Ability, Inability, Disability, and Waiting

It’s been a hard few weeks since learning of the systemic nerve damage throughout my body, so I was morbidly amused when I found that I couldn’t open the door to the university’s disability services office without injuring myself. 

Lately, doors that pull inward have not been friendly to me. Moreover, doors that pull inward and are located anywhere at my university have not been friendly to me.

Take for instance the door to my work area. Every day, I pull the door open and nerves in my shoulder, elbow, and wrist send fiery pain signals to my brain. I stand still for a second. I breathe and count to 5. Those biofeedback lessons have taught me something about pain management, and after a few minutes all systems return to normal — well, as normal as my normal has been these last few months.

Anyone who’s seen my work patterns knows that I’ve developed an interesting habit to avoid this pain. It’s a simple enough solution, I suppose. I mean, if opening a door caused you fiery nerve pain, the most reasonable course of action is to not open that door anymore, right? So, therefore, it continues to make sense that any time I need to leave my office to use the restroom, I instead walk in the opposite direction, take the fire escape door (which pushes out) to go downstairs, then walk up the center staircase and to the bathroom.

My fitbit tells me that this turns a 82-step trip into a 285 step trip. I don’t do math much, but I think this roughly equates to:

Choice(285 steps + stairs) > Choice(82 steps + pain)

So I choose the stairs. Unless I can use my cat-like reflexes to run from my desk to the door when someone else opens it.

***

I’ve been hesitant to talk much about what’s going on with my body – partly out of grief, partly out of still waiting for more tests results to come back, and partly — and maybe mostly — because I don’t really want to explain to everyone what’s happening. Dredging up my feelings and putting them on display isn’t helpful for me right now, especially because I’m still waiting on test results.

Admittedly, this counterintuitive because I’m putting all this on a blog post for anyone with the link (or a decent ability to Google) to read. But at least this blog post is doing me the favor of quelling some of your curiosities on why I’m doing strange things like wearing braces/slings and walking a really convoluted way to the bathroom.

What really cemented my decision to not want to tell people was that the day after I received a partial diagnosis of the damage, I went to a special event at the university Chancellor’s house where most people (none of whom I had ever seen before) felt it their duty to ask me what happened to my wrist. The first-year medical students seemed particularly hurt when I brushed it off with a simple “nerve damage” and quickly changed the subject. Shortly after, when dinner was served, it quickly became apparent that there had been little attempt to make sure that there was food available that I could safely eat (with food allergies), even though I made sure to request accommodations through the appropriate people. So I resolved that telling people things takes a lot of energy, and why spend that energy to tell people things when my needs still won’t be met? Too often, the reason for asking is a formality or to satisfy a curiosity but it does nothing to soothe my pain, my fear, and my insecurities.

So, in my pursuit of self-care, I’ve become hardened in my belief that I can say no, that I’m allowed to protect myself because I’m not able to give you an answer to the ubiquitous “What happened?!?” and the insecurity of waiting is the worst. (But, as my doctor reminded me today, waiting might be the easy part. Knowing may be even worse yet.)

Please know that this isn’t a reflection of any of you. It’s a reflection of how much stress it is to struggle with basic, every day needs and my desire to save some spoons for the big things. Like that dissertation.

And if you have not read Spoon Theory by Christine Miserandino yet, you should: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

 

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