What MS is...
- The curmudgeonly neighbor that yells at me every time I walk on the lawn.
- Banal, static, and boring compared to the rest of me.
- Like a parasitic twin that has internally fused with my limbs, bladder, bowel and brain.
- The 1960s Franciscan nun that whacked my sister in the head during our Holy Confirmation rehearsals. It was the last straw among many. Like MS, rigid authority requires me to bend to its will or else. Unlike MS, I could walk away from the RC church. MS is with me until I croak.
- Like the alarm clock from Hell. It wakes me in the middle of the night with neuropathic pain, then again at 5 when toe and calf cramps tell me it’s time to take more baclofen, and once again at 7:30 just because it can, the little tyrant.
It's the thing I pushed against
Probably the most important thing MS has been is the thing I’ve pushed against for many years, so I could keep growing and making goals. It’s the critical, punishing despot that keeps telling me no, you can’t do that--to which I reply oh yeah? Here, hold my scotch…
I gave it a lot of power
At first, MS was a novelty. It was fascinating because it was new, a shiny object that dazzled while its unknown aspects terrified me. I gave it a lot of power just as I gave medical professionals the power I thought they deserved. This is my pattern when I’m unfamiliar with a thing. The experts know best, and if they’re leaving me in the dark about a lot of this stuff, they must have a good reason.
Doctors don't always have a good reason
It didn’t take long to realize that doctors don’t always have a good reason for what they do. At times, they can operate in auto-pilot mode similar to that of the disease itself. The importance of self-advocacy grew out of that early revelation. I had research skills already and easily fell into using the internet as a tool to fill in the many gaps my doctors left vacant. From there, I learned that doctors are not among the pantheon of uber-humans, which oddly disappointed me. I was already an atheist, yet it really got to me that doctors aren’t god, either. Was I still looking for somebody to play the role? Hmm, I still had a lot of work ahead of me. There was a goal I worked towards without being able to name it. But I can now.
In each stage of my life, I think I’ve defined independence a little differently. Early on, it was rebelling against being a sheep and maintaining my opinions. But rebellion is only one path on the journey towards independence.
Being a contrarian is something I learned from my father. But as I grew older, I could see how what at first seemed to free him from convention was actually making him build his walls higher, preventing him from breaking out and growing. My ever-more-sophisticated ear heard negative language and identified it as being very limiting. So independence took on another aspect in the form of a challenge to translate negative rebellious language into a positive statement.
I define independence on a continuum
We tend to describe what our lives are not because of MS. Many times I’ve enumerated the many losses, and rightly so. It has taken so much, things that were really important to me. But I don’t stop there. More and more, I imagine my life as just that, a life, full of ideas, dreams, and plans. In my imagination, MS is incidental, not the main feature. In real life, it is not so incidental, vying with those ideas, dreams and plans for center stage every hour of every day. Now I define independence on a continuum. I’m in a tram that takes me farther and farther away from feeling loss and closer to developing the confidence that grows stronger whenever I accomplish something alone, such as fixing a minor plumbing issue or a loose joint on my strider. Banal, everyday things about which I no longer feel helpless.
What is MS? The very thing that will always push me to become more capable.
The holiday season is among us and can be so stressful! Do you experience more flares during this season?