May 17, 2011
“I am planning to go on a hunger strike to publicize the plight of the chronically ill. The World Health Organization said that chronic illnesses have reached global epidemic proportions and now cause more deaths than all other diseases combined. Yet, it is harder every day for me to find help for the people who call us in desperation.”
Desperation. I know that word.
This was in an email from Jennifer Jaff, an attorney who heads up Advocacy for Patients with Chronic Illness. It is hard to know if Jaff’s professional frustration drives desperation or if it is personal pain. Jaff lives with her own chronic conditions. Jennifer fights Crohn’s Disease and a painful inability to digest food, accompanied by chronic nausea. “People are quietly dying. They have invisible illnesses, so they face disbelief and a lack of support and understanding.”
Desperation is an odd emotion. It is intense, dark, hopeless at its core. Sometimes desperation is wild and out of control. Then it becomes frightening. Faith in the future crumbles quickly. I have been there. Colon cancer was a cakewalk compared to vanishing vision or limbs gone numb and useless from MS. Too often these bring structural change in the body, destined never to know the cyclical swing back to normalcy.
Days ago, I walked through Pennsylvania Station, headed for a train to Washington, D.C. A lightweight bag was slung over my shoulder, sparsely packed to avoid weighing myself down. Halfway across the large waiting area adjacent to the gates, I knew I was in trouble. I could not take another step, and as my legs wobbled uncontrollably, I thought I would crumple to the floor. I had a video in my head of impatient travelers just stepping over me. I felt defeated. Defeat turns to desperation quickly enough.
I was approached by a woman who worked for Amtrak. She said, “You need a wheelchair.” She did not ask but just told me. I nodded and said nothing. Ten minutes later, I had rolled to the train and was in my seat. Is this my life now? was all I could wonder. Rapid-fire memories of sprints down war-torn streets in Beirut and diving under cars to escape gunfire in El Salvador flashed through my mind. I sat in an empty train car, yet to be opened to the chronically healthy and able bodied. I wanted to cry but figured that was not an option on a train soon to be crowded.
On the ride to the nation’s capitol, I opened The New York Times and came across an interview with Stephen Hawking, the renowned British physicist and authority on the cosmos. Hawking suffers from ALS, Lou Gehrig’s Disease, and has spent years in a wheelchair. He only can talk using a computer generated voice. In the Times interview, Hawking was asked what advice he would offer a person diagnosed with a serious disease.
“Concentrate on things where disability doesn’t prevent you doing well, and don’t regret the things it interferes with,” he answered. Then Hawking added this thought. “Don’t be disabled in spirit as well as physically.” This man is horribly disabled, yet he projects a peace of mind I find startling. How can I get to that place?
I do not think I am disabled in spirit. I do feel free occasionally to mourn a man I often hardly remember, the me I once was. I believe that can be healthy, as long as the word, occasionally, stays in the sentence. Loss can not be denied. When I left the train, I found myself stranded on a platform at Union Station, still unable to take more than a few faltering steps.
“Hey Buddy,” a voice rang out from behind. “Get on.” An Amtrak worker drove the baggage cart on a circuitous route through and under the station to the front of the cab line. He pulled a taxi down from the many waiting in line, and in an instant, I was on my way past the U.S. Capitol and headed to my hotel.
I learned a little about saving my spirit and accepting help from others that day, though peace of mind is not in my DNA. I am deeply fearful of the future. My illness is progressive. My body weakens and function departs, slowly but decisively. I know which way I am headed, and I feel helplessness closing in.