My Story


Before the conference I had never even seen another adult with Spina Bifida. I knew they were out there but I never saw or met one. I was always so isolated and alone. And when I went to the Spinal Defects clinic, it was at Children’s Hospital. I didn’t know any adults living with SB. But when I got to the conference, I saw and met so many people. Some were in chairs, some ambulatory (like me), and even some professionals. I met a doctor with SB! He was a presenter at some seminars. I met the president of our local CSBA, Tom Baroch. It was all so exciting!

I attended one seminar in particular that changed my life. The class was on NLD’s (non-verbal learning disabilities). The doctor with SB, Tim Brei, was presenting it. He began by saying that not everyone with SB has all these issues but most people with SB share many of these traits. He started listing: We aren’t so good at math. We have trouble with too much visual information. We tend to write everything down. We make lots of lists. We are very verbal, great spellers, and great at subjects like English. In fact, oftentimes we are labeled as “Gifted” when we are younger because of our superb verbal skills. Later on though, we are overwhelmed by all the subjects we are not so great at. We have trouble processing too many visual cues at once. He said all these things that everyone in the room was giggling at, because we could all relate. And I giggled too. But also, I felt for the first time in my 27 years of life, less alone. I felt like I belonged. I thought to myself, “It’s not just me. I’m not stupid. I’m not a freak.” And I felt vindicated. Every time my dad would call me names for not being able to follow a simple set of verbal instructions, he was not only wrong morally, but wrong scientifically. NLD’s cause us to forget half the list before we even start because of the fact that people with NLD’s tend to think in words and not pictures. But the human mind works just the opposite and can hold more pictures than words, so we end up forgetting half the list. And it FINALLY made sense to me how I could feel so smart and so stupid in high school! How I could have “smart” friends and talk about “smart” things and be in the “smart” classes….and yet, not understand a lot of what was going on in most of those classes! And every time my dad called me names as a child for not being able to find the hammer in our garage, it wasn’t my fault. I never found the hammer because the moment I walked into the garage, I was overloaded with too much visual information. I never knew where to start looking.  

That one class started to change everything. I began to understand more about myself; why I was so good at English, so bad at math. Why I could just talk and talk (as evidenced by this story) and was so bad at finding the car in the middle of a huge parking lot (too much visual stimuli). Why I can’t read maps or blueprints to save my life but I spent my time in elementary ordering 800-page “Mysteries of the Unknown Universe” books from Time-Life instead of reading the latest adventure by Judy Blume. How it was that I felt so smart and so stupid in high school, both at the same time. I finally felt “normal”. I finally felt peaceful. I finally felt like I “belonged” somewhere. I finally felt………Home. 

After that conference, I came back, called up Tom and all the other wonderful people in the CSBA Adult group and asked if I could join. I wanted more of that feeling. I wanted more of that happiness and friendship and feeling like I was part of a group. I also really applied myself and tried to find another therapist. With the help of a wonderful and amazing PCP I had, and the psychologist who worked with him, I found a wonderful psychologist. She has a PhD. She’s been doing this a long time and has dealt with many people suffering from depression. (It’s SO IMPORTANT to find someone who is qualified to handle your particular issues!) It’s been amazing. She helps me realize things I never knew were there. She doesn’t change my way of thinking for me. But she gives me tools to do it myself. We’ll go back and try to figure out where my unhealthy ways of thinking came from, and try to change that thought process. It’s great! And the CSBA Adult group has been so good for me. I enjoy that feeling of belonging. Both those things, therapy and CSBA, has helped in other ways. I get out more. I do more things. I am active. I don’t notice if other people are staring. I don’t care anymore. I just want to live life. I finally realized that mental health is a very real issue. It’s real and it’s not that you’re “crazy”. It’s not that you just need to “snap out of it.” Whether its chemical, whether it’s environmental/situational, whether it’s both, “Depression” doesn’t equal “crazy”.  And there is help out there.

So is life perfect these days? Did my SB suddenly and magically go away? Do I have all the answers? Is life pain free now? The answer to all those is NO. Life still has its ups and downs. I still have some very bad days. Every once in a while, I wake up sad and think, “What’s the point?” and go back to bed. But those days are fewer and farther between. I have a lot more good days than bad days.*** I am more optimistic about my life and my future. I make plans. I never used to make future plans. I just always figured I’d die young. But meeting people in their 70’s with SB who are still active, and optimistic and happy, this inspires me. So no I don’t have it all figured out. But I believe. And I’ve stopped asking “Why me?” and now I just think, “Who knows why me. I believe in a god and I’ll ask Her when I get there. In the meantime, I’m going to live.” Every day is a new chance, a new opportunity to live. And if I can get one more person to experience a little more joy in their life….if I can get one more person to learn a little bit more about NLD’s and think “Hey that’s me. He’s describing me. Maybe I’m not alone”……if I can get one more person to join CSBA, and specifically to join the Adult Group….I did good. If I can get them to join, and feel the friendship, the camaraderie, the happiness that I feel in being part of the group, I did good. More importantly, if I can get one more person to recognize signs of depression in themselves and I can help remove the stigma of mental illness so that they go get help…I did what I set out to do.     

PS & FYI….my mom went back to college at 40 and has a Masters in Education, is now a teacher, has plenty of friends, is happy and is doing just fine.

*Update 2019 Have since remarried

**Update 2019 Long story short, as sometimes happens in life, a series of events occurred in 2011 which led to a dismantling of old ways and a rebuilding of my relationship with my dad. Plus I continued therapy. Plus, he’s old and mellowed out now.

***I’m in my 40’s and have lived enough life to understand that some people, well, our brains are just broken. Depression and anxiety, my constant companions, will always pay occasional visits. I wish it were different. But such is life.

This entry was posted in Disability Advocacy, My Life (or "More About Me Than You Ever Wanted to Know"). Bookmark the permalink.

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