"My Legs Are Dumb"

In my late 20's, I learned a few things in doctors' offices. We finally found some medications that worked for me after the Lexapro ceased to be effective. The nursing student shadowing my psychiatrist realized I have inattentive ADHD. Most importantly, I finally found someone who knew what the actual heck was going on with my legs. Until a few years ago, the best way I could describe my condition was to say "my legs are dumb".

I had always been a toe-walker. I started out walking pretty exclusively on the balls of my feet. When I asked my parents why, the answer I got was "short hamstrings" that would probably stretch out as I got older. I can remember being around 10 years old with one heel that could touch the ground and one heel that couldn't. The "sit-and-reach" in gym class was absolute hell, but the teacher didn't believe me. I physically could not put both feet flat against a board. One year I actually had my friends hold my knees down while I did the sit-and-reach for the Presidential Physical Fitness thing. I flushed my participation badge down the locker room toilet.

By the time I was in high school, I could touch both heels to the ground, but it didn't come naturally to me. I still defaulted to walking on the balls of my feet. I couldn't run for very long before my legs were screaming. It was a pretty awful feeling being the only kid to "fail" the mile in gym class. If you did it in under 15 minutes, you pass. I actually tried! But trying resulted in wrecking myself and I limped and tiptoed my way around the track. Also, I had a good friend in high school who had a lot of experience being a medical patient due to a spinal deformity. When she caught me walking on my toes, she would say, "my physical therapist would yell at you for that".

When I was 18, I moved to the big city where I could take the bus everywhere... if I could get brave enough to try the bus. I tried the bus once. The bus driver got frustrated with me asking a question. I didn't try the bus again for several years. But that's okay, everything was in walking distance! And walking is good for you! So for about 3 years, I walked a little over a mile to school and the same distance back, several days a week. It was a nice walk, and for a while it went well. I felt pretty powerful, being able to walk so far so consistently.

And then it stopped going well. I would walk a few blocks before my calves would start screaming. I would have to rest several times on my way home. I would stand at corners waiting for the light to change, shifting my weight from foot to foot to give my legs a moment to recover. That's when it got bad enough to convince me to take the bus. Thankfully, some friends were willing to take a bus trip with me and show me the ropes. After college, I got a job that was about the same distance from my apartment as the school was. I could walk in an emergency, but I was a regular bus commuter now.

A lot of life happened over the next few years. Eventually, we get to the summer of 2019. I'd been seeing my partner (over the Internet) long enough that it was time for me to meet the family. I was invited to go on the biannual trip to Myrtle Beach. It was really great! And it was a lot of walking. But that's okay, by now I understood that a period of high activity was going to be followed by a period of recovery. When I got back from the trip, I expected it to take a week or two for my legs to relax again.

Well, they didn't. Months passed, and the short walks around the office and to-and-from bus stops became ordeals. I bought a folding cane from CVS and kept it on me "just in case". I started to worry about being a young person with a cane. What if someone notices I didn't have a cane before, but now I do? What if someone asks me what happened? What if someone thinks I'm faking it because I use the cane on whichever side is worse that day? And how long is this going to continue?

It was time to start looking for answers, again. Somewhere earlier in this timeline I did try to talk about this with a doctor, a GP. You're supposed to start with the GP, right? She didn't have a clue what I was trying to communicate. She told me to lose weight and ordered an ultrasound for my legs, because the only answers to "fat girl leg pain" are weight and blood clots. Yeah, so that was the last chance I gave her.

The next place I went was to a physical therapy office. I noticed a place near my apartment, Athletico Physical Therapy, that had a big sign telling me they take insurance and didn't need a referral. I decided to cut out the middle man and go straight to PT. I had no expectation of a diagnosis, but a PT would at least understand the anatomy and mechanics at play and could help me deal with the pain in a practical way. That was a pretty good call on my part. I met some great people in that PT office and learned some good strategies to cope with my weird dysfunctional legs.

Of course, physical therapy only works if you stick to it. This clearly wasn't something that would just fix itself after some exercise and cease to be a problem. I eventually ended up back where I started in terms of pain and ability. My next thought was to find an orthopedic doctor. They deal with muscles and bones and movement, yes? There was one sports medicine doctor nearby who didn't require a referral to see me. So I scheduled an appointment.

That was the most surreal medical appointment I've ever had. It was just like the stories you read online of women being completely ignored by their doctor. This guy did not believe me. Maybe I wasn't explaining my symptoms very well, but I thought if I could outline the whole progression of my experience something would jump out at him. He straight up didn't believe me. He even talked over me. When I realized he was talking over me, I doubled down and kept on speaking. He did not stop. It was amazing in the worst possible way. Eventually, we got to the "what do you want me to do?" He could send me to more physical therapy, or he could give me a referral to see someone else. I definitely wasn't going to see him again; this was actually his last week in the office. Fortunately, the referral turned out to be exactly what I needed.

I went to the orthopedic department at Froedtert hospital, and they took x-rays of my legs. Right away I communicated to the medical assistant, "look, I don't know if I'm in the right department for this. I don't know what's going on. I just hope someone can tell me." And you know what she said? "Well, even if you're not in the right place, we'll make sure to get you where you need to go." That was one of the best things a human has ever said to me.

I met a doctor and we looked at my x-rays. I picked up a fun fact about myself: my tibias sit farther forward than they're supposed to. That doesn't really mean anything, except that it puts an upper limit on my range of motion if I were ever to get to some kind of normalcy. The doctor listened to me, looked at me while I spoke, and asked questions. I had concerns that this was going to end in surgically lengthening my hamstring. He said that was a thing that they do, sometimes, but actually he knew exactly where to send me and it wasn't going to be surgery.

My next appointment was with the Physical Medicine and Rehabilitation department of Froedtert's Neuroscience Institute. I told my story one more time, and Dr. Ketchum told me he sees it all the time and there was a treatment we could try.

The answer was spastic diplegia, a form of cerebral palsy. A brain injury at birth causes some of the muscles of my legs to fire all the time. They keep getting signals to go, and they never really relax. The muscles that point my toes keep on pointing them to the best of their ability, 24/7. It was incredible to hear there was a condition that explained my symptoms so perfectly. I wasn't even shocked or worried about being told I have brain damage. At first the doctor seemed to tread around that, a little, because I'm sure nobody is really happy to learn, as an adult, that they've had brain damage all along. I thought he was saying "maybe" I had it, but the more I looked into it, oh yeah. I definitely have exactly that.

I was really excited to tell my parents about it. It made sense. I knew I was an emergency c-section. That would be because I was having some trouble getting oxygen, and a little piece of my brain didn't like that. It seemed like my parents needed a minute to process it. It wasn't "denial", per se, but again, it can't be a comfortable feeling to suddenly know your kid had brain damage all along. But the more we thought about it and looked into it, the more it made sense. Finally, I had an answer.

The treatment is that I get Botox injected into my legs every 90 days. It forces the over-active muscles to take a chill pill, which allows the muscles experiencing pain to get some relief. It's not my favorite thing to do, but a few pokes and a couple little cramps are worth the weeks of relief. My legs are still kinda "dumb", but I have the support that I had been searching for. Relief for my legs, and relief for my mind.