A little over two years ago, my life (and everything that I loved in my life) began to implode. I found myself confronting issues that I had been trying to suppress for years. It wasn't drug addiction or alcoholism, nor was it depression or abuse. I was struggling with the complications of living with a neuromuscular disorder, one that has had me confined to a wheelchair for over 40 years.
For most of my life, the journey has been filled with opportunity and moments of awe. I know what it's like to fly "private" and I've traveled around the world having experienced the rush of performing songs that I've written, in front of audiences as large as 65,000. I've loved and I've been loved and through it all, I've never let my wheelchair deter me from living "the dream." And then one day, I was forced to wake up.
It was a particularly bright and sunny California morning in 2012 when I woke up to the sun heating my room like an inferno. At first I was frustrated with myself because I had forgotten to shut the blinds before I went to sleep. I quickly found out, that was to be the least of my problems on that particular morning. Normally I would transfer into my wheelchair and reach for the blinds and then shut them, but this time I not only couldn't (physically) get myself out of bed; I couldn't even reach for the wheelchair in front of me. I desperately tried pushing myself towards the edge of the bed, but I simply didn't have the strength to do it. I couldn't even pick up my cell phone to call for help. It was as though I had become paralyzed, but yet I could feel everything. There was no pain, only the pain that is found in anguish. Every little effort to move my body set me back further into the abyss of weakness. I started to panic. I was so overwhelmed with frustration that I wanted to scream, but I couldn't even shout inappropriate four letter words... my speech had been ravaged as well.
When I was two years old I was diagnosed with Duchenne Muscular Dystrophy. My parents had noticed that I had been falling a lot more than my older brother had at that age, and so they brought me to the doctors to be tested. I can't imagine what it must be like to hear a doctor tell a parent that their child will not live to see their high school graduation, but that's what my parents were told. My mom once said to me that the doctor gave her the best advice when he told her, "Raise your son just like you would the rest of your children." And so, she did. Then, after reaching the ripe old age of 17, it had become pretty clear that the doctor's advice was right, but the diagnosis was wrong.
I was around 18 when I was re-diagnosed. By this time, I had been attending Muscular Dystrophy clinics throughout my childhood and it was always an exercise for me because I would go to those clinics kicking and screaming! I couldn't stand the process of being paraded in front of interns and other medical students because it always made me feel more like a guinea pig than a patient. By now my original doctor had retired and was replaced by a much younger doctor and he was sure of one thing, that I did not have Duchenne Muscular Dystrophy. After undergoing a series of tests to determine a more accurate diagnosis, the doctor reached a conclusion. He was baffled. I remember seeing the expression on his face as he was trying to explain to me what the tests had revealed. He was completely and utterly dumbfounded. Apparently now I had not fallen into any specific category under the Muscular Dystrophy umbrella, and better yet, it was even possible that I may not even have Muscular Dystrophy. Because of this, further tests were needed and that's when I decided that I had had enough. I was old enough to make my own decisions, and so I chose to move on, knowing what my limitations were, I willfully accepted the fact that I'd be just fine without a diagnosis. My dad had always preached to me and my siblings while we were growing up, "It's mind over matter." He'd follow that with, "Don't say can't, there's no such word... just say CAN!" So I took my dad's advice, I chose CAN, and I CANNED the doctor!
As I cursed into the morning sun on that horrible day in 2012, I could feel the tears beginning to fall. The heat from the sun was making everything even more miserable. Then this overwhelming sensation of self-pity began to consume any shred of positive energy that I had left in me. I beckoned my dad's mantra, trying desperately to convince myself, "you can do it... you can get out of bed," but this time it wasn't working. It took me around 45 minutes to get into my wheelchair that morning, but I did it and I never spoke a word of it to anyone. I didn't want that experience to weaken my character, and so all I could do was to pray that it was just something that would go away... but of course it didn't.
My faith in doctors and medicine had never been strong to begin with, but when my beloved mother died of Non-Hodgkin's Lymphoma in 2006, drugged and prodded by every needle available, I was certain that doctors and medicine-makers were behind it... preying on the vulnerable and the weak. Isn't it funny how views can be changed when you feel as though death is standing in front of you holding the door wide open? You instantly become "the vulnerable and the weak."
Over the next couple of years, I had learned how to live with my (now) debilitating disease. I postponed, canceled and even lied about why I couldn't attend lunches, dinners, concerts, parties, etc. because I never wanted anyone to know my despair. I had prided myself on being that guy in the wheelchair who was gregariously in love with life! In many ways, I was doing what lots of people do in Hollywood: I was living the proverbial facade of smoke and mirrors. But eventually all truth must be dealt with.
In March of 2014, my dear friend Paula Abdul invited me to join her in Sydney, Australia. Paula was the head judge on Australia's version of So You Think You Can Dance, and because she knew how much I had wanted to go to Australia she invited me to join her. Even though I was physically in no shape to go, this was an opportunity to visit a country that I had longed to see since I was a teenager. I gratefully accepted her invitation and flew to Sydney; however, during the end of that trip, I had collapsed in Paula's apartment while she was in the middle of a press interview. I was sitting in my chair in the bathroom and I had reached down to pick up a towel that had fallen on the bathroom floor, but I couldn't lift myself back up. My mind had tricked me into believing that this was a task I could still take on, when in fact, it was one that could have proven deadly.
As I tried to pull myself back up into a sitting position, it occurred to me that my 375-pound electric wheelchair was against the bathroom door, and a rescue would be very difficult to achieve. I called out for my friend (Paula's assistant) hoping that she would figure something out, but I was unable to yell loud enough, or so I thought, and then I heard, "Donnie, are you calling me?" Upon realizing that I was in peril, my friend desperately tried to push open the door to rescue me. The most she could do was to get the door open by just a few inches, just enough room to get her arm inside where she was able to grab the back of my shirt. She pulled on my collar with all of her weight and I prayed that the shirt would not rip because I would have certainly fallen onto the marble floor where I could have potentially broken my neck. After a few harrowing attempts, I was sitting upright with the only harm to me being a broken spirit.
I was so mortified by what had just happened in that bathroom that I broke down in my friend's arms, and then again in Paula's.
Immediately upon returning to the United States, I called a doctor at the Muscular Dystrophy Clinic at UCLA and I scheduled an appointment. After completing a few tests to determine just exactly what was wrong with me, thanks to modern technology, I finally got an official diagnosis: I have a very rare form of Congenital Myasthenic Syndrome, or CMS.
My doctor told me that he would like to prescribe a couple of medications that I could "experiment" with; hoping that one of them may strengthen some of the muscles in my body. Now whenever a doctor says "experiment," it raises red flags for me, so I immediately told him that I would rather not take any drugs if that was at all possible. Explaining that without experimentation, there was no real way to treat this rare form of CMS, so I decided to surrender to his expertise.
From that appointment I drove to the pharmacy and collected my drugs. I sat through a brief discussion with the pharmacist, who gave me the run down on the side effects of Albuterol. That's right, the stuff that people with Asthma take, only in pill form. I felt so much better after learning that this was a drug with very little risk, and I had known dozens of people who used those inhalers without any complications at all. I took my first pill and that night, what happened next changed my life forever.
Only several hours after taking that small white pill, in the middle of the night, I woke up to go to the bathroom. Normally I would get myself into my wheelchair and off I'd go, but this time (without even realizing) I instinctively walked the few short steps to the bathroom and that's when I realized what had just occurred. By now I was wide awake and all I can remember is sitting down and looking at the floor and I sobbed out loud. Years of sadness that had been conveniently hiding in the laughter, fell to the floor below me. This seemingly simple drug had changed my life in ways that to this day, I cannot adequately describe.
In or around 2006, apparently someone with my rare form of CMS (who also had asthma) was prescribed one of those inhalers. The next day that person experienced the same results as me, and unbeknownst to them, they had become the catalyst to this miracle. I guess that's how miracles happen: out of nowhere, and without warning... which is why we must be patient I suppose.
Today, gratitude has taken on a new meaning for me as I now experience a world that I have not witnessed in over 30 years. Some of the chains have been lifted... which feels like all of them have been. I am now able to walk short distances, and I can even stand up and touch my toes!
Life is full of promise once again, but at the end of the day, we can only find the miracles when we allow for the possibility of them to occur. Say "CAN" instead of "CAN'T"... always. That single letter will almost always change the outcome of your awaiting miracle.
I have a lot to be grateful for this holiday season especially on this day, my birthday. It seems even more important to me now as I embrace this re-birth with unyielding amounts of hope. I may not be jumping rope, and I certainly won't be doing cartwheels anytime soon, but thanks to an unexpected miracle, I am now #fullyalive (as my dear friend @TimShriver has so poignantly called his new book) and that is a game changer! My wish for you is to remember that no matter how difficult or impossible you may think it is to receive, you have a miracle waiting for you too... just believe.