By Steven Johnson
Super Bowl XXV started off like most championship football games, but this one would have a very different ending. The Friday before the big game, it was my chance to place a bet. Why I chose the Buffalo Bills, I have no clue, but I went ahead and did it. The bet was with an occupational therapist at a local nursing home where I was a resident for the past three plus years. At the age of 26, I found myself living, no, surviving in a place that no 26-year-old would ever expect to be. For the past three years, I had endured long days of renal dialysis, incredible sickness, and not to mention trying to get around the nursing home in a wheelchair while being totally blind. It was 20 years earlier that I was diagnosed with Type I Diabetes, and it would be this disease that would eventually take my eyesight and kidney function.
The bet was a simple one–a reusable grocery bag from our local food cooperative of which I had been a member for the past two years. My occupational therapist got me involved, and I would find myself volunteering at the store bagging bulk food items and just helping out wherever I could.
She always pushed me to do more since she knew I could, but the years of dialysis were now wearing heavily on me physically, emotionally and psychologically. Less than a month earlier, I had made a decision that would change the course of my life when I decided to stop dialysis. I knew the outcome very well as I had seen a couple of very close friends do the same thing as the dialysis took its final toll. I knew that within 72 hours, I would expire. Yes, I was prepared to die, knowing that I did all I could do, but couldn’t do it any longer.
I always looked forward to the NFL season, and with hope and even a prayer, dreamed that the Green and Gold would once again claim the world title. Super Bowl XXV would see two different teams in the big game once again. It was a great game as it went down to the final seconds when alas, the New York Giants kicked a game-winning field goal to claim the Lombardi trophy. Dreams were shattered once again, a bet lost, and a long day of dialysis awaited me as the weekend seemed to make that following Monday incredibly long.
Earlier that month, the decision I made had a profound impact on me, but not necessarily on all of those who surrounded me. But there was one person who gave me something that no one else would or could, and that was hope. You see, it was my doctor who sat down with me to hear what my wishes were. He respected what I had to say, but he offered me a unique insight that again no one else had done. He said, “Yes. You are blind, in a wheelchair, and on dialysis, but you are a bright young man, and you have so much to give.” He went on and simply asked me to not give up, and he promised me that I would receive the call that I had been awaiting for the past three years. I promised him that I wouldn’t give up, and that I would do what I could to be strong.
It was now Monday, January 28, 1991, and it was just like I had thought–a hellish day on dialysis. The extra day without dialysis meant that it would be extra hard on me that day. I was also notified while on dialysis that my roommate had passed away. He was an incredible man, and was a jazz drummer who played with some of the jazz greats like Count Basie, Satchmo and Gillespie. It was my time to respect him as he and his family deserved it, so when I returned to the nursing home, I would not return to my room, but instead wander the halls aimlessly until suppertime when I was told I could go back to the room.
I would often lay across my bed cross-wise, wondering, dreaming, hoping and listening to the radio or television. Supper was eventually offered to me, but I was so incredibly sick after dialysis earlier in the day that I once again had refused. I listened to all that was going on around me–the chatter of the television and even the tray cart in the hall, but all was suddenly interrupted by my phone ringing.
As I answered it, I expected it to be my mom who faithfully called me daily to see how I was doing. It was not my mom, but rather the University of Minnesota Transplant Center. I was literally speechless as the person on the other end informed me that they had a kidney pancreas match that looked like it was going to be a possible match for me. They had to verify one more thing to confirm the match, and they would call me within the next 15 minutes regardless of what the answer would be. I immediately called my mom and told her what was about to unfold. I couldn’t believe it, and I didn’t want to get my hopes and dreams up too much, as I kept wondering if this could finally be it? The phone rang a few minutes later, and the voice on the other end said, “Steven, congratulations, it’s a go!”
My life changed forever from that point forward. I was given a second chance at life– something that so many were never given, and that is the simple gift of hope. It was my doctor who gave me hope to continue on in this life, and gave me the confidence and strength to believe. I wanted to thank him for all he did for me, but regrettably, this never happened.
One very late winter evening at the University of Minnesota as I was getting ready to be discharged later that week, I suddenly had a strange urge to call the nursing home to leave my doctor a message informing him that it was likely that I would be discharged soon. What I was about to hear threw me into a state of shock as I was informed that my doctor suddenly died of a cerebral aneurysm at the age of 35, while skiing with his daughter in Michigan. I never got the chance to thank him, and I realized that something he gave me still lived on in me.
A few years later, I would discover that I would carry his spirit forward in the work I perform daily as a human service professional. You see, as I work with those who are facing the most difficult of times, it is I who now gives these individuals something that helps them to move forward, and that is nothing more than hope.
I will celebrate the 23rd anniversary of my kidney/pancreas transplant on January 29, 2014. A day never goes by that I don’t think about this in some way, shape or form. The reason I am here today is quite simply because I made a promise to believe, and I am proof that miracles do happen.
Steven Johnson lives in La Crosse, Wisconsin with his dog Bennett and serves on the board of the Wisconsin Council of the Blind and Visually Impaired.