By Melissa Bean
Every 5 to 7 years of my life, I have a chance encounter with a limb different person, and it changes my life. That’s not an exaggeration. I rarely see people with amputations, and when I do see them, we usually don’t interact. On the rare occasion we talk and share our stories, I always learn something important about myself and my life as a congenital amputee.
The first chance encounter happened before I was even born. My mother was a high school student in Southern California taking a home economics class. Her teacher Mrs. Joyce Birdwell had an upper limb difference exactly like mine, left arm below the elbow. Mrs. Birdwell taught my mom to sew, chop vegetables, make cakes, clean a kitchen and do all the things necessary to manage a home and family as understood in 1963. Mrs. Birdwell made her own clothes, wore her hair up, drove a car (back when most cars still had a manual transmission and no power steering), and generally lived her life without reference to her limb difference.
About 10 years later, I was born. In 1972, the world was still reeling from the thalidomide epidemic. My mom’s old-school Caesarean section left her semiconscious for days after, and the rest of my family had to take in my limb difference without her. I was wrapped tightly and kept in a separate room away from the other babies. It was my aunt who shouted down the nurses, insisting they allow her to see me. She held me, opened the blankets, and when she saw my arm, her very words were, “Is that all?”
My parents had a similar reaction – though I understand there were difficult times and a sense of loss. My mom knew I would be fine because she had seen her teacher live a typical life: marry, have children, hold a job, drive a car, care for her own home and do it all without apology, excuse or embarrassment. Mrs. Birdwell changed my life because she showed my mother my limb difference did not have to limit me or define me.
At the Gym
Another chance meeting with a limb different person was actually meeting a limb different person’s older sister. In 1993, I was a junior in college studying hard, working hard and playing hard. I did step aerobics at 5 AM, took ballet classes just for fun, and played in intramural sports year-round. I had a part-time job and a full course load, and I loved all of it. One day, a young woman in my step aerobics class approached me and said, “How do you do all of this?”
I didn’t know how to answer her, but then she added context to her question. “My younger brother has an arm like yours, and he can’t do the things you do. He isn’t going to go to college. He only wears pants with elastic waist bands, and we tie his shoes for him.”
I still didn’t know how to reply, because I was stunned by her words.
“What did you do to him?” I asked unthinkingly and insensitively.
It was not my finest moment. What I say now to anyone who tells me they are impressed with or surprised by my abilities is, “My parents didn’t do things for me. They let me figure it out for myself. I also had three siblings who didn’t take responsibility for me and my needs. That made me an independent person.”
Meeting this young woman showed me many factors influence outcomes for limb different people. Parenting styles, siblings and birth order, personality, and community all affect how limb different people and amputees measure their opportunities and capabilities.
I felt sad for this young woman and even worse for her brother who had been so badly affected by his family’s overprotectiveness. I felt grateful for my siblings who didn’t give me a break and my parents who expected me to learn how to do things my own way. It wasn’t easy, but I have led an independent life and never had a doubt I could do the things I wanted to do.
At Summer Camp
I met a young woman during college – also named Melissa – with a congenital amputation like mine. Our university held weekly summer camps for thousands of kids in sports, dance, technology, and so on, and we were both camp counselors. In the sweaty chaos of herding kids and teens from classes to meals to mixers, we didn’t cross paths for several weeks, but people kept telling us about each other. When we finally met, we screamed and hugged like best friends.
We two Melissas had a long conversation about a hundred things, but especially the way we introduced ourselves to our young campers. They always had questions. They always wondered. She said she didn’t mind the questions and told everyone about her arm before anyone even asked. She talked about her limb difference easily and enthusiastically.
I was quieter about my arm. I didn’t resent questions, but I didn’t invite them either. I wanted to be known for myself and not for my limb difference. I appreciated her approach, but knew it was not the right one for me. She showed me all amputees are different in the way they interact with the curiosity of those around them. She felt relief and empowerment in her wide-open approach. I find self-respect and comfort in my reserve. It’s all OK.
On Social Media
In 2021, I became acquainted with Laura Faye Clubok through Instagram. She is a registered and licensed occupational therapist who also has a congenital hand difference. Her practice and online presence are called On the Other Hand Therapy.
Laura and I don’t have the same limb difference, but we are the same age and both mothers of young adults. Her experience as an occupational therapist, which she generously shared with me, helped me see that my chronic pain was caused by overuse injuries from a lifetime of compensation. It has been hard for me to acknowledge I have a disability, and just as hard to acknowledge how my disability has affected me. My denial caused me to disconnect from my body, ignore my pain and push through injuries that needed treatment and rest.
Laura helped me understand that overworking my right side had caused my body to develop asymmetrically, and I needed to change my patterns, behavior and attitudes if I wanted to preserve my health. Her input gave me the idea that it was acceptable to express my limitations and needs. She gave me permission to let go of my childhood motto: “I can do anything you can do and I can do it better.”
At Joe’s Diner
One of my most memorable encounters with another of limb different person was the mother of a two-year-old girl with a congenital amputation like mine. I was out to breakfast with my family back when my daughters were still in elementary school – at a wonderful place with picnic tables, a slanting floor and a terrible parking lot. I was sitting in front of a giant plate of eggs, potatoes and sausages smothered with enchilada sauce called the “John Wayne,” when I noticed one of the waitresses looking at me and then quickly looking away. A few minutes later a different waitress approached our table and explained. “My co-worker has a daughter with an arm like yours, and she would really like to talk to you. Would that be OK?”
I was more than happy to talk – but mostly I listened. She was afraid her then daughter wouldn’t be able to have a normal life. Would she date or get married? Could she be a mother? Could she work or play sports or have hobbies? When she saw me there with my own children she felt an enormous sense of relief. She was worried about her daughter’s future every moment, but now she knew she didn’t have to worry anymore. We both cried.
I realized that seeing another amputee living a typical life is crucial – those of us with limb differences often don’t know what is possible until someone shows us. I thought of my mother and her home economics teacher, and I hoped I was giving this woman the same reassurance my mom had when I was born.
At a New Job
Recently, I started a new job organized on an on-call basis. Each day I go to work is different, but on my first day I felt especially excited, nervous, and well aware that my limb difference would play a part in my introduction to this position. I met the secretary who would give me my job description for the day, and she exclaimed, “Oh, my gosh, you’re making me so happy! My daughter has the same arm as you.”
We only had a few minutes, but I returned her excitement, and we exchanged contact information. I so was nervous that day. Running into someone who probably completely understood my nerves and who was happy to see me in this position was enormously encouraging. I needed that. I needed to not feel like an alien for a few minutes in order to regain my self-assurance. I know my uncertainty in new situations is valid – but so is my confidence.
Having a limb difference or amputation is a lifelong learning process – physically, mentally and emotionally. Of course, I’ve had painful lessons in great number – in situations when I knew I would be treated unfairly, rejected or misunderstood. But it is the interactions that have helped me see myself, accept myself, and feel the strength that comes with my unique experience that have made my life meaningful. I take those lessons into my heart and my head and their kindness, support and truth become part of my identity.
