‘Doctors told my parents I’d never walk.’: Woman with Arthrogryposis Multiplex Congenita walks across stage at graduation, talks defying expectations

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“Doctors had told my parents I would never walk, but I learned to walk at the age of 5. They also said I would never be able to feed myself, brush my teeth, dress myself, or live on my own. I do all of these things and then some today.

I remember that day well. I was sitting in the living room; my mother was in the kitchen making lunch. Up to that point I mostly got around walking on my knees or rolling from one spot to another. This day was different. I don’t know what possessed me to do it, but there was a small voice in the back of my head that told me to make my way to the arm of the couch. Once there, I reached up and pulled myself into a standing position. The first thing I remember was the excitement of seeing the world from a different height. I didn’t know what to do so I stood there holding onto the arm for a while trying to figure out my balance. Then, I gathered the courage to take a few steps towards the kitchen to show my mom what was happening.

mom holding her baby
Courtesy of Leah Paul

‘Mom, look!’ I said, my mother looked up from chopping the veggies at the counter. It wasn’t until I was an adult that I understood her reaction. She turned white as a ghost and screamed. I realize now that it would be a shock to see your handicapped child, who was told would never stand, standing in front of you. I just remember a lot of oh my god’s and tears. I always refer to this moment in life as my God moment. It’s an inexplicable thing that was never meant to happen happening. It was a miracle, as I’ve been told by many people, strangers, and friends. Apparently, my family had been praying for this moment from the time I was born.

Let me take you back to 1986. When technology was just at the start of a boom, back before 3D ultrasounds, back before disabilities were detected only after birth. That was the case with me. I was born with a rare birth defect called Arthrogryposis Multiplex Congenita, or AMC for short. It is a present-from-birth disability resulting in joint contractures and improper muscle development. Arthrogryposis is a Greek word. It is broken down as arthro (joint) and gryposis (curving). Joint contractures must be in at least three joints. AMC is found in 1 out of every 3,000 live births. One of the most common signs present at birth are clubbed feet, but not always. The most common type of arthrogryposis is called amyoplasia, in which the hands, wrists, elbows, shoulders, hips, feet and knees are affected. It occurs in 43% of all AMC cases. I am affected in all these areas. Because it is so rare, there are no specialists. The types of doctors we most frequently see are orthopedics and physical rehabilitation. Even then I’ve always found I have to explain to them what AMC is.

girl with a Tiger
Courtesy of Leah Paul

AMC is a physical disability. It usually does not affect the mind or intelligence of the person who has it. AMC is considered non-progressive. However, early arthritis is common. I was first diagnosed with arthritis in my hips at 20, and more recently in my knees.

Doctors are unsure of the cause. One suspected cause is ‘fetal akinesia,’ which is decreased fetal movement in utero. For me, I was always told I didn’t have enough room to move in my mom. There is no cure for AMC. Surgery and casting (forcing the joints into place with a cast) are the most common corrective measures taken. Continuous physical therapy is the best way of maintaining and building muscle strength.

Muscle weakness is a result of the muscle being shortened during development. Therefore, proper extension and flexion is unable to happen in the affected joint. I was born with clubbed feet. I had my first surgery at the age of 10 months old. My second surgery at 3 years old. Both of my feet were cut up the back of the Achilles and around the ankles. They cut my tendons to release my feet into a more natural position. However, this only worked up to a certain point. After the last surgery, I started wearing ankle foot orthotics, or (AFO’s). Most people know them better as leg braces. I’ve had braces since I was about 3 years old. They help keep my foot flat, and offer support to my ankles. I would 100% run back into a fire for these babies, not just because of their value, but because it would take weeks, maybe months before I could get new ones. These are the things that make it possible for me to stand, walk, just function for daily living. Thinking about not having them makes my legs hurt. While there are some days I choose not to wear them, for the most part they are on every day from when I wake up until bedtime (12-16 hrs).

leg braces
Courtesy of Leah Paul

Fun fact: my calves have ripples from growing with these on over the years. As I got older and more mobile they’ve been shortened a lot.

Fun fact #2: I once had to call the po-po cause a friend was having a mental medical emergency. This happened late on a Saturday evening, and I did not have these on. The po-po pulled me out of my apartment and for 45 mins I was forced to stand by the elevators while they dealt with my friend. Eventually, one of them noticed the empty wheelchair and came out to ask if I needed it.

Many people with AMC are considered semi-ambulatory. My hips are naturally dislocated, meaning when I was born my hips were not in the proper socket. They are actually three inches above my natural socket, and over the years the bones have carved their own sockets. They are slightly externally rotated, leaving my feet to rest in a V position. Due to their dislocation, I walk with a sway. I call it a penguin walk. I get stared at a lot when I’m out in public because many people can’t figure out why I walk the way I do. So even though I can walk, it’s only for a short time and distance. Muscle stiffness can occur rapidly. Stretching as often as we can is a recommended solution.

I made my walking debut as the flower girl in my aunt’s wedding. No one outside of immediate family knew. I still can hear all the gasps from people as the doors opened, my mother stood there holding my hand as we walked down the aisle. The funny thing is that they didn’t see me fall right before the doors were going to open, and my aunt did everything she could to get me to stop crying. Those early years of learning to walk were hard, and I spent a lot of time on the ground.

But back to my childhood. Throughout my life, my grandmother was my biggest supporter. I lived with her for a good portion of my early years. Not only was I born with a disability (faced with a whole host of physical challenges for life), I was born into a family surrounded by tragedy and death. Two years before my birth, my uncle was shot and killed on my grandfather’s birthday. Two years after I was born, my grandfather died of a heart attack. My mother had mental health issues her whole life, but in the 60’s you didn’t take your child to a psychologist. These issues became prominent after my uncle’s death, and she turned to drugs and alcohol as a way to cope. Surprisingly, she was able to maintain her sobriety during her pregnancy with me, and again a year later with my sister. By the time I was 5, another uncle (my dad’s brother) had passed from AIDS. I didn’t know what it was back then, of course. He and my mother were getting divorced after years of physical violence towards each other. Much of which my sister and I witnessed. We definitely still have trauma from it to this day. We lived with my grandmother for three years before she died from a brain tumor. Every morning she would greet us in the kitchen, pulling us into her lap with a hug and asking, ‘Have I told you good morning?’ ‘Have I told you how beautiful I think you are?’ ‘Have I told you how much I love you?’

After she died, my mother slipped further into her mental issues. My aunt and her husband decided they would take custody of my sister and I, while my mother got the help she desperately needed. My mother had other ideas. She kidnapped me when I was 7 years old. We spent most of that day riding around in her van. She wanted to get my sister too, and went back to the house to get her after school let out. She was so in her delusion that she didn’t realize going back to the house for my sister would give my uncle an opportunity to save me. He ran out of the house, grabbed me from the front seat, and took off down the street. I stayed with a neighbor while the cops straightened everything out.

young girl with her grandma
Courtesy of Leah Paul

Years of court battles raged. Usually neither parent showed up, even though they were the ones to insist on the court dates. All that changed on February 23, 2002. I was a sophomore in high school. My aunt and uncle had legal guardianship for over seven years. We had come home from school, but my uncle was there, highly unusual since he was supposed to be at work. The vibe in the house was tense. Almost immediately we knew someone had died, but didn’t know who. He and my aunt stayed in their bedroom for most of the evening. While we were doing the dinner dishes my uncle said, ‘I need you girls to come upstairs for a minute. We need to talk.’ My sister and I just looked at each other. It wasn’t until their daughter started to follow us and he said, ‘No, just Annie and Leah’ that we knew it must be really bad.

My aunt was lying on her bed facing away from us, but I could see in her mirror she was crying. My uncle shut the door, and sat on the bed. That is when we were told, ‘I’m sorry, but your mom…’ I didn’t need to hear the rest, we knew. It turns out my aunt and uncle had spent all day trying to confirm her death. She had apparently once faked her death in an attempt to get my sister and I back. They found out she had spent the last week in the hospital. She was bleeding internally from her esophagus and liver, and there was nothing the doctors could do to stop it. I’m told it is an excruciating way to die. They asked us if we wanted to go to Texas for the funeral. A decision I let my sister make. We did not go, which in hindsight, I’m still okay with. I didn’t want people staring at us, asking us questions that we most likely didn’t have the answers to.

woman smiling
Courtesy of Leah Paul

I graduated high school two years later. Walking across that stage and my classmates giving me a standing ovation is still one of the most surreal moments of my life. It shouldn’t have been possible, and yet there I was. That fall I moved away from home to college. I flourished here. I spent the next four years studying psychology in Dayton, Ohio. Part of me needed to understand my mom, and psychology helped me realize a lot of my upbringing was not my fault. For much of my life I struggled with my identity; am I a blessing or a curse?

It’s hard when you’re born in the middle of turmoil, and you yourself are turmoil. My aunt and uncle cried for three days straight when they found out I was born the way I was. There was never any indication I would be anything but ‘normal.’ However, they did a great job raising me. The summer after college graduation I moved to Washington D.C. where I spent three months interning for the Center for Clean Air Policy. Then I moved to Portland, Oregon to do two years in the masters of publishing program.

group of friends at a party
Courtesy of Leah Paul

Over the years I learned how to do many of the thing’s doctors said I’d never be able to do: I walk, dress myself, brush my own teeth, can cook and clean, can shower myself. I have two cats I can successfully manage and keep clean. But it hasn’t always been easy or painless. I’m forever grateful to the friends who became family along the way. They were there for me when I needed help grocery shopping, doing laundry, or if I just needed someone to call to come pick me up because I fell. Because of them I was able to successfully living as independently as possible for over 10 years. Only as I’ve gotten older, and maybe a little less prideful, I’ve realized a caregiver allows me to maintain independence. I’m lucky enough to have someone (paid for by the state) that comes into my home four days a week. She helps with all the household stuff, errands, and other daily living activities. Without her, I probably would’ve been living back with the parents long ago.

Disabled life can be frustrating. There are many things internally and externally that hold our community back from experiencing all this world has to offer. But I wouldn’t change it for anything. It has made me the person I am, on top of all the other things life has thrown my way. It has made me strong, resilient, adaptable. I realized my lot early in life. I am a walking billboard for disabilities. As long as I’m around, I’ll never stop fighting for our rights to exist, and I’ll never stop educating.”

woman smiling
Courtesy of Leah Paul

This story was submitted to Love What Matters by Leah Paul from Portland, Oregon. You can follow her journey on Instagram, Twitter, and her blog. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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