Patience

I stopped keeping a journal after I left the Valley of the Sun outpatient rehabilitation program at the end of October. My correspondence via e-mail with friends became the best way to think out loud about the rehabilitation process and how my perspective on this whole experience was being transformed.

October 25: Day 161
To Mark Winograd

I am walking longer distances now with a set of articulated AFOs; shorter distances require no braces but longer walking time to get to my destination. The alternate-day Prednisone is down to a 15 mg. dosage level.

My feet continue to feel “hot” most of the time, especially after walking for some distance. From my shins down, there is always a tightness and a feeling of muscle contraction. The therapists have been working diligently on retraining my back and pelvic muscles to walk and sit with good posture for the long run, rather than the round-shouldered way that I did before. Back pain is there every day, and sometimes I have to make a real effort not to give in to it.

When I am fatigued, I feel it in the tips of my fingers and in my face. The “tight mask” sensation of lips, nose, and forehead stiffening is a good cue for me to sit or lie down and rest.

My weight is back to 180 after falling to 145 at VSRH.

My sense is that the recovery marked by dramatic moments of standing, walking, with less and less assistance recedes in importance to the more subtle changes of less stiffness, fewer abnormal sensations, and more proprioception.

What are the next steps? What should I expect?

October 25: Day 161
From Mark Winograd  

You’re getting better. You will probably never get back to a four-minute mile, and your golf game may lose a stroke or two. But your overall functioning will continue to get better, I believe. The next thing to look for? The next thing that will happen, that’s the next thing to look for. Sartre: “We can’t recreate the past and we can’t predict the future, so...."

November 12: Day 179
To Sara McCowen, Virginia Commonwealth University

In talking with the physicians and the staff at the hospital, it is becoming clear, finally filtering through my defense mechanisms, that my prognosis was pretty thin for a long time, and terms like ‘miraculous’ are not hyperbole if you could see me today.

You know, lying in the hospital bed, I really didn’t think that I was going to see a lot of people ever again. It wasn’t so much dying, but that my ability to ever walk or leave Phoenix again would be over. Those weren’t very good days, despite everyone’s reports that I was cheery and optimistic when talking on the phone. Did I ever leak any bleak thoughts to you? Or was it ever "Tom the optimist" and seeing this illness and disability as just another problem to be solved, challenge to be met?

November 25: Day 192
To Richard Morrissey, Long Island Jewish Medical Center

Happy Thanksgiving to you and to Sue and to Christopher. This Thanksgiving we have a lot to be grateful for. It’s now been over 190 days since this all started. I climbed upstairs over the weekend and discovered in our closet the three suits that I took with me to Maryland in May. They were out of the travel bag but still on a hanger—jacket on top of shirt on top of slacks—just as I packed them on May 20th to return home. I started to weep as the length and depth of this illness was brought home once again.

December 11: Day 208
To Jane Halonen, Alverno College

I’m plugging away at editing the book I started dictating in the hospital. That’s a mixed chore, because it is accomplishing something that I’m excited about doing, but at the same time puts me in poignant contact with how bad things were this summer. I completed a passage yesterday in which the physiatrist had me image myself in a wheelchair, at best, by next summer. All of the invasive procedures for bowel care and then having a yeast infection that needed nurses’ attention four times a day in ways that weren’t very relaxing to me―God, this was an awful experience.

You did realize that “Tommy Chipper” was an alien being with the best damn intellectualization defense mechanisms as energy shield, didn’t you, when you talked to me at night on the phone?

Pat and I went to her holiday gathering last week and danced one dance and her whole crew got all misty and warm on her and me. The president in his brief welcome said “thanks” to those who were at last year’s gathering when they had 100 students and to all those for whom this is the first holiday party and they have 800 students now, and especially we should give thanks to have Pat and Tom here with us tonight.... What a sweetie!

Pat is doing well. We got our tree early and put it in the living room to smell the scent of pine for awhile. We’ll decorate it this weekend and feel merry. Maybe even drink some cognac and get lusty and lascivious on the carpet. We spend a lot of time now just hanging out, going to the mall or to Barnes and Noble to drink coffee. I asked her last night if I was any fun to be with any more and she slapped me on the side of the head and said I was more fun than when I was working. Hmmm.

December 28: Day 225
To Jane Halonen, Alverno College

I went to commencement, dressed in academic regalia, and celebrated that event. Three days after the one in May, my legs weakened and the feet began the abnormal sensations of demyelinization. Between the two graduations was 220 days—a reasonable facsimile of an academic year—and the professor went to school in ways that I never would have imagined.

Our president spotted me when he arrived. When this first began, he would call my voice mail and leave encouraging messages for me every week, even when he and his wife were in California on their annual vacation. I stuck out my hand to greet him, and he walked right through it and hugged me hard, then launched into a heartfelt homily about “You never know...make each day count...you are a source of inspiration to all of us...I am so happy that you are here....” to all the gathered faculty in our robes. There wasn’t a dry eye in the house. After an hour on stage, we recessed up the middle aisle. Allan and Ramsey marched before me to make sure I didn’t fall down on the way in. Allan and Clay Dix lent me their shoulders on the way out—academic quarter horses—and we marched up the long and steeply sloped aisle and out the door.

February 18: Day 277
To Mark Winograd  

I drove the van last weekend and had no adverse reactions from a short, local trip. Depressing the accelerator and shifting to the brake posed no problems. Twisting to see behind me was done easily as well.

My feet below the ankles are “hot” and “tingling” more often than not. They tire when I walk longer distances, so I sit and rest for a bit. They sometimes seem to “go to sleep.”

I cannot jump more than several inches off the ground, but I can walk on my toes and my heels with no difficulty. Walking up stairs is not hard without holding onto a rail and then ascending step over step; coming down stairs is awkward and painful to my knees.

When very fatigued, I feel stiffness in my lips, nose, and face, but my speech has not been affected in a very long time.

I’m reading Joseph Heller’s “No Laughing Matter,” about his bout with GBS in 1982. He had exactly the same types and magnitude of paralysis, but with two more cranial nerves implicated. He couldn’t swallow and needed a nasogastric feeding tube. He made no mention of ANY medical treatment, just close observation in an intensive- care unit at Mt. Sinai and then prolonged physical therapy at the Rusk Rehabilitation Institute.

It’s been nine months since I first met Messieurs Guillain and Barré. In his book Heller describes Mario Puzo’s reaction after hearing the name of the syndrome and seeing Joe in the hospital for the first time—“God it must be bad. They had to name it after TWO people.”

March 24: Day 311
To Sara McCowen, Virginia Commonwealth University

I went to the neurologist yesterday. The last eighteen days or so have been troubling. I spent too long one day on campus...my legs and torso and face shut down and started to go into a freeze. The next day and weekend I could barely get out of bed, with generalized pain and weakness. I e-mailed Mark, and he was back in touch immediately until I saw him yesterday.

After a very thorough examination of reflexes, motor responses, sensation, strength and endurance tests, he was very assured and happy with my progress since our last appointment in November. He wants to see me again in June. With three data points, he’ll be able to give me a pretty good prognosis for long-term healing, especially below my ankles.

He admonished me that my life will never be the same, because of the severity and magnitude of the nerve damage and consequent muscle impairment. Ordinary tasks —pulling weeds in the garden, scouring a bathtub—are potentially hazardous to my health. He had some dour comments about his two partners and their collective experience with patients. I am clearly in the miraculous category in speed and amount of recovery. Walking ten steps, saying three sentences, and being toilet-trained are the typical outcomes for many neurological diagnoses.

It is still not fully loaded into my consciousness that I could have died less than a year ago, that I could have been paralyzed for the rest of my life about six months ago, and that I may never be the same again.

May 21: Day 369
To Mark Winograd

It’s been one year since we first met, early that morning at Thunderbird Samaritan. I went back there today to the intensive care unit to say thanks to those wonderful women who took care of me when I was in such bad shape.

I went to spring ASU West commencement last Friday, and it brought back memories of last year’s ceremony and then losing my legs that same weekend.

Tomorrow morning I play golf again with my ASU West summer golf league; I shot a thirteen over par for eighteen holes last week to tune up the memory traces.

On June 2, I will return to the classroom for the first time.... 

Looking back I feel very fortunate that you and I matched up that morning. I gave you some gray hairs last summer...perhaps a patient not as famous as Joe Heller, but hopefully as interesting a case and as appreciative as a person can be to have had you as my physician.

June 2: Day 381
To “Teaching of Psychology” Colleagues

Just wanted to drop y’all a note and share some good news. I returned to teaching this morning for the first time since my first encounter with Messieurs Guillain et Barré, 380 days ago. It is a summer-school eight-week seminar on Multicultural Autobiographies, and I had twenty eager students for the three-hour, twice-weekly meeting.

What a difference a year makes. . .blessings on all of you who wrapped prayers, hearts, and heads around me during this ordeal. Pat and I are looking forward to San Francisco and continue to celebrate “the year after.”  

Sunday, June 21: Day 400
To Myself

Father’s Day, 1998. Matt worked all day at the restaurant. Beth was in Oregon on internship with a newspaper. They both called and wished me well. Maureen had a quiet dinner with Pat and me. I can still remember how bad I felt and how unfatherlike I was last year.

After thirty-nine years of playing golf, I had my first hole-in-one last week, playing with my ASU West pals.

Jonathan Larson posed a good question in his gritty, Pulitzer Prize-winning play, Rent:

How do you measure a year?

His answer was even better.

525,600 minutes...no day but today.

I hope I can keep remembering these days.

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