Living with Arthrogryposis Multiplex Congenita (AMC):
5 Lessons Learned — A Sister’s Perspective
As I recover from hip replacement surgery, I find myself thinking about my younger brother, who was born with Arthrogryposis Multiplex Congenita (AMC). I was three years old when he was born, and life took a sharp turn. I don’t remember who told me and my sister the news of his birth, but I remember bits and pieces of information that came our way:
“He was born blue.”
“His body is deformed. They think he might also be ‘mentally retarded.’”
“They don’t know if he is going to live.”
“He is going to have to stay in the hospital for a while.”
I also remember clearly how my mother reacted.
“The doctors (and your Dad) think he should be put in an institutional ‘home.’ But I am bringing my baby home. I am NOT putting him in an institution.”
To appease the men, Mom struck a deal with the doctors and our Dad: “I am bringing my baby home, and if we find out I am wrong, we will revisit this conversation later.”
Prior to my recent surgery, I purchased a variety of assistive devices because I am not allowed to bend past 90 degrees for a while. The devices include a walker, a cane, a raised toilet seat, a grabber/reacher tool (to pick up items I may drop or to get dressed), a sock aid tool, slip-on shoes, and a grabber bar for the shower.
As I began to navigate my new world of temporary physical restrictions, I quickly realized that every device required me to be able to grasp — to close my fingers around something like a handle and use the muscular strength and flexor-extensor control of the joints in my upper body to operate the device. Even as I marveled at the simplicity of the devices, the first time I used the grabber tool, I was struck, “John would not be able to operate this contraption. Damn.”
Grasping is not a hand movement my brother can make; AMC affects one’s ability to flex and extend the joints. His AMC affects all his joints except his hips.
Mom always said she could tell by the way John responded to her that there was nothing wrong with his mental state or intellect. She was right. Once he came home from the hospital, he was there to stay.
As an infant, John had casts on his arms and legs. Baby pictures show he was a happy boy. We carried him from place to place and fed him. He soon learned to scoot up and down the stairs — and across a room — on his bottom. He kept up the best he could.
Growing up, we always had physical therapists coming to the house to “work with” John. When the physical therapist wasn’t there, we were on deck to help in whatever ways we could. It was a team effort.
As John got older, the physical therapist brought a variety of “contraptions” for him to try. One device was intended for eating with a fork or spoon.
It was 8 to 12 inches tall and sat on the table. It required John to push a lever to operate the attached utensil. John was supposed to scoop food off a plate and bring the utensil to his mouth rather than resting the fork or spoon between his thumb and pointer fingers, bending his face down to the plate and pushing the food into his mouth. Since John could bend his elbow 45 degrees, his approach worked just fine. But the new device was a source of frustration and didn’t operate as intended. The contraption was gone the same day it arrived.
John learned to walk with the help of full-length leg braces when he was 4 years old. The braces reduced his need to boot-scoot as much. However, he still needed assistance putting the braces on and taking them off. They often caused blisters on the back of his thighs. That is, until mom realized that leggings over his thighs and beneath the braces offered protection. For a long time, he still could not walk up and down the stairs. That milestone was another hurdle that took years to master.
We all loudly cheered this progress and joked about how the leg braces made John bionic.
My first few days at home post hip replacement surgery were rough.
Though I had watched videos to prepare for how to get in and out of bed, I spent long stretches sitting on the edge of the bed wondering how to proceed. The surgical leg was dead weight. Lifting it wasn’t going to be easy. For what seemed an eternity I sat staring at my legs.
How in the world am I going to get them on the bed so I can lay down and get some much-needed sleep?
Everything John does just to function in the day-to-day world must be exhausting.
I think I can. I think I can. I think I can.
I figured out I needed to use my arms to lift myself up and scoot my butt into the middle of the bed, and then swivel my legs. My arm muscles grew tired and sore quickly. By the time I finally got my whole body into a prone position, I was exhausted.
The sock aid and grabber tools quickly became my friends; they enabled me to be as independent as possible with my activities of daily living (ADLs). I have flexor-extensor control and can grasp with my hand, as well as pull and lift with my arms.
How in the world does John navigate his activities of daily living these days? What assistive devices are available now that weren’t available 50+ years ago? There must be some innovations.
I started a Google search for assistive devices for people with AMC. Not much turned up. Even the AMC Support Group website advertises aids that my brother wouldn’t be able to use independently or without the help of a caregiver because of how AMC affects his hands. A few homegrown ideas can be found on Pinterest.
John first attended school in Washington DC when he was 5 years old. The school was part of an Easter Seals program and referred to as the DC Society for Crippled Children. The school was a melting pot of children with incredibly diverse needs. But it became apparent early on that this “school” was not a place where John was going to get the academic education he needed (and deserved). Our parents moved him to a private school.
The move was not without its stresses. John was still learning how to manage to be in a world of stairs and schedules and able-bodied children who had never known anyone with John’s physical limitations. Our parents hired someone to carry his books and assist his efforts to get up and down the building’s stairs.
When we were out and about doing family things, people stared. A lot.
“Take a picture; it’ll last longer,” my sister and I would retort.
Mom’s mission was to make sure John was as independent as possible by the time he turned 18.
When John was learning to walk up and down stairs, a milestone years in the making, we would “spot” him. And, he would fall often.
He would then cry and beg, “Please help me up.”
“No, John. You have to try to do it yourself. Get up and try again,” we would respond.
As a family, tough love was our strategy. We often spewed harsh words during these tense times. Inevitably, John would get himself up — somehow, someway — dust himself off and try again.
I think of our family unit as John’s starter team, his first fan club. Over time, that team grew to include babysitters, teachers, neighbors, an ever-growing number of friends, colleagues, a wife, and two children.
In his lifetime, John’s abilities surpassed everyone’s expectations, except perhaps his own. He has been a soccer coach, a teacher, a school administrator, dad, husband, friend, and colleague. He drives a car, and much, much more.
Even now, it is common for people to say to me when we meet, “Oh, you’re John Sharon’s sister.”
So, what did I learn growing up with a brother who has AMC?
1. Real love + disability spark empathy and compassion.
From the moment I met John, I loved him and felt a profound connection, assuming the role of protective older sister even though I was just a child myself. Of all the lessons I’ve learned, I unequivocally attribute my deep empathy and compassion toward others to our relationship. Nothing is more important to me than showing up for and offering support to people who need help.
2. There is a solution to every problem.
John’s significant physical limitations could have prompted all of us to give up. But, we were fighters. We greeted every obstacle with one attitude: “We’ll figure it out.” No matter how tough a problem seems in the moment, I know — somehow — I (or we) will find a solution. Sometimes, taking a break and coming back to an issue with a fresh perspective is the way to solve it.
And, if at first you don’t succeed, try and try again. “The Little Engine That Could” isn’t just a children’s story; it’s a roadmap for life. No matter how frustrating a task may be at first, having the mindset “I think I can” ALWAYS results in finding an optimal outcome. It may take several tries and a ton of time, but one must never, never, NEVER give up.
3. Being a sister of someone with significant physical limitations is lonely.
Growing up, I never knew anyone else with AMC. It wasn’t until I was much older that I realized how lonely it felt. We didn’t have support groups. We didn’t see a therapist. We just did the best we could. And that was difficult.
4. Human beings with physical limitations are not “disabled.”
My brother is one of the smartest, funniest, talented humans on this earth, and I am privileged to be his sister. I am grateful for all he has taught me over our lifetimes — and for the laughs and tears and all the shenanigans in between. AMC is not who he is; rather, it is a condition with which he was born. It might limit him physically, but it does not stop him.
In fact, my brother likes to say that disability is actually an integral part of what it means to be human. Everyone is touched by disability sooner or later, either because of an accident, injury, or aging. We cannot ignore that all human beings have limitations. As I have recently learned, it’s just a matter of when we will confront this truth.
5. The world needs a much broader range of assistive devices!
Our mom helped John put on his own socks by sewing two cloth loops on opposing sides of the top of his socks. This simple modification enabled John–for decades — to put his pointer fingers through each loop and pull up his socks by himself. This one simple adaptation has made his life a little easier every day.
I wonder how many adaptations others have invented but not shared outside their family system. Because I know there really is a solution to every problem, I’m thinking it’s time we all do a better job of sharing resources. Many lives would be made so much easier by doing just that.