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The following post is an excerpt from my book Confessions from Disability Limbo released in the summer of 2021. Please enjoy.
Hello good people I hope everyone is staying safe. I recently remembered something the other day and I had to write about it. Walking has always been a very interesting subject for me. The short answer to your next question is no, I cannot walk officially. It takes so much energy to get my muscles to do stuff they don’t want to do. When I walk I usually throw up or pass out. I can only do it in short distances and in a therapeutic setting where it is safe. The following anecdote is pretty much the only exception.
My father’s little sister was getting married. I have lots of aunts and uncles but this seems like something I have to do. I wish I could tell you there was some overwhelming reason that drove me to do this. I just knew from the moment she announced her engagement I had to walk down the aisle. She wanted her only nephews at that point to be part of the wedding. Just like Rocky before the big fight, I spent months getting my body ready. This was going to be the longest I had ever and whatever walk.
I was never one of those kids who hated dressing up but there was a huge difference between walking in a pair of sweatpants and doing it in a brand new suit. There is something you need to understand about my “walking.” It’s a complete illusion. I can only step with one leg, the other one drags behind, just like a zombie on TV. Then I pull the backward-facing walker to keep my balance. The secret sauce however is my orthotics that stabilize my legs into one position so they don’t buckle.
I have no idea what I had for dinner yesterday but it has been over 20 years since this event and I still remember every step. I know for my family members seeing the 10-year-old little boy walk was more important than seeing the bride on that day. No one had ever seen me walk before. The reversal was easy enough.
My mother would set me up at one end and I would walk to my father at the end of the aisle. There was only one little hitch. The velcro holding my legs to the Orthotics was wearing out. Normally, this is not a big deal, it happened to me all the time. We would stop at the store and slap on new velcro. With all the hustle and bustle we never made it to the store.
The velcro lasted a total of 3 steps before it gave away and I had no support or stabilization whatsoever. I remember the church felt huge and it was incredibly hot. I started out walking pretty strong on pure willpower. I remember swallowing just a little bit of vomit. Halfway through I hit the wall hard. I start to see black. The church seemed empty. I have no doubt I almost fell at least twice.
“For we live by faith, not by sight.”
2 Corinthians 5:7 NIV
It is funny, as a child you go to church but it’s difficult to understand the true meaning of God. I know now that was the only way I made it through that walk. I must say I’m not trying to force religion on anyone but God never abandons us and this was the first time I deeply felt his presence. I collapsed in my dad’s arms when I got there. Don’t ask me how the service was. I was in exhausted hay sipping on a bottle of water. As for my aunt and uncle, they are happily married with two of my favorite cousins both ready to go off to college.
I hope this story can show people you can do whatever you want. The disability will be there always but it does not have to stop you. Thank you to anyone who read through this all the way and have a wonderful day.
Disability Limbo Newsletter
I started Letters from the Limbo as a way to connect with you on a deeper level. Twice a month, I send out an email filled with personal anecdotes, professional updates (like my recent reelection as Vice Chair of the NJCDD), and the policy insights I don’t share anywhere else. This isn’t just another email—it’s an unfiltered look at the life of a disability advocate. Join my community and get an exclusive, honest look at the work that matters
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