Tuesday, January 7, 2014

Independence vs. Safety

Tonight I am so relieved to write that I am breathing a million times better. The medicine I'm taking didn't seem to have an effect at first, but apparently it takes a few days to kick in, and it's finally working! It essentially reduces the inflammation that occurs when I'm exposed to a trigger so that I can breathe more easily; I have to take it for a month, and then, as instructed by my doctor, I'll stop. If my symptoms have disappeared after a month, then it was probably just temporary viral-induced asthma that was causing me to have airway issues. If the coughing and breathing problems flare up again after I stop taking the medicine, then I likely have chronic asthma and I'll have to take the medicine long-term.

I really hope I don't have to deal with asthma on top of my cerebral palsy and bleeding disorder, but I'm trying not to worry about that possibility because there's nothing I can do about it.

 In the meantime, I've still been having a relaxing break! I finished all of my exams, so I've just been enjoying life...I went to the movies with some friends, did some baking with my mom (brownies!! and nothing exploded so I consider that a success), did some painting with my brothers and some friends (just in case I needed to be reminded why I'm not an art major), read some books (I lovelovelove losing myself in a good book!), and spent a couple days being supremely unproductive in my pajamas (every worthwhile vacation has to have at least one "pajama" day!). Tomorrow afternoon, I'm going to tutor "my" eighth-grader (I call her "mine" because I've tutored her in all of her school subjects since she was in the third grade! Just writing that makes me feel old...) in math and Spanish, and later this week, one of my college friends is coming to stay for a few days!

A couple weeks ago, a couple of my good friends decided to head to NYC for a day, and they really wanted me to join them. I decided to pass because...honestly? The thought of NYC terrifies me. I thought of the icy pavement, crowds, trains, buses, and all of the walking we'd have to do and because of my CP, I just didn't feel like it was a safe idea for me. I explained this to my friends and they understood completely, although I felt a little guilty at first for letting my CP hold me back.

This seems to be a common theme in my life lately...balancing independence with safety issues! Sometimes I feel like it's so hard to be a teenager with health issues in a world built for able-bodied people...I want to be like everyone else, carefree and limitless as I experience life, but that's just not my reality. I have to accept that I'll always have to worry about snowbanks, icy patches, curbs, accessibility, and railings when I'm out with my friends. And sometimes I'll have to swallow my pride and stop worrying about inconveniencing people because there are some situations that I can't safely handle alone. For the most part, I'm coming to terms with that.

Sometimes it's hard to be different in a crowd full of people who all seem to be the same. Sometimes it's hard to feel like I have limitations that my peers don't have. But ultimately these differences and limitations are just one part of who I am, and I know that I am a stronger person because of them.


  1. So glad you are feeling better xxxxx thank you for sharing your words with us and I hope you know I am cheering you on as a wonderful person who just happens to have cp xx

  2. Yay for drugs that help you feel better! I totally get that balance between independence and safety. As the mom of a 17yo daughter with CP, I worry... A LOT! But, then, every time I let her do something on her own, she surprises me. So, why does it still surprise me? I think it's a balance all parents face, but the consequences for "failure" are so much greater for special needs kiddos. Keep pushing yourself! (PS I'd be a bit scared of NYC too! - even though I've been there several times, but not in the last 20+ years)

  3. Oh GOOD! I'm so glad you're feeling better. Thank goodness for that.

    And to be fair, I think you're very sensible to know your limitations and stick to them. Yes this might mean that the 'not like everyone else' is highlighted, but I bet if you ask them (and this may not pertain to physicality per se) you'd find that a proportion of them also feel 'not like anyone else'.

    I'm glad you know that you're stronger because of this. You have a unique set of challenges, and you're handling them well. I hope asthma doesn't turn out to be one of them.

  4. Glad you are feeling better! It sounds like you are very balanced in your decision making involving risks. You're not cowering in a corner all the time, but you're not shy about passing on something if it seems like it's too much risk or difficulty for the expected payoff. You may find that your close friends become a little more aware of the factors that make you pause, and those that don't. Maybe they'll invite you to go with them to NYC when you're home for the summer, because then you won't have to contend with icy pavements. Or, maybe they'd agree in advance to arrange for the trip to be by car, to lessen the amount of walking you'd have to do. Wishing you well on your return to school!

  5. I think you're so smart to know your limitations and go with what feels right for you. We all have limitations that stop us from doing things and that's ok - because the rest of the time our strengths allow us to try new things. It all balances out :) So glad to hear your breathing is much improved!

  6. Balancing independence vs safety is something we all must learn to do. And I am so WITH you re NYC. Also I am so tickled to learn how much you love to bake! Yum, brownies!


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