Feeling my disabilities

Cartoon of Derek in his wheelchair looking at an oversized envelope
I should send this blog post as a letter to myself.

Image description: Cartoon of Derek in his wheelchair looking at an oversized envelope

First and foremost: Happy International Nonbinary Day! I hope any nonbinary, gender non-conforming, genderfluid and genderqueer readers are feeling the love that’s being shared with #ThisIsWhatNonBinaryLooksLike and #InternationalNonBinaryDay. If you don’t know much about nonbinary identity, here are three great pieces to read:

It’s important to recognize all gender identities — personally, socially and legally — so please do take a moment to read at least one of those pieces. ❤️

For the rest of today’s post, I’m focusing on myself. And that’s what I really should have done all day today. However, I kept getting caught up in the idea of “powering through” to get more of the chores done — but the cost wasn’t worth the achievement.

I am a person with physical disabilities. The main culprits are a spinal cord injury and brain damage from a head injury. I use a wheelchair when I have a lot of ground to cover and on a whole variety of bad days. However, I can actually stand and walk a decent distance using crutches or other walking aids on most days, and I even manage to walk unaided on good days. The term “walking paraplegic” is sometimes used as a definition for this state. The coordination issues and muscle weakness also affect my hands to a certain degree. Fine motor control takes a lot of concentration.

There are many days when I can walk from the office to the kitchen for a procrastination snack few times. When I can stand at the counter to finely dice and then stir fry vegetables or wash the dishes. When I can carry the vacuum cleaner from the utility room to the sitting room or the laundry out to dry. When I can clean the litter trays. However, despite 20 years of dealing with my disabilities and knowing my limitations, I don’t always stop to ask myself if I should do those things today.

There are days when the cost of those activities is minimal — a manageable amount of pain and fatigue. There are days when they’ll lead to a lot of pain that day and the next. And there are days when I’m running a deficit already because I’ve been doing too much and doing just one of those tasks will tip me into a flu-like state for a few days and increase my risk of seizures.

I always know what state I’m in and what impact the task will have. But sometimes, I (willfully? blindly? stubbornly?) ignore the state I’m in and power on with tasks that are past my limit. Attempts to rationalize this behavior always come up with different reasons. “Because I didn’t want to disturb Veronica’s work to ask her to do it.” “Because I thought it would just take a minute.” “Because wet laundry can’t sit for long.” “Because I wanted to help.”

“Because I wasn’t thinking.”

“Because I wanted to ignore my limitations for a minute.”

Veronica has explained to me a few times how challenging it can be to navigate these situations. As my partner, she knows me well enough to see when I’m at or past my limits. But should she always say something? Or should she preserve my autonomy despite the risk?

Nothing that I decided to take on this morning was critical and I was already running a deficit from the preceding week. Veronica did sit me down (twice) and ask me to just listen to my body; and I eventually admitted that I was overcompensating for feelings of inadequacy. And I finally did rest through the afternoon and evening, catching up on comic reading (House of Whispers and The Books of Magic).

We’re fortunate to have a relationship that prioritizes communication. That allows Veronica to more easily navigate between giving me my autonomy and reminding me of my limitations and their risks. It also affords me the space to be more honest about why I sometimes struggle with a state I’ve known for 20 years. In relationships that involve disability, I believe that level of open communication is critical.

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