Living with ALS, by Stephanie Gray Connors

Hugh Whelchel

Earlier this year I was on Dr. Sean McDowell’s YouTube channel discussing my book on assisted suicide. One of the listeners, Doug, wrote in a question. He said that he’s an atheist and his sister died while on a feeding tube, suffering with MS, and had been living in extreme pain every day. He said things were so brutal that even family wished for her to die. He also disclosed that she was a Christian. I was asked to comment on a Christian suffering in the way this woman did, and what insight in particular I had to offer an atheist like her brother.

You can listen to my full answer here, which begins at 42:17, but I wanted to draw attention to this part I said in particular:

  “It sounds like,” I answered, “she held to her Christian faith, so I would encourage the listener, who is an atheist, to explore in the silence of his heart, to really think about if she could go through that brutal suffering and still believe God existed and that God was good, what was it that she knew or she felt or she believed that I could at least give some time and attention to? That's what has really touched me as I've studied people who’ve suffered... they not only didn’t get angry at God, they would thank God and love God.”

  And that brings to mind two Christians whose stories I encountered recently. Both men faced the brutal condition of ALS, also known as Lou Gehrig’s disease. One man has already passed away while the other is fighting to live. One of the things that makes ALS so terrible is that while the body’s muscles waste away, the brain stays strong, meaning that with one’s advancing inability to move (or talk), he can become a mind trapped in a body.

  While this is undoubtedly scary, perhaps what is more incredible is the perspective some suffering souls have when faced with this condition. Take, for example, John Geiger.

  He wrote the following:

  Mucus (phlegm) is constantly swallowed by the average person. Due to ALS my swallowing is minimal and my ability to cough and clear my throat is practically nil. So, the mucus builds and lodges in my air passage (I have dubbed this — The Mucus Monster). The effort to clear this and breathe is traumatic. It is a real battle.

  During the five hour struggle [I experienced one day] my brain was still functioning well. A comforting thought kept going through my mind: ‘I am only gasping for air! I am only gasping for air! The important issues of life are settled.’

  I reminded myself I wasn’t gasping for truth — ‘Jesus said to him, I am the way, and the truth, and the life. No one comes to the Father except through me.’

  I reminded myself I wasn’t gasping for love — ‘This is love, not that we loved God but that He loved us and sent His Son [Jesus] as an atoning sacrifice.’

  I reminded myself I wasn’t gasping for peace — ‘Peace I [Jesus] leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.’

  I reminded myself I wasn’t gasping for salvation — ‘And there is salvation in no one else, for there is no other name [Jesus] under heaven given among men by which we must be saved.’

  Or consider what John’s son Soren said when John ultimately succumbed to death from ALS:

  His body was failing him, but his spirit remained as strong as ever, it even became more determined. He was focused on the finish line and the prize that awaited him. He would not waiver from the course. And he was a crowd favorite. He captured our attention, and he inspired us. We saw him and said to ourselves, ‘That’s how you run the race.’ And what else could we do but cheer him on, follow his example, and congratulate him on a race well run. Like Paul, he could say, ‘I have fought the good fight, I have finished the race, I have kept the faith.’…

  ...The marathon my dad ran was a grueling one at the end, but that did not deter him from running hard, running straight, and running to proclaim with his last breath the joyous news that ‘we win.’ Remember 1 Corinthians 15: ‘But thanks be to God! He gives us the VICTORY through our Lord Jesus Christ. Therefore, my dear brothers and sisters, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain.’

  Let me end by encouraging you with something my father shared with me after he learned that, due to his diminished lung capacity, he only had weeks to live. I asked him if he was scared. He said, ‘No,’ but he wished his family did not have to see him suffer because he knew that what would follow would be hard. But then he reminded me that Jesus even allowed his own family and loved ones to watch him suffer and die. My father’s point was not to compare himself to Jesus, but to remind me that Jesus knows our pain; he knows our hurt; he loves us through it; and he promises that one day sin and death will be no more.

  John Geiger knew something not everyone does. And his ability to embrace the truth of Christianity while suffering profoundly is a legacy of wisdom for us to explore and heed.

  I also think about Hugh Whelchel. As I write this, Hugh is still living with, and fighting, ALS. In March 2020 when he heard the doctor diagnose him with the condition, at the same time he heard God tell him it would be used for His glory.

  That Spring, Hugh wrote this in a blog:

  I began a Sunday school class I taught several weeks ago on ‘God’s Sovereignty and Our Responsibility’ with the following statement:

You will never be able to walk through the valley of the shadow of death and fear no evil unless you believe in God’s sovereignty.

  I believe that God is working out his master plan to restore the whole of creation, in all things, working for the good of those who love him (Rom. 8:28). At the epicenter of his plan is the event we will celebrate on Sunday, the resurrection of Jesus Christ.

  And yet, it was days after preaching those words that Hugh would receive the terrible diagnosis of ALS. He went on to say,

  You might think that this revelation has been a great challenge to my faith; if anything, it has reinforced it. That is not to say that I am excited about the turn my life has taken. I hate it. I hate the brokenness of this world now more than ever.

  But as I have turned to 1 Corinthians 15 to study over Holy Week, as has become my tradition, I am deeply moved by the power of the resurrection and the fantastic way in which Paul ends this chapter.

  It seems like Paul would say, ‘Since there is a resurrection, look forward to this glorious future?’ No. He says something quite different:

  Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain (1 Cor. 15:58).

  Even with declining health, Hugh writes, “Every morning we need to get up, lace up our shoes and run the race as hard as we can; that is our responsibility. It is God who lays out the path on which we run. We have no control over that, as I was reminded two weeks ago. The good news is that we can confidently run the race because Jesus, the pioneer, and perfecter of our faith, has already crossed the finish line, defeating the powers of sin and death.”

  Hugh reflects more on his experiences here. Like John, Hugh is living through suffering in this broken and sinful world with an attitude that our good God is not to be blamed but instead to be embraced. Both men are shining examples for us to follow.

Should Abuse of the Born be Motivation to Abort the Pre-Born? by Stephanie Gray

After a recent presentation I delivered on abortion, an audience member approached me.  She told me she worked in a daycare where many of her charges come from profoundly broken homes.  She told me nightmare stories, horrifying cases of abuse these children had endured—and were enduring (which she then reported, the authorities would step in, and in some cases after removing children for a time, the little ones would be returned to the dangerous environment with the mistaken belief the kids would be safe, only to find abuse happen again).

I was sickened by what she shared, that such precious, innocent, and vulnerable children could be so horrifically mistreated and that they would be failed by a system that was supposed to help them.

Here was the woman’s point to me: Her first-hand experience convicted her that abortion would be better than what these kids go through, and the trauma they will carry with them for life. 

There is no denying that the brutal realities she observed would impact her feelings.  There is no denying that anyone with a functioning conscience would want to spare children suffering.  There is no denying that when someone is aware of their victimization there is an additional element of horror than when someone is unaware (e.g., being killed in your sleep versus tortured to death while awake).  Here is a question: Is it possible to agree with all that and still not see abortion as a solution to what undoubtedly is a grave problem?

Consider the children this woman cares for: Would we ever say it would be acceptable to kill them now because of their abuse?  To kill them now in order to spare them further abuse?  To kill them now in order to prevent a future filled with memories of past abuse?  Obviously the answer is no—it would not be acceptable to use homicide as a solution to abuse.  In fact, isn’t homicide just another form of abuse? Killing the victim would not be justice for the victim.  It would only further the evil mentality of the abuser that an individual’s life should be mistreated.

Moreover, what if a born child had not yet been abused but we somehow could see into the future that the individual would be abused in, say, 5 years.  Would it be acceptable to kill that child in order to avoid that which had not yet happened?

  Again, the obvious answer is no.

  Correspondingly, since the pre-born child is a living, human being, it would be unethical to kill that individual because of abuse she may experience down the road.  Instead we ought to work to ensure children are born into, or placed in, environments in which they and their parents or guardians thrive in a relationship of love. 

  Critics may respond that that sounds great in theory but it is not the reality for some, like the children in the woman’s daycare.  Correct.  So we need to respond.  We just don’t have to respond with abortion.  What can a non-abortion response look like?

·         It can look like my friends who fostered children.

·         It can look like my friends who adopted 3 little girls from China who had severe cleft palates which required multiple surgeries.

·         It can look like my friends who adopted a set of siblings from the foster care system in their own country.

·         It can look like a couple I met in my travels who adopted two children when their first biological child was only one.  They since adopted two more children, both of whom have Down syndrome and serious heart conditions, all the while giving birth to 4 more children.

·         It can look like an unmarried 28-year-old I met on a recent trip to the US: In the last 4 years she has fostered over 21 children and adopted 2 of them.

·         It can look like a retired couple I met who moved from their farm into a home for pregnant women in order to mentor them in motherhood.

·         It can look like a pastor I recently met who is in his mid-50s.  He and his wife have raised their own biological children and are now fostering—which is leading to adoption—3 young children.

·         It can look like foster father Mohamed Bzeek who takes in terminally ill children.

·         It can look like a mega Church in Texas whose pastor told me he is implementing a program where his church members make it their mission to foster and/or adopt local orphans.

·         It can look like Love Life Charlotte, a beautiful pro-life ministry I learned about in January that is also on a mission to embolden its church members to care for orphans through what they term “Orphan Care Hospitality.”  Whether through fostering or adoption, learn more about what they are doing here and watch this short video about the Malone’s who have welcomed two children into their forever home through this amazing program.

·         It can look like the Lott family who adopted 4 of their 6 children.

·         It can look like my friend Ryan Bomberger’s adopted family.  His mom, once an orphan herself, made a promise to God when she was a young girl that she would be a mommy to those without one.  She grew up, got married, and adopted 10 of their 13 children (Ryan, one of the adopted children, was conceived in rape.   Having now grown up, he has since adopted two children.

Is the abuse of children—pre-born or born—an unspeakable evil?  Yes.  Does it demand a response?  Without a shadow of a doubt.  Can children be rescued and aided without abortion?  The lived experiences of the examples above are living proof of that.

**The photo in this blog is of police officer Ryan Holets and some of his family.  While on duty, Holets encountered an 8-month pregnant heroin addict.  That woman is the very type of individual many would say should have an abortion rather than bring her child into a dangerous environment.  Officer Holets and his wife adopted that little baby, who they named Hope.  Read the incredible story here. And, as described in this article, it says “Holets has been quietly helping Champ [the birth mother] and her partner find the right rehabilitation center and gave them a tablet computer so they can receive photos of Hope over email.  To Holets’s knowledge, the pair, who have not responded to a Post interview request made through Holets, are not clean. It was always his goal from the beginning to help them through rehab.”

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The Secondary Emotion of Anger, by Stephanie Gray

Two unrelated experiences reinforce what a friend of mine in social work told me: Anger is a secondary emotion.

      Over the holidays I watched an incredibly powerful and moving foreign film, “A Man Called Ove.”   Without spoiling key parts, the overall story is this: An old man is angry, isolated, and believes his life is not worth living.  As the film progresses the viewer begins to understand why Ove is as he is.  The unfolding backstory reveals what is under the surface.  This allows one to see Ove with new eyes—to see his goodness and his pain and therefore to empathize with him.  It also allows one to see what we all need for human flourishing—connection. 

  At one of my presentations on abortion an audience member spoke with me afterwards.  She shared that she was in favor of abortion, particularly in the case of rape.  I had addressed the point already in my talk.    I also shared with her the story of my friend Lianna who got pregnant from rape at age 12 and who kept her child.  She was unconvinced and unfortunately our conversation was interrupted. 

  I couldn’t shake the nagging feeling that my message was impenetrable to her heart because of some deep pain.  I was very concerned that she had been raped and/or had an abortion.  She didn’t disclose either to me, but a lifetime of interacting with people and intuition was telling me something bigger was below the surface.  Because I knew she was part of a larger group I approached one of her team leaders with my concern.  The team leader remarked that that young woman had been behaving in a difficult and defiant way.  “That type of behavior is a secondary emotion,” I responded. “Something is triggering her, and I’m concerned it’s a huge trauma.  I really think she was raped or had an abortion.”  We then identified another team leader who had gone through a trauma of her own and approached her with our concern, asking her to find an opportunity to connect with the young woman.  We prayed and it became a waiting game for the opportune moment.

  Sure enough an encounter between the two women happened and sadly the audience member revealed that she had been sexually assaulted, but she expressed how meaningful it was to have someone listen to her and share in her pain.  It became the start of a journey to healing.  Like Ove, her attitude and behavior were a cover for a deep emotional wound.  Like Ove, connection with another soul is what would free her from isolation and give her spirit new life.

  Whether discussing abortion—or any issue in which people respond with anger or an illogical unreasonableness—our approach should not be to dig in our heals and write the person off as stupid or not worth our time, but rather to go gently and seek to understand the root of the person’s passion.  It is worth remembering that of all the words used to describe love in the famous passage of 1 Corinthians 13, the first two are “patient” and “kind.” 

  When you’re next in conversation with someone and if you find yourself struggling to be patient or kind, it can be helpful to step back and say the “Prayer of St. Francis,” which, in the middle, goes, “O Divine Master, grant that I may not so much seek to be understood as to understand.”

  It is truly eye-opening what seeking to understand can lead to.

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Suicide: To Assist or Not? That is the Question, by Stephanie Gray

     This past week my newsfeed filled with news of the suicides of two famous people, Kate Spade and Anthony Bourdain.  It has struck me that there is consensus among the posts I see that these deaths were tragic, that the loss of their lives is something to be mourned, and that the cause of their death—suicide—is something to be prevented—or is it?

     As best we know, Spade and Bourdain died alone, at their own hands.  But what if they hadn’t been alone?  What if their suicides had been assisted?  What if their actions were aided by a physician?  In our confused culture, a subtle change of facts can make the thing we prevent the thing some assist. 

     Which brings to mind an experience I had on a plane last weekend.  I was flying to Halifax, Nova Scotia, to speak at a conference for physicians on the topic of assisted suicide, newly legal in Canada as well as in places like DC, Hawaii, Washington, Oregon, The Netherlands, and Belgium, to name a few.  During my flight I read a phenomenal book on the subject by my friends Jonathon Van Maren and Blaise Alleyne: “A Guide to Discussing Assisted Suicide.” Shortly before landing, a passenger next to me noticed the cover and commented to me, “That’s certainly not light reading!” he said.  In a brief conversation I learned that he had elderly relatives and his wife worked in healthcare.  “Would you like to have my copy?” I asked.  “It’s a short read—I finished it on this flight.”  He gratefully accepted it and promised to e-mail me his thoughts.

     Van Maren and Alleyne have brilliantly distilled the assisted suicide/euthanasia debate to this central question:

     Who gets suicide assistance and who gets suicide prevention?

     When the debate is framed that way it becomes difficult to give anyone suicide assistance—which is the point.  If we believe in human dignity and equality then everyone inclined to suicide should get suicide prevention, not suicide assistance.  Van Maren and Alleyne help explain it this way: A lot of times in the assisted suicide debate people will say it’s about choice, about the freedom of an individual to choose whether she herself lives or dies.  And yet, if we would try to prevent some people’s suicides (e.g., Spade and Bourdain) then it’s not about choice at all.  By trying to stop their deaths we are overriding their choice.  Which means rather than being about choice, assisting with some suicides is about judgment—about other parties making a judgment about whether someone’s life is worth saving—or not, about whether someone is better off dead—or not.  If person X would prevent Spade’s suicide but assist with grandma’s suicide, then person X is making a judgment about each person’s life and not valuing them equally.  And that’s the problem.

     Van Maren and Alleyne write,

     “Most people who support assisted suicide also support suicide prevention. This is The Split Position… [which] considers suicide and assisted suicide as totally separate topics. People who hold to this position have often never tried to reconcile their conflicting beliefs. Our goal in responding to The Split Position in conversation is to attack this cognitive dissonance – to pit their own beliefs in preventing suicide and assisting suicide against each other, and show that The Split Position is a basic human rights violation because it splits people into protected and unprotected classes. Suicidal despair is always a symptom of some other unmet need. The desire to die is changeable, suicide prevention is a human right, suicide assistance is a human rights violation, and our moral duty to the suicidal is to prevent self-harm, never to facilitate it.”

     In articulating why the “Split Position” should be rejected (as well as the position which favors suicide assistance for anyone), Van Maren and Alleyne explain the pro-life position of total suicide prevention:

     “In a society that truly values each and every human life, we have a responsibility to view the desire for suicide as an opportunity to love that person better, and to love that person more. What someone is saying when they express the desire for suicide is that they are in pain, and that they feel unloved. We have a responsibility to respond. From a personal and social standpoint, we need to ask questions such as: What is our duty to the suicidal? Are we responsible to care for and love those who cannot love us back? How can we love this person better?

     “Opposing assisted suicide does not mean a refusal to recognize how dire situations of extreme suffering or how painful the final days of terminal illness can be. It simply means rejecting assisted suicide as an ethical, humane, or life-affirming response to those circumstances. Instead, we propose that treatment centred around the person (rather than ending that person’s life) be implemented.”

     They further observe,

     “John Paul II wrote that ‘the world of human suffering unceasingly calls for, so to speak, another world: the world of human love.’  Suffering unleashes love, it demands our creative response, and a response to alleviate suffering, but never to eliminate the sufferer. Our duty to the suicidal is suicide prevention, and even in the face of a terminal prognosis or incurable condition, never to ‘quit’ on someone and give into suicidal despair. Rather, we must work to relieve unbearable suffering and apply our creativity and imagination to improve quality of life, even when it is in short supply, even in a person’s darkest moments or final days.”

     And so, in the wake of the tragic deaths of Spade and Bourdain, let us remember that just as they deserved suicide prevention—not assistance, so do the elderly, the disabled, the sick, and the dying.  To further understand why, get a copy of Van Maren and Alleyne’s book today.  It is the best apologetic I’ve read on the subject.  

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The Joy and Pain of Love, by Stephanie Gray

     The other evening I babysat my nieces and nephews while my sister and her husband had a date night.  Their littlest guy, who is 17 months old, took their departure remarkably well (it helped that he didn’t notice they left).  But when I was getting him ready for bed a couple hours later, he was captivated by the picture of his parents that hangs above his change table: “Mommy,” he said, “Daddy.”  “Yes,” I responded, “They’re at Costco,” knowing he was familiar with adventures there (and yes, my sister and her husband consider that a date night; go, Costco!). 

     But as Carl kept repeating “Mommy” and “Daddy” and reaching up to the photo, his eyes began to fill with tears.  You could see that his little one-year-old heart felt the special connection any child should feel to his parents.  He felt desire for the presence of the two people he has the deepest bond with.  Because of that, he also felt the profound ache of separation.  As I reflected on this, I thought about both the joy and pain of love.

     That concept is brought to light in the 1993 film Shadowlands, the real-life story of author C.S. Lewis finding love.  Upon a friend’s recommendation I watched it last year and was profoundly moved by its message.

     Lewis, played by Anthony Hopkins, didn’t marry until his fifties.  At that time, an American woman came into his life and initially their relationship was a non-romantic friendship based on shared intellectual interests.  In fact, although Lewis civilly married Joy Davidman Gresham it was simply so she could legally remain in Great Britain.  At that time they did not live as husband and wife.  When Joy was diagnosed with cancer, however, Lewis realized how he truly loved her and, in the presence of a minister, they married around her hospital bed.  In a mercy, Joy recovered—unfortunately, though, for only a few short years before cancer would take her from this earth. 

     In one poignant scene where Lewis and Joy travel around the scenic countryside of England, they discuss what inevitably will come:

Joy: “I’m going to die.  And I want to be with you then too.  The only way I can do that is if I’m able to talk to you about it now.”

Lewis: “I’ll manage somehow; don’t worry about me.”

Joy: “No.  I think it can be better than that.  I think it can be better than just managing.  What I’m trying to say is that the pain then is part of the happiness now.  That’s the deal.”

     The pain then is part of the happiness now. 

      There is a trade-off inherent to love—to truly embrace it means to also embrace loss.  One can only avoid the suffering of loss by refusing to enter into love—but the experience of not loving is much worse than the experience of loving and losing.  Lewis explains this in his book The Four Loves, which was published just months before Joy died:

     “To love at all is to be vulnerable. Love anything, and your heart will certainly be wrung and possibly broken. If you want to make sure of keeping it intact, you must give your heart to no one, not even to an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements; lock it up safe in the casket or coffin of your selfishness. But in that casket—safe, dark, motionless, airless—it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable.”

     To be deeply happy with Joy while she was alive, Lewis had to let his heart deeply love.  Yes, what would await him at her death was the tragic loss that only a heart that loved would feel.  Certainly, no love would mean no loss.  But no love would also mean no life.

     I have written before about John Paul II’s statement that “Suffering unleashes love” (here and here).  And when someone is loved, it unleashes life, whether literally or figuratively.  But in our imperfect world, life will also end, which will lead to loss, which will lead to suffering, which can lead to unleashing more love and life if we let it.  Perhaps that’s what the person who penned these words had in mind: “I have found the paradox, that if you love until it hurts, there can be no more hurt, only more love.”

     Could a situation be created where my nephew Carl would not have felt the (temporary) loss of his parents?  Yes—but that would mean ensuring he didn't bond, ensuring he was not loved.  And we know where a story like that leads: the orphans from Ceausescu’s Romania say it all.

     Does separation from those our hearts have loved, whether through death or life circumstances, result in anguish?  Yes, but as Joy wisely observed, “The pain then is part of the happiness now.  That’s the deal.”

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An Encounter with Grace, by Stephanie Gray

“The greatest disease in the West today is not TB or leprosy; it is being unwanted, unloved, and uncared for. We can cure physical diseases with medicine, but the only cure for loneliness, despair, and hopelessness is love. There are many in the world who are dying for a piece of bread but there are many more dying for a little love.” –Mother Teresa

     It was Lent three years ago when a 19-year-old old Canadian teenager set off on a pilgrimage to the Holy Land—well, that’s how she described her plan to her friends.  But where she was going was not the traditional Holy Land of Israel where Christ once walked; instead, her Holy Land would take her to India where Christ still walked—in the suffering human souls she would serve.  “We all have the desire to help somebody, to do something good,” Grace, one of my recent audience members, said, “but for me it was more that I wanted to meet Christ and have an encounter with him and I knew that’s what Mother Teresa and her sisters found in the poor.”

The Face of Christ

     It was the most solemn day of the Christian calendar—Good Friday, the day where Christ-followers around the world remember the sacrifice of Jesus laying down His life on the cross.  For the volunteers at the Missionaries of Charity’s home for the dying, this is a day off to enter into prayer and reflection.  Grace, however, felt compelled to ask for a special exception: Since the sisters had to serve the sick that day anyway, could she help them as long as she did so slowly and in a spirit of prayer?  They said yes, providing an opportunity for Grace to enter deeply into the “Stations of the Cross” in a way more real than ever before. 

     When one reads of Christ’s torture, we see how some close to him betrayed and abandoned him.  But then there were the others—those like Simon of Cyrene and Mary His mother—who stood by His side and by their presence were a comfort.  This was the example Grace knew to follow.  At one point she found herself kneeling beside the bed of a dying man, slowly and patiently administrating hydration through a dropper; it was then where the words of Christ played over in her mind: “I thirst.”  As she was reminded of Christ dying on the cross with a crucifix on the wall, she knew she was also encountering Christ in the individual lying in the bed before her.  While incapable of eliminating suffering, she did what she could to alleviate it.

     These moments taught that loving glances, hand-holding, sitting with, and gentle patience can bring much peace to those who are suffering.  As Grace remarked, “Regardless of what life experiences a person has had before death, when they go through such great suffering it has a transformative power—when the person allows himself to be loved and cared for by others there’s such a deep and beautiful reflection of God’s love between the sufferer and the one who is suffering with.”

     Some people who arrived at Mother Teresa’s home were extremely sick and expected to die, but with good care they were restored to health.  Others, however, had their last breath—not on a dirty street ignored by passersby, but in a home surrounded by people caring for them.  Grace told me that the few deaths she saw were incredibly peaceful: “I think it’s because the patients knew they were loved.”

     She shared another story about a man who had a severe facial cancer and most of his face was distorted or missing as a result—his jaw was gone, even some of his neck, so that it was just his eyes, the bridge of his nose, and then the rest was bandaged off.  “I had the honor of being able to be with him the last half an hour before he died,” Grace shared (although she didn’t know at the time he was so close to death).  “I remember making eye contact with him across the room for the first time and then going to see him and greet him and that was the moment that bound my heart to Christ, and the dying, and the home for the dying.  She didn’t see the grotesqueness of what cancer had done to his face; instead, she told me that she peered deep into his eyes and was captivated by the beauty of his soul.

Dignity

     We prove that a sick, fragile human being has dignity by how we treat him.  Grace explained how this was upheld at the home for the dying: she and the others would help patients brush their teeth, assist men with shaving, and brush women’s hair.  The fact that the individuals were dying did not mean such basic grooming should be withheld.  Far from it, to do such simple acts was to stress the dignity of the person—to acknowledge that they were worth caring for regardless of their condition.

     I’ve therefore been mystified by the notion of euthanasia advocates that to be denied assisted suicide is to be denied a death with “dignity.” The not-so-subtle implication is that if one dies naturally, entirely dependent on others to feed him, change him, or wipe his drool, that he has somehow lost his dignity.

     A simple dictionary definition of dignity is this: “the quality or state of being worthy, honored, or esteemed.”  A sick person cannot lose her dignity because she is—in other words, by her existence she ought to be honored, respected, and cared for. 

     Consider that when something is valuable in and of itself we act differently around it—we treat it as its nature demands.  Consider an expensive, one-of-a-kind painting: a museum curator is going to make sure the valuable artwork is “handled with care.”  Or consider a sleeping newborn baby: parents will walk quietly and gently into the bedroom to check on the child, avoiding making startling noises.  When a painting is covered with dust or a baby soils her diaper we do not say these have lost their dignity—rather, we respond in such a way (by dusting the painting and changing the child) as to acknowledge the dignity that lies within.

     So ought our response be to those who are dying—not hastening death, not eliminating the person, but instead being present and caring for the individual with the gentleness and reverence that their dignity inspires.

The Gift of Presence

     When I think of Grace’s experience caring for the dying, I am reminded of a powerful reflection by author and blogger Ann Voskamp, who wrote about her friend Kara Tippetts story of dying from cancer.  Ann wrote,

All the faces of humanity carry the image of God.

What if deciding to end a human life is somehow the desecration of God’s image?

What if a human life is not only a gift of grace right till the end – but is a reflection of God’s face right till the end?

What if we are not at liberty to end or destroy human life, no matter how noble the motive, because all of life is impressed with the noble image of God? 

***

Kara taught us that:

In our efforts to terminate suffering — too often we can be forced to terminate the sufferer — when we were meant to liberate the aloneness of the sufferer, by choosing to participate in the sufferings — choosing to stand with the suffering, stay with the suffering, let the suffering be shaped into meaning that transcends the suffering.

 ***

 The word “suffer,” it comes from the Latin that literally means to ‘bear under’ — suffering is an act of surrender, to bear under that which is not under our control — but beyond our control.

That is why suffering is an affront to an autonomous society:

Suffering asks us to ultimately bear under that which is ultimately not under our control — which proves we are ultimately not the ones in control.

***

She chose to bear under the suffering — because she humbly chose to bear depending on others…. being a community, being a body, being human beings who belong to each other and will carry each other as much as humanly possible.

If suffering is about bearing under — suffering is a call for us all to be a community to stand together and carry the weight of bearing under — only to find that we are all being carried by a Greater Love.

Suffering is a call to come, to show up, to be there. Suffering can be a gift because it’s a call for presence; it’s a call for us to be present. 

      So whether it’s a young mom like Kara dying in Colorado, an old man dying in India, or a suffering soul right in the midst of our own backyard, each of us has the capacity to respond to our neighbor’s suffering as Grace did, with the gift of our presence.

Note: A beautiful book about achieving a good death in the face of suffering is The Measure of My Days.

Comfortable in His Skin, by Stephanie Gray

     It was an encounter science predicted would never happen.   As I sat sipping coffee, my interviewee, a 30-year-old teacher, enjoyed a Root Beer, masking the reality that he normally consumed nutrition by a feeding tube.  But I guess Root Beer isn’t really nutritious.  I suppose if you’re going to ingest it, you may as well let it serve its only purpose—to treat the taste buds.

     Moe Tapp was “supposed” to be dead 28 years ago.  But sometimes people defy the odds.  I learned about his condition two years before learning about him.  Epidermolysis Bullosa (EB) is something I tell my audiences about when I speak on assisted suicide and suffering.  I tell the story of Jonathan Pitre, a 16-year old who lives with this excruciatingly painful condition, and talk about how killing people ought not be the solution when we need to kill pain.

     And then, one day recently, a person with EB showed up in my audience: Moe was grateful someone was telling others about “the worst disease you’ve never heard of,” as an EB research association describes it.

     When we subsequently met at an A&W in downtown Vancouver for him to tell me his story, I reacted the way most do when they encounter someone whose skin is as fragile as a butterfly’s wings, whose painful blisters cover a majority of his bandaged body: “Is it okay to hug you?” I cautiously asked.

     “Yes,” he said.  “Don’t worry.  If it would hurt me, trust me, I wouldn’t let you.”  He does, though, have a fear of falling and typically needs assistance walking down stairs to ensure he doesn’t fall—because he has, and there aren’t words to describe the searing pain of blistered skin slamming against hard floor.

     It has been said that “Two people can look at the exact same thing and see something totally different,” which demonstrates that “Perspective is everything.” That is certainly true when considering Moe’s story.

     One could focus on Moe’s bedtime routine: How he connects his feeding tube so liquid nutrients can be slowly dripped into him while he sleeps. 

     But better would be to focus on what Moe wakes up for: his employment at a high school where he works with students from grades 8-12 who have learning issues of all kinds, whether ADHD, dyslexia, autism, etc.  His own experience of suffering, and rising above it, gives him profound compassion.  He is fulfilled in being needed by his students, who are fulfilled by him connecting with them, by his belief in them and their ability to achieve.

     Moe could be frustrated by the stares and questions he gets about why he looks different, and whether or not he was burned in a fire or car crash.

     But instead he seizes the inquiries as opportunities to raise awareness about EB.  As Moe said, “We won’t find a cure if people don’t care, and people won’t care if people don’t know.”  Moe confidently initiates discussion of his condition every year with a new crop of students.  He encourages their inquisitiveness.  In doing so, he not only teaches them about his condition, he teaches them how to be accepting of one’s difference.

     One could focus on the brief period of anger Moe went through in his mid-twenties.  Blisters in his throat caused such severe pain he couldn’t eat at all by mouth.  He realized then that he would never be able to be spontaneous and just go travelling without doing weeks of research to make sure all he needed could be addressed in a new environment.

     But better would be to focus on the camp he went to in Minnesota where anyone in the world who has a skin disease gathered.  He first went as an attendee and then returned as a volunteer.  Knowing he was part of a broader community of people whose shared experience enabled them to readily empathize with each other gave him encouragement.  Attendees cheered each other on with this philosophy: “If you can do this, if you can overcome, so can I.” 

     One could spend time dwelling on the burden and pain of baths and dressing changes every 2-3 days that cost $1,000/month—and the infections and exhaustion that come along with living with EB.

     But better would be to reflect on how his Catholic faith has sustained him (and become more personal and real for him in adulthood), and how his family and friends have rallied around him and stood by his side.  Moe is a gamer.  He also loves watching wrestling (and dreams of being a commentator for pro-wrestling).  Old school Rock and Roll is his music genre of choice and reading is also on his list of enjoyable activities.

     Moe has never thought of suicide.  But on that topic, and its close relative euthanasia, he said he does understand why people would consider them due to pain—not that he supports them; in fact, he views both as wrong and would instead focus on pain relief and comfort.  He noted that he got swayed against euthanasia when he heard a compelling pro-life presentation; moreover, he realized that to say someone like him should be allowed assisted suicide, but others should not, is to make the judgment that his life is somehow less valuable than someone who is 100% capable.  He said if someone wanted to end their life he would ask why, then see what their life was like at home, at school, etc., and then work to make that person’s life better. 

     “There’s hope, always hope,” he declared.  “I know it sounds corny, but it’s true.  People will always be around you that care.”

     Of course, if such people are lacking, it would be better to introduce supportive people rather than eliminate a suffering person.  Moe himself has reached out to families whose babies are diagnosed with EB.  They first connect over the condition, but remain friends because of a familial bond that forms.

     At the beginning of the interview I asked Moe how he would describe himself.  “Good natured,” he said.   “[A] good dude, pretty chill.”  That definitely captures my observation of him; and when I think of that, plus the full and satisfying life he leads, even with—and perhaps because of—such a debilitating condition, I think about how, in a paradoxical way, Moe Tapp is comfortable in his skin.

Watch Moe's story here:

Moe Tapp is not your average activist. He has a rare genetic condition called epidermolysis bullosa, or EB. Only 1 in 2.5 million people share his condition. Moe wants the world to know about the disease, so he’s participating in the Human Library project part of Vancouver’s PUSH Festival. Watch to find out more about Moe's journey.

Watch a commercial about EB:

To donate, please visit: debra.org/give

See more commercials by clicking here. 

The Impact of Choices, by Stephanie Gray

Photo Credit: Nyx Sanguino, commons.wikimedia.org/wiki/File:Zuly_Sanguino_is_an_environmental_lover.jpg

     At a recent presentation I gave on euthanasia and assisted suicide, an audience member asked about how to respond to people who say that ultimately the debate is about “choice” and if someone wants to choose to end their own life, it’s their body and their choice; it doesn’t affect anyone else so we should allow assisted suicide.

     I’ve already written here about “our” lives and the responsibility we have toward being good stewards of these gifts.  Now I’d like to reflect on the concept of choice and whether any one person’s choice is really independent of, and without effect on, the other.

     In my first year English class at UBC we were assigned to read Dr. Martin Luther King, Jr.’s Letter from Birmingham Jail.  His magnificent writing moved me deeply and so many of his statements became quotable quotes for me; in particular I was struck by these words:

     “We are caught in an inescapable network of mutuality, tied in a single garment of destiny. Whatever affects one directly, affects all indirectly.”

     Choices we make, big or small, positive or negative—these have a permeating influence.  They don’t just affect us.  Like a drop of food coloring in a glass of water, they diffuse into the surrounding area and impact people who, upon being touched, make other choices that in turn affect others.

     Consider smoking.  Besides the obvious impact on others being second-hand smoke, if someone only ever smoked in isolation, the effects on his body because of smoking would still impact others: subsequent lung disease would create a use of the medical system, which would impact society.  If he died early as a result and never accomplished things he would have if he had remained healthy—that would impact society too.

     The interconnectedness of our choices to other peoples’ lives can be seen in a delightfully simple illustration: Several years ago in Newington, Connecticut, a customer at a coffee shop decided to pay the order of the patron behind him.  That led to a chain reaction so that the next one thousand customers paid for the order of the person behind them.

     How true it is that we are caught in an inescapable network of mutuality, tied in a single garment of destiny. Whatever affects one directly, affects all indirectly.

     Or consider Zuly Sanguino, a Colombian woman who has overcome profound suffering: She was born without arms and legs.  Her father committed suicide when she was two.  She was raped when she was seven.  She was bullied as a child and almost attempted suicide at 15.  Now, however, she is an artist and motivational speaker who lives an incredibly full and rewarding life. 

     She said, “It gives me so much happiness to know I'm helping people. One boy was about to take his own life with a gun when he saw a TV show I was on. He realized he had to be brave and decided not to take his life. He wrote to me and we're now really good friends. I get letters from lots of people who say I've helped them through difficult situations.”

     How many peoples’ lives are better because of Zuly’s witness?  Correspondingly, had she committed suicide (on her own or with assistance) how many peoples’ lives would be worse (and even over) because of her absence from this world? 

     How true it is: We are caught in an inescapable network of mutuality, tied in a single garment of destiny. Whatever affects one directly, affects all indirectly.

     Our choices impact people for better—or for worse.  Consider the story of Will, a young man who was killed via the death penalty.  His lawyer, David Dow, recounts Will’s story in a TED Talk: Will’s dad left his mom while she was pregnant with Will.  Will’s mom, afflicted with paranoid schizophrenia, tried to kill Will with a butcher knife when he was 5 years old.  Will was taken into the care of his brother until that brother committed suicide.  By age 9, Will was living on his own.  He eventually joined a gang and committed murder.

     The choices of Will’s father, mother, and brother undoubtedly impacted Will.  There is simply no denying that we are caught in an inescapable network of mutuality, tied in a single garment of destiny. Whatever affects one directly, affects all indirectly.

     So the next time someone supports euthanasia or assisted suicide because such a choice “only affects the people who want to die” we can use the above stories as analogies to show that that simply isn’t true.  Involving medical professionals in Person A’s assisted suicide means Person B may no longer trust her health care provider to properly care for her life.  Person A’s assisted suicide will impact the disposition of the individual who supplies the life-ending drugs or injects the deadly poison because you cannot kill another human being without that leaving a mark on your mind, your emotions, and your interactions with others.  Person A’s legally endorsed assisted suicide will create a climate where Person B asks for assisted suicide too—not because she truly wants it, but because she feels guilted into it by a culture that embraces it and makes her feel like a useless burden.  Person A’s assisted suicide will influence others to respond to their own suffering and obstacles by giving up instead of turning them into opportunities (as Zuly did).  How do I know this?  Because as Dr. Martin Luther King, Jr., has said, "We are caught in an inescapable network of mutuality, tied in a single garment of destiny. Whatever affects one directly, affects all indirectly.”

A Resolution for the New Year: In the Face of Suffering, Unleash Love, by Stephanie Gray

     I was speaking with a woman recently who asked me, “Do humans always have value? When do they lose their dignity?”  I told her I believed our human value is inherent to our being, so that our value cannot be lost or lessened.  “But,” she interjected, “What about the dementia patient who sits by herself all day?”

     I acknowledged that that is a problem; however, I pointed out that the solution is not to say she has lost her value or dignity, but rather for people like you and me to affirm her value and dignity: to slow down our busy lives and, to borrow a phrase from the Canadian Down Syndrome Society, to “Celebrate Being” with such an individual.  We could visit that lonely person, I said.  We could hold her hand.  Humans are made for relationship—for connection.  We could foster that.  We could listen to music with her.  We could sing to, and even with, her.  I talked about the proven effectiveness of music therapy.

     The woman, ever the “Negative Nelly,” asked me to think about all the dementia patients in a hospital ward and how it would be impossible to have individualized music styles for each person.

     I find it fascinating how, when some people see the largeness of a problem they so easily reject any solution.  Maybe we can’t help everyone, but how is that an excuse not to help someone?  We would do well to remember a paraphrase of the words of Edward Everett Hale: “I am only one, but still I am one.  I cannot do everything, but still I can do something.  And because I cannot do everything, I will not refuse to do the something that I can do.”

     With that in mind, on the last day of 2016, I spoke about euthanasia to over 100 university students in a workshop at the CCO Rise Up Conference.  After equipping the students about what to say regarding euthanasia and assisted suicide, I ended with what they could do about it.  I told them that if the law is followed then no one should be euthanized who does not ask for it.  So our job is to make sure no one asks for it.  And we do that by intentionally spending time with the sick and lonely.  I left the students with a 2017 New Year’s Resolution that I’d like to challenge all readers to do:

     Make a commitment to visit a sick, disabled, elderly, and/or lonely person one day/week in one of these ways:

      1)      In your own family, or neighborhood, regularly visit a lonely person.

     2)      Contact your church and ask if there is a member of the church who is a shut-in and who would benefit from a visitor.

     3)      Sign up at a local hospital or elderly care home to volunteer by visiting patients.

     Are there more people than you alone can help?  Yes.  Does each individual person ideally need more time than you can give?  Yes.  But remember this: doing something is better than doing nothing.  Starting is better than staying still.  As Anne Frank once said, “How wonderful it is that nobody need wait a single moment before starting to improve the world.”

     Will this work?  Consider these stories:

     My friend Kathleen LeBlanc shared this experience she had a few months ago: “Every Friday morning, I've been spending an hour playing Scrabble with a lovely 93 year old lady at a local care home. It's my simple way of helping the elderly find joy in their daily life. I'm always praying for opportunities to talk to her about God, or to simply show her that she is loved. Today, that opportunity came in full force.

     “After our game, she outright asked me, ‘What do you think of doctor-assisted suicide?’ and pointed to an article from the paper on the topic. I told her that I felt it was very sad that anyone should feel the need to take their life, and it's our failure as a society when anyone is left feeling this way. After some time discussing this, she expressed to me that she can sympathize with people who don't feel they have a reason to live in their suffering, as she too, often wonders why God still has her ‘stuck in this wheelchair.’

     “With tears in my eyes, I was able to tell her what a joy she is to me, and that I look forward to visiting her every week. She teared up as well, shock in her eyes, and said, ‘Really? Is that true?’ I nodded, unable to get more words out. ‘Well then, perhaps there is reason enough for me to be here.’”

     Or take another friend of mine, a nursing student.  She saw on a patient’s chart that the patient had made an inquiry about euthanasia.  My friend intentionally visited that patient more than others.  She never discussed euthanasia, but she did spend time getting to know the woman.  She became interested in her life; she connected over common interests and common backgrounds; she smiled and was joyful; she engaged the patient in conversation.  In short, she poured love out on her.  A few weeks later when my friend checked the patient’s record, there was a note indicating the patient was no longer interested in euthanasia.

     So please, make 2017 different.  Make it better.  To borrow a concept from St. John Paul II, resolve to respond to someone’s suffering by unleashing your love.

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Finding Meaning in Suffering, by Stephanie Gray

Image Source: Prof. Dr. Franz Vesely, Viktor-Frankl-Archiv, Wikimedia Commons

     When acceptance of assisted suicide was written into Canadian law earlier this year, one of the criteria for it became this: that the person “have a grievous and irremediable medical condition” which is defined, in part, as an “illness, disease or disability or …state of decline [that] causes them enduring physical or psychological suffering that is intolerable to them and that cannot be relieved under conditions that they consider acceptable.”

     Everyone suffers at some point or another, but most do not select suicide.   So to suffer so much that one chooses death over life is to suffer to the point of despair.  Rather than assisting with a despairing person’s suicide, we ought to instead consider the insight of psychiatrist and Holocaust-survivor Dr. Viktor Frankl.  In this interview he talks about the following mathematical equation his observations and lived experiences caused him to create:

     D = S – M  

     He explains it as follows: Despair equals Suffering without Meaning.  Some people get cancer.  Others get hurt in car accidents.  These are very real cases of suffering—not to be minimized.  But whether someone despairs in light of these experiences is in direct proportion to whether they find meaning in the situation or not.

     Dr. Frankl cites a teenager in Texas who became a quadriplegic—undoubtedly, an experience of suffering.  And yet she did not despair as others in her situation have.  What set this young woman apart was not her experience of suffering but her response to it: She spent her days reading newspapers and watching the news for an important purpose—whenever there was a story about someone experiencing difficult and challenging times, she would ask that a stick be placed in her mouth so she could use it to press keys to type out letters of encouragement, consolation, and hope to the people she read about.  Dr. Frankl said, “She’s full of confidence.  She has a strong sense of abundant meaning in her life.”  She turned her experience of suffering into a springboard to reach out to others; it enabled her to have empathy and share hope.  In short, she found meaning.

     Or take another person with quadriplegia, a young man who became paralyzed at 17 years old.  Dr. Frankl received a letter from him: “I broke my neck but it did not break me.  I am at present helpless and this handicap will remain with myself apparently forever.”  Why, like the aforementioned young woman, did this man not despair?  Because he found meaning in his situation: “I want to become a psychologist to help others,” he said in explaining his decision to pursue post-secondary education. “And I’m sure that my suffering will add an essential contribution to my ability to understand others and to help other people.” 

     When speaking of individuals like the two mentioned, Dr. Frankl noted, “They can mold their predicament into an accomplishment on the human level; they can turn their tragedies into a personal triumph.  But they must know for what—what should I do with it?”

     The brilliance of this philosophy is that it empowers everyone.  While we cannot necessarily escape suffering, we can escape despair, and we can escape it in direct proportion to the meaning we allow ourselves to find in a situation.  In other words, when circumstances prevent us from eliminating suffering, perspective allows us to add meaning, and that, in turn, helps alleviate the suffering itself.

     This can happen in profound ways.  Dr. Frankl told a story about a man who was electrocuted and all four of his limbs had to be amputated.  That patient wrote, “Before this terrible accident I was bored, always bored, and always drunk.  And since my accident I know what it means to be happy.”

     This is proof that happiness is not determined by physical wellbeing but by an attitude of the mind.  So if someone is struggling in this area and requests assisted suicide, it’s our job—not to facilitate their despair—but to facilitate their search for meaning.

     If a Holocaust survivor, amputee, and quadriplegics can do this, why can’t we all?

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