My Friend Tom

Tom was the first adult who had Spina Bifida (like me) that I had ever met. It took 27 years and a trip to the national conference for me to meet the person who was at that time the president of our local SBA Colorado. I wasn’t really involved in the organization, and in fact barely knew they existed. Every so often I’d get newsletters with events they were holding, the latest updates, etc. And one year, through a series of events, I ended up being able to go to the National Spina Bifida conference in San Antonio, Texas. My first in what would be 9 in a row. My mom and I walked into the reception area that first day and found a table with “Colorado” written on it. A man with a bushy mustache and a kind smile was sitting there. He introduced himself. “Hi. My name is Tom.”

And over the next 15 years, he was so much more than the president of our local SBA to me. He was my mentor. Being the first adult I ever met with my same condition, his advice and guidance was invaluable in helping me navigate the world. And as a *man* with Spina Bifida himself, he and I could discuss things that only much later was I comfortable enough to talk to women with SB about. He was my friend and part of my family. My parents would even invite him over a couple of Christmases when his plans fell through. He was a good man. Kind, funny, would always have a listening ear. He was someone I knew I could count on. And for 15 years, I did. Countless get-togethers, lunches, dinners, festivals, Sunday gatherings to watch the Broncos play. Deep conversations about mental illness and less serious stuff about how his favorite bourbon should never, ever be combined with anything and to do so would be blasphemous. Hee hee 😁

Blasphemous 😇🤪

In mid 2007, he asked if I wanted to go on a humanitarian mission with him to Guatemala. He had gone in the late 90’s/early 2000’s, and had also lived there for 17 months beginning in 2005. I’m not sure of the latest statistics, but at the time, Guatemala had the 2nd highest rate of pregnancies affected by Spina Bifida in the world. And he went down there to do what he could, whether it was grant writing, which was his main job, or making contacts with doctors or other specialists who could help the community in Guatemala.

And hell yeah I wanted to go! He and I and another friend, a woman who was also born with SB, made our way down there, and it was as life-changing as you would think. There are some pictures here of my trip. Truly unforgettable, and I will always be so grateful to Tom for the opportunity. I made lifelong friends there, In fact one of my best friends is from there and will be here in the States in a few days, staying with us for a bit as we celebrate Tom’s life.

Tom was a good man. Making a difference literally all over the world. Never doing it for the recognition, but always receiving awards for his work.

Soft-spoken, he never had to be loud. Oh we had our differences, it wouldn’t be such a strong friendship if we didn’t have something to disagree about in a decade and a half. But no matter what our differences were, it was give and take, it was listening, and in the end it was always, “Cool. Wanna go get a beer?” It was a strong friendship indeed.

It even withstood a divorce. After 2 years of weekly marriage counseling, the ex and I knew we had reached the end. Summer 2011. And if any of you have ever been through a divorce, you know that with rare exception, it’s ugly. Dissolution of friends and family is the norm rather than the exception. People are usually quick to pick sides for whatever their reasons may be. But not him. He was one of 2….maybe 3 people, who said from Day One he would always “love us both” and until the day he died, he showed it. I know he had a great friendship with her, and my friendship with him was also strong. And when I remarried, he accepted my wife with open arms. “You and your ex didn’t work out. I love you both. And now you’re remarried, and I’m happy you’re happy.” They would bond over their love of cooking, and their knowledge of the culinary arts. Tom was a chef at various places for many years, before focusing on grant writing. Wife and he would talk about fancy-pants food and ingredients that clearly went over my head!

He moved to Las Vegas a couple years ago to be closer to his aging parents, but we talked often. And every time my wife and I would go to the movies, passing close to where he lived, I’d send a quick “thinking of you my friend” text.

And now? Now I just miss you. Almost 6 months on, and not only did it take me this long to write about you, but in daily life some days I struggle to figure out how to be in the world as a man with Spina Bifida, where you and I can’t talk about our all too similar hardships and triumphs as aging men with this thing. More than that, a world where we won’t hang out, ever again. You won’t come over for dinners, I won’t meet you at Little India for lunch and then drive over to World of Beer and keep the conversation going.

I miss your voice. And I’m terrified that I’ll forget what it sounds like one day. For now, I remember and cherish it. I miss you so much my friend.

I leave you all now with a story. Well, a screenshot anyway, of a quick story I recounted on Facebook a couple nights after his passing when I couldn’t sleep. A story about a man who truly made a difference “one starfish at a time.”


“There are people that fight for a day, and they are good….
There are people that fight for a few years, and they are better…
There are people that fight their entire lives, those people are vital.”
I first saw these words on a wall in a building in Guatemala my first time there. And today they remind me of my friend. He fought his entire life, for his own survival, and for the survival of others with Spina Bifida. For their quality of life, for health care, so they wouldn’t be forgotten. I will miss you my friend.
Thomas Edmund Baroch
December 13, 1959 – November 4, 2018
He had a disability page on Facebook. He liked something I wrote. He always believed in my ability as a writer. I’ll never forget that.
My wife and I, with Tom on the left. Last picture I took with him

#friendship #family #OnDeathAndDying #BifLife #biffinainteasy #spinabifida #myelomeningocele #ThisIsWhatSpinaBifidaLooksLike #hydrocephalus #TooMuchBrainToContain #chiariII #chronicillness #spoonie #TheMidlifeBifLife #IDidntChooseTheBifLifeTheBifLifeChoseMe #DamnItFeelsGoodToBeAGangsta🤘


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Together Again…

My grandparents immigrated to this country right around the same time my family and I did. 1976. While I was growing up, my family lived 2 blocks away from them. I saw them all the time. All. The. Time. And almost every time I saw them, my grandpa was doing something. From the time I was a little kid, to just a few years ago, I remember he was never just sitting around. He was never one of those old men just sitting around waiting to die. He would keep his mind sharp and read newspapers and magazines all the time. Keep his body active by walking everywhere. A nearby park, up and down the block, or to my house when the ex and I moved out of my parents house. (Oh did I mention we only moved 2 blocks down from my parents?? 😂) So my grandpa would get exercise by also walking to my house every day to bring me a plate of whatever my gramma made that day for lunch. We’re Mexican, we don’t know how to make food for just two people, and my gramma definitely didn’t either!

Whether it was “caldo Tuesdays”, or chile relleno Wednesdays, or molé Thursdays, “Pape ‘Fredo” or “Apa” would be at my door around 11:30 every morning. And sometimes he’d stay a while. I’d show him whatever I was working on that day, maybe I had a translating gig to wrap up or whatever. The best times tho were when he’d hang out and tell me stories about his childhood. About swimming in the Rio Grande as a kid. His oldest sister watching him because his mom died when he was about 3….I loved hearing about his life. At only 2 blocks away, then 4 blocks away, I saw them a lot for the first 35 years of my life. I’ve since moved a whopping 5 minutes by car away from them, so although there was no walking to their house anymore, I could still visit often.

And my grandpa could do anything. With all the knick-knacks he had in various silver buckets around his work station/covered porch, he could fix any broken appliance you brought him. My grandpa was a bad-ass at figuring stuff out and reverse-engineering something just so he can learn how to fix it and put it back together. In fact, up until a few years ago, while in his early 90s, he would still take old, broken assistive devices like a wheelchair or crutches or a walker, he’d fix em up and send them to Mexico to people in need!

My grandpa was a builder, an electrician, and a plumber all rolled into one. He built several houses in his younger days growing up in Mexico. He and his new bride lived in one before moving to the US, my aunt and her kids lived in a different home he built, before they too moved here in the 80s, my parents and older brother lived in one he built, before we too immigrated when I was born. My grandpa kept possession of the homes for a long time before finally giving them up a couple decades ago. Dude was just such a jack of all trades, he could just do anything. ❤️

Gramma passed away in July 2016, and that had the effect of kick-starting, and greatly accelerating, his downhill slide. And not just as you might suspect, with depression. Where 6 months earlier was a man who, tho he was 97, his cognitive skills were still great, his mind was sharp. Within weeks of her funeral, he’d forget who some of his family members were. He wouldn’t remember who came to visit him that day. He’d tell us my gramma was at JC Penny shopping and would be back soon. Everything came to a head when he had a stroke about two weeks before passing. But even after having an embolic stroke, things looked up. He survived the stroke, he survived the surgery, doc said he may only have sustained 1% – 2% brain damage from the stroke because of how quickly he was diagnosed and treated, and given tPA. I mean, everything that could go right, went right! Seriously, he was up and eating soft foods a couple days ago!! He was a fighter right to the end. The doc himself couldn’t believe how good a 99 year old man came out of stroke surgery! We all had hope that his wish of living to 100 would become a reality.

But when they brought him home, he took a turn for the worse. And tonight, he took his final breath at 9:29pm. Surrounded by his 5 kids, and many of their grandkids. Surrounded by love and tears at first, just an overwhelming sense of loss. But then as the night went on, smiles and laughs filled the room. Sharing random memories of his life, I shared how once when his kids wanted to get him a second hearing aid because he only had the one, he said he didn’t want 2 of them because, “Then I’d have to turn off two hearing aids instead of one when I don’t want to hear your mother!” I mean come on, that’s comedy gold people! 😂

Or the time when grandkids (I cannot confirm nor deny that this may have included me and my brother) secretly passed around the tequila bottle and took shots, making sure my gramma didn’t see it because as the matriarch of a Mexican family, she was the most powerful member of the family and the one you should fear the most! But my grandpa saw us, and said he wanted a shot! So we gave him one and I’ll never forget my gramma, rolling her eyes, asked how it was and Apa said it was “like a choir of angels going down my throat.”🤘 #hardcore #thuglife #DamnItFeelsGoodToBeAGangsta 🤘

I said when my gramma passed, and I’m saying it again now, losing a grandparent is never easy, whether you’re 12 or 42. Whether you feel cheated from only having 15 years with them before they died, or whether you’re in your 40s and you’re devastated because you’re a grown man, been alive for decades and decades, and you’ve never, ever existed in a world without them in it.
Either way, it’s damn painful.

But they’re together again. Arm in arm as they always were. He loved her so much, always making sure she was safe. And when he said things like, “I don’t want to have to turn down 2 hearing aids to ignore your mother,” it was all love. They adored each other. He adored her. Just look at the pictures. Always holding her arm, always looking out for her. 70 years together. And now, they are together again. We lost our matriarch and tonight our patriarch. And it sucks. And I don’t know how to end this, but it felt good…..therapeutic, just to write down. As I sit here in tears, I thank you for indulging me and reading this far.

Adiós Apa, lo quiero mucho.
-Su Roperito

Alfredo Aceves Salas
September 16, 1919 – January 28, 2019

#family #grandparents #OnDeathAndDying #grandpa

……..Together again……

At his 90th birthday. That man loved his sweets!

1946

He. Loved. His. Sweets.

I wonder who the jokester was in that marriage and who was more reserved! 🤔

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Lloyd Dobler Was Wrong

Showing my age here, but ya know that scene in the 1989 classic “Say Anything” starring John Cusack where he says to Constance, “Why can’t you be in a good mood? How hard is it to decide to be in a good mood and be in a good mood once in a while?”

Turns out, pretty hard when you have a mental illness like depression or anxiety. You can try to stop it, you can try to calm the metaphorical voices in your head. (Literal voices would be schizophrenia, which is a whole different topic.) And it might even be possible to stop the voices. Ah, but with help. Either with meds, or with therapy. Someone smarter than you who went to school and studied these things can help you. Someone who has an arsenal of tools in their toolbox. Jedi mind tricks you can play on yourself. But you can’t do it alone. Not really. Not if you actually have depression, not if you’re actually dealing with anxiety, having a panic attack. You can’t just “decide to be in a good mood” when you have a mental illness.

“Sure you can. Just be happy. Change your attitude. Happiness is a choice.” I get why you would think that. Some of you still believe it is a sign of weakness to be depressed or to have anxiety. And truth be told, I don’t blame you because I get it. The reasons for your disbelief are complex. For some of my guy friends, it’s the culture of “toxic masculinity” that tells you that “real men” don’t cry, let alone have depression. “Yeah right, ‘depression’ sure ok.”

The culture of toxic masculinity is killing our boys and men by the way, but that’s a topic for another day.

For others, you simply will always believe mental illness is nothing more than a character flaw. You will readily believe that something in your brain can go wrong causing you to develop Alzheimer’s. You accept that neurons can misfire and cause dementia or schizophrenia. You break out the science jargon when explaining the “love chemical” oxytocin. And you’ll accept that soldiers can get PTSD from watching women and children die. But depression? Anxiety? PTSD in a non-military person? Suddenly things change. Suddenly anybody that claims to have depression is just “sad” and needs to “get over it.” Depression is just “lack of will power.” “Laziness.” “Not praying enough.” “Everybody gets sad sometimes. Just be happy.” Someone having severe anxiety is “just lying,” or is “weak.” “My dad used to beat me within an inch of my life. And I turned out fine.”

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To that I say great. Fantastic. Your brain isn’t misfiring. Your fight or flight response doesn’t get stuck in the on position. Wonderful. In truth, our brains are more powerful than any super computers. And sometimes our super computers fail. Yet you won’t believe that those very same super computers that invented geometry and theoretical physics can go through a traumatic experience, trigger a predisposition, misfire, and cause depression or anxiety, or that something other than war can cause PTSD. Just like bad habits can trigger heart disease, so too trauma can trigger mental illness. Something turned that switch on for me, and not for you. That’s all.

Mental illness is even more complicated than we know. We are learning more and more every day. It’s real, it’s complicated, and it’s not a matter of simply “being weak.” This theory states that neurogenesis, or the creation of neurons, helps cure depression. It says that the reason SSRI’s work might not be due to raising serotonin levels, but rather in promoting neuron growth! Or this study that shows how stress in your environment can lead to inflammation in your body, which can lead to brain changes and the development of mental illness.

This study shows that anxiety might be inherited from your parents and actually changes your brain right from the start. Finally, this study shows how environment, background, brain function, and stress hormones can all overlap and lead to depression and other mental illness. The point here is that mental illness is real, real complicated, and can’t be simplified down to “being weak.” We just don’t know, and are learning more and more every day.

But it’s not your fault that you don’t believe. Your life experiences and your brain’s wiring have led you to a place where mental illness isn’t real. And that’s alright. I’m just grateful for my ridiculously supportive wife. My family. My friends. My friend Dese’Rae, creator of Live Through This, which focuses on suicide attempt survivors. Jenny and #TheBloggessTribe who just “get it” and I love that I never have to explain anything to them when I panic about something that I did just fine the week before.

Mental illness can feel overwhelming. Debilitating. Terribly lonely. You will feel like you’re the only one going through this. Nobody else gets it. You, and only you, have experienced pain like this. But that’s not true. Millions of people around the country have broken brains. Hundreds of millions around the world.

life-is-a-beautiful-struggle
#NeverAlone

And the good news is that you can do something about it. And no, I’m not talking about praying it away or smiling it away. Not talking about “….decide to be in a good mood and be in a good mood once in a while?” I mean, it can’t hurt to pray or meditate. But it won’t cure a mental illness. No, what we can do about it is that we can talk about it. On a macro level, we can bring awareness. Awareness and facts. Remove the prejudice and bias, the stigma, that many in society have against mental illness. Show people that we’re not crazy or “just weak.” And on a micro level, we can talk to mental health professionals, and we can take SSRI’s (Selective Serotonin Reuptake Inhibitor). If we choose not to do that because we’ve heard it fails for some or makes things worse for others, there are other options and ideas. We can realize and accept that this is real, not our fault, and is fixable. It won’t be easy. When depression tells you that all you want to do is stay in bed all day because “why bother?” or when anxiety makes you afraid of everything, it won’t be easy to get the help you need. But you can do it. One step at a time.

you-go-motherfucker
I have faith in you ❤

As for me, all I can do is lean on friends and family when the darkness comes, keep taking the meds, see the shrinks, and hope the clouds stay away until they don’t.

If you are having a mental health crisis and need someone to talk to, please contact the Suicide Prevention Lifeline at 1-800-273-8255 or text HOME to 741741 #depressionlies #fuckdepression #MakeChesterProud #TheBloggessTribe #NeverAlone #mentalillness #PTSDAwareness #anxiety #BeThe1To #ReasonsISpeak #StopSuicide #sicknotweak #EndTheSilence #EndTheStigma #AFSP #NSPW #TalkingAboutIt #NotAshamed #320changesdirection #IAmTheChange #IKeptLiving

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