The Mobility Chronicles: CP Edition.

I was driving home from work tonight trying to determine what topic to touch on in today’s post. So much has happened since I was last blogging regularly that it is hard to even know where to begin. At the same time, I know exactly where to start: smack dab in the middle. Because that’s life. It’s not linear. It just happens, and how we handle situations can all be seen in how we respond to them.

To put it bluntly, my mobility has been decreasing over the past few months. But first, let me paint the whole picture. As a child, I utilized canes and walkers and braces on my feet to help me walk. However, for the majority of my life, I have walked unassisted…until now. A few months ago, I noticed I was having some trouble walking, or put more plainly, I was “freezing up.” Here’s the thing. I can walk, but I have fallen so frequently as a result of my CP that it is almost as if my mind keeps that thought at the forefront every time I take a step. You know what they say….don’t think about pink elephants, but what do you do? You think about a pink elephant anyway. Anyway, what I’m trying to say is that I feel like every time I go to take a step, I’m telling myself “don’t fall, don’t fall,” but as soon as that thought process starts, guess what happens? I’m typically on the ground within a few minutes. Therefore, that thought process in itself has made it hard to put one foot in front of the other without some kind of assistance. Even in moments where I think I’m okay, my mind reminds me again, and I can’t get it out of my head. It shouldn’t be a big deal. I fall all the time as a result of my CP. I should be used to it by now, but alas, it’s not really something you get used to, no matter how much it happens.

Coming to the conclusion that I needed something to help me be more mobile and independent was really hard. I fought it for a long time. I’m still fighting it now to be completely honest. But I reached a point where I realized: if I am going to safely get from place to place independently, I need some help (side-note: I hate, HATE asking for help. I need to get better on that). Anyway, a few months ago, I started using a walker (named Hugo because that’s a way better term). It sucks, and I still hate it, but Hugo helps me get from place to place without having to wait for someone to come along and help me get from the side of a building to my car, which was less than 10 feet away. Yes, that scenario really happened. Once I waited as long as an hour for someone to exit a building before I finally just gave in and crawled on my hands and knees to my car. It was insanely humiliating, but I didn’t really have a choice at that point. The longer I stand still, the stiffer I get, and the more difficult it is to move. And you know what? That scenario I mentioned…it didn’t just happen once. It happened at least 5 to 10 times before I realized I needed to figure something out. In case you haven’t guessed, I’m stubborn…and I value my independence more than anything. There’s something you must understand, though. For my entire childhood, the number one goal was walking independently, and I got there. I did it! So now…having to use something to help me get around makes me really mad. I feel like I’m moving backwards, even though I know that’s not the case. I’m 25. I shouldn’t need a freaking walker. And yet, here we are.

While I know Hugo helps me get from place to place, already being at a point where I have to use him sucks. See, I thought I had more time. I didn’t know this was going to hit by the time I was 25. And truthfully, the hardest part is thinking about what other people think. Even though in my mind I know others don’t care, I’m judging myself for it. I’m caring about what I think about the entire situation. And in case you didn’t already catch on to this, I’m really hard on myself. Internally, I keep tearing myself down for having to use Hugo. I feel guilty I think. Guilty I couldn’t have done more to prevent it. And just angry at the image of it. Walking with a walker was not something I ever imagined for myself. I thought I skipped that part. However, I know from experience that ruminating on “What if’s” gets you nowhere. Still…stopping that train of thought is way easier said than done. I’m trying, but I know it’s going to take time.

As of right now, I’m making a conscious decision to allow people to help me more and to actually ask for help when I need it. It’s probably once of the hardest things I’ve had to do. It’s not easy to change thought patterns at the drop of a hat, but I know one thing. I have to start somewhere, and I know my body will thank me someday for giving it the rest it needs. When I’ll start that? Who knows. I’ll let you know when I get there. At this point, I’m just taking it one day a time. That’s all any of us can do.

10 thoughts on “The Mobility Chronicles: CP Edition.

  1. Hey lady. You are so amazing for sharing your vulnerabilities with the world. I have felt similarly on a smaller scale, when I had to get glasses recently and then got more restrictions on my license. I fear what the future will bring for my vision. But we are gonna keep doing this thing called life together. It’s too amazing a place to give up on. Just wanted to say I love you and I’m so excited that you’re planning to write more this year. Keep it coming!

  2. This post hits home in so many ways. I’m going through something similar- I use a walker now but as I begin to think about college, I’m resigning to the fact that I’ll probably have to use a wheelchair for long distances. And I hate it. Like you said, it feels like I’m moving backwards. And the part about falling- I do EXACTLY the same thing. Falling terrifies me. Thank you for being so honest and real- it’s incredibly comforting to know someone else is going through the same thing. ❤

  3. Though I can relate to anxiety about how others will interpret my occasional use of mobility aids, I mostly see them as tools of freedom. Whatever stereotypes or negative assumptions others subscribe to, are not my responsibility. I prefer to enjoy certain freedoms and opportunities facilitated by these aids then not be able to. Just my perspective. I would love to get your feedback about this recent post. Please let me know what you think!

    1. I understand what you mean. I think for me it’s hard because walking independently was the goal for my whole life and so now having to use something is hard on me. I know I shouldn’t care what others think. I think I still just have a lot of internalized feelings about it that aren’t necessarily easy to let go of. I’m trying though!

  4. Reading your blogs is seriously like reading thoughts pulled right out my mind. I fall a lot too and had a bad one back in September when I was with my mom and she couldnt help me up and I hurt my knees pretty badly. She bought me a transport chair to use for long distances now that I’ve been fighting her on using. I used braces, crutches and a walker as a kid too and then was able to walk on my own so I’m so completely stubborn about using any kind of aid as an adult. I always get questioned by people about my disability because I don’t have any kind of cane or walker so I feel like getting one would buy into their ignorant stereotypes of disabled people too. Anyway, I’m starting to write a novel here. Thank you for sharing your struggles on this. It’s super hard to ask for help when you’re trying so hard to hold on to as much independence as you can. It’s so comforting to know someone out there feels the same way I do and has some of the same experiences too.

    1. Jackie, thank you so much for your insights. I’m glad to know that I’m not alone in these feelings. I also agree that using a mobility aid is buying into stereotypes and I just DON’T want to feed that fire! I understand fighting the use of mobility aides. I feel like I’ve fought it for as long as I can pretty much…and yet there’s still a little voice in the back of my head saying, “But is this really the step I need to take now? Can’t I put this off a few more years?