Recent Experience with Death

Recently I had an experience with death that has left a lasting impression on me that will not leave me anytime soon. I found that my being Deaf is a significant factor in the experience because there are communication issues that arise. Since then, I’ve thought more about the circumstances of my own death.

The recent death experience that I had has to do with my close friend’s partner of 27 years, Bill, who was in his 70’s, overweight, diabetic, asthmatic from heavy smoking years back, and had been on a health decline for quite some time. Two weeks prior to his death, Bill was diagnosed with full blown cancer and would not be receiving treatment. It was decided to transfer him to the palliative care unit to make him comfortable. He deteriorated rapidly on a day to day basis. At first he was still cognizant and his usual self, then he was in and out of consciousness, and that progressed to him seldom awakening to communicate. When he stopped regaining consciousness or responding his decline continued and breathing became labouredly.

The biggest challenge for my friends and me was that we were Deaf and the people around us were hearing. Bill, who died, is hearing and did not have fluid communication with his Deaf partner. The situation required a lot of communication. So I got really involved with supporting my friend by clearing up communication issues as much I could by explaining what the terms and concepts meant in this situation to him; I was acting as a Deaf Interpreter. We understood and knew that Bill was going to pass away soon.

Bill’s family and friends were on rotating shifts to keep him company at the hospital in the palliative care unit. We could stay overnight and all day. We wanted someone to be with him all the time. It didn’t go on for very long, we only did this for two days. The three of us, all who are Deaf, were on our shift and had gone down together for a coffee break and discussed all kinds of scenarios we might experience at the moment of death.

When we returned, we saw a dramatic difference in Bill. He was breathing much more labouredly with long pauses between breaths with his tongue lolled out. We knew it was time and we froze thinking about what to do next. Danny and David, the two friends, went to alert the nurses. We knew the nurses wouldn’t be able to do anything because people do not get resuscitated if they are in palliative care. We all watched Bill exhale his last breath then his his arm slid off his belly to the side. A nurse took a stethoscope to Bill and then spoke to us but we didn’t understand so I asked her to write it down. As the nurse wrote the note, we waited patiently, looked amongst ourselves and signed to each other “Is he really dead?” The note the nurse wrote said that Bill had stopped breathing but his heart was still beating and that it would take a couple minutes before the heart stops. Danny and David decided they should go to the nursing station to have them call Bill’s son to return to the hospital. I stayed by Bill’s side and stroked his arm while the nurse checked for a heartbeat.

During those moments, I remember thinking about how I was witnessing death. I didn’t see his spirit leave his body or the grim reaper passing by, or anything that indicated the precise moment that the life force got disconnected.

When I didn’t understand the nurse said, when she finally looked up at me and spoke, I gestured to her “Finished?” and she nodded. A split second later, Danny and David returned back to the room and I signed to them “Finished. Dead.” We knew that when death occurred, the nurses would need a couple minutes to prepare the body for viewing. We went in and out of the room, cried by ourselves and got back together to comfort each other. We didn’t really know what to do with ourselves and our emotions.

What we didn’t expect was the storm that immediately followed. On top of it all, there was communication challenges with too many people at the hospital getting involved in a big group discussion. We realize now how we should have requested for an ASL-English interpreter to be present in those final moments for ease of communication in the eye of the storm. I can’t emphasis enough how stressful those moments that followed death were and how an interpreter would have made all the difference. We managed to survive the storm by getting into smaller groups and working through each issue. I found it interesting how all the issues that had to be discussed were on hold until after Bill had actually died then all of sudden there was an explosion of much needed conversations and preparation. Where was the grieving? The grieving got delayed until the funeral which was 3 days later which we had to plan for which involved finding a church, booking an interpreter, and coordinating all bits of stuff.

This has impacted me greatly because I’m close to David and in our circle of friends there’s been predictability for quite some time. All of sudden, David is talking about moving back to his hometown because he can’t support himself alone. I’m scared of losing my friend. I’ve learned that we all have different strategies, speeds and expectations associated with coping. I have to respect David’s decisions that he makes in these circumstances.

With all this happening recently, it has got me thinking more about the circumstances associated with my own death. There’s one book titled “Tuesdays with Morrie” by Mitch Albom that comes to mind. I had picked up this book and read it before the situation with Bill even happened. My mom has been diagnosed with cancer 1 ½ years ago and at the time of diagnosis there was a lot of unknowns and questions. I had felt like I was going to lose my mom in a matter of days or weeks. Since then, she’s gotten treatment and is fighting to outlive her 5 years life expectancy til they find a cure for it. I sought out for the book “Tuesdays with Morrie” because I wanted knowledge on death and what it looked like. The book is wonderful. It’s about a old professor who finds out he has a terminal illness and takes on a radical approach to make the most out of his remaining life. If and when I find out I have a terminal illness, I want to be just like him in doing a funeral for myself while I am still alive. The dying professor, Morrie, was the guest of honour and was able to enjoy the eulogies and all the nice things said about him. That’s the point of life; to live, share, say kind words, cherish, and spend time together while we’re alive. After death, it would be just telling all those nice things to a corpse that would have been better said before. As the inevitable approaches, I want my friends and family to be at my “I’m-not-quite-gone-yet-but-soon-I-will-be” funeral, and even for there to be a live streaming video of the funeral on the internet with the option for viewers to post comments.

After I’ve died, it’s up to the people that care about me to have a repeat funeral or memorial. It doesn’t matter to me because it would be more for them and than for me, so it’s not something I’m going to arrange. I haven’t decided what to do with my body. I’m queasy about donating my body to science or donating the organs but it seems like the right thing to do. The other option would be cremation and mixing in the ashes in the cement of a statue or the foundation of a new building. I would like to be a part of something that I’m passionate about such as a community centre for Deaf or for ASL. I am still figuring out what I want to happen after-death, but certainly know what I want before I die – a funeral while I’m alive.

Reflecting upon the recent experience, I realize there is a lot of deaths that happens in the world that doesn’t get witnessed by the masses and there usually is minimal involvement by most people. Bill’s death was a first-time experience for David, Danny and myself to have been directly involved with and we experienced so much we didn’t know anything about. I feel like sharing about my experiences so to minimize the surprise and shock when it happens to others.