The big poem, and discussing my MS… (blog update)

12066001_10204763620601817_1907840271951987515_nThat’s me in the pic btw. Hi.

In a few hours, after I attempt to sleep (4AM where I am… Oh Lord) I am going to try to put together a big piece I wrote. It comes in three different parts. 3! I rarely write a poem with separate parts. For each one I need to write it here. And record it for YouTube which involves me looking halfway presentable and editing of the video. I’m going to do each transcript and video separate but present it all in one post.

I’m afraid.

I’m tired.

I’m burnt out.

I hate holidays. They remind me of my childhood. Lots of bad memories. And, holidays force me to see people who think they know me. They don’t know me. They know nothing about me. I see them for Christmas, perhaps a birthday, and Thanksgiving. I have to pretend to know them. I don’t like pretending. I’m a great actress, but hate to act.

My eyes hurt really bad. Maybe it’s from the stress or MS.

12249796_10204758555995205_1323580806153272033_n
My chemo necklace.

I have this thing from MS (multiple sclerosis) that makes my eyes ache. They fucking ache. And my whole body hurts all over. There’s nothing I can do about it. Pills and pills and pills. I’m tired of pills. I’m tired of forgetting my cat’s name. I’m tired of feeling weak and getting weeks of partial paralysis. MS sucks. And the treatments suck.

I need to go for more scans but I’m putting it off because I’m tired of bad news. I don’t like my trajectory. I rather be left alone and not be picked and prodded. I rather try to sleep.

I wish I could sleep it away.

I can’t.

 

Can you see my frustration?

Can you see why my work is quite sad?

I hurt all the damn time.

I need to play pretend with people who don’t know me on holidays.

I’m a great actress, but I hate to act.

 


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