Chapter 6. Please Do Not Leave the Chair in the Middle of the Room

Glioblastology, the Book

Thursday is chapter release day at Glioblastology, and chapter six begins the second part of the book, “Encounters.” Originally the second of a three-part book: Part 1. Inside My Head; Part 2. Encounters; and Part 3. Death and Dying. The snag is that I didn’t end up dying, so I suppose the completed project will have to stretch into a fourth part: Recurrence. The regular posts I’ve kept through 2024 will comprise the bulk of that material.

At any rate, I’ve kept my original introduction to this section, leading into the chapter. Chapter 6 begins with my transition to the inpatient rehab hospital, where I’d relearn to walk, dress, feed, and bathe myself. I was in a locked brain trauma unit, and psychologically, I’ll never be completely discharged from that space.

Thank you to all the paid subscribers who have expressed their support for my work through their subscriptions. I deeply appreciate the validation of the value of my writing. I don’t want payment to be a barrier to reading, so please drop me a note if you’d like a complimentary subscription. Onto the second part of the book and Chapter 6—this one has a couple of my favorite one-liners in the entire book.

xx. <3 -a.

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Encounters

The clinical encounter happens in many settings, from meeting specialists in oncology office visits to rehabilitative therapists for physical and occupational therapy whose goals are to restore the ability to perform activities of daily living. In the second part of this book, I narrate the experiences that transition my care from inpatient to ambulatory while still undergoing active treatment. These vignettes advance my story while recalling settings that are familiar to readers who have navigated cancer care and general readers whose loved ones have done so. Here, I highlight the complexities of the American healthcare system.

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“Please Do Not Leave the Chair in the Center of the Room”

Whitney sat on the large windowsill of the sixth-floor inpatient room, facing Northwest to watch the famed Goodyear blimp circle fifteen hundred feet above The Indianapolis Motor Speedway. It was Sunday, May 29, 2016. The first day that I allowed the blinds to be opened and flood the room with natural light.

The sky was clear and pale blue, with thin clouds streaking the horizon. The hundredth running of the Indianapolis 500 was underway, and Whitney enjoyed a clear view of the Speedway, a two-and-a-half-mile oval, in the distance, some three and a half miles away as the crow flies. I was recovered from surgery in the sense that, medically, I was to be discharged, but functionally, the journey only began.

A hospital staff physical therapist evaluated my status in the general ward after surgery. She placed my left arm in a sling, scooted me to the edge of the bed, and she swung my legs forward to touch my feet to the ground. I close my eyes now, and I see her clog-like, non-slip shoes that are ubiquitous on the feet of inpatient practitioners. She placed her right foot to the outside edge of my left foot and her left foot beside my right. She stood in front of me, while I sat with my feet forward and her legs on either side of mine, she clasped the gait belt beneath my sling, across my chest, and with her right foot providing the backstop for my left and the rubber grips on my floppy left sock giving a little more traction, she grabbed the belt, pulled hard, and stood me up. There I stood, my left arm in a sling, nowhere near the balance or strength for her to release the gait belt. The hem of my blue hospital gown stopped below the knee, with my hairy legs and yellow socks planted to the floor. My left foot wedged against her right and significantly pronated, or turned inward, flattening my arches. I was flat-footed. I stood like a lumbering oaf, or Frankenstein’s monster, my short hair matted, a large c-shaped incision crossed my head, dotted with staples, my left arm pulled tightly to my chest, and my stick legs stretched from beneath the gown toward my flat feet. I was already heavy with water retention and weight from the glucocorticoid steroids, a tool in the box of neurologists and other clinicians dealing with trauma to the brain, as common as a hammer.

Decadron is like duct tape for the neuro oncologist.

The physical therapist pivoted my body to shuffle-step my large frame two or three shuffles counterclockwise and let me down into a chair beside the bed. I grinned with accomplishment. With help, I was able to transfer out of my bed and into a chair. Noticing such improvement in mobility from the ICU only three days before affirmed my choice in the operating room that quality of life today quieted concerns about an uncertain future—at least for now. It was time to begin the work: the work of recovery, the work of rehab, and the work of discernment to set myself on the path of doing something with this “unique personal experience.”

The therapist returned another day to transfer me into a wheelchair and transport me to the therapy gym, where accomplishment teetered on despair. It is commonplace to hear stories about people overcoming the odds, and hearing those stories becomes more common when you’re the one whose odds need overcoming. The typical talking points are about breakthrough new drugs or a friend’s aunt who was given six months to live and just celebrated her 50^th birthday. But plenty of stories about achieving milestones and victories are weaved into the illness narrative: “I kicked cancer’s ass!” exclaim many “survivors.” In the brain tumor community, “warrior” is the preferred honorific. “You’re such an inspiration” is a refrain.

The truth is, I am not sure that you ever really think much about overcoming the odds when going through the process. Admittedly, when prompted with a pointed question, it is easy enough for someone living with advanced disease to intellectually parse out some of these issues and say things like, “I am a statistic of one,” or even, “I don’t listen to the statistics.” But I find those replies are set within a broader reflective framework. The day-in, day-out grind of illness is a far cry from reflecting on what odds you’ll overcome—or won’t.

The goals of recovery and rehabilitation are important, as we’ll see in this chapter and the next. And putting in the hard work to meet those goals requires focused and determined effort. I do not want to be falsely modest. There is no doubt that living past my third year of survivorship [eighth year now], with the four-year post-diagnosis date on the horizon, is a test of will and a challenge to what my life has been, is, and will be about, but this idea that moment-by-moment consideration of “the odds” and how you may beat them, is not consistent with my experience. I worked hard, sure, but grand aspirations never motivated my therapy any more than modest goals to make incremental progress.

The day that the physical therapist transported me to the therapy gym to begin the arduous road of recovery, I simply did not question whether this was a good use of my time, whether I’d recover the ability to walk, or whether I’d “beat the odds” for a full recovery, whatever that would be. Instead, like an alarm going off in the morning, my experience with rehab was: this is my job. I looked toward the uncertain future with hope and optimism because I unreflectively trusted the process, and I saw my part to play not as one of grand inspiration but something more modest, holding up my end of the deal, maybe.

The therapist wheeled my chair to one side of the waist-high parallel bars on the far side of the therapy gym. She loosened and removed my sling and positioned my chair facing the bars. She entered the bars from the other side, and she met me face-forward, between the bars, to secure the gait belt. The metal wheelchair has large flat paddles that fold downward to place the person’s feet who is using the chair. She set my feet on the floor, folded up the paddles, each would swing in opposite directions around the sides of the chair to clear a path for my exit, and she again positioned her feet on either side of mine as tension points to prepare my weak body to stand.

She hoisted me to my feet. I instinctively grabbed the parallel bars with a body tremor like you may grip a railing in front of you after a pranking friend sneaks up to give you a jolt while you’re looking out over a tall balcony. She unfolded the plan: I would take steps forward while shimmying my hands along the parallel bars on either side of my body, and she would stand behind me with one hand on the gait belt and the other nudging along the wheelchair so that I could immediately drop to my seat if needed.

A straightforward plan.

Few things exploit your vulnerability like the total inability to perform the most basic of tasks, tasks so basic that they no longer require thought to perform. The memory of walking no longer matches the performance.

Standing between those bars, tremoring hands on either side, all of my weight shifted onto my strong right leg. I lift my left leg to step, and my shaky leg raises at the hip. My knee through the bottom of my foot sways untethered like the string on a floating balloon. It cannot be held steadily in place. The signals firing from my parietal lobe are interrupted to coordinate my quadricep and hamstring muscles in a choreographed dance. Instead, though I know that I am telling my body to walk, I know that I am taking a step. Instead, my left leg raises, then my foot drops to slap the ground, and my knee shoots backward and locks. This is called hyperextension. It’s painful, like I may pop my kneecap right off!

I take a normal step with my functional right leg.

I raise my left leg.

Slap.

Hyperextend.

Right Step.

Left leg.

Slap.

Hyperextend.

And so on for a fifteen-minute therapy treatment. By the end, I am exhausted, and my left knee is placed in a large metal brace to limit its movement and prevent hyperextension.

Recovering from surgery will not require simply rebuilding muscle or resting my body. It is not a physical impairment. My disability is neurological. The body is fine, but the brain is broken.

The treatment requires that new neural pathways be connected through my brain to detour the seven-centimeter surgical cavity remaining after the removal of my tumor. We never think to consider the elegant neurological functions that carry on our daily living with little attention. We simply think and perform. We are aware of own limits, but these limits are learned through years, decades, a life of experience. A life with an invisible body that responds to our thinking without interruption.

I now confront an ill body presenting itself to me as a threat. It is not simply that I cannot walk, or shave, or dress myself, or type, play the guitar, or cook—things that are learned through skill and practice. Instead, it is that a storehouse of functional skills in my brain are secluded and cut off from their muscular and tactile counterparts because the wires connecting them are severed. And so, I must do the work of recovery.

June 2, 2016, one week following awake brain surgery, I was discharged from the hospital where my surgery was performed, and I was transported by ambulance to the locked brain trauma unit of a rehabilitation hospital.