The Samaritans

Sunday, May 18: Day 1

When I took an evening shower at the hotel, I felt like I was going to fall and grabbed onto the bar that lined the back wall. I didn’t feel dizzy and didn’t understand why I had this sensation. Kneeling next to the tub, I found no soapy residue that could have made it slippery. When I got into bed, the sheet felt over-starched and scratched my toes. I checked the skin on my feet. There were no cracks or coarse spots. I was puzzled but slept well, eager to deliver my speech the next day. The symptoms of my illness became evident for the first time. This was “Day 1.”

Monday, May 19: Day 2

I arrived at Prince George’s Community College for my National Science Foundation workshop with psychology faculty members and climbed the two, steep flights of stairs to the conference room area. My legs felt heavy and sluggish. It took an unusual effort to get to the top.

My speech was well received. In the evening, we all went to Annapolis for dinner. The smell of the salty air and the sounds of the water were refreshing. When we returned to the van, I heard a distinct “clop, clop, clop” sound on the cobblestone streets. My feet were slapping on the ground in a strange way when I walked.

Tuesday, May 20: Day 3

I forgot about the quirky symptoms during the workshop. I ran overtime, then left the conference in a flurry of final questions and appreciative comments. Going back down the flight of stairs, I felt as if I were going to tumble headlong into space. I didn’t know where my feet were landing as I put them down in front of me. I grasped the handrail firmly.

My well-planned return to Washington, D.C., included taking the southern Beltway in order to stop in Alexandria at Gadsby’s Tavern. I passed several Maryland exits with hospital markings and thought about stopping for an emergency room visit. My intuition was that something more serious than a flu or virus was working on me. Nevertheless, I decided not to stop at hospitals or taverns, but to continue on to National Airport. Six hours later, Pat met me in Phoenix with a wheelchair and we went directly to Thunderbird Samaritan Medical Center.

The attending physician examined me and Pat heard the full story for the first time while I told them about the tingling sensations in my feet, the increasing heaviness in my legs, and the feeling of falling down in the shower and on the stairs at the campus. The physician used the words—Guillain-Barré Syndrome—as she listed diagnoses and asked me more questions about possible food poisoning, my general physical health, and other symptoms. I was admitted just before midnight, forty-eight hours after my feet first tingled.

 Thursday, May 22: Day 5

One of the benefits of an academic community is the resourcefulness of colleagues.

They discovered Joel Steinberg’s “Guillain-Barré Syndrome. An Overview for the Layperson.”  He uses phrases like: “rare illness”; “weakness and paralysis”; “vary greatly in severity from the mildest case...to a devastating illness with almost complete paralysis that brings a patient close to death.” The causes of this syndrome are unknown. The effects were idiosyncratic. [If asked for a user name and password at the GBS Foundation page or other sites, press "escape"; this may allow you to enter. —Editor]

The information just washed over me. I still was not processing the details of neurological  systems, symptoms, treatment issues, or the course of the illness and its uncertain prognosis. Pat read all the materials, listened to every single word the physicians said, and watched me. Her denial systems were never as well developed as mine. 

Thursday, May 29: Day 12

Last week’s loss of the use of my legs didn’t register as “paralysis.” It was just “loss of strength” or “lack of coordination” or some other euphemism. Neither my defense mechanisms nor my muscles were working at all now. My eyes, nose, and lips began to tingle and had the same stiffness that surrounded my feet when all of this began. My colon and sphincter muscles were shutting down. I was getting worse. The illness was spreading. The medical literature talked about a ventilator to maintain the patient’s breathing. I would lose my voice when a tracheostomy tube was put in my throat.

Tonight was Matthew’s graduation from high school. I was so proud of my son and so disappointed that I wasn’t there to celebrate this night with him. How many more events of my family’s life would I celebrate?

Sunday, June 8, to Saturday, June 14: Day 22 to Day 28

The days blurred together for a second week.

On Monday, the plasmapheresis treatments began again, and the ninth, tenth, eleventh, and twelfth were completed by Thursday.

Before beginning the last treatment, I had an unexpected visit from a priest. I asked if he could come back in the afternoon because they were about to start. He said gently, but firmly, “They can wait for several minutes for us to talk.” Cyprian had a calm demeanor and a soft voice. I began to talk slowly, then with animation about my thirst for a renewed spirituality and the arid place in which I felt my present life. He placed his hands on my head and blessed me with a prayer of healing. I felt peaceful and scared to death. He left as quietly as he arrived, and the nurse practitioner returned for the final plasma exchange.

Matthew visited me at 6:00 a.m. on Friday morning. He had been up all night talking with a friend whose dad also had Guillain-Barré Syndrome and was not walking yet, two years after leaving the hospital. Matt told me that another high school friend’s dad had spent his final days in the hospital where I was being transferred, and he died there.

My spirits elevated with my completion of the plasma exchange program and my transfer to HealthSouth Valley of the Sun Rehabilitation Hospital. All of the literature that we read about Guillain-Barré Syndrome indicated that there was an acute period of 14 to 28 days, after which the patient and doctors would have better indications of the course of the illness. I had been hospitalized for 28 days when I left Thunderbird Samaritan Medical Center. I had completed the two treatment protocols reported in the literature and expected to get better, despite a setback after the initial intravenous immunoglobulin procedure. If there were more problems, Valley of the Sun was equipped to handle them with pulmonary specialists on twenty-four-hour call. If there were other medical emergencies, a trip back to Thunderbird Samaritan would take only ten minutes.

I kept thinking that I had turned the corner on this illness and things would get better. Linda Stryker would no longer have to visit me with her beautiful flowers to brighten my room and lift my spirits. She and Allan and Gebe would not have to censor their “business” topics lest I get overtaxed in conversations. Voice mails from campus could be less tentative in their personal messages and cards less imperative—Get Well Soon! Business as usual had to be just around the corner.

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