Day 403: Silver Lining of the Week Volume One

I have an appointment with my orthopedic surgeon tomorrow.That sentence has always felt strange.It seems like I was born knowing what an orthopedic surgeon is it feels that way even though I’m pretty sure I didn’t know what that phrase meant until I was four. I just realized that many adults my age assuming that they are in good health and have never broken any bones don’t know what an orthopedic surgeon does. I also grew up knowing what kind of doctor a neurologist is from about the same age. By the time I was eight I remember asking the doctor to explain the surgery he was going to perform on me in language I could understand in as much detail as he could because if he was going to cut me open I was determined to understand everything. He was blown away. To this day, if I’m going to have a procedure which I’m unfamiliar with I poke and prod into every detail short of looking things up in a medical textbook.

Growing up disabled is one big contradiction, or maybe it’s a lot of little ones strung together. The first one that I really noticed is my physical therapist would often tell me during the session not to be surprised or too upset if as I got older it was harder to do things that I could do now. When they said older I thought they meant when I was in my 40s or 50s and it didn’t faze me that much because I knew things started to change for everybody around that time. What my therapist actually meant but didn’t know how to tell me was that things would change significantly around the age of 20 and I would start noticing differences in my late teens.

Being a professional who works with disabled children is probably one of the most conflicting jobs there has ever been. On the one hand, you do not want to give them unrealistic expectations of what the body can achieve on the other hand you don’t want to squash the motivation to learn to do things that may be hard for them. I was never mad at my childhood therapists for being evasive because as an adult I probably would have done the same thing in their positions.

When I was a little girl I pointed my toes all the time, I didn’t have a choice. My pediatric orthopedic surgeon at the time was focused on giving me a “normal” appearance and so pushed to have the toe pointing corrected, which we did because we didn’t know any better. He made my feet completely flat with no arch. I can’t point my toes at all, which makes getting boots on a pain. I am sad because boots are my favorite kind of shoes. It wasn’t until several years after the surgery when we started running into families of children with CP who pointed their toes but waited until eight or nine years old to have the surgery I had when I was four that we realized something that still makes my mom and I blisteringly angry. Those children who had the surgery later could walk functionally something which I have never been able to do. At this point, I think I should explain what I mean by functionally walking. Functional walking is the ability to cross a distance equivalent to that of two rooms (or possibly from one end of a larger room to the other) either completely by yourself or with the use of an aid such as a cane, crutches, or a walker. I can only manage a handful of steps if someone is walking behind me holding on to me the way you do a baby who is just learning to walk.

Several years ago I broke my legs and during one of my appointments with the orthopedic surgeon who put me back together I explained about the surgery that I had when I was little and asked if he thought he might be able to give me back at least some ability to point my toes. He said it was worth trying and after my legs healed we could definitely revisit it. My mom and I have asked many surgeons that question over the last 20 years or so and he is the first one to say that it is possible.

That’s what tomorrow’s appointment is about, to see if it is still a viable option because many years have passed since that initial conversation. I am hopeful for a positive outcome and for me to be hopeful about anything lately is a big deal. I’m also going to ask if he can’t reposition my kneecaps because they actually are higher than the joint rather than on top of it which is made it impossible for me to kneel or crawl without pain. This is my bright spot for the week because even if it turns out that nothing can be done a doctor actually listened to me and put thought into my request rather than just brushing me off.



3 thoughts on “Day 403: Silver Lining of the Week Volume One

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  1. Rachel, thank you for sharing your difficult walk. It helps to understand where a disable person is coming from. Have you ever thought of writing an inspirational book, where you don’t hold back but at the same time, you seek to encourage your reader? I wrote such a book when I had cancer and it is still a popular read for those going through treatment. Just a thought. Give me a shout if you want to know more. In the meantime, all the very best for your appointment with a doctor who LISTENS! New Year, New Tools.

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