A sneak peek at a new essay by Dave Jeffery from our upcoming May/Jun 2021 issue.
I am a Christian who has lived with amyotrophic lateral sclerosis (ALS) for a little over six years. Every day I rely on God's grace for strength as I wrote about last year at www.FaithToday.ca/WhileWePray. I am also considering at what point I let go of the struggle. In other words I have been considering how much longer I will go on living. Nobody lives forever, and thanks to ALS I am fast-forwarding to the end. Although God's grace has been wonderful all through my life, I’m now ready for heaven. So in this article I’d like to share the final chapter of my thoughts on grace.
ALS is a disease of the nervous system that destroys motor neurons and results in weak, atrophied muscles. A person suffering from ALS will eventually lose the ability to walk, talk and care for themselves. In the later stages of the disease it is possible to become locked in, unable to communicate at all.
Breathing is also affected by ALS and many people with ALS die from respiratory complications. So some people choose to undergo a tracheostomy and go on a ventilator to continue to breathe. While I respect those who choose to undergo this procedure, I have specified I do not want to have a tracheostomy, nor do I want any other heroic procedures performed to keep me alive. I also very much do not want to become locked in.
ALS does not typically lead to chronic, excruciating physical pain. Rather, the suffering it causes is the emotional and psychological impact of complete loss of independent, voluntary movement. In thinking through to what extent I am willing to experience the erosion of my quality of life, I have realized there may come a time when I need to make a choice. As my condition deteriorates further, even as I try to stay positive and rely on God’s grace, I know I will be more and more ready to move on to heaven.
While I pray for grace regularly, I admit that nowadays I'm becoming increasingly weary of this version of my life. I am experiencing more and more what I think of as Job moments when my emotions mirror those of the biblical patriarch. Now, unlike Job, I do not regret that I was born (see Job 3:1). I have had many positive and happy times in my life, and I cherish these memories. Unlike Job (Job 6:14–16) my family and friends have been amazingly supportive. I couldn’t have made it this far without their help.
But like Job sometimes the weight of all the things I have lost is overwhelming (Job 19:13–20). My formerly active life is a distant memory, a dream. Any ability to move independently around the house is gone. Now that I can no longer walk others have to move me with an electric lift. Bed baths and using a commode are the new norm. I used to be able to bathe and clean myself after toileting, but now others have to do this for me.
When I am so fatigued that I spend more hours of the day sleeping than awake, when air hunger is barely held in check by constant BiPAP machine use and painkiller patches, when the times when I am enjoying life are becoming shorter and more fragmented, and the times when I am simply trying to survive are becoming longer and longer, I find myself increasingly ready for heaven.
Like Job I regularly question God (Job 7:17–21). Why does this have to go on so long? Like Job I long to die (Job 3:20–23). Every night I ask God to take me to be with Him, but He does not answer. Perhaps there is one more conversation I need to have, or one more email I need to write before my ministry is complete and my time on earth is finished.
Grace at life’s end
A question that has been playing over and over in my mind is how does grace intersect with the end of someone's life? How can I reconcile my Job moments with passages like, “When I am weak, then I am strong” (2 Corinthians 12:10) and “That is why we never give up. Though our bodies are dying, our spirits are being renewed every day” (2 Corinthians 4:16 NLT)?
Surely there comes a time when the grace that sustains us, whatever our circumstances, is replaced by a different kind of grace – a grace that allows us to let go of and say goodbye to the people and things we have loved and cherished in this life?
I found part of the answer to these questions in the Declaration Against Euthanasia and Assisted Suicide published in 2015 by the Canadian Conference of Catholic Bishops and The Evangelical Fellowship of Canada, and endorsed by more than 25,000 Canadians. Note the following:
The withholding or withdrawal of burdensome treatment must be distinguished from euthanasia and assisted suicide. The intention in such cases is not to cause death, but to let it occur naturally. We understand that under certain circumstances it is morally and legally acceptable for someone to refuse or stop treatment (www.TheEFC.ca/EuthanasiaDeclaration).
So despite the fact that a person may deliberately refuse or stop life-sustaining treatment, fully aware this decision will hasten their death, it is considered morally and legally acceptable and in no way compromises their faith in God. But what does the phrase “certain circumstances” mean? How do people know it is the right time to die?
Obviously these circumstances will be different for every individual. The threshold of intolerable suffering is based on past, present and possible future changes to the person's condition. What is an intolerable condition for one person may be a level at which others are able to continue.
As I have already mentioned, people with ALS experience comparatively little physical pain, although the final stages can be difficult. The suffering that comes from ALS is primarily mental anguish. How this affects end-of-life decisions is, of course, different for each person.
A couple of years ago, a person I know was suffering from advanced ALS symptoms. When she was near the end, she asked her family to take her to a beautiful place where she had spent summer holidays when she was younger. When she reached there she stopped eating and drinking, and died a week later.
In my case the changes ALS has brought about in my body are affecting me deeply. Emotionally speaking I am now almost always sad. Mainly sad because I can no longer do many of the things I used to be able to do, like cycling, swimming, hiking and singing. I’m sad I will never be able to play with my grandchildren, or spend long retirement years with my family. I’m also sad because of the stress being a primary caregiver for someone with ALS is putting on my relationship with my wife.
I’m also tired, tired of struggling to do simple things like turn over in bed, tired of constantly having to ask others to help me. Ultimately I feel like I have no purpose, no compelling reason to keep on living.
Cheering on the Canucks and Raptors is not enough.
Of course, I still enjoy spending time with family. That hasn't changed. Friends still come over and we enjoy time with them. By God’s grace life is not a total drag. So there are ups and downs with an overall slow, but steady decline. It's hard to know when I will reach my personal threshold of intolerable suffering, but I think it will not take too much longer. By God’s grace I am letting go of and saying goodbye to the people and things I have loved and cherished in this life.
The end of grace
Knowing I am going next to a place where my physical limitations will be completely removed is a great comfort. I am looking forward to receiving a totally new body! Note Paul’s description of our radically different post-resurrection bodies in 1 Corinthians 15:42b–44 (NLT):
Our earthly bodies are planted in the ground when we die, but they will be raised to live forever. Our bodies are buried in brokenness, but they will be raised in glory. They are buried in weakness, but they will be raised in strength. They are buried as natural human bodies, but they will be raised as spiritual bodies. For just as there are natural bodies, there are also spiritual bodies.
So I wonder, Will there be sustaining grace in heaven? Will our resurrection bodies need daily spiritual strength from God when we are in a place where there is no sadness, sickness or temptation? As far as I can tell, in all the depictions of life in heaven in the New Testament, there is no mention of grace. Consider, for example, Paul’s words in 2 Corinthians 5:1–4 (NLT):
For we know that when this earthly tent we live in is taken down (that is, when we die and leave this earthly body), we will have a house in heaven, an eternal body made for us by God Himself and not by human hands. We grow weary in our present bodies and we long to put on our heavenly bodies like new clothing. For we will put on heavenly bodies; we will not be spirits without bodies. While we live in these earthly bodies, we groan and sigh, but it’s not that we want to die and get rid of these bodies that clothe us. Rather, we want to put on our new bodies so that these dying bodies will be swallowed up by life.
So will our move to heaven mark the end of sustaining grace in our lives? Perhaps that’s the wrong way to look at it. Perhaps we should instead say that heaven is God’s ultimate expression of grace. In heaven everything that God’s grace tried to do for us here on earth will be perfected. While heaven will mark the end of God's grace as we know it on earth, it will be the beginning of something infinitely better.
The Lord determines our steps
In Proverbs 16:9 (NLT) we read, “We can make our plans, but the Lord determines our steps.” We seek God's face for wisdom in all the major decisions of our lives. When we feel the time is right, we move ahead with confidence, trusting God to direct us. We are using our God-given free will when we choose when to study, marry, work, move, have children, holiday, retire, etc. In a very few cases choosing the timing of our death is the last decision we will make, and we can do it trusting in God to guide us.
I understand so much better now Paul’s longing for heaven as we read in Philippians 1:21–24 (NLT):
For to me, living means living for Christ, and dying is even better. But if I live, I can do more fruitful work for Christ. So I really don’t know which is better. I’m torn between two desires: I long to go and be with Christ, which would be far better for me. But for your sakes, it is better that I continue to live.
For the time being I can still write the occasional email, lead the occasional Bible study and be a husband, a father and a friend. But when my condition worsens just a little bit more, I will be that much more ready to “go and be with Christ.” Until then, for everyone reading this article, may the grace of our Lord Jesus Christ be with you (1 Thessalonians 5:28).
Dave Jeffery of Abbotsford, B.C., recently published his second book, Teach Me to Number My Days, a collection of sermons, chapel talks and other writings available from Amazon.ca and the Apple bookstore. And his third book, The Six-Month Guy: Living and Coping with ALS, available from Amazon.ca and the Apple bookstore.
Editor’s notes: A popular bestseller about ALS is the novel Every Note Played by Lisa Genova (Gallery, 2018). Photo of sunset with Dave Jeffery and spouse taken by Robert Jeffery.
Update: We are grieved to report the death of Dave Jeffrey in late March 2021. On April 6 his son Robby accepted an advocacy award for him from the ALS Society of B.C. His funeral is to be livestreamed from Sevenoaks Alliance Church April 17.