Here and now.

After a year and a half of undiagnosed symptoms and testing, in November of 2018 I was diagnosed with ALS. I really remember that day as a transformative one. One moment my doctor was dropping the weight of the world on my shoulders by telling me I have ALS, and the next I was alone in the hallway of a hospital searching for a way to manage my feelings. I started to think about the things I might end up missing: my kids’ graduations, their weddings. I might never meet my grandkids. And then something interesting happened. I took a deep breath and in that moment, committed to focusing on the here and now. Perspective hit me like a lightning bolt. I finally prioritized what was truly important to me. I knew what I wanted to do, who I wanted to be with and how I wanted to spend time with those I love. 

A friend and a companion.

These realizations helped me to see more clearly and gave me the courage to act on my love. Danielle and I had known each other as colleagues and friends for over 18 years. I wanted more, I knew she wanted more, and I asked myself ‘why are we waiting?’ I no longer wanted to hide those feelings, soI told her how I felt, she told me how she felt, and we have been together since. 

Once I started to better understand the realities of what I would face living with ALS, I told Danielle to run from me, as far as she could. My mom explained that this disease was going to get ugly. But the thing about how wonderful Danielle is, is that no matter what comes up she refuses to turn away from me. She told me that it would be much harder for her to be away from me than to stay by my side through it. 

I am now at a stage in my ALS where I have to be fed. When you are with your partner, and you are sharing a meal, and they are feeding you because you need that help, and it is consistent and it is every day and every meal, there is an intimacy there that I don’t think many people get to experience. It’s a next level kind of intimacy that I believe, without ALS, and without Danielle by my side, I could never understand. 

Despite ALS being filled with challenging circumstances, the love, intimacy and perspective I’ve experienced are so incredible. 

I couldn’t be prouder.

I thought about how ALS was going to affect my relationship with my kids, and it was difficult because they were life-changing points of life themselves; one at university, and one in high school. I didn’t want them to put their lives on hold for me. I’m determined not to let this disease define me, and I wasn’t going to let it define them, and none of us were going to let it define our relationships. My son still tries to wrestle with me, and we give each other a hard time, teasing each other as though nothing has changed. Seeing my daughter go off to college and grow up is such a treat. She knows exactly what is happening with me. She doesn’t take any time for granted, and realizes that it could be limited. We focus on making memories. And that is what has been important to us.

I am fighting it daily.

I think it’s important to share my experiences because ALS needs all the awareness it can get. Unfortunately this disease progresses fast in most people, and many of our voices go quiet before long. We need more advocates, we need more people to speak up so that others understand and are motivated to make real change. We need to comfort those in our community who feel alone or scared in their journey with ALS. So that people can see the human importance behind why we need to fund research. So we can fuel a desire to support the programs that help those of us who are living with this disease. 

Having ALS has really forced me to re-evaluate everything. And for me, it took that diagnosis to slow me down and put everything around me into perspective.

Why Giving Tuesday matters

Even with all of the love and support around me, this last year has been particularly challenging. But we’re a resilient community and we’re used to facing challenges head-on, aren’t we? That’s why I invite you to join me by marking next Tuesday, December 1st in your calendar right now for Giving Tuesday. Giving Tuesday is the single largest day of fundraising for ALS Canada. This year, an anonymous donor from the community has generously offered to match every online Giving Tuesday donation that comes in up to $50,000. This incredible offer means that even more funds will be raised this year, and even more impact from your gift will be felt across research, community-based support services in Ontario and advocacy efforts. Please mark Tuesday, December 1st in your calendars and give what you can.