I’m not quite ready to write about everything concerning my leg braces devices. For me, the story includes the reason I got hurt, all of those months in the hospital, the first year (plus some) of physical therapy, learning about the ExoSyms, being told I was a candidate, the fundraiser, the planning and anticipation, traveling, Seattle, training, and, and, and… I keep forgetting that it has only been 84 days since I got them (2 month 23 days). They are helping me for than I could have ever imagined. I will have to go a few days without them next week and I’m scared. They changed my life. I legitimately forgot what it was not like to be in constant pain. So much so that when my mother used ask if I was hurting, I would have to think about it. I’d ask myself, is this an unusual amount of pain? My internal pain meter was starting to lose accuracy. When I put on the devices and walk, it is like I am flying. There are things I have to work on, sure. For instance, I’m jogging (which is crazy), but only after warming up, I can’t do it spontaneously, yet. When I walk, I have to make sure I’ve adjusted my body correctly (eg. I have to remember to bend my knees), but after that, I barely have to think about anything at all. It’s pure magic. It’s not that I never hurt anymore, let’s be clear, but now my pain usually has a reason. It is because I walked around a lot or went to PT. I’d say my pain has decreased overall (aside from anomalies) 80%, if I’m being generous. That has given me more energy and time, every day. The fact that I will be wearing the ExoSyms indefinitely has only recently started to hit me. Sure, technology will advance, and maybe something new that could help me will come along twenty years from now. But, at this moment, this is my forever. I kick myself when I think about this because I’m lucky. Before my forever looked a hell of a lot worse. At the same time, I’ve already found myself getting annoyed because it feels like it takes a long time to get ready, now; or because it is hot; or that I have not found a way to convince myself I can ever look sexy again (as if I ever did before, lol). Maybe that is why I didn’t fully let myself realize this permanentness before getting them. Sometimes, it feels like there is so much to think about [these braces], but, other times, it feels natural, so that's that. This is just how it is, and it’s my new normal. I wanted to write this, partially, as a thank you to everyone who helped me get to where I am today, that is, mobile and wearing Calvin and Hobbes,* and me saying that the trouble was worth it. These devices have absoluetly changed my life. A Timeline
I could go on and on and on. Some achievements I’ve written down next to the date and a lot of exclamation marks, and others happen over a longer period of time. One thing that has happened many, many times since the beginning is that I’ve fallen down. And I’ve gotten myself back up, every time.
3 Comments
Suzy Cashwell
9/2/2019 12:03:37 pm
It must be overwhelming to have this new normal, but you'll get used to it, I'm sure. And you probably won't think so much about how it takes longer to get ready, just as I don't think about how I need to put on my glasses before going out the door. I'm not trying to belittle the ExoSyms, but I have a feeling it's going to become such a habit, it just won't interfere the way it has in the past. At least that's what I hope for you. I love you.
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Lily Benavides
10/24/2019 06:43:38 am
I was born with bilateral clubfoot. I was treated with the Ponseti method when I was a baby but things started getting complicated as I became an adult. I have had two surgeries on my left foot and one in my right foot. I am 54 now and I'm in constant pain not just in my feet but almost everywhere because of the imbalance and because I am not able to do much exercise. I am fundraising right now for the Exosyms. I hope I can reach the goal because that would be a life changer. I want to be able to do some things like going for walks, hiking, and maybe running one day. One of my grandkids, my 13 yo granddaughter hopes I can get them so we can go places together.
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Whit (owner)
11/9/2019 03:34:53 pm
I wish you the best of luck! My only tip is to reach out to everyone you've ever known and ask them to do the same. I really hope you are able to get them soon.
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Who Am I?Hi there! I'm Whit, my pronouns are they/them, and I write a lot.
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