Dis-ability to This-ability: Rising Above Life While Living with Spina Bifida: A Memoir

By Meetra Nahavandi

Meetra Nahavandi grew up in Madison, Wisconsin in a loving home surrounded by her parents and older brother. From the beginning of life, she was met with multiple challenges; emergency surgery to repair myelomeningocele at birth, surgery to relieve hydrocephalus at nearly 3 months old and learning to walk at two years old with a walker

• Language: English
• Publisher: Rise Above Press
• Release date: Feb 15, 2023
• ISBN: 9781088092156

Book preview

1

A Parent’s Love

This is it.

This is the end…My two years of life was leading up to this exact moment and it’s about to come crashing down.

It has to be. I’m heading straight toward a closed hallway closet going full speed ahead barely strapped into a toy doll stroller with just a light pink blanket wrapped around my tiny legs. By wrapped, I mean the blanket is literally just lying on my lap. There are no seatbelts. How is this regulation? I barely have the strength to support my oversized hydrocephalus-filled head to watch where I am headed, let alone make a leap for it off the death ride.

Thoughts race through my mind as we zigzag our way recklessly down the hallway, thoughts such as, I’m too young to go, I haven’t even learned how to walk yet! as well as Mom, Dad, someoneee! Heeelpp!!! Scared, right? Yeah I was, too. Now picture that scene but you’re one to three years old, you’re strapped into a toy baby stroller being barreled down the hallway with your slightly older and more energetic brother, Amir, at the hands of the reins. You barely have the strength or capacity to keep your head from being tossed backwards in your seat let alone hang on for dear life. You try protesting and pleading but all that comes out are babbling, bubbles, and gurgling noises, so there’s no way to avoid this unfortunate fate. All you can do is close your eyes, be scared out of your wits, yell out a blood-curdling cry at the capacity your baby lungs will allow and poop your diaper. As if the situation couldn’t get any worse, as we’re racing down the hallway of darkness and impending doom, we inch closer to what I assume is the ultimate fate of my whole body being thrown and smacked to the wall, Amir abruptly begins depositing me and attempts to eject me from the stroller like a dump truck dumping its trash collection. I don’t quite think we can call it safely, because as we reached the end of the hallway, he tipped over the stroller and ultimately would’ve dumped me onto my oversized still squishy hydrocephalus of a head. I was saved though by my belting scream of sheer terror which sent my mom racing down the hallway to my rescue scolding my brother at the same time all while handing the camera recorder full of evidence over to my dad. Yes, there is physical proof of this incident. Beware. Just kidding, I hardly remember the exact circumstances, I just recall being afraid after that point of anything that didn’t allow me to have my feet safely and firmly on the ground at all times.

Hello, fear of heights, fear of roller coasters, and the list could go on and on. Ahh, the fond memories of a semi-traumatized childhood. Just kidding, in all honesty, we were not far from the ground, nor was I actually thrown from the stroller, but, to a baby, can you blame me for screaming my head off? I thought I was going to be tossed, so my first reaction was to scream bloody murder. To a young child who does not yet have the capacity to speak, let alone walk away from situations, it was a traumatic experience to overcome.

The cherry on top is adding a physical disability called spina bifida and having a fragile head due to being born with hydrocephalus to the mix. Spina bifida, not to be confused with spinal bifida (spoiler alert: this doesn’t exist) is a neural tube birth defect that is caused by an incomplete closure of the neural tube of the spine, as well as an inadequate intake of folic acid during pregnancy. It is basically an opening in the back with the spine protruding outwards with the spinal fluid sac encased. There are speculations of other causes such as a history of seizure disorders, high body temperature during early pregnancy, diabetes, obesity, and poor nutrition.

In actuality, it’s difficult to accurately understand the why spina bifida occurs. Then again, spina bifida’s nickname is the snowflake disability because each case has such unique variations. There are four types of spina bifida, all with varying severities: closed neural tube defect, which is the least severe and is commonly not found out until much later in life due to it not having many effects on the body. Many cases are not diagnosed until the individual is in their forties or fifties. The next types are occulta, meningocele, myelomeningocele and lipomyelocele. Try saying myelomeningocele five times fast as a young child. You’d look silly even as an adult, right? Myelomeningocele (My-low-meh-ninja-seal) is the most severe variation which is caused by the spinal cord protruding through the opening in the spine resulting in partial or complete paralysis of areas of the body below the spinal opening. Oftentimes, the severity of the paralysis may result in the individual being unable to walk or often will have minimal function of bladder and bowels. Again, though, due to its unique nature, two individuals born with myelomeningocele may have completely different strengths and weaknesses that make them who they are. With spina bifida comes a variety of symptoms ranging from degrees of back pain, loss of range of motion, lack of flexibility, vertigo, and irritable bowel syndrome to name a few. That is what truly makes spina bifida the snowflake disability. We can’t forget the super sexy sway walk that comes along for the journey. This just happens to be one of the perks of myelomeningocele. Are you jealous yet? Thought so, and if not, well then let me have my moment on cloud nine and we’ll move on with our day.

I can’t say I’ve had this attitude for a long time; this was a mind change I had to shift into years ago. From what I recall, I altered my thoughts on my disability during my freshman year of high school. I had just finished five grueling years of bullying and torment during elementary and middle school. I wanted a clean slate. A redo from my elementary and middle school years, but I knew that was impossible, so I decided a coping mechanism that would be best was a mind-wipe. Part of that mind-wipe was my decision to skip eighth grade graduation.

I had endured being bullied for five years and now you want me to walk on a stage in front of all my peers to let them stare at my gait some more? I think I’m good, thank you, though. If only that was the end. The day after our eighth grade graduation, I entered study hall in the student resource center as I always did to get the extra support and peaceful environment I needed to concentrate. However, as soon as I entered, I was abruptly halted by my resource teacher questioning why I hadn’t been present at the event the night before. She stated that everyone was counting on me to be there; everyone expected me to show up, how come I didn’t tell someone I wasn’t going to go? If my teachers should learn anything about me during the school year, the most important aspect is: never ask me question after question. Unless you enjoy sending your students into anxiety mode, then be my guest, but that’s not exactly the technique I’d suggest to win over their attention and respect, just a thought. While my teachers weren’t all that thrilled with this decision, for me at the time, I thought I was doing what was best for my own mental health by not putting myself in another uncomfortable situation by facing my peers and hundreds of other individuals where all eyes would be on me.

I think I have my thoughts backwards. In being afraid to do public speaking, yet having a dream of becoming a motivational speaker, sharing my journey and positivity about rising above challenges with others throughout the world. I guess that’s why they say you should always strive to break free of your comfort zone, because nothing ever truly amazing happens within that bubble.

The only upside to the remainder of my time in middle school was when I was given the gift of getting a new family puppy the Sunday before I began seventh grade. We researched various breeds and tried to make the best decision on which would make a great family dog despite my mom being allergic. We sat every night with my dog book and went through each and every breed marking which ones were good family dogs and which ones were hypoallergenic. Pretty soon, we had narrowed down a breed list to Dalmatians, Maltese, Highland Terrier, and Cairn Terrier. Funny enough, none of those were the breed we decided on. I had dreamed of having a puppy forever and the day finally arrived, well, maybe.

The weekend before I started seventh grade, my family packed up the van to drive ten minutes to Deerfield, Wisconsin to go look at a litter of recently born beagle puppies. Beagles were not a dog that was on our list, but local puppies were worth looking at. I could hardly sit still the entire car ride; I was literally bouncing up and down in my seat. My parents kept reassuring me that we were just going to look at them and that no decision was going to be made today. Hehe…little did they know what was to come the moment I got my eyes on puppies. Seriously, I go crazy. I have to hold the puppy. Not want…have. There’s a difference between those two words and there’s no competition of want versus have when it comes to puppies and me. As we’re driving, I honestly have no idea where we are, but we end up in the countryside and pull into a long driveway to a farmhouse property with a barn and two machine-shed structures.

As we pulled in and exited our van, another family of four was packing up their vehicle with a puppy. The owners of the property met us at our vehicle and announced there was one remaining male puppy. I was both nervous and excited. I was going back and forth in my mind as to whether or not I wanted a male or female puppy. Honestly, it made no difference to me…I just wanted the puppy. As we walked toward the shed where the puppy was being housed, we walked past a truck with the puppies’ father sitting in the bed eagerly waiting a car ride. He had a goofy expression on his face. Upon entering the shed, we saw a gated closed-off area with a doghouse in the center surrounded by hay bales. Almost immediately and naturally the puppy darted into the doghouse to avoid being seen. The owner jumped into the pen and went on a cat-and-mouse game to scoop the young pup up for us to see. He was so adorable I thought I might actually combust. I kept telling my parents we had to have this puppy. Honestly, once I got my hands on him, good luck prying them off. Did I say I had to have this dog? Because I really felt like I needed that dog.

After about thirty minutes of spending time holding the puppy between us all and allowing my parents to talk about this opportunity, my dad finally said, Well, if we’re getting the puppy, we better get him now before I change my mind. Phew, I’m excited, relieved, and anxious all at the same time. On the way home, we thought of some names for him: Tracker, Snoopy, Chelsea (the young boy had given him this name). None seemed to fit him perfectly, until my dad suggested Buddy. Welcome home, Buddy. We got him home and gave him a nice warm bath to his dismay on our back porch while I called my friend over to see our new puppy. I was on cloud nine. I learned a lot from having Buddy brought into our family at a young age. I should have learned more, but I did learn more responsibility. I also learned that he ruled the house and what he wanted, he got. I think that’s how most homes are with pets. From the start, it was obvious I was in over my head when I pressured my parents into getting a puppy.

Needless to say, all of those sleepless nights I forced my parents to have because I couldn’t handle a crying eight-week-old puppy all night long were worth it. Whether my parents think it was worth it, I’ll let them decide. I will say though, Buddy gave us a run for our money from the very beginning. Being new puppy owners, we were not prepared for the howling, the whining, and having a newborn child living with us. By we I mean me. Initially, Buddy slept in a cardboard box since we didn’t have a crate or bed yet. In the beginning, due to his howling, we moved him into the garage, which did not last. Then, we tried the basement, which let me be the first to say, that is not a wise decision for an eight-week-old puppy and when that didn’t work and he was in my room at night, he ended up curled up into a tiny ball lying next to me on a towel.

I should have done this move from the beginning, because the moment I put him next to me, he fell right asleep. Over the years, he would sleep by my feet and I grew accustomed to having him there. We’d have a fair share of wars with personal space, but I grew to love having his body pushed against my leg. It was a sense of security and I loved falling asleep to the sound of his snoring and sighing. I knew the moment he gave a deep sigh, he was relaxed and about to fall asleep. As he got older, he had more difficulty in jumping onto the bed, so we provided a stool or chair to assist him when he avoided our help.

I can remember coming home from school each day and having him run up to greet me with so much excitement. All those sleepless nights, sharp puppy teeth, and howling truly made it all worthwhile. Throughout my school years, other than my parents, Buddy became that one true constant in my life. I knew I could come home from school at the end of the day and he would be super excited to see me and would be there to comfort me no matter what I had gone through in the hours we were apart. He really was a woman’s best friend and got me through some of my most difficult school years.

Upon entering high school as a freshman, it is already a scary and nerve-racking time, but again, add in a physical disability and it is ultimately a train wreck waiting to happen. On the first day of orientation, stress came immediately. The group had planned a scavenger hunt that had us walking all throughout the high school searching for clues and prizes. No matter where I am or who I’m with, scavenger hunts always make me nervous and uncomfortable. I do not walk as fast as others, nor do I want to come across as an inconvenience to peers who are on my team. Nevertheless, our group trekked on and to my surprise many of the upper classmen in our group were supportive in assisting me the best they could, which helped make it a fun experience for everyone. Some even went as far as to joke around and request a dollar if we asked for directions or a hint to our clue. Some of us, thankfully not me, were gullible and gave in to the upperclassmen and paid them to give us directions to our clues. However, they gave us false directions. I learned early on into high school just how cliquey and segregated school truly was. I felt like a zebra going into a pride of lions as I walked into the cafeteria day after day. I purposefully tried waiting until the majority of students were on their way to class or I took the back staircases to enter the cafeteria so the hoard of students weren’t all staring at me as I made my way down the grand staircase that was dead center to everyone’s eye line. Did I do this for all four years of high school? No, but for the first year, this was my coping mechanism and it worked for me. I requested to be allowed to head up earlier than my peers, I took the elevator when I knew my legs wouldn’t make it to the third floor, but day after day, I showed up. I kept pushing. Although freshman year rapidly became a reoccurrence like middle school, I was determined more than ever to not let it affect me or get me down.

I was determined to take control of what was happening and stand up to the bullies that were tormenting me day after day for how I walked, my size, etc. I promised myself this would not carry on anymore. I was going to be the voice for the voiceless and stand up for what was right. Enough was enough. I took matters into my own hands. By my sophomore year of high school I stood up to the taunting, mimics, and tormenting from my peers. I made friends with upper classmen which helped aid the bullying to subside quicker, but ultimately, it was up to me to decide right then and there if I was going to let the voices affect me or not. Words are only words and we can determine if we allow them to affect us.

Another shock occurring during my sophomore year of high school was the passing of my maternal grandmother, Lola, during spring break. That was one of the most devastating moments in my life. We drove up to spend the last few days of her life with her once she went on dialysis and were right alongside her to say our goodbyes as she took her last breath. As much as I was grateful she was no longer suffering, the loss and pain I felt in my heart was unlike anything I had ever felt. This sadness only made coming back to school after spring break that much more challenging. I was trying my best to cope with the loss we just witnessed, but honestly, I couldn’t comprehend mentally. At least at school, my brain could focus on school and take my mind away from grieving for a bit, but even then, high school came with its fair share of challenges to rise above. Don’t get me wrong. The story does not end here with me living happily ever after for the remainder of my high school career. However, it does take a positive turning point.

During my sophomore year of high school, in math class, I befriended an upper classmate who needed help better understanding portions of the unit. In a way, in turn, he then became my freedom to no more teasing. Picture a 5’8 football player next to little ol’ me, just standing shy of 5’3. Would you dare tease me then? Some people did, but it was then, during my sophomore year that I stopped letting what others said or did affect me. It was through this action, that I gained a whole new level of freedom, confidence, and understanding of my purpose on earth for the future and the remainder of my time at school. There were challenging days ahead, but through this action, I found a voice within I never knew I had. A voice I knew I had to use to help others who went through similar situations. I knew I could use my voice and experiences to help someone else who may be in a similar situation or who may feel alone. We are never alone, no matter how we may feel in the situation.

Growing up with an older sibling, our family was always on the move and onto one challenge or another. From a young age, I can recall going to Devil’s Lake State Park and going hiking, climbing, dragging myself up and over boulders to catch up to my brother and dad as well as swimming, kayaking, and so much more. From a young age, I had no fear (in reason). I wanted to test my body as much as I could to keep up with the rest of my family. I wanted to show myself that my body could do anything I put my mind to or anything my parents challenged me to try. Often during those challenges, I got myself stuck. Thankfully, my parents were not far away to help me brainstorm and work out how to accomplish this challenge. I truly believe that through this process at a young age, it has helped me get out of a variety of challenging experiences I’ve encountered as an adult. However, I wasn’t met with this same teamwork when it came to friendships. I felt more like an inconvenience by holding people back from doing what they really wanted to do. They want to go bike riding? Unfortunately, with my lack of balance, I didn’t learn. Go rollerblading? Balance required. Hiking a difficult passageway at Devil’s Lake? Guidance needed.

I always felt like I was holding people back from doing what they truly wanted. I know it wasn’t exactly true, but it sure felt like such. I felt like the only way I could participate in challenging experiences was with my parents, since they always support, guide, and assist me when necessary. Even simple tasks such as going out in the community, I had difficulty climbing down higher stoops and curbs without assistance because my brain would overthink the height which causes my body to tense up thus causing a challenge to step down. To this day, at thirty-three years of age, I am not ashamed or afraid to ask for help when stepping down from a curb. I try to do most of them on my own and prepare myself ahead of time best I can, but if asking for assistance will get me down quicker, then so be it. It is just one of the ways I work around my challenges. Ninety-eight percent of the time I look for the ramps to walk up instead of overthinking the curbs, but if that’s not possible, then I get the assistance needed.

There will always be one challenge or another in your journey. Some paths may take you on more roadblocks than you’d like to encounter, but by overcoming them and working through each one, you become a stronger person and learn something new you may not have known about yourself. Accept these challenges with open arms. That’s not to say you can’t or won’t struggle and take steps back, you most likely will, everyone does. But how you choose to move forward is what really makes all the difference. The mind plays games when you go through difficult times. But if you can push past those moments, you will become stronger and more resilient because of them. Your true friends will support you and include you in all aspects of life by standing with you when you need them. Your circle will always support you, no matter what assistance or guidance you may require. Nothing worth having comes without a fight or a challenge. But part of that has to come from within. You have to truly want to reach your end goal and with that mindset, you’ll never fail. Ever.

Each of us will experience a challenge at some point in our lives. Write down three challenges or goals you have for yourself that you’d like to accomplish this year, this month, or even this week. Do you have goals that will allow you to step out of your comfort zone to rise to a new level?

How will you overcome and rise above yours today? Are you ready to get uncomfortable and rise to your fullest potential?

2

World’s Greatest Pick-Up Line

How are you able to do the plank without hurting your toes? will go down as the greatest yet cheesiest pick-up line in the books.

Little did I know just what I was getting myself into after clicking send on a comment to a random young man’s Instagram photo. I happened upon his page after searching for fitness tips while living with spina bifida. I was impressed with his fitness photos and all he was able to do, that I wanted to know more. But this move was definitely unlike any other move I’ve ever made in my life leading up to this moment. I have always been the reserved, quiet, keep to myself, and not bring more attention to myself than necessary type of person, let alone talk to a guy. My personality has definitely been shaped by my experiences in the past, but like everything, it is a work in progress. This quick thinking send was completely out of my comfort zone but also quite thrilling. I didn’t have to wait long either. Within a few hours of commenting, he responded and thus started a long night of Instagram messages which turned into months of talking on Snapchat, WhatsApp, and finally Skype. After four months of chatting online and meeting each other’s families the best we could via a screen, we agreed to meet in person to see if the feelings were real or not before continuing our online long-distance relationship and making it official.

The week leading up to when I was planning to tell my parents about us, my nerves were so high. I am definitely an anxious overthinking person and this was one of those moments that had me on a serious anxiety panic attack high all week long. I thought I’d be the most nervous since Derek would be coming to Wisconsin first, but leading up to the evening of our first official in-person meet, it became clear who was the more nervous of the two of us: Derek. Honestly though, can you blame a guy? He had to put his trust in someone 5,375 miles away that they’ll be who they say they are on camera and vice versa. We knew how we felt about each other from our messages and nightly Skype calls, but only time would tell how this next chapter would go for the both of us meeting in person face to face for the first time. Do you know someone who would travel to another continent to meet someone they had met online? Sounds like those crazy 48 Hour special stories you see on television, but spoiler alert,