I know it may sound like an insane question. How can the quest for freedom be a vanity exercise? But for many people, myself included, it has been an accusation thrown out in response for wanting things that may not seem like a big deal.
It's not a big deal for some. But for others, it's not being able to do the small things that make the biggest difference.
This came to the forefront for me after reading a fellow FSHers novel Wobbly Legs on a Firm Foundation. The author, Nia Stivers, talks honestly about her experiences with FSH, the perspective it gave her on life and her relationship with God.
Towards the end of the book, she talked about two operations she had, one for her shoulders (scapular fusion) and one that was new to me, a tendon transfer on her feet to correct foot drop.
When she spoke to her surgeon about it, he commented that she would likely have trouble adapting because she could no longer wear heels and since she was vain, she wouldn't be able accept that. She was understandably shocked. Sure, losing the ability to wear high heels isn't great. I myself find it very challenging to be stuck having to wear flat shoes when high heels are 'symbols of sex, status and style' and like it or not, it can help give a woman confidence.
But nevertheless, how stupid did this doctor think she was? Did he really think she was going to turn down the opportunity to walk without falling down because it meant no more Jimmy Choos? I am sure he was trying to make a point, but a rather poor approach if you ask me.
It reminded me I was told something similar when I was getting my scapular fusion. It was vain to want to get this operation to improve my looks.
Except that's not what I was doing it for.
I wanted to be able to wash my hair... Lift my arms above my head so I could get things off a shelf without asking for help... Feed myself without pain... Dress myself without feeling like a contortionist... Carry a child in my arms... Hug someone.
That last one, or the inability to do that last one, became abundantly clear to me at a FSH conference I attended. It was the first one I had been to and I was looking forward to meeting an amazing woman I had 'met' online on the FSH Society online community. She was coming, in her wheelchair, but she would be there and I would finally get to put a face to a name.
We had a great time, giggling like school girls and looking at the most handsome man, also in a wheelchair. He looked like a movie star. We were making up the most fascinating story about his life. It is one my fondest memories of her.
As we were leaving, I bent down to give her a hug and she looked at me, somewhat expressionless (FSH will do that do you) and said, "Sorry I can't hug you back. I can't lift my arms."
I thought of how awful it must be to not be able to hug her children, grandchildren or a friend. Not to be able to express her emotions in such a simple way. To those reading this and thinking, 'What's the big deal in a hug? Or being able to life your arms?' I say, try it. Try taking all those things out of your life, all those small things. Tell me if it doesn't make you feel like you are a prisoner in your own body.
In fairness, I know the doctor's sentiment in part comes from the fact that in the early stages, FSH doesn't seem to exist. You look fine to rest of the world. It is a blessing, and a curse, to not have the visible disability. Anne Harland articulates this in her video, Assumptions.
I hope you don't misunderstand this post. It's not meant to blame or shame anyone. Just meant to give some perspective of the importance of the little things.
