My crutches were a source of anxiety about not looking ‘normal,’ until I learned to let go by just holding on to them
When I fell several months ago and couldn’t get up under my own power, I knew it was time to let go. Or rather, time to finally grab a hold.
For the first 26 years of my life, I could walk on my own with confidence. But on that day, as I propped myself up using the bumper of a car and a mailbox, I realized that was no longer the case.
When I first started experiencing symptoms of muscle weakness, I sulked about my situation and wondered why I was allowed to be normal the first 22 years of my life, only to have my hopes and dreams dashed by this disease.
Every time I fell, I wanted to roll over and shout at the top of my lungs, “I’m a normal guy! I swear! I’m just like youuuuu!”
Yet, deep down, I knew I wasn’t.
An evil voice
Not many people start out their lives with full ability and lose it all in their mid-20s. Instead of gaining muscle mass and being in peak physical condition, I was watching my biceps and arms gradually shrink until it became difficult to lift a gallon of milk.
Despite these changes, I resisted getting Lofstrand crutches because I wanted to cling to looking “normal” as long as possible. The last semblance of normalcy I had was my appearance. Aside from a heel-oriented gait, which I could hide, you wouldn’t know anything was wrong with me. I avoided staircases and physical activities like the plague, so as not to showcase what I couldn’t do. It was as if an evil voice inside my head was mocking me for needing an assistive device. I felt like I was in a haunted house surrounded by mirrors that warped and distorted my perception of reality. You are different, Chris. If you get crutches, you will never enjoy life again.
Even though I knew I needed them, I felt embarrassed. The notion that “looking normal means being happy” clouded my decision-making. It literally took not being able to get up to finally see the light. I had to get them.
I reluctantly purchased a set of crutches as if I was knowingly making a terrible mistake that I couldn’t stop.
The first couple days I used my crutches I was miserable. Walking down the street, I tensed up when someone walked by me. Are they staring? Why are they looking at me? Was it because of the crutches? I had mentally prepared myself to stare back at those I felt were looking at me condescendingly. A couple times I wanted to shout at those not looking straight ahead. I anticipated the humiliation of needing people to get up for me on the subway so I could sit down, as if I were elderly.
I felt like a monster. I was mad at my situation, mad at the world. Why couldn’t I be normal again? I felt like a prisoner in my body.
I was in a very unique situation, and had every right to be frustrated — but that was no excuse to turn into a curmudgeon.
Reluctantly, I gave in and began to use the crutches at all times. With the crutches as my white flag announcing, “Yes, I am different now,” I expected to get all sorts of condescending stares. I hardened my heart in anticipation of fighting humiliation with anger.
But then a funny thing happened. Those stares never came.
Now, yes, in full disclosure, they happen occasionally, but I’ve found that impolite stares have been far outweighed by the other faces I see — namely, those of people willing to help. Although it took a long time to get used to accepting seats on the subway, now I am heartened by the generosity of the act itself.
Instead of humiliation, I feel gratitude.
Something to lean on
Now that I’m not full of anger and humiliation, I can actually enjoy the fact that the crutches have been quite stabilizing. They’ve returned to me a peace of mind that I didn’t think I was ever going to feel again.
It’s sad how unnerving it is not being able to get from point A to point B without obsessing about logistics and fearing that you are going to fall. Worry doesn’t leave much mental effort for other things that should be occupying one’s thoughts. Most importantly, the people I care about most in my life — my friends, family and co-workers — don’t see the crutches at all! I had worried all this time about what the people I knew were going to think when I got them. It turns out that no one really cared. It was a huge relief. Instead of bringing the crutches to work and hiding them in the corner sheepishly, I realized they could just blend in, like a coat on a hanger. I’m still the same person I was before, and that’s all that matters to the people I care about.
In retrospect, it’s amazing how much mental effort, stress and anxiety I wasted on what should have been an easy decision.
I’m not oblivious to the fact that there are always going to be people out there who are going to stigmatize me, whether intentional or not. It’s inevitable. I also know that these crutches may not be my last stop on this ride to disability I’m on.
I’m different by default in that I use crutches while the vast majority of the population does not. This is just a fact of life. What that means, though, is up to me. I can choose to let that difference brand me and stigmatize me, or I can use it as a lens to see the goodness of those around me.
It’s still hard to adjust to the fact that I need crutches. But when I’m around people who don’t even give them a second thought, or when I am the recipient of some act of kindness that I may not have initially wanted but have since learned to appreciate, the crutches do a funny thing.
Christopher Anselmo, 27, of Boston, Mass., learned he has Miyoshi myopathy (a form of muscular dystrophy) at age 17 and began experiencing progressively severe symptoms at age 22. A 2008 graduate of Northeastern University, Chris is currently a senior analyst at a video analytics company in downtown Boston, and regularly blogs about life with MD on MDA’s Transitions Center.