The common perception is that the greatest struggle disabled people (those on wheelchairs) have to contend with, is their challenges with mobility. While immobility seems like the most obvious thing that we struggle with, it is not the only thing. You cannot solve all the problems of a disabled person with a wheelchair. There are hidden syndromes and complications that are synonymous to spinal cord injury survivors, but we rarely talk about them because sometimes we don’t understand what is happening in our bodies.
Nakuru is the only town I truly know. This is strange especially coming from a young male who is fast approaching his 30’s. I should at least be familiar with where Westlands is but as it turns out, I am clueless about all places that are not my hometown. At the age where young men get out of the nest and explore new exciting places beyond their mothers embrace, I was stuck in my mother’s embrace, fighting for my life. You see, I wasn’t always disabled, I enrolled my membership to the wheels club after being involved in a nasty accident while in my early twenties. For most of the weeks and months that followed, I was in my bed; thinking about the only town I knew, past friends who were now estranged and most importantly forcing myself back into the equation.
The first time I went back to town I was met by prying eyes, heads turning, whispers and chatters about my skinny arms and thin legs; the spotlight was basically on me because my disability was making too much noise. During times like these, however, it’s hard to be bothered by prying eyes because I have more pressing issues like to think and worry about.
Once you experience significant trauma to your spine causing damage to the nervous system, lots of things about your body change. For instance, my body has no ability to regulate its own temperature; this is referred to as thermoregulation dysfunction. After the occurrence of spinal injury, damage is experienced on the part of the brain known as the hypothalamus. This is the part that is responsible for regulating body temperature. When it senses internal temperature of the body becoming too low or high, it sends signals to the muscles, organs, glands, and nervous system to respond in a variety of ways to help return body temperature to normal. This can be achieved through sweating or vasodilation.
Effects of these extremes in body temperature can be quite significant. When exposed to high temperatures for too long, I start to have trouble with my breathing, I go from taking small breathes through my nose to heavy deep breathes through my mouth. I was once talking to a friend of mine in town and we stood under the sun for a minute too long. Suddenly I couldn’t breathe well and that led to instant feelings of fatigue, dizziness and blurry vision. A normal person would sweat it out and be okay but for us, you need to self-regulate the temperature by either using a wet cloth or taking off your clothes. In the areas below the level of injury, my body barely sweats when it is hot, and rarely shivers when it is cold. By the time my brain recognizes a change in temperature, it is often too late, and I end up either freezing cold or way over-heated. Sometimes I experience autonomic dysreflexia, a dangerous, emergency response to unsafe internal temperature.
Autonomic dysreflexia is a syndrome in which the body experiences a sudden onset of high blood pressure. This condition is mostly common to people with spinal injury. It is characterized by heavy sweating, low heart rate, pounding headaches, goosebumps and nausea. These are the body’s way of passing a distress message. It could be due to extreme internal temperatures, pain or discomfort below the level of injury. Normally, if you have an itch on your leg, information is sent from the brain to the spine, all the way to the muscles. Since our spines are broken, the information doesn’t flow as it should. The body, however, finds alternative ways to pass this information.
In my case, having no feeling below my armpits means that if my belt was tied too tight, I wouldn’t be able to feel it, if I wore a small shoe that was hurting my feet, I wouldn’t feel that either. The body sends me signs through sweating, rise in blood pressure, headaches, goosebumps, nasal stuffiness…This lets me know that something is wrong.
When we are not worrying about our bodies overheating or severe headaches being caused by a tight shoe, we explain spasticity. I could be seated with a group of friends talking about girls and money we don’t have, and my feet will burst into involuntary movements. People often mistake this for a miracle, and I have to calm them down and explain that spasticity is a form of muscle overactivity that occurs when communication between your brain and spinal cord is disrupted by a spinal cord injury. My spasms are most notorious in the evening after spending too much time seated in one position. They cause some level of pain and discomfort depending on how severe they are. I have friends who have fallen off their wheelchairs after experiencing such spasms.
Complications associated with spinal cord injury are tough and they are meant to make life harder than it already is, but we always thrive through it all. As I write this, the left side of my face and neck are drenched with sweat, I have goosebumps the size of tomato seeds on both my arms. My bladder is emptied, and my shoes are well fitted. I have no idea what is causing it but until I find the root of the problem, my day will continue being sweaty and uncomfortable. Such is life. Here is the next instalment of my story From Stairs To Ramps: Mgonjwa Hana Haya
Brian Muchiri is a passionate writer who draws his inspiration from the experiences in his own life and of those around him. He is candid and he seeks to inspire society to be more pro active and vocal about the social issues that affect us. Brian is also actively involved in pushing for awareness and inclusion of people with disabilities through his foundation; Strong Spine.