I’ve been making the rounds with doctors. Which means starting my day by recounting my fall to a stranger.
Dentist: So, if you don’t mind me asking, what happened?
After a pause, I answer: “I had an accident a year and a half ago.”
Dentist: Was it a car accident? What happened?
Alina: It was a rock climbing fall outside, in Yosemite.
Dentist: Were you free climbing El Capitan?
And then I have to explain more. I resent their morbid curiosity. My gynecologist asked: “So, what happened to you, honey?” None of the visits recently have anything to do with my back or my fall. But the doctors pry the information out of me and then make suggestions like: “Well, you’re lucky to be alive!” They are so used to being in a position of power that they don’t realize what they’re doing. I think their lack of empathy and lack of professionalism is a serious problem. But I haven’t found a way to call them out on it. Again, the asymmetry of power in our interaction makes is hard for me to say anything. I try to convey my discomfort with tone and body language. They plough forward.
Sometimes you don’t know what you’re missing until you are given it freely. I have been working with an amazing orthotist to find a new brace for my right leg. When I sat in her office she sat down across from me, looked me in the face, and asked me what I needed. She listened to me for a long time and then offered suggestions. The first orthotist I went to, a year ago, literally and figuratively talked over my head. I went with my PT and the two of them stood over me and threw jargon back and forth. I had no idea what was going on. I was so happy I was getting closer to walking that I didn’t want to interrupt. But there were serious issues with the brace I got and I didn’t understand enough about my options to complain. So, finally, this is being set right.
The brace I’m getting has a new technology called “stance control.” What this means most basically is the brace keeps track of the phase of my step: am I swinging my leg forward or putting it down to weight it. Depending on the phase, it either locks the knee or lets it swing freely. This allows a much more natural gait. Instead of swinging sideways a right leg with a straight locked knee I will be able to step it forward and then weigh it.
In the meantime I’ve been walking with crutches on the Stanford track. I’ve gotten up to a full lap — with two rests — which is a quarter of a mile. I’m not yet to the point where I can handle the variable terrain of shops and sidewalks in the crutches, but I’ll get there.
My goals for walking depend on getting a better brace. But the technology available is old and basic. I know prosthetics have gone through a renaissance, recently, with designs that are tailored to an individual’s biology and activity level. In contrast, prosthetics are much closer to one-style-fits-all. There are not many choices and not much innovation. I have a big, heavy, plastic sheath that straps on with velcro and has aluminum struts on either side with a hinge at my knee. The hinge is manually locked or unlocked by a bar in back. It’s way too much brace for my small frame. It’s heavy and makes me use an unnatural gait. A stance control brace will be a huge improvement. My orthotist will also try to find a material and a level of support that is appropriate for my body,
There is still a huge gap, through, in what is available for prosthetics vs. orthotics. The difference in innovation might be because prosthetics are a sexier problem to work on. Or perhaps an easier one? Is is easier to replace a limb or to make an existing weak one function? There is also a greater diversity within paralysis patients than in amputees. In any case, I hope the future brings more innovation in bracing.
I’ll end with sharing a short video of me walking today. It shows a lot of my improvements in balance, strength, and speed recently. It’s also not beautiful: you can see how awkward it is for me to move my right leg and how much I have left to go. But I’m happy with the progress.
I think another reason why prosthetics are far ahead of orthotics, is that the former are seen as a permanent thing, while the latter as a temporary solution. Another side of it is that prosthetic users (bad word, what would be better?), as I understand, often take an active part in designing their individual devices, which itself may take a long time. But since it’s a permanent things, the time investment pays off in a long run. It is possible that people are unwilling to invest time in orthotics, because by the time they come up with the right design and manufacture the device, they may not need it for that much longer.
And on the subject of doctors – you have two choices. Don’t succumb to their power and say out right you don’t want to discuss it, as it is not relevant. You want to be polite, but you don’t have to bend over. You can even tell them how the conversation will go. Try this once, you’ll be amazed. Their other choice – laughing at the whole thing. So, here’s someone who thinks of themselves as super smart, and therefore being above others (as many doctors do), while in fact he or she is a regular moron, who is just good at pulling teeth out. Your gynecologist thinks you are lucky to be alive? What an extraordinary thought – lol.
> I think another reason why prosthetics are far ahead of orthotics, is that the former are seen as a permanent thing, while the latter as a temporary solution.
Yes, I can see that. But I think that’s the nature of some, but not all, SCIs. And for many individuals an ankle brace is required for the rest of their lives. Walking without ankle spring is much less efficient. I would love for somebody to create a way for me to have that bounce back in my step. Prosthetic ankles have come a long way, recently! What I have on my left leg right now simply immobilizes that joint.
>The other choice – laughing at the whole thing.
Yeah, I do that now. For example, when the dentist asked me the one thing he learned from reading the media coverage of the Dawn Wall… I laughed. It’s just funny. But I think writing all that out and realizing how much it bothered me has motivated me to speak up. I have resolved to put a stop to it next time it happens.