Getting Uncomfortable, To Get Comfortable: Living with FSHD
Seeing something like a blessing instead of a burden will change everything
Not Knowing The Truth about Autoimmune Conditions and Healing
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 solid 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 become 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 usually did, I still had no idea what was going on. I remember being in the weight room for basketball (probably around 15) and barely lifting 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 hairdresser (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 profession I could choose to have 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 talked with my mother (who also has the condition) or been diagnosed. I somehow realized that I had the disease.
Connecting The Dots in Self-Discovery
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 believe they could take me physically; I tried 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 like an old beat-up pickup truck; I had the pedal to the metal, 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 was still able to do; I was 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.
How Self-Love Determined My Autoimmune Condition Future
I realized living my life with a “taker” wouldn’t be suitable for my children or me. 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 my situation with anyone 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 allow him 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 interested. He made it seem 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 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 constantly pushed me to work for us and create a business that 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 without him. Put this on your manifest board if you 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, let my hair go gray (mindful, efficient living), ended toxic relationships that drained me, eliminated and managed my stress, started eating less and 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 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 began 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 influences 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 to 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.