‘Walk and Roll’ group Aug. 24 at Battle Creek Park, Maplewood, MN. Photo: Zacharey Chopek, GBS-CDIP Foundation International
Anyone wandering through Battle Creek Park in Maplewood, MN, Sunday, Aug. 24, may have seen about 80 people walking in a group, some carrying signs, or wearing red or blue shirts proclaiming, “Walk & Roll.” Also, in Spencer (IA), Seattle, Chicago, Pittsburgh, New York, Washington DC, Houston, Phoenix, San Francisco, Los Angeles, Portland.
The annual event raises awareness and funds for a group of related medical maladies, one of which is called Guillian-Barré Syndrome. Had my schedule allowed, I would have been among the walkers in Maplewood, thankful that I was walking and not rolling. The latter was my transportation in the fall of 2018, when I became one of the 1.7 in 100,000 people so afflicted annually in the U.S.
Guillian-Barré Syndrome, or GBS, is a mysterious disorder where some unknown virus or other organism tricks your immune system into attacking your nervous system. Your immune response destroys the sheathing around nerve fibers. Like an electric wire that loses its covering, your nerve fibers become damaged and cease to function. I became totally paralyzed. My only hope came when my doctor said I would recover, mostly. Left untreated the prognosis reads ‘fatal’, as it did on my medical record.
You may be familiar with some ‘celebrities’ with GBS. A search finds 44, among them: Andy Griffith, Joseph Heller, Christopher Cross, Luci Baines Johnson, Hugh McElhenny, William “The Refrigerator” Perry. Okay, some of those names are foreign to younger people. Some historians speculate that it ailed Franklin D. Roosevelt, who rode around in wheelchair. Even farther back, some scholars see evidence of it afflicting and causing the untimely death of Alexander the Great in 323 BC at the age of 32.
No laughing matter
Joseph Heller, the author of Catch-22, wrote an entire book about it. In No Laughing Matter (1986), Heller and co-author Speed Vogel cover his struggle with GBS from 1981 to 1982. Vogel, Heller’s longtime friend, helped with Heller’s rehabilitation and served as his public face during that time. I didn’t read the book; it was not necessary.
The main point here is not so much my personal experience with such misfortune; rather, my admiration and thanks for health care workers. Visiting a doctor’s office, even undergoing surgery or other major medical procedure, is enough for most people to take.
When the malady becomes life-threatening and continues for weeks and months, the health care people become your saviors. The experience has etched into my memory the care given by doctors, nurses, aides, and therapists. I will always remember Kelly, Mark, Rosita, Jeffrey, Stephanie, Carrie, and a host of others. It elicits empathy for the thousands of health care workers who lost their jobs at the VA hospitals.
Research has done much to identify the GBS variants and treatments, but so far the causes and prevention remain elusive. The effort to find the answers continues from support by the GBS-CDIP Foundation, which sponsors the Walk and Roll events. Meanwhile, we remain thankful for the medical professionals providing the necessary care.
Also, medical paraprofessionals, which describes my part-time work during college as an orderly in a St. Paul hospital many years ago. I have no idea if any patients at the time were afflicted with GBS, but the services they required were similar. Mostly, it was lifting people to where they needed to be. Many of them were so thankful, which I didn’t really appreciate at the time. I do now.
Health care system ailing
While the frontline health workers deserve great admiration, there is less enthusiasm for our health care system in general. It’s absurd that the U.S. can’t seem to institute a public health care system as have other major countries. With the power entrenched in medical suppliers, insurance, and pharmaceutical companies, politics matters more than efficient economics.
The proposed cuts in the “big ugly bill” to Medicare and other social programs should enrage the general public. We far outnumber the ultra-rich who are getting tax cuts at the same time. Billionaires don’t worry about paying for medical care, and they don’t care if millions of Americans struggle to do that.
In my experience I am very grateful for employment that provided excellent health care insurance. The sticker price in my case approached nearly $300,000. While I lay paralyzed, I insisted that my wife not open the first statement received from our insurer. I knew that it would not yet reflect the coverage that insurance would provide. She looked anyway and thought we were headed for the poor house.
Unfortunately, that is the case for too many people. And with pending cuts in Medicaid and possibly Medicare, there will be more. If we survive the current assault on our government, and if Americans can wake up to the necessity of a comprehensive public health care system, perhaps we can achieve something better than we now have, better in the sense of governance, structure, and financing.
Despite the challenges and faults of the current system, we should be thankful for all the medical staff who provide the care while weaving through the current labyrinth of insurance companies, suppliers and hospitals. Without my family, the caring staff, prayers, and seven infusions of (very expensive) immunoglobulin, which arrests the destruction of nerve fibers, I would not be here. I am thankful to have survived.
