Today, my friend sent me a painting through a text message and said, “Have you seen this before?” Indeed, I had seen it once many years ago but I was never able to find it again. I want all of you to look at it because it’s a shocking miracle that this man was even born. It was painted in the 16th century and it’s Austrian, which is why I was never able to find it. I was looking through English searches. The painting has been housed in the art collection of Ambras Castle near Innsbruck since 1977 (my German isn’t so good anymore but I think that’s what it said). It’s listed in the catalogued under the entry “Portrait of a Cripple”. Nothing is known about the man that I could decipher. They didn’t even know what his disability was until another woman with Arthrogryposis recognized the signs.
Take a good long look at the painting and then I’ll write more below.
I know, it’s a little uncomfortable to look at if you’re not used to untreated Arthrogryposis deformities. I have a hard time looking at it myself because it’s a glaring reminder of what I used to be. I’m stunned that this man even survived childbirth. My birth in 1982 was very difficult because, as you can see, the body was extremely deformed. I was not only breach but I was coming out knees first if I was going to be born the traditional way. They performed a C-section instead.
This man’s body is a replica of how my body looked when I was a baby. I have endured nearly 20 surgeries in 30 years to have my body’s deformities corrected as much as possible. In the 16th century, this man never had those opportunities. The fact that he survived into adulthood is absolutely shocking to me. The deformities can often be life-threatening in Arthrogryposis if the case is as severe as his back then and mine today. Spine curvatures can cause the ribcage to grow into the organs, for example. Doctors told my family that I would die before reaching adulthood if they didn’t do a full spinal fusion in 1989, which is why I’m so small. When a spinal fusion is done, it prevents the body from growing much more, so they generally prefer to wait until after puberty. My surgery was done before puberty and that meant spending my life as a petite little flower, as my uncle says. Ribs can be deformed and compress lungs – another manner of dying young. Heart disease and neurological problems seem to develop at higher rates with Arthrogryposis as well. And then I think of the chronic pain in my life. I have had osteoarthritis since I was 6. Tight ligaments and tendons also cause chronic pain. Fighting muscular atrophy is painful as well. I take narcotic painkillers on a regular basis. What did this man do in the 16th century for his chronic pain?
I can’t wrap my mind around living with Arthrogryposis in the 16th century. I wish I could have known this man. Let it be a lesson to all of you that surviving anything is possible.