My subconscious reviews the previous day’s and night’s endeavors and hands things over to the day shift. It lets “awake me” know how “asleep me” (often “not-asleep me”) handled the overnight work of living with multiple sclerosis (MS). As my eyes adjust to the light or dark of a North Atlantic morning, I review the schedule of the day and assess whether and where the disease is fanning old embers or lighting new fires with which I’ll need to contend.
What It’s Like When MS Is Your Job
There is no commute to this job. No annual leave, no sick days, and few fringe benefits. It’s been a diagnosis-to-grave job for as long as it’s been around. It’s a job we’d all like to quit, but as it’s an incurable condition, we’d rather not be “sacked” either. Much like an executive taking calls and making decisions while driving to the office, I work at living with my symptoms as I rise, ready myself, and endeavor to summit my day. But unlike the man or woman who puts in double shifts or extended hours because they live to work, my work to simply to live. For many, living with a chronic illness is a second job layered over their career, their home life, and all other aspects of their 24-hours-a-day existence. For me, as for many others, the disease has taken away my ability to perform and receive payment for the work I did, work I loved, and work for which I was respected. Multiple sclerosis is a jealous employer that eats away at our employment of passion and pay — either quickly or over time — and now it is our job to live as well as we can within the borders of shrinking endurance and ability. RELATED: The Reasons People With MS Leave Their Jobs Differs by Stage of Life, Study Finds
How My Job Now Compares to My Job Then
I was forced from my dual employment of MS and career after only a few months of struggle. I tried to reenter the workforce on a number of occasions, but it was with an ever-increasing understanding that what I had left in the tank to give to clients was worth less to them than it would be to me if I kept it for myself and my family. Once I navigated ships on the high seas and through narrow passages, cooked for most of society’s strata, and closed multinational deals and worked in five time zones in one week. Now my navigation is through the murky and always-changing waters of MS. It takes three times as long to cook anything for just myself and my wife, Caryn. And it’s insurance paperwork, medical appointments, and energy budgeting — fatigue management — that take up the hours I used to spend managing my work life. While I know how much work it can be to labor under two masters, I envy those who have found a way to keep MS as a part-time employer. I hope it will always be the case for them.
My Work Is Real, Even if It’s Unpaid
As for me, and many of us, stepping away (gracefully or not) from work to work for ourselves, in the most real sense of the word I can think of, has allowed for the recapturing of at least a bit of normalcy in a life that is anything but normal, in our former understanding of the word. My days are now spent working around, alongside, and against my disease. My reward isn’t seen in a weekly paycheck. Rather, it’s in a sense of a job well done when some once-simple, now-difficult task is completed, or when there is energy left over at the end of the day for something more than a dive into bed. Those are the days when the night shift has an easy job of it. They are the nights I am able to run and jump in my dreams. That’s a good day’s work. Wishing you and your family the best of health. Cheers, Trevis
