A few months ago, I was walking along McCarren park in Brooklyn when I got a phone call from my mother that shook me. My uncle was diagnosed with ALS, she explained. It was Friday afternoon; she had waited to tell me until after work because she knew I’d be upset.
What started as a softball injury led my Aunt Patrice and Uncle Skip down a long and dark road of doctor visits, worry and ultimately a terrifying prognosis. My uncle, a cheerful and charismatic man in his 60s with an appreciation for red wine and a love of sports, had gone to the emergency room after being hit in the eye with a softball during one of his games. As it turned out, he was unable to avoid getting hit because, for some reason, his right arm didn’t respond in time to deflect the ball.
The weakness and lack of control in his right arm continued and eventually spread to the left. Several doctors told him it was ALS, and there was nothing to do but wait until he developed more symptoms. They gave him three years to live.
I had so many questions. I’d never heard of this disease before, either by the name ALS or “Lou Gehrig’s disease.” All I knew was that it would claim my uncle’s life and leave him paralyzed and helpless in as little as two years.
I did some tentative Google searches that left me horrified and upset— pictures showing completely immobilized and dependent beings who were playing sports and living normal lives just a few years earlier. I felt terrible for my uncle, who faced imprisonment in his own body, but I felt worse for my aunt, who would suddenly have to go from wife to caretaker.
So little is known about ALS; my aunt struggled to find information. Securing funding for research into a cure has been difficult because the disease affects only 30,000 people in this country, according to The ALS Association. It’s rare, and it’s brutal. Only about 20 percent of people with ALS live five years or more past the time of diagnosis, and only ten percent will survive more than ten years.
As the weeks went by, I had sorrowful phone calls with my aunt, both of us skirting around Skip’s health in the beginning but ultimately ending the conversation with sobs and words of encouragement. I dissolved into tears at home, out with friends, at work — whenever I pictured my aunt and what lay ahead for her. Hours of care-taking, countless trips to doctors, high medical bills, having to quit her job to watch the man she loves deteriorate before her eyes. I felt helpless.
Then a few months later, I began to see videos popping up on my Facebook newsfeed of people pouring water on themselves. I was surprised the first time I watched one all the way through and heard the drenched participant talking about ALS. Even more powerful was the growing trend of ALS patients participating. Soon, the Ice Bucket Challenge was everywhere, clogging Facebook, going viral on YouTube, filling Twitter with links about how to donate. Even those complaining about it made me happy because they were still talking about it, still bringing awareness to an unheard-of illness.
The timing seemed unbelievable to me — just as this insidious disease had descended upon me and my family, the world was doing something about it. I felt like I wasn’t alone.
It was right around this time, when the Ice Bucket Challenge was gaining steam and ALS was on the lips of so many, that it happened. We found out Skip was misdiagnosed.
A research doctor found nerve regrowth in my uncle’s arms. With ALS, nerves don’t regrow; they continue to relentlessly die off. A phone call from my aunt, giddy but “cautiously optimistic,” left me speechless.
Relief doesn’t come close to describing what we felt. My uncle most likely suffers from a nonfatal condition called brachial neuritis, an inflammation of the brachial plexus that causes shoulder and arm pain and weakness. But there’s still a small chance it could be a rare longterm form of ALS. If this is the case, my 67-year-old uncle could easily go another 20 years without showing any real symptoms.
I feel so lucky, but I also feel for those who weren’t as lucky. I have a unique window into the terror and despair of an ALS diagnosis. I know what it’s like to feel the shadow of this rapid and fatal condition cast upon your family. I know what it’s like to hug someone you love and wonder whether a year from now they will still be able to put their arms around you. I’m so fortunate because all I had to do was wonder, while so many others experienced these things firsthand.
For all those who didn’t get to feel the sweeping relief of the words “new nerve growth,” who do have to experience the swift and devastating effects of Lou Gehrig’s, I am so sorry. It’s in honor of all of you that I participate today in the Ice Bucket Challenge. For all of you, who I was so nearly one of.
If you’d like to make a donation to the ALS Association, head here.