I’ve been having a hard time lately as I realize I don’t let people into my world as a physically disabled person. My outside body tends to work like a perfectly tuned orchestra for being physically disabled. The inner workings of my body are more like the makings of a terrible horror movie.
Today I was supposed to help sort clothes and food for a volunteer project. I could do it seated from my wheelchair, but I knew the twisting and bending would be more than my incredibly painful back and neck could handle. I’m working closely with pain management, where I think I ended up with an angel on my case, but despite it being an option, I’m not going down the 24/7 opiate route as I enjoy having a clear mind and just enough energy to get by more than constant pain relief. It’s a no brainer for me.
I said I would never post a picture like this as I’m a prude by nature. I was doing just a home practice of yoga, so nothing official. No one was watching. I just attempt to do a little iyengar yoga daily, whether it’s a couple stretches while the dogs are eating, a full length class, or my home practice, which was 26 minutes today.
I was lazy and kept my pj bottoms on and just put on my sports bra. I take pictures for myself. They are for seeing where I can improve alignment of my very degenerated spine to get pain relief. It was interesting as when I did this pose today, I felt a release in my spine and neck. It’s not a back cracking, snapping type release, it was like I could finally feel space between my vertebrae. If you’ve ever jammed a joint, think of how amazing it feels when it loosens. I have a fusion in my thoracic spine, nearly every disc is out of place in one way or another, I’m having the beginning of a scoliosis S curve in my lower spine.
When I looked at the picture, I saw my spine alignment was nearly perfect. It’s really scary to be 90 degrees to the floor. It’s also freeing and exciting. I let my spine and neck dangle for the longest time I ever have. It felt so good. I wanted to stay forever. My pain extends from other diagnoses besides the degenerated discs. So a few moments of loose, dangling, freedom is a welcome distraction from my whacked out body.
Iyengar yoga has been scientifically studied for the relief of chronic lower back pain. It’s even been written up in Harvard medical journals. I just put it out there if you suffer from chronic pain or autoimmune diseases, iyengar yoga has been amazing for me. It hasn’t cured me, but it’s part of a path of taking my health into as much control as possible with some phenomenal results. I will put the disclaimer that many with chronic pain or illnesses aren’t doing this pose. It is much more gentle. I do it because I was blessed with a naturally strong body that thrives on using my upper body strength when my legs are often useless.
Sure, it’s amazing what I can do with my body with my yoga and ability to hike with my specially designed forearm crutches made for disabled people to enjoy the outdoors, but I keep emphasizing what I can do understanding I have my own internal disability discrimination. My mantra has been “yes I’m disabled, but I don’t feel disabled”. It denies who I am. It doesn’t allow people around me to understand the disabled experience, my disabled experience.
I can’t go up a flight of stairs. I’m supposed to travel in October that I doubt will happen now. A couple ladies offered to share their space with me for a couple nights of the trip. I felt ashamed in asking if it was up a flight of stairs as I would appear ungrateful or some strange idea I have in my head as I knew I would have to say no. I kept turning it over in my head how I could do a flight of stairs regularly for 3 days. It’s not going to happen. Well, it turns out the space will be fine if it’s even safe to go.
It’s an interesting thing when you come to acceptance about things in your life. It feels free. My acceptance the past couple weeks is that I’m disabled and my ableist ideas that I were damaging to myself and to others perceptions as physical disability doesn’t always look like you can’t move. The handful of physically disabled people I have met in person move in incredible ways. It’s not because they are disabled. It’s because I admire people who exercise or try new things given challenges.
So this piece of art is far from complete. I realized I need to honor my disability in ways that are meaningful to me. It has to do with wearing the “weight of the world on your shoulders” and how that looks for me realizing I will never walk unassisted. It’s beyond just disability, feel a lot of burdens in my world and the world as it is. This piece of art will also be how I work to feel lighter.
If I honor my truth, others will honor it too. I can stop explaining what my needs are and emphasize what is hard for me as well as celebrate what is easier for me since I went down a path over 2 years ago to take the best care of me possible. It gives me personal self respect that I hope trickles down to others through understanding.
I like to smile. I want to emphasize what a miracle my body is. I laugh through my pain. I spew positivity when my back is spewing venom at me for not taking care of it while I ignore the reality that I can’t be all things at all times.
I’m strangely grateful for what’s happened to me medically. It gave me an excuse to be and examine a lot about my life I never would have if I hadn’t been thrown into such a medical debacle. It’s not an overly positive grateful. It’s more of a noticing how this has been an integral part of big personal change.
As I reviewed some lab results that came in on my patient portal last week, my stomach, heart, brain, just about everything sank into a pit. Medical debacles have also allowed me to sink into some healthy grief as well as examine what it means to have genuine faith that I am doing the best I can and whatever or whoever looks out for me is doing a really good job. (I don’t so much like to get into spiritual leanings here as it can be very triggering for trauma survivors, so I’m not skirting the issue. I’m simply being cognizant to be an open space for now, and heck, I’m not even sure myself?)
So as much as I have embraced the awful and good parts of how trauma has impacted my life, I’m now working to fully wrap my own mind around the idea that I’m disabled and throwing out the concept that disabled people can’t do anything. I was somehow special. It’s been a time of examining my privilege. I was hiding under a guise of ableist privilege when it completely puts down every disabled person as we are as diverse in ability as able bodied people.
As much as I hate labels. I’m here to say, yes I’m disabled. It’s hard. It’s also nothing short of a blessing and couldn’t imagine life any other way. I don’t even wish for it, (although I curse my pain plenty 😊).