Wednesday, September 14, 2016

Catching Up: CP & Beaches, and Dealing With Missing Out

Where to begin...I've had a pretty busy couple of weeks (at least compared to the rest of the summer!), and I've been meaning to come here and write.

BLOG-RELATED THINGS:

I've been working on a blog post that explains some of the neuroscience behind CP, and I am really excited to publish that here soon!! I've received more emails than I can count asking about startle reflex as it relates to CP...and YES - I jump at everything, too!! ;) (I smile to myself every time somebody writes to me with that question, because you guys are MY PEOPLE - we "get" each other!) I will be including what I've been able to work out about the CP startle response in this upcoming post, and I will address several other CP/neuroscience topics as well. I've just been delaying publishing it mainly because I want to include illustrations for some of the explanations, and my drawing skills leave something to be desired!

(Side note...If you've sent me an email and I haven't replied yet - I'm sorry!! It's not you, it's 110 percent ME! I absolutely LOVE getting mail from you guys, and I will reply, I promise! And if you're here reading this now, even though it's been a couple of weeks since my last post - THANK YOU! :) I'm honored that you continue to come here and care about what I've got to say in my little corner of the blogosphere, and I hope that my words have helped you in some way.)

ADULTING THINGS / BEACHES / ETC:

In the realm of reality/adulting, I've been busy trying to work out career-related details, now that my leg has healed enough (CP complicates my career planning a bit, in case you were wondering...but "complicated" doesn't mean "impossible," and I'm not going to let it stop me!). I've also been studying for the GRE (an exam for graduate school) and tutoring an eleventh grader most afternoons and evenings. I don't want to think about adulting right now soooo I am making an executive decision to abruptly change the subject:

The weekend before last, my mom, my brother, my brother's (girl)friend, and I all went to my uncle's house on the beach for a party! His last get-together had occurred in early July, the weekend after my surgery...and a few days before my surgery, I'd overheard my mom talking on the phone, telling her sister that we wouldn't be able to go because she needed to take care of me. This hit me hard...because the beach is like my mom's Holy Land, especially when her siblings are there, too, and I hated being the reason that she couldn't go. I felt like such a burden...and I tried to convince her to go without me, but she refused and insisted that she wasn't that sad about not going. ANYWAY - needless to say, I was really excited that she could go this time around, and I was looking forward to tagging along as well.

I have a love-hate relationship with the beach. Okay - it's mostly LOVE, but beach trips always seem to emphasize my CP, and that can be tough. My brother and his (girl)friend (let's call her Rachel) were always willing to offer me a hand when needed, but oftentimes it's hard for me to ask for help...I still feel awkward asking my brother if I can hold his hand for balance, and asking Rachel is even harder, even though we've known each other for about four years. Still, when my options are 1) ask for help or 2) fall flat on my face, I've been learning to lean towards option 1 in most situations.

Most of the time, even if no one's around to help, I can find ways to adapt and make it work. For example, when we were all going to go swimming in the ocean, my mom, aunt, brother, and Rachel all ran in effortlessly. I wanted to follow but I wasn't sure how; the waves were nearly non-existent at this point but even with the still waters, I knew I'd probably lose my balance if I tried to wade in with no support. I was unsure what to do for a moment, but then I spotted a boogie board! I placed it in front of me in the water and used it kind of like a crutch, leaning my hands on it for balance - and it worked!

The stairs to the beach
(photo credit goes to my aunt! I held onto the railing like my life
depended on it whenever I traversed these stairs ;))
I think the hardest moment (CP-wise) for me that weekend was later that night, though. It was about 11 pm and my mom and my aunt had just walked down the steps to the beach, where they saw the fish jumping in the water, illuminated by the moonlight. They came back and told my brother, Rachel, and me: "You've got to go see it...it's like a once-in-a-lifetime experience! It's incredible, go look." A few minutes later, we were about to go outside and see, when my mom called to me from upstairs, "You need to stay behind...it's really dark out there and I don't want you to fall on the stairs and get hurt."

I knew she was right...I knew she was being the voice of reason...but still, it stung. I didn't care so much about missing the actual experience...I was more hurt by the realization that I was missing out because of CP.  It reminded me of when I was nine years old, and my brothers and two of our friends were going to see Spy Kids 3 at the movie theater...I wasn't even that interested in the movie, but I couldn't go because I had a physical therapy appointment, and so all of a sudden, missing that movie felt like a Big Deal.

I think I will always have to deal with that hurt from time to time, and it might not get any easier, but as I climbed into bed that night, I decided to focus on what I could join in on. I had an awesome time despite that hard moment, and I swam in the ocean to my heart's content (my favorite part!)!

Next up: my best friends from home flew back here for a few days, and we had an amazing time reuniting. :) CP always keeps things interesting though......I've got a story that I'd like to share here, but I'll save it for next time!

P.S. Here's a photo from a few days ago; one of my collie's favorite hobbies is tug-of-war...sometimes she climbs on me while we play and it makes me smile. :)


8 comments:

  1. Ohhh it sounds like in spite of the occasional sadness, you've been having a GORGEOUS time this summer (I'm looking forward to learning what a startle reflex is) and I'm so SO pleased you got to go to the beach. The beach is one of my favourite places and I don't get there nearly often enough. Especially not to swim, as it's rarely warm enough here for all but the most hot-bodied (and I'm a cold soul). HOORAY FOR YOU!

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    1. Thank you, Lizzi!! This summer definitely had its ups and downs, but this was a highlight. :) Wow - I had no idea that the ocean in England tends to be colder...I'd love to visit a beach where you are sometime (although I'd say I err towards being a cold soul, too ;)).

      <3

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  2. Missing out is so much a big deal because you hear someone saying ONCE IN A LIFETIME YOU HAVE TO SEE IT and then, BUT YOU NEED TO STAY BEHIND. Like, Mom, Bro, GF, give K a hand so she can have the once in a lifetime experience, too. Seriously, getting left out so obviously is so painful. It's good to focus on the good parts, but it doesn't make the bad parts sting any less... :( <3

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    1. Tonia <3 Thank you for getting it. I understand *why* I had to stay behind (safety first), but you're right - it definitely stung a bit.

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  3. Hi K! Nice to see a new post from you! I know it's hard to get left out(getting pulled out of class for IEP mandated PT was humiliating for me in grade school) but I have to wonder if your mother's concern was less about CP directly and more "K just had surgery and I don't want her to re injure the bone". In my circle when one of us gets injured the others say things like "you should rest instead" regardless of whether the person is disabled or not. Job hunting is particularly hard these days,but I know you will figure it out! Good luck on the GRE! Is the GRE taken in most states?? I really look forward to the neuroscience post and the friend story!! I'll be in touch!

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    1. Hi Margot! I actually talked with my mom about it later, and it was CP-centered concern rather than post-surgery concern...but you're right in thinking that surgery would complicate the situation! I think it was the right choice to stay behind -- it just hurt a little, you know?

      The GRE is required by many graduate schools, so I am taking it because it will widen the range of schools that I will be able to apply to, but not every school requires it! It's kind of like the graduate school version of the SAT, if that makes sense.

      Thank you for staying in touch! I love hearing from you.

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    2. Ah I see. Yes I understand. It always hurts when the CP stops us from doing an activity we like or want to do. If it was CP related I am a bit puzzled they just had you stay instead of helping you out more but it is what it is. Good luck on the GRE! You're welcome! I will be staying in touch.

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  4. Hi, I am a mum of a 7 year old boy (light of my life). I thought I accepted and understood his condition, but recently attended an appointment and have never felt so confused and am hoping some one can help. My son has permanent brain damage and effected his lower body severely he can not walk or stand with equipment, his upper body strength isn't to good, his hands and arm are pretty weak but not to bad. My son is extremely stiff and has pretty bad diatonic movement out consultant from birth and the whole developmental team have said there is no treatment to help him improve with day to day life, and have given us just pain relief to help with the new pain that has just began. 2 days ago we were seen by a team in st Thomas hospital and was shocked to learn that the actual care plan that my son was given by his current consultant is the actual cause of his pain, the new team have suggested seeing a orthopaedic surgeon to have tissue removed from his hamstrings, to help with the muscle shortening that he has.
    so One day I went on line to the Internet to know more clue about the cp Virus i came across a review of a lady saying that she got her cp Virus cured by A great herbal spell caster Called Dr.lewishill which gives a permanent relief to cp symptoms and cures it. Lord know i needed help so i got the medicine and used it, that was when i met a breakthrough and my son is perfectly okay now and i sleep calm without any stress now. You too can get cured just contact him on (drlewishill247@gmail. com) for advise and how to get the medicine. Thanks

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