Pain. Chronic pain. It’s no joke. It’s debilitating. It can lead to death. It can be physically and psychologically crushing to your soul. Living with physical paralysis, for me, pales in comparison to pain. If asked that “What If” question whether I would prefer to live in chronic pain or be paralyzed, at this moment as I write this article – I choose paralysis. This is a pretty powerful statement if you think about it. I am essentially choosing to practically go broke, have people’s hands in my body all day long, have someone dress me, use catheters and suppositories, etc. Think about what I am saying.
This is how debilitating my chronic pain is. For anyone who lives in chronic pain, your life has been undoubtedly changed forever. I know mine has.
When I was living in the ICU after breaking my neck in 2010, I was one of the unlucky ones who also simultaneously suffered a very deep pressure sore on my behind, pulmonary embolisms, and died a few times. I thought “this was the worst of it” to myself. Wow, was I in for a rude awakening 3 weeks after my accident!
It was pretty awesome to be a guest last week Hosted by BACKBONES and sponsored by the REEVE FOUNDATION with a good friend Chelsea McDonald. We really dove into some super personal disability topics that are just not normalized in mainstream society!
It was an honest, raw, and invigorating conversation on how we handle caregiving, sex, challenges, and triumphs with our husbands. A relationship with the added component of a disability is not necessarily harder than any other relationship, but there are certainly added considerations that have to be factored in to our everyday lives, especially because we are both quadriplegics and rely on people to help us with our caregiving activities each day!
I keep noticing these topics are slowly creeping up around the country and I am so pleased to have been part of this one;
Many of you know I’ve been fighting for an adaptive rowing machine called the Vitaglide for some time now with Blue Cross and Blue Shield.
I hit a dead end working directly with BCBS policy directors and I’m now introducing legislation with NC State Senator Jay Chaudhri in May. Very exciting!
In the meantime, I’m working closely with all of the folks at Vitaglide for promotion awareness of adapted exercise equipment for long-term wheelchair users.
They were so kind to write an article on me and all of the work I’m trying to accomplish with respect to health equity and not just health equality!
Every time I fail something, and I do fail quite a lot, or something stops dead in its tracks, I usually have 10 other things in the works.
Life can be utterly exhausting, but I know one person can make a difference even if it is only to inspire others to carry on the work they have started!
Thank you Vitaglide team for highlighting some of the work I am engaged in and spotlighting my consistent efforts for which I won Miss wheelchair North Carolina 2022 on — Health Insurance Advocacy! Nationals here I come in Grand Rapids Michigan from August 15th to August 21st!