This is a moment of vulnerability.
Asking for help has never been easy for me. In 5th grade, I failed a math exam because I was too afraid to ask my teacher for help with writing the answers down. In 6th grade, I performed poorly in a typing class because I was too proud to admit I needed help typing. In 8th grade, I peed in my pants during a field trip because I didn’t want to ask the nurse to help me use the bathroom.
Throughout most of my life, I’ve stubbornly attempted to ask for as little help as possible. But why?
Having a disease like SMA makes me almost entirely dependent on others for my comfort and survival. From the very beginning, I’ve needed help with the most basic daily tasks—itching my eyes, taking a shower, having a sip of water.
Needing constant help has occasionally led me to believe that I’m useless. My method to counteract this nasty feeling was to avoid help whenever possible.
A few years ago, I began having issues with holding my head up. The muscles in my neck had weakened to a point that made it challenging to keep myself upright during any sort of movement. This problem came to the forefront in the van, where repeated stopping, starting, and turning whipped my neck around like a rag doll. I’d arrive at my destination in immense pain.
Common sense would tell you that this was an easily solvable problem—find a way to stabilize my neck during car trips—but my inner fear of being useless, my fear of letting my disease control my life, made it hard to accept that I needed help.
So for a few years, I kept quiet about the pain and let my head fling around in the van.
It took a few spectacular neck injuries to finally realize I needed to stop being an idiot and ask for help.
One of my friends came to the rescue with an idea: what if you wore a neck brace in the van to hold your head up? She brought one over, and we took the van for a spin. It was such a beautiful feeling to simply enjoy the ride and not worry about my head falling over.
My dad once told me something that has been on my mind more often lately as my disease worsens and I find myself needing help with more activities. He told me: “Asking for help doesn’t make you any ~less~ of a person; it allows you to reach your fullest potential.”
One of the biggest reasons I created our equipment granting program is because of that exact idea. Having proper adaptive and medical equipment is a huge help in life for people with muscular dystrophy. We want our organization to be a place where asking for help is not a negative thing, but rather, an opportunity to expand and maximize potential.
But in order for us to continue building and improving the vital service we offer, we need everyone out there to join together to help us achieve our goals. You can do so by visiting the page below and making a contribution to our campaign! Sharing this post is also a great way to help us reach more people.
Slowly but surely, I’m getting better at asking for help with the things I need in my personal life. It isn’t easy, but it helps to know how much support I have from the people I love.
Thank you so much for your never-ending generosity.
Campaign: https://igg.me/at/OTzs7YTgMNI
Photo credit: Fire Rock Productions