The next 50 years

If I have so much value to the world, the world should help me live.  If I'm so damned special that my death is a tragedy, then reach out and help me have a life worth living.  Reach out to me and help me if I'm unable to thrive on my own. Encourage me to do more for myself, but not so you can move on, rather, because it gives me more courage and strength.  If I'm failing, don't slap me and shame me, but help dust me off and make sure I get what I need in spite of it.  Be there when I'm struggling.  Invite me when you're ready to play or to work, give me the opportunity to be there for you. You say the world would be a lesser place if I died.  You speak of the dead in ways that suggest you've lost something important.  But why then do you leave everyone around you to their own devices, helpless and solo, doing for themselves? If I'm supposed to give a damn about you, enough to listen to you when you talk about what you want to say, to click the lick o...

I like many women have an interest in stories about prisons, nuthouses, that sort of thing.  Orange is the New Black, for instance, is not only a great show, but plays to some of my "daymare" fantasies.  You know, you sit there imagining how you'd handle the experience if you got tossed in jail/prison.  Or other people imagine crashing on a tropical beach with a boat or plane and having to survive till rescued, like that "reality" series called "Survivor."  It's funny, I've had daymares about prison, many kinds of prison, about having to survive in a variety of wildernesses, all kinds of crazy possible disaster scenarios, excluding perhaps zombies. But I never, not once, ever, imagined spending a year in Cancer Land.  Never sat and thought of ways to handle it, or imagined how I'd carry myself, or what I'd do, or how sick I thought I'd get.  Never imagined it could take months or even years of rolling from one reason to feel like sh...

I got this radiation burn.  It started last week but by the weekend was acute and I brought it up on Monday.  They examined it and agreed it was acute, and I should spend the rest of the week healing. They gave me a prescription for Flamazine, a burn cream with silver oxide in it, or colloidal silver, I forget.  It's $65 bucks a tube, I remember that.  So I started slathering on a thick layer over the affected tissues and every time I peed, I rinsed with PH balanced water (that stings now for some reason?) and reapplied the salve.  I ran out in 36 hours or so.  Called for a refill, computer told me that it was too soon and would I like them to call my doctor?  I clicked a yes, and sent it on, and the computer said someone would call to discuss it later.  I waited all the next day, trying to get more creme out of the tube, worrying.  Ran out really bad late last night and couldn't sleep for the pain and frustration.  While I lay there suf...

I haven't written in here because I can't sit up at my desk and use my decent keyboard.  It hurts too much.  I've been going in weekday mornings for radiation and taking chemo pills 2x a day on those days.  Today they cancelled my treatments for a week because I have too much radiation burn on my groin.  My urethra, vagina, anus, and the skin thereabouts have what feels and acts like open road rash.  It doesn't heal over, it bleeds, and so forth.  Apparently I'm still doing remarkably well this far into treatment.  I don't have the references to know, but if it's so, that's likely the paleo diet. My sister is taking the summer to drive to the coast and back. She took a week to get here, then only had one day to spend, one day, two nights, an evening and a morning.  To see your dying sister you only made one day.  Yeah, and yet you want to pretend you love me, and never thought of me as lesser?  I know better, sister.  What you don'...

I was thinking about the other patients in the cancer center.  The various emotions on their faces.  It's a place where people  can't well hide their feelings, and probably don't feel the need to. We all know what's going on.  We all share the same feelings, in fact.  We're all facing humiliating and painful treatments against the face of death. We're all in pain or discomfort, fear and exhaustion, courage and terror.  We may be in only one or two of those feelings at a given time, and it changes as we progress through the experience.  For the first time in my life, I realize I'm part of a group and we actually share feelings alike.  Real feelings.  Not impressions or assumptions or ethics or morals, but actual emotions we hold. You can dispute how one might feel about a discussion about some questionable topic, but on the topic of having cancer, you all agree on how you feel. I finally found a club I can join.  Pity we're all too self ...

I'm seeing it, bearing down on me.  a freight train of stress.  I'm autistic, I can't do all these appointments, but there isn't any escape from them.  I mean, I get it, they're trying to save my life.  But they don't understand how fucked up it's going to make me.  Overwhelmed already, and it hasn't even gotten thick yet.  When I get overwhelmed, I get really emotional.  I can't understand people anymore.  I can't remember anything from one moment to the next, and can't think at a higher level than a moron. That's when the bullies always come out. People around me start deciding I'm deserving of cruelty.  I don't know exactly why, they're just resenting me, or disliking me, I don't know.  But yesterday it already started with a nurse.  I was getting a cat scan.  It was way over my ability to handle.  I'd been holding my pee in all day to comply with the demand to have a full bladder and it just had me so mentally inco...

Couldn't quit crying all night, now I'm numb and feeling black.  I just really don't feel motivated to live.  I just can't get past wondering if I'd be setting myself up for another fifty years of being lonely and bored and unwelcome. I keep hoping facebook will do something more than make words at me and show me I don't have to be lonely, bored, and unwelcome. I expect getting together the energy to go to events might help.  I don't know.  It's so uncomfortable anymore to try and interact in a crowd.  If I sit in a corner, I feel isolated.  If I try and drift into groups I am afraid they'll still quickly dissolve away from me like before.  I posted some of my art on facebook, thinking maybe some of the artists on there would mentor me and help me be an artist, not just someone who does art.  But I know how selfish the arts community has been, it seems unlikely.  I told Dan I need to see evidence that he's going to actively help make me a fut...