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.

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