The Run In

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.

What's in a name?

A new day

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.