Our Partially Accessible World

When you have multiple chemical sensitivity, you get used to what is safe and what isn’t. At least semi-safe. You are always ready to run, mask in handto get yourself to safety if need be, and sometimes you stretch outside your tiny comfort zone to do something wild. Like go to the grocery store. Or walk into the library.

I’m so tired of the circle of possibilities shrinking in my world. Not just because of the chemical sensitivity but because, with this latest Babesia treatment, my muscles are getting weaker, like Joe Mauer and his bilateral weakness. I try to overcome it, but it is getting harder. And my breath is so limited. Bound by fascia, challenged by air hunger, it’s just hard.

I know that once the treatment kills off more of the bugs, this will get easier, but I’m tired of not having a disability that is easy to recognize, observe and treat. I’m tired of having an illness that doesn’t afford me the acknowledgement of its existence, doesn’t allow me to get a disability parking spots and won’t let my kids qualify for wish groups that might give us some support. I’m tired of having to be on my guard as I move through my already too limited world.

Now, we have a new drama added to the mix. My lovely, mostly safe food co-op, which is small and easier to manage, has a bike shop as a new tenant. I love the whole idea of a bike repair shop in the immediate community, but the fumes are intense for me. Not for most of their customers, but for me. So, one of the few places I could go, I no longer can without consequences.

I also just started seeing a practitioner who practices in a split level building with no elevator. It has no parking lot. So, I sometimes have to park a mountain’s length away from the door. It is exhausting. But I like her. So I do it. I give myself plenty of time in case my legs give out or my breathing makes me rest. I thought it was illegal to shut disabled people out of buildings and events. But it isn’t.

I just want a world where we all give a little, instead of the people who are disabled having to give it all.

When I was working as a yoga teacher, or building scenery for the theater world, I never imagined that I would someday be disabled. Never. I could swing a hammer and carry heavy tables and run power saws. I could run to my car and shift the clutch and walk around the entire grocery store with no effort.

I no longer take anything for granted. Each step becomes a lesson in mindfulness. They hurt. So I slow myself down and listen. Every breath is shallow right now. So, instead of jumping into the loss, panic and frustration, I notice. I breathe fully into that not-so-full breath and let it be okay that I am right where I am.

In this moment, I will stay present with my disability, instead of wishing for a different life. Today, I need to find the joy within. It’s there, somewhere. RIght behind the probiotics and the antibiotics and the nerve pain medicine — right there. I just have to notice it.

And the only way for me to do that is to slow down. My illness gives me a hyper-active exhaustion. I push through anything. . just making myself sicker. But, I’m trying to rest more. Take more time to be present with this step, rather than trying to conquer the huge mountain I feel like I’m still standing at the bottom of. One step at a time. That’s all I can do.

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3 responses to “Our Partially Accessible World

  1. Very good timing, as May is both MCS Awareness Month and Lyme Disease Awareness Month! Great post!

  2. Whitney Williams

    Amazing piece. This says it all. I am going to forward the whole thing in its entirety to family and friends. Thank you for putting into words what I usually cannot anymore. ❤

  3. Thanks for writing this. I didn’t really know about MCS until I experienced it first hand in the grocery store. MAN…what a wake up call. Since then, I’ve had attacks in the sauna (nice body lotion), the kitchen (aargh bleach), a friend’s house (great air freshener), and a parking lot (thanks for the tar).

    Fortunately, it doesn’t bother me consistently…something I don’t really understand, but I am grateful for it. Seriously thinking of investing in a gas mask. Any thoughts?

    XOXOX,

    Kathy

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