I’m going to rip this Band-Aid off. Here’s a video of me walking. The absolutely most difficult thing for me to share. I hate videos of me walking because it shows a disabled person and that’s not how I feel. For years, I have avoided having my picture taken with my scooter, canes, or walker because those were “temporary” tools and “I won’t need those for forever”. Newsflash: maybe they are here to stay. Disability is a strange thing. I may share a disability with someone, but not their diagnosis. Anyone affected by an outward disability hears the same unspoken question, “I wonder why she walks like that.” (And I’m sure it’s never phrased, “What’s wrong with her?”) Here’s my explanation on why she walks that way.
First, a 91-word anatomy and physiology lesson. Muscle groups sometimes work in pairs: when one side contracts, the other relaxes. Quadriceps straighten the knee and hamstrings bend the knee. Calf muscles point the toes and the shin muscles lift the toes. Sometimes muscles work as a group, like hip flexors that flex the hip during the swing of a step. The large and small muscle groups work together to control balance and locomotion. Voluntary and involuntary muscle action is controlled by the nervous system. This is a very simple explanation of an incredibly complex thing we call walking.
Second, a 75-word explanation of multiple sclerosis. “Sclerosis” means scar. Think of nerve cells like electrical wire. The wire, or axon, is what transmits the current; the coating, or myelin, creates a protected channel for the current. In MS patients, myelin is attacked by the immune system; think mice chewing on the electrical wire. The chew marks eventually scar. “Multiple” scars result in the nerve cells transmitting faulty or missing information. These scars are in the brain and on the spinal cord.
My mice have wreaked havoc on my electrical circuits. As a result, the signals to the voluntary and involuntarily muscles used for walking are all out of whack. Spasticity is when muscles get a strong message to contract, but not the same strength signal to relax. I am most affected by spasticity in the large muscle that extend my knees and point my toes. The muscle pairs begin to work against rather than with one another. The counter muscles can’t overpower the spastic muscle. To compensate, I swing my legs outward from my hips. The little muscles in the foot and ankle responsible for balancing are powerless against a flexed quad and calf and result in poor balance. Over time, unused or underused muscles become weak. Just like damaged electrical circuits, somedays my body works better than others. My circuits are more damaged on my right side. Upsides: it is not painful and I CAN walk!
I wrote this explanation because I overheard a lady say to her friend, “Why do you think she walks like that?” I found it strangely cathartic to write this for a person who will never read it. I also am not offended by her innocent curiosity. As someone who is disabled, I find myself wondering the same of others sometimes.
There are two kinds of disabled people: those who own their disability and those who let it own them. I’m the former. I can find appreciation in my circumstance. Walking this way is fatiguing, I have learned to pace myself. I am independent to a fault, so I am learning to ask for help (…sometimes, it’s a work in progress). I have learned to appreciate that I have lots of tools, from my canes, to my scooter, to a stranger’s offered arm. In the world where we can always use an uplifting story and it’s so easy to complain about the bad stuff, I’d like to share my good stuff and how I find positives in the bad stuff. We’ll see how it goes.
Veronica Gogan - Para Equestrian 