As the coming week is rare diseases awareness week, I sat down to write a blog post about it. And it was hard.
I enjoy spending awareness. I enjoy the simplest ways to help people understand not just me but others who live their life’s with diseases and illnesses.
I feel guilty for spending awareness because I feel like I’m talking about my diseases to much. I’m making it all about me and my diseases. Like that’s the only way I see myself. And others see me as.
I want people to see me for who I am as a weird human and friend, a child of God. Someone who loves her nieces and nephew a lot. Who has watched future man on Hulu through three times in a few weeks who rewatches movies and tv shows and reads writes, writes books, Who doesn’t like being in a room of more then 15 people but does it on a regular basis, who talks way to much after you get to know me, someone who crochets and knits and sews and paints and takes photos, who is sarcastic and funny, or who tells weird stories and laughs. Who smiles.
But I am all of those things but I’m also not well. I am dying. Slowly like all of us are.
And my daily life is overwhelmingly effected by my diseases. I can try and say they aren’t a big deal. To try and forget them. But when I forget that could kill me. If I try and forget that’s when mistakes are made. That’s how you miss medicines, or feedings or eat something Your allergic to. That’s when I have seizures because I looked at the police car with flashing lights as we pass it on the road. That’s when I fall down because I didn’t remember to pick up my left food like I should have, And so on…
It’s unforgettable but it’s unforgivable when you try to forget.
I want to know when is Awareness seem like attention seeking? When does Awareness seem like a plea for pity? When does Awareness become who you are? When does your Awareness become so guilty of all the things I asked above?
I don’t want pity. I don’t want attention. I don’t want people to only see my diseases.
I can sit somewhere talking to someone for ten minutes and afterwards and during I try hard to not talk about my diseases too much. Not talk about me too much and honestly not talk to much. I don’t want them to see me that way. I feel guilty when I do talk about them to much or just talk to much.
I’m wanting to say sorry for talking so much about me or my diseases, I want to say that I’m sorry for being sick and making things about me or making them uncomfortable
But my diseases have altered my life always. They effect everything.
Without them I wouldn’t watch tv shows through dozens of times.
Without them I wouldn’t have met some of my best friends and maybe just maybe I would have met a few of them but our friendship wouldn’t be one of understandings like they are.
Without them I wouldn’t be living in Beaufort North Carolina.
Without them I wouldn’t have been able to be as big of a movie buff.
Without them I wouldn’t want to help people understand other people better in ways that I could truly relate too.
Without them I wouldn’t be the same Shayweasel I am today.
Without them I wouldn’t have a small Noodle Doodle the Tiny Poodle.
Without them this joy I have. This beautifully odd happiness I find in the smallest things that I find there because of the struggles of life have showed me how to love the little things. Wouldn’t be the same.
I have guilt of Awareness because I want people to be aware of all the other things I am. And all the diseases that effect my life.
I am guilty of being aware of rare diseases.
And I’m not sorry. But I do apologize for the weight you might feel when reading about awarenesses of Rare diseases, or cancers, or mental health, or addictions, or whatever it might be that the awareness days weeks months that we have so many of. Because the weight the reality the harshness is heavy.
I’m aware I might talk to much about myself and rare diseases. But ask me about other things. Try and understand how I live with rare diseases that effect everyone. That I’m more then someone who has rare diseases. That I want to be aware of you. Of all the things that make you. I’ll listen and I’ll be aware.
I have guilt of Awareness. But I’m learning to not to feel guilty about it. But not to much about it.
But I still am always open for any questions, any time any day! I don’t mind ever being asked about my health. About my life.
Shayweasels biggest thing she is guilty of is being sarcastically honest and speaking my mind and being more beautifully fantastically then most also that makes me totally humble right?
(Sarcasm goes here.)