Writing, cooking, buttoning buttons and the always fun balloon toss — we learn and do a lot in rehab after a debilitating injury. They try to squeeze in as much as possible (which isn’t easy with insurance cuts). And they try to think of everything that might come up, but this is a far-off dream — preparing us for every little thing is impossible.
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?
A Major thing we figured out quite quickly is there is little to none of the assistance you need to make your home accessible. Also to even have a wheelchair accessible vehicle. NO ONE or NO Organization actually helps you acquire a vehicle or the modifications needed.
We had to use garden hose and a make shift shower stall for at least a year. Then I used a bed-side commode for almost 3 years before having an accessible bathroom where I could close the door, have privacy & actually flush. No one prepares you for not having the help, assistance, funding to make life livable in your own home. They just advise you on what NEEDS to be done. Hallways, doorways, counters, entrances, exits, closets, even yards. Who wants to be stuck inside 24/7? Not me!! Lets not forget about how they stress to you in therapy the need fo home therapy. Thats another financial crunch. If you want room or equipment to help stay healthy–you need to be rich. My injury was not one where we receive compensation in any way, and we have lots of family but no one even thought about a fundraiser or even HOW we were going to make it.
Denial is a HUGE thing and I do believe being positive and accepting your new life can be a hinderance in the way people feel they don’t need to help in any way. Its been almost 5 yrs since my c5-c6 injury and since then I have not been able to visit not one family member–NOT one has accessibility. I have not driven since we cannot afford the modifications or the vehicle to do modifications on.
There is SOOOO much you just cannot be prepared for. Finding a bathroom where my husband or caregiver can go in with me in next to impossible. So outings are affected. Going with my daughter on the train to the city to check out a college—NOT happening. Reaching something in the frig–or the cupboard or even turning on the stove–all has to be altered. So many people as well as myself take life for granted–the way we are USE to living our lives. When you have quadriplegia you learn things about your new body–daily. No one can prepare you for it only help you along the way.
I’m still wondering how any other spinal cord injury survivor does anything in a manual chair. Ive had to use mine, which was given to me so its not a custom chair–the damage it does to your shoulders, wrists and hands is incredible. How does one fix dinner or carry a cup of coffee or even pick up the house when everything has to be balanced on your lap. I don’t know about others but I deal with severe spasms/tone/clonus and nothing is safe on my lap.
I’m not one to complain or dwell on my new life, I try to be positive and share how my faith has gotten me through–but others just have NO idea of all the limitations I/we as a family endure daily. Life can go on after a SCI, takes time not only to accept, adjust but to learn who you are and what this new body of yours is all about.
When I had my staph infection in Dec 08 that caused my SCI I had my youngest in 5th grade, my twins in 8th grade, my oldest daughter just trying to figure out what to do after HS and our oldest son (mentally disabled) just getting involved in vocational programs. My husband had only been home from Iraq for 2 years and he was diagnosed with PTSD as soon as he had returned. He hasn’t worked since. Hes a Blessing beyond words. I miss those days of dropping my kids off at school, I wont get that back. But you know I am here, I get to see them everyday, and watch them grow and change.
I’m happy to be alive and my time here is short so we make the best of all of it. I feel I could help others I just have anxiety issues talking in front of them Ive been told to start a blog to make an income–dont know how to do that either. : ) Well maybe I can help someone here. God Bless ~Melinda~