Grief is a topic that is often overlooked or neglected, yet grief is an experience that impacts people in a myriad of ways. As part of our mission which aims to advocate, educate, and support, we have identified the need for public education surrounding the grief experience. Several storytellers have shared their lived experience with grief for our blog – this is Sheila’s story. 

Tell us about the person who died. 

John was a 55-year-old gentleman living with ALS, he started as a volunteer at my hospice but eventually became my friend; a person who would forever open a place in my heart for the ALS community. He loved music, especially Led Zeppelin, and he loved telling jokes. He had a troubled life brought on by an accident in his early 20s that changed his course, but as his cousin mentioned at his funeral, a diagnosis of ALS offered a chance to experience healthy friendships, acceptance, and forgiveness. 

John died in a long-term care facility in 2017 with a bi-pap withdrawal; this was his choice. He planned his living memorial the night before on November 11, the day so many years ago when his accident happened. 

With ALS and its progression, the anticipatory grief played a role in helping me feel prepared and comforted that John had time to arrange what he needed to arrange. Not being immediate family, I felt more connected to supporting his wishes with more admiration and astonishment than sadness. 

Leading up to John’s death I was reflective. I thought of everything he taught me for four years. I felt relief for him that he was able to make this very difficult decision and was able to prepare. I was honored when he asked me to journey with him, along with his family, when the bi-pap was removed. 

Because of his sense of humor and his incredible resiliency, I was able to experience gratitude and relief when he died. He provided such a gift for me that every time I think back to our relationship; only fond, happy memories flood back. 

To cope immediately after John’s death, I listened to a lot of Led Zeppelin. I tended to the Money Tree he asked me to take care of. I spent time with my family, something John found very important to do, and I connected with his cousin and sisters. 

To cope now, I maintain relationships with his family. He is my mentor while I now help support people living with ALS. He is with me every day, making me smile. 

After John’s death, talking with a Community Lead from ALS Canada that we met at the support groups helped a lot. I also spoke with the Waterloo Hospice to help debrief and share my story. 

My feelings have remained very much the same as time passes. I initially missed our friendship, the routine of being able to dedicate myself only to one person for three hours a week for all that time, but I soon realized that he’s never too far to have a laugh with. 

I wish I had known that it is okay to take time to re-energize. There is an energy that is depleted when you are caring for someone, and to be kind to yourself when expectations may fall short for several months after. 

Is there anything else you would like to share with us? 

I chose to share John’s story because his death was appropriate to his life. I could redo this survey and focus on my mom’s death, and it would not have the same positivity and growth. My mom died first, and I wished for a lot of things to be different. With John, I was reminded that death can be something beautifully remembered and experienced; I focus on his as a sign of hope and aspiration.