Today the pill cam nurse told me that when she had lymphoma her husband stuck by her (a mercy) but her friends and even the other nurses though that perhaps she was using her sickness for attention. OHMYGOD- HOW MANY TIMES HAVE I HEARD THIS!!!
I'm fucking hilarious - I'm brilliant - I'm an attention whore - I can get attention on stage - with my writing - and in the classroom -- I DON'T NEED DISEASES TO GET ATTENTION. And besides - diseases are the ONE WAY TO MAKE PEOPLE GO AWAY. They don't get you attention they get you IGNORED- SHUNNED. It's so fucked up.
So - here's the deal..
This nurse, "Dot" told me that when she had cancer most people just said NOTHING to her because they didn't know what to say. And she just ignored them ignoring her - she just went on with her life. And when she went into remission they kept ignoring her and she kept ignoring them and she's become a solitary woman because of it - with just her husband and what life she's made. And I welled up tears - OF ANGER FOR HER.
And she told me she was VERY BITTER for a VERY LONG TIME over it. And I said "yes of course - of course you were" - I"m angry for you now." And she brought back tissues and I blew my nose and we hugged. And I said, "I'm so angry that people judged your illness as having to do with a choice that you had or didn't have. I'm sorry that people ignored you. I'm SO ANGRY ON YOUR BEHALF.
And she told me that she hated it when people would say that "God won't give you anything that you can't handle but those were always the healthy people." And I said, "Yes- I KNOW- always the healthy people who have NO IDEA what you're going through - they want to use their vapid clueless ideas and their little sayings but they don't want to GET TO KNOW YOU or feel you OR BE CLOSE TO YOU. They don't want to CARE about you."
And I was even more upset and raw. And she said that she was very bitter for a long time for that too. And I told her that I was still going through this - where I have my sick friends and my healthy friends - and I have to decide each day- which friends I decide to share with -- and I have my friends in the middle, my "care taker friends" who are not "sick" but they have been there with the sick and dying and so they KNOW what it is like to be on the outside - and so I afford them more trust than I would others... and how I am trying to be more LOUD and VOCAL because in my heart I am a teacher. And how I am trying to teach people that it is OK TO HAVE COMPASSION.
I even tell my surgeon - "close your eyes and imagine that I am your wife your mother your daughter- your advice makes a difference now, doesn't it"... and he said, "yes- it does." I'm trying to have compassion for my healthy friends- but still TAKE THE TIME TO GET THEM TO KNOW ME.
My brother - who has stopped calling me - stopped TALKING TO ME. He treats me now like an outcast- like his mother in law - like someone who no longer has a brain or a LIFE -- I am now just "the sick" - someone who doesn't need to be TALKED TO AND TALKED WITH -but "handled." He might spend a month fixing up a room for me - but I haven't TALKED WITH HIM FOR SIX MONTHS. It is as though I am now invisible.
And I realize that it is because to him - I have become that space where we relegate sick people -- annoyances - scary- we put them someplace where they do not pollute us... and I am trying so hard to go there and have compassion for my sick friends and LOVE THEM and give them what they want... and I am trying to go to my healthy friends and educate them too -- NO - I WILL BE SICK IN YOUR FUCKING FACE AND I DON'T OWE YOU SILENCE OR YOUR PREFERRED WAY OF BEING.
I don't know how else to do it. And I'm afraid a great deal. And I'm alone. And I hate this. And I don't like my life. And I TRY to live in gratitude and I do the very best I know how. And I'm living with the best amount amount of self-advocate and self-love I know how. I am doing my best.
I guess this is my job. Period. While I am here on this planet I am supposed to live the best I know how -full of love and with full on emotion. If a nurse makes me cry on her behalf - I cry. If someone makes me happy - I laugh. I will LIVE THIS LIFE - FULLY. HERE. PRESENT. This is my job.
I am living in it.