On my fourteenth birthday, my mother asked if I felt like I was fourteen. “I feel like I’m forty,” I intoned. Teenangerhood is such a joyous time.
Now that I am forty, I can say, like everyone else who’s made it this far, that it doesn’t feel as old as you imagine it will as a kid. Sort of. It’s that whole “the days are long, but the years are short” thing.
I remember having energy once. It was a Wednesday. It must have been over a year ago because I was working outside of my house. I felt so different from my usual self. More awake. More alive. I was functioning on another level of existence. I was more patient with my students. And it felt easy to be patient, not like I had to stop and reword my response into something that didn’t sound short or exasperated. I enjoyed my students more. I smiled more because I felt happy. Wow, I thought, some people feel like this most days. The ones who are excited to wake up and go to work in the morning. Who seem so genuinely happy. I don’t dislike my job. It’s a good fit for me, and there are moments I truly enjoy. But no one would ever say that I am energetic or enthusiastic. I make it through my day.
But that one day. That day I got a tiny glimpse into what life could be like. People who have drive must feel like that. People who work so much and sleep so little. People who ACCOMPLISH THINGS, who dedicate their lives to their calling. Booker T. Washington. Ruth Bader Ginsburg. So many people. They must be people who have energy. They operate on another level.
I don’t know what was different about that day. Did I just get really good sleep? Have some kind of spike in the good hormones? Whatever it was, it was an amazing experience.
Now it’s over a year later, and I’ve become one of those patients. One of those patients who says it hurts, but no one can find anything wrong, so they send me back where I came from. On my video call with the GI doctor, he wanted me to tell him an exact number of times I’d had heartburn over two weeks. I didn’t have that number, but it wasn’t my main issue. I told him it’s improved with diet changes. He says my endoscopy results from October look normal. (Even though it says reactive gastropathy with mild chronic stomach inflammation right in my records. I guess mild inflammation is just fine.) He says it doesn’t sound like reflux. I started tracking my food and my symptoms so I can give the next doctor a flippin number. I’ve eaten chocolate and other acidic foods and had heartburn about half the time, so I stopped again. My eyes are glazing over even as I type this. The point is, he sent me back to ENT, a different one this time, because I don’t have any symptoms of a GI issue that would cause throat pain, so maybe it’s a sinus issue. She prescribed a bunch of antihistamine type stuff to try even though she couldn’t find much of a problem.
On the cerebral palsy front, my physical therapist doesn’t know what to do with me either. In January, I brought in my TENS unit so he could show me how to use it on my back. I’ve had it for a long time, but I don’t like the feeling of the sticky pads and it seemed like a lot of hassle for not much. Plus electricity scares me. After trying it out and reporting back (it maybe kind of worked if I meditated and used the heat pack all at the same time), he suggested I look into the facet block shot in the spine that my GP mentioned. Then he said I could take a break from appointments and get a new referral in six months, or see him in another month if I wanted to keep it going. Basically, “I don’t know what to do to help you. Your call.” I made an appointment for a month later.
For the last three months, I’ve stayed out of my ExoSyms and tried to give my back “a chance to heal.” After the initial injury improved a little, my back has stayed the same. As I’ve said before, the pain isn’t bad, but whatever is going on is decreasing my function quite a bit, so it doesn’t feel safe for me to use my ExoSyms. But it’s been so long, this might be my new normal. I’ve got to just work with where I am right now.
So I put them on and I stood in a doorway for ten minutes. The next day, I did it again. Stood there. For ten minutes. I am taking short walks outside without Exos, slowly and carefully with my poles. Trying to engage the core. Feeling so far from what I did before the pandemic. Still a little bewildered with where I find myself.
I’m ready to go back to a functional medicine approach. Silly me to think that some antibiotics for strep in 2019 or some reflux meds in 2020 would help me feel better. I’m ready to look at other modalities for CP as well. Chiropractic work scares me. Maybe some myofascial release? I’d really like to have the vaccine before I commit to one-on-one bodywork though. So who knows when that will be.
Here’s what my birthday looks like this year. I’m also getting some super nice socks, but I’m waiting until the actual day on Tuesday to open those.
What Happened to Your Legs? 