Mar 16

Assisted Death the Theme of Amy Bloom’s “In Love”

Heller McAlpin, NPR, asks potential readers of the new book by writer/psychotherapist Amy Bloom, In Love: A Memoir of Love and Loss, “Would you agree to help your beloved end his life when he receives a hopeless diagnosis?” The issue of assisted death is what Bloom faced in her own marriage.

The diagnosis in question is early-onset Alzheimer’s, which struck Brian Ameche in his mid-60’s.

Not everyone will agree with Brian’s decision, or with Bloom’s agreement to support his wishes. Bloom understands that euthanasia is a controversial subject, and she addresses it with the gravitas it deserves. At various points, she worries ‘that a better wife, certainly a different wife, would have said no, would have insisted on keeping her husband in this world until his body gave out.’ In Brian’s sharper moments, she worries that they’re acting too soon. She also, rightly, rails at a system that allows animals to be put out of their misery, but not human beings.

The bumpy road to assisted death, or in this case legally “accompanied suicide” (involving drinking sodium pentobarbital) brings the couple to an organization in Switzerland called Dignatas. But you can’t just access Dignatas because you want to. One of the stumbling blocks was proving Brian’s level of “discernment and determination”:

The couple know that if they wait too long, he will no longer be capable of passing this test. They hit an upsetting delay when they learn that Brian’s neurologist had written on the MRI report that the reason for the test was a ‘major depressive episode.’ Depression is a deal-breaker for Dignitas, which does not want to be in the business of helping clinically depressed people commit suicide. Brian and Bloom have to prove that the neurologist’s note is simply not true.

Simon Van Booy, Washington Post, believes In Love demonstrates that “perhaps the two most challenging issues for Bloom as a wife” are finding alternatives to Dignatas if rejected and deciding how to tell loved ones.

While the latter, i.e., telling others, produces “some unusual reactions,” the former involves pondering various other methods of dying:

The author recounts how she considered drowning, procuring fentanyl from a drug dealer, DIY suffocation, and VSED (voluntary suspension of eating and drinking), which in the case of her husband (a former Yale football player) could take as long as a month…

In Love is currently on many critics’ must-read lists. The following review excerpt from Publishers Weekly echoes the sentiments of many, including my own: “With passion and sharp wit, [Amy Bloom] jumps back and forth between the beginning of their relationship, the Herculean effort it took to secure an agreement with Dignitas, and the painful anticipation of the final trip to Switzerland. Most poignant are the intimate moments they share as they make the most of their last days together. As she writes, ‘I imagine that Brian feels as alone as I do but I can tell he isn’t as afraid.’ The result is a stunning portrayal of how love can reveal itself in life’s most difficult moments.”

Feb 02

Ambiguous Loss, Lack of Closure: Pauline Boss

Pauline Boss coined the term “ambiguous loss” and invented a new field within psychology to name the reality that every loss does not hold a promise of anything like resolution. Amid this pandemic, there are so many losses — from deaths that could not be mourned, to the very structure of our days, to a sudden crash of what felt like solid careers and plans and dreams…Krista Tippett, Onbeing.org

Ambiguous loss is a concept coined by (now retired) therapist Pauline Boss decades ago when she was a graduate student. Her book Ambiguous Loss: Learning to Live with Unresolved Grief was a solid introduction. Her newest, The Myth of Closure: Ambiguous Loss in a Time of Pandemic and Change, was just released in December.

As Graison Dangor reports (NPR), “People may long for closure, which psychologists define as the act or sense of completing or resolving a problem we’re suffering from… In fact, [Boss] argues, not feeling closure is actually healthy as we seek to move forward with life.”

Selected Quotes from Boss’s NPR Interview

Ambiguous loss is a situation that’s beyond human expectation. We know about death: It hurts, but we’re accustomed to loved ones dying and having a funeral and the rituals. With ambiguous loss, there are no rituals; there are no customs. Society doesn’t even acknowledge it. So the people who experience it are very isolated and alone, which makes it worse.

Many people in this world have been forced to live with it: families with missing loved ones such as soldiers missing in action or children kidnapped, as well as people with loved ones who have dementia. What I’ve learned over the years is that most of them continue living a relatively good life with the ambiguity of loss. They do that by holding two opposing ideas in their mind at the same time: My loved one is here and also gone. That way of thinking shakes us loose from thinking with certainty, you know: “You’re either dead or alive.” Well, sometimes we don’t know.

You can’t continue to hope that we’re going to go back to how our society was before the pandemic. Changes have already taken place. And they won’t go back once it’s over. You should move forward with something new to hope for.

Selected Quotes from Boss’s Books (Goodreads):

Ambiguous loss makes us feel incompetent. It erodes our sense of mastery and destroys our belief in the world as a fair, orderly, and manageable place.

To regain a sense of mastery when there is ambiguity about a loved one’s absence or presence, we must give up trying to find the perfect solution. We must redefine our relationship to the missing person. Most important, we must realize that the confusion we are experiencing is attributable to the ambiguity rather than something we did – or neglected to do. Once we know the source of our helplessness, we are free to begin the coping process. We assess the situation, begin revising our perceptions…We feel more in charge even though the ambiguity persists.

Mixed emotions are compounded when a separation involves the potential of irretrievable loss. When there is a chance that we will never see a loved one again, we protect ourselves from the prospect of losing that person by becoming ambivalent– holding our spouse at arm’s length, picking a fight with a parent, or shutting a sibling out even while he or she is still physically present. Anticipating a loss, we both cling to our loved ones and push them away. We will resist their leaving and at the same time want to be finished with the goodbye.

Dec 01

“Permission to Grieve” Your Own Way

Permission to Grieve: Creating Grace, Space, & Room to Breathe in the Aftermath of Loss (2019) by Shelby Forsythia, Certified Grief Recovery Specialist, preceded last year’s Your Grief, Your Way: A Year of Practical Guidance and Comfort After Loss by the same author.

I. Permission to Grieve

“Drawing on her experience as a grieving person and two years’ worth of interviews with grief experts like Megan Devine, Kerry Egan, and Caleb Wilde, Shelby Forsythia makes the case for radical, self-honoring permission—free from personal judgement and society’s restrictive timelines and rules” (from the publisher).

Selected Quotes

The solution to grief is not a pain-free existence. It is allowing ourselves to grieve and witnessing ourselves in that process. Permission and presence are the remedies for agony and isolation.

When we grant ourselves permission to grieve, we make the experience of grief something we recognize, something we welcome into our lives. We allow it to show up the way it wants to through feelings, identities, and actions. We write our own expectations and stories. Our grief becomes ours again and we become more ourselves again because we actively choose to experience grief.

Grief looks, feels, and shows up differently to each person. Just like no two losses are alike, no two griefs are alike, either. You cannot know the full depth of another person’s experience and they cannot know the full depth of yours.

II. Your Grief, Your Way

Every day of the year has its own page. A reader can take it day by day or can skip around. Some examples of tips and style that Goodreads reviewers appreciated:

I think my favorite suggestion was to add a phrase to everything I do when I feel I’m not doing enough. Just add – ‘while grieving’ to whatever you’re doing. It makes a difference and helps one realize we’re doing the best we can.

I loved the exercise where you are asked to take 5 random words and take them to describe the person.

It doesn’t preach at me, allowing my own worldview to remain at the center where I prefer it. It doesn’t tell me how to grieve, or why I should or shouldn’t feel a certain way, or anything else inappropriate. It simply sits with me and gives me permission to think, or to feel, or to cry, or to laugh, or to wonder, or to ache. It is brief and accessible, moving and graceful, without being terse and inadequate.

Selected Quotes from Your Grief, Your Way

With a loved one’s death, we step into a liminal space – we’ve stopped living our old life, but we’ve not yet stepped into our new one.

Grief is less like a predictable sequence and more like an amorphous blob of uncertainty. You can’t forecast your way out of grief, because there’s no way to determine when the next wave is coming. This may seem disheartening at first, but when you recognize that there is no structure for grief, you can stop trying to pinpoint exactly where you are on your journey. If there’s no road map, it’s impossible to be lost.

There is so much more to grief than just death. In losing someone, you lose their presence in every single moment and milestone that appears after their death. Every hope, dream, and expectation you had for the future must now be reworked, because the person you love can no longer be there. It’s normal to feel like you’re grieving multiple losses when someone dies.

Oct 20

“The Etiquette of Illness” by Susan Halpern

Although I’ve already addressed a related topic (see “Someone’s In Crisis: What Not to Say, What to Say“), when it comes to how to be with a sick or grieving loved one there’s more to add.
One of the main things I took away from reading Will Schwalbe‘s 2012 The End of Your Life Book Club (see previous post) was his use of info from therapist Susan Halpern‘s 2004 The Etiquette of Illness in his ongoing frequent conversations with his terminally ill mom.

Here’s what Halpern suggests when relating to someone who’s sick:

#1 “Ask: Do you feel like talking about how you feel?”

#2 “Don’t ask if there’s anything you can do. Suggest things, or if it’s not intrusive, just do them.”

#3 “You don’t have to talk all the time. Sometimes just being there is enough.”

Taking Number One to heart in his regular encounters with his mom, Schwalbe knew that rather than keep asking her how she was feeling he could ask if she even felt like talking about how she was feeling. There’s a significant difference.

Halpern really gets the struggle:

Of course we don’t know what to say…There is no training program for what to say, and some of us, happily, have very little experience. Some people I have met have felt abandoned in hard times by good friends. Sometimes people who are ill and feeling abandoned will call their friends, but that is rare. It is the role of the ‘well person’ to reach out. While it can be hard to initiate contact, doing so brings pleasure and solace to both parties.

Additional quotes from The Etiquette of Illness:

When people are suffering, they’re not open to hearing horror stories about others with similar maladies. There is less capacity for compassion at such moments.

When we help, we are in a potentially overpowering position.

Compassion occurs when we open our feelings to the feelings of another person, without judgement, pity, or a need to fix. It is an act of holding the fullness of feelings of another in our awareness and feeling suffering or joy with him or her; without becoming lost in the feeling.

Publishers Weekly‘s summary of Halpern’s contributions: “…[She] believes that what we say depends on the individual, the relationship and one’s own self-consciousness. So long as the words come from the heart, it is the expression of true compassionate feeling that will be remembered by the recipient.”

May 11

“Closure” Not Realistic: Uncertainty and Healing Are

Sociologist Nancy Berns, author of Closure: The Rush to End Grief and What It Costs Us (2011), finds that the definition of this widely used term varies depending on who’s using it—and, in short, that closure is a made-up concept.

From her website:

Closure has been described—in contradictory ways—as justice, peace, healing, acceptance, forgetting, remembering, forgiveness, moving on, answered questions, or revenge….

But closure is not some naturally occurring emotion that we can simply find with the right advice. Healing? Yes, healing is possible, but that is different from closure.

Myth Slayers is her term for those who mostly agree with her; the Walking Wounded is for those who don’t. In short, “Myth Slayers want the freedom to grieve” (Psychology Today); the Walking Wounded “are stuck in a holding pattern internalizing the belief that without closure they cannot move on with life” (Psychology Today).

But what’s wrong with having hope for healing? Well, nothing. It’s more about how hope is used by some. The following comes from Chapter One:

…There are many ways to grieve, and there is hope for healing. Along the way, though, there are people trying to shape what you do in the midst of pain for a variety of reasons. Hope is a valuable resource and, unfortunately, used as a means for marketing products and ideas. We need to guard hope.

So, how do people actually move on and/or deal with grief? The following quote from Berns about death can apply to other losses as well: “We do not ‘get over’ a death. We learn to carry the grief and integrate loss into our lives. In time, the grief becomes lighter, but still remains. At any point, something may knock off the scab on one’s heart. And it hurts” (Psychology Today).

Other quotes by Nancy Berns on closure:

…(T)here is no point of “final closure,” no point at which we can say, “Ah, now I have finally completed my grief.” Or, “Yes, now I have healed.” There is no point at which we will never cry again, although as time goes on the tears are bittersweet and less common.

You do not need to “close’ pain” in order to live life again.

The trick may not be finding all the answers, but learning to live with some questions.