What Spina Bifida Taught Me About Myself

By: Jamila Gomez

A great friend of mine proposed an interesting question to me some time ago:

“How do you find your ‘happy’?”, she asked.

I was perplexed at first. “My happy?”, I replied.

She responded, “Yeah. You know — the things that make you happy that can’t be found in a person or people.”

The answer to that question had me in profound thought for the remainder of the day. I realized in that moment that my happiness was contingent upon other people. I love making other people happy. I love seeing people smile. That is what makes me happy — that, chocolate and music, of course. I even bought myself a scooter after reading scooter reviews, to treat myself with a jolly ride every now and then.  She asked how exactly I make others happy. That is something I can’t quite answer for others, but I do believe it has something to do with my personality and my friendly nature. I make it a point to make sure people know that they have a friend and confidant in me. I put other people first. I am the ear, the shoulder, the encouraging word.

I have been this way my entire life. I was born with a birth defect called Spina Bifida, which has four different forms: occulta spinal dysraphism, occulta, meningocele, and myelomemingocele, or cystica. I was born with myelomeningocele. It is the most severe form. In this form, the portion of the spinal column that has not merged in the vertebrae permits the spinal cord to protrude through an opening. The meningeal membranes covering the spinal cord also protrude through the opening, forming a sac encircling the spinal cord and nerves.In other words, at birth, my spinal cord was sticking out of a hole at the small of my back.

The complications of Spina Bifida differ for each individual who has it. For me, one of my complications is fluid build-up on my brain, which is called hydrocephalus. In order to correct this, I had what is called a shunt placed on my skull. The shunt goes down to my stomach. One has to be careful because the fluid can build up to the point where the shunt can get blocked, which results in what can feel like an extreme migraine. If a shunt gets blocked, it will have to be revised, or replaced. I have had my shunt revised only once. Other complications include cognitive issues, limited control of bowel and bladder function, sensitivity to the sun, a latex allergy, and inability to walk or stand for long stretches of time.

I was picked on for much of my childhood. It was not to the point where it got physical, but kids were very mean to me. I spent kindergarten in St. Louis in a wheelchair and I had to ride that bus we all know about. Being the only Black girl in my class, I had one friend named – a white boy named Chad. When my family and I moved to Atlanta and I began grade school, I only had a teaspoonful of friends. The number of associates was triple that yet for the most part, I was very much off by myself.

The teasing was constant. My classmates, as well as other students, would call me names like “Dookie” whenever I had accidents, mock my limp, tell me I was ugly, and call me stupid when I didn’t grasp what was being taught as fast as everyone else due to my learning disorder. Some of the ‘mean girls’ pulled chairs from under me when I’d try to sit beside them, making me fall to the ground. The kids never put hands on me, though. I have never been in a physical fight, but their words left plenty of marks that have just recently begun to heal. The feeling of being made fun of for something that was beyond my control was something I would not wish on my worst enemy. It hurt. When you go so many years being told things about yourself on a regular basis, you start to believe it. I had become a victim of other people’s perception.

By the time I’d reached high school, I’d had nine surgeries. I’ve been able to walk since the age of two, but I’ve had complications that required three right-foot surgerie and was forced to  Buy mobility scooters and a walker after those surgeries. I’ve also had to endure two shunt surgeries, a stomach surgery, two spine surgeries, and one eye surgery.

Each scar was a painful reminder that I wasn’t ‘normal’. I never felt normal. The teaspoon of friends I had got smaller; my associates grew in number. People didn’t like me. They never took the time to get to know the real me, but didn’t like me anyway. It made me lonely. So much so that by the time I reached adult age, I found myself seeking acceptance.

I began going above and beyond the call of duty to be good to people. I tried to be everyone’s best friend. The “Golden Rule” was worn on my sleeve. It became the content of my character. I wanted to be liked. I wanted to be accepted – to feel normal. I want to always treat people the way I wish to be treated. Then it dawned on me . . .

I don’t even treat MYSELF the way I wish to be treated.

Wow!! Talk about an ‘a-ha moment’! The circumstances of my life had knocked me down so much that it had gotten to the point where I don’t think I’ve ever really loved myself enough like I should. At least not to the point where I was just overly good to myself. I don’t abuse myself or anything of that nature, but I’m harsher on myself than I need to be. Everyone is their own worst critic, but I’m the “Mommy Dearest” of myself. Why am I like this? Because I got it growing up. Never felt good enough, pretty, smart — none of that. The older I got, the more I believed what bullies said to and about me; what mean people did to me.

Now, here I am a little older,still believing people’s lies. I’ve finally had the epiphany, though, that nothing man says or thinks of me is a match for what God says and how He feels. I MUST begin to see myself the way God sees me. I have to keep in mind that I am His daughter, so I look like Him.

As I type this, my heart is beginning to fill because I’m finally getting it. I have a multitude of great qualities about myself. I don’t really have much reason to dislike myself, much less not love myself. Could things be better? Yes. But things could also be much, much worse. I’m quite blessed and it’s time I start believing I am.

Social media can be Heaven sent sometimes. My whole life, the only other person with Spina Bifida that I had ever known was a younger cousin, who happens to look just like me. It wasn’t until recently however that I was introduced to another Black woman with Spina Bifida who introduced me to an entire network of Black women with SB.

It can feel rather lonely out there in the world when you have a disability. But I am eternally grateful for this sisterhood. They all have one thing – other than SB – in common. They’re overcomers. They’ve shown me how to make my SB work FOR me and not against me. They have taught me the most important lesson I will ever learn and that I will forever pass on to any woman who struggles with something you can’t control: I am never alone. And neither are you.

Regardless of your storm, there is always someone who has weathered one worse and is willing to hold an umbrella for you. You always have someone in your corner cheering you on. But more importantly, you have to be that person for yourself first. Ask God (if you are spiritual) to give you the strength, courage, and wisdom to weather the storms of your life. It is then that you learn just how powerful you’ve always been.