I haven't written in a long time, which isn't to say I haven't been thinking about it. I have been thinking about a lot of things as I slowly and desperately try not to slip too far down this mountain I've been climbing.
Having FSHD is such a long and twisted journey. In fact I've come back to this draft in 2022, realizing I started it in 2018.
Time passed quickly during covid and it's a good reminder of how quickly you can go from stable to not. It always feels like your muscles are progressing faster than you think. If someone had asked about how long my fast progression has been, I would have said 2 years. But, clearly it's been more than that.
One FSHD researcher describes the progression of FSHD like a rope that's being cut thread by thread. The thing people don't realize, is that with every thread that's left, you consider yourself still mobile. It's that last thread. When that last thread gets cut, that's when you feel like it happens fast. You don't feel all the other threads that are being cut. It is the difference between being able to do something and not. No one likes, 'not'.
In the last five years, I've gone from walking with a walker when needed, to being in a wheelchair part-time and not being able to walk without assistance.
It might have taken 50 years to get here, but it doesn't feel like it.
I remember the look my friend Ann gave me when we talked about FSHD. When I met her, she was already late in her progression and in a wheelchair. This of course does not in any way describe her spirit which was very robust. I was at the beginning of my diagnosis and journey into FSHD.
Like many people who are diagnosed in their twenties and have mild symptoms, we think we can beat it. We think we are going to be the ones with the mild progression who can fight it through exercise, supplements, naturopathic treatments or anything new that shows promise. Ann looked at me in a way that was knowing, but she wouldn't let on. No one wants to break anyone's spirit or bruise anyone's hope in any way. But she knew how the journey would go, because she had already been there.
I'm sure she would be very optimistic by the research and investment that has been made toward a cure for FSHD. We have come such a long way from where we were 30 years ago when I started my journey.
Until that time comes, I will continue with whatever comes up that I am still able to do (like yoga, meditation and getting out as much as possible) while having the humility that is on me now. This part of the journey is all about keeping the spirit whole. It is sometimes the most difficult part when having a progressive degenerative disease involves being in a perpetual state of mourning.
It's a lesson in managing expectations and the ability to adapt. It's a lesson in learning how much is out of your control. My new mantra is 'live.learn.accept.adapt.repeat.' I'm still in the game, even if it's on the sidelines. I'm still moving, even though it's slower. I'm still happy, even though I am sad sometimes. I'm still looking for new passions, even though they are in unexpected places.
Inhale courage and exhale fear. Remember,
'live.learn.accept.adapt.repeat.'
Until next time... and there will be a next time.
So this is an appropriate day to post something on love and FSH.
Love and relationships are hot topics on FSHD online groups and chats. I think we all feel having FSHD is a guaranteed bad luck charm on love. I know I have used it as a reason for failed relationships and not following my marriage time line. I recently realized it's not always the FSHD. It's just the way love goes.
I read a wonderful article from Kristin Duquette on love and being disabled (http://www.mobilewomen.org/2015/02/im-disabled-20-something-and-believe-in.html?m=1) We have as much love to give as anyone else. But we often forget we are worthy of the same love.
Not sure if it is my personality or the disease that made me feel unworthy of being loved. I think those with disabilities feel like they are not whole, including their hearts. Which of course couldn't be further from the truth.
It's another journey we face and God be with those brave enough to stand by those of us who take awhile to figure it out.
On this Valentine's weekend I got engaged. It is still sinking in. It's becoming apparent that being loved is as much about loving as letting yourself be loved.
I find it overwhelming.
Not just the love from the brave soul who signed up for the FSHD adventure with me. But, the honest love from those people in my life who I have shared this news with. In a world so jaded, cynical and crazy busy, I feel I very real love and happiness channelled to me.
I'm trying to take it all in. It's scary but I find I am enjoying feeling 'young and in love'. It's nice to have that feeling of love without the memory of heartbreak and pain. It's nice to not worry about how the FSHD might impact the relationship. It's nice to just enjoy the moment and let it all in.
On this Valentine's Day I wish you all (especially my FSHD champions) a world of love from all those around you and more importantly, the strength to allow yourself to be loved.
Last weekend, I bumped into my ex at a party for the daughter of a mutual friend. I hadn't seen him "face to FSH" in a couple of years.
He knew about my FSH when we were dating and was the relationship in my life when I was in the "should I risk passing on FSH to my kids? Should I have kids?"
At the time, I hadn't yet experienced the depths of FSH progression. Even though we all know it's a progressive condition and everyone tells us it's going to get worse so prepare yourself, I still thought I could "will" it away. Mind over matter...pray... have faith... miracles happen... this is as bad as it gets... All good sentiments. But, FSH is totally on it's own agenda. (Reminds me of the saying "if you want to make God laugh, make a plan").
He was of the view it would be selfish to have a child who could suffer because of my decision. I wanted children so much. It was one of the few things I knew I wanted from as early as I can remember. I had a big extended family so I wanted at least five kids.
But, God had a different plan.
We spent a lot of time catching up on each other's lives. He asked about my FSH of course, and how it was progressing, what I was doing to deal with it. Given I had my walker with me, it was hard to avoid the elephant in the room!
In the years that followed our breakup, and sidelined plans of marriage and kids, I realized we weren't so different.
We both had good jobs, our own homes and our own challenges and successes. We both got married to other people we loved. He had his two and a half year old at the party and I had my stepson, niece and nephew there, so we both had the family we craved and I had as much fun and joy with my kids as he did with his. Probably more because I got to sugar mine up and send them back to their other homes!
In the end, it reminded me that things may not work out the way you plan, but they will always work out in the end.
Last month I reached a new milestone in my FSH journey, a power chair.
After falling a number of times in a very short walk, my legs turned to that familiar jelly feeling and I couldn't stand. It took a couple of days before I could stand again but the feeling of vacancy in my body would stay, as would the fear of never knowing when I would fall again and why. I was at the mercy of the unpredictablity of this disease.
For many of us, the ability to find solutions and new ways of doing things gives us a feeling of victory. Every small victory over this disease is huge.
So I can't fix my legs, which feel like they are shredding at a rapid pace, but I can keep my independence a little longer with a power chair.
It's quite a humbling experience to see your reflection while you are on one of these. Forget looking sexy or elegant. Your flesh spreads out in the middle, you inevitably lean to one side or slouch, often you can't keep your legs together and getting through elevators and doorways are a performance.
Like so many people with disabilities, the frustration around the lack of accessibility and awareness of our every day reality, is bubbling up.
In fairness, people with disabilities take a long time to come out with their condition. They often believe their differences are an annoyance to others. They..we.. believe we don't have an equal voice or equal worth to others.
But we do.
As I crawl back into my solutions based instinct, I have learned 1 in 7 Canadians self identify as having a disability. By 2036, that number will grow to 1 in 5. Yet, the solutions offered by government, business and community leaders are still too basic, far too narrow in focus and lacking leadership and innovation. Creating an accessible and inclusive society is still not enough of a priority.
Barrier-free cities and universal design are not new ideas. They have been around since the 1980s. Yet the work being done is still around basic accessibility, like government buildings and services being accessible. Really? In 2017, that's what government considers leading the way?
Clearly, we are still decades behind on getting where we need to be. But my hope is our voices will become stronger. The only way to make change is to speak up, be heard.
Every voice makes a difference.
I'm writing this, lying in bed for the sixth week in a row. Once again, humbled by my FSH. This time, a fractured bone and a fractured spirit.
While I deal with the realities of the disease, I would normally be grateful for getting away with a minor break and the ability to work from home. Possibly even steal away some time for last minute wedding plans.
But I find myself dwelling on the fact that my latest fall practically had people around me walk over my blob of a body. They probably thought I looked ok so I must be ok.
Or the guy who pushed me out of the elevator because he was in a hurry. He probably thought I was just there as another hindrance from him catching his bus, not that I was walking slowly because I was petrified of losing my balance and falling again. So terrible that he might have been late.
Is it me or are there way more people who are walking looking at their phones, no regard to the people they are knocking over. A quick 'sorry' but please, I need to return this text.
Or those who don't think I am fun because I can't play sports, or do all the things that they do so easily. They think I should toughen up. They say if my mind and spirit is strong I can do anything.
I used to say that to people, but now I know your attitude can't fix what's wrong, only how you handle it.
I wake up trying to inspire, trying to lead, trying to be strong, trying to help others. But, I am getting tired of my own rhetoric and others are tired of listening to me explain what I am going through.
Maybe I need to give myself a break, we all need to do that. With a stressful job, health issues, financial challenges and a wedding to plan, re-plan and re-plan. I think I will take the time to reset my goals or maybe move the goal posts a little.
