Thursday, October 22, 2015

Denying and Accepting Mental Illness

I’m haunted by lines from psychiatrist Kay Jamison’s  Night Falls Fast: Understanding Suicide, in which she describes from personal experience how it feels to be suicidal. The prospect of suicide, she writes, was “the end of what I could bear, . . . the final outcome of a bad disease. No amount of love from or for other people—and there was a lot—could help. . . . Nothing alive and warm could make its way through my carapace. I knew my life to be a shambles, and I believed—incontestably—that my family, friends, and patients would be better off without me. There wasn’t much of me left anymore, anyway . . .” (p. 291). 

I had a friend read this passage aloud at Noah’s memorial. I seized on it, desperately, as an explanation: Noah was cut off, on another planet, literally beside himself. I made a copy for my in-laws, thinking it would help them. “It’s the chemicals in the brain,” someone told me at the memorial; “mental illness is a terrible thing.” Dazed, I figured she was right. But several months later, I was mortified that I’d been so quick to assume that Noah was mentally ill and to imply with the reading that he, too, had bipolar disorder, when the evidence was murky for anything beyond diagnoses of depression and anxiety.  

While Noah was declining before our eyes, I went in and out of thinking he was mentally ill as opposed to struggling with sensitive young adult angst and confusion. I knew he had lost a close friend to suicide, but I didn’t know that could lead to PTSD and put him at high risk for suicide. I knew his depression was getting worse and needed treatment, but I didn’t grasp that it could be a terminal illness. I didn’t know he was having anxiety attacks and that those can be scary, disabling, near-death experiences. I knew he had a psychotic episode three months before his death--I hid the car keys and pleaded with him to get help---but when his symptoms subsided, I thought it might have been triggered by stress or drugs.

I’m ashamed to say I didn’t take seriously the few hints Noah dropped about possible mental illness. “I have so many voices in my head, I don’t even know which one is mine,” he told me. I should have asked what he meant and really listened. Instead, I assured him we all have many voices in our heads and can spend years trying to find our own authentic voice. I saw what he said through the lens of “normal” experience. But Noah may have meant, literally, voices—including those telling him to kill himself.

So part of me is and has been in big denial. Jamison says acute psychological stress is one of the three causes of suicide, along with genetic predisposition and a major psychiatric illness. Is it possible to dread another anxiety attack so much that you work yourself up into worse spirals of fear? Apparently so. Is it possible to obsess and anguish so much that you literally drive yourself crazy? That’s less clear. Is it possible to contemplate suicide because you are too sensitive for this world and its pain, yet not be mentally ill? 

The reminder of mental illness as a close cousin to suicide can feel threatening, especially to families like ours that haven’t dealt with the mental health system or grappled with the label of “mentally ill” for a loved one. We knew Noah was suffering and then in crisis, but we never had to contend with self-harm, hospitals, or the police, much less the diagnosis of a chronic, severe condition and series of treatments. We never saw him as mentally ill when he was alive because he hid his anxiety attacks and suicidal feelings--but also because we were afraid and ignorant about mental illness and suicide risk and weren’t allowed to consult Noah’s doctors and therapists. Noah refused to see a professional during the last several months of his life when he was most visibly declining. It’s hard to accept the label for our child now when he’s no longer here to answer for himself or be properly diagnosed. 

We will never know for sure. Yet part of me is moving toward acceptance that Noah likely struggled with an elusive, untreated mental illness. When I feel angry now about his suicide, it’s less accusatory anger at Noah for being stubborn about treatment and letting himself deteriorate. I’m more often mad now at circumstances, at mental illness itself, at the limitations of psychiatry, and at fate for giving my child a losing number in the genetic lottery. I’m learning more about mental illness and the families that live with it and realizing that we did, too.

“His illness moved faster than his acceptance of it,” family members said at the funeral of another promising young man who took his life (Jamison, 1999, p. 67). How can I fault Noah for rejecting the bleak future of medications, doctors, and hospitals that he assumed was inevitable if he sought help? Most of Noah’s life had been about growth and accumulation—of talents, skills, friends, knowledge, experiences. Maybe he couldn’t face the prospect of life as a person with mental illness, which he assumed would be all about loss and limitations. For himself and also for those who loved him.

The more I can accept the possibility of Noah’s struggle as an illness, the more open I may be to compassion and forgiveness. That's not a reason for acceptance, of course, just a likely outcome to think about.

Sunday, October 11, 2015

In Praise of Support Groups

Though I’ve mentioned them only briefly on this blog, support groups have been a crucial part of the grief journey for me and many others after suicide loss. I’ve been part of four very different groups led by several facilitators, with the number attending ranging from two to 30. I can’t imagine having come this far without the love and understanding of these groups. 

The most formative experience came from the first group I attended, starting three months after Noah took his life. It was a comfort just knowing there was a time and place every week to focus on my loss, voice my grief, and be with other survivors. Unlike other times and places, I didn’t have to worry about whether the people around me could tolerate my pain, whether I felt safe, or whether I would be able to function. All I had to do was bring my grieving self into the room. 

When I was most lost and distraught, that group showed me a way forward. It was led by a therapist and a trained volunteer, both survivors who were well-versed in grief, suicide, and suicide loss. They offered not only compassion but invaluable perspective and resources that helped me begin to make sense of what happened to my son and what was happening to me and my family. Through them, I saw, dimly, that healing was possible, though it felt remote and unreal at the time. 

In listening to and affirming one another, group participants normalized an experience that seemed so abnormal beyond that room. When I recounted an insensitive remark made by a relative, they were instantly appalled and protective on my behalf. When someone talked about not being able to go back to the house where the suicide occurred, everyone nodded. We shared our dread of holidays, anniversaries, packing up our loved one’s things, going back to work. We congratulated each other on every small step. For 90 minutes a week, we didn’t feel so crazy or alone.

In that group and others, I’ve especially appreciated: Bringing in pictures of our lost ones. Doing relaxation exercises and meditation together. Hearing inspiring readings about grief and healing to close each session. Lighting a candle for our shared losses. Hearing just the right words at just the right time. Turning all our care and attention to a new member who had just lost her brother and couldn’t stop crying. Exchanging hugs with strangers who are no longer strange.

I’ve struggled at times, too, with these groups. I didn’t meet as many other mourning moms as I had hoped. I got impatient with monopolizers and facilitators who didn’t stop them. In the early stages, it was disturbing to hear about some methods of suicide or types of mental illness, histories of suicide attempts and hospitalizations, severe abuse or family dysfunction. I was burdened enough with my own story and not always up to hearing another tragedy or letting in someone else’s bitterness and anger when it was out of sync with my feelings. So I tuned out for a while at some sessions. Fear of being overwhelmed with others’ troubles, along with fear of exposing their own, keeps some people away from support groups. I’m glad I persisted. 

It takes all kinds of support to move through the pain of suicide loss. I say, get as much support as you can from as many sources as possible! If you want to learn about support groups in your area, you can find listings here or here . Try a group a few times to give it a fair chance and allow yourself to get used to it. Many groups do pre-screening so you can talk with someone first before attending; they may advise you and your spouse or partner to attend separate groups, like my husband and I did. Groups meet weekly or monthly; some are led by trained volunteers, others by mental health professionals; some are open (drop-in) and ongoing, while others are closed and time-limited; some people attend for months, some for years. 

Your experience in a group will depend on the qualities of the facilitators and members, as well as your stage in the grief journey and your willingness to share, learn, and ally yourself with this “club no one wants to join.” I see joining a support group as another step in "coming out" as a survivor and chipping away at shame and stigma 

It's a privilege to meet people from all walks of life who share your pain and share their stories in a safe space, led by skilled facilitators.These fellow travelers can become your teachers, comforters, cheerleaders, and friends. 

With deep thanks to all the suicide loss survivors, facilitators, and organizations that make these support groups possible. To my fellow survivors: I’d love to hear about your experience with support groups—and if you haven’t tried one yet, may you find your way to a good one.

Sunday, October 4, 2015

The "100% Preventable" Myth

We get such mixed messages. People—including some doctors and therapists—say that “you did all you could” or that “if they’re determined to kill themselves, you can’t stop them.” The overall suicide rate has held fairly steady over time. Yet the suicide prevention field implies, by its very name, that suicide can be prevented. Some groups even claim that suicide is “100% preventable.” This misleading message has spread in recent years to government, military, nonprofit, and educational web sites and programs, as well as news media. At a survivors support group I visited, a member was upset after seeing a “100% preventable” billboard while driving to the group, and others chimed in with similar disturbing experiences. 

Ronnie Walker, founder of the excellent web site, Alliance of Hope for Suicide Survivors, documents the spread of “100%” claims and their harmful effect on survivors. The claims reinforce our sense that we did not do enough, even if our loved ones gave no signs of suicidal despair or intentions, or even if we as family members strove mightily for months or years to help them. Walker suggests we look on 100% preventability as a “possibility” for the future but recognize that we have a long way to go to meet that goal. 

I’m no expert. From what I’ve learned and experienced, it seems that many suicides are preventable--up to a point. Some people in despair get beyond help when they reach the point of no longer being able to think clearly, to feel, or to care about their connection to others. At that point, they get tunnel vision or voices in their head that lead to thoughts only of suicide, putting them in a kind of “suicide trance." That seemed to happen with Noah as he moved through the last weeks of his life in a daze, barely able to converse or connect, much less call a psychiatrist. The challenge, it seems to me, is early detection and intervention: recognizing when distressed people may be moving toward that point, convincing them to get help, and continuing to show them our love, concern, and vigilance. 

Many survivors of suicide loss have to live with the tension between believing that “this did not have to be” and having felt powerless to help our loved one. We may get involved in suicide awareness and prevention in the hope of saving even one life, yet at the same time wonder if such efforts would have had any impact on our lost one.  I doubt that Noah would have ever attended a suicide prevention workshop at his college or called a crisis line—though maybe one of his friends would have, and maybe that would have made a difference.

More experienced survivors in my support group help me understand that suicide may not be 100% preventable, but we can and must do more as a society. We must de-stigmatize mental illness and suicide and make it acceptable for everyone, across gender, age, race, culture, religion, and sexual orientation, to ask for help. We must put resources and commitment into suicide prevention research and action, as well as accessible, compassionate mental health services, with the hope that over time, those efforts will help more people cope, heal, and avert suicide. We need innovative outreach geared to the specific needs, tastes, and lifestyles of populations at risk, like the “it gets better” campaign for LGBTQ youth. We need to train all adolescents and college students in mental wellness, coping skills, and depression/suicide awareness and to spread such training to workplaces, nonprofits, and health organizations. 

As an ancient Jewish sage wrote : “It is not your responsibility to finish the work [of perfecting the world], but you are not free to desist from it either” (Pirkei Avot/Ethics of the Fathers 2:16). I can agree with that 100%.