We’re Nearly There: The Importance of Community

My grandfather died when I was 16 years old. I have no real memory of him – no endearing stories of “the time when Grandpa and I…” I’ve heard I once sat next to him on a piano bench, and that he was very sweet to me, his only grandchild at the time, while I listened to him play. I imagine toddler me probably helped with my chubby toddler fingers plunking away at the keys beside him while we shared our musical moment, creating a piece no one had heard before, nor will ever hear again. A perfect grandfather/granddaughter sonata as only a grandfather and grandchild can create.

By all accounts, my grandfather was quite an accomplished musician who played upwards of 17 instruments. I’ve only been able to play 5 proficiently. I still hope to add a couple more. While your bucket list may have “Tuscany,” mine has “cello.”

When he died, we weren’t informed. No one knew he had a family. There wasn’t an emergency contact the care facility had on file. In fact, we actually didn’t learn he’d passed until almost ten years after the event when my Mom started tracking him down.

My grandfather was laid to rest in a pauper’s grave in Henderson, Texas, where there is no headstone marking the site – only a number. His name was James, but maybe he went by Jim or Jimmy to his friends and family. I’ll never know because I only met him once.

My grandfather didn’t do anything to our family to deserve this end other than suffering from paranoia and schizophrenia. The reason I didn’t know him is that he spent the majority of his adult life in an institution. We didn’t visit. When I asked about him, asked what he was like, my Mom would say she didn’t want to talk about him. When I asked about his family, these great aunts and uncles I’d never met, his siblings, I was told they really didn’t want to have anything to do with him or us because of his mental illness. This seemed odd and a bit hurtful. We hadn’t done anything wrong that I was aware of other than be descended from their brother. How could someone judge me (or them) based on my grandfather’s illness? They didn’t know me. They had never spoken to me. Maybe they weren’t aware of the fact that my family tree isn’t a stick, and I actually have a lot of DNA from fairly diverse pools – not just his or his family’s. His descendants aren’t actual clones. I’m not his clone. Hey, the science of the time just wasn’t there. But apparently because he suffered from a mental illness, I’m not worthy of knowing. I’m not going to lie to you, I’m pretty delightful. I’m also exceptionally modest.

I’m aware of only one photo of him. I found it while on one of my extra-nosey Nancy Drew adventures looking for clues within my Grandmother’s framed photos. I would pop open the backs and look for hidden photos. And that’s how I found him – this young and serious face peeking back at me. A lost memory freed. I took the photo to my grandmother and tween-girl me demanded, “Who is he?” I expected to hear a story about an old friend. Maybe a cousin, or perhaps a boyfriend from college? “That’s your Grandfather.” I was stunned. I just stared at his photo – this stranger who is part of my story whom I don’t know anything about. My only real and tangible memory of him was discovering this one image. It’s now in my frame, displayed on my shelf – no longer hidden.

My Mom learned from his caseworker at the institution that my grandfather was well thought of – that he was a kind and gentle man, and that they had been saddened by his loss.

Over the years, I asked about his mother, my great-grandmother, and learned she’d also died in an institution. I always believed, and likely made-up, that she was institutionalized in North Carolina – that the family had left her behind when they moved to Texas. When I started digging for details, I discovered that not only was she a native Texan, but she was institutionalized in Austin – in a set of buildings that I had worked in. She died at 48 – in those same buildings – buildings whose halls I’ve walked through – buildings where I sat at a desk on a campus where she’d likely looked out upon from a window or even strolled through, as I have.

I taken aback, because I had no idea. We didn’t talk about her. Her illness was a mark on our family, like my grandfather’s.

I pulled up her father’s death certificate. He also died in an institution. The cause of death was from “exhaustion” after having a manic episode. It was near the three-year anniversary of the death of his daughter, my grandmother’s sister, whose death certificate indicates she had head trauma and then died… in an institution. I wanted to throw up. I had gone down this genealogical path in hopes of learning I was descended from Niall Nóigiallach or, you know, Sacagawea. I’m not picky. However, that’s not what I found. I found sadness, loneliness and abandonment in this branch.

I never knew these stories, their stories, because the stigma surrounding all of them, all of their struggles, was so awful that no one dared to openly talk about them. What would the neighbors think? What would the people at church think? What would our friends think? I have always believed my ancestors’ illnesses were a poor reflection on us – that their being ill said something terrible about me – that we would be judged by their suffering. In fact, I know that by sharing this information today, in our “enlightened” society, that some people will take what little they know about me, about things I’ve done (or will do), and they’ll now frame those actions in this particular context. “Oh, mental illness. Well, it runs deep in that family.” I even know that some people will take what they think they know about Jay and try to work my family’s personal history, something that had nothing to do with him or what happened to him, and they will try to weave it into his narrative.

Mental illness is isolating.

Most of us understand the importance of community. Just look at the word – “common” and “unity.” We thrive thanks to our community. It can give us a sense of belonging, of purpose, of identity. It bonds us together, it protects us and it provides us with support through our happiest and hardest times. Sure, there are also downsides. I’m certain the Hatfields felt a sense of community with Hatfields, and McCoys felt a sense of community with McCoys, and while the younger generations at times sought a new community, the elders weren’t having it. There’s us, and then there’s them. Go to any major sporting event, and you’ll find people, strangers, bonded together as they cheer on their team. Put those sides together at the end of the game, and riots can erupt. However, let one tragedy befall America, and we’ll cast aside political differences to come together, because we’re America. That’s also community. Incidentally, I will punch you out if you say something about Texas and you’re not from here.

There’s a reason being banished or exiled from a community is such a major punishment: the person becomes vulnerable – physically and mentally. They lose their support, they lose protection, and they lose their sense of identity/belonging – things almost all of us need to survive. At the extreme, it’s why prolonged periods of solitary confinement is so taxing on a person’s mental and emotional state. We are meant to be with a group.

We need each other to survive – to thrive.

Many times those suffering from a mental illness will not seek help – in large part, because of the stigma involved. They have a very real and valid fear that if others found out, they would be excluded from the group. Or they’d be treated to a series of denials in the form of, “You just need to buck up! Smile more! You’re not ‘really’ ill, you’re just not trying hard enough to be happy – to be well – to be sane.” So, people end up suffering and not seeking the critical medical care they need, which can lead to a series of cascading events as they attempt to address their issues on their own.

If I broke my arm, and I walked around with it hanging awkwardly at my side, wincing and grimacing with each jarring move I made, not only would family and friends try to intervene, strangers would likely stop me and say, “Honey, you need help – let me call someone.” No one would even think to suggest that if I just tried harder to have a straighter arm, it would all work out.

That’s another way we’re ignoring issues around mental illness, by telling people who suffer they’re not real.

Ignoring mental illness isn’t working.

Stigmatizing people for suffering, and stigmatizing their families, isn’t working. This failure in our society has resulted in 129 people dying each day by suicide in the US alone, and the numbers are increasing. 1 in 5 adults (20%) in America experience a mental illness. Nearly 1 in 25 (10 million) adults in America live with a serious mental illness. One-half of all chronic mental illness begins by the age of 14, three-quarters by the age of 24. We are failing them.

Since my last post about this issue on September 22nd, approximately 2,838 Americans have died. People who were alive as I wrote my words who are no longer here today. It hasn’t even been a month. Of that total, approximately 440 of those have been our veterans. The men and women who have fought for our freedom – who sacrificed their personal freedom, their families, and their bodies to allow us to enjoy the lives we have today.

Approximately 2,322 Americans who are alive today will be gone by October 31st. That’s too many.

Right now those 2,322 people are struggling. Right now you can make a difference by reaching out to them, while they’re still here – before their pain exceeds their ability to cope – before they’re a statistic, before their family is writing a blog asking for your help.

You can make a difference.

My team is now $230 away from reaching our team goal of $5,000 in support of the American Foundation for Suicide Prevention (AFSP). I’m now $400 from my personal goal. I am so grateful and in awe of the support we’ve received. I didn’t tell the team, but I honestly didn’t believe we’d make it this far. A huge thanks to everyone whose been able to make a donation.

We got this far, because as a community we have banded together to say:

  • Mental Health issues are important,
  • Finding ways to curb the ever increasing number of suicides through research is important,
  • Advocacy is important,
  • Helping survivors is important, and
  • Jay is important

People have occasionally come to me for advice on how to handle complex grief. I’m truly not an expert. I still grieve. I’m still deeply wounded. But I draw strength from my community – from my family, from my friends – they refuse to let me fall.

It will take a community coming together for one last push to reach our goal. It will take a community coming together to reduce the suicide rate in the US 20% by 2025.

If you’re able, please consider making a small donation to my team: The Jay Walkers for the Out of the Darkness Walk in Austin, which will be held on November 2nd. The money goes directly to AFSP.

We’re so close and we really need your help.

My grandfather lies in a pauper’s grave, because of the misfortune of suffering from a mental illness. A lifetime of grandfather/granddaughter concertos went unrealized, unheard, un-laughed about. A lifetime of grandfather/granddaughter moments of pouring over sheets of music, digging through scores, and having someone see music the way I see music were missed. A lifetime of grandfather/granddaughter hugs never happened. A lifetime of grandfather/granddaughter political debates weren’t enthusiastically debated.

A lifetime of being seen by his family, surrounded by their love was denied this man.

The only thing my grandfather did wrong was have a chemical imbalance in his brain. For that he was punished. For that he was exiled. For that he lies in an unmarked grave.

I walk to raise awareness about mental health issues. I walk to raise awareness about suicide. I walk because they can’t.

I need your help.

They need your help.

As always, if you see someone in crisis, assume you’re the only person who is reaching out and do so. Have a Real Conversation.

If you are in crisis, please call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255) or contact the Crisis Text Line by texting TALK to 741741.

I Won’t Be Silent

I returned to work a week after Jay died. I braced myself as I headed towards my desk; I needed to be prepared to cope with the cards and flowers that people likely left there. I needed to steel myself for the outpouring of sympathy, knowing it would be hard, but well-intentioned. It’s what we did as a group – we came together to support our teammates during their times of loss or need. Plus, for the most part, people generally like me (except that one woman who clearly has no taste). Why wouldn’t I expect a big show of support?

I wasn’t prepared for what I found as I rounded that corner. I found nothing. Absolutely nothing. No cards. No flowers. No little notes. In fact, people kept swinging by to ask me about my vacation, and I stared back at them dully, unable to speak. Others avoided me (for months). In fact, I asked one months later if they knew Jay had died. They did. They explained they didn’t know what to say, so they decided to say nothing. That friendship is dead to this day.

Let me clarify something real quick: I had an incredible core group of coworkers who rallied around me and supported me completely. They attended Jay’s memorial. They sent cards, texts, and called me on the phone. But when it came to telling the rest of the team, they found themselves in an extremely awkward situation. They worried about how to share my news and they had serious concerns about violating my privacy. Their silence on the subject was well-meaning. How do you tell everyone, “Beth’s husband died by suicide?” They decided it was better to err on the side of caution to avoid causing me additional pain. No one wanted to see me hurt more.

Unfortunately, the side effect was that I did not have the usual support that one would receive after losing a spouse. So, in the absence of a conga line of teary-eyed condolence hugs and cheer-up candy from my coworkers, I began to behave in ghastly ways. I was blunt. I was harsh. I was rude. I was unforgiving and unapologetic. When asked about my vacation, people staggered out of my office backwards while stammering out their apologies. When asked in meetings, “Is everything ok, Beth?” people suddenly wanted to end the meeting early while quickly excusing themselves. I was unpleasant on a good day, and intolerable on a bad day, and there were plenty of bad days.

I finally had to ask a team member to spread the word that Jay had died, because crushing people’s “welcome back from vacation” cheer was wearing me out.

What happened to me was not atypical.

There’s a stigma around suicide and around mental health issues. We, as a society, shy away from talking about it. If it happens in your family, you keep it in the family. I mean, what will the neighbors think? (Well, in my case, my neighbor threw Holy water over the fence into my yard.) What will your friends think? What will your co-workers think? What does it say about you, your lifestyle, your family…? And talking about it, except in hushed whispers, makes us uncomfortable.

Well, if suicide makes you uncomfortable, it should.  Here’s why – it’s the 10th leading cause of death in the United States, and it’s steadily increasing each year. In 2017, 47,173 Americans died by suicide. That same year, in the US, there were over 1.4 million attempts. There are approximately 129 suicides per day, 22 of those are veterans. Globally, over 800,000 die by suicide annually.

We need to talk about it. Hiding it isn’t working. Silence isn’t working.

People who are struggling need help, and we’re telling them to be silent. We’re telling them there’s shame in having a mental health issue – there’s shame in suffering. However, if they had a chronic condition like arthritis or asthma or even cystic fibrosis, we’d encourage them to seek treatment. If they had cancer, we’d make referrals to well-respected oncologists. We’d offer advice. Hell, we’d become WebMD authorities and merrily hop down every homeopathic trail in hopes of getting them relief.

What we wouldn’t do:

We would never ask a person with a chronic condition to suffer silently. We would never tell them they needed to smile more. We would never insinuate they were making a choice to be ill.

And if a co-worker lost a spouse to cancer, the team would rally around them because we understand cancer.  There is no shame in having a spouse die due to cancer.

Like many people who die by suicide, Jay suffered from depression. He’d suffered since he was a teen. Convincing him to see a medical professional was a battle. It took years of talking about medical intervention, and pointing out people he knew who, like him, suffered from depression but were having success with medication. I had to work on removing the stigma of seeking help just to get him to make an appointment. And once his medications started having an effect, he said something that broke my heart, “this is the first time I’ve ever felt happy.” Imagine going your whole life without knowing or remembering what “happy” felt like.

We must keep talking about suicide. We must keep talking about mental health. We must make mental health a priority.

When I first opened-up about Jay and the impact his death has had on me, I received feedback from a couple of people. They shared their personal struggles and said they didn’t fully realize how devastating suicide was to the people left behind; that my stories had made them think. Then last week another friend, also deeply was affected by Jay’s death, shared a similar story.

That’s why we keep talking about it. That’s why we cannot and should not be silenced or marginalized. Talk makes a difference. Talk saves lives.

Last year a co-worker attempted to admonish me by saying, “I don’t think you realize how much you talk about Jay.”

I will never stop.

The American Foundation for Suicide Prevention (AFSP) will also never stop. Their mission to fund important research into the best ways to prevent suicide, to advocate, educate, and provide support to those who have lost a loved one gives me hope that they will reach their goal to reduce suicide by 20% in 2025.

I believe in their mission.

That’s why on November 2nd I am walking in the Out of the Darkness Walk here in Austin, Texas. I’ve set a goal for our team of $5,000, and a personal goal of $3,000.

I believe it’s a challenging goal, but achievable with your support.

Please help by making a donation today.

We’d also be honored to have you walk with us! Just click the link! OR consider re-posting this blog post, and tell people your story.

But no matter what you decide to do, I ask one huge favor:

Never stop talking about mental health issues. Reach out to anyone you think may be struggling (assume you’re the only person who is reaching out).

Huge thanks to those who have already signed up to walk with me, and to those who have made a donation; it means a lot, it makes a huge difference, and I appreciate each of you!

If you or someone you know is in distress, please contact the National Suicide Prevention Lifeline:

24/7 Crisis Hotline: National Suicide Prevention Lifeline Network
http://www.suicidepreventionlifeline.org/
1-800-273-TALK (8255) (Veterans, press 1)

Crisis Text Line
Text TALK to 741-741 to text with a trained crisis counselor from the Crisis Text Line for free, 24/7

Veterans Crisis Line
Send a text to 838255

A Message from Keith

In my email this morning – from my friend Keith:

Hi Beth,

As you know, I got braces last week.  What you may not know is how much they cost:  A lot.  I recently realized, however, that not only will these braces benefit me with straightened teeth, but they will also benefit everyone else by making my smile nicer to see.

With that logic, I don’t see how you could deny that these are no longer “my” braces and “my” cost to bear but instead are “our” braces and “our” cost to bear.  Since this affects so many people, I have determined your low, low share is only $100.00.

Please let me know when I can expect the check.

Keith

It’s emails like this that make me glad to have the friends I do. I wrote Keith back and let him know I’d be quoting him. His response was one of disappointment; he had hoped I would either agree to sending a check or sass him. He was prepared! He shared the response he had waiting. It wasn’t bad. I explained trying to match his cleverness would have been rather pointless on my part. I knew I had already been bested without having typed a single word. “I yield, good sir!”

But on a more serious note, you have to admit he did make an excellent point. His smile really is OUR shared burden. So, just let me know if you’re interested in covering my part, since seeing Keith’s new smile will make me happy, and when I’m happy, I write about happy things, which in turn makes you feel much happier. A pay-it-forward situation. And I want you to be happy! 🙂

A Plea to Stephen Colbert

Friends and Family (the rest of you are off the hook again – yipppee!)

I just want to thank you all for helping support The Institution Theater and Me – especially all of you past and present PBS folks.  It means a great deal to me and I know I owe you one.  You are now officially on the “Beth’s Favorite People Forever and Ever” list.  I know, it’s like Christmas has come early (or maybe really late).  Hrmm…  The rest of you, it’s still not too late to make the list, but you’re cutting it close.  Do you really want to be on the “other” list – a list you could avoid for a mere $10?  There are only a few more days left on the theater’s drive to make $20k and they’re still not there.  It’s going to be close.

So, the theater owners made a little video and here’s where you can help if $10 is like pulling really cheap teeth.  We all know we’re just six degrees from Kevin Bacon (I can make it in 4), which means we’re probably even closer to Stephen Colbert.  If you can’t give $10, maybe you could pass this video on to a friend who knows Stephen Colbert.  Then I could say I attend the Stephen T. Colbert Theater of Imagineering for a Better Better Tomorrow.  He might even name one of the owners after himself and finally put Perry’s Hair on the Threat Down list (unless he already did that and I missed the episode).