Spina Bifida Awareness Month Continues. And So Do I…..

When I was growing up, I would receive our local SBA newsletter and I would read about how this 12 year old or that 9 year old with SB died suddenly.
That sticks with you.
I never thought I’d live very long. I thought I’d be dead in my teens. I mean, if that 12 year old died, why wouldn’t I? And when that didn’t happen, I thought I’d die by 24. Why 24? Dunno. Why not. Now here I am, 43 and still alive. Albeit with health issues, both SB related and non-SB related. And both physical and mental health issues. But I’m here. So. That’s cool.

And yet, my friends and fellow people with SB continue to die. Kidney failure, compressed lungs from their messed up spines, inhibiting their breathing. Or the infamous pressure sores that they couldn’t feel until they’d get down to bone and caused sepsis and ultimately death. Friend of mine died a couple years ago at 40. A little girl with a family I used to be close to died at 6 because she was dealing with flu and shunt failure simultaneously, and her little body couldn’t take it.

And we’re coming up on a year since one of my best friends and favorite people on this Earth died. Tom Baroch. Dear sweet wonderful kind-hearted Tom. Kicked my ass when I was being dumb, and fiercely loyal and protective when he felt people were being unfair. Was his death SB related? No I suppose not. Not directly anyway. Spina Bifida exacerbated it, but either way 58, a couple months from 59, is way too young in this day and age. Don’t get me wrong, I’m trying to get to 58, and hopefully a decade or two more than that. We’ll see. But it’s sad.

But on the plus side, I know people my age and older, oldest one being 73, who have Spina Bifida and are still well. Quite well, in some cases. All their faculties, still walking around, doing fine.

Don’t really have a point. It’s 1am and not being able to shut my brain off is sorta my thing. Just never know when it’s your time to go I guess. Nobody knows, I get that.

Still. Some days it’s overwhelming knowing the odds have been stacked against you since birth.
*goes back to holding his wife, for which he is grateful.*

#BifLife #BiffinAintEasy #ProfessionalPatient #SpinaBifida #Myelomeningocele #ThisIsWhatSpinaBifidaLooksLike #Hydrocephalus #TooMuchBrainToContain #ChiariII #ChronicIllness #Spoonie #TheMidlifeBifLife #IDidntChooseTheBifLifeTheBifLifeChoseMe #DamnItFeelsGoodToBeAGangsta🤘

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My Story

Backstory to what you’re about to read: Regular readers of this blog know I was born with Spina Bifida. I wrote this after I came back from my first Spina Bifida conference in 2003. Before that, I had never even met another adult with SB. I knew they were out there, I just never met them and so, well, here’s that story (and I still changed my name through out, to My Bleeding Ink because even tho everyone and their sister knows who runs this blog, I still dig whatever anonymity I can get):

“Hi! My name is (Bleeding Ink). I’m 28 years old. I’m married. I have a dog and a pet snake. I like to read. I like to go down to 16th St. Mall and people-watch. I hope to go back to college someday.”

That’s how I introduce myself now. It wasn’t always like that. I used to say, “Hi. My name is (BleedingInk) and I was born with Spina Bifida.” Maybe I would add, “I was born in El Paso, Texas but my family moved to Colorado when I was 3 months old, in order to find better medical care.” I used to say that because, in my head, that’s all I was….a disability. But that said nothing about my interests, about my likes and dislikes, nothing about my hopes and dreams. I’ve learned a lot in the past year, and while this story may seem like one of pessimism and sadness, by the end you will see it’s a story of healing.

While I did have friends growing up, it was often a struggle to get to know people. And even with the friends I did manage to make, I never really got out socially and did much with them. I was fortunate in not needing any shunt surgeries until I was 15. Then from 15 to the age of 20, I had at least one surgery a year. This contributed to the depression I’ve had most of my life. I know there are many others with SB out there who say, “Just one a year?! That’s nothing!” But to me it was new and scary and sad. I was hardly in high school, hardly saw my friends. In college, I had to drop out because of more surgeries as well as dealing with this growing depression/anxiety.

I’d always experience what I now know were classic symptoms of panic attacks. Every day. In situations that I was not comfortable with, which were most of them, I would start to sweat…I’d get a headache…my chest would get tight and start to hurt….my heart would beat faster and faster. I felt as if the whole world was watching me and laughing at me. I was afraid of meeting new people, of being in new social situations, afraid of getting stared at, laughed at, pointed at. As a teenager I even grew my hair down to my waist and had piercings on my face. But it wasn’t any sort of “rebellion” thing. These were my ways of getting people to stare at something other than what I thought were my glaring physical disabilities.

Depression. I had it big time. All the surgeries and all the medical issues only made it worse. My home life didn’t help much either. My dad was not a very nice man.* I’ve struggled with what to say about him in this story. He is such a big part of my pain and my depression. I’ll just say that while there was no physical abuse, there was verbal and emotional abuse every day. He said things, he screamed things at me, that you should never say to your child, let alone your child born with disabilities who already has a hard enough time in school being made fun of. “Why are you so stupid?!”  “You’re useless!”  “You were a mistake!” And I believed him. Growing up, your parents, especially your father, might as well be God. You hang on to his every word. And when those words are negative, poor self-esteem becomes the least of your issues. I don’t blame my mom. She was and is amazing. She was always there for everything. She was supportive and loving and she is truly the only one in my life who never left. I have been blessed to find my wife.** But growing up, my mom was the biggest source of love and support I had. I don’t blame her because I am adult enough now to know that life is complicated. It’s not as easy as “Your husband is mean. Leave him.” She was 23 years old. She was a housewife. She didn’t speak the language of this country. She didn’t know anybody. She also had my older brother to take care of. If she left my dad, where was she going to go? 

So I did the only thing I knew how to do. Stay in my room. Literally. Afraid to come out to eat. Afraid to even come out to go to the bathroom, for fear of incurring the wrath of The Father. And it wasn’t just as a child. I was 19, 20, 21 years old, unable to move out because of my physical disabilities and my “special needs.” I spent a lot of time in my room. Alone. Sad. Scared.

All of this started to change in August of 2002. My wife and I had been in our own home for a year. But I seemed to be getting more and more depressed. I’d cry a lot. I’d feel hopeless and often scared, but never knew why. That’s when I decided (and it was not easy) to finally get the therapy that 1 or 2 people always knew I needed, but that I never admitted to myself. I spent 8 months with a therapist. While I did learn a few things and did improve somewhat, it didn’t help too much. It helped me stabilize enough that I didn’t want to die, but not enough to really be happy. Therapist had recently gotten her Master’s degree, and had been working exclusively with rape victims and schizophrenics before I showed up. Heavy-duty stuff, but stuff that really didn’t prepare her to deal with a disabled man who was dealing with depression. 

In February 2003 I decided to discontinue therapy with her. I had gotten myself well enough that I thought about going to the National Spina Bifida conference in San Antonio that June. In the past it was something I would NEVER have done. I never participated in any of that. Not Colorado SBA, not the Adult group, and certainly not a national conference. I always thought, “Why bother? Nothing will change. I’ll still have SB. I’ll still have problems and nobody will change that. How is hooking up with a bunch of people in SBA going to help?” Still, I decided to give the national conference a try.

CONT’D on page 2

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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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