invisible, pt. one

Recently I’ve been noticing that I’ve been turning my right foot to the side when I stand up.  I’ve done this sporadically since my experience in fourth grade with Reflex Sympathetic Dystrophy, now sometimes called Complex Regional Pain Syndrome.  I think about the nerves and muscles in my foot that STILL, after 22 years, are not trained to consistently work properly without conscious effort.  I thought this would somehow translate into a great lesson for the youth group and how our thoughts and behaviors take conscious efforts, etc., so I asked my mom to share what she remembers from that time so that I could have a better record of it (I mean, I was only 10 at the time).  When I opened up this email from my mom and read it, I was blown away by her telling of the story.  Perhaps you’ll be at least a little interested in it, too.  It takes on a whole new level of meaning for me now as a parent.  Here’s part one (my memories are in red):

One late afternoon in January, the year you were in fourth grade, while I was fixing dinner, you came downstairs from your bedroom to tell me of pain in your foot. I looked at it carefully, remembering the summer evening Peter broke his foot on the old deck steps. (She didn’t think he’d seriously hurt himself but he’d broken some bones – after that she took all complaints a bit more seriously!)  No injury was visible on your foot, no cuts, no bruises, no marks of any kind. You didn’t remember getting injured on the school playground; you hadn’t twisted your foot or stubbed a toe. I don’t remember any treatment that day. I may have given you some ice in a baggie to hold on your foot.

I don’t remember the exact timetable but at some point, after some days or a week as you limped around, I took you to Dr. M, our pediatrician. He looked at your foot, touched it, tried to identify the cause and I believe sent us to have your foot x-rayed. The x-ray showed no broken bones or any obvious cause of the pain. Days pass with no improvement. I remember filling a small plastic tub with warm water so you could soak it. I was thinking you might have in infection beginning under a toenail. You put your foot into the warm water and screamed in pain. (This I remember.  Everyone was at a loss of how to react.)  It was so hard to understand because WE COULDN’T SEE ANYTHING. You put your good foot in the water with no problem. Your injured foot felt much warmer than the other foot. It was hard to see but your injured foot seemed a bit swollen.

Next step was to see the orthopedist who x-rayed and examined your foot but nothing for him to see. He checked your whole leg and recommended that I take you to a vascular surgeon. The orthopedist said it was possible that a tumor could be in your leg causing the pain in your foot. This was one of the most awful times in my life, thinking that my beautiful daughter could have a cancer in her leg. (I’m glad no one ever told me that a tumor was suspected.  As a mother I can’t imagine anything scarier!)  And, in the dark of night, mother’s minds become increasingly dramatic – the words amputation, death crept into my thoughts between the prayers for healing. So, off we went to the vascular surgeon. He performed a Doppler test, something similar and a forerunner of the ultrasound, and, again, nothing to explain the pain. He then wanted you to have a nuclear scan at the hospital lab.

Some days later, I took you to the hospital where you were injected with some radioactive material. The radiology technicians did some scanning, then sent us on our way for a couple of hours. The injected material needed to circulate in your body for a while. So we went out to breakfast!! This was a nice treat on a school day morning! After the second scans, I returned you to 4th grade and me to work.  (What was cool about that was seeing every bone in my body as it was put in front of the scanner, including my skull.)

And, once again, tests showed nothing, yet the pain continued. I knew it was something real and I know you suffered while many dismissed the pain as “in your head” or 4th grade female drama or merely looking for attention. (There were many who did not understand the reality of this. Even my teacher wasn’t very helpful in coming to my defense against the cruelty of my classmates.)  Meanwhile you avoided some pain by walking on the side of your foot. Finally, Dr. M connected us to Newington Children’s Hospital. It was weeks before we could get an appointment. I think it was late March or early April by the time we learned to drive to Newington and find our way around that hospital. Remember the large waiting area filled with stuffed animals, including some human sized. Also, I remember following a colored line on the floor – different colors to help patients find the right area for them. (AH!  The colored lines!  I remember that.)  It seemed so simple and so smart but we’d never seen it before Newington.

…to be continued…