First thing’s first. Dear Reader, I owe you an apology for neglecting recent columns. It feels like life keeps delivering me a whirlwind oscillation between extreme work and extreme sickness, with very little equilibrium in the middle. That being said, the psychological whiplash from this raucous see-saw has impelled me to seek some semblance of balance. And the philosophical journey keeps leading me back to one idea in particular:
What a word. Is it a good thing? A sign of collaboration and harmony? Or, is it negative? The omen of coercement, jeopardy, settling for less than what is desired or deserved?
Like all language, I suppose, the connotation depends on context.
I work in a collaborative environment. “Give and Take” is celebrated. “Yes And…” is the go-to motto. While some might argue that this mentality has led to oppressive practices, recent societal and business trends have placed an emphasis on understanding historical power dynamics in the entertainment industry. This has spurred a ground-up movement of respecting personal boundaries and cultivating a culture of consent, of creating a brave space where everyone can do their best work. Ideally, in this light, compromise occurs graciously and leads to creative win-win solutions.
But then I think about the act of compromising one’s own body. In a medical context, this act of compromise is indeed a sacrifice - giving away something valuable in order to reap a greater benefit. It is a choice that presents itself to many with chronic conditions, myself included. In fact, I have willingly been living with a compromised immune system for over eight years now.
When posed with the question of whether or not to jeopardize my own general immunity, the decision was swift and easy. I had been cycling through multiple Disease Modifying Therapies (DMTs) for MS over the course of my first year following diagnosis, yet nothing was working. I was running out of treatment options, but the degenerative effects of MS were only getting started. My daily life had morphed into compounding relapses, increased disability, and a robust trivia of hospital cafeteria menus along the front range. So my neurologist pushed for special approval to administer an immunosuppressant drug not yet FDA approved for MS. The novel treatment course (which is now widely used for managing multiple sclerosis) targets and removes the B cells in the immune system that cause inflammation and damage to the nerves in the brain and spinal cord. If I wanted to live anything akin to a “normal” life, this riskier immunosuppressant looked to be the best option.
Was the risk worth it? Yes. Hands down. No question. Without the benefits of this DMT, I likely would have spiraled further and further into irreversible physical and cognitive disability, slowly and devastatingly erasing all hopes for a bright and capable future. If given the choice again, I wouldn’t change a thing.
That being said, there still are consequences. There still are tolls. Especially when living through a global pandemic. The constant “If This, Then…” scenario planning of potentially life threatening choices. Whether or not to see people. If so, how to do it safely. Whether or not to vaccinate. If so, when to do it in order to create the best possible chances of efficacy. Whether or not to travel, to attend a public gathering, to date. And, through it all, how to be okay with the decision that is made.
My compromised immune system has given me a future. It has also caused loneliness. It has caused medical trauma. It has opened the door for numerous bouts with Covid. Speculatively speaking, I don’t think that my immune system has recovered from battling the infamous respiratory virus. What’s more, I often find myself wondering if it ever will, or if I am now destined to navigate a future of recurring infections and illnesses. And if that is the case, if my newest normal is a life that is punctuated with extra trips to the doctor and extra prescriptions filled at the pharmacy and extra hours spent in bed, then how do I want to spend the precious moments of relative health? Do I continue to bow down to the often celebrated grind of busy-ness, the addictive allure of ambition? Or is it time to consider a different compromise?
And - whichever route selected - will the compromise have a positive effect on my life?