My Body Has Always Been Changing. Now My Mind Changes with It.

My body is my best friend and my worst enemy. No matter where I go, it’s there. Except when I dream. I don’t ever see my body. Don’t even know if I’m a wheelchair user in my dreams or what my body looks like either. How fascinating! Because in my dreams, I’m still Nathasha with osteogenesis imperfecta.

My entire life I’ve lived with osteogenesis imperfecta. My first school was Dr. Henry Viscardi School. All the students had a physical disability. No social media to tell me that I’m not enough. Therefore, I don’t have any traumatic school stories because my disability wasn’t the main topic in my education nor with my peers. My frequent fractures and scheduled operations were par for the course. No one let me believe it was a big deal.

The visiting homeschool teacher, Mrs. Singleton expected me to have my work completed. My mom expected me to help fold the laundry even with a fractured limb. When I returned to school, my gym teacher, Joy expected me to push my laps around the basketball court. My body was accepted by everyone. I was a young girl living my best life ever. In between fractures and operations, I played, swam, danced, painted, gardened, traveled, and laughed with family and friends.

My body wasn’t my concern my first ten years of life. My mom and dad carried the worry. If they had any, I didn’t see it during those years. I’m really grateful for that. Too many times, social media has posts about parents worrying about their disabled child and complaining about the work they do for their child. Garnering sympathy. But I think, do their kids know this? It must make them feel guilty for being disabled. It’s not as if they chose this life. But that’s for another topic.

My Left Arm

My left arm. Let’s discuss this. The story is blurry. I was young. Maybe 7 years old. I remember I hurt my arm during a holiday. Maybe New Year’s Eve. Maybe Christmas. The ER holiday doctor put my arm in a sling instead of a cast. I’m sure my mom wishes she had driven all the way to Hospital for Special Surgery that night.

Once healed, the arm bowed so much that I couldn’t extend it too much. My orthopedic doctor, Dr. Leon Root had a solution. I was 8 years old or so. Dr. Root had this habit of explaining surgeries by drawing the process on the patient’s table with the long paper that covered it. I will never forget how he drew my arm, bow and all, then said he was going to BREAK IT here, here, and here. Let’s read that again! The doctor said he was going to “break” my arm on purpose. Yeah! That got me!

Then he said he was going to put a rod through it like a “shish kabob.” I’m from New York. I know shish kabobs! My face must have spoken before my mouth. Dr. Root smiled while telling me that I would be asleep while it happened. However, I’d wake up with a broken arm.

It was the first time that I had ever spent the night in the hospital without a broken bone. I loved it. My doll, “My Friend Mandy” stayed with me throughout the entire hospital visit. In fact, we both woke up from the operation with casts on our left arms.

The healing process post op was the most vivid memory I have out of all of my childhood fractures. Why? Because it took a village to get me back into moving it like before it met with Dr. “Holiday” and his splint. My abuelita (grandmother) would massage my arm while pulling it to straighten it out. It was her effort into my post op physical therapy. My mom took me to the hospital’s indoor pool for physical therapy. They would place the floating toy boats a little out of reach and tell me to grab one. I would use my right arm, they said no. Then I used my left hand to create waves that would bring the toys closer. They said no. It was frustrating. But when you’re younger than ten with osteogenesis imperfecta, you know the drill.

My Body Walking and Other Challenges

Between my mom, my abuelita, Joy, the hospital’s therapy, and the school’s therapist, Bill, I was doing well. In fact, I was doing so well that I was using crutches and moving on to a walker with wheels! WHEELS! That’s big news!

But I fell out of bed one night, fractured my leg. Another operation for the rodding. The healing process was too arduous. My mom didn’t push the whole “walking” on me. Now the therapy would be for the purpose of healing. Again. I’m a kid. No problem. I don’t remember being traumatized. I remember how I hated therapy with Bill at school. I remember saying that the hospital floor was too hard to walk on. Not everything was a crisis. Not everything was glory. It was life.

However, during my 5th grade year, my mom said I needed to use a back brace. It was horrible. It was painful. It was too much. When we moved to Miami, I got to say bye bye to the brace. Yes, I have scoliosis. It was 1981. I didn’t think much of it. My happiness was knowing that I wouldn’t have to wear that horrible contraption. It was worse than the white orthopedic shoes and leg braces.

Puberty hit. I stopped fracturing. Only fractured twice, after falling out of my wheelchair each time at school. Once, a boy jumped over my chair to get to class. My wheelchair flipped over. The second time, my front wheel got caught in those pothole bumps. That’s it.

I wasn’t raised with “be careful because you have OI” or “don’t do that because you have oi.” Therefore, I never needed to think about my body as different. I knew I was different. Oh well. I remember having a kid ask me why I was in a wheelchair and I said because I can’t walk. Then the follow up question. Why can’t you walk? My reply. Because I can’t. The kid was satisfied and I was too. Sometimes you don’t have to know why. That was the time.

My Mind Didn’t Notice My OI Body

When I was a teen, junior high school was 7th grade, 8th grade, and 9th grade. My favorite time. I had crushes like other kids. I experimented with eye shadows, lip glosses, hairstyles, and fashion like every other girl. Unless people actually went out of their way to point out my differences, I didn’t see them. Don’t even ask me if I thought I was ugly because you don’t know my mom. She would look at the mirror, smile, and in Spanish say, “Aren’t you girls lucky to have a beautiful mom like me? That’s why you’re so pretty too.” So you already know what I saw when I looked in the mirror. I saw a beautiful girl looking back at me.

Then high school came along. My nerd vibe was strong for the new high school. This particular school was all about being cool. Miami Vice vibes were everywhere! Big hair! Don’t care. I stuck out big time! Not because I was in a wheelchair. Not because I had OI. Because I wasn’t trendy enough. Lucky for me, Janet and I became friends. Janet didn’t point out my OI, short stature, or wheelchair. She thought I needed a new makeover if I was going to catch my crush!

Off we went to the stores looking for clothes that didn’t scream nerd. Then it was about the make up. Hello, black eyeliner! While I never truly fit into that school’s social circle, I found my groove. I joined clubs like the Key Club, Youth Crime Watch, and Law Mock Trial team. Earned a varsity letter in wrestling. While I never got that “crush,” it never occurred to me that it was because of my body, my oi, or my wheelchair.

Fragile and Small Adult Body

As many of you know, my college years at the University of Miami weren’t exactly a stroll in the park. It’s the one place where my body was a problem for others. No ramps, no bathroom doors, no elevators, and no rights. You can know more about it on my podcast, Audaciously Speaking.

I don’t want to leave you the impression that my body wasn’t fighting me every push of the way. If it was giving me grief, I was fighting back. When I fell out of the University of Miami’s elevator, my body crumbled. But just like Sylvester Stallone’s iconic character, Rocky Balboa, I wasn’t going to give up. I worked every day to build up my strength. No way was I going to get knocked down.

Before I go on, I need to say something that you need to really understand. Really, really, really understand. Understand? I’m not like all the other OI people. And I’m not speaking on their behalf. I’m sharing my experience according to my circumstances.

There are many people with osteogenesis imperfecta who don’t have my level of strength or resilience. There are many people with OI who are stronger than me. We can’t make these generalizations about our bodies the way we see on websites. Please. Understand that.

Okay, you’re still reading. Then I can proceed. It wasn’t until my late 40s that my bones decided to crumble faster than the Berlin Wall. I now understood what some people with OI, people who were way younger than me shared about their body issues. This was new to me because the only times I ever felt like I was crumbling was when I fractured. I wasn’t experiencing chronic pain. Or was I?

My Middle Age Body

Luckily, I didn’t have to second guess myself. Since I kept a journal, I referred to it. Turns out, I would jot down my feelings of fatigue, soreness, and outright pain. I wasn’t even 50 years old in the journal entries yet, my body was having an internal war with itself. Now I’m 54 years old. The battle continues.

Except now, it’s my mind that has the most difficult journey. There are certain truths that I must come to grips with if I want to have a happy, healthy, and productive life on my terms.

My body loves mornings, early mornings and refuses to move after 5 pm in the evenings. No more jumping to meet friends for a late movie or drive to see the sunset. If it’s not setting outside my window, I’m perfectly fine imagining it. People explain that it’s because I’m 54 years old. But it’s not my biological age. It’s my bones. They’ve cracked so many times that my body isn’t that of a 54 year old woman. It’s more like someone in their 80s or older.

Positive Mind and Stubborn Body

No one has thrown in the towel. My friends and family will do activities with me in the morning so I can continue my social butterfly status and maintain a healthy lifestyle. Of course, I continue to teach. Working definitely keeps my body functioning better than if I stayed home watching the wheels go round and round.

The biggest difference these past few years is acknowledging when it’s time for me to relax. You see, if I don’t do that, my body will rebel. My ribs will crack, my arms become weak, and my back will kick me hard. Thankfully, not all at once.

This doesn’t mean it’s the end of the road for me. It means I might have to take detours every now and then, but I will get there. What is there? Wherever I choose it to be.

If you’d like to support the audacious vision, you can email me at nathasha@audacitymagazine.com or you can donate directly by clicking here.