We are MS Daredevils, Defying Gravity With Every Step
Embarking on a lifelong voyage with multiple sclerosis has demanded much more of me than only navigating the rough winds of disease. I’ve also tunneled down to the core of self-knowledge. Self-discovery has been a springboard, bouncing me upward and outward to expand my awareness of and appreciation for others. As with all traumatic events, MS-related hardships slash me like the stinging, sharp edges of saltwater hail in an ocean storm. When it’s over, I more deeply cherish the calm waters that lie ahead.
Those calm waters are also populated by people who are not like me in any way. Hardship has clarified the details of how I want to be treated by “the other.” It’s been relatively easy to get myself straight on that. What’s harder is embracing my role in it. Naturally, I’d like to play a passive one. It’s easier on me.
Being passive isn’t going to get me what I need...
But early on I learned that being passive isn’t going to get me what I need and want from the world. Others need, want, and value different things than I do. They look at the same scenarios I do but make vastly different observations. For example, they see a blue space with a healthy-appearing driver emerging from a car. They might think faker, while I think invisible symptoms. It’s easy to get mad just reading such a scenario. But it's possible that this cynical “other” has never needed the services I need and therefore hasn’t been forced to open up their minds. Most of us have to be forced into expanding our awareness. After all, that’s what it took for us to see the other side of paradise, wasn’t it?
The culture we live in has a lot to do with that, especially gender, ability and class. They all work together to inform and prejudice our culture. It’s why we self-segregate. We don’t want to have to think about or face people who aren’t like us. And if we enjoy the benefits of white privilege, able-bodied privilege, or wealthy privilege, we have not the slightest motivation to think past it, let alone petition to change it.
As pessimistic as that sounds, I am generally a positive person. Even though the outcome of the 2016 election devastated me, it also reminded me that we can make a difference on two levels: as individuals and as citizens exercising our civil rights. As citizens we can sign petitions, contact our representatives in both houses of Congress and march in protests. And of course we can vote in elections at every level. As a citizen I should participate to some degree in the decisions that govern our lives.
As an individual and a poor woman with multiple sclerosis, I should devise a strategy that moves me towards better quality of life. For me it starts with assembling new life narratives, things I believe to be true based on experience—and always include humor! Here are a couple:
Tough love doesn’t work.
Denying help or restricting access to help does not foster self-help. It’s like that old chestnut about beating a dead horse. No matter how hard you whale on it, it ain’t moving. Self-flagellation is something I learned in my formative years from frustrated, damaged adults with whom I share nothing in common--except frustration and damage. The only difference between us is probably that I reach out to others now and learn more of other people’s ideas about how to handle life’s difficulties. Since I no longer emulate those early mentors, I can be sad for them instead.
If the prospect of trying something new scares me, then that’s what I should do.
Within reason, of course. Let common sense dictate those choices. If it scares the bejesus out of you to imagine stepping inside a cage with a hungry lion, I’d go with my gut on that one. But if it makes you nervous to think about walking farther than the end of your sidewalk and crossing the street, then hatching a plan to do that thing might be the very thing to do. Be safe, maybe ask someone to tag along. After all my challenges, as hard as they were, I was okay. And no matter what happens, you’ll be okay too.
We are MS daredevils, walking whole city blocks with a single cane, ambling down narrow hallways with streamlined titanium super rollators, defying gravity with every step. We are the few, the proud, the neurologically-challenged. Endowed with special skills, we will likely be the lone survivors of a fire since we are experts at drop-and-roll. We are the Super Stricken, fighting inner foes that threaten the nerve health of vitamin D-deficient folks living in cold climates the world over. We should have our own contingent at Comic Con—Las Vegas.
Maybe next year.
Have you experienced any of these vision symptoms? (select all that apply)