I Am Not Expendable

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.