In the afternoons the therapists took me outside to teach me how to cross a street. I flunked. I would just strike out off the curb, forgetting to look both ways. I said “Damn” or “Shit.” They said, “Think.”
“Think before you walk,” they harped. “Learn to recognize danger and risk.”
“I am thinking,” I said.
I told them I knew all about danger and risk and that I had fought a war. They countered by telling me the only battle I had to fight was concentrating on walking and being safe.
In my final week of inpatient therapy, the therapists all talked with me about my progress in various areas of therapy. It was clear that I had indeed made progress, especially with gait training and some aspects of cognition, mostly with the ability to focus on my immediate surroundings and to assess environmental risks. I was much better at things like crossing the road and planning my day and participating in complex tasks, but the deficits from my stroke would need continued outpatient therapy. Each therapist laid out a plan for continuing therapy. Balance and gait training remained high on the list, as did cognitive therapy for my brain.
Before my discharge, I had to pass a written and simulator driver test. That was tough. The reaction time of my right side had been significantly impaired. My cognitive processing speed and reading speed were also markedly affected. I got two practice sessions with the simulator and with a sample written test. I would get only one chance at the real test. I barely passed with minimum scores, but I did pass. I would be legal to drive—impaired, yet legal.
Beyond the big test of driving, I took practical tests of my ability to function independently at home with activities of daily living (ADLs). The mock kitchen I saw the first day came into play. I had to cook a grilled cheese sandwich while an occupational therapist watched and scored my performance. I burned the sandwich and the pan because I was not paying attention. She would recommend in my final summary that I not be allowed to cook alone in the kitchen and that when I did cook, Collin had to monitor me.
The last of the ADL tests was in the area of bathroom and dressing skills. Tying my shoes was challenging to the point of frustrating because my fingers would simply not do the complex trickery of knot tying. The solution: stretch shoe laces or slip-on shoes. Making the bed was a breeze. Putting on my shirt required extra gymnastics; my right arm was still painful and without a functional range of motion. I had to sit on the edge of the bed to put on my jeans; otherwise I fell over when putting my foot into a pant leg. Toileting was a pain. Showering was dangerous. I recognized that and so had Collin. I had seen plenty of senior patients in the ER who had fallen in the shower and broken a hip. The shower in my hospital bedroom had more bars than a county jail. When showering, I held on with one hand while leaning against the sides for balance. I didn’t dare close my eyes to the beads of water when I faced the shower, because I would immediately become ataxic and fall. To wash my chest and face, I learned to sit on the shower chair, face the faucet, then soap and rinse. On my final test, a therapist named Rachael came to my room and watched me put on my white athletic socks and take them off. She hovered as I put my feet into my pant legs while sitting on the edge of the bed. I dressed myself with aplomb and flair just to show off.
“What do you do for the shower?” she asked, looking straight at me, clipboard in hand.
“I hold the bars and sit on the shower chair and have my wife standing nearby. I take my time and don’t rush. There is a big risk of falling,” I pointed out. I sounded as if I were giving answers for a medical board exam. I hit each of the safety points right on target.
“Okay, so let’s see you do it,” she said with her almost-pushy therapist voice.
“But I already took my shower this morning,” I said.
“And I need to see you take one before you leave. It’s a matter of safety.”
“You mean now?”
“Yes. I need you to show me how you manage in the shower.”
I had experienced far worse things than showering in front of a therapist, gender embarrassment aside; but to me, it was demeaning and yet another reminder of how much a stroke had changed my life, how it had destroyed my self-esteem and self-control until I was reduced to a soldier with elastic shoelaces needing to demonstrate that I had enough smarts and balance to stand in a shower without falling on my ass. Dignity in hand, or perhaps in the toilet, I undressed in front of the therapist and then stepped into the shower. I sat on the gray plastic chair and soaped myself as my therapist made notes about the whole ordeal.
Passing these tests meant I could function at home within certain parameters of safety and wisdom. There would be the usual assistive devices: jar openers, cane, shower chairs, and a temporary driver’s license, renewable only at the discretion of my doctors. I would have to adopt a new paradigm of functionality and daily living, one that would always reflect the pure and unassailable fact that I was a stroke patient and would remain one forever. And that fixed, clinical reality was a hammer that struck against the image of how I imagined my life proceeding.
I didn’t make the functional gains I had expected of inpatient therapy. I was not cured. I had made clinical progress and it was visible and meaningful, but it also established that my recovery still remained a work in progress. Hospital-based therapy had propelled improvements in my physical deficits; equally important, however, it forced me to confront those deficits and the real limitations they imposed. That was especially true of my cognitive and memory deficits. During my speech and cognitive therapy sessions, I had come to a realization that my patterns of thinking weren’t just impaired, they were broken, and no amount of inpatient therapy crammed into four short weeks was going to repair the damage.
That was my greatest lesson and my greatest disappointment, the double-edged sword of inpatient therapy; it made me clinically and emotionally aware of exactly who I had become. And that was the person who in a few short days would go home from St. Luke’s not as the imagined patient with his doctor skills fully intact and his mind sharpened, but as the real person whose fears had become concrete. I would not emerge from therapy with all the recovery that I had dreamed possible, yet I was not a therapeutic failure. I was simply and profoundly a stroke survivor.
In June, seven weeks after I left St. Luke’s, the Army medical corps invited me to Fort Knox for a medical review board. Up to that point I had been classified as non-deployable and given a chance at recovery with outpatient and inpatient rehabilitation. The clinical summaries from my doctors and neuropsychologists at the University Hospital in Iowa City and St. Luke’s all gave no firm date or prognosis for my likely return to military duty or emergency medicine: they simply stated that I did not, at the time of my evaluations, have the capacity to practice medicine or deploy as a soldier. Colonel Smith, at Rock Island, had discussed his summary with me before he sent it on to Fort Knox. As a friend and colleague, he struggled with his recommendation for non-deployment status. His final decision reflected Army medical standards and regulations. I agreed with it. I would have made the same decision.
At Fort Knox, in the shadow of the gold repository, my medical review board proceeded with a series of physical examinations and a review of my therapeutic progress. A young nurse who had done a tour in Iraq in one of the Army hospitals, helped me get to the exam rooms and made sure we checked off each box on a two-page checklist. She had just been promoted to captain and told me she wanted to make a career of the Army. As she walked me to the different stations for X-rays and lab and an EKG, she asked me about my tours. We had served in Iraq during the same months. Her combat experience gave her insight and empathy that encouraged me to feel at ease.
She reminded me of the nurses on the Globemaster medevac flight, the way they would comfort their patients to help them endure the stress of a medevac. At one point she took my arm and helped me balance, and when she touched me I sensed that she was also comforting me. The exams, the X-rays, and the standard medical questions to that point had al
l been so formal and procedural; not that the doctors or medical personnel were aloof or uncaring—they were exactly the opposite—but there was a certain fatalistic undercurrent in proceeding through a board review. By the end of the day, a medical officer would sign a form stating that I was no longer deployable and that I met the criteria for a medical discharge. Nothing personal, nothing random, nothing unexpected. The mechanics of the process gave me a hollow twinge of hopelessness. When the nurse held my arm, her touch was a lifeline.
The review board physicians met with me individually throughout the morning. They extended their gratitude for my tours of duty and my service and addressed each of their concerns with me. In the afternoon, the board conferred together; then the ranking officer met with me to review their findings. Physically, I failed Army standards. I could not run or sprint or manage a weapon to protect myself or a patient. My right arm and leg were weak. My right arm muscles had become so atrophied that one of the doctors told me I should not expect to use that arm again. Cognitively, the Army retested me to make sure they had an accurate and up-to-date assessment of any residual cognitive deficits. They found several: reading, memory, focus, executive functioning, threat assessment, and the management of critical information. The psychologist summarized their findings. He told me I did not have the cognitive capacity to accurately assess and use complex clinical data and on that basis, I was a risk to myself and to patients. I could no longer be deployed or function as a military physician.
In the last ten minutes with the psychologist, he reiterated the board’s appreciation for my service and then indicated that I would be discharged from the Army with a medical retirement. He walked me out of his office to a waiting room where I was to wait for an administrative officer to help me with all the necessary details for a medical discharge. I thanked him for his time. He gracefully said, “No, thank you.” And with that final courteous gesture, my career as a military medical officer and flight surgeon in the United States Army ended.
I sat in the waiting room, eyes roving about. I felt like I had felt so many times in doctors’ offices after my stroke. The substance of all that had happened that day carried a substantial weight and I was weary. I could never go back to the Army, never go back to medicine, and never back to the person I had become over the arc of so many years. The Army would move on without me. The nurse who helped me in the morning was now helping another soldier; the doctors who had reviewed my case had closed my file and moved on to the next case. And I thought that if there ever was a time when I had felt abandoned—like I was the only person alive in the universe—it was there in that lobby, waiting for my final discharge paperwork.
—
By July 2008 it had been a year since my stroke. In the beginning, I had decided that stroke therapy would not extend much beyond eight to ten weeks, an idea for which I had no clinical foundation. A year later I wondered if therapy might never end. It was different from what I had expected or hoped for. I puzzled over the pace of recovery, angry at times, perplexed at others. I took walks and sat at coffee shops, thinking of all that had transpired in the past year. I wasn’t looking to fix blame. I just thought therapy would have gone faster and I would have returned to medicine and the Army. That was a topic that Cher and I discussed: the nature of recovery, its speed, and the ongoing need for further therapy.
In August and September, Cher and Peggy began preparing me for an outpatient transition to the VA hospital. As soon as my Army discharge became effective, I would no longer be on active duty, and therefore no longer eligible for continued therapy under the management of the Army Wounded Warrior team at Rock Island and their contract at the University Hospital. I really didn’t want to transfer my care to the VA, but my outpatient therapy at the University Hospital had run its course, and the next natural step involved the Veterans Administration Hospital in Iowa City. Cher encouraged me to keep an open mind and to use my military leadership to an advantage.
“Use your Army skills,” she said. “View the change as any change in the battlefield. You told me how your training taught you to adapt and overcome. It’s time to use that training.”
She was right. Stroke therapy was all about adapting to change, and after a year of such adapting, my progress had become more dependent on my participation and less dependent on any particular therapist or program. Cher offered to make the needed calls and introductions to the staff at the VA. I agreed and the plan was set into motion.
In our few remaining sessions before my transfer, Cher let me talk about anything I wanted. I led the discussion and essentially the therapy. It was a twist. I felt like I was a doctor again, like I was counseling some patient facing a life-altering diagnosis. I started by asking her a question.
“Did you ever see that movie The Elephant Man?” I asked her.
“The one with Anthony Hopkins as a doctor, in black-and-white?”
“Yes, that’s the one. It was modeled after a real patient named John Merrick at the London Hospital in the late 1800s. A doctor named Treves rescued the elephant man from a London freak show. Merrick wore that cloth hood on his head to hide his deformities, and he dragged his leg and slurred his speech.”
“Where are you going with this,” Cher asked, a bit intrigued.
“I remember two scenes. The elephant man tripped over a little girl and knocked her down. A crowd of people thought he tried to hurt her, so they chased him to a dead-end street and were going to beat him. They tore his hood off and Merrick shouted: ‘I…am not…an…animal.’ The crowd finally left him alone.”
“Do you relate to him?” Cher asked me.
“Yes, I do. Not to his awful condition and his disfigurement, but to his awareness that he wasn’t an animal to be beaten into submission. Not that therapy does that, but sometimes I feel like an animal beaten by a stroke, and then I have to remind myself that I am not. Then I center myself and keep going in therapy.”
“Excellent observation.” Cher had a pleased look and slight smile, as if to convey she was proud of me. “It’s a sign of your ability to think in the abstract. What’s the other scene?”
“Toward the end of the movie, Merrick is having tea in Dr. Treves’s home and he asks a question: ‘Can you cure me?’ Treves answers, ‘No, John, I can’t cure you.’ And Merrick replies, ‘I thought not.’ ”
I told Cher how the scene lingered there with the emotional weight of a man coming to a final understanding of his own mortality and destiny.
“That scene is me,” I said to Cher. “It is where I am at right now in my life and my therapy. So I’m asking you the same question. Can you cure me?”
I had seen Cher in therapy for the better part of a year. She had forged a clinical bond that allowed me to reveal the hardest insights and deepest fears about myself and my stroke, and especially about my future. It was probably a bond that few therapists ever make with their patients. I was grateful for how much she had pushed me into discovering who I had become and, in many ways, into discovering the resilience that defined my life. I had seen her become emotional a few times during our sessions, to the point where her tears would well up and she would grab a tissue and sometimes offer one to me. The story of The Elephant Man moved us both. She, like Dr. Treves, paused in silence before she answered me.
“No, Jon, I can’t cure you. I never could.” And at that, a few tears fell and she held a tissue to her eyes.
“I thought not,” I replied quietly, my own tears welling up as we sat in silence.
—
I saw Cher once more in therapy. I had made her a present at home, a collage from a drawing of a medevac chopper and one of my battle patches and the insignia from the Army Medical Corps. I gave it to her at the start of the session. She jokingly said, “So therapy has been like a battle?”
“Kinda,” I replied. “No, actually, I wanted you to have the patch because it signifies the unit I went to war with. And I want you to know that you are the kind of therapist I would trust in combat. So
it’s kind of your combat patch, if you will.”
She thanked me and we discussed what it meant to wear a combat patch. It was more than the unit emblem sewn onto a uniform, and even more than the sign of serving in combat. It was a symbol of identity so closely held among soldiers that it bound them together in the mutual pride and gratitude of having served and survived together. And she said she was humbled by it and would keep it on her desk.
We talked a bit more about my gains in therapy and then we switched to talking about the idea of a clinical plateau. Some of my doctors had suggested that I had reached a one-year plateau in recovery and might not experience further gains—not that therapeutic gains would be impossible, but that efforts at some point could become counterproductive. I had partially bought into that line of thinking, yet had experienced several plateaus in my therapy and was able to work past them to gain more function. The Army doctors on the review board told me that the deficits remaining at the one-year point were likely to remain and that the therapeutic goal would shift from gaining more function to adapting to residual deficits. Dr. Leslie, Peggy, and Cher had all discussed the issue with me, but we all agreed that the clinical notion of a therapeutic plateau was not a law of therapy but something observed in many patients. I usually countered that I wasn’t “many patients” and then we discussed the role that resilience and personal will played in recovery. Everybody involved in my care, including me, had seen patients who defied clinical expectations, ones who pushed beyond the practical limits of therapy. I believed I might be one of those patients, but I didn’t have the expertise in stroke therapy to validate that belief. I wanted to believe that I could surpass and keep surpassing plateaus, but I wasn’t sure if they were hard rules of therapy or merely clinical constructs. I would have to find the answer in the coming months and years.
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