Waxing and Waning on Grief Health and Disability

Waxing and Waning on Grief, Health, and Disability

It’s hard trying to articulate the depth of this loss to my friends, and to those that care for me on a professional day-to-day basis. I even took some time off from writing these articles, because I needed to pinpoint and state where it was I’m coming from without lashing out unfairly. Even if it is understandable.

I’ve dealt with grief before, but this is a different animal as it is related to my disability. It provides me an avenue of conversation I’d typically never dream of having. I was hesitant in writing my last article, wary about how it would be received. Either having to deal with more of the macabre justification, or defensive caregivers silencing my voice as opposed to amplifying it. I’m glad to say it’s been the opposite thus far. With a lot of these articles, my fellow writers have touched on grieving a life they once had, and I’ve even written more than one article myself in defense of the bad days and angry crippled punks.

I have gotten some of that. Some of those who tried to make my grief and our message about them, but thankfully, that’s not the majority. I have my readers and editors to thank for that.

As I go through this grief though, it’s reminding me of how vital self-care is, and once again realizing that I must balance it, although, lately I’ve been forgetting to. Maybe I should follow my own advice every now and again. Already, my body is exhausted. Generally speaking, my body works 30x harder than the average or able-bodied person’s does in completing day to day tasks, and adding grief to this, or rather, what I like to call, an emotional wet blanket, it’s extra hard. So I’ve been sleeping a lot more, but feeling like I’m sleeping a lot less. I’ve mentioned my friends are hesitant to talk about this issue, and I think that’s the most hurtful part of this whole thing. I know they’re not glossing over it, and right now, my community and I are holding our breath waiting to hear more about the trial. I know that they’re just trying to make sure I can return to normalcy somehow, but “normalcy” is such a broad term. So, I’m navigating new, more intimate and – dare I say – more awkward conversations. Having said that…

I’m slowly but surely learning how to go forward. I’ve been doing a lot more things by myself, and as opposed to feeling lonely. It’s been helping me exercise in my autonomy, a reminder that I’m separate from those around me and that my life is my own. As much as it can be, anyway. Hanging on to privacy when I can, and slowly but surely creeping back to my friends and routine. Keeping talk light and learning who all is truly in my corner. Talking about this issue with my PCAs and maintaining that dialogue, knowing that they won’t know of my fear, but instead, be granted an insight into why my fear exists.

I was going to write something light and airy to digest while you finish your morning coffee or pretend to address emails, but I didn’t want to seem disingenuous. I’ve been writing here for nearly a year and starting conversations, and sparking a few smiles. So I feel as though it’s my duty to be as forthcoming as I possibly can on a public platform while I muddle through this.

I have a way to provide a voice in a way that so many of my peers can’t. For every “keyboard warrior” comment there’s a comment that lets me know I’ve encouraged them in their relationships with self or the relationships of those they care for. I’ve written about little victories before, and making note of the small accomplishments you have throughout your day. That’s what I also have to remind myself. When you go through grief like this, ableism being a factor and that whole bit, sometimes it’s necessary to make note of the fact that you’re still breathing.

I encourage you to be mindful of your small steps with me. To talk about these issues with candidacy and reflection, and I thank you so much for the support I’ve gotten. It means a lot. Thank you for reminding me that despite sitting down the majority of the time, I can still stand rather tall.

1 reply
  1. Mike Harreld
    Mike Harreld says:

    I resonate with what you are saying. I have been paralyzed 30 years and at only 48 I feel the pain of growing older with a disability. Thanks for sharing. I want to get back to my blog but sometimes life and health overwhelm me.

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