Elizabeth

I was born in 1970 without my left forearm and hand. This came as a shock to my parents, but after a brief pity party, they realized how much worse it could have been and embraced me with open arms.  They seemed to intuitively know that the best way to parent me was to have the exact same expectations of me as they did my older sister. I am lucky that their parenting instincts were right on, because there were no Internet support groups then!

The doctors could find no other physical or mental abnormalities at all; except for the arm, I was perfectly healthy. My left arm stopped developing for reasons the doctors could not explain (and they really still can’t, although some will try). It was not amniotic banding syndrome, as there is no evidence of any bands, and also, I have little bitty nubbins that would have been my fingers, if they’d have kept growing. It’s also not genetic.

In other words, it was a random incident that “just happened.”  These things happen from time with no definite medical explanation. And anyway, does it really matter why?

(Now, in philosophical terms, I believe there is most definitely a reason why I was born this way, and that it was quite a deliberate divine decision, although once again – I may never know for sure what that reason is.)

Back in the day, it was assumed by all involved that I’d wear a prosthesis. I went to Elizabethtown Children’s Hospital and Rehabilitation Center, over an hour away from our rural home. I was fitted with a passive “mitt” at 11 months and received my first functional prosthesis (body-powered with a hook terminal device) at 20 months. Around age 6, my terminal device changed to a CAPP, which, oddly enough, I used well into my 20s. (It’s a pediatric device.)

I wore my prosthesis all the time, except for swimming and sleeping. I liked it, I used it, it became second nature. As a child it facilitated bike riding, piano playing, and shoe-tying, among other things. Unfortunately, it also became part of my body image. Going out in public without it was unthinkable. It would be like leaving the house undressed.  After I moved during high school, the number of people who ever saw me without “my arm” was limited to very close friends.

In my late 20s I joined I-CAN and through contact with the fabulous folks here gradually came to realize that I was in a tiny minority of upper extremity (UE) amputees who bother with prostheses, especially among congenital amputees. Being fitted as an infant worked for me, though, and I advanced that as a valid choice for parents. Bill Baughn challenged me on this: did it really work for me?  If I had anxiety dreams of going out in public not wearing my arm, and if I hadn’t been swimming in years? Hmm…That got me thinking.

Meanwhile, 10-ish years later, I became a mom. Man, I ditched that prosthesis so fast it would make your head spin. It was in the way, so it had to go. Amazing how quickly and completely the responsibility of caring for a baby can rearrange your priorities! I went out all the time without my arm and never gave it a second thought.  I had to remember to carry it with me in a bag to work. (I never stopped using it for typing.)

Well, another funny thing has happened. My son is almost four. I seldom carry him anymore, and our diapering days are over (well, for the most part). I am wearing my arm more and more. I like not having a floppy coat sleeve hanging there. I like keeping a “hand” on the wheel when I grab a sip of coffee. I like not having to find a bathroom to change in at work. I like the added warmth it provides (my little arm is always cold). It still gets in the way during some tasks, like housework, and it is uncomfortable to wear for very long periods.

So my current thinking is, the prosthesis is a useful tool for me. However, if it were my child, I would definitely not get them fitted as an infant. It robs the child of the chance to learn something first without it.  I was in my 30s before I learned to tie my shoes with one hand, and that’s just silly. If a particular task or activity causes problems, or the child asks for one, then I would look into it.

Around age five, my big sister was taking piano lessons, and I asked Mom if I could take them, too. I had no idea what a dilemma this was for her. She wouldn’t dream of telling me I couldn’t learn to play the piano, but how was that going to work? Through a series of contacts she hooked up with a man in a nearby community whose left arm was disabled by polio. He explained to our piano teacher how to instruct me. I would play one note from the bass clef with my left hand (prosthesis), pick up any remaining bass clef notes that I could reach with my right hand, and drop the rest out. It worked! I took piano lessons for about eight years.

Then in 5^th grade, I picked the trumpet as my band instrument. A natural choice for one-handers, plus my dad played it. I really took to the trumpet and played throughout high school and college in every ensemble I could find. Brass instruments (trumpet, French horn, trombone, baritone, tuba, etc.) are a fantastic choice for one-handed musicians because, besides the fact that they are cool, they need little to no adaptation. I have my right hand and did not have to adapt my instrument or the method of playing for the trumpet. Some instrument manufacturers are happy to make adaptations if you need them, however.

There were plenty of funny moments growing up.  I remember one time Mom was in the kitchen with her best friend and two business associates while I was upstairs getting ready for bed. I yelled goodnight to Mom and added, “My arm’s dirty!” – a commonly heard statement in our house, to which Mom made her normal reply, “Leave it out in the hallway and I’ll scrub it with Comet.” But she forgot that there were people in her kitchen who didn’t know me, and they were horrified at this!

Then there was the time my mother forgot I only had one hand. She was rummaging around the church pew looking for all of my winter gear – coat, hat, scarf, etc. I was all dressed and ready to go, but she was still turning the place upside-down. Finally she said, “I can’t find your other mitten!”

Finally, one I’m not so proud of, the time on the school bus that I conked a boy over the head. Yes, parents, the prosthesis can be a weapon.

About my family: My husband is a college professor at a private liberal arts school.  We met in college in 1989, graduated, got married, moved to Virginia, and started collecting animals (and advanced degrees).  We moved to Vermont in 2001. Our son Jae was born in Korea in 2004 and arrived home at six months old.  His little brother, Kisung, was born in Korea in 2008. He is our “I-CAN kid”:  amniotic banding syndrome affected 3 of his limbs and caused some other problems as well. He is doing spectacularly well, and I encourage anyone who is thinking about adopting to check out the waiting international children listed with Children’s Home Society of Minnesota.

Being an amputee is not a big deal to me. It has not had a significant impact on the things I have done in my life, but at the same time it has helped make me the person I am. And as I grow older, I realize that to many people, the idea of it being “no big deal” to be an amputee may be impossible to understand. That’s why I want to be available as a resource for anyone (especially families of children with amputations similar to mine) who may have questions or concerns.