On Tuesday, June 18, 2002, Chris asked to be put to bed. We had finished lunch with visiting family and friends, and Chris had said his goodbyes to everyone. Blinded by tears, I prepared him for bed for the last time. He was ready to die, and we knew it would be soon.
Close friends and family members began coming in and out of the house. Clare, our daughter, and I marvelled at who would be sleeping over and who would be there for meals. All of us in this community Chris had created became entwined in our vigil. We laughed and cried. We took turns holding Chris’s hand, decoding messages, wiping his face and, mostly, simply being with him. Never have I felt closer to people. Never have I felt such strong peace. Never before had I felt such an overwhelming sense of God’s presence.
With Chris in bed and caregivers present in abundance, the Pentecost issue of For Words was assembled and mailed on Friday, June 21. On Monday, June 24, I awoke with Clare beside me. I looked at Chris, in his bed perpendicular to mine, and knew he would die that day. He had entered a death coma. A blanket of peace covered our house. Our voices became quieter. Our souls became calmer. Our pace was slower. Not out of fear of Chris’s dying day; rather, knowing Chris would finally be whole again.
Chris died that evening after supper. I went to check on my beloved with Clare while the others lingered at the table. Clare swabbed his mouth, and I held his hand. I watched as his breathing gradually stopped. I waited. Then I said to Clare, “I think Daddy is dead now.” It happened at our usual family story-time.
Chris called it his favourite time of day. Clare would sit on his lap for her story, and I would sit with my feet up on his footrest so our feet touched. Now, at story-time, Clare and I often talk about Daddy stories as well as her usual fare of children’s books. It is still a peaceful time of day. It is still our favourite part of the day. And our house still feels peaceful. That is the gift of the Holy Spirit moving us together in our time of grief. That is the gift of Jesus who said, “For where two or three are gathered in my name, I am there among them.” That is the gift of God who cradles us in our sorrow in his everlasting arms and says, no matter what, “I shall be there.”
—Susan Vais
I think about death a lot. The thought of dying enters my mind nearly every day. I’ve possessed this mindset since January 13, 1997. That’s when I was handed the shocking news that I have ALS (amyotrophic lateral sclerosis). On that cold, clear winter’s day more than five years ago, like a shadowy acquaintance from a far-away land, death came calling. Also known as Lou Gehrig’s disease, ALS is a rapidly progressive, fatal neuromuscular disease. While nerve cells degenerate and muscles are paralyzed, the intellect and senses remain generally unimpaired. Between 1,500 and 2,000 Canadians currently live with ALS. Ninety per cent die within five years of diagnosis. That’s two or three of us every day in Canada alone.
The wretched ailment has reached so far into my body now that its greedy fingers have slowly strangled most of my muscles, including those that allow me to breathe. A blood test taken as part of the pulmonary examination during my last visit to the ALS clinic revealed a high level of carbon dioxide in my system. Because my breathing is weak, I’m not getting enough oxygen into my blood. And because my diaphragm and other muscles involved with breathing have deteriorated, I’m not able to expel the used air that contains waste carbon dioxide. Retaining the bad air manifests itself in several symptoms.
Fatigue is the main problem. I wake up feeling tired, sometimes with a headache, as if I didn’t sleep well. At times, my brain seems in a fog, as if someone had cast a tulle net about my mind. I feel more tired than usual all day long. I never really feel rested because, whenever I start to doze, I stop breathing. My bobbing head jerks upward. I sputter and gasp for air like a drowning man hauled up over the side of a boat.
All this has me thinking more about death. My death. I find such thoughts rub against the grain of our death-denying culture. We don’t want to face our own mortality. We’d rather live in the eternal, pristine youth we see in the Gap television commercials. What a lie that is! Most of us think of death as being far off in the future. We don’t want to think of it now. We tend to dodge the fact of death. We’re like Woody Allen who said: “I’m not afraid of dying …. I just don’t want to be there when it happens.” When someone speaks of dying, our response is often, “Oh, don’t talk like that!” Or, when we refer to the possibility of death, we avoid the words by saying, “If something should happen to me ….” Having ALS rapidly changes that outlook.
Of course, I don’t know exactly when I’m going to die, but I know it won’t be long. I want to be as prepared as possible. I’ve taken the steps necessary to ensure that my neurologist can use whatever parts of my body that will be useful in his research. Susan and I have made sure our wills are up-to-date. We’ve purchased a burial plot, picked out a casket and planned services. Talking about these things now means Susan won’t have to make major decisions later.
I don’t know exactly how I will die; although, like most people with ALS, I’ll probably die of suffocation. The muscles that allow me to breathe will weaken to the point where I won’t be able to draw another breath. While the prospect of this frightens me, I don’t feel paralyzed by that fear. I expect to die peacefully and in relative comfort. I have few regrets, no enemies that I know of, no outstanding grudges that require reconciliation and no significant items I haven’t already ticked off on my life’s to-do list.
I would be turning 40 in October. Dying at such a young age causes me to feel a deep, aching sadness. I go through times of feeling sorry for myself. I feel sad when I think of Clare, and how I won’t he there to celebrate her graduation from high school or to walk her down the aisle on her wedding day. I won’t be there to lend her (or her mother) a hand through those times of rapid change and development from childhood, to adolescence, to adulthood. It breaks my heart to think of Susan and to consider all the dreams this disease has shattered. No more strolls on the beach hand in hand. No more leisurely meals at our favourite restaurant. No more tender whispers in the ear in a candle-lit room. The wound deepens with the realization that I’ve had ALS for more than half the time we’ve known each other. We won’t be growing old together.
The sharp pain of these hard realities is only slightly softened by the heightened awareness that each day is a precious gift, and that life is best lived in the moment. “Each day is a gift,” Tim Noel used to say. Tim was the deputy governor of the Bank of Canada who died of ALS last year. “Each new day is a gift. That’s why they call it the present. Don’t let the thieves of yesterday or tomorrow rob you of the gift of today.”
Now I wonder what death will be like. Bruce Cockburn once wrote in response to a friend’s sudden death: “Gone from mystery into mystery, gone from daylight into night. Another step deeper into darkness, closer to the light.” God has prepared a new life for us that is beyond our imagining. Along with St. Paul, we find comfort in the assurance that “the sufferings of this present time are not worth comparing with the glory that is to be revealed” (Romans 8).
The Bible paints various pictures of life after death. A particularly meaningful image for me these days is the marriage feast (Matthew 22, Luke 14). Once a week, one of my colleagues brings Holy Communion to me in our home. Each Sunday afternoon, he and I discuss what we’re reading and writing about. We talk about our families. We share our memories and hopes. And we celebrate the Eucharist.
Since I can’t always make it to worship, I welcome this time to replenish my soul. Rather than bread, we use a host or a wafer. When the time comes to partake, he clips the wafer into the chalice. As he lifts it to my mouth, I catch a quick whiff of the sacred draft, then part my lips and clench my teeth together, tearing off a tiny piece of the wine-soaked wafer. While it rests on the tip of my atrophied tongue, slowly dissolving to become one with my beleaguered body, I am aware this is the only food I take through my mouth these days. My sole source of nutrition, a formula resembling chocolate milk and smelling like sour vanilla, is pumped into my body through a feeding tube. But for this moment of blessed Communion, I am given a foretaste of the heavenly banquet. I am given a glimpse of what lies beyond the sufferings of this present time–a vision of myself sitting at the table in the Kingdom of God, my health fully restored, feasting with Christ and God’s people in glory. (I hope the menu includes pizza and Guinness!)
The Revelation of St. John describes a new Heaven and a new Earth, where people dwell in the eternal joy of God’s presence (21:1-4), where the doors are always wide open and the daylight has no end (21:25). The Gospels employ such images as the Father’s house, where Christ himself has prepared a room for each guest (John 14:2), and an eternal realm where Christ the King shall reign forever (Luke 1:33). Although we can’t know precisely what life will be like in the age to come, St. Paul says we will have a spiritual body. I suspect this means we will still be recognizable, that whatever change occurs at death will not alter what makes us individuals. I imagine that, as the resurrected Christ showed the nail prints in his hands and the wound from the spear in his side, my spiritual body in the age to come will bear some mark of my disease. But who knows, really. Whatever happens will be in the twinkling of an eye, at the clear, high sound of a trumpet blast (1 Corinthians 15).
I don’t know when I’m going to die. I can’t say exactly how I’ll die. Nor do I know precisely what it will be like. The only thing I can say for certain is who will be there when I embark on that journey.
One of my favourite biblical scenes is in Exodus where Moses asks God, “What is your name?” And God answers, “I am who I am!” I came across a footnote in The Five Books of Moses, a superb translation of the Torah by Everett Fox. The great theologian Martin Buber studied this passage in the Hebrew language for years. He came to the conclusion that we have been mistranslating the words. The name of God, he says, is not “I am who I am”; the name of God is “I SHALL BE THERE.” Isn’t that beautiful? The name of our God is I SHALL BE THERE.
From the moment of our baptism to the end of our days on earth, the name of our God is I SHALL BE THERE. When we face all the dangers and difficulties, all the hazards and hardships of life, the name of our God is I SHALL BE THERE. When we are lonely or afraid, and overwhelmed with worry and anxiety, the name of our God is I SHALL BE THERE. When we face sickness or sorrow, or heart-break or heartache, or even death itself–the name of our God is I SHALL BE THERE. When our last breath leaves our body and we are laid out in the grave, the name of our God is I SHALL BE THERE. And when the day of resurrection comes, with the sound of the trumpets blaring and a billion suns shimmering in a cloudless sky, the name of our God is I SHALL BE THERE.
This article was first published in For Words: A Journal of Hope and Healing and is reprinted with permission. It appeared in the September 2002 issue of the Presbyterian Record.
Photo by Sam Caplat [CC-BY-2.0], via Wikimedia Commons
