Monday, July 13, 2015

CP and the struggle between being realistic and living life to the fullest...

It was such a good day at the beach—every breath of air was sweet and salty, not like chocolate pretzels sweet and salty but the kind of sweet and salty that you can only find by the ocean...and the water was a little chilly, but not so cold that it ached with every step.

And yet, as I watched the other beachgoers moving so carelessly and effortlessly as they threw themselves at the ocean and bounced through the waves, I couldn't help but ache. I wanted to join them so badly, to run past the shoreline until the waves climbed above my waist, to duck my head under and feel the saltwater sting my eyes. I knew that I could have asked my brother or my parents to take my hand and they would have, but I didn't want to inconvenience them, and so I just pretended that I just wanted to go in up to my ankles anyway.

It all sounds so trivial now, but it's just so hard, especially at this stage in my life. My friends and my brothers are traveling, exploring the world and going on trips and being 21-year-olds and sometimes it feels like all I can do is sit back and watch because of my CP.

A few weeks ago, my two best friends went on a week-long trip to Europe and they asked me to join them. I've never been out of the US before and oh, how I wanted to go with them...but the reality is, with my disability, I can't just make spontaneous plans. I have to consider whether I will be able to manage the airport, my bags, walking long distances...I have to consider whether I will be able to manage the curbs and the steps, and whether my friends have their hearts set on a tourist attraction that wouldn't be practical or possible for me. And so I had to say that I couldn't go, and I blamed it on the fact that I have an internship this summer—which, to be fair, was a major complicating factor and a perfectly valid excuse. But I couldn't help wondering whether I would have been able to go on that trip if my life had turned out differently and I was born without CP.

Now those same friends are planning a road trip in a week or two, and they are begging me to join them. I am sitting here in tears because I don't know what to my heart, I want to go. I don't want my CP to limit me, to hold me back. But I also don't want to hold them back. I know that if I told them this, they would assure me that it wasn't an issue, and for sure they wouldn't leave me out—they're the kind of friends that head for the flattened part of a curb automatically, and they do an amazing job of being sensitive to my needs while also not focusing on my CP. But I want them to be able to hike and swim without reservation, without worrying about whether I can safely join them.

And I have to consider my own personal well-being as well...what if the lake is too deep for me to safely swim? I'm not a bad swimmer but my balance issues mean that I have to be more careful.

Sometimes I just wish I could participate in life as fully and as freely as everyone else seems to be able to, without having to worry about any of these "extras." I'm really struggling with finding that balance between living my life to the fullest without letting CP dictate what I can and cannot do and being realistic and responsible about my limitations.


  1. Oh my heart hurts for you reading this post, my friend. I believe though that your friends invite you out of friendship and that your CP would not change their plans at all. I believe that you are part of a great group who if you said go ahead and jump off the dock, I'm fine with my ankles in the water they wouldn't pressure you nor would they not jump from the dock.

    You only have one chance to be 21 and take road trips with friends. I think you should go for it, but tell them your concerns. So they know your hesitation and will know going into the trip that there will be some things you will not be able to participate in. And that's okay. It doesn't change the trip at all nor will it make the trip less than it should be.

    I do so wish you could participate in life freely and without fear. But I admire you for putting that fear out there. I also think you do live life pretty bravely. Think of all the limits people have put on you that you have blasted through and triumphed.

    You, my friend, are braver than you think!

  2. I understand this feeling so much. I also have CP, and there's just always this thought in the back of my mind that I don't want to inconvenience other people, and I don't want to be a burden to them, even though they say it's no problem at all.

    I still don't have a good answer for you on how to deal with it, but I've learned to pick and choose the situations that I want to be a part of, depending on who I'm with and my physical capabilities. So I would say yes to a road trip with friends, but not necessarily a trip around Europe. I don't ask for help all the time, so that I don't feel like a burden, but just enough so that I feel like I'm living fully within my limits.

    Second, after talking with my friends about it, I've realized that it's usually a way bigger deal in my own head than it is for them. They honestly don't care if I sit on the beach while they try surfing lessons, or mind helping me up the stairs if we climb a steep hill. The way I've learned to look at it is that I have just as much of an opportunity to experience life as they do, and that I shouldn't feel guilty if I need a little extra help sometimes, because everyone does, just in different ways. Of course, only you know your limits, but I would say go for it, and push yourself as far as you feel comfortable.

  3. Ok so I'm old enough to be your mom but we've become friends through blogging so I'm going to give my opinion as your friend and not your mom - GO. Go on the trip. Tell your friends how you feel and opt out of hiking when that makes sense for you. I hate that you have to consider all of these things so much but I also want for you to experience as much as possible. I'm confident that your friends will be okay with you saying no to certain activities and that they will hold your hand or your elbow when you need them to. Maybe that's partly the mom in me coming out because I hope my son's friends can do the same for him one day. But I think you can do it. Asking for help is an okay thing. It sounds like it may suck but usually it's a lot easier than we think it will be!!! I can't wait to find out what you decided!! So much love to you (also Tucker just turned SIX!!! Which means I've known you for almost three years!!!) :)

  4. Hi. I really like reading your blog but I've never commented before. I am 21, and my cousin, who is also one of my best friends, also has CP. I can tell you that from your friends' perspective, if they invited you,they want you to join them. Whenever I, or our other friends, invite my cousin, we let her be aware of the limitations and allow her to decide if she would like to participate. For example, if there is a lot of walking, she will take her wheelchair instead of a walker. She is my friend, and I want her to join in as much as she can, she is not a burden to me or to our other friends. She knows that she needs help and will ask for it, like if she needs to be lifted in an out of a boat. She might also decide to sit out an activity that is too difficult for her to manage. I let her decide what is the best course of action. And even though the trip might require extra lifting or slight accommodations on my part, it is worth it, because she is my friend and I want her to be there. Your friends are aware that you might need extra help, and if they weren't ok with that, they wouldn't invite you. If you think you will enjoy the trip, you should go. Don't worry about your friends, they will be just fine.

  5. I agree with the commenters above. Go. Be sensible about it, don't do something that's really going to mess you up, but don't not go because you're worried of what might happen. That said, I totally get where you are coming from. I have decided not to go to a high school reunion happening across the country from me, because it just feels like too much for me, due to my disabilities. I'm okay with that decision, but I also know that in a year or two I will probably kick myself for it. Go. Make sure your friends know what's involved, but go.

  6. Oh, do I relate to this. I remember being 18 and just really wanting to jump and dance...but I think I felt that BECAUSE I was in a really ableist environment, if that makes sense? When I am with other disabled people I don't feel like I am missing out. I feel like I am normal.


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