FSH Society Ambassador Carden Wyckoff recently created a series of posts on Avelist regarding misconceptions and living with FSHD. Below is her latest post on living with muscular dystrophy as she hopes to open minds and bring awareness to the various types of disabilities people live with on a daily basis. For more articles, please click here for Carden’s website.
“I get many questions in regards to the way I compensate to carry out certain tasks or just general muscular dystrophy questions. This post gives light to that. MD affects everyone differently. I personally have FSHD, currently am not in a wheelchair but use assistive calf braces.” Carden Wyckoff
Living with Muscular Dystrophy
I look down at the floor when walking bc I have to analyze what I’m stepping on and determine if it will trip or help me.
I am constantly scanning my surroundings. Because of this, I am hyper sensitive to detail. I notice things others don’t. You see that tiny bug on the wall? What bug? Exactly.
What type of table and chairs are in restaurants? Are the chairs sturdy? Arm rests? How will I get out of the chair? What things can I brace for support to get in and out.
I’m all about proximity.
Where is the closest accessible entrance? Where is the closest bathroom? How far do I have to walk? How far is the handicap parking from the entrance?
When it rains, I spend a solid 5 min wiping my feet on the rug when I walk inside somewhere due to the possibility of slipping.
Large department stores/malls/grocery stores are not my friend. There are crowds and the potential for people to knock me over by accident. Everything is also really far away. Sometimes the electric scooters are out of service or taken. I’ve looked to care.com for people to run errands for me.
When someone says “hey let’s go here.” Hold up. Wait a minute. I have to do serious pre planning/stalk it on google maps. What is the accessibility of the place?
I fight for change. Those two steps going into the restaurant? Yeah those need to go. So, I either talk to the restaurant owner/manager or take it up with the government.
One year I could do something or perform a physical type of task. The next year has no telling.
I am the queen of problem solving and out of the box thinking. Oh you bet your bottom dollar I’ll figure out a way to get that 50 pound bag up the mountain. I’ll figure out how to get up off the ground when I fall down.
I compensate. My type of MD affects primary my upper body and I can’t raise my arms over my head. How do I do my hair, makeup or put a shirt over my head? That wall/counter/towel rack/shelf/dresser are great places to prop my arms on.
I lean against walls for support.
I like tall chairs because they are easier to get out of.
Hugging people is not my forte.
My typical friday night consists of watching netflix and chilling lol.
I’m in physical pain 24/7. I look to acupuncture/stretching/meditation for relief. Mind over matter.
I am a practical thinker, planner, go getter and analyzer. I’m beautiful, charismatic, tall, petite, sarcastic and feisty.
MD does not define me, but it is apart of me. It is a platform for me to create change bc my muscles are withering away.
Please don’t feel sorry for me, I don’t want your pity. Help me raise awareness.
I am hella stubborn and don’t take no for an answer.
Because my physical health is subpar, I require my mental health to be stable. Meditation and mindful thinking is a glorious thing.
I wear calf braces to help with my foot drop. They pick up my feet to reduce tripping. Thus, I don’t wear heels and my options for finding shoes is an adventure. Steve Madden men’s shoes and converse are my life.
I have a thick shell, and am 1 tough cookie. I’m used to the stares, the weird looks and the pregnant questions.
There is no cure…yet. That’s why I’m applying to grad school to find one.
If you know someone with MD– ask them FIRST if they need your help. Help out with the little things like bringing in groceries or opening a door or lifting something heavy.
Ask us questions! We all are different and have our little quirks and ways for compensation.
Not tooting my own horn or anything but I’m probably the coolest person you will ever meet.
I just graduated from college and thankfully never had to help people move out of their apartment.
I like my floors flat and my stairs with elevators.
I know a lot of people. Having MD has given me the opportunity to network. I talk with researchers, community members and head administration frequently.