Shock and awe. That about describes the feeling when multiple sclerosis entered my life.
In the years following the diagnosis, changes came in small doses for me, some changes more obvious than others. No matter how I look at it, everything is different than it was before, though not in an entirely negative way. Perhaps some of the changes that I casually attribute to MS would have come regardless. Unlike the neat chapters in a book or the tidy absolutes of episodic television, life’s ups and downs tumble around in no particular order or regard for what else is going on. New episodes begin even while old ones are in mid-stream and unresolved.
Most of us understand and accept that life isn’t fair. Much like a board game, we pick a card… roll the dice… spin the spinner… and we get what we get. Unlike a simple child’s game, though, there are a myriad of choices to be made that directly affect the outcome of those random events.
Comparing ourselves to other people with MS borders on self-abuse. Among us are mountain climbers and marathon runners, nursing home inhabitants and the desperately ill, and everything in between. MS takes many forms and the experiences of other people don’t necessarily reflect our own reality or decide our fate.
When my symptoms first got the best of me, I froze in place. Because I knew I couldn’t clean the whole house, I couldn’t motivate myself to start the process. Because I couldn’t put in a full day’s work, I thought maybe I shouldn’t work at all. Because I couldn’t walk a mile, I didn’t walk a quarter of a mile. I was giving up before I even got started! Doing less only served to make me focus on my physical discomfort and emotional distress about not accomplishing anything. I knew if I continued on in this dangerous cycle of defeat I would be lost.
Attitude matters, and knew I had to change mine. In my last post, I wrote about taking over the chore of doing the dinner dishes. That was only the opening salvo in a small war I was waging with myself.
It finally dawned on me that if a full day’s work was too much, then a part-time job might be manageable. It was. If I couldn’t clean the house, then maybe one room would suffice, or even one section of a room. It did. If I couldn’t walk a mile, then a stroll around the backyard might be nice. Indeed. If I couldn’t write ten chapters, then one page would still be progress. It is.
Eventually, I turned my entire train of thought around to focusing on what I could comfortably accomplish, rather than some misguided notion of what I thought was my duty, based on my pre-MS self. Breaking life down into smaller doses made it infinitely more manageable. I could do so much more than even I realized!
Ah, sweet relief. Now I just do what I can do and no longer concern myself with unrealistic goals. What I can do still changes from week to week and even day to day, and that’s okay. I take pleasure in what I’ve done and put aside what I haven’t. Tomorrow is another day.
Just because I was diagnosed with MS, it didn’t follow that other life events could be put on hold while I sorted things out. Because of that, my attitude and my way of viewing the world, and the way the world views me (or at least my perception of how the world views me) have shifted. I am a much more patient person, more content and more confident than I’ve ever been, even as I’ve lost some of the independence I so prize. Of one thing I have no doubt — what I have gained is far greater than what I have lost.
The cycle of defeat has no place here.
March is Multiple Sclerosis Education & Awareness Month. Read on:
- A Diagnosis Odyssey: Learn why a diagnosis of MS may take years.
- Who Gets It and Why: Get the who, what, where, when, why, and how of it.
- Diagnosis, Denial, Due Diligence: After the diagnosis there may be a period of denial. Then the real work begins.
- Longing for Liberation: Controversial new Liberation Treatment turns conventional MS wisdom on its head.
- Your Choice: Exist with It or Live with It: What wife asks her husband to stop doing the dishes? I can almost hear the collective groan from wives the world over, but there was a method to my madness.
Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a person living with multiple sclerosis, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes. Follow on Twitter @AnnPietrangelo