More than 15 years ago, I worked out at the gym four days a week, two hours each day. Despite moving around in a wheelchair, my arms and upper body were so strong I could easily move myself in and out of my mother’s Chevrolet Suburban SUV.

But when I was 24, I faced the lowest point in my life. I spent over one month in a hospital. I needed three surgeries and even spent more than a week in the intensive care unit.

I was born with Spina Bifida, which is a Latin word meaning “split spine,” and that spinal rupture caused most of the nerves in my spine to become damaged.

When I was born at Garfield Hospital, my mother didn’t realize how serious my condition was.

“I was scared, but…the hospital put me under the impression that Children’s Hospital in Los Angeles was going to fix you up. Then, I would be able to take my baby home,” she recalled.

Lasting effects of hospital stay

In December 2007, I had a urination issue that required the doctor to puncture a hole below my belly button and the medical team soon discovered other things wrong with me, requiring more surgeries.

After my hospital stay, I had lost a great deal of weight, muscle mass and strength.

It has been almost 15 years since and I am still trying to recover from it.

I have managed to gain most of my weight back. I’m still struggling to get my strength back, and it’s something I have worked for every day of my life.

But, at almost 40 years old, I’ve slowed down quite a bit.

I am classified as paraplegic, and as I have gotten older, I’ve accepted that there are things I need help with, as frustrating as it is. That is just a part of my life. 

Spina Bifida types, prevention and treatment

Last month was Spina Bifida Awareness Month so I figured sharing my story would allow me to raise awareness about it, including the signs, treatments and preventative measures.

There are three different types of Spina Bifida: Occulta, Meningocele, and Myelomeningocele. 

Myelomeningocele is the most common and most severe form of Spina Bifida — and that’s what I was born with.

Spina Bifida is a Latin term that means split spine. When I was born, my spine was exposed or open and because that happened, it caused most of the nerves in my spine to become damaged.

Famous people like musician John Mellencamp and actor Rene Kirby were both born with milder forms of Spina Bifida.

Early 1980s technology and modern medicine were not as advanced as they are today.

Expectant parents now have the option to find out whether or not their baby will be born with a birth defect through an amniocentesis procedure, in which a doctor sticks a needle in a woman’s belly through the amniotic sac and extracts a sample of fluid from it. 

When I was born in the early 1980s, my mother didn’t have that option.

By the time she was pregnant with my brother, Jake, in 1997,  that procedure was available.

He was fine.

Nowadays, Spina Bifida can be corrected through surgery while the fetus is still in the mother’s womb. A doctor goes in through the amniotic sac and closes the fetus’s back with sutures. 

Now, it’s also known that the condition can be prevented by consuming 400 micrograms daily of folic acid, now available in many prenatal pills.

Another way to get folic acid is to eat a lot of dark green or leafy vegetables like broccoli or spinach.

“I just knew about prenatal vitamins. I learned about folic acid after the fact,” my mother said recently, adding that she was only 19 when she had me.

Educational goals

My condition led me to have two dozen surgeries and other non-surgical procedures, numerous hospital visits and doctor appointments.

Despite having the severest form of this chronic disease, I walked using a walker and leg braces for a few years as a child.

I have been a wheelchair user for the past thirty-three years on a full-time basis.

My brother, Jake, said he was scared the first few times I was in the hospital but eventually “got used to” it — much like having a brother who was disabled didn’t feel unusual to him.

“I was born after you, so it’s always been my normal. I remember when I thought everyone had a sibling in a wheelchair. Because when I first went to [my childhood friend] Jeremy’s house as a kid, I thought it was weird his brother wasn’t in a wheelchair,” Jake said.

I graduated from high school in 2001 and spent a few years at Mt. SAC before being told by my cousin that college was not for me.

Disheartened, I took some time off before deciding to go back to college, this time at Chaffey College.

I spent seventeen years there. I was determined to get my degree and I finally did, graduating with an Associate of Arts degree in Journalism in May 2022.

My educational goals didn’t end there. I hoped to transfer to a four-year university.

I was at home when I got the email that led me to realize I was on my way.

It was from Cal State Northridge and said I had been accepted.

“Mom, I think I’m going to cry,” I said. She came into my room, and I told her the news.

She smiled proudly and gave me a big hug. Little did I know that I would also get accepted into four other schools, including the one I chose, Cal State LA.

Some days are hard. I prefer using a manual wheelchair to keep my arms strong but have had to use an electric wheelchair to get around campus, including going up a steep hill for one of my Television, Film & Media Studies classes.

Sadly, people like me who are born with Spina Bifida aren’t expected to make it past high school due to learning disabilities that can come with the chronic illness.

Despite being  physically challenged, I am determined to prove that anybody can do anything they set their mind to.

In my case, that’s earning my bachelor’s degree in Journalism and a minor in Creative Writing — with my determination and with the big guy upstairs by my side.