At 21-years-old, I flipped a truck four times while driving on an Illinois highway. Had someone asked me to describe myself on that April morning, prior to that moment, I would have said some combination of: young, adventurous, athletic, friendly and motivated. At 30-years-old, I will still say the same, but due to the injuries I sustained, I am also: a wheelchair user with a spinal cord injury.
Similar to many others I've met in this situation, I am neither sad nor angry. And as more time passes, it has become increasingly apparent that what I want most in life might not be evident from where I am sitting.
I am often asked the most difficult part of living with a spinal cord injury, and my answer is always the same: it robs me of time.
In general, our society does not know enough about spinal cord injuries -- in fact, I freely admit to being the same way prior to my accident. At best, our perceptions are formed through the most convenient of examples: select entertainment characters; designated ramps, automatic doors, and parking spots in our neighborhoods; or possibly, a personal connection to someone affected by paralysis. But these, particularly the formers, do not tell the whole story.
The loss of autonomic functions -- not simply the inability to walk -- robs people living with paralysis of time. The ongoing management of body temperature, sexual function, bladder and bowel shave hours off our days; sometimes full experiences from our lives; and if ignored, the possibilities of far more permanent loss.
The fact is paralysis alone will not kill me. The secondary conditions of paralysis, especially without steadfast management, can kill me, and, because an injured spinal cord struggles to communicate with the brain to operate a host of bodily functions most of us take for granted --too often, they do contribute to death.
Time is not on our side.
If this sounds like uncharted territory when discussing spinal cord injury, I understand. Explaining that I cannot walk is not terribly difficult because you can see it with your own eyes. Explaining that my body cannot regulate temperature, sexual function, bladder or bowel, without some combination of supplements, medication, equipment, and strict timetables, that's more difficult to understand given the general public's current level of awareness.
A lot of folks don't want to discuss the graphic details of acts that happen in the bedroom, or the bathroom, or the act of perspiration seeping (or not seeping) through your skin. Yet, no one can deny the important roles these play in daily experiences and personal health. For most people, these actions are simply a part of daily life, but for many people living with spinal cord injuries, these activities never stray far from the forefront of their mind.
We never fully conquer secondary conditions. We manage them.
This management, of course, comes at great cost. In the pursuit of healthy and active lifestyles, people living with spinal cord injuries are forced to invest significantly higher sums of time and money for a shot at opportunity. Through the months and years, the numbers start to pile up. The effect of secondary conditions becomes undeniable.
Please don't mistake this as a story for sympathy or praise. I still contend that I have more in common with most everyone reading this message than I do different. However, there is no benefit in denying that it takes me longer, costs me more and strains my body greater as the time passes.
This September is Spinal Cord Injury Awareness month but that alone doesn't educate the public, only open and honest conversations -- although personal or uncomfortable -- will expand awareness and understanding around what it truly means to live with a spinal cord injury. My hope is that we better commit ourselves, in the months ahead, to these conversations. In a perfect world, we all dream of getting up and out of our wheelchairs but right now, I imagine most of us also dream about reclaiming control of our bodies.
This is the hardest part of living with a spinal cord injury. I look forward to a day the answer changes -- not a day I can return to the life and body I had prior to that April morning nine years ago, but rather a day when people living with spinal cord injury, including myself, enjoy greater opportunities and enhanced abilities -- so lets use the time we do have to begin anew.