Having a physically impairing disability such as FSHD can be really tough to deal with. Between the progression of a disease like FSHD, loss of abilities alone is enough to bring even the strongest of spirits into a crumpled heap of grief and sadness.
When you just can't get your body to do what the human body is capable of, when you have challenges with walking, lifting your arms above your head, puckering your mouth and smiling when you are happy, when seemingly easy movements become near impossible to do, like a high five or a thumbs up, it can be easy to understand the devastation to ones state of mind.
I had spent a very long time hating my disease. Before I myself had become affected by FSHD, before I myself experienced the continual weakening of my own muscles, and the subsequent loss of the ability to do the things I loved, and then the loss of strength and stamina to maintain a regular lifestyle of independence, and before I myself became a person who utilizes a wheelchair, I hated FSHD.
I watched as two previous generations of my family lived, and fought, and struggled, and some who have now passed on, progress and deteriorate mind body and soul because of FSHD Muscular Dystrophy. And these days we know that all persons of four generations of my family have this disease. Including my daughter.
Let me correct myself. I LOATHED FSHD Muscular Dystrophy.
There wasn't anything more I hated than this. Worst of all, I knew what I was in for, what my daughter was going to be facing. And that's without harshness of our society and the oppressive cruelties of bullying and discrimination.
Internally, FSHD has been THE hardest things to cope with. When your mind and your body know what it's like and how it feels to perform and complete physical tasks, the burn you feel in your legs when your hiking a trail and the adrenalin rush of reaching the finish line of a race, or the sensation of the wind in your hair while riding a bike, you feel like an alien inside your own body that simply won't respond to command.
It almost feels like the drifting apart of the link between your mind and your body. Kind of like the signals of a space probe. That link between my mind and my bodies abilities just keeps getting weaker until one day you can't remember when the last time it was that you had contact with that physical aspect of your life.
I hated that one day my body too would be "offline" while my mind remained in tact. I guess another way of comparison would like a waking coma.
It was only after a lot of hating and anger and frustration of loss due to FSHD progression, that I was able to come to terms with what this was beginning to mean to me.
My introspection's of FSHD led me to an epiphany.
I realized more than ever that one of the gifts FSHD has provided me is prospective proof of my own soul and that my body is indeed only a vessel that is housed within it. The essence and energy, that is me.
For the weight of this revelation to truly sink in, one must understand that my previous statement wasn't given by a particularly religious woman.
In fact, I do not have any official or non-official religious affiliation what-so-ever. I'm not an atheist either, I do hold my own faith, spirituality, and beliefs. I'm more inclined to believe that God and religion is a personal experience, individual to each person, and to be practiced as one sees beneficial to their own unique and individual lives.
Once this hit me, some how all that anger and loathing I had held towards my families disease seemed to fall away. I had also realized that FSHD was no longer a condition, or a terrible thing that my body had no option but to endure, FSHD had become more than that.
FSHD had become this horrible boogie man from nightmares. Looming in the back of my every thought. FSHD had become an entity and an energy of it's own. It even had a mean persona, stepping up its torment it reeked on my body every now and again via progression gaining itself sick delight in my loss of abilities.
That's when I also realized that that is how a person becomes consumed by their disability. The FSHD boogie man was beginning to envelope me inside my own body, trumping my own spirit and will. It was time for me to re-establish myself within myself.
Our bodies are our vessels that contain our energy, our souls. Vessels we are in charge of filling with beautiful moments, positive experiences and personal enlightenment's towards finding oneself.
FSHD gave me the ability to see beyond a body, and the scars, and flaws, that can mark and alter our shells.