So here we are, almost six months post-SDR. In a way I can’t believe it’s only been six months and in other ways it definitely feels like it’s been that long. It’s got me thinking about how far I’ve come since then and where I could improve.
Not gonna lie, I often feel like I haven’t made any progress at all. I still need help when walking with the cane outside, which basically means I need to be accompanied whenever I go somewhere. I really only go out to one place anyhow which is physical therapy. Still, I need help when I do. Everyone has been saying I’m doing so well. I don’t necessarily disagree, it’s just that I’ll consider it a success when I can walk with the cane across open space unassisted, or even down an entire block without holding onto the person I’m with. Walking across open space without a cane? That’s like hitting the jackpot.
I know, I know, things don’t just happen or change overnight. I’m being too hard on myself. Some days the progress is slow, other days it’s not. To ease away my blue feeling, I decided to look at some old videos that I recorded after my surgery. I walked with a cane for the first time ever on February 27, almost two weeks post-op. In the video I was so shaky, tense, and nervous. My steps were small and fearful. Honestly, rewatching it had me blown away at how far I’ve come. I kept comparing it to the last video I recorded, mid-June, when I walked with a cane, accompanied, down my block. The difference is night and day.
Viewing progress in terms of the day-to-day can be hard or even almost impossible. Looking at the big picture has helped. So I remind myself and any of you who happen to be in a tough spot or feel blue for whatever reason, to remember where you started and how far you’ve come since then. Progress isn’t linear. I suppose watching those videos was a reward to myself, emotionally, like a pat on the back. I guess it’s important to do that once in a while, especially if/when it may feel like nobody else has even noticed.
Thing is, though, the whole “going unnoticed thing” is definitely not true, despite the number of times I might’ve felt badly about that. It’s gotta be my mind playing tricks on me, or the fact that I almost never let myself off the hook. Whenever that happens, I have to tell myself the things my mom has told me, like you walked with crutches for so many years. This is your first time with a cane. Give yourself more credit! Or give it a chance.
My brother has said similar things every once in a while, my favorite being to cut myself some slack because you’re rebuilding yourself. This is so true, especially since the absence of spasticity gives me the chance to rebuild myself physically. It’s true for my state of mind, too. Like I’ve said before, I thought I plateaued before SDR, then when I got my acceptance my whole world blew wide open. The chance of better mobility was worth every sacrifice. I haven’t regretted going through with the surgery once, not for a single moment. Recovery has been arduous but I wouldn’t give up this opportunity for anything.
Timelines can be difficult to predict, especially for something like this. So I never entered into this journey saying “I’ll be using a cane after x days/weeks/months.” Instead I told myself one day at a time. It’s so important to celebrate and acknowledge the small victories. Like recently, when I was able to take a complete shower (getting in, showering, and getting out) all by myself for the first time (I could do the first two things alone, just not the last thing). That was huge. It was liberating. Sometimes I get so caught up in the “big stuff” like gait training and strengthening and walking around alone, that I forget about the other elements of my recovery and progress. Every piece matters and every piece contributes to the whole.
When I used crutches, I saw the world in a certain way, largely in terms of accessibility. It’s similar when I use the cane but this time around I see more possibility, more freedom. It’s new and scary but also really exciting. Whenever I feel like quitting, I remind myself of that feeling. Whenever I miss my crutches and that independence when using them, I remind myself of that feeling. I’m literally retraining my body and my brain. Things like that take time!
The Spastic Diplege 