The Man Who Walked After A Spinal Cord Injury and His Gift of Grief

For the past fourteen years I’ve worked in spinal cord injury (SCI) research. It’s actually how I got my start in sexual health. The first study I worked on was “Cardiovascular Responses to Vibrostimulation for Sperm Retrieval in Men with Spinal Cord Injury.” In this study performed at the BC Centre For Sexual Medicine, men with varying levels of spinal cord injury ejaculated to a high powered clinical vibrator while their beat to beat heart rate and blood pressure were monitored.

Individuals with SCI are at risk for a condition known as Autonomic Dysreflexia (AD) which is a life threatening rise in blood pressure when there is a stimulus below the level of their injury that is not usually deemed to be painful like a full bladder, a pin prick or having sex. Symptoms such as a pounding headache, nasal congestion, flushing, heart palpitations, chest pain, anxiety, profuse sweating and lightheadedness are common. The treatment is to remove the stimulus; empty the bladder, the bowel or stop sexual activity. If that doesn’t work, then medication is necessary.

With this research we learned quality of life lessons like the more frequently a man ejaculates, the less likely he is to experience AD, which was pretty cool. We also learned of something called “silent AD” whereby the patient didn’t experience any of the symptoms of AD, but their blood pressure soared above 200mg HG nonetheless. In other words, they had no symptoms to let them know that their blood pressure was rising along with their risk of stroke and/or death.

You’re probably thinking, isn’t the ability to walk most important for individuals with spinal cord injury? Yes, it is important but other priorities emerge. The inability to walk can be overcome through the use of wheelchairs, ski poles and more recently the robotic exoskeleton. It might come as a surprise to learn that for individuals with SCI, bladder, bowel and sexual function are more important than walking with the exception of those with quadriplegia who place improved hand function at the top of the list.

Initially, individuals with SCI are devastated at the thought that they may never walk again. They aren’t even aware at the early stages after SCI, that bladder, bowel and sexual health are impaired and what that actually means over the long term. What it means is leaking urine, or the need to empty one’s bladder with a catheter for the rest of their life and/or a bowel program that may take 1-5 hours 3-4 times a week or that sex is a whole different story. It’s not the end of a sex life, more so the beginning of new exploration, contraptions and devices! Dare I say it can be more playful and pleasurable!

Recently I went to test a newly enrolled young man who’d sustained an SCI. As he lay motionless, monitors beeped, machines supported his every breath, IV’s dripped and a tube continuously fed him through his nose into his stomach. He enrolled in our research study to try and help……anyone.

Unable to speak, my patient mouthed the words, “I don’t want to be in a wheelchair for the rest of my life.” My heart broke. I could see he was desperately frightened having no idea what his future looked like.

Recovery from a spinal cord injury depends on the level and completeness of the injury. The higher the injury on the spinal column the more deficits are to occur. Whether the injury is complete or incomplete matters as well. Complete injuries result in a lack of motor and sensory function below the level of injury. With an incomplete injury as was the case with this young man, there may be some movement and control over muscles below the level of the injury. There was hope but his life as he knew it would change.

I tried to comfort him by telling him optimistic stories about other SCI patients I’d followed over the years who recovered in their own ways and went onto live full lives working, engaging in sports, having relationships and families. This just wasn’t cutting it. Men are visual creatures and I needed to show him vs. tell him.

I then recalled a TEDx talk by a man named Mike Shaw who’d sustained a spinal cord injury and walked to talk about it. I showed this young man the TEDx talk on my iPhone right then and there because I wanted to give him some hope.

A smile came across his face as he watched in amazement and listened intently to the man who walked on stage to deliver his TEDx talk after a spinal cord injury. My patient was visibly moved and I was overcome with emotion, tears streaming down my face, paralyzed in that moment. Mike Shaw I am forever grateful for your gift of grief.

To hear this very moving talk about one man’s journey after a spinal cord injury, click here:

Ref:The health and life priorities of individuals with spinal cord injury: A systematic review Lisa A. Simpson, BSc,1,2 Janice J. Eng, PhD,2,3,4 Jane T.C. Hsieh, MSc,5 Dalton L. Wolfe, PhD,5,6 and the SCIRE Research Team