I have lived with MS for over half my life and consider myself blessed. I worked in Critical Care for over forty years, my disease not betraying me until the very end, when, as I prepped to transport a patient for an emergency CT scan, my intentional tremors, augmented by adrenalin, transformed my hand into a quaking disaster as I reached to move a monitoring module from the wall unit to a transport device. My vision is good after Lasik and cataract surgery. The competitive swimming I did for fifteen years has become my “go to” activity to soothe burning paresthesias and a progressive dysfunctional gait. The treadmill supports the impact cardio I need for endurance training and bone health. I’ve had three short works published this year with one longer work-in-progress. I share two cats with my partner of twenty-five years.
None of that prevents me from remembering the words spoken to me by an MD colleague when I told him of my diagnosis.
“Not enough people die of MS,” he said, using his typical sardonic delivery.
I didn’t get the warning behind the flippancy.
Now I am 74. I see a plethora of “ask your doctor about…” ads with drugs for cancer, Alzheimer’s, weight loss, oh my god, weight loss, bronchiectasis, myasthenia gravis, CKD, CA, innumerable acronyms, and, most amazing of all, to a nurse who lived and worked through the epidemic, a drug that will keep an AIDs patient HIV negative and prevent transmission through sex.
What the hell! Where is MS in this algorithm for life? Suddenly, I feel expendable.
Recently the FDA failed to approve a drug specifically designed for people with “my type” of MS. It’s called progressive or smoldering. I must admit smoldering sounds sexy, sexier that I’ve felt in a while.
Heads up people! Ain’t nothing sexy about it. Ten years ago, I remember charting on the computer. My right thumb and forefinger did what I expected them to do, but a hint of numbness demanded I focus on them to get the forefinger to the correct key, to keep my clumsy thumb from tripping up other fingers. That day I prayed to a higher power not to take away the function of my hands; by then I had written a novel and was striving for street credibility by publishing short stories. My prayer was ignored.
Around that time, I cared for a patient who was an orthopedic surgeon. We talked running. He asked why I limped. I confessed to falling a few times.
“Maybe it’s time to give up running outside,” he said.
The treadmill and a diagnosis of foot drop entered my life. I lost days of running awash in the golden aura of the sun, finding images in the clouds, waving back at people who waved at me as I ran my regular route, dreaming that my dad’s spirit watched from whatever unearthly plane he inhabited.
74. I want to do everything I can for as long as I can. My hands still type well, as if years of repetition wouldn’t let them forget which key is where. Although both hands and all my fingers are numb, I can type without watching the keyboard. My feet are numb, but they still step efficiently. Some days, the numbness extends to my knees and I joke, “I stagger like a drunk.” I’ve been told to never let the police test my sobriety by walking a straight line. Ha! It’s not funny. I turned down an invitation to a concert of a musician I saw decades ago, because I feared the challenge of walking in the venue amidst a sea of people. Still love you, Carlos Santana.
Am I expendable? Is that why there is nothing to help me maintain the level of wellness(yes, wellness!) I strive to maintain? Is slow death with MS less fatal than death from cancer, heart disease, or Alzheimer’s? Is slipping away inch by inch, day by day any less frightening or final?
In my hospital practice, we dialyzed people in their 80s, did cardiac interventions, performed hip replacements, placed them on ventilators, kept them in ICU for days. An article published in Sage Journals in 2023 shared results of an International Delphi Survey of health care providers. Of those who responded, most agreed MS treatment for older MS patients differed from that of younger, but they didn’t clearly define “older,” nor did they clarify differences in treatment. If there are that many of us, as indicated by the respondent’s patient population, why aren’t there more aggressive treatments for us? Why not more clinical trials?
In one week, I hit the gym, browsed at the library, attended a jazz concert, lunched with my stepdaughter and son-in-law, mounted a new mailbox with my son, and met with a group of fellow writers. This is the quality of life I want to maintain. It is non-negotiable.
I am not expendable.

I belong to a dedicated group of writers. Rather than read and critique, we meet and share goals, frustrations, work habits, what “haunts” us, what pushes us toward or away from the art of writing. At our last discussion, we counted our rejections of the past few weeks. Six for me, four for another skilled and well published author. Although I have developed thicker skin, it betrays me with its fragility again and again. Six rejections in two weeks. Am I worthy of calling myself a writer? This morning at 6 a.m., before I had my first sip of B-52 flavored coffee and don’t ask why it’s named that, I received an acceptance with editorial suggestions. Putting off experiencing the pain of cutting of those notorious “little darlings” is my usual strategy. Not this morning. Not for a story I’ve reincarnated several times over the course of six years. Bracing for impact, my head nearly exploded with hubris, my heart with exaltation, because the editorial comments told me whoever read this story “got it.” Got my message about sibling rivalry, about a girl on the cusp of her sexuality, about how a child finds her place in the world. “Wow,” I thought, “Wow, wow, wow.” An epiphany followed all those “wows.” When it comes to rejections, a lot depends on who reads the story. Through all the workshops this piece has survived, no one has ever stated so succinctly what it was about. Somehow this editorial staff read this story through my eyes. Did it happen because multiple revisions fostered clarity? Did the reader(s) connect to the trauma of coming of age in an imperfect, modern world? Or, were the stars finally in proper alignment for the piece? Regardless, my skin is a bit thicker, and I remind myself that readers, editors, and writers have one thing in common, we are fragile human beings, products of our experiences, which in turn, affects how we write, read, and judge what is written. Today, I am a writer.

The business model broke our medical system, which is now drowning in policies, procedures, and paperwork. Computers did nothing to streamline processes. Any nurse will tell you that. Medical specialization has reduced the patient to a slab of meat ready to be divided into parts.

From my experience as a patient in this system, I concluded my body is a jumble of shards, fragments of flesh and blood to be treated separately rather than as part of a whole being.

Why do I say this? Let me share.

I needed an ankle brace for the foot drop I developed from MS. The Amazon brace wore out in a few weeks, a few weeks of six days a week on the treadmill or stair stepper. Yes, I am active. The maker of the brace didn’t take into consideration that at times, thanks to my MS, my hands are numb and can’t lace the brace. Didn’t consider if I take the cushion out of my gym shoe to allow the brace into the shoe, the brace is so hard it leaves pressure marks on my foot. MS is a total body experience.

Then there is my heart, plagued by Sick Sinus Syndrome and occasional tachyarrhythmias, “fixed” by the placement of a pacemaker. Fine. Cool. I’ve learned to live with it. The problem is, who do I call for those days when I feel a bit breathless or a feel like someone has their hands around my chest and is squeezing it. Do I call the Electrophysiologist and have my pacemaker interrogated? Do I call my regular cardiologist to see if this is a woman’s version of chest pain? They’ve finally decided women feel chest pain a little bit differently than elephant-sitting-on-the-chest like the men. Or, should I call my MS doctor to see if this is just the proverbial “MS hug?”

When I have indigestion do I call my GI doctor or my cardiologist?

Muscle pain? Joint aches? Do I call an orthopedic specialist, a rheumatologist, a gerontologist?

When I have the blahs do I call a psychiatrist, my PCP, or my palm reader?

I am a total human being. My systems are joined. When will big business see that it’s profitable and better business to treat me as such. Get the super glue. Put me back together. I want one doctor to know all of ME.

I grew up a zebra in a community of horses. My mother protected me while giving me freedom to grow. I raced with other fillies and mares, colts and stallions, sped down a favorite hill until my legs hurt and my mane, soaked with sweat and dust, clumped in thick strings. I wandered in and out of the herd, but when Mother sensed peril, she pushed me to the periphery and insinuated herself between me and the threat she saw that I did not. I loved to splash in water. As I grew up and emulated the restrained demeanor of Mother, I approached the water, resisted the urge to prance and snort and play and saw my reflection in the pristine surface for the first time.   I didn’t look at all like my Mother. Her coat did not bear the stark stripes of black and white I saw snaking down my neck and around my body. She seemed encased in clots of mud brown. I asked her about this. “It is how I survive.” She showed me how to dip in the pond and roll in the dirt to cover my stripes. After my initial fear, I learned to love deep water. It lifted me and gave me a feeling of lightness I never felt on land. I learned to keep my muzzle angled to get enough air and see where I was going. The water slid over my body and teased places I didn’t know existed.

I did as Mother said and writhed in the dirt. Scratching my back in the dust and pebbles and dried grass felt good. I stood up and moseyed through the group. No one recognized me. I didn’t know which was worse: to be a stranger or to be the familiar who was different. With my stripes, I felt confident and secure. I knew who I was and where I was going and accepted my uniqueness. The others in the herd would learn. When the storm clouds gathered and unleashed a cataract of rain, I danced in the mud, raised my muzzle to the sky, and shook my head until black and white stripes peeked through the rivulets of muddy water. This is who I am. I am proud.

We are born layered with difference, not by choice, but by nature, for all to embrace. That is the beauty of the natural world.

 

“I can’t listen to this anymore,” I told my husband, “I’m going to bed.”

“Be in the Know” was touted on the nightly news as the ultimate local commentary on politics. Funny in a world where XX-chromosome-at-birth people contributed at least half the population, not one had a valid enough opinion to be included on the show.

“I thought we fought this fight decades ago,” I mumbled. Before I could stomp into the bedroom to escape the three pontificating men, I recognized the voice of a doctor with whom I worked. I paused to look. What I saw on the screen gut punched me. There Dr. Thompson stood, the same one who once threatened my license, his face slashed by a smarmy grin, his eyes glimmering with adoration, his hands patting the back of the candidate quite capable of destroying our country.  I shut out the droning analysis.

Ever patient, my husband heard this rant with escalating frequency as the election neared. The corners of his eyes crinkled as he tried to suppress a tolerant smile. He understood me. He didn’t understand what was at stake. The ten years between us created a generation gap, not just of social mores, but also of socio-gender experience. I went to bed feeling deflated.

The older I got, the more determined I became to not have spent time on this earth in vain. I compartmentalized my life. The baggage I carried, and I’ll get to that in a minute, engendered an energizing angst. With the stealth of a chameleon, I disguised my being. One persona existed as a wife and a retired, seasoned nurse. The other was a work in progress. Anger, passion, and a need to leave a legacy fueled my evolution as an activist.

Not one person, not even my best friend of fifty years, knew I spent $2000 on a Savage Arms Impulse Mountain Hunter 7mm Bolt Action Rifle. I stashed it in the attic garage. My husband could no longer navigate the flimsy pull-down stairs.  He and I kept our own bank accounts ever since he was fleeced by a hacker for a huge sum of money. Several days a week during his naptime, I’d drive to a gun range. The smell of cordite, propellant, heat against metal, tricked me into feeling powerful. The recoil reminded me of my age and fragility. My first day at the range left me black and blue. Inspired by the current buzz phrases, I persisted.

When I watched action-adventure movies with female protagonists, I’d rage at producers who cast young women with no biceps or delts. I did light weights three days a week to earn mine. Any moron knew the weapons in those movies were Styrofoam props, unless you were working with Alec Baldwin. I fashioned a special pad for the rifle to buffer the kickback. When no one was looking, I flexed my arms with pride and imagined myself a “mature” female action hero. No, I’d never be able to leap over fences or take stairs three at a time. I did have the strength and endurance to carry, and repeatedly shoot, a rifle.  Brace my body. Lift. Aim. Squeeze. Inhale the power. Repeat. I pictured myself riding the bullet just like Major T.J. “King” Kong rode the bomb in Dr. Strangelove. The bullet would cut through the air, hit flesh causing a moist thwap, and shower blood and bits of flesh on my face. In reality, the bullet piercing the black figure outlined on the target had to suffice.

Back at the house, I sat at the computer. My fingers played across the keyboard, a warmup before I put my thoughts into my latest letter-to-the-editor of the newspaper. About one out of every ten submissions made it into print. My knobby knuckles glared in the light from the over-the-desk lamp, just like mortality glared at me and laughed.

Before the screen saver came on, the blank screen reflected my long, thin face. Errant hairs from a waist length gray-blonde braid drifted around it. Sagging skin around my mouth carved a parenthesis. I forced a smile bordering on a grimace that bared my teeth. The front two had slipped back into the overlap that some master-of-torture orthodontist had corrected decades ago.

The screen saver popped up. My husband and I leaned into each other, smiling, against the backdrop of the Grand Canyon. It was a time before retirement, before Covid, before politics trumped the will of the American people. It was a beautiful picture that obscured the facts my face declared. Time was fleeting; life was short.

Seventy-three loomed a mere six months away. At the gym, I know I passed for a lot younger. I worked out harder and longer than most. I sweated more, stunk less, except when my fiber intake betrayed my body, and I farted on every step on the treadmill. I missed running outside. Walking out of the locker room was more dangerous than the streets. Passing a young person, eyes glued to the phone, was like meeting a drunk driver head on. I maneuvered to avoid a literal head-on collision. I thought about sticking my foot out to trip someone, but I resisted. Persist. Resist. It’s all the same fight. I did allow myself to shape my hand like a gun and shoot bullets from my index finger, blowing on the tip after firing as if it were smoking. On the upside, I never felt invisible because no one ever really looked at me. I put that sad assessment in a readily accessible place for future reference.

The team of young people who manned the front desk when I first joined the club aged and moved on to real careers. I learned a whole set of names as new replaced old.

New replacing old. The story of my life. Exclusion by the younger nurses and my own stubborn refusal to relinquish my standards of professional behavior, pushed me toward retirement. Yes, I do admit to some fault. That being said, old school is old school.

 

“I won’t start report until Melanie puts her phone away,” I told my head nurse. Melanie, an arrogant new hire, spent more money on her hair and nails in a week than I did in a lifetime. Her state-of-the-art phone provided her with continuous information, instant contact with her latest boyfriend who she damn near stalked, and faux affirmation. A call light could go off, and if Melanie was immersed in conversation with her love of the day, the patient could die before she went into the room.

My head nurse supported me, even announced phone restrictions at a staff meeting. Phones continued to vibrate and demand attention during report. I answered call lights for nurses shopping online, watching YouTube or TikTok, or booking flights for their next getaway. The phone warned of things to come.

I fought for respect throughout my career. I tried to be a change agent, a role model for nurse’s who still thought doctors walked on water, rather than slogging through shit like the rest of health care professionals.

Early in my career, I made a choice between accepting or challenging the status quo. Seems that war is fought on every plane, from the lowest to the highest. A surgeon, known to be one of the most clinically skilled in cancer surgery, answered my call and rushed into the unit to check the purulent drainage I noted in an incision. He pulled off the dressing with his bare hands, poked the circumference of the wound, and grimaced. He looked at me and shrugged.

“Culture it. Irrigate it. Redress it. I’ve got to get back to the OR.”

He scooted out of the room without washing his hands. I weighed turning a blind eye against the value of my current employment. I really did. I had grown up in a “Children should be seen and not heard” world. I had young men tell me I should tone myself down when I argued politics. I also had an imagination that envisioned a glowing trail of germs marking the door of the unit as the doctor left, the handles of the OR as he pushed his way into it, the virgin skin of his next patient as germs leaked out of his surgical gloves. I wrote a detailed, objective incident report.

I didn’t get fired, not even counseled. The rabid hospital rumor mill did recount the story of the same doctor and a nurse being caught in flagrante delicto in an x-ray reading room. That nurse got fired. The doctor remained untainted, untouchable. The curse of the XX chromosome, I called it, a condition that rendered one powerless and invisible.

With years of navigating the patriarchy of medicine under my belt, another incident paved the way for retirement and another kind of action. A doctor I’d worked with for years, Dr. Thompson, he who would trigger my call to arms, had week-end call. My patient required maximum life support, a ventilator, a potent IV infusion to maintain the blood pressure, heavy sedation. Dr. Thompson, although competent, didn’t recognize an impending crisis.

“We need to take her to the oncology office to mark her for radiation therapy,” he ordered.

I couldn’t stop the eye roll. The universal “we” meant me, a respiratory therapist, and any other muscle available to roll the patient, the bed, and all the equipment to a place not considered part of the hospital, a place with no emergency back-up. Thompson made it sound as easy as running to the grocery store.

“I won’t do it. It’s not safe,” I said. My experience kept me calm and confident. Until that moment, I admired Dr. Thompson, believed he saw me as a colleague, believed we enjoyed mutual respect and admiration.

“I guess you don’t care if you jeopardize your license,” he said.

All masks fell away. Pseudo-sincerity. Friendly banter. It meant nothing if I didn’t capitulate. Experience. Compassion. Education. Patient advocacy. I was still just a handmaiden expected to do the doctor’s bidding, even if it compromised the patient.

When the patient died the next day, I felt no satisfaction knowing her death was a wordless “I told you so” for Dr. Thompson. I grieved for her, her husband, and my confrontation with the truth of the universe. I was expendable.

 

Retirement turned out to be a timely decision. My heart demanded a pacemaker. Firing practice at the range became a daunting, dangerous task. My right foot became lazy; they called it footdrop. Depression? I beat it back by taking a little scrap of paper and jotting a positive message about the day and dropping it into an empty wine bottle. “I swam a super mile.” “I did fifty reps with a ten-pound weight.” “Today I accepted the things I cannot change.” There was always wine.

 

I don’t know what made me contemplate mortality. My husband’s health wavered. I began to notice people’s ages, physical limitations, faces mapped by life’s journeys, eyes betraying joy and sorrow. I observed those who parked in handicapped spaces and walked with a cane. I watched Joni Mitchell, listened to her rich, tear evoking voice, rise from a body nearly incapable of movement. I celebrated Mom’s hundredth birthday. One hundred years old and playing bridge to win, critically analyzing the state of medical care, accurate about current events, and asking for book recommendations.

I mourned the loss of younger colleagues, including the head nurse who tried to ban phones. I lunched with another retired nurse ten years my senior. She seemed less present every time we met. Word retrieval, the name of a movie star or another nurse, disrupted our conversations. I believed every day was a gift, but with my friend, every day took a little more of her away. Life became a one day at a time affair. Death. Absence. Being forgotten. This was what mortality looked like to me.

I would not be forgotten.

Good health. Clear mind. Maybe that was the problem. Some nights I’d awaken in the middle of the night, my mind abuzz with minutiae. Whatever happened to my exes? Will the world be annihilated tomorrow at 11:35 a.m.? Have I been a good mother? How will I be remembered? Is a nurse ever remembered? Would the cats miss me if I were gone? Who will feed the cats? It only happened one or two nights a week.

Then, one day, the news elegantly detailed ineffectual governing and politically influenced judicial decisions. The report set my mind on fire. I tossed and turned. I pulled the fitted sheet tight and rearranged my duvet, changed my nightgown and moisturized my itching skin, but still could not sleep. 3 a.m. and I felt like I was the only one thinking about the future, the only one who cared enough to do something that might save the damned country. The only one willing to risk everything. What did the news ghouls call it? The Ultimate Sacrifice. To me, the only thing crazier was to do nothing.

 

The location of the fund raiser wasn’t posted Facebook. I searched local party websites to no avail. I found the information buried in one of the back pages of the main section of the newspaper. The name of the golf course and time were strategically absent. My grandson was an avid golfer who knew every local course. I maintained a post-retirement friendship with a doctor, a Republican, of course, who had been a colleague for forty-plus years. My grandson heard rumors about the course. My doctor friend finagled an invitation, even covered my donation. I had saved his ass numerous times on the night shift.

“I will be remembered,” I told myself. I watched enough spy movies to grasp the basics of security. Even positioned 750 yards away for a sniper shot, with the country in turmoil, I knew the candidate would have the ultimate in security. The pacemaker had reduced the frequency of my target practice. I ran options through my head factoring time constraints. There was never enough time anymore.

I texted my Beta reader, a friend of forty years who proofed and edited my writing, under the guise of working on a story. “If I wanted to kill a public figure and get away with it, what are my options?”

My reader immediately responded with two emojis, one gleeful, one curious.

“Just working on something new,” I texted.

“Poison. Switching medications. Warfarin overdoses are nice. YOU might be able to do IV potassium. Fixing a place where someone might fall. Can’t wait to read this.” Smiling emoji with stars in its eyes.

Switching meds? Out of the question. Successfully anticipating where the man would walk on the golf course? Everyone know he was a cheat, but where he would walk? Impossible.

Poison? I could never get close enough to stick him with a needle or make him drink. A fifteen second internet search provided a list of poisons dating back to the 1800s. Curare. Strychnine. Hemlock. Belladonna. I still loved Fleetwood Mac. The problem with poison was proximity.

Another search landed me in mortality statistics and drugs present in drug-related deaths. My curiosity piqued; my brain shifted into overdrive. Illinois and Georgia both documented deaths from a fentanyl analog, a drug strong enough to kill through absorption by the skin. I had five days to find some.

 

The sun blazed in a spotless blue sky. I watched the man play what I hoped would be his last round. If I had to leave the world, no day could be more perfect. The man’s pendulous belly bobbled when he swung his club. Breasts bigger than mine created mounds in his light-yellow polo shirt. Hair escaped from beneath his red baseball cap and fluttered in the breeze. He sported an unusually dark tan for the time of year. Pressed against the rope barrier, I saw his plump hands, his stubby fingers, and shuddered to think of them touching any woman. The sound of his laughter carried across the green. I assumed the suited man with the earpiece, who stepped forward with a handkerchief, was security. A bulge beneath the side of his sports coat confirmed it. The crowd watched and cheered and followed the path of the play.

At the ninth hole, the players and spectators stopped. The man turned and addressed the crowd spicing his inanity with vitriol and superlatives. His caddy handed him a dozen red hats. He threw them into the crowd.

I caught one and put it on and pictured an emoji vomiting a cataract of green.

“Sign mine. Please Mr. President, sign mine.” I nearly choked on those words. Mr. President. Traitor. I mimicked the tone of a supplicant. My hand, gloved in latex, snaked into the inner pocket of my warmup jacket and dipped into the Ziplock bag. A sandwich bag held the fate of the country, maybe the world.

I didn’t think the man capable of the hard look he gave me. I sensed he weighed the risks and benefits of signing the hat of some aging sycophant. If he ignored me, it could be seen as a sign of misogynistic ageism. Wouldn’t that make a good headline? If he signed it, well, what did he have to lose?

He lumbered over to me, the walk of a very heavy man. A man followed and handed him the proverbial Sharpee. I smiled the smile that showed my crooked teeth. I moved to take off my hat. He reached for it, a move so invasive, I almost backed away. Discipline. I had always lived a life of discipline. I slid my purple, latex-gloved hand out of my pocket and smeared his arm with the deadly powder.

“I’m so glad you chose to play here today,” I said before turning and sidling my way through the crowd. Murmurs of confusion created a susurrus. The crowd dispersed to distance itself from whatever was happening.

When I broke from the crowd, I ran, not before hearing a gasp, the panic, the thud of a mass hitting the ground.

“Is there a doctor here?” The question pierced the air.

Of course there was, but it wouldn’t matter. I kept waiting for the burn and impact of a bullet, the grappling of hands, the force of my body hitting the ground, the pummeling administered by a crowd of mind-numbed worshipers.

Then, I heard it. The only time I had ever heard it before was watching a tournament on TV.

Golf clap.

 

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.