Last summer I went to see HeWhoKnowsAllThingsAboutBikes (HWKA) for a fitting. I didn't like the way my new frame was feeling and asked him to take a look. As I wis sitting in the saddle, just pedaling away, he posed this question: "I don't know anything about (insert name of incurable illness here). Can you explain how it affects you?"
Dumbstruck, I smiled and, once I could utter something that sounded sort of like speech, I thanked him for being so direct. It's very rare that someone is. This doesn't mean I found it even a little bit appropriate, but I still appreciate the fact that he wanted to know the real deal instead of relying on he said/she said or filling in the blanks with intrawebz mumbo jumbo.
I went on to explain it to him in a matter of fact sort of way and, in the end, he talked to me about some related things and it was a good and meaningful discussion. No harm, no foul, but I'd be lying if I said my blood wasn't boiling at the thought that someone betrayed my trust and felt the need to share such private information of mine with him. I operate on a need to know basis. It doesn't affect him. It's not really any of his business. I don't train with him, so there's no chance I'm going to have to bail on him when my health is compromised, I don't have to rely on him for childcare or carpools... so in my book, he doesn't fall into the need to know category. Don't get me wrong. I *heart* HWKA and consider him my friend, but I have lots of friends whose friendships are such that it is simply a non-issue and, therefore, I treat it exactly that way.
My dearest friends understand that this is something I hold close because I never, ever want to be defined by a medical condition. It is an unwritten rule that if it is to be shared and discussed, I am the one making the disclosure and engaging in the dialog, for this is not something I want tossed around amongst the PTA moms in their hushed "how sad" tones, and I certainly don't want to hear rumors about myself amonsgst the people with whom I work. I am not naive, and I understand human nature, but I'm ever hopeful that the people in the outskirts of my world can respect me enough to rise above that, for I've seen firsthand that the ones who care most about me can.
I do not begrudge my disease. In fact, I am thankful for it. I know that sounds rather ridiculous and maybe even a little trite, but a long time ago I had to accept it as absolutely perfect. For in not doing so was to accept defeat and resign myself to a life of "what could have beens" instead of "what will bes". I had to learn to redefine "normal", and living with it has, in some respects, made me learn how to live. I am reminded on a daily basis that life is too short to be angry, petty or to harbor resentment. I'm reminded to love without limits, tell people how I feel, live without regrets, find my passion, and appreciate the little things in life. I do not get caught up in negativity, gossip or drama, for I have learned that when there is a limited amount of energy, wasting it on other people doesn't make any sense... not that it ever really does, but, sadly, many people don't understand that. Instead, I try to spend time every single day doing something for others, be it a planned act of volunteerism or a random act of kindness. I've learned never to take myself too seriously and that laughter is not only life's loveliest music, but also the greatest medicine there is.
My circumstances have made me a better friend than I might otherwise have been. My circle is my rock. They have taught me what unconditional really means. We can laugh and cry and finish one another's sentences all, seemingly, at once. I have earned two nicknames amongst these women. One is "Peanut"... as in no comments from the peanut gallery. I guess my condition has allowed me to break down some walls and say exactly what's on my mind. I earned that one when my friends realized that I was gonna call 'em out when they were f*cking up whether they liked it or not. They also call me "The Vault". I am the friend that you can trust with anything. I'll never tell. This is not always easy for me because Peanut wants to yell out RED FLAG! RED FLAG! in public sometimes, but The Vault never will... instead I'll save it for private moments such as "Can I get you a red flag? Erm... I mean some red wine?". It's pretty simple, really. I believe if someone tells you something in confidence, you keep it to yourself. If you read closely above, you may recall I don't do gossip or drama. I am fiercely protective of my family and friends. I want... need... them to be protective of me so that I am not at the center of soccer mom chit chat, so I'm not caught off guard while simply trying to get a bike fit, or so I can continue on with the success I've found in a profession that I never knew I would actually enjoy so much.
My point is this... I wouldn't wish my condition on anyone... but the lessons I've learned from it have been invaluable. I don't define myself by this single aspect of my being and I wish others would learn to be The Vault and appreciate my desire to live as normal a life as possible. I don't want to be labeled "the sick chick" and, while I want to inspire others, I want it to be because I write something that touches them, or because I do something admirable, not because my body wants to rebel against the SOP and it makes for good coffee talk. I guess it comes down to the fact that I know the me that is at my core, the me that has nothing to do with doctors and medicine, the me that others sometimes miss because they are so focused on giving an illness a life of it's own, the me that's... well, just cranky, sassy, silly ol' me.