Navigating through unintended consequences of SCI

Beware the unintended consequences of spinal cord injury. We must look after our mental health and well-being

We have some superb columnists writing for Rolling Inspiration and have covered many topics regarding health within spinal cord injury. Recently, a good friend of mine, a quadriplegic of almost 30 years, took his life.

No explanation given. Such a sad ending to his wonderful and active life. Nobody would have thought it possible that he wanted to end his life.

I lost another good friend, a paraplegic of almost 30 years, as a result of pressure sores and eventually septicaemia. Another a life ended far too soon, especially one so active.

I tried to get my head around why? I do not have the answer, but I want to share this thinking and at the end of my column callout to all of us with spinal cord injuries to give attention to our mental health and well-being. They are our nemesis, not our broken spines.

Whether we have broken our backs or our necks, the result is that we are wheelchair users and people see us as such. We suffer the indignity of being stared at, our unacceptable terminology.

We are seen as a homogeneous group and people see us as confined and bound by our wheelchairs. Clearly, we are not. You need only read some of the inspirational stories in Rolling Inspiration to know that.

We are often defined by our hardware. Very few people see the unintended consequences of a spinal cord injury.

It is so important for everybody, including ourselves, to understand that our challenge is not the navigation of our wheelchair, but rather the navigation through the unintended consequences to make sure that these don’t get us down, don’t create risk, and don’t affect our mental health and wellness.

The list is long and in no particular order of inconveniences severity: bowel routine, bladder management, sexual function, temperature control, risk of pressure sores, autonomic dysreflexia, spasm, pain, breathing difficulties, societies judgement, prejudices and perception, financial devastation, loss of friendships and relationships, inaccessible home, inaccessible public infrastructure, inaccessible transport, caregiver management, disability discrimination, reduced or no chance of employment, wheelchair parking abuse and crime risk. I guess load shedding now too. This list encompasses not only physical health risk, but mental health issue stimulants.

These are our nemesis of our coping or not, our frame of mind, our ability to integrate, our future, our lifestyle choices, our ability to get work or a career or return to work, to remain in relationships or get into relationships.

We are often complemented about how brave we are, how cheerful we seem to be, and how well we seem to manage, but sometimes behind the facade or the poker face are underlying issues that we need to face up to and ensure that we conquer.

I have often stated that walking is overrated, and I can say that with a bit of a smirk on my face as I have been using a wheelchair for 39 years. But it is the unintended consequences that are a daily grind and can get to your head and your wellness.

Explain this to your loved ones and allow people to dig deeper into our well-being. Sometimes we are too proud to expose this or talk about it ourselves.

Let’s talk more freely and openly about these unintended consequences. This might be the secret to our longevity.