After 29 years with a spinal cord injury, I’ve heard a lot of “helpful” advice. With the advent of social media, I read comments from well-intentioned people who say some of the following statements, or what I’m calling misconceptions. These are just my opinion, but I find some of these comments to be half-truths or outrights lies. Being on the receiving end can feel like a slap in the face.
- If you work hard enough, you’ll “get better” (i.e., walk)
As much as we do know about spinal cord injuries, there is still so much we don’t know. Will some people with a SCI walk again? Yes. But for most of us, probably not. Two injuries at the same level can present completely different. One might not have any movement or sensation below their level of injury, while the other may walk with assistance. Did one work harder than the other? Maybe, Maybe not. But rarely would the ability to walk come from simply trying harder.
- You didn’t want it enough
Unfortunately, I know people who have been told this. Well-intended family members encourage their loved ones that they just “need to believe” or “want” to get better. If it was that easy, no one would be seated after a month in a chair. Who wants bladder and bowel dysfunction? Who wants neuropathic pain or spasticity that takes your breath away? No one.
- Accepting my injury is giving up
I’ve heard the following question asked many times from people with newer injuries: “If I accept my injury, am I giving up?” I think it’s important to ask how one defines “accept.” If accepting your injury means giving up on life, absolutely do not give up. But if accepting your injury means giving yourself permission to live life to the full whether you are seated or standing, then go for it! Acceptance is a process and can take years. And that’s okay. But give yourself permission to live.
- You don’t have enough faith or didn’t pray hard enough (or worse – you did something to deserve it)
Ouch. Not only is this offensive and blames the person with SCI, it also implies that God can only use me if I am “healed.” I will argue that it takes more faith to live daily with a spinal cord injury than without one.
- Having an incomplete injury is better than a complete injury
Many incomplete injuries suffer from debilitating neuropathic pain. Yes, a person might be able to wiggle a toe, move or a leg, or even walk. But how functional is it? How debilitating is the pain?
- I can’t be healthy and have a spinal cord injury
Having a SCI doesn’t imply ill health. Yes, there are complications like pressure sores, UTIs, decreased bone mass, and increased risk of diabetes and heart disease. But I’d like to argue that some of my friends with SCI are more active and in overall better health than their able-bodied peers. We often understand how we need to stay active and are proactive, rather than reactive with our health.
- Years of physical therapy and occupational therapy are required
I’m not belittling the importance of therapy.I was in outpatient PT for about three years after my injury and every few weeks I still see an occupational therapist to keep my shoulders in good shape for the long haul. But I truly believe that there comes a time when living life – getting dressed, cooking, transferring working, volunteering playing recreational or competitive sports – is so important. Continued physical activity out of the rehab environment puts you in real-life situations you can continue to learn new skills and increase strength and endurance.
Be happy with who you are and find it within yourself and not based on what others are saying—They do not know you or your circumstances and everyone is different—just like they are in an AB world.
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The opinions and experiences presented herein are for informational use only. Individual results may vary depending on your condition. Always consult with your health care professional. This individual has been compensated by Bard Medical for the time and effort in preparing this article for BARD’s further use and distribution. BMD/BMDA/1018/0721