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;
I am so honored to be featured once again in New Mobility Magazine to talk about my marriage, the challenges we face, and how we work through them. Marriage is challenging enough, but when you add in the layered complexity of disability into a relationship I find that you have to work even harder on communication and making things work.
Check out the article below and I hope you enjoy 🙂
Recently my husband and I took a week long vacation to visit a friend in Florida. I distinctly remember one day when he was helping me with all of my bathroom duties, getting my swimsuit on, lifting me up from a very low surface bed (killing his back), lifting me into the pool, showering me by the pool, helping me with my makeup, straightening my hair, and then cleaning up. These are just a few of the things he’d helped me with that day, but the list really does go on.
The numerous amount of small things I need help with in a day seem endless whether that be filling my water bottle, fixing my feet on my wheelchair, grabbing my legs as I have uncontrollable spasticity, getting me in bed when my pain is through the roof, etc.
The day came and went, and as I was hanging out with my girlfriend I rolled back into the bedroom to find him sprawled out on the bed. He was just tired – I mean how could he not be? He was taking care of his quadriplegic wife 24/7 for 8 straight days. I remember thinking how guilty I felt for being such a burden, but not once did he make me feel that way. These are my own demons I battle with as a quadriplegic because I need full-time help every day – all day.