Autumn is my favorite season, but my body has a love affair with the sun and in the desert it’s still summer at 100 degrees. The sun can do a lot for pain and mood. Lately it’s been nothing but cereal encrusted PJs so, even though there’s no one to see these days, I threw on some makeup, a bikini top and a skirt just so I didn’t look as shitty as I feel. And, then I chased the sun for a day.
They say a picture is worth a thousand words, but often times a photo omits the reality. After all, it’s a millisecond snapshot in a day of 86,400 seconds.
You may see my wheelchair travel pictures in obscure remote locations. You see me busy with art, advocacy and projects. If it wasn’t for the visibility of my chair, and you didn’t know me, it might be confusing how I’m considered disabled at all.
But what you don’t see is the 86,399 seconds of effort in a day not documented by a camera. You don’t see the pain and discomfort from sitting in the car or a plane when I’m out exploring. You don’t see how wrecked I am after a simple shower or washing my hair. You don’t see the effort it takes to get ready and do my makeup. You don’t see how easy it is for me to get sick and run down. You don’t see the resilience required to maintain the standard of living I want for myself, as I’m committed to living life fully and hold high expectations for myself and my work. And, you don’t see the nightly insomnia. I haven’t had a full uninterrupted night's sleep in over 10 years. I can be in so much pain, discomfort, plus whatever weird residual symptoms of the moment, that I can wake up every hour (or less) because I need to be turned or readjusted.
You don't see grief that can last for days. And, it’s impossible to see the growing weakness in a photograph…
And, you didn’t see me last week as growing and undiagnosed stomach problems that have plagued me for years, problems that contribute to the most insecure part of my body (my stomach), finally erupted to a trip to the ER. My stomach gets so bloated that I look pregnant and I can belch better than most. My stomach is so loud it’s as if Gremlins hatched right inside me (I must’ve fed them after dark). In the last year and a half it’s only worsened to the point of long chronic episodes of lack of appetite, untreatable nausea, pain, severe bloating and on and on. This has been the longest as I’ve barely eaten in 3 weeks (a terrible way to kick my caffeine and sweets addiction) and after being up several nights in pain and vomiting, I finally risked urgent care who then sent me to the ER out of concern; second time there in the last couple months.
In the middle of the night with my head over a bucket, I broke down in a thousand tears because I’m so tired of my body feeling like a shit hole and not matching my spirit. And the trip was near useless as they couldn’t help me cause they only look for dire issues like a bursting appendix. After an entire day in the hospital, most of it alone because of Covid, I was sent home with ineffective cancer-grade nausea and appetite pills, and Gastro specialists have months long waiting lists; a reason why I risked going in in the first place. (I want to do a seperate post later talking about how shockingly inaccessible hospitals and medical offices can be: physically, methodology and attitude wise. You’d think healthcare would be the one safe haven for us but disabled really have few rights...)
I don’t often publicly “complain” about the particulars of my health, it’s not my style. I talk about the emotional loss and grief of a progressive condition far more. And when it’s not about that, I prefer to share what makes me tick and show I'm “normal” with many interests outside this disabled body. But I also don’t want to ever give illusions that it’s easy or always great.
Everything I do takes extra drive, but there are many days I just want to lay down and never get up again...and sometimes I do just that. I’m not sharing so you’ll feel sorry for me. I’m just saying when you see a pretty or glammed up picture of your peers, know the story doesn’t stop there. Know there is a lot behind a smile and photos can’t tell a complete story. Most people don’t believe someone is sick when they look “fine” but you can’t tell if someone is sick or in pain just by looking at them. Cancer, for example, is an invisible illness. Besides a shaved head, we wouldn’t know someone has cancer nor the violence happening inside their body.
When more health issues pop up on top of a progressive muscle-wasting disability, it can feel like too much. And sometimes life doesn’t seem fair in its random stacking of weights, but in the soft fall of tears there is humanity and life worth knowing. Thanks to Jason for always being there to hold my hair and head (neck is weak) when I throw up and wipe my tears when I’m unable to lift my arms to my own soaked eyes. This is intimacy.
Follow my wheelchair travels, mini-memoirs and my art @ Instagram.com/kamredlawsk and Facebook.com/kamredlawsk