My injury has changed my life in considerable ways. It’s by far the single most complicated thing about my body. Much like it took me over a decade to find an approach to autistic life my spinal cord injury is going to need a lot of engineering.
Sometimes it makes me cry. But I suspect it’s not making me cry for the reasons someone might expect.
I thought that was an interesting thread so here’s a post about it.
I have a diagnoses for cauda equina syndrome which is a spinal cord injury effecting my legs etc.
However that’s not really the whole story. The main thing is my body has changed. I am much wobblier than I used to be and I have a lot of new sensations.
The impact of the change is that I have way way less control over my life than I used too.
My environment has so many different barriers it’s a huge challenge to make things workable. The barriers come in many different ways. Often they are simple physical barriers (narrow doors) or they are more complex dynamic barriers (can’t keep it tidy!)
For most of them I can engineer my way onwards. Iterating on solutions is quite fun. Making life better is a very positive feedback cycle.
However I often can’t engineer the hard choices. I don’t have much meaningful control of the space. Between my flatmate, carers, friends visiting and normal life stuff my environment is constantly changing. I have to find ways to accept and manage the sense of intrusion this triggers.
My flat is my entire world. I can’t easily go outside and I also can’t easily fix the changes people make. Every change made (smells, items, moving things, turning lights on and off) eats into me.
It eventually overloads me and I just can’t handle the changes. I don’t get angry. I just get sad. A deep sadness that sits in my chest. That’s one of the times when I cry.
Being able to predict the sensations I will feel in the future is a foundation of my ability to live with high levels of pain & tingling.
Prediction gives me control. If I can accurately predict pain then I can make meaningful choices.
For example. I can choose between sitting in the buggy or sitting on a beanbag based on predicting the pain levels each will trigger.
I often phrase this as choosing pain. I am not in control of the pain and other sensations existing. But I can be in control of exactly what I experience and when.
When I can’t predict pain levels I cry. I cry because once again I feel entirely out of control.
The last few weeks have been hard. For various reasons outside of my control my home environment is not stable. My injury is also changing.
I can get it to be kinda sorta stable for a few days only for it to be derailed by the actions of others. They don’t intend too. They are busy and have their own lives and challenges. The harm caused is accidental but still extremely difficult to manage.
My body is also the least predictable it’s been in months. I’ve had a lot of new sensations with new triggers.
This stuff makes me feel widely out of control. The sense of sadness in my chest gets really heavy and I find myself crying.
It’s not crying in a loud way. It’s not trying to get attention or communicate sadness. It’s just something my body keeps doing.
More than ever I seem to have a near constant flow of tears just waiting ti come out. I have to deploy all the tools I can to remind cheerful and positive.