Posted by Friends of FSH Research on Nov 9, 2020
by Asifa Lalji
We are living in some pretty challenging times right now. COVID has made everyone rethink everything we do including the things we take for granted every day.
People with disabilities know this all too well. People with FSHD have to re-invent, readjust and course correct over and over again throughout their life. Each adjustment feels like a loss. Like with any loss, you experience all the stages of grief over and over. And, just like with the loss of someone you love, it's not just the person, it's the memories and the impact they had on the people around them. What will life be like without them?
It's my 49th year with FSHD and no matter how much you know, you never know what you want to know. The progression of the disease, the impact on your life, the impact on other people's lives - it's a new surprise around every corner.
Recently, I hit a new milestone in my FSHD journey - losing my freedom to dress the way I want.
It may sound vain or silly to care about having to adjust your fashion sense. But, it is so much more than that. I knew it, so I had been avoiding it for a while.
I had already thrown out all my heels when my legs became unstable and stairs were getting harder and harder. I had very few dresses because I had started to fall and didn't want to give any more 'free shows' as I tried to get up off the floor. And, a couple of years ago, I got rid of all my power suits when I had to stop working.
My closet was getting awfully cluttered and I really hate clutter. I grew up hating clutter being trained by the most organized and clutter-free mother ever. Everything was always clean and everything always had its place. She came over for lunch the other day so I thought her no-nonsense approach would be just what I needed.
We got out boxes ready and I pulled out the first outfit. A stunning beaded salwaar khameez which is a traditional outfit in South Asian culture. They are generally custom fit, if you wear it right. I used to be able to wear it right. Now the pants are too restrictive, and the hourglass shape no longer fits my classic FSHD Popeye arms, always pregnant belly, broad shoulders (post scapula surgery) and shelf booty (AKA lordosis), just to name a few of my new body norms. I thought this would be an easy outfit to lose. But, my mom had the same memories I did: oh this is so beautiful what a shame to lose it. Remember your aunt bought this for you from India and you wore it to this wedding and that wedding (I have a massive family so there are always weddings). Remember how many shops we went to get matching jewelry and shoes?. Remember we drove to Edmonton for a week and we did this and that with the family. You looked so elegant in it..."
Yes, I remember. I remember it all like it was yesterday.
But today, not only can I not get the outfit zipped up, it's hard to look elegant while in a wheelchair trying to hold the weight of your body up.; I can no longer do my hair the way I did because I can no longer get up from the chair at the hairdresser. The wedding venue wasn't accessible. Something I took for granted back then, but am keenly aware of now. I wouldn't have participated in any of the cultural events, or led any of the dances today because I would basically fall flat on my face and break a few bones while I was at it. I struggle applying makeup and would not have been able to do my younger cousin's hair.
As I kept going, every outfit I tossed became another bittersweet step in this never ending journey. Grateful for the chance to have the memories, be blessed with the outfit, the family and the wedding in the first place. But, sad that I won't ever get to do those things again.
I started going faster and faster, going through the clothes and the memories like a movie on fast forward.
My mom finally cried out (by now there were full on waterworks going on for both of us) "Stop. Stop being so angry."
But I was angry, frustrated and sad watching this reel of the years of my life, memories of travel and dancing and working and shopping with friends, touring family around town, all the events I planned and ran.. it was all behind me and I couldn't see what was ahead. I wasn't throwing my clothes away, I was throwing my dreams, my passions my goals away. Worst of all, I was throwing my hope away.
On top of it all, I was destroying a piece of my mom during this process. When she is not in denial, she is living every loss along with me.
I'm a fairly positive person. FSHD makes it's 'host' strong, resilient, creative, and many other things that I am grateful for. But, there's so much loss over and over again. Sometimes it's hard to keep hope alive.
As always, there is something serendipitous that happens in moments like this that make me get up off the floor. This time, a message from Terry at Friends for FSH asking me to pen something for an upcoming newsletter.
Then I remembered how people like Terry and Rick and so many others are there to keep the fires burning, to keep that hope alive. I've met many donors, researchers and other people part of the FSHD family throughout this journey. Sharing this common goal of finding a cure helps me to keep living my best life, and not just existing.
Without that commitment, determination and curiosity of this complicated genetic condition. FSHDers would all have empty closets with no hope. So thank you, to everyone who touches the FSHD world to offer support, time, generosity and brilliant minds. With you, we know all things are possible including a cure.