Stories like the one below from the community are so important and really help people feel connected to one another. Right now we are collecting short stories and messages of hope from people like you so that we can share them with the community throughout the holiday season. You can contribute here.

I always found it fascinating that no matter where you think you are heading and what you plan for, life has plans of its own. You have choices to make along the way, but in the end you are just a passenger. In 2007, my husband and I were living in England, and we had made some exciting plans to move to Canada. It was an opportunity for me to begin my career as a registered nurse, but as our time to leave England approached we received some terrible news.

My brother Andrew, my only sibling, my closest friend, was diagnosed with ALS. He was only 33 years old — full of life. I remember sitting down with him and telling him Canada could wait. I promised I would be there for him, right until the end. But Andrew wouldn’t accept it. He told me, “you staying here is not going to save me, you need to go.” My family and I left 2 months later. I felt horrible, like I was abandoning him. We had a special relationship, and I knew that my parents couldn’t care for him alone. After arriving in Canada I decided to put my nursing career on hold and I regularly traveled back home to be by Andrew’s side.

In 2010 Andrew got aspiration pneumonia and fell very ill. At the time, a volcano in Iceland had erupted and grounded all air travel between North America and Europe. Andrew died suddenly in hospital, and although I promised I would be there until the end, I never got the opportunity to say goodbye. The months that followed were very hard for me. It was hard to reconcile not having been there for Andrew like I had promised. During this time I realized that I wanted to be there for others who were living with ALS.

I became a volunteer for the ALS Society of Canada (at the time, the ALS Society of Ontario), and was paired with a woman in my town who was living with ALS. Once a week I would visit her, sit with her and we would talk. Shortly into the visits she asked me to help her with something very special. She wanted me to type up letters that she would dictate to me. Letters that would be left to her family and friends. She and I were the only ones that knew about these letters. She instructed that once the letters were completed, I was to put them in wax-sealed envelopes, and place them in a safety deposit box left to her family.

This exercise took two years. I can’t tell you how many tears I shed during that time. It was such an incredibly humbling experience to have been privileged enough to hear her inner thoughts, her experiences, her love and hopes for her children. She absolutely poured her entire soul into those letters.

In that time we wrote 23 letters. The letters to her children and her husband were the hardest for her. We went back and tweaked them often, she needed them to be perfect. These letters were exceptionally moving for me, as a mother myself, I couldn’t even begin to imagine what the thought of leaving her children behind was like for her. She was in her early 50s and very vibrant. She loved life and she wasn’t ready to die. These letters were her opportunity to share some words of wisdom, her memories of her children and of being their mother.

I promised my brother I would always be there for him. It’s been ten years since Andrew died, and for the last eight years I have dedicated my career to honouring my brother in my role as an ALS Canada Regional Manager. Now I can help people and families affected by ALS, as I had done for my brother and as a volunteer, by helping them navigate through their journeys. The stories of everyone living with this devastating disease are rich and wonderful. They are filled with so much love.

Join me in honouring those we love and those we’ve lost today by sharing your experience or memories with the ALS community. It only takes a moment to fill out and helps others going through similar journeys and emotions. I invite you to share your thoughts here.

 

Honour those you love by sharing your experience with the ALS community.

It only takes a moment to fill out and helps others going through similar journeys and emotions.

Share your thoughts today
Posted in: Stories