Seventeen Years Ago My Life Was Changed

I was a ten year old kid, living life, not a care in the World, playing baseball and trying to figure out how many fruit roll ups I could buy in the cafeteria for three dollars. For months in the summer of 2003, I was feeling tired and started developing a rash all over my body. I went to the doctor and was told I just had “growing pains” and a minor case of eczema, unfortunately I was misdiagnosed and the problems I was having were far worse than anyone could have imagined. I was diagnosed with a life-threatening disease called Dermatomyositis.

Dermatomyositis is an autoimmune condition that causes skin changes and muscle weakness. Symptoms can include a red skin rash around the eyelids, red bumps around the joints, and muscle weakness in the arms, neck, back and legs. 

When you’re a ten year old kid you don’t calculate the mortality rate of a disease or even what a mortality rate is, you can’t calculate the fact that cancer and this disease can sometimes go hand in hand and you for sure can’t understand that the muscles and heart can shut down and it can all end instantly. This wasn’t something that I defeated easily, I battled this illness for twelve years, from the age of 10 to 22 I woke up and battled this everyday. The lasting impact of this disease is still felt on me, my mental state and my body have been pounded by this disease. I am 27 years old and I still feel the impact of this disease and I have buried a lot of it deep down and haven’t discussed it with many people. There were days where I couldn’t get out of bed, I couldn’t walk, couldn’t lift my head off the pillow. I was told I would never walk again, I was pushed around in a wheelchair for a period of time and I saw the way my life was changing. Perhaps that’s where the depression and anxiety started, not knowing what it was, I just moved forward. This wasn’t a stretch of easiness in my life, I was battling the disease, then my parents divorce, then the reality of becoming an addict and being overflowed by alcoholism.

Every week for ten years, I would spend my entire Friday at Albany Medical Center receiving IV treatments and once a month I would spend eighteen combined hours on Thursday and Friday receiving an at the time experimental IV treatment that ended up saving my life. The migraines and vomiting were only a small part of the problems that this treatment would cause. From the ages of 13-17, I would receive treatments, leave the hospital and go play baseball, trying to be the best teammate I could be. I would play every game, unable to put my cleats on by myself at certain times, I would find a way to strap it on and get out there and compete the best way I could. I did it quietly, this was the attitude I took when battling this illness, on top of the treatments I would receive, I was taking over 60 mg of steroids and four other pills everyday and an at-home shot once a week on top of that.

I knew that when I was diagnosed and I spent days at a time at Shriners Children’s Hospital seeing kids who I thought was in far worse shape than me, that I had to do something to make a difference. At the age of ten years old, I formed my own foundation called “The One Base at a Time Foundation” and we raised over $50,000 for Dermatomyositis research. We made donations to CureJM, Shriners Children’s Hospital and the National Institute of Health. I participated in experimental drug testing and research studies in order to try and make an impact with this disease, these were scary times but I felt like this would move the chance of a cure forward.

To put a face on this disease because you are probably wondering who am I and why does it matter, there have been a few notable people who have suffered from this disease. Ricky Bell, the Heisman Trophy Runner-Up in 1976 and was the number one choice in the 1977 NFL Draft died from heart failure caused by the disease at the age of 29. Another member of the Dermatomyositis family was Academy Award Winner Laurence Olivier who battled the disease from 1974 to the time of his death in 1989 at the age of 82.

I have been very vocal about my battles with addiction, my alcoholism and how much I have struggled and battled that “disease”. I always questioned whether or not that the alcoholism was a disease because I battled a disease I considered to be more real but never the less, for some reason, the alcoholism was a much more easy thing for me to discuss publicly. As I get older, I think it is more obvious for me to realize the complications this disease has had on me, whether it be my mental, physical or emotional well-being. I have thought long and hard about what type of impact this illness has had on me and I know the one thing it has taught me: I don’t give a fuck about your opinion of me, I am who I am and I have been through so much shit that your eyes would roll to the back of your head by the time you finished reading it. Life is short, you can be dead tomorrow and if you want to spend your time judging people and not having fun, well, I feel sorry for you because you are probably a miserable, judgmental type of person and I wouldn’t want to waste my time with you anyway. We are all messed up individuals who carry a giant backpack full of past problems and struggles, appreciate everyone’s journey and lay off the judging, you don’t know where people have come from, the mindset and why they are the way they are. So, I used to try and impress people or make people feel a certain way about me but frankly, you don’t know what I have been through, so I am unapologetically me, moving forward. As a wise friend once told me, always forward, forward always.

There were dark times during this battle and I obviously need to thank my family, especially my Mama but a few friends were there for me and went about and beyond. They came to my house and sat with me, came to the hospitals with me, sat by my side while I received hours of IV treatments, those guys helped me move forward. Shoutout to Ciof, Mike, Nolan, Zite – during those tough times, you guys were there and I will never forget that.

If you have read this far into the blog, thank you and I appreciate it and implore you to donate any amount you can to help find a cure for this disease. If you find it in your heart to make a donation, send us a confirmation of donation and ProcrastiNation Sports will match all donations from now until December 31st 2020.

See Here To Donate: https://www.myositis.org/donate/

If this illness or the ramifications of this someday strikes me down and that is how I shuffle off of this earth, then so be it. I have been blessed beyond belief with a beautiful wife, phenomenal friends, a loving family, a great job and some hobbies that put a smile on my face. Receiving bad breaks are a part of life, remind yourself that it is not how hard you hit but how hard you can get hit and keep moving forward, how much you can take and keep moving forward. Peace and love to all my procrastinators.