I do what I can and often I push past where I should. But that’s my choice. I’ve always thought I can handle anything I put my mind too. But that’s not totally true. It takes accommodations to be able to fully participate in most anything. Today we see more and more situations where folks are not free to participate unless they can meet the able body requirements needed to do as such.
I learned a scary lesson on that one recently. I know I don’t look it but medically I look like I’m dying on paper. I get a kick out of people’s reactions when I say that or they review my chart.
Joking around is something that makes life a bit easier for the forever sick. All jokes aside, when things get dangerous you want to be surrounded by people who care. People who put people’s wellbeing ahead of any agenda. I kind of pride myself on being prepared for all things. I’ve done well in preventing issues for many years now and this time I let my guard down in multiple ways and that lead to negative outcomes.
I found myself having a full blown anxiety attack in an ally behind a hotel in a city thousands of miles from home. clinging to a friend on the phone a half hour later I had finally caught my breath enough to move to my room. In the moment it felt dark, empty, isolated, and terrifying. I had to ask them to help me make sure I had changed my flight correctly. My brain wouldn’t accept the flight was in the morning, it felt like it was sooner and I needed to hurry. The overwhelming feeling of needing to get out.
Thing is that’s been a place I’ve found myself a lot as of late and it’s not a good feeling. It’s to familiar to my youth. I was asked to do something and it destroyed something cherished. An unintended consequence I feared but didn’t think would really happen. I let my guard down.
But like a lot of things in the disabled world, you find out painfully, you were wrong. I visited a friend who can see the wonderful pool and hot tub at her apartment but that’s about all she can do, look at it. There is no ramp, no chair, no way for any one who can’t do stairs to get in and out. You would think in 2026 we would do better in America. Reality is it’s getting worse as more and more disabled folks are marginalized.
I always thought it was pretty cool what I can do considering I spend over 2 1/2 years locked in a bed drugged up enough to keep me from crying out. Validation came via my provider when the results of my biopsy came in. She was waving it over her head telling me, “this is validation. I don’t know how you are walking never mind treading water.”
I’m not suppose to be able to walk. I’m not suppose to be able to feel the ground, sense hot and cold, but somehow despite it all I pull it off. Don’t get me wrong, it hurts like hell, but at a hell level I’ve learn to contend with. It’s not that “I got use to it,” No one gets use to being tortured 24 hours a day, awake or asleep, it never leaves.
I’ve learn to exist beside it, outside of it yet next to it. I know sounds confusing, it’s kind of hard to explain. I can tell you it’s taken years of therapy and many medications trials and fails to find the right combination to get here. It will always be a work in progress.
There are always negative sensations. I’m never not in pain. It’s the intensity that changes. Sometimes when my legs are on fire it will feel as if they are also wrapped in bob wire. While I am walking barefoot over broken glass. They don’t call CRPS (Complex Regional Pain Syndrome) the suicide disease for nothing. 70% of people with CRPS become suicidal.
If you or someone you know is struggling with chronic pain, overwhelming emotional distress, or thoughts of suicide, please know that support is available:In the US and Canada: Call or text 988 to reach the Suicide & Crisis Lifeline, available 24 hours a day, 7 days a week. Services are free and confidential.International: Please visit Find A Helpline to find free, confidential support services available in your country.
I don’t know exactly when it happened but I wanted to get out of what I called “my cell.” The room that I lived in for what felt like a lifetime, all be it a hazy one.
Then I raised enough money for IV treatments. Every month the doctors would sedate me and run a four hour infusion in hopes of decreasing the pain enough to function. I would spend the day puking and then another day just to recover from it all, but it worked.
Side effect, it takes memories. A double edge for certain. On the one hand, there are parts I’m happy to not recall. On the other hand there are moments that not only took memory but bits of my soul. Moments painful to know you have forgotten parts but not enough to spark anything. It’s just out of reach, frustrating at times.
It took years to get to where am today and that doesn’t mean there aren’t hard days. Sometimes my temp drops so low it’s unreadable. Others times I’m running at 102 but I feel cold. My body has lost the ability to self regulate temperature. An aspect of the Small Fiber Neuropathy my neurologist tells me is hardest to control.
I take high doses of a medication to do that but I have to start taking it a half hour before I get up and the earlier I get up, the less of the evening I’m going to get with controlled temperatures and the ability to see clearly. When the mestinon wears off it can be like trying to see through a funhouse mirror. If you have no one around you that you trust that will care enough to help you, it’s friggin terrifying.
When it’s super bright out or at night, I can’t see well. My eyes just weaken and become blurry. I use to paint my way out of it, but now, not so much.
People will say they are “all inclusive” but if the pace set by the 40 hour a week employee, is it really “all inclusive?” I’ve face multiple issues around this the last few months and it’s destructive to self esteem.
More so these days while folks with disability are being silenced, ignored, and push away as to much of a problem to deal with. What it becomes is a big fat sense of failure because I can’t keep up, fail to show up, and become pushed into the wallpaper. The place the able bodied want me hidden. All these failures that I can’t overcome unless I grow a new body, and that is horrifically depressing. Which is where I find myself. That place that makes me feel like I never want to leave my home, my safe space.
But, you try anyway and then, you crash, hard. I’m going to give myself some grace and time. I’m going to step aside a bit and concentrate only on the most important that can’t wait. Everything else will come in due time.
That’s what I learned on my recent misadventure. What should have been easy ended up with hypertension and hypoxia. One solid fall, 15 hours of travel followed by abandonment on the side of the road, in a city thousands of miles from home. Left in the blazing sun, blinded, and 100 degree heat with not one person giving a damn. Did I mention the bus driver that put everyone off a bus so she could go elsewhere, telling all on board to walk. Disabled or not, walk. Perhaps embolden by our own government turning it’s back on disability rights.
They will no longer follow the Olmstead decision, they have removed federal requirements for buildings to be accessible, and the ableism is blinding. If we can not serve them or make them money, we serve no purpose and they would rather institutionalize the disabled then give equal footing to the altabled. Shameful, isn’t it?
