11 March 2008
Is it any wonder that I fail to trust in the good things happening to me, when each time a tiny tendril of goodness peeks out from the shade, it is brutally crushed by some cruel bastard’s big boot?
My friend comes to visit, I find out I have friends on the Internet, all of which brings me joy. And then that joy is ripped away by more of the same, tired, old, pettiness, meanness, lack of compassion, whatever – those things that stymie me in my sad and futile pursuit of happiness.
Of course, it is the medical profession yet again.
The rheumatologist brought up the idea of the once-a-year infusion for my osteoporosis, and won’t even look at another diagnosis or treatment without dealing with the osteoporosis first. I am ecstatic; I cry tears of happiness.
And then the bomb drops.
The woman from his office calls after checking with the insurance company. She doesn’t sound as if she is very sure what she means, but nonetheless, it still breaks down to the fact that the insurance wants to cover probably none of it, but will cover only a portion. And this fifteen-minute IV costs $3500!!!! If what she said is correct, I would be responsible for 80% of that amount. Right now, I have $4 to my name. I guess I am supposed to just be what I am – poor. And being poor, I should just go on ahead and let my bones grow brittle and my spine collapse in on itself, and wait until I fall down and break a hip and am never able to completely recover.
I never think of myself as bitter, but I suppose I am becoming bitter. I think of myself as being kicked around by the world a lot, yet having a child within that always dares to dream and hope, no matter what, and who crawls out of the gutter each time she is kicked there, still dreaming that something, somehow, will go right.
I should know better.
The next little earthquake hits. Or should I say snowstorm, trapped within the worst one in 150 years, the television tells me.
My gynecologist won’t answer my questions about my surgery unless I make an appointment and pay her $20.
Again, I have $4 to my name.
I do not understand what is going on. I talk to her nurse, and pick up that the doctor is pissed off at me, for some reason, and does not wish to deal with me. I don’t even know what I did wrong. And maybe I did nothing wrong. But I do not know what the problem is. And I can’t go see her. I don’t have the money. And how am I supposed to make this terrible decision about this surgery if I can’t get answers from my doctor? I am spinning with the insanity of all this.
She doesn’t even want to give any more information to the doctor my online friend works for. Is she upset I asked for a second opinion? She told me it was fine to get a second opinion. Is the world crazy here, or am I?
The nurse decides to try this: she will fax the doctor’s handwritten notes to the other gynecologist, and I will send S. my list of questions, and we will go from there. Meanwhile, I am not getting any better, and I feel stuck in some kind of limbo where the poor are forced to live.
I didn’t choose to be poor. I wasn’t raised poor. I wasn’t raised wealthy; my family was lower-middle-class, with a small house and a mortgage, Father doing all the work and Mother being the housewife. You know – traditional. Until my father left my mother, and she had to try to survive on the portion of his income he chose to give her. Kind of like my situation now. I guess history does repeat itself.
And so I am in poverty. And ill. And unable to get the help I need.
But I am given options, and programs, and phone numbers, and forms to fill out, and I stare at them and cry, too depressed to risk one more rejection today. I will wait until tomorrow, and try just one – only one – possibility. I can’t take more “Sorry, we can’t help” or “This program won’t cover that; try this one” or “Sorry, you’re just shit out of luck, lady.”
And then another bomb drops.
Emotionally, I am a wreck. Financially, I am worse than a wreck. One thing I will not give up (besides my cats) is my computer connection. It is my lifeline to the world, my library, my support, my avenue of friends, my entertainment, my education, my helpline for medical and job possibilities – and so much more.
My support. I need support. I know I have some, but my friends, online and off, don’t have what I do, don’t face what I face, can’t really understand the terror and the horror and the idea of mutilation that rings so loudly in my head. I need others who have what I do, who understand.
But there are no chats for anyone with VIN – not that I can find, at least. There is a cancer support chat, though, and I am hopeful I can find knowledgeable and supportive new friends there.
I should have known better. I have rarely had much luck in chat rooms. I seem to most often end up in situations that range from dangerous to crazy in chat rooms. Yet I have also had some wonderful experiences, and made some dear friends in chat rooms as well. And how could a roomful of folks with cancer/cancer concerns possibly be bad?
Beyond bad. Nasty. Horrible. Insensitive. Juvenile. Unbelievable.
I go slow, try to introduce myself after awhile and listen. Not much is being said, but that is not unusual in chat rooms. (I can’t tell you how many times I have been in chat rooms where 90% of the conversation is “Where ya from?” and “Hi” or “Bye”.) I tentatively start to talk about my problem. Questions are asked, and I make the mistake of believing it is because they care and understand.
They don’t. The more I try to explain what is going on and my fears and feelings, the more they jump on me. It is likely being in a dark alley and having a group of thugs jump you for the fun of it. They don’t want your wallet; they just enjoy hurting people.
Even worse, there is voice chat attached and I can hear these peoples’ horrible comments to me. They can’t hear me, but I am sobbing. By the time I hear one woman say “I don’t even believe what you’re saying is true,” I am sobbing so hard I can’t breathe. I log off, and sit in my chair, feeling like this world is the cruelest place, and wondering why I am here.
Sometimes I think I shouldn’t be here. Sometimes I think I took a wrong turn on some other plane of existence and ended up in Hell. Sometimes, I just want to be dead. It isn’t really death I seek; it’s the end of pain I wish for. The end of the voices of those who torment me for laughs, just as they did in high school; the end of the pain those who have burglarized and raped me caused; the end of the pain of abandonment; the end of the pain of being 52, broke, alone, with COPD and a precancerous condition that some sick person in a chat room doesn’t even believe I have. I wish they were right; I wish I didn’t have it.
And I wish the world was kinder and less cruel.
nice work, man