In Kelly’s Words – The Importance of Mentoring
There are a lot of assumptions you make after having a spinal cord injury (SCI) for both the person injured and his/her family and friends, both good and bad. But generally those early assumptions trend towards the bad: you’ll never be independent, never achieve the same things, never be yourself again (note: none of these need to be true!). And if you follow KBF’s social media (link: Instagram | Facebook), you generally see stories of people thriving. I’m glad we are able to showcase people succeeding after an SCI and I hope we’ve helped change a stigma you may have had.
I want to use this blog to pull back the curtain a bit on what’s important in those first few months and provide some insight into how hard that process can be. I don’t pretend this is an in depth look at a post-SCI journey, but I’d like to give some context into what it takes for someone to return to normalcy and accomplishment after an SCI. Because at the end of the day, perhaps our greatest contribution to the conversation about SCI is finding the right balance between being honest about the post-SCI while also combatting the stigma that less is expected of people with SCI.
The first thing is recognizing that the struggle to return to a normal life can be huge. Early on, getting to the right rehab, finding the right people with shared experience, and adjusting to a “new normal” when returning home take a big psychological toll on an individual and their support network.
I tell people that the first and most important step to having a successful recovery (and by “recovery” I mean getting back to life, not necessarily regaining movement or sensation) after an SCI is getting to a good rehab facility that specializes in treating people with new SCIs. This can make a world of difference not only because of how you learn to care for yourself and live in a chair, but also what you are exposed to and how you are shown what is possible. I honestly cannot overstate this importance. It is one thing to return home medically stable, it’s another to be set up to thrive in life in a wheelchair.
Next is finding someone you can talk to who also has an SCI. The shared experience is really important. It is so helpful to have someone who you can see living and thriving with an SCI and also be able to talk to that person and ask them questions. Even after leaving the best rehab facility, there are so many random little things that come up and having someone to ask is so helpful.
I really like to be that person, especially for other women. I love hearing the things they are working on and struggling with because, almost always, they are the same things I went through. Most often this is about things like getting your pants on or figuring out all of the bathroom stuff which, 14 years later, is still a mystery to me sometimes! Just knowing that someone else has gone through it and getting some tips on things to try rather than feeling completely alone can be so helpful.
As time passes after an injury people obviously figure more things out and need less “help”. But things continue to change and new issues come up. There are several women who, many years after their injury, I’m still in touch with periodically to run things by. Very often it’s to find out if they have ever dealt with something similar or heard of others who have. It is an extremely helpful network of friends and people with one very unique common experience.
Since starting the Kelly Brush Foundation I’ve met many women (and men too, of course) doing amazing things since sustaining an SCI. At the KBF we highlight these accomplishments because we believe that every story of normalcy or accomplishment changes someone’s expectation of people with SCI. It’s a hard balance, but we try to break down the stigma that a lack of accomplishment is “understandable” and normalcy is “exceptional” without diminishing the emotional, psychological, and physical effort the journey takes. See, it’s hard!
We use sports and active lifestyles to inspire the journey and accomplish good outcomes because they help set goals. You need to nail a lot of the other aspects of living (basic health, transportation, etc.) before participation is even an option. But sports are fun, good for you, and build community and identity. And best of all, with each positive example we’re changing societal expectations so that the journey won’t look quite so daunting for that next person who gets hurt.
Dylan and Nell Update:
A couple months ago I wrote about how Nell never liked to eat pureed food so we didn’t really give her solid foods until she was 8 months and she went straight to eating regular foods. Well now I can’t keep up with her eating – she will eat anything! I have yet to put something in front of her and have her not eat it. This includes chili, fish tacos, regular tacos, and any and all fruits and vegetables. It’s so great! I give her whatever we’re eating and she seems to love all of it. She sits next to me in her highchair so I end up being the one to put things on her tray and very frequently at dinner I will not be able to eat because she is eating food as fast as I’m cutting it up for her. When she’s still hungry and her tray is empty she just starts yelling, which we have actually found quite funny and now Dylan cracks up laughing whenever she does this which then makes Nell laugh, and then we all laugh more. Nell could certainly teach Dylan and thing or two about eating more adventurously but it’s been fun having at least one adventurous eater in the house. We are having a lot of fun in our house these days, I’m loving this phase with Dylan and Nell!