8 February–24 March, 2021
I’ve mentally composed bits and pieces of a blog entry so many times that it seems as though I must have already written it. But I haven’t, so here we are, as I finally buckle down to write during my second spring break of the pandemic.
When I first got my ExoSyms, I was told it would take one to two years before I was using them to their full potential. I liked the idea of marking time, tracking that progression, until I could say, “It’s been two years and look at me now!” But I’m nine months in, and I don’t feel like marking time anymore. I’m no longer going to put the number of days in the titles of my posts. Progress is not linear, and there’s no endpoint. I keep thinking, What if they’re not for me? What if I just don’t progress beyond walking on a flat surface with poles? Maybe my body truly cannot use them to their full potential and it’s a case of too much, too late.
I’m part of a Facebook group for women with cerebral palsy. Recently, someone wrote about how she used to walk independently and now she needs a walker. She fights the feeling that she just needs to “try harder,” that she shouldn’t take twice as long to clean the house and use twice as much energy doing it as she used to. Others chimed in, feeling the same. The decline is real. And it’s making itself known to me in very real ways. If ExoSyms had been available to me when I was twenty or twenty-five, before all the chronic pain and decline really took hold, maybe I could have really used them then, and extended my peak quality of life. But now? I just don’t know if I can do it.
The pandemic certainly hasn’t helped. It’s had a physical and mental effect on all of us. Maybe there’s a small group who were really able to use the time at home to cook well and do yoga and take up running. For the majority of us, our physical activity has plummeted and our time in front of screens has skyrocketed. Of course it’s not good. I’m not sure that I can ever achieve my pre-pandemic level of activity again. In 2019, when I first started using trekking poles, I was delighted with how they helped me, what a great option they were for longer distances. Now? Now I need them. I have gone from walking independently to using a mobility aid, just like so many others with cerebral palsy.
With PT, I had left off with my therapist at a loss and ready to let me go for six months. Instead, I decided to keep going. When I returned mid-February after a month away, not having pursued more x-rays or the facet block shot as he suggested, I said that I think consistent therapy is a worthwhile thing. My cerebral palsy is not going anywhere, and I can get stretched with a therapist in a way that I simply cannot replicate at home. That session was the first time this therapist had ever really explored my increased tone and decreased range of motion, I think. (He has taken over from C, who is recovering from surgery, and we had been focusing on core and glute strength and lumbar issues.) So this was for him an introduction to how my body works. He realized that, yes, actually, I can benefit from passive stretching. There was a “wow” moment, as in “whoooa, that’s tight.” Yes, I thought, now you understand.
He did stretches that I can’t do alone and encouraged me to try them with assistance from my husband. So, I’m back to going every two weeks. We’ve even done a couple ultrasound sessions on my right piriformis, which is more often painful than not.
Also in February, I finally made myself get in touch with Ryan at the Hanger Clinic and let him know what’s been going on with my back, and that I hadn’t walked in my ExoSyms for more than three months.
“So you’re really starting over then. That’s okay,” he said. It’s not entirely true, as I’ve tried hard to keep up with strengthening my glutes and core, and I hope I’ll have at least maintained what strength I had in the fall. Ryan suggested some back support and told me to practice walking fifty feet five times at a stretch and then take the Exos off. (Rather than trying to wear them for hours at a time, navigating around furniture, etc.) He sent me four brace options. I sent those on to my physical therapist, and ordered the winner.
My new brace arrived on March 8th. This is the second time that I’ve made an assumption about physical aids and been proven wrong. The first was about the poles, and how I thought they wouldn’t help and just be a tripping hazard. With this brace, I had wondered before if back support would help, so I was open to trying it right away. I still figured it was likely that it would just be uncomfortable and not do much.
I have to lie on the floor, bend my knees, and make sure my back is flat before I strap myself into it. The first time I did it, and got myself back to a standing position, I said, “Whoa.”
This thing holds me up. It holds me in. It’s there, supporting me. Hugging me so firmly. It doesn’t let me take steps the way I usually do. It’s amazing to realize how much my lack of trunk control must be affecting my gait, my alignment, my whole body. Because I don’t really feel like I do lack core stability. It’s another “Oh” moment. How can I know what stability feels like if I’ve never felt it? This little bit of stability afforded to me is like a glimpse into another world.
The worry, of course, is that my core will become weaker as I rely on the brace. I don’t think this will happen. It’s more like it’s giving me a continuous awareness of my core. Like when a therapist or instructor touches your abdomen and says, “Tighten here.” It’s easier to do it when you know where to focus, or when you have something to tighten against. The brace feels similar to the super-tight belt and pole combination, used during Hanger training week to teach me how to “squish” with each step. I think for me the belt did more than the pole. As soon as Jared took it off, I didn’t feel my core as well, couldn’t tell whether I was really squishing.
I may be feeling a further benefit as well. It’s a little like having my own personal weighted blanket on me at all times. I’ve never tried a weighted vest, used with kids on the autism spectrum, but I’m guessing this is similar. It’s the firm hug that calms the nervous system. It’s Temple Grandin’s squeeze machine. I’m not saying I’m completely calm now, but I can say that I like wearing this. If you have anxiety, it’s an inexpensive option to experiment with. Yes, it can be uncomfortable. Yes, it tends to ride up and need readjusting throughout the day. Yes, it makes wearing clothes interesting. And yes, it’s going to be way too hot in another week or two. But–I like it.
I’m tired of letting the pandemic get the best of me, and with the stability for my back that I needed, I’m trying, once again, to increase my physical activity. I returned to three seated workouts I like on YouTube. I find these extremely challenging once they get going, and have started again with only fifteen minutes. The only time I’ve made it through an entire workout (several years ago), it took me and my husband months to work up to it! All three of these workouts are truly gems. Along with some schnazzy workout gear, they all feature people of different sizes and races and abilities. Two of the workouts have real, live people with cerebral palsy. It’s truly an awesome sight to behold. As I feared, however, these arm workouts are really, really hard on my tight neck and shoulders, so they are not for every day.
As such, I’ve also returned to my trusty Yoga for the Rest of Us DVD that I’ve used intermittently since 2006ish. I’ve been doing it before work. This is not as impressive as it sounds, since I no longer have to be out the door at 7:30 am, but still.
I’ve also been taking more walks in my brace and with my poles. Instead of twenty slow, careful, cautious minutes worrying about my back and trying to engage my core, I can now do 60+ slow, careful minutes engaging my core.
A week after getting my brace, Monday, March 15, I put on my ExoSyms to try my first true practice session since November 1st. I no longer walk across the house without poles, instead making sure my poles are right there when I need to walk to the front door. Day 1 was hard. My right hip was so sore and tired. The “Is progress even possible?” thoughts resumed. I did my three up-and-backs along the sidewalk and made my way back to my front door, ready to take them off. The next day, I did it again. The third day, I reported back to my physical therapist and got stretched. Thursday and Friday, I put them on again. It felt like a good week. At least I was doing something with them on. I had this realization: I need to practice on Saturday too. No more giving myself the “day off.” I don’t need a whole “rest day” after only ten minutes of dedicated practice. After all, I’m not pushing myself or taking risks or hurting my back now; I’m slowly building endurance. This is something that needs to happen every day. That’s all there is to it.
Saturday morning came, and I fully and absolutely did not want to strap myself into my four pieces of heavy carbon fiber and take myself outside. Not for the first time, some of the most relatable lines from Leonard Bernstein’s MASS came to mind, from “I Don’t Know”:
Why I drift off to sleep
With pledges of deep resolve again,
Then along comes the day
And suddenly they dissolve again.
I don’t know…
So many pledges of deep resolve we make, only to let them go when we simply would rather not do the thing. My husband said, “You just have to do it anyway. Even as you’re telling yourself you don’t want to, put them on.” He was right, of course. So I put them on anyway on Saturday. And on Sunday. And on Monday, the 22nd, something happened. It’s always hard to know if I’m using my core and squeezing my glutes and “loading the devices” all correctly, all with the right timing for each step cycle. I try it different ways, not knowing which way is right. I remember Jared telling me to kind of lead with my pelvis, but how do I do that and lean into the knee cuffs properly (load the device)? Also, when I’m stretched well in PT, I can actually feel a little looser at the front of my hip for a while. Which means that I have more range of motion in my step. I can actually straighten the knee before the foot comes off the ground to swing through, rather than keeping my knee slightly bent throughout. At least, that’s what it feels like. I don’t know if that’s what’s actually happening.
So, right now I have a smidge longer stride that I have to figure out how to coordinate with the Exos. Do you know how weird it is to suddenly have a longer stride? It throws everything off if you actually try to use it. But looser hips and a longer stride are very good things, so now I’m trying to see if I can keep it going until my next professional stretching session on the 31st. I’m out there in my back support and my Exos, practicing, trying to incorporate this new stride and coordinate everything. And suddenly I’m walking faster. It’s a week after I’ve started walking in them again, and I’m startled to realize I seem to already be going the same speed I’d built up to last fall. Maybe even faster?
It felt like I was just walking. It felt really good. There’s no way I can know where I’ll go from here. If or when I’ll progress beyond using poles on a flat ground. All I can do is keep practicing.
Here’s video from March 23rd, and a side-by-side with the last video we took before the back injury last fall. Any difference? Hard to tell.
What Happened to Your Legs? 