Dear Bones,

When I was younger I didn't hear or know about the '-ed' at the end of your official description "bowed." Instead I thought that my bones were like bows for an embarrassing number of years. I thought they were powerful enough to launch arrows from like Robin Hood did. And I thought they were like accessories that my mom sometimes would put in my hair; I thought they were like those bows: girly, cute, an extra detail to add on to complete the look. But if I tried to pull you back taut for an arrow you would only break. And "cute" after about age 12 becomes "weird," "abnormal," and "deformed."

The first time I remember singing anything joyful about you was when we sang that "bones song" in the fourth or fifth grade.
"The knee bone connected to the thigh bone,
the thigh bone connected to the back bone.." 
And I remember thinking that this song was totally wrong because those parts of you are actually called patella, femur, vertebrae. I think I grew up a little bit that day. I felt special because I was in on some secret that those other kids in my class didn't know about yet. Like when I watched my younger brother play with Thomas the Tank Engine toys and he hadn't realized that real trains don't actually talk, real trains don't really have faces that are friendly and rosy cheeked. But I kept my mouth shut because he was having so much fun playing with his trains, I kept quiet about your actual terms because my classmates were having fun doing all the motions of the song.

I didn't really know you as "fragile, bowed, weak, brittle.." at first. At first I probably just knew you as something that hurt, and so I screamed and cried often as a baby. Then I got to know you as something that other people could make feel better. Not long after I figured out your soft spots, and weaknesses - I learned to make you feel better on my own. Then you became the thing that I had to keep in mind, or at least try to as I grew my mind and tried other things. Finally, today, you are often the thing that I know best about myself. Sometimes this last fact is the most frustrating part of my day, and other times it is the thing that saves the day. Because why should you be the best thing I know about me? Why can't the best thing I know about me be what I'm going to do when I grow-up? Or what my dream wedding will look like? Or exactly what kind of exfoliant and then moisturizer to use on my skin? Maybe I don't want to know you! Maybe I don't want to know about the crack I am ignoring, the bruise on you I could care less about, and the old break that still hasn't healed yet. Maybe I just want you to lay underneath the tapestry of veins, muscles, and skin as chipmunks lay beneath a winter's snow. Maybe I just want you to exist like that, and move about when the time is right as seasons turn from cold to warm. Those are all childish and maybe even useless thoughts to consider, but they remain notions I have thought at least a hundred times. And if you have broken - needlessly, randomly, inexplicably - a couple hundred times, I feel justified in telling you my equally random, and inexplicable thoughts too.

These will be added to our other secrets that we have shared. Remember the time when right after coming home from getting our orthotic KFO braces, we were excited to start walking again and somehow felt the sudden sharp nip of a small crack? It was against the outside of the tibia/fibula, and I knelt down - quiet and alone in the kitchen until the sensation faded. For about two months everyone was shocked I wore those braces without complaint, tightly strapping down the velcro against my shin. There is a grinding sensation that happens against shoulder blades when in a tense moment I shrug in silence. The left knee locks unexpectedly and I jerk in public at the shock, and I am bartering with you: okay if you just slip back in your socket I promise to not crack my knuckles so much today, whatever you want I'll do it. Just please don't break! There were other weird tiny incidents, moments when we both knew that rather than drag mom or dad to the hospital to spend hours on the orthopedic floor - we would just deal. You let me know what matters and what doesn't. What is urgent and what is not, though to be truthful my stubbornness sometimes pushes your buttons and you glare at me from beneath the x-ray's light table. We will have our disagreements and then tell our friends and family "we're just going through a rough patch."
Our secrets are things that no one will 'get' no matter how closely they study the genes, the sources, or trace the family hereditary footprints of your fragility. They are not things I will ever tell my orthopedic doctor about, even if he gave you a name and prognosis. And as much as I would rather not know about all of your strange quirks and abnormal deformities, would rather look away from the strange twisted spiral of ribs mashing into spine on the x-ray, our time together has forced me to become close with discomforts. The friction of that feeling isn't what makes you fragile, and it's not what makes me any stronger or capable of a person - I think it just serves as a reminder that trying to flee from ourselves is what induces the biggest fracture of them all.

Yours forever,
Sandy

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7 Responses to Dear Bones,

  1. Your writing.....is amazing!

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    1. This comment made my week, and still does! Thank you :-)

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  2. These words have a healing power....It is an amazing feeling to read such an intimate view into how I experience parts of myself that I also share with almost no one.

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  3. Thanks Kara for your comment! I think you might be interested in reading more such thoughts/letters here: http://letterstothrive.tumblr.com/

    (pssttt.. feel free to submit your own letter too on that tumblr if you'd like!!)

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  4. This is one of the best things I have read...

    I have a painfully hard time even explaining to my dad, who has had his wrists broken since he was 16 (They never healed).

    As you probably know, sometimes sonic vibrations can cause bone pain (well at least it does to me). Well, I was at the dentist last week, and the Ultra-sonic Scraper hurt my neck! My dad thought "Oh, do you need a pillow?". Well, it took me a while, in pain to describe him the feeling in my neck.

    What I am trying to get at, is that I have had a hard time describing what has been happening inside of me, which has made it really hard to have friends that truly can understand the days when I am one of the grumpiest people on the face of the earth. Even though they could not easily understand the fact in which I always have some form of pain everyday, they at least know how to comfort me.

    But thank you for your lovely article, I smiled the entire time I read it.

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    1. Adam, I really appreciate your comment. It was a timely reminder to why I started blogging to begin with. I'm glad that my ramblings were able to bring a smile to you. And on the days that you are grumpy, screw'em! Be grumpy to the grumpiest, grump it all out! Because the other thing I believe in is that life's too short for subtle.
      Best,
      Sandy

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    2. I can actually relate to this post even more than originally stated.

      I have always thought of myself as different from others. My elementary school had "awards" at the end of the year. One of them was for perfect attendance. Well, let's just say that I never had a chance of getting that.

      But I have also secluded myself from others over the years, but a good friend of mine, who is a lot older than me, but not exactly wiser (I am 18, he is 45-ish) has helped me come out of my shell, which helped me at school. I always thank him for it though.

      Like you, I have definitely had my share of time in the hospital, and even had more time away from the hospital in pain from un-treatable breaks (Ribs).

      So, now I am not exactly the most sociable person (which is shown by my last comment) but I think I have a slight reason, which not very many people that don't have OI can understand.

      So, once again, I thank you for the lovely article.

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