In the spring of 1975 I was doing my last clinical affiliation before becoming a certified Physical Therapist, in a clinic called Uncas-on-Thames Hospital, a one-time tuberculosis sanitarium that had been transformed by the State of Connecticut into a small cancer treatment center. As a choice of learning facility, it was one of the least popular; the opportunities for rehab being sparse, the therapy primarily centered on pain control. I chose it because it was my last; I was tired and it was close to home. In terms of workload, it delivered on its lack of promise. I spent a lot of time applying hot packs and giving massages.
Although the facility was small, the staff was top-notch, from Al, the orderly who transported patients to and from radiation with a new joke every day, to Dr. Joe O’Keefe, the physiatrist who did daily rounds to ensure the physical quality of life remaining was all that it could be.
One day I was assigned a new patient, Tom, a man in his late 30s with metastatic lung cancer. My job was to put moist heat packs to his back twice a day to try to ease his pain. The intake report described lesions in his ribs, spine, and pelvis and left femur. He had plenty of reason to be in pain and even though hot packs are pretty much a joke as far as an effective pain reliever for that kind of pain, he always thanked me for bringing them. One day I offered to bring them more often, but he asked me for something else.
“I want to walk to the bathroom” he said.
“You’re on strict bed rest,” I told him, “I think it would increase your pain if you tried that”. He looked me in the eye, and in a soft but firm voice he said “I know where I’m at, but using the bedpan is already painful and I just want to be able to go to the bathroom like a man”. His voice broke on this last word.
Dr. O’Keefe had shared Tom’s latest x-rays that morning. The bones lit up with white spots like Christmas lights, one rib already eaten clear through. The mass in his T-12 vertebra occupied almost the whole bone.
“I’m not sure you’d be strong enough,” I said, silently meaning NO WAY IN HELL.
“Isn’t that what physical therapy is for?” he asked. “Please, this is important to me”. I offered to pass his request on to the doctors, and suggested we might start with some bed exercise.
I found Dr. O’Keefe in his office, sitting on the handspun cushion he always carried chair to chair. I liked that about him. It made him seem more vulnerable and less intimidating that other doctors I’d dealt with to that point. Plus, he was kind. I told him of Tom’s request and he said “Wow, he’d be at great risk for fractures; you saw those bones. The cancer’s made Swiss cheese of them”.
I asked if he could be the one to tell Tom. I didn’t have the heart for it. “Sure,” he said.
Later in the day he asked me to walk with him. On the way he collected the charge nurse and we entered Tom’s room where the doctor explained gently but clearly the risks of Tom’s request.
“The tumors have eaten away at your bones,” he said. “You already have a fracture in one of your ribs. We’re not sure how your leg would react to putting weight on it, and even if the bones don’t break, the pain may be severe. Worst of all, your thoracic vertebra is thin as an eggshell and could collapse at any time. If that were to happen, you’d become paralyzed from the waist down.”
“I’m willing to take those chances, as crazy as it sounds,” Tom said. “I may be dying but I want to use the bathroom. It’s a matter of dignity and something I need to at least try. Will you help me”?
Dr. O’Keefe looked at us each one at a time. “Are you willing to try this, Pat”?
“I guess we could arrange the med schedule around the therapy visits”, Lisa offered uncertainly.
I looked at Tom and there was only one answer. “We’ll take it a step at a time”, I said.
Falling back on my recent studies I created a plan, starting with gentle leg exercises in bed as preparation for standing. We’d see what he could tolerate. Immediately, Tom changed the plan. “Forget the exercises. Either my legs will hold me or they won’t”.
I taught him to log roll and to push up to sitting using the bed controls to raise himself so as to minimize any twist on the joints. For a few days it was all he could do to sit on the side of the bed for a while. Every day as he sat, he looked at the bathroom door, ten feet away but seemingly miles.
About 4 days in, he declared himself ready to try standing. I brought in a walker and raised his bed to waist height so that he could just slide into a standing position without having to push himself up. I couldn’t use a safety belt; there would be too much pressure on his back and ribs should I need to use it, so I just wrapped my right arm around his thin frame and held him close against my side. As he began to move forward onto the walker I could feel the moment his weight shifted from the support of the bed onto his thin legs, the critical point when they would hold him or not. Lisa stood nearby at the ready. His legs trembled but held. He was taller than I realized, a different man once upright.
Sweat poured off him, dripping to the floor below as he stood, breathing in short gasps, staring as always toward the bathroom door. He gently shifted his weight from side to side, and still his legs held.
“Are you OK?” I asked.
“Help me sit” he said, and I eased him back to the bed. The nurse stepped in with a shot of morphine and I watched a bit of the strain ease from his face.
In the next days he stood twice, three times, and took a few steps. Each time he returned to bed he was drenched with sweat, ready for his meds. When Tom was out of bed my senses seemed to heighten. My hands felt every wobble and shift, my eyes scanned for paleness, and my hearing was focused on the rhythm of his breath, as often I held my own. Every moment I was aware of the reserves needed for the trip back to the bed, so near yet now so far. I knew each of his weak points, had memorized the map of his bones. Lisa was never far away, watchful too, on the ready.
Some days Tom just sent me away without getting up. Those were the bad days, the ones where he gave in, gave out, but never gave up. “Come back tomorrow”, he’d say, thick tongued with eyes that barely focused, and I knew the pain was stronger than desire on those days. To be honest, I needed those rests, too.
COM-PASSION: WITH- SUFFERING
My pain was different and far less, but there none the less. The stress of the risk we took, the guilt that lay dormant but ready should he get hurt, the nearness of death for my patient, my friend, my hero. The bathroom door became my goal as well. I knew exactly how many steps from the bed, how many breaths it would take to reach it. As always, I held him close to my side and we moved as one.
Finally about 2 weeks in he chose to go for it. It was a good day, good being relative to the bad, and good meaning the best he was likely to have left. He knew the tide would soon be turning.
“You OK?” Each time I asked he reassured me and took another step. We made it into the bathroom, pivoted as if we were one, and I helped him onto the john. He sat sweating and panting, but smiling.
“Look at you,” I said.
“How are you doing?’
“Could you step out and close the door?” he asked. In the hall Lisa let out a breath and the sight of her blurred as my eyes filled with tears.
He made it back to bed in record time, riding the high of his victory. “We did it,” he sighed, his grimace approaching a smile. For the first time though, his eyes didn’t search out the bathroom door, but looked instead to the hallway, willing the space to be filled by the nurse with the needle.
“Thanks,” he whispered.
Tom made it to the bathroom two more times in the next 3 days. Then, on the 4th day, in morning report the news came that his vertebra had collapsed during the night as he rolled over in bed. It was frightening how close we had been. As expected the paralysis was complete. Breaking the chasm of silence someone commented that perhaps he’d feel less pain. It was a long reach for the merest spark of comfort, and no response was made.
I didn’t want to see him, didn’t know how to face him, didn’t know how I could endure that truth, guilty that I could walk and live. But there was no question of not seeing him. When I walked quietly to his bed, he was awake, looking out the window.
“Hey there,” I said. “I heard the news. I’m so sorry”.
His eyes filled with tears. “But we made it,” he answered. “I’m so grateful for what you did for me. You listened and helped me even though we knew it could come to this.”
I mumbled some inane response, wanting to run as far and as fast as I could. As if reading my thoughts he told me not to bother coming back. “I don’t want the hot packs anymore.” I understood. Just as it was difficult for me to see him in bed, it was far worse for him to see me standing. Our connection was severed with his spine.
Not a week later Tom died of pneumonia, a complication brought about by inactivity and diminished lung capacity they said. I thought it had more to do with his having reached his goal and lost it so soon. I left Uncas soon afterward. I graduated, passed my board exams and became a real therapist.
But it was because of Tom that I became a good one.