First, happy Arthrogryposis Awareness Day!
When I asked for your questions last week, I had no idea what you might send in, but I was excited to find out. This was a blog experiment I was willing to try. And I wanted to give you guys the space to share any thoughts. So thank you for submitting questions and thank you for joining the conversation. This is just the beginning. Because I can’t tell you everything in a single post.
You asked and I hope to offer you a peek into my (un)limited life with Arthrogryposis. I say unlimited because there is a beautiful kind of freedom within limitations.
For now, here are my answers. Part One. We will explore more next Tuesday as I answer the rest of your questions.
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What does that word even mean?
According to Wikipedia (and feel free to read more of the scientific descriptions here), “Arthrogryposis multiplex congenita (AMC), or simply arthrogryposis, describes congenital joint contractures in two or more areas of the body…Children born with one or more joint contractures have abnormal fibrosis of the muscle tissue causing muscle shortening, and therefore are unable to do passive extension and flexion in the affected joint or joints.”
Yea, what does that mean? The best and simplest way I like to describe Arthrogryposis is: I have a lack of muscle mass. Some of you have probably heard me say I looked like a pretzel when I was born. I was a little ball of tight muscles and joints stuck in place, with fingers, toes, arms, and legs pulled inward. My head was even resting to one side. With lots of physical therapy, the muscles relaxed, stretched, and strengthened. This kind of “treatment” is a big commitment in the early years, but it helped me a lot. I am more mobile and independent because my parents helped do the therapy 5 times a day for the first 2 years of my life.
In what part of your body are you most affected by arthrogryposis?
I have what is called the classic case. This means my arms and legs are affected. Some people are affected just in their legs or just in their arms or just one side of their body. There are many variations. I can’t really say one area is more affected because my muscles are underdeveloped and weaker from my head to my toes. I have a pretty severe scoliosis curve in my spine, which is why I had back surgery at an early age. You might also be surprised to know both of my hips are dislocated, but they have been since birth and this fact makes walking easier for me.
At what age did you realize you were different from other little kids?
I’ve actually never seen myself as “different”. Of course, I know there are things I can’t do. That will always be true…unless Jesus decides to miraculously heal my body on this earth or until He returns to make everyone and everything new.
Growing up with 2 older brothers and attending public school, I learned quickly how to find peace in participating in my own way. Here’s one example: I couldn’t play a sport, but I loved watching my brothers and friends play in many games. I was limited to the sidelines and I was okay with that. There was plenty of joy in that spot, cheering on those I love.
Because the bottom line is — I am normal to those around me and to myself.
When you were little, could you bend your arms at the elbows? If so, when did it begin to be difficult?
Yes, they used to bend a little easier, enough that my dad put my finger in my mouth one time and I slightly hurt myself by biting down. Oops, but it is a fun memory!
My arms (and legs) were more flexible in elementary school. Part of it was the constant physical therapy I received at home and at school. The other part was my smaller and shorter body size. When I was little my muscles moved more freely. I lost some of the range of motion as I grew taller. My muscles couldn’t keep up and the therapy could only do so much. By high school, my arms were long and straight. I had been feeding myself lunch at school with the help of arm slings and a spoon that would swing towards my mouth as I pushed the handle away from me. That ended when I was too tall to bend down to the spoon.
Do you experience much pain related to arthrogryposis on a regular basis? What does it feel like?
I don’t have pain very often. When I do, there are usually specific reasons for it.
If I sit in my wheelchair too long, my feet, hips, and occasionally back, will ache. The weight of my body is on my feet and this is what keeps me sitting upright more than anything. My hips and back get tired and stiff from being still for hours. Most of the time changing my position helps, but sometimes I have to lay down to give all my muscles a break.
If I stand up too long, my knees will ache or simply be exhausted from the effort. This can make my legs feel weaker as I walk until I rest my body again.
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Ok, friends. Part Two will be next Tuesday. Join me again then and in future weeks as I share more thoughts and stories!