I had been thinking for several days about what I wanted to write about. I’m not an experienced wheelchair user like many of you, and I’m just adapting to life with my chair, and it’s been overwhelming. I wanted to share a few things that I’ve learned that may help others adjusting to the chair life.
The first thing that I discovered was incredibly necessary was an excellent seat cushion. I suffer from several back problems and chronic pain, and finding a truly supportive and padded seat cushion gave me a lot more confidence in my chair because it eliminated most of my lower body pain when using my chair (for reference, I am unable to sit up very long in anything, but slowly that time is increasing). Because of the pain relief, I felt much more confident heading out for outings with my chair that weren’t only doctor appointments and absolutely necessary outings. I was able to start rejoining life the way I used to, though still in a limited capacity due to my diagnoses.
The second thing that has enhanced my chair usage has been finding a back of chair bag that holds all of my necessary feeding supplies (I am dependant on a jejunostomy for all nutrition), as well as looks slick and doesn’t take up too much room. I myself ended up with an Osprey Nova backpack because it’s easy for me to use when I am able to be upright (or my fiance to carry while I use my forearm crutches), as well as unobtrusive on the back of my chair. It’s a very expandable bag, and comes in great colors as well! I ended up with gray because I wanted it to blend in better, but the other colors are truly stunning as well. Also, being a “tubie” (feeding tube user), having a bag that works as a purse plus for feeding and is easy to access is an absolute gift!
The third thing, and in my mind, the most important thing, is the community that I’ve grown around me. As an adult transitioning to full-time chair use, it’s been incredibly hard. When I was younger I rode horses professionally, competed in varsity sports, and slowly losing that over the past decade has had a huge impact on my self-confidence and feelings of self-worth. I was wallowing in pity. But as I’ve surrounded myself with other amazing women and men who’ve either been utilizing a chair for their whole lives or who’ve had a gradual transition like mine, I’ve been discovering that while yes, it’s very different, it’s also incredible. I’ve had to be more innovative. Learn new ways of doing things. Discover things about myself that I never would’ve learned otherwise, like my love of writing. Finding amazing achievers in similar places to me that show me that I CAN do almost anything I want to do, and the things that I can’t, well there are so many new things that I can do, such as adaptive sports and wheelchair dance (HUGE thanks to the LA Rollettes for being incredible to me). To rediscover my love of art that I pushed aside because I “wasn’t good enough” and was better at physical sports. Now I’ve learned that I am ok at art, and most importantly, it brings me joy that I never gave myself time to experience.
So if you’re an adult, or anyone, adjusting to life in a chair...it gets better. It’s scary. It’s intimidating. But it’s also a new chance at an active life I would’ve given up had I not moved to a chair. A chance to jump back into what I love, and what makes me me. Don’t give up you. Don’t feel like you need to. Find the new you and keep moving forward. I choose joy, do you?