At long last I got to visit my friend Mark and his family last week.
You may remember him, we introduced you to Mark, his wife Asmaa and their daughter Veronica about two years ago when we invited them to join us at the ALS research lab at the University of Toronto. If you don’t remember, here’s a link to our past blog post.
Mark lives with ALS and it was super important to me to be extra careful when visiting Mark during the pandemic. I have been double vaccinated now for a number of months and now that Mark’s family has been vaccinated, we were happy to finally see each other.
It was a beautiful day and Mark and I got to catch up sitting outside in his back yard. Mark is able to navigate his motorized wheelchair outside himself with the help of his caregiver and a ramp to a shaded back deck, where we watched Veronica play in the pool with her friend.
Many of us take being outside during the summer months for granted. When you have ALS there are a number things to remember. Is there a ramp to help exit the home? Is there a flat surface for the wheelchair to sit on? Is there space that is protected from the elements?
Even with Mark being able to visit with us in his back yard under a big umbrella, Mark could not utilize his eye-gaze machine to converse with us. There was still much too much glare on the screen for it to work outdoors! (I’m still trying to think of ways to fix this! Let me know if you have ideas of your own.)
So, how do you have a conversation with someone who cannot speak?
You share your thoughts a couple sentences at a time –
You wait for them to respond, in Mark’s case, through the blinking of his eyes.
You guess at any questions they may have and elaborate as necessary.
Sometimes when I visit with Mark, I am reminded of my brother Christopher. Christopher was unable to speak about three years into his battle with ALS and he did not utilize an eye-gaze machine for a long time. I got really good at guessing his needs… But having a conversation was totally different.
Back inside Mark and Asmaa’s home, we were able to have a more fulsome conversation – which included Mark poking fun at Asmaa and I as we enjoyed watching some of the Olympic events.
The hopefulness and perseverance Mark has is enough to brighten anyone’s day. I am so grateful that Mark and Asmaa welcome me into their home and their lives. It is for Mark, and my brother Christopher, that I continue to tell people their stories, about ALS, and why I do what I do.
It may sound cheesy, but every August I take the ALS ice bucket challenge.
Why?
Because that little viral sensation made huge inroads for ALS!
Because the ALS ice bucket challenge raised almost 200% more funds for ALS in a few months than was ever raised before!
Because the funding that was raised resulted in a MUCH greater pace of discoveries for ALS and this still continues to do this day!
The power of social media is real and I will continue to raise awareness for ALS and funding for the disease to find a cure in my lifetime.
Anyone can help – you don’t even need a friend or brother with ALS to do so.
Watch and share this year’s ALS ice bucket challenge video or make a donation today, your future self will pat you on the back!