Myelitis patient: “We Made A Miracle!”

by Marjorie Holcombe

Every year approximately 600,000 Americans become paralyzed. Many of them have the capacity to recover, but few understand clearly how to go about it. This is the story of how I recovered as a paraplegic, and it is an odyssey that many other paraplegics can follow, if they are really committed.

In early April of 2007, only days after completing six weeks of radiation and chemotherapy, I drove to town for my last doctor appointment, feeling relieved that the ordeal was over and imagining a healthy future. But by night my legs were tingling and weak, and by morning I lay in shock, imprisoned in a body that was numb.

The next six despairing weeks I spent in hospitals and at a rehabilitation clinic lying in a bed, propped up in a wheel chair, or brought to the rehab gym for practical exercises (like moving from bed to wheelchair) that I could not do. Finally I was sent home classified as a paraplegic, complete with home hospital bed, wheelchair and caretaker. I was unable to sit, stand, eat by myself or speak without slurring. The diagnosis: Myelitis. Lesions pocked my spine from one end to the other with inflammation of the spine.

The doctors offered little hope. “You might be the one in 13 thousand who walks again,” one said, “but I doubt it.” Another suggested, “Pay attention to the quality of your life. You probably don’t have long to live.” They were only trying to get me to face reality as they saw it: in their experience, apparently, patients in my condition rarely recovered.

Alone on one of many despairing nights, lying in the dark hospital room, my mind returned to memories of Dr. Ming Qing Zhu, an acupuncturist specializing in neurological spinal damage who years earlier had cured me within six visits of a chronic sciatic condition that in ten years other health practitioners had failed to heal. I vowed that once I was transferred to the rehab center, I would seek him out.

Soon after arriving at the center, I plotted the first of many secret visits to Dr. Zhu’s clinic – secret because the regulations at rehab required patients to remain on the premises. On the day of my initial appointment for my acupuncture, David, my partner of 20 years, with the help of two friends, shoved me into our Volvo for the hour-long trip. As none of us had experience in handling paraplegics, it must have looked like a circus act as they tried to squeeze me into the car.

Upon arrival at his acupuncture office, Dr. Zhu placed needles in my scalp and legs, “to activate the flow of energy from brain to body,” he explained. After the acupuncture treatment, Dr. Zhu and his colleague, Dr. Moyee Siu, pulled me to my feet via a harness and began coaxing my body to move in ways that it hadn’t been able to before. While I was a long way from getting up and walking on my own two feet out his office door, my recovery had begun; Dr. Zhu had convinced me, more than any conventional professional had been able to do, that I had the potential to heal. He announced that I might be able to walk within six months. Ecstatic, I clung to this only ticket to a future. I would do whatever he said.

“You must exercise all day.”

“All day?” I repeated incredulously.

“All day! At least six to eight hours a day. Ten best.”

He looked into my face, and gently spoke in simple English, “A year. No problem. Live rest of life walking.”

Upon being transferred home, I asked friends and family to come to our house and help. For six weeks guests came and went. One after another tried with great good will to follow the exercise regime prescribed by the assigned visiting therapist. I lay on the large exercise table that David had built for me, my head on three pillows, staring anxiously at my useless muscles, as I tried to will them to wake up while my friends stretched and moved my legs and arms. But their therapy was often inexact and inefficient. They were quickly exhausted by my constant neediness for personal care, and each soon left to return home back to the east. For three weeks I vomited every time I was placed in an upright position for trunk exercises; I still could not hold a fork nor speak without slurring or skipping words. My hair was sparse; my body weak. I was a shock to my visitors and a shock to myself.

As my last guest — my dear college roommate of 40 years earlier and a professor of philosophy — prepared to return to New York, I panicked. How could I recover with no one to help me? I could not even lift my legs off the bed. Back at her home, with tears in her eyes, she begged a Chinese scholar with whom she was co-editing a book on Neo-Confucianism to go out to California for several weeks to help her friend. Being of good physical condition and of good heart, he agreed.

And so I met Sean Cheng. Against medical expectations, under Sean’s direction I learned to walk again in six months.

I had the qualities necessary for a good patient. Not only was I was also willing to use my savings to support Sean’s help, but I was completely committed to recovery. I had heard stories of others who had regained their ability to walk and I was determined to be one of them.

What makes for a good therapist? While licensed physical therapists are essential to one’s recovery, most paraplegics lack the money to hire a full-time professional and must depend for the bulk of their healing process on the kindness of a committed partner, cousin or friend. In my case, I had Sean. Sean had never before practiced physical therapy, but he had the instincts to become a successful physical trainer and the insight to create and carry out a successful program.

Sean was perceptive and accurate in his assessment of my condition. As a retired engineer, he approached my disabilities analytically. He quickly realized that we were in a race against atrophying muscles, and that our efforts to re-create the neural pathways to those muscles had to be aggressive enough to counter the nerves’ lethargy. What he offered me was a ticket on an express train.

Our program used a multi-treatment approach. Besides completing six hours of intensive exercise every day at home – three in the morning and three after lunch – we went to a twice-weekly physical therapy session given by excellent therapists at the outpatient rehab clinic, and we continued to go to Dr. Zhu’s, took advantage of chiropractic care and massage, and followed a healthy diet. I even bought an expensive magnetic resonance mat and modem, equipment that is used in Europe, to help nurture my repairing nerves. If I had not had a foot wound, I would have added aquatic therapy to my regime.

There was a time appropriate for each discipline. Each approach offered us new exercises and new ideas for help. At the beginning, neurological acupuncture was crucial. Later, Sean urged me to go as an outpatient to the rehab clinic, which had useful equipment. At my first rehab session, I was put into a hoist, my legs dangling in walking position. Clearly, a lift for my morale.

The rehab therapists gave ‘homework assignments,’ exercises that we assiduously followed as presented or modified. We went to my chiropractor who, besides making spinal adjustments, tested each muscle for its strength, giving us helpful exercises to develop weaker muscles.

Sean was able to accurately assess each ‘next step.’ If I was learning to take steps forward fairly well, he might suggest my learning to step sideways or backwards. Under his guidance, each new exercise evolved naturally from the last, with no traumatic strain. Every new activity had to be safe for me; we did not take risks that might later have taken me months to recover from. We were almost always in agreement about what exercises to include, or exclude, in our daily six-hour program. Sometimes it was I who spontaneously added a new element to our regime. He listened to me and I to him.

Both of us were intensely committed to the recovery process. Our entire routine was spent in focused productivity. Sean maintained a challenging pace and rarely slacked off. I rarely resisted. The process was never comfortable for me. My body always felt too tight or my nerves too active; my legs alternated from feeling as if they were burning to feeling like two dead wooden sticks. Often my torso felt as if it was encased in a tight immovable girdle. I can truthfully say that not one day did I feel “normal” nor physically happy. Even so, moving was far more exciting than lying in bed.

Given the repetitive and often seemingly boring nature of our work (just how much fun can it have been for Sean to plod behind me, protecting me from a fall as I labored to move forward in my walker – back and forth, back and forth), I admired Sean for his consistent and patient endurance.

A natural motivator, Sean kept the boredom at bay. He got excited about every tiny breakthrough in the healing process and made sure that I knew what each little achievement was. “Perfect! Yesterday you only walked across the balcony (or raised your leg or stood up) five times. Today it was seven!” He made sure to tell David of my daily improvement, so that David himself began to feel hope that I would recover. It was truly amazing to hear Sean’s excitement. His enthusiasm — “You’re number one!” he would say during our plodding exercises — banished the mild melancholic state I woke to each morning. When I had to stand in the standing frame for 20 minutes, a task that I met with boredom and frustration (at that time my legs hated bearing my weight), Sean appeared with interesting and inspiring readings.

He would read to me in his limited English with his mispronunciations, and I, a professor by vocation, would correct him. But his choice of readings was inspirational and unexpected, such as the blurb on a poster that hung in my art studio about “How To Be an Artist”. When he first arrived, he brought from the studio one of my watercolor paintings, saying, “This is great!” and my heart lifted a bit in reliving the joy of painting.

He never pushed me too hard, but let me set new heights as I felt ready to do so. He knew my limits and possibilities well. The point was that he fully immersed himself in my experience, making me feel that we both were successful together. We were as one in our endeavor, and he was enthusiastic about that too. One of his many aphorisms was “Enjoy the happiness in the struggling, not only waiting for or after success.”

And Sean was inventive. I live in the country an hour from town. Our balcony served as our gym. We did not have rehab equipment available to us, but Sean’s philosophy was, “Don’t wait. Innovate. Just do it, NOW!” We did not have time to wait for insurance approval. One day as I was practicing walking with canes, the equipment specialist called to say that the leg extensions ordered months ago for my wheelchair (that I no longer used) had arrived! Both David and Sean were constantly putting together or taking apart makeshift equipment for needed exercises. To help me learn to stand up from a sitting position, Sean, looking for the outcome of the exercise rather than the attractiveness of the equipment, took apart the $3,000 standing frame so that he could stand directly in front of me as I lifted off from the angled seat. Early on, David had hammered together from scrap wood a “tilting board” that more or less mimicked the one that had been used in the hospital to prepare me for standing in an upright position. We made our own equipment.

When I needed parallel bars David brought home from the dump a metal table top, and he and Sean sawed it up to duplicate parallel bars. Sean took apart the ‘raised-arm platform’ of a walker that we had recently purchased but no longer needed and inverted the platform so it became the “sand walker” that we used to practice walking on the beach.

When I was ready to practice climbing stairs, Sean tapped a newspaper around old telephone books to create the first step — three inches high. Later he hammered together pieces of wood to make four separate stepping blocks. One day he built handrails beside the studio steps so that, using the combination of the low wood stepping blocks, I could practice going up and down a mini-flight of stairs. To make the repetition of step climbing more interesting, he announced one day that four trips up and down the six steps equaled one flight of stairs and would win me a “star”. Of course I wanted to become a five-star winner, so I willingly climbed more steps. I was a college professor, yet these simple incentives always awakened in me the determination to make new efforts. Only someone who has undergone months of tedious rehabilitative exercise can appreciate this kind of inventiveness.

Sean made every day different: he always found a way to do something in a new way, a change from previous days. He was imaginative. I think we both appreciated each other’s adventurous intelligence. And intelligence was needed in keeping up the pace of recovery. That, and a sense of fun.

It wasn’t always fun. Following so intense a program was highly stressful, and occasionally each of us had to deal with our emotional baggage. But we were adult enough to work through the problems and to push on. “Just keep going” could have been our motto.

Sean was never critical. He saw all of my efforts for what they were: efforts. My caretaker told the rehab therapists who were awed by our progress, “Sean tells Marjorie what to do but she does it.” To quote Anatole France, “Nine-tenths of learning is encouragement.” Sean tried to open me to seeing myself in the wider world – to see that I was not so much an invalid as part of the adventure of life. He constantly and cheerfully quoted aphorisms and philosophical dictums. One of his favorites was the Chinese saying: “Read ten thousand books; walk ten thousand miles.” Surely we walked ten thousand steps together.

Of all the people who every year find themselves paraplegics, many of them, like me, never dreamed they would find themselves in such a state – one patient I met had become paralyzed as a result of a spider bite, another from an auto accident, a third from a stroke. But newly paralyzed patients shouldn’t wait to find “the cause,” but focus on the recovery. Such victims will speed their healing if they can find someone to help them start the demanding daily exercise program (guided by a professional physical therapist) as early in their recovery as possible, preferably when they are still in the hospital because one’s muscles atrophy very quickly. Helpers need to be cautioned, however, that muscles and tendons are very fragile, particularly in the weak state of a paralytic, and that great care must be taken that their body is handled exceedingly accurately, neither too loosely nor too abruptly. In my experience, Dr. Zhu’s intense acupuncture was absolutely necessary early in the recovery. Each day is crucial.

On November 29 Sean and I made a return visit to Dr. Zhu. I walked in awkwardly with two canes. They were ecstatic. Standing for photos I raised my canes in victory. We made a miracle!