Cody Williams, diagnosed in January 2014 at age 55.
Died January 5, 2017.
Here I am. A black man from Detroit’s Westside, living in Connecticut, a single dad with two kids, a man of faith, a writer, technology consultant, and for a lot of people all over the country, I have become a black face of Amyotrophic Lateral Sclerosis, ALS.
ALS is the ‘worst’ of the degenerative neuromuscular diseases. It disables you one muscle at a time. I’ve noticed that my fingers shake more than they did a few weeks ago when I use them to eat. I need a bib most days, so I don’t eat in front of my kids, not unless I’m eating something I can grab with my whole hand like a hamburger or piece of sausage or toast. I can only walk with assistance. I started running as a kid around Hammerberg field in Detroit. We played softball there, and at night we would swing and jump from the bars behind the bleachers. That television show, “Wipe Out,” has nothing on us. If someone in our neighborhood didn’t break an arm or leg each summer growing up in our Detroit neighborhood, we did not have fun.
While I started out running on Hammerberg’s track, I spent a lot of my life running the parks, lakefronts and beaches of the world to stay in shape. By the age of 52, I had done a pretty good job of saying fit. Yes, I was in shape and needed to be. I had two kids under the age of twelve to keep up with. As a single dad now living in Connecticut, my life was camping, softball, 5k runs and Central Park rock climbing. My son and daughter loved it all and I loved growing up with them all over again.
Then, exactly two years ago it hit me. Taking my morning shower wiped me out. It drained me of all of my energy. I had to lay back down on the bed just to recover. I started losing weight and wanted to sleep a lot. My kids even noticed and gave me a contour pillow for Father’s Day. Something was really wrong. I needed to see a doctor. I had good insurance at the time and went to one of Connecticut’s best medical groups. I had lost almost seventy pounds and had completely lost my appetite. We took tests, 18 months of them. By the time I was down to 115 pounds, I got a diagnosis. My doctor told me that I was “depressed and had asthma.”
“I’m an artist. I know what depression feels like, and I’ve had asthma all my life. This does not feel like asthma or depression,” I told her. She insisted and a group of her experienced colleagues agreed. She prescribed me heavy anti-depressants and told me to eat more junk food: Big Macs, pizzas, milkshakes. I tried, but kept rapidly losing weight. The anti-depressants made me tired and loopy. I got down to 108 lbs of skin and bones from my former 215 lbs of lean muscle. I was dying and it was clear, except no one knew from what. I had gone from the biggest person in my home to the smallest. I was weak and needed my 11-year-old daughter to open bottles for me. My doctor insisted it was depression. Some in my family even whispered it was AIDS. Even though I had done nothing to contract that disease. With each day, I felt myself slipping away from here, slowing dying. Some nights I actually felt death lingering in my room. It looked up at me, grinning from the shadows in my bed covers. But I could not leave my children. I fought back with prayer and laughter. Others prayed for me. Friends brought me meals. One, the Rev. Dundee Holt even took me in, set me up in his living room and had his church mothers feed me three meals a day. He took me from appointment to appointment. Finally one frat brother suggested I see a pulmonologist, who took one look at my dragging right foot and told me it was probably ALS.
“Lew Gehrig’s disease?,” I asked 18 months after I noticed the first symptoms. They told me there was no cure; that I had maybe three to five years to live from the onset. They announced that I may go into respiratory failure at anytime and placed me in hospice. Hospice. I thought about my children. I was not afraid of dying. I was afraid of leaving them here on earth without me to protect them.
For 18 months I had been misdiagnosed by the so-called “best” of them. Black men are not usually diagnosed with ALS. 90% of the 30,000 people who are found to suffer from the disease yearly in the US are white. With over 70% of them being men. ALS is not generally thought to be a black person’s disease. And look at me, I thought to myself. The blackest man in America dying of a white man’s ailment. What luck? The ghosts at night were real. My goal now was to keep them away from my children.
According to one population-based mortality study conducted by T. Zaldivar, MSc, MD, ancestral origin is likely to play a role in ALS susceptibility. His team of researchers concluded that there is a reduced frequency of ALS in ‘ethnically mixed populations.’
Well, here I am. A black man. But since then I’ve talked to many black people who have told me, “my grandmother died from that disease.” Detroit’s Dr. James Blessemen says he sees many black ALS patients.
My unscientific guess is that more blacks may have ALS, but they die long before there is an official diagnosis. It took over 18 months to diagnose me and I diligently pursued my doctors for an answer to my ‘wasting’ away. The average ALS patient lives only three to five years after diagnosis.
Today I live on life support. There is a machine that breathes for me. I get tube feeding and use a catheter to pee. I just turned 56. I had to leave my home and job and move into a skilled nursing facility. My son started high school and I was not there to show up with him on the first day, like my dad did at Cody High school in Detroit with me. There is a whisper in the medical community that a cure for ALS is no more than five years away. Coconut oil and magnesium are said to slow the progression. I take them daily. The kids come and play in my room for hours at a time. Sometimes I cry when they leave. I never let them see me do that.
With the ice-bucket challenges and walks like the one to be held in Detroit on Belle Isle on September 27th at noon, maybe this ALS thing can be beat in time so I can see my daughter graduate from high school.
Sometimes I wake up in the middle of a quiet night to someone breathing next to me. For a second I am not alone anymore, until I realize, it is the machine that breathes for me.