I'm tired of being cheerful, brave, disabled, "wheelchair bound". gimpy, special and "deeply inspirational". When my friends say, "You're so strong, I don't know how you do it", I say to myself, "Neither do I, and sometimes I can't, and don't, but you don't see that."
cripple, helpless useless and lame. I'm tired of having a happy face when I hurt enough that when I am alone I howl like an animal from the pain. I am so, So Tired. I'm weary unto death of not knowing until I was 33 years old that not everyone's feet hurt terribly all the time! Brave and smiling through it all. Losing all my friends to AIDS, caring for them as they died, and being soothing and comforting to them outside while I raged inside at the government which did NOTHING! And then leading groups for people who were HIV+, and their families and friends, talking about how to grow together through this period of grief. Knowing that about every 200 years Nature just swallows up a million or so people with some damned thing or other. Watching it called first a gay disease, then a Haitian disease with the work sick with blame the victim thought. I'm tired of that too. Just tired.


I'm tired of surviving my childhood and adolescence with many ugly, abusive, and frightening times. And Smiling doghammit, through it all. I'm tired of having been a street rat so long ago, and never once getting a break, being exploited by people I thought were my friends and bartered away for a bag of dope. And dear god, Smiling through it all! I'm so, so tired. I have such well instilled manners that I have been polite to a police officer who wanted me to give him a blow job. I didn't do it, but by golly I was polite. "Will you please excuse me for declining your offer, but it makes me want to throw up all over your nice police car." Tell me about tired. I hate that when I fall I have to lie there until I can get myself up because: "If you need round the clock care it's the nursing home for you. Hiding my bruises isn't that hard when the only person who actually touches me is a massage therapist. That's the worst Part, being untouchable and untouched.

I'm tired of my father being dead, and my mother being dead, and my sister being dead. I'm especially pissed that Kenosha County, Wisconsin's Medical Examiner hasn't managed, in almost FIVE MONTHS to determine my little sister's CAUSE OF DEATH! And is still telling me, all these months later, in that same, cheery voice, "If you call back next Monday I'll have better news for you then" I could even live with am honest and sincere "We can't figure it out."

And I am weary unto death of wearing braces from the second I leave my bed to the moment I go back to bed. I am just really damned tired of it all. I am not looking for pity, nor comfort,not even kind, understanding words. I just want to say out loud that I am heartsick from smiling through the pain.

And what triggers this tonight? The government has decided that we crippled Medicare patients (I almost wrote victims) only need new braces ever three to six years. So if I need a new pair of braces before they think I need them, it is almost a thousand dollars a leg to get to walk my thirty steps in less pain.

Or I could get the cheaper ones, which only come up half as high, for about $475.00 per leg, which sounds suspiciously like a thousand dollars total.

I want the people who make these decisions to have my pain for one week. To have attendants wash their private parts because they need both hands and feet to stand up so it is possible to be cleaned. to reach for the pain medicine before doing anything else in the morning and waiting for it to work so I can get out of bed. I'm very, very tired.
I'm tired of doctors and even my family thinking I am a junkie because I need such serious medication for my pain. I didn't choose this! This happened to me I didn't do anything wrong! And I am sick to death of always being so poor I wonder if there will be money for fresh fruit or fresh vegetables this week but never both.

And clearly, if I am saying all this out loud, I am in desperate need of a pain pill, because my happy ass face has slipped off, so I will take a pain pill and get all straightened out before I come back to face you all again.

Comments:

My dear Starmouse, I came and read this immediately after we talked. It's an excellent post and anyone who is fortunate enough to be able to walk normally without pain ought to read it (including me). I love you very very much and I think you should NOT delete this. You are NOT a whiner; you are telling it like it is, Girlfriend, and people need to hear it. Love, Mossy.