In mid-February of 1979, I started experiencing tingling sensations in my feet and fingers. I told myself I was only feeling some residual effects from a bout with the flu several weeks before, and I caught the afternoon plane to Minneapolis to join my new boss, U.S. Sen. David Durenberger (R-Minn.), for several days of political meetings.
That was on Sunday. On Tuesday, midway through a presentation, I began slurring my words and I found it hard to swallow. A local doctor, on hearing I’d had the flu, told me to go to my hotel room, take a couple of aspirin and call him in the morning.
I spent the night moving from the bed to the couch to the chair to the floor, seeking relief from pain that was affecting more and more of my body. Just before dawn, I noticed that the right side of my face was paralyzed. On my way to the ER, the left side became paralyzed.
I wasn’t having a recurrence of the flu. A spinal tap confirmed doctors’ suspicions that I’d come down with Guillain-Barré syndrome, or GBS, a rare neurological disorder that can cause total paralysis. Within 10 days I was so weakened by the spreading paralysis in my legs and arms that I could not get out of my bed at St. Mary’s, the Minneapolis hospital where I was being treated. Within three weeks, doctors performed a tracheostomy — connecting a mechanical respirator to my windpipe — because my ability to breathe was getting so poor.
An autoimmune disorder that often follows a case of the flu, GBS strikes 3,000 to 6,000 people in the United States each year. Eighty percent recover fully. About 15 to 20 percent have lasting mobility challenges. About 30 percent require a mechanical respirator. And about 3 to 5 percent die from GBS. I was hoping the odds would be on my side. But when I regained consciousness in the ICU with a tube in my throat attached to a noisy machine to help me breathe, my hopes for a quick recovery faded.
Because of the respirator, I discovered I no longer had the ability to speak. I could still move my fingers and forearms — with great difficulty — but I knew that within days, I would probably be totally paralyzed. How was I to communicate basic needs to my nurses and doctors? How, if things got worse, would I be able to reassure my family — my mother was camped out in my room — that I had not lost my will to live?
Blinking my eyes “yes” or “no” in response to letters and numbers on an alphabet chart became my principal means of communication. When you’re paralyzed you can’t eat, so a feeding tube was inserted into my nose and down into my stomach. Nevertheless, the weight on my 5-foot-9 frame plummeted over the next several months from 165 pounds to 115. Powerful drugs propelled the waste through my intestines and out of my body since my own muscles couldn’t do it.
What a mess I had become.
Into my life, fortunately, came Sister Margaret Francis Schilling, a 73-year-old Roman Catholic nun who worked in the hospital as a medical photographer and had herself contracted GBS nearly 25 years earlier — and survived with only a slight walking impairment. Sister Margaret had found me within days of my admission and told me that she was sure I’d be all right but that GBS was totally unpredictable and there could be some rough times ahead. She became my indispensable champion, visiting me every day, providing advice, reading letters of support from friends and colleagues in Washington and holding my hand while she prayed for my recovery.
By the third week of March, the rough times she’d warned me about hit with full force. First, there was the pain. Expecting that paralysis would lead to numbness, I was not prepared for the unremitting toothache-type pain my damaged nerves sent through my entire body. Nor did I ever imagine that those same nerves could turn the well-intentioned touches of staff and family into sources of even greater pain. Such simple actions as a back rub by my mother and the frequent attempts of nurses to reposition my body to prevent bedsores could become extremely painful situations.
And then I developed life-threatening pneumonia. Every hour, I was taken off the respirator for a minute or two and a strawlike device was inserted into my trach hole to suction out the liquids that had accumulated in my lungs. Even worse, every couple of hours, my nurses would disconnect the respirator tube, suction my lungs and then unlock a cap that prevented the mucus in my nasal cavities from leaking into my lungs. Immediately, a torrent of green thick liquid would gush forth and the nurses would try to capture it, with suctioning tools and plenty of tissue.
As awful as the constant pain and the inability to move were, the intense fear of drowning from mucus that seemed to never stop flowing was terrifying beyond comprehension. For the nearly two months I was on the respirator, these procedures never allowed me to sleep more than 40 minutes at a time.
On Sunday, March 18, a priest came in to my room, donned his vestments and gave me general absolution, confirming dramatically my growing fear that I might not survive.
A muscle moves
But then, unpredictably and slowly, I began to improve.
In early April, a doctor checking me over exclaimed: “Ralph, you are smiling!” This was huge. A part of my body had actually moved! Over the next several weeks, there were more improvements. By the end of April, I could move a muscle or two in my right leg, lifting it several inches into the air, something I would do whenever someone new entered the room.
At the same time, my breathing capacity started to climb and my doctors decided to start weaning me off the respirator. After being dependent physically and psychologically on the respirator for so long, that process was not easy. The first day I started at five minutes, and each successive day tried to double the length of time I breathed without help from the machine. When the nurses disconnected me and put a cork in the trach hole created for the respirator, it allowed me to speak for the first time. My first words were “Thank you!” followed by a short speech about how grateful I was to be alive.
Over the next few weeks my recovery accelerated: Arm and leg muscles immobilized and contracted for months came alive — somewhat painfully. Retracing the physical development trajectory of an infant, I sat up, kneeled and crawled, and then stood up.
That last action was probably the most painful because my feet had not borne the weight of my body in a very long time. And because I had been prone and motionless for many weeks, my blood circulation was exceptionally poor and the blood would settle in my feet, making the pressure on them even more excruciating. (To this day, no matter how much tennis I play, the circulation in my feet is still not quite right.)
By May 22, more than three months after I’d gone into the hospital, I was able to leave its intensive care unit and settle into a regular hospital room for what ended up being a final six weeks at St. Mary’s. Therapists manipulated and stretched each muscle group repeatedly. And soon I became as adept as a 3-year-old at playing with building blocks and other games that developed my fine motor skills.
On June 12, with the help of leg braces and my hands tightly gripping parallel bars, I took my first six steps, while loudly humming the theme song from “Rocky.”
And then finally, on July 6, I was able to leave the hospital. It had been nearly five months. I thanked the nurses, doctors and medical technicians who had saved my life. I told them I would always remember them. The doctors gave me the sobering news that my case had been the most serious they had ever handled where the patient did not die.
Almost exactly a year after my tracheostomy, I began to fulfill my pledge never to forget what my doctors and nurses had done. At a fundraising event with hundreds of friends, we set up the first Guillain-Barré Syndrome Foundation. Our principal goals were to provide support to GBS patients and their families and to better educate the public and the medical community about this mysterious condition. Even now, a lot of doctors and hospitals still do not recognize GBS quickly enough or know how to treat it.
We merged with another newly formed GBS foundation a year later, and that merged group, now called the GBS/CIDP Foundation International, has built a membership of 35,000 former patients, established 185 chapters in 45 countries and funds both research and advocacy.
On Nov. 4 in Washington, we celebrated the foundation’s 35th anniversary. My own personal anniversary is coming up in February. It will be 37 years since I came down with GBS. It took me nearly two years to fully recover — and I still feel incredibly lucky.
Over the past 35 years, Neas has been the chief executive of several national civil rights and health-care organizations.