My Disability Story

I have sat down to write this piece countless times in the last year. It’s hard to write a story that has been playing out since I was born, a story that’s still being written. I keep having trouble figuring out how to start this, when really, I know exactly how it needs to begin.

I am disabled.

I don’t know why that’s a sentence that in my adulthood, I struggle with. I’m not ashamed or sad, not embarrassed or trying to hide it. It’s not a dirty word. I think sometimes I feel like I don’t deserve to say it. I spent years trying to disprove it. I tried out for teams for sports I knew I couldn’t play. I’ve walked further than my known limit and spent the next day bedridden, only because I didn’t want to speak up. I hesitate using my handicap sticker most days. When you’re growing up, you just want to fit in. But everything about my physical being was designed to stand out.

I was born with severe clubbed feet. It’s a condition in which feet are twisted out of shape or position. For me, rather than facing forward, my feet were positioned inward. Clubbed feet can be extremely debilitating and affect how your whole body moves, especially a growing body. I had serial casting as a baby to try to correct it, but it didn’t take. I spent years in physical therapy, having my feet painfully manipulated. I had a few procedures, I was never without a leg brace, ankle brace or foot inserts, all fitted to my bulky orthopedic shoes. I wanted jelly sandals more than anyone should ever want jelly sandals.

In fourth grade, I underwent two tendon transfers, one on each foot. By moving the tendons, doctors hoped my feet would have more flexibility and a full range of motion. I spent most of that year in a wheelchair, recovering from each procedure. It was incredibly painful, both physically and emotionally. I could barely do anything on my own. Two of my classmates, Laura and Clarence helped me day-to-day. They pushed me in at my desk, back-and-forth to different classes, and out to the sidewalk at recess. I mention this because I’ve been thinking a lot lately about the responsibility put on two other children to help me, and it brings tears to my eyes.

After getting the cast off from my second transfer on my right foot, I was elated to gain some of my freedom back. I was excited to walk around the halls, and learn to move with my new feet. About two weeks later, I asked my teacher if I could use the bathroom. Walking back to class, I tripped over my new bulky sneakers. I tried, but couldn’t get back up. I crawled back to my classroom. My mom took me back to the doctor the next morning, I had snapped the very tendon they just fixed. I had an emergency surgery the following morning, and was back at school in my wheelchair within a week.

Fourth grade was the beginning of a youth filled with surgeries, doctor’s appointment, pain. The clubbed feet had been mostly corrected, but I had a plethora of other orthopedic issues. I developed Osteopenia from all the time off my feet and in hospitals. My bones were weak, my feet and legs usually in pain, making walking still difficult. In middle school, I would fracture my ankle, get stress fractures in my feet. I had more procedures, more physical therapy, still no jelly sandals.  My mom, sister and I trucked along and all of this became our normal.

By the time I was a freshman in high school, I had started dislocating my knees. If you have ever dislocated a knee, you know the pain is incomprehensible. It’s excruciating and bizarre to feel your kneecap in your thigh. The second time it ever happened, my friends and I were throwing a summer party in my friend Leah’s backyard. We sent out handmade invites, had food and planned games. We were playing capture the flag when I stepped to turn around and felt it immediately. I started to fall to the ground, and my boyfriend at the time caught my head from hitting the pavement. I was screaming for someone to call an ambulance, and heard my friend Sara panicking to call one. When one arrived, they started an IV right in the driveway, in front of all my friends. I was mortified and in unbearable amounts of pain. By Monday, I was at school in a wheelchair again with a stiff full leg brace. Both my mom and I knew I couldn’t live like this.

Sophomore year of high school, my mom and I traveled all around trying to find a doctor to diagnose my pain, to figure out why my knee kept slipping out. We went to clinics in Grand Rapids, drove to Shriner’s Hospital in Chicago, flew to New York for the day to see a specialist. We went back to my old doctor who had done my original tendon transfers, who looked me in the eye and told me my best option would be to amputate my feet as this point. I was sixteen. I cried, and I’m sure my mom did too.

Now a Junior, we were referred to a doctor at Providence Hospital in Michigan, Dr. Michael Mendelow.  We were exhausted from trying to figure out this painful mystery. My mom came with a big shopping bag of medical records, X-rays, doctor’s notes. He examined me and said to leave him with the overflowing bag. About three weeks later, he called us to come back in. After studying my X-rays, he found that the bones in my leg were turned in at an angle of about 25-30 degrees, a normal leg is less than 15. The angle of my leg, now fighting the position of my feet, were constantly fighting one another, causing my knees to dislocate. My legs and feet were working against one another.

He said I needed a tibial and femoral osteotomy- cutting the bones in my leg, repositioning them, and setting them with an external fixator so that they grew back at the proper angle. When I look back on it, I didn’t ask a ton of questions (My mom did, I probably just played Snake on my flip phone). I don’t even think I knew what an external fixator was. I just chalked it up to another surgery. We scheduled the surgery for my left leg (my more troubled leg) for right before Christmas.

I barely remember being in the hospital after the operation. The only thing I recall, is asking my mom to move the blanket so I could look at my leg. She hesitated. She pulled it back, and I could not comprehend what I was seeing. My left leg had a Sci-Fi looking device coming out of it. Not on top of it or covering it, but protruding out from my skin. I had eight metal rods going through my bones, sticking out through my skin, set with big black bars. It started at my ankle and went up to the top of my thigh. I also had a cast on my foot, as another surgery was done to correct the tendon by my big toe. I couldn’t move. They sent me home on Christmas morning — I had to be taken home by ambulance. When we got home, I couldn’t stand up, let alone go up the stairs. I slept on the couch in the living room, my mom frantically ordered a hospital bed for our living room, and Frank, my mom’s partner, set up a wheelchair ramp on the front porch. I was in an excruciating amount of pain, clouded by multiple medications. But I can’t imagine what my mom must have been feeling. To see your child in such agony, incapacitated and crying, she had to have been hurting, exhausted, and in pain herself. But still, I think I only heard her cry once, when my friend Sara came over and held her in an embrace in the kitchen.

Once the hospital bed came a few days later, our living room became my room. My mom removed the couch, and taped Jonas Brothers posters on the wall among get well soon cards from friends and classmates. I ate all my meals in that bed, and quickly embraced humility as my only way to use the bathroom was with a bed pan. A physical therapist came to the house every other day to get me to stand up. I couldn’t return to school, so a teacher came over to deliver all my assignments. My friend Brittany came over to tutor me in math. I cleaned my incisions every morning and night, wanting to throw up every time I looked down at those gaping holes in my leg, each filled with a metal pin. I lost too much weight, unable to keep most food down from the pain medications.  My sister would make me milkshakes made with ice cream, “Boost” and girl scout cookies. Just when I thought I had met my pain threshold, I got kidney stones from the lack of movement and was rushed back to the hospital. I got bed sores, had sponge baths and missed my friends. Come February, I was moving more. I could get up with the help of a walker and get to the bathroom. My mom would make me get up and try to dance while we watched “America’s Best Dance Crew.” Friends were coming to visit, my boyfriend came over for Sadie Hawkins and we ate take out in my living room. By March, I wanted to go back to school. I was assigned a school aid who would take me from class to class (Brenda, if you’re reading this, I love you). For the first few weeks, my mom would have to leave work to come help me use the bathroom (one of the only perks was being allowed to use the staff bathroom, which I was amazed had lots of lotions and cool stuff in there). A handicap accessible bus would take me to and from school every day, my mom or Frank unloading me back into bed when I got home. By the time summer came, I started walking again, and I was doing great in physical therapy. I bought big voluminous skirts to cover my pins, wheeled around the mall, went to a Jonas Brothers concert, and even went to student government camp (I don’t think my mom breathed the entire 5 days I was gone). While my external fixator was only supposed to stay in for a few months, my bones weren’t growing back together as quickly as they’d like, and four months turned into nine. This was our new normal, and we got really good at managing it. I went back to school for my Senior year and got my pins out in September, right in time for Homecoming. Getting the external fixator out was relatively painless. I used a cane for another 6 months and told my mom I couldn’t imagine getting the right leg done any time soon (more than 10 years later, I still haven’t).

Maybe you’ve noticed that sprinkled throughout this long story, I’ve mentioned people who have helped me. The handful or so that I’ve mentioned doesn’t even begin to scratch the surface of the kindness I have received throughout my life. Kids were rarely mean to me. There was the occasional inquisitive, rude remark, but nothing scarring. Classmates would offer to push me in the halls, and help me get my lunch. Sara would come over almost every day after school with a bag of junk food and catch me up on all the gossip. Brittany would come over to watch “Gossip Girl” and help me with math (I am still horrible at math- Brittany could only do so much). My friend Mike took me to Winter Ball, where he and my friend Gerald danced around my wheelchair (Gerald now dances in Lady Gaga videos) all night. When I went to ACT practice, two boys from my class carried me into the tutor’s home because she didn’t have a ramp. My mom and my cousins would rent a wheelchair van for the day so we could go to the movies. My sister’s boyfriend would come over to help wash my hair. Her friends would prank call me pretending to be Christina Aguilera or Britney Spears wishing me well. There are endless examples. What I’ve gone through was no doubt hard as hell. There were some days I didn’t know how I could keep going, but looking back, I rarely measure it in pain. I measure it in unassuming, pure kindness.

I haven’t had a surgery since 2007. I’ve been managing my disability for over 10 years. I’ve been battling severe arthritis and chronic pain in both feet that can be debilitating some days. I can’t walk long distances, and I usually can’t stand for longer than 15 minutes (which is why I use a wheelchair when we travel or go places that require a lot of walking). I can’t run, or do any activities that could risk my right kneecap popping out (which it did, four months before I got married). I’m often limping around and some days I physically cannot get out of bed without holding onto walls. My husband has become my best advocate, encouraging me to always speak up about my limits and my pain. Reflexology has helped me immensely.

I spent most of my youth trying to fight the different orthopedic limits that made me different. But as an adult, I’m accepting that those things, while painful, are a part of me. My disability isn’t an add-on or something that happened to me, it’s something that is me. I am proud of how far I’ve come, knowing how low I’ve been. I am proud of my family, who tirelessly supported me and never made me feel like burden. I’m proud to have friends who are always aware that when we go out I may need to sit down, or they’ll map out if a walk will be too long for me. I’m proud of my husband, who has pushed me in a wheelchair around the world and has held my feet while I cried. But what I am most proud of, is that I am finally accepting who I am. I am disabled, I am fighting, I am happy, I am okay, I’m just beginning.