reach out, participate, ask for help with these new opportunities. You will move forward in every level of your life.” Boomshki! I love hearing that! “Don’t hold on, use your free will.”
Judy then tells me that I’m not good around chaotic people and that I don’t argue but I will if I have to, if “my feathers have been ruffled.” People who ruffle my feathers, I need to step back from. She says that people who are very opinionated I need to step back from, and also emphasizes that because their negative words or opinions will feed into me. She also said something along the lines that my aura reader told me which was to be cautious of negative energy as it was cause me to be off-balance. “Words attract people, be choosy with your words, it’s your turn!” Judy says leaving me puzzled with that one. “Dig beneath the surface of people and their appearances. You will be meeting people but don’t take people in too quickly, use your intuitiveness. Judy repeats that I have a big decision to make, write in my journal about my dreams, the good and the bad and that I am not trusting my own “knowingness” and I need to.
“Affirm,” Judy says. “You see it happening, it’s going to happen.” “The spirits hear what you’re saying. You’ve been disappointed in people before. Go with your inner self, you have that ability.” She skips over to say, “You have a big gift in front of you, hold onto it.” My transplanted liver I’m assuming? “You will be moving, slow down, take time to make decision. It will be a contract. Signed. Make sure that it is worded the way you want because it will be permanent. You will be able to change your decision but it will be costly. It will be a contract for work, school. This will be in September. Don’t sign anything right away.” I think I know what Judy is referring to and that excites me greatly. Also its weird how she mentioned September specifically because this past September when I was meeting with my therapist, we often discuss my desires to find ways that I can resume my “normal” life, as least as much as possible. At that session we decided that in one-year, by September 30, 2014, I would be moving in pursuit of a career where I can continue my recovery, stay healthy, get stronger, and try to pursue a “normal” life again. Now I just hope Judy is right! I don’t want to give it away but come next year if Judy is right I will be sure to let you know! For Judy, whom I met 15 minutes ago to say that to me, is quite the coincidence but just makes me wonder, what if she really does talk to these spirits?
“The spirit over your left shoulder, the motherly one, wants to give a pink rose, and also a blue coat. This coat is for your protection.” What does the pink rose mean? My grandmother’s name is Rose, does it have anything to do with her side of the family? So I have a pink rose and a blue coat and now Judy is telling me the other spirit, the one over my right shoulder says they died before they were supposed to that they were too young.
I’m thinking this has to be my organ donor. My organ donation was kept “anonymous” but some of my family was told that my liver is from a donation that happened as a result of a car accident that some young people died in and that my donor saved 8 lives and enhanced the lives of up to 18 people that day (including tissue donation). This is just one thing I have been told. Someone also told me my donor is a 40-something year old Ecuadorian man. I was able to find this man in the newspaper archives and he passed on May 1, 2012, but my transplant was late at night on May 3, which means my donor passed sometime on May 2nd, not May 1st, so that man couldn’t be my donor.
I have spent many nights grieving over the fact that here I am alive, but only as a result of another person’s passing. It is one thing if they lived a plentiful life, but to hear that it may be someone young, someone who had not lived long enough to experience the many things they probably wished to experience, breaks my heart a little. A lot, actually. There is no way humanly possibly for me to ever repay them for my life-saving gift which simultaneously is the abrupt ending to their future. It is a tragic yet miraculous thing at the very same time which has been a struggle for me to deal with everyday.
The following day after my mom and I visited the Cassadaga spiritual camp, I resumed the rest of my vacation as normal. It is necessary for me to get my exercise in or I get quite irritable, so I frequently walked 3.5 miles from my parent’s house over the Vilano Bridge and back. I was walking over the bridge as I normally do thinking about many things, normal as well. This day my mind was preoccupied with what Judy had said to me the day before.
Since my liver transplant I have been very curious about my donor and wrote a letter last fall which I submitted to the New England Organ Bank which goes through a very rigid process. You don’t know really anything about the donor or their family due to privacy laws, but just knowing they had an accident and were young is not enough for me. I have a very personal connection with this individual, I mean not only did they save my life but a part them lives inside me. They are one of the only reasons that I am alive today, I can not help that I want to know who they were.
I do completely understand donor’s families in this situation to choose to keep their privacy, especially if they have not had adequate time to grieve and more forward. I do. I can only imagine what it feels like on that end. I hope one day they do come around and choose to read my letter to them. I put my heart and soul into that letter and I want them to know how truly sorry I am for their loss and that even though I have no way to make up for their loss, I will do everything in my power to make sure I use my second chance for greatness.
Here I am walking up the bridge, these thoughts filling my head, tears streaming down face, hopefully masked behind my sunglasses so walkers passing by do not see the emotional wreck traveling up the bridge one foot in front of the other. As I approach the very top of the bridge, my head looking down at my steps, I see a penny. Could it be? No, there’s no way, it’s just a penny, pennies are everywhere. But what if? What if Judy was right and my donor is acknowledging me? I picked up the penny and not even moments later a lady and her teenage son stop. My mind is still going crazy over the penny as the lady tells me her son survived cancer and this is his first time walking over the bridge and if I wouldn’t mind taking a picture of them. Of course I don’t mind! She hands me her phone and I snapped a few photos, she thanked me, I congratulated them and they went on their way.
I stood for another moment and decided I needed to snap a photo of my penny on the bridge where I found it, so I did. This could be a complete coincidence but Judy seemed to be right about so many things I couldn’t possibly ignore it. And then, the picture with the cancer survivor at the same time just seemed a little too bizarre that it had to be more than coincidence, it must be a sign from my donor, especially since I was thinking about him/her at that very moment.
You probably think I am crazy, and I probably am, but it is this “craziness” that creates a drive within me, a belief system, that there is more to life than just you, your body and your mind. There has to be a purpose for it all somehow, somewhere. How many times a day do you ask yourself why, why this, why that? Or maybe you don’t. I do all of the time, just wondering away about so many things and having virtually no definitive answers.
Whether “the spirits” are right or Judy was just merely giving me a $70 therapy session, it was all good advice that I choose to embrace and head forward with wherever it is this path that I am in is taking me. Alanis Morissette travels with one hand in her pocket; I am going to travel with a penny in mine 🙂
“Walk with the dreamers, the believers, the courageous, the cheerful, the planners, the doers, the successful people with their heads in the clouds and their feet on the ground. Let their spirit ignite a fire within you to leave this world better than when you found it…”
― Wilferd Peterson
I have been asked to be the 2013 Liver Life Champion (Fairfield County) this year! The Liver Life Walk will be held on September 29th, in Stamford, CT and I will be speaking at it this year!
I am so honored to have this opportunity to represent the American Liver Foundation and to publicly speak about my journey. Thank you for all who have followed me and supported me, I wouldn’t have the courage to be doing this without your continued support!
If you are in the area I would love for you to attend the event on September 29th, 2013 at 100 Washington Blvd, Stamford, CT 06902. I have designed Just Say Mo T-shirts for the event and I will be letting you know soon about purchasing those.
Today we met with the Mayor Boughton of Danbury, CT to hang the Donate Life flag at City Hall for Donate Life Awareness month where flags will be flown across the entire state for the month of April! Show your support for Donate Life on April 19th by wearing blue & green proudly on National Blue & Green Day!
April is Donate Life Awareness Month, where the entire month is nationally observed to honor everyday heroes who are/were organ, eye and tissue donors. Before this year, I never knew Donate Life Awareness Month even existed, but obviously after having experienced a transplant first-hand, and a transplanted organ being one of the only reasons I am alive today, it is now a topic that is very near-and-dear to my heart. I was twenty-six year old when I had my transplant. Twenty-six. If you told me the year before on my 25th birthday that in about a year and half I would be dying of acute liver failure and need a liver transplant, that would soon result in a deadly brain infection that would require two extremely dangerous brain surgeries, I would have probably laughed and said there was a greater chance of Nicki Minaj being elected President in the…
Grateful: a) feeling or showing an appreciation of kindness; thankful b) expressing gratitude Satisfy:a) to make happy, to please; b) to gratify to the full; appease
Overall, the last two months have been, for the most part, pretty busy and entertaining for me. After the holidays were over and January rolled around, I went to St. Augustine, FL to visit my mom, step-father, and to surprise my little sister for her 25th birthday for about a week. While I was there, my grandparents came to visit, and then I rode with them back to their winter home in Fort Meyers and stayed an additional week. The following weekend after returning from Florida, I went up to Boston for a short weekend to spend time with a few of my friends from college who live decently close to each other. The weekend after that I went to the Mohegan Sun Arena in Uncasville, CT and saw Bon Jovi put on a 2-hour kick-ass live show…for free! I can definitely agree that January and most of February were rather eventful months for me. The last few weeks, on the other hand, have been more on the dull and uninteresting side. I am not complaining, just stating facts.
I’ve been basically confined to the house with sporadic modes of transportation available to me here-and-there (depending on my family member’s schedules’), and it has begun to start to put me a little-bit “on edge”. I absolutely believe I do a great job of finding ways to entertain myself and keep my mind busy. I am also rather physically active, circumstances considered, which keeps me entertained frequently. Still, it is unfortunately starting to wear away at me a bit; not having my independence that is.
I have noticed I have been getting very frustrated. Frustrated that I can’t drive. Frustrated that when I need to go somewhere that I need to find a ride. Frustrated that I usually can’t be alone when I’m shopping, or alone at all sometimes. Frustrated by all of the brotherly teenage bickering and yelling and farting. My only “escape” is the room I stay in, but it is still not fully excluded from everything considering it is household public-access to the mini-office, work-out, and playroom.
This blog is not about me bitching up a fit. This blog is about me realizing and sharing the true difference between what being grateful and being satisfied is. Yes, I am frustrated that I cannot drive, but I am extremely grateful that I have enough of my vision field to still do many things. Yes, I get frustrated always having to depend on a ride, but I am grateful that I have family that is willing and kind enough to drive me around. Yes, I get very annoyed when the boys are loud and fighting, and when there never seems to be a moment of “fresh, clean air” while either of them are in the room if ya know what I mean, but, still, I am grateful to have them as my “brothers”. Yes, I am frustrated that I used to live independently and now I feel like I am somewhat re-living my early teenage years, but I am grateful that my family has allowed me to be a part of their home, grateful to call them my family, and above all, I am grateful to be alive.
Today in the shower, as my mind was racing, “What is wrong with me? What is your problem Mo? Why are you on such a short-fuse so much lately? C’mon get it together Mo.” I kept thinking and asking myself questions, and thinking some more. I came to the conclusion that I am gratefulfor everything and everyone in my life, butI am not satisfiedwith my life and that there is a difference.
Well, what is the difference between being grateful of your life and being satisfied with it? The difference, for me at least, is I am so very appreciative of my life and that I have been given a second chance to make it satisfactory and fulfilling, but I am currently not fully satisfied with it. Yes I am alive, but I want to be living;not trapped.
Not being able to drive does restrict my freedom and independence more than I would have ever thought, but I have been making-due. The problem is I don’t want to “make-due.” That has never been a mind-set of mine, and I don’t want to be content with “making-due.” Ever.
I dream of being on my own, having a career, living in my own house, driving my own car, etc. Not that I want to be alone all-of-the-time, I just dream to simply have my independence back. I’m 27 and I live with my aunt, uncle, and cousins and the closest thing to my old “Mo-bile” now is riding shot-gun in my grandma’s Toyota Camry…with my grandma. The luxury of “leaving and going as you please” doesn’t seem like a luxury until you have it suddenly snatched away from your feet. I know “independence” is what I want, but how do I get it? I went to the mall the other day and I didn’t see anything on sale for “Independence.” Purchase now and your first 3 months are free!” Haha, I wish.
So, since “independence” isn’t for sale, how am I going I take my dreams and put them into an active game plan? This can be tricky for my particular situation, because some of my goals are somewhat dependent on my medical progress, doctor’s diagnoses, etc. My goals aren’t like, “I want to lose 10 lbs.” or “I want to run a 5K.” While some of my goals are indeed like those, the ones I am talking about now are much different, such as, “I want to be able to see” and “I want to be able to drive”. The only control I really have with goals like these is to just continue keeping-up with all of my doctor’s appointments, medications, staying healthy, and thinking positive. After that, I am not sure if there is anything else I can do, but just patiently wait.
I often wonder what other people would do and how they would react if they were in my shoes. The reason I wonder, is because I am constantly in conflict with myself, and always looking for more, and I wonder is that normal or not? Then I question should I be satisfied with how things are? Is it bad that I am still not yet satisfied with my life? With all said and done, I did get a liver. I survived two serious brain infections. I am healthy. I am alive. I have wonderful friends and family. Is it selfish of me, that I want more for my life than just being grateful and awake each day? I want to be satisfied.
I would be satisfied if I was living every moment to the absolute fullest I could each day. I know that isn’t possible due to time and monetary restraints, but this doesn’t stop me from trying. I will steadily plug away each day at my goals until I get to where I want to be. The problem is, I am never completely satisfied with where I am at, and I always want more. Mo, always wants mo’–I am always trying to out-do myself in whatever it is I do. I am my own worst enemy, and whether that is a good or a bad thing, I have yet to determine.
In one way, I believe it is a great thing, because I’m always trying to work harder, to make things better than they were before. Settling is not in my vocabulary-for anything, or anybody. On the other hand, sometimes I think I’m ready to do things, but my body is not, I push anyway, and I end up setting myself back a tiny-bit further from where I began. It is vicious cycle of balancing, and that is something I have gotten much better at, yet still have plenty of room for improvement.
The truth of it all is I really don’t know what will make me truly satisfied? Will I ever be able to get to a point where I can say, “That’s it? I am here and this is the best life can possibly be.” Who knows? But ya know what? That is okay because it keeps me continuously working hard at my goals. When I’m working hard at my goals, trying until I can’t try any more, that is the one thing that I do find satisfactory in my life. That feeling that I’ve done everything I could possibly do, leaving no room for excuses. It is a hard feeling to get to, especially with me since I am never satisfied ; )
“People who are unable to motivate themselves must be content with mediocrity, no matter how impressive their other talents.” ~Andrew Carnegie, American Industrialist & Philanthropist
“Motivation is what gets you started. Habit is what keeps you going.” ~unknown
“I’ve always made a total effort, even when the odds seemed entirely against me, I never quit trying; I never felt that I didn’t have a chance to win.” ~Arnold Palmer
When I was released from the hospital (this past June 2012), the first step to getting back on my feet, was literally, getting back on my feet. I was having a very difficult time walking without assistance. I had been bed-ridden for so long not to mention my body had just survived several traumatic surgeries. Even though in my mind I felt like I was ready to basically jump on the saddle of life and say “giddy up,” my body wasn’t quite on-board with what Iwanted to be doing. When I wasn’t sleeping, going to one of my many doctor’s appointments, having speech, occupational, physical, visual, or psychotherapy, there was a very good chance you could find me reading and researching.
I looked up everything I could on my diagnoses, treatments and medications. I read about pre and post-transplantation, organ donation, statistics, and truly educated myself on everything I could about basically anything I could. To my surprise, I became somewhat intrigued by some of the things I had read, and it was a productive way to consume my time. I liked it when my doctors were discussing results or numbers in front of me, because I somewhat had an idea of what they were talking about. That gave me a slight feeling of almost, comfort, you could say, considering it was MY body that was headlining discussion.
Obviously, many things in my situation were out of my control when I was in-the-hands of my medical team. I was an active patient in my treatment though; I not only became more educated, but I was better prepared for what I was about to endure. I knew it was going to be rough, but I had to preserve even when it didn’t seem like there was an ounce of energy left in me . Rather than dwelling on all of the distress going on within my body and my surroundings, I somehow managed to put my game face on, and I haven’t seemed to turn it off.
My only hope of surviving the fungal infection in my brain, was to be on a very aggressive dual treatment of both the Amphoteracin B and 600 mg/day of Voriconazole (which I still continue to take, and probably will for another year or so). The Ampho is a very toxic and rather intolerable form of treatment for many patients, similar to chemotherapy. My doctors were extremely careful in monitoring my blood levels to make sure my kidney levels didn’t get too high, and also to make sure it wasn’t causing damage to other parts of my body. This was while simultaneously managing my anti-rejection medication levels for my new, transplanted liver. The more Ampho I was on (to kill the Aspergillus in my brain), the higher my kidney levels went. My medication levels were like a see-saw, up-and-down, balancing anti-fungal therapy for my brain vs my kidney function. The anti-fungal treatment needed to be aggressive if I wanted any chance of surviving, and even then, there was no guarantee.
On-top-of the anti-fungal therapy, I was experiencing many side-effects from all of the medication I was on. Certain medications I was taking were prescribed to off-set the side-effects of another medication, which also would then have a minor side-effect of itself. I was swallowing 46 pills/day at this time; add to that lingering anesthesia from all of the surgeries, and it is safe to say my world was a decent fog.
As I mentioned, I was a rather inquisitive patient (and still am). I was always requesting my nurses to bring me my recent lab reports so that I could analyze them. That curiosity continued throughout my “recovery” period as I would compile lists of questions based on my findings to ask my medical team. During rounds my doctors would come in and rattle-off a bunch of big medical terminology that initially left me dumbfounded. I was motivated to learn what was wrong with me and learn what possibilities lie ahead for me.
I wasn’t always in a state-of-mind to do this by myself. When I was in a state of delirium, someone in my family was always there to get the recap from the docs what was going on. I guess even when I wasn’t “awake”, I still inherently knew that my family was right there beside me, giving their full love and support, and that, I believe, gave me an insurmountable amount of strength and courage.
According to the data and the statistics of my research findings, there is not much data to support me being alive. For myself to be doing as fantastic as I am, to have recovered as quickly as I have, was not anything anybody expected, except myself. I knew I didn’t want to be sick or let being “disabled” get the best of me. My impressive medical team at Yale, combined with my the love and support I was receiving from my incredible friends and family spread-out all over the country, gave me enough confidence and strength to believe in myself to fight for my life, fight through my recovery. I had the feeling that everything was going to turn out all-right, and not just alright, but I have a feeling it is going to turn out better than I even imagined.
A couple of weeks ago, I had an MRI of my brain and a follow-up appointment with my infectious disease doctor, Dr. Topal. Doc called me a “miracle child.” If that isn’t enough, he went on to say there there are only a “handful” of people since the early 2000’s to be diagnosed with invasive aspergillus and survive. He also said that they are not exactly certain as to how long I will be on the anti-fungal medication, Voriconazole, due to how extremely rare and fatal Invasive Aspergillus is. There is lacking data to support virtually more than a handful of survivors; fortunately, my body is tolerating this medication very well, and because of that I will continue taking Voriconazole to prevent any chance of the fungus returning to my brain.
I could be scared, I probably should be scared, because I am essentially a guinea pig relying on a medication to save me from an infection that has almost a 100% mortality rate in immunosuppressed patients post-transplantation. While I have no control of how my body handles this medication, what I do have control of is to follow my doctor’s to a T. I stay very active and eat healthy, and after that, I just cross my fingers and look-up and say pray to the big dude in the sky to keep looking out for me; the rest is out of my hands. Knowing I did and still do everything I can do to get well, this physical and mental combination of satisfaction is essential in me being able to put my best foot forward in battling sickness, but more importantly, it is essential to my overall well-being as a human.
Now, for the odds. Before the Invasive Aspergillus (IA) came about, getting a successful liver transplant was my number one priority. Without a new, transplanted liver, (and without it very quickly I might add), I was sure to die. I tend to aim-high and set goals that one might consider to be “out-of-my-league,” and that doesn’t stop when it comes to my medical attention. I wanted the best medical treatment I could get and I was not going to settle for anything less than the best. This was my body, my life, my future I was talking about.
It’s not all about me though. What really motivated me was that thought if let liver disease kill me, that doesn’t just affect me, but many people would suffer from if I passed. My grandma cries when a Whitney Houston song comes on, what the hell is she going to do if I don’t make it?!? I did want to be strong for me, but really I had to be strong for my family, and for my friends. If I died and was “Angel Mo-ski” looking down from heaven in my stunna shades and saw my family a mess because of me, I know my angel heart would feel a heavy weight of disappointment.
I wasn’t about to just sulk and throw a pity party for myself. No, sir. Instead, I was like how do I attack this? What do I need to do? Where do I need to go? How do I get there? With that being said, I did my research, and Yale has an amazing reputation for many things, including being one of the top transplant facilities that you can go to, and it also happens to be not too far from about 90% of my family.
Any transplant program can claim to be the best. But when it comes to measuring how good a transplantation center is, data speaks louder than words. According to the Scientific Registry of Transplant Recipients, a national database of organ transplantation statistics (through 12/31/10):
After digging for statistics I found just about everything one could possibly find about Yale Transplant on this website here: http://www.srtr.org/csr/current/Centers/201206/pdf/CTYNTX1LI201206NEW.pdf
I communicated back-and-forth with five different medical facilities in the area, but I had my heart set-on Yale. I just had this feeling that everything was going to be okay if I want to Yale, and I wasn’t planning on going anywhere else. Applying to a transplant program I found to be a similar process to the college application process. In terms of the transplant approval process, you have to apply, correspond, and get accepted based on whether your insurance approves you. I had narrowed my five hospitals down to two; Yale and Mt. Sinai. I was scheduled to meet with Mt. Sinai for an evaluation, but luckily, two days before that appointment, I was able to get an evaluation appointment at Yale.
My first appointment at Yale was to see if I was an eligible candidate to be a transplant patient. The doctor who evaluated me was Dr. Schilsky, the head of Transplantation at Yale. Dr. Schilsky looked at my charts from Greenville, looked at me, and his exact words were this looks “worrisome.” He called for me to be admitted right-then and there. The next thing I know they were calling for a wheel-chair to wheel me to the transplant floor. After waiting for a prolonged time for the transport to come, Dr. Schilsky wheeled me to 9West (the transplant floor) himself. There I was with no bags packed, just me, and my wheelchair, being rolled to the transplant floor at Yale, having no idea what was going to happen next.
I knew I was ill, and I knew it wasn’t looking good, but I never fully embraced the notion that I was ill enough to die at any moment. I don’t know if it was the medication, and that I was very lethargic and in-and-out of consciousness constantly, but when I was awake, and when I did know what was going on, I was never really scared. I don’t know why, I don’t know how, but I did not fear death, and honestly, I still don’t. I didn’t allow myself to absorb anything negative; not words, not thoughts, not statistics, nothing. I look back at photos taken in the hospital and I am smiling holding up some version of a peace sign in almost every picture. You can see tubes coming out of my nose and mouth, my arms entirely bruised purple (from being poked by so many needles so many times each day), I’ve got staples in my skull with my head blingin’ like I just left the set of a Ke$ha video, but yet, I’m still smiling. How is that even possible?
Most people in the same situation, I would imagine, would be freaking out. Don’t get me wrong, I am human, and I did freak out inside a little, but in retrospect I think to myself all of the time, how did I not completely lose my cool? I have to say, it must be because my extended family was right there with me the entire way. I would sometimes be in dementia or unconscious for a day or two but sometimes I would wake-up and be coherent not missing a beat. It was so strange.
It’s not like any of that was fun, but it was happening, whether I liked it or not. And while I couldn’t control what was going on, I could control how I handled the situation. I knew that losing my cool would get me nowhere closer to getting better, so I tried my best to keep it together. Don’t get me wrong, had my moments where I was skeptical, but I was able to bounce back from them quickly and move on. The key was not to dwell on what might have been negative at the moment, but rather to distract myself with positive thoughts of my friends, family, and future. Did having a positive guarantee me of surviving? Who can know for sure? Deep down in my heart, I know the love that surrounded me combined with the faith I had in myself, showed a much more promising rate of survival than any stat you could (or could not) find.
I had missed calls, texts and Facebook messages that were so deeply encouraging, and utterly touching to me, I found myself laughing and crying throughout my time in the hospital. I kept all of the messages and look back from time-to-time, just to remind me how lucky I am to have such wonderful people in my life. I was, and I am still in complete shock, with everything. I was like, holy smokes, I must be the luckiest person in the whole world. It seemed like so many people cared about me, or cared about my health at least, and I feel so, so grateful to have that kind of support.
My hospital room in Greenville was unlike any other hospital room I’m sure anyone has ever seen in their life. I had flowers and stuffed animals lining the windowsill and out-looking the parking lot of the hospital. Every single person who came to visit me colored at least one picture out of one of the many coloring books floating around.
I had visitors left and right, friends spending the night, it was like a 24-7 party going on in my hospital room with everybody and everything going on. The nurses loved it, doctors would come in and be like is this a hospital room? The brightness of my room, the vibe my room gave-off, combined with my friends and the laughs–it never gave me the time to let any of the negativity really set-in. If you have no one to share good times and laughs with, then what really is the purpose of life? I was surrounded by love, and without-a-doubt that contributed greatly to me surviving, and I thank each and everyone one of my friends who came to visit me in Greenville in the hospital, you guys are so incredibly amazing, and I love you so much.
When I moved to CT and was admitted to Yale, it didn’t take long before my family got on the same trend and started coloring and hanging pictures in my room to keep the vibe going. I kept getting switched hospitals rooms from the 9th floor (transplant floor) to the 4th floor ICU depending on how sick I was. Even though each room was slightly different in shape and size, it was always filled my family and that is what matters. For 52 days, those hospital rooms were my “home,” and it just seemed like I was never going to get leave.
As soon as I got through one surgery, and everything seemed for a brief second like things might just be okay, somehow, something worse would happen to me. I get through a liver transplant and think I’m done and ready to be home within 10-days, but no then I manage to inquire an extremely rare and lethal fungal infection in my brain that has almost a 100% mortality rate? Okay, I survive the first surgery, but my surgeons were unable to remove all of the infection for fear that it would paralyze me, or leave me completely blind or deaf, and that’s only if I survived. This meant a second, risker brain surgery was in my near future if I wanted to survive. As my family would say, “you can’t even make this shit up.
“Cerebral aspergillosis has a poor prognosis in immunocompromised patients, with the mortality rate approaching 100%.” (“Invasive Aspergillosis of the Brain: Radiologic-Pathologic Correlation.” Radio Graphics. http://radiographics.rsna.org/content/29/2/375.full. June 2008.)
Everything happened so quickly and I was going through so much physically and mentally, that it is only until now, months after being discharged, that I was able to process and understand everything that I went through. It had initially taken a toll on me physically, mentally, and psychologically, but I did what I could to take on each day as a new day.
How I make the best of each day is by being physically active. I feel myself getting stronger on a daily basis, which is motivating in itself. I have always loved listening to music and occasionally drawing and writing silly poems, but since my transplant I have found additional comfort in writing, and discovered that it not only keeps me productive, but people seem to enjoy what I have to share. I also have found writing to be therapeutic, so it serves a multiple purpose. I also really enjoy baking delicious gluten-free recipes, and it excites me to change-around recipes I have found and make them my own. I designed, created, and maintain my aunt’s website for her group, COPE (www.iwillcope.com) and potentially might be able to make some more websites here soon. (Months after writing this blog, I created another website, http://www.justsaymo.org). The point is, even though I can’t do everything I want to do when I want to do it, I have found other more creative ways to utilize my time, and that is fine by me.
“Success is not measured by what you accomplish, but by the opposition you have encountered, and the courage with which you have maintained the struggle against overwhelming odds.” ~Orison Swett Marden
I have always had this thought in my head that I was going to do something great one day, but never knew what. I am constantly asking myself questions all of the time in regards to what I really want to do, but have never found any concrete answers, and it has been chipping away at me each and every day for years. I know what I like, but what do I love? What is my passion? What am I destined to do? Is this something I will be proud of ten years down the road? I’m 27, and I still don’t really have everything figured out; all I do know is that I don’t want to spend my life feeling “stuck” doing something that I find meaningless. I want to be able to look back on my life and be satisfied with who I am and what I have done.
Through self-interrogation, I’ve found that what makes me feel good is when I make other people feel good, especially about themselves, and that I want to make a difference in people’s lives; whether it is one person or potentially millions. I want to take my experiences, my mistakes, my regrets, my victories, everything, and be able to share what I have learned with people who are maybe in the same place I recently was. I want to show them that no matter how down or horrible life may seem at times, it is basically just testing you to “see whatcha got”. When you are confronted with a difficult situation or any obstruction, you have the choice to let it block your path and stop you from where you are going, or you have the choice to find a way around it and keep moving forward. I personally choose to knock my road-block down, right on it’s ass, screw the detour, and now I am traveling (slightly over the speed limit) cruising headed straight for “Achievement Avenue.” If you are headed in my direction I mostly certainly have room for you, but if you are headed south toward “Sink Town,” you might want to consider a boat to keep you afloat to get you to where you are going. Metaphors aside, most importantly, I am on the path in which I am proud of who I am and what I am doing.
So, I got “the feeling” that I can feel it in my gut, when something good or bad is going to happen. I am sometimes not very good at articulating these gut feelings into words that others will always understand. My gut has an innate ability to sense the good and the bad in the near future, and over-time I’ve learned that I need to just go with what my gut is trying to tell me. It is a tingling in my stomach, a subtle feeling of nauseousness, but I am able to differentiate it from being sick. Well, I got the feeling a few days ago, and today I have had it all day long, which somehow turned into me dancing and singing like a crazy fool around the house in my headphones singing Carly Rae Jepsen songs.
“Rise above the storm and you will find the sunshine” (Mario Fernandez). It couldn’t be more true for me right now. Last year, I basically experienced a living-hell. If you know me at all or have kept up with me via Facebook or my blogs you may know a little bit, or maybe even a lot about of what I’ve endured. The storm (more like a category 5 hurricane), came and went, the fog followed shortly after, and now I can finally see the sun peaking through the clouds.
As I mentioned earlier, I have always had in my mind that big things were eventually going to come my way, but I just didn’t really know what I wanted or where I wanted to direct my energy towards. My aunt has also always had a big vision of what her future would hold, which would include helping people in some way, but she wasn’t exactly sure how either. In the past couple of years she has been brainstorming several ideas, but it is not until I got ill, that Caryn and I realized that our own strengths and weaknesses complement each other, and we make a great team together.
With that being said, we have formed a community outreach group called COPE (Community Outreach for Purpose and Empowerment) which we have just recently launched this week. I have been working hard to put together the website, Facebook, Twitter, yada yada and it is up and running. Caryn has been really excited for COPE, and her energy feeds right into mine, and then I start to get excited. It’s hard to say exactly where we are going from here, but what I am certain of is that the combination of Caryn and myself with our driven, resilient minds, and huge dreams collaborating together, there is not a doubt in my mind that we are going to change people’s lives.
As horrific and terrifying this past spring/summer was for me, I could not be more thankful for everything that has resulted from it, because it has gotten me to this place that I am at now. Besides bringing me back home closer to my awesome, one-of-a-kind, loving family, my frame-of-mind is like it has never been before. I think it is a mind-set that I do not see many others experiencing for themselves. I am not convinced that many people out there dream like I dream. Even if they do dream big like me, the difference between my dreams and their dreams is that I actually believe that my dreams are going to come true. My aunt is the same way. That is why we make a great team together, and that is why COPE is going to be awesome; because we will not let the opportunity arise for it to fail.
This past year has been a test for me. I had many chances to give-up and throw the towel in. It was a test of my inner strength, a test of my character, and a test of who I am. Each illness or set-back I acquired was an obstacle. I had to be patient and overcome all of the “obstacles” thrown at me. It was, and still is difficult sometimes, to have your entire life changed. It has required great patience, and ask anyone in my family, “patience” isn’t exactly my greatest attribute. Somehow, I was victorious over impatience and even though I was deathly ill, I have been successful in overcoming every obstacle in my way thus far. I did not just overcome the obstacles, but in some ways, I came out even better than before I was sick.
I have learned so much in the last few months about life, about myself, and what is truly significant. I’m sure it is difficult to relate to me unless you have walked in my shoes, because I don’t even know that “me” a year ago could even relate to myself now, simply because I, myself, had never experienced anything of this magnitude or of this great importance before. I mean what is of greater importance than your own life? It took me practically dying on more than one occasion for me to come to the realization, that this is my life, this is my body. Any change I wish to see in myself, and any goals I want to pursue, has to start with me, and nobody else. I understand that what I went through is not exactly easy for everyone to relate to because they haven’t been in the same near-death situation, but what I can offer is a deeper appreciation for what is meaningful in life. No matter who you are, or what you do, something is of meaning to you, and I learned that no matter what you previously thought was of great meaning to you, nothing outweighs your family, friends, and most importantly yourself.
What I am here to say today is that everything that happened to me, happened for a reason. Of course, my life would be so much easier and less expensive if I did not need a liver transplant or two major brain surgeries, but it has made me who I am and the person I was supposed to become. I will embrace what I have learned and who I have become and live this new, totally different life-style with great meaning that I hope to share and inspire others within our newly-formed group, COPE, and in my day-to-day life as well.
You can check out our website and other contact info at: