Living with FSHD Muscular Dystrophy
Getting Uncomfortable, To Get Comfortable: Living with FSHD
Seeing something as a blessing instead of a burden, will change everything
Not Knowing The Truth
Growing up, I saw my grandfather struggle with FSHD Muscular Dystrophy. I watched him decline from being strong and active, to walking with braces, to not being able to walk up the stairs to his bedroom, to a wheelchair, to spending the rest of his life confined to his bed in the living room. I had no thought that it could be me one day. We never talked about the condition, my mother (his daughter) didn’t talk to me about having it herself and she was diagnosed at an early age, no one talked about anything.
I had a pretty active childhood. I played every sport, softball, basketball, volleyball, I loved being competitive. I was, and still am very strong, I pride myself on having a strong presence (like my grandfather). I think now about how hard that must have been for him, to be so active and depended on by everyone, to becoming helpless. He never complained, he was always grateful for my grandma taking care of him, I still remember him laughing. Reconnecting to his memory has brought me strength and peace knowing what kind of man he was and how he carried himself. When I started having difficulties raising my arms and it was getting difficult doing the things I normally did, I still had no idea what was going on. I remember being in the weight room for basketball (probably around 15) and barely being able to life the weight bar, I was so confused. I was strong, how could I not lift a weight bar? Still no insight from my mother that could address what was going on with me (the trials of being raised by a Narcissist mother).
My favorite things became harder, doing my hair was a chore, scrubbing cars at the car wash was draining my arm strength, I still had no idea. I was even going to cosmetology school in high school to be a hair dresser (luckily I was in a car accident and derailed that idea, everything happens for a reason) I also wanted to be a police officer (probably the worst professions I could choose having Muscular Dystrophy) I was going through life blind. I wasn’t prepared mentally for anything.
It wasn’t until I was in my early 20’s that I started to connect the dots. I still hadn’t had a conversation with my mother (who also has the condition) or been diagnosed. I somehow came to the realization that I had the condition.
Connecting The Dots
Once I realized what I was up against, I felt like I had to keep it a secret. I didn’t want people to feel sorry for me or think I was weak. I didn’t want people to think they could take me physically, I wanted to keep my image of strength and power. So what did I do to hide this, over perform.
I would push my body to the brink. I would run it down until it nothing left. I pictured my body as an old beat up pick up truck, I had the pedal to the medal, running it into the ground before it died on the side of the road (what a terrible way to think!). I wasn’t thankful for what I had, and still able to do, I was just trying to use all the strength I had left before it was gone. I continued this mindset until I started my self-discovery, right before I turned 40. I spent 25 years running my body into the ground not knowing or accepting the truth, that was valuable time I could have been taking care of myself, preparing for the future. I have learned from this and won’t make this mistake with my son, he will be prepared.
I married at 22 not realizing I married a “taker” and how that wouldn’t work with my condition. I never made myself a priority, I didn’t want to seem “weak” or incapable so I did everything. I never spoke about my pain. I wasn’t at peace in my life, my marriage or with my condition.
I Determined My Future
I realized living my life with a “taker” wasn’t going to be good for me or my children. At 27, with two kids and a condition, I got a divorce and tried to start living a more peaceful life. I was still working my body in overdrive and not sharing about my condition with any one I dated or made friends with, until I met my husband now, George.
I remember gearing myself up about a month after we met to tell him I had the condition. I wanted to give him the opportunity to run before he fell in love. I wanted him to make a logical decision based on what our future could be like, if he couldn’t handle it, we could end it before it got too deep (it was already too late). I told him about everything. It felt good to speak the truth, he was receptive and inquisitive. He made it seems like it was silly for even making such a big deal about it, that felt awesome! I had found a “giver”.
He’s ended up being my biggest supporter. Anything I want to do and try for my body, he supports. He is attentive to my pain, he considers where I am at physically before we do anything, he knows when I’m in pain just by looking at my eyes. He took care of me after having my scapulas fused to my ribs, twice. He was on board when I wanted to quit work at 40 to start preserving my body for our future. He was always pushing me to work for us and create a business so this aligned right with his vision. I can’t stress the importance of being with a “giver” (if YOU are also a giver), my life would not be the same with out him. Put this on your manifest board if your are looking for a life partner, friend, business partner... look for a GIVER, (not enabler) my husband was on my manifest board.
Before I turned 40 I decided this was going to be the best version of me! I quit work, I let my hair go gray (mindful, efficient living), I ended toxic relationships that drained me, I eliminated and managed my stress, I started eating less, I started being grateful for what my body was still able to do and give me. I started treating my body like precious cargo. My new purpose was to make sure my I was comfortable (physically) at all times, that’s the least I could do for myself. I got inspired, got into nature, started creating, I started to find my peace, this was some of the origins of MakeLifeanOccasion! 🌈
I have never seen myself being in a wheelchair or not being able to go and do what I want to do. I refuse to be taken down or stopped by my condition, physically or mentally. I have prepared my mind for the possibility of everything, but I do not live there. I know the more I am inspired, the more energy I have. I know, the more I am in nature, the better my body and mind feel. I know, the more peace I have inside, the less pain I have from stress and uncertainty.
I know my mind controls the outcome of my future. I am manifesting the life I desire. I surround myself with mindful design that inspires me to move forward in a positive, productive way. I listen to music that feeds my soul and influence my environment. I have gratitude for what I can physically do NOW, and don’t focus on what “I used to be able to do”. I found a sport that I can still be competitive and kick ass in, Ping-Pong! I create, because it brings me peace and happiness. I use my pain as a guide and adjust my body accordingly, I give it everything it needs to be as comfortable as possible. I am in tune with my feelings, emotionally and physically, I have become mindful. I know I wouldn’t be taking care of myself, living my best life, MakeLifeanOccasion!, if I didn’t have FSHD Muscular Dystrophy. I am grateful because I know life is about balance and the balance to my condition, is greatness.