Nothing Is Impossible (10 page)

We moved on to shoulders. I was already able to move them a little when I arrived at Kessler. Erica worked with me, both in the chair and on the mat table, by pushing my shoulders down and then applying resistance as I strained to lift them up again. The left side was decidedly weaker than the right, so she moved our sessions to the biofeedback department. I parked my chair in front of a computer screen; electrodes placed on the trapezius muscles of the shoulders provided a real-time readout in the form of a graph as I exercised. The right shoulder excursion was about 50 percent of normal, but the movement of the left peaked at a pitiful 10 to 15 percent. I told Erica that was unacceptable, which played right into her approach to my physical therapy: show a Type A personality a display of his achievement (or lack thereof) and you can harness his competitive nature to motivate improvement. The theory behind the motor deficit on the left side was that I had a case of Brown-Séquard syndrome, a common outcome of spinal cord injury, which causes greater functional recovery on one side of the body and greater
sensory recovery on the other. Erica and I had decided to ignore that diagnosis, just as I had decided to ignore the opinion of experts who declared that I would never regain any functional or sensory recovery whatsoever. During the ensuing months at Kessler I spent hours in front of that screen working on my left shoulder. By the time I was discharged in December the right was up to 60 percent of normal and its weaker brother had improved to 40 percent.

Considering that only a few individuals with injuries just centimeters below the brain stem live long enough to go to a rehab center, I’m extremely grateful that I ended up in the hands of Erica and Dr. Kirshblum. Instead of relegating me to the ranks of hopeless cases, they optimized my care, using me as a test case to see what a C-2 vent-dependent quadriplegic could accomplish. They continued to work on strength and mobility in my neck and shoulders, but soon added proactive therapies usually reserved for patients with lower-level injuries.

The first was functional electrical stimulation (FES). Its purpose is to prevent muscle atrophy and to maintain good circulation. In 1995 FES was still considered experimental, even though there was no danger to the patient and the benefits seemed to be more than obvious. The technology is simple: electrodes are placed on
targeted muscle groups with wires that connect to a box, about the size of a laptop, called the E-Stim. The therapist sets the electrical stimulation parameters based on the patient’s size and physical condition. The electrodes are rotated every session, just as an athlete rotates exercises in the gym. All that was available at Kessler was a pair of pants with the electrodes sewn in, so I was only able to stim my legs once or twice a week. It was fairly primitive by contemporary standards, but it was a good start.

The next proactive therapies introduced in rehab were a stationary FES bicycle and a tilt table. For the FES bike, I wore a pair of shorts and individual electrodes were placed on the quadriceps and hamstrings. The current from the E-Stim machine caused those muscles to fire, enabling the legs to push the pedals of the bike. In the early sessions I could only reach the desired goal of 45 rpm for a few minutes. Eventually I was able to keep up that pace for thirty minutes nonstop, which gave me the added benefit of a good cardiovascular workout; usually my heart rate would increase by as much as forty beats per minute.

The tilt table is for weight bearing and maintaining bone density. Patients are transferred from their wheelchairs onto a special table while it is in a horizontal position and secured with straps around the knees, waist,
and chest. Then the table is manually cranked up according to the patient’s level of tolerance. (It requires many attempts to achieve the full upright position because the transition from lying flat to standing causes a rapid drop in blood pressure.) Putting a C-2 quadriplegic on a tilt table with the goal of having his entire weight supported by his legs and feet is extremely proactive.

The tilt table experience gave me a tremendous psychological boost. It meant that Erica as a therapist and Kessler as an institution believed it was worth preparing me for the possibility of walking again someday. After three weeks of trying, I was able to stand at 90 degrees. For the first time since my injury, I was six foot four again. Dana used to stand on the footrest of the table and lean against me with her head on my shoulder, just like the old days.

Unfortunately for most patients, the end of rehab means the end of therapy. Tilt tables, FES bikes, and E-Stim are all extremely expensive because the market for them is relatively small. Insurance companies won’t pay for the patient to use them at home and they usually won’t reimburse rehab facilities that would like to use them for outpatients. I was extremely fortunate to be able to purchase some of that equipment, and some of it was donated by the manufacturers. Even as I turned
my attention to directing (
In the Gloaming
, 1996–97), acting (
Rear Window
, 1998), writing (
Still Me
, 1997–98), and advocacy (endless), I was able to maintain a regimen of exercise at the same time.

Except for the movement of my neck and shoulders, which is entirely voluntary (because the enervation is above the level of my injury), any other movement has been involuntary, requiring mechanical or electrical assistance. That’s why the discovery that I could move my left index finger on command was such a momentous event.

In late November 2000 I traveled to New Orleans to give the keynote speech at the annual Symposium of Neuroscientists. Among those in attendance was Dr. John McDonald. At the time he had recently completed his postdoctoral studies in St. Louis with Dennis Choi, M.D., Ph.D., one of the world’s leading researchers and one of the nine members of the consortium funded by the Christopher Reeve Paralysis Foundation. His original plan after graduating from medical school was to become a neuroscientist specializing in strokes. Apparently my injury caused him to choose a different path. We had met in the spring of 1999, when I spoke at a fund-raiser for the Barnes Jewish Hospital in St. Louis. Although he was only thirty-four years old, slightly stocky, with a boyish face and a carefully coiffed hairstyle
reminiscent of early Robert Redford, it was immediately apparent that Dr. McDonald had acquired a vast knowledge of the spinal cord in a short period of time.

He came into the room set aside for me as I was preparing to join the neuroscientists at the obligatory cocktail party. We chatted for a few moments and then he asked me if there was anything new. I told him that I was doing pretty well, that I didn’t have any infections at the moment, and that I was breathing without the ventilator for longer periods of time. Then I told him there was one specific improvement that he might find interesting and showed him the voluntary movement of my finger.

I don’t think he would have been more astonished if I had just walked on water. It took him a moment to recover, but when he did he practically ordered me to perform the movement inside an MRI. The purpose would be to establish which part of my brain was sending signals down the cord, out into the peripheral nervous system and into a small subset of muscles in my left hand. Diana De Rosa, our coordinator of travel and logistics, reminded me that I was scheduled to appear at another fund-raiser in St. Louis on November 19. I was supposed to fly home the next morning, but there was no reason not to postpone the departure if the MRI at Washington University was available. Dr. McDonald said that it would
be, even if he had to drag another patient out of it by the heels.

And so began an extraordinary collaboration that continues to this day. I gave my speech on Sunday night and was over at the MRI facility by eleven o’clock on Monday. There I was introduced to Dr. Maurizio Corbetta, assistant professor of anatomy and neurology at Washington University, trained in Milan but establishing his career in the United States. A contemporary of John’s, he was already a recognized expert in MRI radiology at the time of our first meeting. After the introductions to his associates and staff, he pulled up a chair and told me what would happen in the MRI. First they would map my brain at rest; then they would ask me to move my tongue from side to side on command; finally I would see a flashing green light, the signal to move my finger as much as I could. He asked to see what that would look like, so I performed my “party trick” once again. As soon as he saw the finger move he hurried out of the room with his whole team in hot pursuit.

I found out later that Dr. Corbetta was so skeptical about voluntary movement that he hadn’t even bothered to turn on the MRI before I arrived. The instructions were actually a test to see whether it was worth the time and expense of firing up the equipment. Just as there was virtually no information in the
Spinal Cord
Manual
for patients with injuries above C-4, there was apparently no precedent for recovery of function five years after the initial trauma. The common wisdom was that whatever recovery was possible would occur within the first six months, although there were several isolated cases of limited additional recovery two years postinjury. Five years was simply out of the question.

The MRI session lasted a little more than three hours. At the time I thought my greatest accomplishment was that I didn’t have to be sedated. (In 1995 I made many trips down that long, claustrophobic tunnel; my greatest anxiety was air hunger, because the hose connecting me to the ventilator had to be lengthened by as much as fifteen feet. Usually I needed supplemental oxygen and tranquilizers.) The reason for the tongue movement was to map normal brain activity above the level of the injury, which could then be compared to the brain activity triggering motion far below it.

While we waited for the results, John and his assistant Linda Schultz came back to the hotel with me, Dolly, Diana, and our aide, Chris Fantini, for an early dinner. I thought I was done for the day, but John had other ideas. As I tipped back in my chair to relax, he came over and said, “Let’s see you move your other fingers.” I decided that my thumb might be the most likely candidate so I focused all my attention on it, trying to
make the same connection that I had established with my index finger. After a few moments of concentration I silently ordered my thumb to move. It did. First there was a flicker, and then with repetition the movement became increasingly obvious. John asked me to move the thumb and forefinger simultaneously. Both digits immediately did as they were told. (A quick thought flashed across my mind—was this happening because I had been an actor for twenty-eight years and now it was “showtime”?)

John asked me to move the other fingers of my left hand, first in order and then randomly in rapid succession. I have no idea how or why they all responded. But considering the fact that none of them (except the forefinger) had moved voluntarily in more than five years, they put on quite a show. Now that we were on a roll John asked me to move the fingers of my right hand. The result? Complete failure. Not one of them would budge. Feeling my frustration, he told me to forget about it and raise my whole hand instead. (Only John MacDonald would choose that moment to move on to a much more difficult task.) He supported my arm above the armrest of my chair and let the wrist relax with the fingers pointing downward. On his command I tried to lift my right hand, something I had never even considered attempting before that moment. I could feel my
whole arm tightening inside and a burning sensation from the shoulder down as I strained to make my hand move. My mind wandered back to my weight training for
Superman
, when I could bench-press more than my own weight. Now I was using the same amount of effort to pick up my wrist. How pathetic. I told myself that wasn’t fair—everything’s relative. Back to work. Nothing is impossible. No reason why my hand should come up, but no reason why it shouldn’t, either.

The others came over to cheer me on. Now I had an audience, which was probably just what I needed. I gave it everything I had. My fingers started twitching, which meant that signals from the brain were getting through. Then, in agonizing slow motion, my wrist started to move and the hand rose up. It stopped in the level position (which I thought was amazing) but the crowd wanted more. John and Linda encouraged me; Diana, Dolly, and Chris resorted to threats, the worst being no dinner and a labor strike, which would mean spending the night sleeping in my wheelchair. That did it. I was laughing and struggling at the same time, but I finally managed to bend my wrist and raise my right hand all the way up.

Then, as we were eating dinner and I was indulging in a celebratory glass of red wine, the phone rang. It was Dr. Corbetta reporting on the preliminary results
from the MRI: the electrical impulses commanding both the tongue movement and the finger movement came from the correct part of the motor cortex in the brain. This finding was also completely unexpected, because the conventional wisdom was that after a severe trauma to the central nervous system the brain would have to find alternate ways to communicate with the body below the level of injury. Many spinal cord patients have had the frustrating experience of wanting to move a leg, but getting shoulder movement instead. Often it takes months and even years of rehab to learn to compensate for the brain’s tendency to give inappropriate commands after injury. An appropriate cause-and-effect relationship between the motor cortex and a targeted movement was decidedly “out of the box.”

Because there had been no medical intervention, Dr. McDonald put forward the theory that the new movements were the result of regular physical exercise. Perhaps “activity-dependent training,” the official term for my workout regimen, had awakened dormant pathways in the spinal cord or caused some small amount of regeneration. We agreed to undertake an official study with a patient population of one. My job was to maintain and document regular exercise; his was to quantify and verify my progress using accepted scientific methods.

On December 10, John and Linda traveled to our home in Westchester County, north of New York City. The first order of business was a complete ASIA examination, conducted at my bedside. This is a test, devised by the American Spinal Cord Injury Association, used by physicians to assess sensation and motor function. The sensory testing is done with a Q-tip and a safety pin. The patient is asked to close his eyes and feel the soft brush of the Q-tip on his face. With that sensation established as 100 percent normal, the physician moves down the body and applies the same gentle touch at random. The patient is asked to describe exactly where the Q-tip is and give a percentage score in comparison to the sensation on his face. Each answer is graded from 0 to 5, with 5 representing full sensation and accuracy of location. The safety pin is applied in the same way, but the test is even more difficult because the examiner uses both the sharp and dull ends and the patient is asked to discern the difference.