Wheelchair Alarm

Figure out the relationship dynamics.

I required surgery to remove a fairly large tumor from my brain—from the right medial parietal lobe, to be exact. The tumor? A seven-centimeter IDH mutated grade four astrocytoma.

Brain cancer.

Drag.

The surgery was successful, debulking some 96% of the tumor, but the region of the tumor involved the part of the brain responsible for motor coordination for the opposite side of my body. After surgery, I was temporarily paralyzed on the left side. I spent a month in the hospital, followed by months of outpatient rehab to force my brain to form new pathways to return to fulfilling familiar tasks like walking, dressing, bathing, and holding our eighth-month-old.

That’s what you need to know now to make sense of what I’ll say later.

The Guard or the Guarded

The Stanford Prison Experiment stood out to me whenever I first read about it. I assume that many of us kids with curiosity and little athletic ability ended up in classes about psychology and philosophy. It was probably in the former that I first read about the experiment and in the latter that I studied its ethics.

The experiment recruited Stanford students to participate in a two-week study in the basement of the Stanford psychology building. Participants were split into groups of guards and groups of prisoners.

Spoiler: Things got wild. The guards began psychologically abusing the prisoners, and the study was shut down after six days. One academic debate surrounds the reliability of any findings that could be drawn, not least of which is whether the study lead instructed the guards to behave in certain ways or suggested to them as much. That would, of course, undermine any meaningful conclusions about their behavior.

I was never much of a fan of the appeal to intuition in philosophy. I’ve always found the idea that some things seem to be the case, so we have justification for believing that thing is the case, most likely specious. However, the experimental design and its tenuous and preliminary outcome—that if put in positions of authority, people will tend toward excessive use of that authority—seems right to me. The whole “authority corrupts; absolute authority corrupts absolutely” thing. I suppose I should be ready and willing to give up that aphorism when presented with competing data or evidence.

At any rate, even if the belief that placing people in positions of power necessarily leads to abuse of that power is specious, as a heuristic, it may be worthwhile to consider how we may behave if thrust into unfamiliar roles in unfamiliar circumstances—either as the guard or as the guarded.

The Brain Trauma Unit

When you experience paralysis on one side of your body, you are quickly labeled as a fall risk, which includes a bed alarm and, if applicable, a wheelchair alarm. Attempt to transfer out of or into either, and the alarm will sound, alerting the nearby care team. I qualified for this added safety measure. And more, the extent of damage to my brain—controlled damage, as it were—also required additional measures. With neuro-trauma, we sought physical, occupational, and speech therapists with specialization in rehabbing head injury and other brain trauma.

The inpatient brain trauma unit is a locked floor, meaning that patients cannot exit, and visitors may not enter without being let out or in by the staff. Your rehab schedule is written on the whiteboard each morning. You are wheeled down to the cafeteria at lunchtime and usually rolled back to your room between therapy sessions. If you participated in rehab, did your in-room exercises, and worked toward your goals, with greater mobility and performance of tasks, you may be moved up or down for levels of assistance or independence. Given my significant impairment upon admission, I was assigned maximum assistance for everything, from dressing to toileting. Add the bed and wheelchair alarms, the daily schedule, and the camera in my room pointed toward my bed. Well, that old Stanford experiment came to mind.

It doesn’t take too many shits with someone else in the bathroom until you learn to de-personalize. I’m sure that de-personalization is a two-way street. It’s one of the reasons I tell newly diagnosed patients to hang up pictures of their friends and family by their hospital beds so they can make human connections with their care team.

I don’t want to speak in hyperbole here. I am ultimately appreciative of that month in the brain trauma unit. I was admitted in a wheelchair, with my left hand taped to the wheelchair armrest so it didn’t drop into the spokes of the wheel, and I was discharged with a walker. That’s a huge improvement. The therapists were awesome, and I accomplished a ton of rehab.

And.

And, and and.

That place was starting to feel like a prison, and it was working on me in some kind of way. I went from a fully independent 34-year-old guy in the world to a brain trauma patient on a locked floor under surveillance who couldn’t even shower alone. Other patients with cognitive impairment also had behavioral health concerns; some patients screamed, and some physically pushed their nurses; you get it. Tough environment for all.

I did maintain myself through that inpatient stay, and I can look back on those weeks with lessons and even some humor. When I was in group therapy working on the feels with a floor full of brain trauma patients—you can imagine that scene; one woman had fallen down her stairs and was found down after an unknown period of time. She was sure she was in the wrong place and didn’t understand why she was there. Could she please just call her doctor and get this worked out?

When I shared about my brain surgery, the woman exclaimed, pointing across the chair circle: “Now that’s a brain injury!”

I did maintain a handle on myself through that complete reversal of my world, and I learned how to navigate the relationship dynamics of that space. I knew which nurses to obey, who to avoid, and who to clown around with. This is a pro-tip from eight and a half years of brain cancer survivorship. Figuring out the relationship dynamics with those assigned to your care is the first and most important thing you can do in healthcare encounters. If you’re getting stuck with the IV or the one doing the sticking, we’re all humans doing human things, and there is power in reminding others and ourselves of that basic fact.

I learned other things, too. I learned to find time to savor mundane tasks like checking boxes on my lunch menu the night before. To occupy my mind, I’d imagine that I was tasting each option in a sort of lunchtime dress rehearsal. After discharge, I cooked the hospital breakfast for myself at home most mornings for a while until I observed that behavior may not be altogether healthy.

When I earned the safety status of “modified independence,” I was allowed access to the main corridor with my wheelchair. I rolled myself down to the end of the floor and stared out the window, daydreaming. I figured out that environment and its people.

This has all been going somewhere.

Sort Out the Values

I have to be honest, and I am being honest: I do fear the potential for dark days ahead. I suppose saying these things out loud, indeed, writing them down for others to read, because writing is the ultimate bullshit detector, is helping me raise certain questions I have to sort out with my own values, and doing that may help me feel more prepared, even if all I’m preparing for is to get the kids to the bus stop at 8:23 am tomorrow.