By Teresa Swartz Roberts
Blog post 5. Copyright 2016
*Muhammad Ali died June 3, 2016 after a long bout with Parkinson’s Disease. He was arguably the most well-known athlete in the world for much of his career and beyond.*
It was impossible to ignore Muhammad Ali. It was impossible when he was fighting. It was impossible when he was being mourned in Louisville a few weeks ago. It was impossible to ignore his long battle with Parkinson’s Disease, the degenerative neurological disease I was diagnosed with 17 months ago. I cannot do any kind of justice to Ali’s life, career, or experience with Parkinson’s. What I can do is see his death and the grief that surrounds it as an opportunity to take a look at Parkinson’s from a new viewpoint, one I avoid. As good as my life is, as grateful as I am for the reprieve I have been given while meds and therapies are working miracles on my body, Parkinson’s is looming so big over my life that sometimes it’s hard to see myself.
Ali was the first athlete I remember. I remember the controversy surrounding Ali’s refusal to fight in Vietnam and a grown-up-sounding conversation with a gradeschool friend about it. I remember his style and his rhymes. I remember Ali as the first person I ever heard call himself a Muslim. I was impressed when I learned Cassius Clay’s first professional fight was with the man who would later become police chief in a small West Virginia town I covered as a reporter. I was impressed with myself when I was an extra in a movie filmed in the Maine venue that produced the Phantom Punch. I remember when Ali got sick. Now that he is gone, I hope to remember Ali and not just his Parkinson’s.
Possibly because I am in a good place with my illness, or possibly because PD is such a big part of my life, I find myself telling people I barely know that I have Parkinson’s. Maybe doing it now seems easier than it will be later. Or maybe I want attention.
When my husband told his Facebook friends that I was back to my old pre-symptom self, I was upset with him because I realized he didn’t know how hard I was working on battling my symptoms. I apparently needed recognition. I definitely got it the week after Ali’s death. I had told some folks at my new church about my Parkinson’s. The Sunday after the funeral was on TV, several people came up to me and earnestly asked with furrowed brows, “How are you doing?”
The answer is “Good.” And it’s the truth.
I am truly blessed. An acquaintance, learning there is no cure for Parkinson’s, said, “Unless God decides to heal it.” I told him, quite sincerely, that I had already been given a miracle. Seriously, the first day of physical therapy I fell against the wall in a public restroom, pulling a call cord with me and sending nursing assistants rushing to the bathroom to help. The last day of physical therapy, and a month of meds later, I danced to “Uptown Funk” while bouncing a ball.
Fans hated to see the frozen man Ali had become as his Parkinson’s progressed. Sometimes I feel guilty for having the disease because of what it might do to my family. They love me and don’t want to see me sick. They have already been through Alzheimer’s Disease with both my mother and mother-in-law. They are limited by my limitations. I don’t take care of them the way I used to. I have lost a couple of friends for whom it is simply too painful to see me have the disease. I don’t fault them at all, and I wish I could tell them so without causing them more pain.
I try to avoid causing pain and aspire to bring some peace and joy to the people around me. It doesn’t always work. I’ve started flashing back to the Nancy Mairs essay I used to have my students read, “On Being a Cripple.” Among many insights, she notes that society has certain expectations of people with disabilities, that a “grumpy cripple” does not fit the profile. I’ve been flashing back even further to the newsroom term “cheerful cripple,” an insensitive label sometimes given the people who were the focus of the kind of inspiration porn that used to round out the Sunday paper.
My husband, who like me lives with disabilities, has been called an inspiration so many times that we joke about it. He actually is an inspiration, having taken up power lifting and strong man competitions at the age of 40 and dancing in every Zumba class offered at our gym while preparing for and recovering from hip replacements. He’s an inspiration for picking himself up after having his job eliminated without warning and building a new life for us. But he can tell you as well as I can that it’s not easy living up to the inspiration description. Sometimes it sucks.
Sometimes strangers avoid getting on an elevator with my husband when they notice his cane. Sometimes people say “I’m sorry” to me or my husband simply because we occupy the same bathroom or hallway. I admit to using the cane as a symbol to let people know that I am off balance for a reason or that I really do need the bathroom stall with the bar on the wall. I have told dozens of people that I have Parkinson’s. I write these journals. Am I feeding stereotypes and letting the disease define me?
Maybe. Parkinson’s is a big part of my life. It is a big part of me, like being female or white. But it is not all of me. I hope the people I love will see me, not just my disease. I hope I will see myself.