It's hard to believe its been five years since Grandy died. That is 1,826 days since my maternal
grandmother, Betty Anne Chapman, lost her 16 year battle to ALS. My Grandy was an extremely large part of my childhood. Some of my earliest memories take place in her Toronto apartment, and as she continued to get sick, we would communicate from afar through countless emails. As cliché as it sounds, Grandy will always hold a special place in my heart.
A lot has changed over the past five years. I started high school in a new country, I battled mental illness, I grew stronger mentally and physically, I traveled the world and experienced incredible places with incredible people, I graduated from high school, I had my first job and this fall I started college. When I was younger, the first person I would want to tell about my accomplishments was my Grandy. I would come home from school and send her an email filling her in on what I had achieved. All I ever wanted was to make her proud. Often I find myself wondering what Grandy would think of me now. I wish she could've been at my high school graduation. I wish she could've seen pictures of me at prom. I wish I could tell her the stories from my adventures. I wish she could see who I've become, because I think it would make her proud. I hope it would make her proud.
It's easy on this day to dwell on what ALS took from me; what ALS took from my family. It's much harder to be grateful on hard days. But here I am, giving it my best shot. I certainly am not grateful for ALS, but there are thanks to be given, even in this situation.
Thank you to Grandy's caregivers - Ruby, Ana, Zahera and Widad. Thank you for working day in and day out to take care of someone I loved so dearly. Being a caregiver isn't easy, it requires you to see people, no matter how good-hearted they are, at their very worst. It requires you to do the hard jobs, the messy jobs, the jobs that no one else wants to do. Thank you for taking on this role.
ALS is devastating, and the people it hurts most are the people who are the closest to it. Uncle James, Aunt Kate and Mom - you three had the unforgiving role of taking care of a parent. Thank you for all the three of you did to normalize our situation. Thank you for telling us stories and for helping us to remember a Grandy before ALS.
To the people who have donated to ALS TDI in Grandy's name - thank you for helping to carry on my grandmother's legacy. People like you make me believe that someday, families won't have to experience this horrible disease.
For the past 6 years I have participated in the ALS TDI Tri-State Trek with the team Crush ALS Team Bannon. This team has taught me so much about perseverance, courage and compassion. You have watched me grow up and have supported me in ways I never could've imagined. I can say with complete, and utter confidence that Chuck Bannon, John Rooney, Mary Rooney and of course Betty Anne Chapman would be so proud of everything we have accomplished together.
Dad - I am always in awe of everything you have done for the ALS community. Not only have you ridden a total of 1,890 miles for ALS research, but you have also raised thousands of dollars for the cause. Thank you for all you have done to bring people into the Trek community.
To my entire Trek Family - there are no words to describe how grateful I am to have met each and every single one of you. 6 years ago I was an anxious thirteen year old who was scared of losing her grandmother. You all made me feel loved, and for the first time I wasn't scared. Thank you for inspiring me to live bigger and to love deeper. Thank you for laughing with me, crying with me and of course for ringing cowbells with me. You all inspire me every damn day.
To the team at ALS TDI - thank you for the work you do every day to end this horrible disease. The work you do and the dedication you have to families like mine is truly unmatched. Carol and Colette, thank you for taking a chance on me. Your faith in me not only allowed me to grow exponentially as a person, but it gave me the most remarkable and fulfilling first job experience. The team at TDI gives me hope. Hope that one day soon we will find a cure. Hope that one day soon people won't have to lose their parents, siblings, children, grandparents and friends to ALS. Hope that one day soon ALS will be something we can say we beat, rather than something we are fighting.
So today marks five years. 1,826 days. It's been a wild ride, and a day does not go by where I don't think about Grandy. However, a day does not go by where I am not grateful for the ALS community that has made me who I am today.
ALS - we are coming for you. I hope you don't last another five years, because I am more than ready to say goodbye.