Expendable

The news of Teri Garr’s death came the day of my most recent appointment with my MS doctor. It teased open a dormant wound. If you choose to read on, and I hope you do, believe me when I say I know how lucky I am. I’ve lived with the nagging symptoms, the threat of darker days from loss of function, and the recommendation to conceal my disease from the moment I was diagnosed forty some years ago. But. I am still upright. Being just a few years older than I am, Ms. Garr’s death gobsmacked me. It reanimated the image of the Sword of Damocles oscillating over the bodies of those with chronic disease.

One of the first things the doctor who diagnosed my MS said was “Don’t tell anyone.” He also said “Not enough people die of MS. That’s why research is slow to happen.” It was 1979.

I wasn’t the sort of person to discuss my private matters with anyone but those closest to me. I heard him mumble something about insurance. At an age of naivety where I didn’t think about those things, his words disappeared in the miasma of my own shock. Of course I didn’t tell anyone.

Until. Through diet and exercise I lost about seventy pounds in six months. I kept fat intake to a minimum, never wondering how my body would react. The inside of my legs went numb. Fears based on my basic knowledge of my disease might become reality. I was quickly seen by a neurologist with whom I worked. He slammed me with high dose steroids, the drug of choice for “exacerbations” at the time. I took time off from work. I confided in one, and only one, colleague. My first day back at work, I insisted she watch me walk. “Can you tell? Does my walk look okay?” She said I looked fine.

Years later, I realized the doctor who diagnosed me and encouraged discretion with my secret had done me a favor in a way. Career wise, if I made an error, I did not want my disease to be used as an excuse or for blame. I did not want to be known as “the nurse with MS.” If I had ordinary blues, I didn’t want them to be categorized by my disease rather than the loss of my father, a broken heart, loss of a patient, challenges with my son. Except for occasional bouts of the rabid, burning and tingling of paresthesias, my life was just like anyone else’s.

An emergency CT scan of a patient with a stroke in progress exposed the subtle progression of my disease and foreshadowed my considering retirement. The nurse I was mentoring, and I gathered all the equipment. I jammed emergency drugs in my pocket. When I reached to pull the EKG module from the monitor box to put it in the portable machine, the adrenaline heightened the furor of my intentional tremors. I had to deep breathe, calm down, reach, and pray for my fingers to connect with the module. The stress of the situation outed me. Now there was evidence of my disease.

It took a while for me. I decided to retire over vacation. Two days into fourteen days off, I already dreaded going back to work. I never shed a tear about my decision, giving up a career in which I thrived and enjoyed learning, changing, and dealing with people. I was already a work-in-progress as a writer.

My anger and regret began when retirement showed me my first taste of expendability. At a time when everything I read said “Spend wisely in retirement, you don’t know how long you’ll live and need money,” my MS drug now would cost at least $7000 a year without commercial insurance. The “donut hole” was still a gaping, bottomless pit. I discussed this with my MS doctor.

“Well, we’ll just stop it.”

Wait. Didn’t you prescribe it because I needed it to prevent relapses and further damage to my good old myelin sheaths??

The first five years went “swimmingly.” I love that word, because swimming has been my salvation at a time when walking has become laborious.

I did well until I didn’t. Covid caused me to faint and hit my head. I developed benign, so they call it, vertigo. The stress of ordinary life, my husband’s health issues, awakened sensations I had forgotten. My hands felt puffy enough to explode, like they were packed with sand. My legs felt like they were receiving a continuous electric shock. My new MS doctor diagnosed footdrop. No wonder I kept tripping on the treadmill. My foot dragged. I started wearing an ankle brace, which helped my gait. Walking remained a labor of muscle and concentration. If I stepped just right, my gait steadied. If distracted and not focusing, my right leg bobbled. I watched myself walk into the gym in the glass windows, reminding myself to step “just so.”

I pursued activities to strengthen my legs. I started at three minutes on the stair stepper and worked up to twenty. I followed that with equal time on the treadmill. Leg lifts with five-pound weights. Band exercises to strengthen my ankles. And swimming. Blessed swimming. Days in the water to rest my weary legs.

At my six-month routine appointment with a new MS doctor, young enough to be my son, I teared up describing my perception of my situation. At seventy-three, my body felt like it was eroding, just like the cliffs on the coast that fall into the ocean after a deluge. “Yes, I am seventy-three,” I said, “but I work out six days a week, take classes, go to the museum….” I am not ready to stop. I didn’t say that. I didn’t have to.

If his response had been anything other than what it was, I might have accused him of discrimination or ageism.

He scooted his chair close and showed me a graphic chart of my blood’s autoimmune activity. “Ordinarily, at your age….”

There it was. The elephant in the room. My age. When does age justify not treating someone aspiring to the highest level of wellness they can achieve?

“…. I don’t consider this drug, but I can see how much pain you’re in because of your MS. I’m going to give you some information about a drug we can consider trying. It will not fix the symptoms you have from old damage. It does down shift the body’s activity that might cause more.”

I am not in real physical pain. I am in pain because I have no control, have no idea what the future holds, have so much left to do, and am not sure I can do anything to change things. The drug cost for one round of treatment is $48,000.

How does all this relate to Teri Garr? In an episode of Law and Order: SVU after her diagnosis, she inspired me. She showed the world what I, as a nurse, could not. Despite the disease, we continue to be who we are, to do our work, to do it well.  I mourn the world’s loss of this woman of talent, grace, and courage, as I mourn the cell-by-cell loss of my body’s function. She is gone. I am going. My reality. But I am still upright.