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 😁

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.”

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