Updated: Jun 13
Did you know that in Sri Lankan superstition when it is raining and sunny at the same time it means the foxes are getting married? Or that setting a broom upside down beside your front door will rid an unwanted house guest? Or that Tuesdays are a bad day for moving houses or making big life decisions?
My friend, Deepal, an extraordinary man, taught me all of this and so much more. Not only was he my boss (he would cringe if he heard me call him that because he was more interested in collaboration, acceptance, friendship, and being equals), but he was also my greatest teacher in life, and most recently, in death.
Early last year, Deepal was diagnosed with Amyotrophic lateral sclerosis (ALS), a brutal neurological disease where muscles slowly (or in Deepal’s case, not so slowly) waste away, kind of like being buried alive with your thoughts in a body no longer able to communicate or move. Within a few months of being diagnosed, Deepal lost his ability to speak. A few months after that, he could no longer walk. This man who loved to sing, had only the past videos his wife had (fortunately) persuaded him to record to prove it.
When Deepal first told me of his diagnosis, I couldn’t believe it was true. This vibrant, seemingly healthy, brilliant man of only 55 years was told he had less than two years to live. He was obviously devastated and didn’t want to see anyone because he was ashamed of the deterioration that was already happening in his body.
By the time summer arrived, Deepal was being assessed for Medical Assistance in Dying (MAiD). I still hadn’t seen him since his diagnosis and kept asking if I could come visit, but he repeatedly made excuses about why I couldn’t. One day, refusing to accept his excuses any longer, I drove to Deepal’s house and showed up at the door unannounced. Thankfully, he was happy that I did, and it ended up being one of the best decisions I have ever made. Love is about showing up, and that’s all I knew how to do for this man I loved so dearly, so I just kept showing up. For someone like me, who was used to dealing with death and hardship by running away, those visits were of the richest quality and some of the most memorable moments of my life.
At first, unsure of how to act, I tried to beam all my love and shine my light so brightly for him, thinking that this positivity would help to brighten the darkness that was overtaking him. Soon, I realized that in doing this I wasn’t honouring his feelings, and perhaps I was even making him feel worse – the opposite of being the great friend I was striving to be. I came to understand that what he really needed was someone who could sit with him in his misery and uncomfortable feelings, someone he could cry with and who would hold his hand without judgement when he felt defeated and depressed. I aimed to be this kind of friend to him for his remaining time, and I feel so fortunate and grateful to have had that opportunity.
His family welcomed me into their home as communication and mobility became increasingly difficult. Deepal had a writing tablet that he would use to painstakingly write each word in attempt to communicate, and I couldn’t help but be amazed at his quick sense of humour that continued to shine through, even in his darkest hours. He could no longer talk, but he could still make jokes somehow.
At the beginning of December, with a full, cold moon lighting up the sky and Deepal about to lose all mobility (he was now standing and sitting with assistance to eat and spent most of his days positioned lying down on his side), Deepal decided that he could no longer endure another day of this awful disease, and asked his wife and son to take him to hospice where he would prepare to have MAiD performed. His family obliged, but the suffering he saw from his loved ones who were not yet ready to say goodbye caused him to change his mind. He postponed the procedure, setting a tentative date for mid-February.
Over the next few weeks Deepal persevered in hospice, pushing through each day with incredible determination. He was stubborn. He refused to have a feeding tube inserted, opting instead to continue enjoying his wife Chandie’s Sri Lankan purees until the very end. A man who never complained and tried to see the good in everyone, he continued to practice patience and acceptance in the last weeks of his life. Even when the food services staff kept sending the wrong order, upsetting Deepal’s stomach, his wife, son, and I were angrier than Deepal was. Each swallow had become so immensely difficult and each day alive an intense struggle, an upset stomach from food was the last thing he needed. Yet he continued to push on while waiting for his loved ones to come to terms with letting him go.
Looking back now, I realize that it was during these three weeks in hospice that I entered the bargaining stage of grief. I suggested Lion’s Mane mushroom as a potential for nerve regeneration and psychedelic therapy for end-of-life grief after talking with a friend who is a psychedelic therapist. Because Deepal practiced Buddhism, psychedelics were in contradiction to his religion; yet I still wonder if psilocybin would have helped him in his feelings of depression and grief, had he been open to it.
I’m not sure any of us ever got to the point where we were “ready” to say goodbye to Deepal, but we tried to support him the best we could in his decision to access MAiD. As much as we would miss this beautiful man, watching him suffer any further was unbearable.
And so began my next stage of grief: acceptance. On December 29th, Deepal’s wish to end his suffering with the help of MAiD came true. When the doctor arrived with her equipment, she explained the procedure with compassion and patience. There was no rush, she said, and once everyone had said their goodbyes and were ready, she would first give Deepal a sedative to put him into a calm and relaxed state before administering the concoction that would eventually stop his heart from beating. There would be no pain or discomfort, he would fall into a peaceful slumber and stop breathing when his body was ready.
Saying goodbye to him that morning was the most difficult thing I have ever had to do. I just had to keep telling myself it was the right thing to do and the only thing left to do for this man who had given so much in his life. A man who endured three extra weeks, putting his needs and wishes aside to give his family more time with him. A man who exemplified how to live in a more kind, accepting, and meaningful way. A man who showed me it is possible to die peacefully and without fear. A man who taught me how to honour the wishes of the dying and how to be a better friend and human being.
Deepal will forever be my pal, my greatest teacher and mentor, and the best research director there ever was. While I was saying goodbye, I promised to continue to remember him, be there as a support for his family, and honour his memory. I also asked him for permission to share his story. By this time, he could no longer give a thumbs up, so I said, “blink once for yes, and twice for no.” He blinked once, giving his blessing to raise more awareness about ALS and the amazing life of this wonderful man.
Following Deepal’s death, a small ceremony including his Sri Lankan community, family, and coworkers was organized and three Buddhist monks travelled from Vancouver to attend. Everyone wore white clothing to symbolize their grief and hope for the departed, and there was an altar set up with photos of Deepal, a statue of Buddha, candles, flowers, and fruit. Combined with the meditative chanting from the three monks, the ceremony was such a beautiful, peaceful, and healing way to honour death. If only everyone could have Buddhist monks at their funerals!
Since June is ALS awareness month, I encourage you to spend some time researching ALS and sharing what you learn with others in hopes of bringing more awareness and insight about this devastating disease. The ALS Society of BC organizes an annual “Move to Cure ALS” where teams can sign up to fundraise and “move” by either walking, running, rolling, supporting, or simply being present.
Our team is called “Deepal’s Dandelions” and we hope to continue this yearly tradition as a way of coming together to remember Deepal, supporting people and families living with ALS, and furthering ongoing research through Project HOPE at UBC. Perhaps the next time it is raining and sunny at the same time you’ll think of Deepal and the foxes getting married and how precious each moment in this life really is. Perhaps maybe you will even get the opportunity to see how beautiful death can be when you truly honour the wishes of the dying. There is so much to be grateful for in both life and in death.
If you are a Death Doula interested in expanding your knowledge of MAiD and how to best serve clients who choose MAiD, you can register here for HHA's next MAiD and the Death Doula workshop on June 24-25 from 9am-5pm EST.
Erin Van de Water is an HHA death doula candidate with a special interest in MAiD and ALS. This blog post was respectfully submitted with permission from Deepal's family. You can reach Erin on Facebook at https://www.facebook.com/erin.vandewater.3