For months after my injury I woke up every day hoping that it was all just a bad dream. There was always a brief moment of hope and possibility before reality hit yet again. It’s been a long time since I’ve felt that way; it’s been a long time since the fog of disbelief lifted. However some days I still wake up with that familiar feeling of ‘maybe it was just a dream’.
The feeling is ever so fleeting as that blissful half asleep state quickly morphs into full consciousness. But still I take a moment and doubt the severity of my paralysis. I manage to block out what has become ‘normal’ and find again the skepticism that I felt daily for so long.
Do they really not work at all?
I can see everything: my legs, knees, ankles, feet and toes. It all still looks like mine. It looks like they should work – they must work. And so I try to bend my knee; move my foot; wiggle my toe. I stare at my lower body as if eye contact has been the missing link all along. Sure enough, nothing happens. Yep, still paralyzed. I would have better luck willing my husband’s foot to move.
Once the non-functioning state of my lower body is once again established I do a quick run thru in my head. It’s like the movie 50 First Dates where Drew Barrymore has no memory and watches a home movie every morning to bring her up to speed on her own life.
So you had this terrible accident where you fell down a hole. There were ambulances and surgery. Then that moment you were told you would never walk again among many other things. Then there was rehab, living with your in laws and eventually moving back home. You now pee through a catheter and will live life as a paraplegic forever. All caught up? Great. Go on and enjoy your day.
And with that I’m up to speed yet again. Not a dream. Real life. Must live it.
But what does it mean to live it? Well if you hit up social media it seems to mean that you have to be exceptional and you have to push limits and prove to the world that you can achieve anything. That’s all well and good I suppose but it’s not for everyone. I have a bit of a different approach after a long year of internal debate.
Throughout my entire recovery process I struggled a lot with advice and expectations. Early on, all of my healthcare providers wanted to tell me exactly what the expectations were for my recovery at my injury level (T-11) which were mostly textbook and felt very clinical. Then there are the general population’s expectations of what it means to be in a wheelchair. Plus then I had my own expectations of my life and myself.
There was also a lot of advice, mostly unsolicited, about the best ways for me to move forward. I should pray (I did for a while), I should trust my doctors (makes sense), I should get second opinions (sure, thanks) I should try this alternative therapy (there are downsides), I should keep my leg muscles moving (oh OK), I shouldn’t keep my leg muscles moving (interesting), take the meds (yeah they help), don’t take the meds (oh right meds have side effects), God works miracles (apparently not on me) and my personal favourite…just tell yourself to walk (ha! yeah that should do the trick).
Then you hear the stories about that friend of a friend who walked again or the one who defied all the odds. There are motivation pages out there that encourage you to be epic and reiterate that you can do anything you put your mind to.
When I finally sorted through all of this noise, I was left feeling overwhelmed and confused. Most of it made me feel that if I didn’t walk again then I wasn’t trying hard enough or I wasn’t good enough. It made me think that the only way I could be happy was to be working towards this goal of complete physical healing. That’s when I decided to block out the noise.
I do not believe that I can accomplish anything I put my mind to. I have limitations. I don’t expect to walk again. My efforts and my time can be much better spent attempting to become the best version of my paralyzed self. And the best version of myself will just have to be good enough. Spending hours of my life working towards a very unlikely goal only leads to wasted time.
But why am I telling you all this? Well, someone asked me recently what advice I would have for someone who is newly injured. My initial response was to say nothing. After all of the time I spent mentally sifting through unwanted advice all I could think to say to someone else is to ignore everything. However after thinking about it for a moment I did have a few things to say. Things I will write here for someone who is searching.
- Find something that you love to do that is still easy for you – something that helps you momentarily forget. And in those moments that you feel sad or weak or helpless, seek out that thing that you love to do…because you can still do it and it still makes you happy.
- Don’t stick yourself inside a box of expectations. There were things that I imagined I would never do again after a just few short weeks of recovery. I have accomplished so many of those things that I had decided were no longer options for me. I just had no idea at the time that I would have the opportunity or the ability.
- Be kind to yourself and take things as they come. Don’t give yourself deadlines for your recovery. Having goals are great but allow yourself to work towards them with patience and grace for your limitations
Essentially my advice is to live your life in a way that makes you happy. Do what you need to do in order to be satisfied with yourself. Work hard and put in the effort to be the best version of yourself in whatever form you are in. Don’t worry about what other people are accomplishing, only worry about your own journey and what you need to accomplish to feel complete.
It’s not easy. There will be days you will wish it was only just a dream. There will be days you wake up and have to quickly replay your story before feeling ready to start your day. There will be hard days and days where you want to give up. And there will be times you fail…but as long as you keep trying then it isn’t really failure at all, just another chance to prove to yourself that you can survive.
I often wake up in the morning with a panic and then reality sinks in and I start the day … stopping expectations and just making the best of each day is what works best for me … plus not spending all day doing exercises to get no where!!!! I do exercise each day but limit the time to basics .. just rolling round a park could be my exercise plus I have fun too …. it takes time to learn what is best for yourself..
I wish my legs and lower body was like yours! I’d gladly swap places with you