That’s why I’m here, and you too. All of us who’ve gone through a severe injury have a ton of knowledge to share with the newbies of the world. From real-world PCA handling to something as simple as sleeping in your bed again, things are going to be a smidge different in real life than what they tell you in rehab. Read on for five things they don’t tell you in rehab.
Try to find a PCA you’re not related to: Kind of like how you shouldn’t borrow money from family, you shouldn’t let them care for you either, at least not on a regular basis (if possible). In rehab, they tell you family can learn how to help, but don’t let them. Once in a while is fine, but the best long-term relationships can be broken because of non-stop caregiving. It’s a high-stress job. By doing this you’re showing real love.
Mobility products break. Be prepared: In rehab, they’ll order everything you’ll need to be independent once you’re home, but they always forget one big thing — to tell you to have a Plan B if anything breaks (and boy do you learn this the hard way). Whatever your must-haves are — a wheelchair, walker, an automatic bed — have a backup. Get a manual chair, a loop ladder, a used wheelchair on eBay, whatever you can. And choose a repair shop before leaving the hospital too — and put their number in your phone.
Things will not be the same: The build-up of finally going home is so great, and everyone in rehab is so happy for you, they forget to mention life will be vastly different once you’re home. In my situation, I felt like a ghost re-visiting my past. The cozy home atmosphere was replaced with reminders of my able-bodied self and even worse, there were new challenges everywhere I looked — so many things I could no longer do. It’s a long road finding normalcy again after an injury; just be prepared you may not find this in your physical home.
Prepare your body for the future: Another thing they fail to prepare you for is readying your body for all the fun secondary conditions you have to look forward to. Long-term UTIs and the possibility of antibiotic resistance, wounds that can’t heal, drop-foot, heterotopic ossification (a condition where flesh is turned into bone), osteoporosis, joint contractures; they allude to a lot of these things, but boy do they skim over them. I ended up with scoliosis after my injury, four years post. If they had warned me sitting the way I was would lead to this, I would’ve definitely improved my backrest from the get-go.
You will find better solutions than the “experts:” They always act like they know everything about your disability in rehab, and maybe they do, but they do not have an injury themselves usually, which limits them in a big way. The best solutions for people with disabilities always come from someone who has a disability themselves. You need to experience it in full technicolor; you just do. Once you’re home and living your life, your mind will dream up solutions galore. You’ll see.
To say it’s “hard” adjusting to a disability is more than an understatement — it’s really one of the most epic life challenges anyone can go through. Things do get easier the longer you’re home however, and a big part of it is doing your own research. You are only as informed as you make yourself. The tough part is just learning some of these the lessons the hard way — trial and error (oof. so not fun).
What did YOU figure out on your own after coming home?
