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
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.
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.
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.