Cries & Whispers

6 May 2008

I didn’t.

Of course I didn’t. That bit of strength within me has been swallowed up by massive emotional beasts of fear, terror, anxiety, anger, hurt, pain, humiliation and sorrow. I cannot seem to deal with any of this without breaking down in tears, and sometimes, it frustrates me.

I am a cryer. I have always been a cryer. I burst into tears at any moment for any reason, and that has always been the case. I watch TV news, and I cry over someone else’s house burning down, I cry over the police officer who was shot, I cry about the child who died in the accident. I don’ t even know these people, but I cry for them anyway.

Of course I cry at sad movies. For some reason, I have never cried at weddings (that I recall); I guess I just don’t emotional about people getting married; it’s a nice thing, it’s a good thing, it’s a happy thing – why cry? I haven’t been to too many funerals, but I don’t cry too much at them, either. Maybe I am just too numb; maybe my funeral experiences have just been too strange (and they have, belive me), maybe it’s just so expected to cry at funerals that something within me says “Naw – not gonna do the expected.” It doesn’t mean I don’t cry later. I do. I once seared myself into a neighbor lady’s mind as utterly bonkers by crying and sobbing on my back porch at 3 am over my mother’s death. It was loud enough for her to hear me and come out and give me that “Linda Look”, which translated as “What the f*ck do you think you’re doing, you moron?” Once she found out, she softened, but a Linda Look stays with you for awhile.

I cry if someone looks at me wrong. I cry if I can’t find the right cat food in the grocery store. I cry over things that happened 40 years ago. I cry over things that happened in the country 40 years ago that had nothing to do with me personally.

Sure, as I get older, I cry a little less. I don’t care so much if someone looks at me wrong; it probably has nothing to do with me, anyway, since the truth is that I am not the center of everyone else’s universe; that person is probably thinking about something to do with his or her own life when s/he happens to look at me weird. So, okay, I don’t really do that anymore. The rest of it, I still do.

With all the tears that have poured from me lately, it astonishes me that there are any left. But there are.

They came today, much as I tried to stay rational, calm and assertive as I called my doctor’s assistant. I had her card, and I couldn’t for the life of me remember who she was, other than someone connected with the gyno-onco. I couldn’t remember what she said or did when I was there. My mind is trying to blank out a lot of this terror, and doing a damn fine job of it.

I asked her who she was and what she did. I suppose she was offended, because when I then started to ask her about arranging to not have any student observers there for my surgery, she cut me off with a cold “You and Dr. C. already discussed this.” Now I’m crying again, just typing that. I tried again, pleading that I could not have student observers there; I’m a rape survivor. For heaven’s sake, can’t they understand this? Apparently not, because she then suggested perhaps I may want to see another doctor instead.

I was shocked. I was shaking. Another doctor? Another exam? Waiting who knows how much longer for this to be over?

The tears poured. “But – that – would – mean – another exam – and – I – can’t – keep – waiting for this!”

Okay. Next question. I am getting nowhere but halfway to hysterical.

I try to tackle another question, about the pre-op test results.

“We already talked about that,” she snaps.

My Goddess, what in the world is going on here? Do these people hate me because I don’t want observers staring at my completely exposed tender flesh as it is being brutally cut away forever? Do they not understand an iota of what I feel? Do they not care?

Apparently not. I tried again, with another issue.

I want copies of everything. I always try to get copies of everything when I can. They have a department that does nothing but copy CDs of MRIs and X-rays and the like. I always ask for them. Of course, I tell them they are for my doctor, but he doesn’t care about them. I do. I want my own medical records. They are mine, they belong to me, and I want them.

I had asked the anesthesiologist for a copy of the notes from my colonoscopy doctor, and he refused. Utterly refused. Like he couldn’t just run off a quick copy from the computer while I was there? No, I have to go to another office and request my records. For which I am sure they charge. I don’t have money to take a damn bus right now. I sure as hell don’t have money for copying charges.

“We gave you the copy of your consent form. I don’t know what else you are talking about,” she snapped.

Well, how about the copies of the blood test results, the EKG, the several forms I signed, not just one? I didn’t bother asking.

Okay, let’s try one more question. I thought they had told me the surgery wasn’t set for that date. She assured me I was wrong (well, it was pretty obvious by now that she thought I was wrong about everything); it was the time that would not be set until the day before. Okay, fine, no problem.

Problem.

I ask if I can request that it be scheduled in the afternoon. “No. We don’t do surgeries in the afternoon.” Sigh. Okay. “Can it be scheduled as late in the morning as possible?” “No.” (I am getting tired of hearing the word “no”. I don’t like hearing the word “no.” It pisses me off hearing the word “no”, especially over and over again in the same conversation.) “The minor surgeries get done first” (minor? Is she out of her mind? To me it is beyond major, and to call it minor is an insult. Fine, I will allow that that is the way they look at it, but her snapping tone offends me by calling it “minor”). Mine will be scheduled between 7 and 9:30 am.

I point out that I am not a morning person, and that my body is at its worst in the morning. I point it out twice, just to be sure she understands the implication of this. It will be a harder surgery, I will have a harder recovery, and it will be on their heads. I do not threaten; I merely state that my body is weak at that time of day. They should be able to figure out the rest.

By the time she is done shredding what little strength and dignity I thought I had today, I am a weeping mass of human being. Nothing is going right, and no one is listening to me.

Tears again. Stop it, damn it! I can’t even write about tears without the tears flowing.

I don’t know who to call, but I am calling someone. I stare at the phone book, the huge listings for the medical center, and I have no idea who to call, and no one is going to give me any help to tell me who to call. So I call the generic number.

A few numbers later, crying through each and every person, I am speaking with J., who has something to do with women and children and the hospital. I am too upset to get it clear. But she has a gentle voice, but strong, and she speaks to me softly as she asks me a few questions after hearing me out. She says she will speak to Dr. C. (the gyno-onco) about my concerns. I have little faith that this will get me anywhere other than dropped from his patient list, leaving me where I was a month ago, and forcing me through yet another exam, another scheduling, more weeks of extreme anxiety. But I do not know what else to do, so I give her my permission to speak with him. She says she will also talk to the nursing staff over there and see if they can help me. I ask her if she understands why I am so upset about this, and she tells me she does. The validation helps.

So I ask her about the intubation. She falters on that one, and I don’t push it. One thing at a time. I will deal with that later.

Her gentle voice ends the conversation as I thank her.

I do not know what help she may be. I do not know if Dr. C. will get angry, and dump me, or take his anger out on me during the surgery; a thought which terrifies me. I do not know what to do.

I am still crying.

There is something strange about the tears I shed these days. They feel different from the tears of the past. They taste different. They feel more real. They feel very, very deep. Sometimes, these dark days, they whisper me to sleep.

Power

30 April 2008

I can’t stop trembling. I can’t stop crying. Everywhere I go, everyone I talk to, gets five minutes of peace before I break down.

Today was my pre-operative nightmare. I was handled by so many people I feel like I have disappeared. That is the way they make you feel: as though you, as a human being, do not exist.

They wanted my temperature. They wanted my blood pressure. They wanted my blood. They wanted to hear my lungs. They wanted to hear my heart. They wanted to radiate my chest yet again (how much radiation from x-rays does it take before you get cancer because you’ve had so many x-rays?). They wanted my history, several times. They wanted my allergies, several times. They wanted specific details on every time I was under anesthesia and what happened.

What happens to me under anesthesia? I never know. Sometimes, I am fine and silly. Sometimes I am waking up under it to a nightmare. Sometimes, I wake up fine except that I feel deathly ill.

The anesthesiologist tells me the “twilight state” thing they have done for my colonoscopy and some of my dental surgery is not anesthesia. Okay. I don’t see the difference. They both put me to sleep, in terms of my brain at least. It sure seems like anesthesia to me.

The first time I had anesthesia, I was five. Back then, it was routine to take out perfectly healthy tonsils of very young children. I do not know why; it makes no sense to me. However, mine were far from perfectly healthy. My tonsils and adenoids were so infected and swollen that I was going deaf. Something had to be done. I was five years old.

I had bad postnasal drip. They didn’t count on that. I woke up during the tonsillectomy, a terrified five-year-old. I couldn’t see, because there was a sheet over part of my face. I could see the bright light behind it, though. I could hear my doctors talking, the ENT and my regular doctor and another I didn’t know. I could feel pain and burning and a scraping feeling in my throat. I tried to talk, and I couldn’t. They realized what was going on, and said “Uh-oh, she’s waking up.” Suddenly, I was asleep again.

When I awoke, all the other children that had been with me at the beginning were gone, home in their nice warm beds, home with their parents and dolls and television shows, home in comfort and safety. I was alone. And worse, they wanted to keep me overnight for observation. I wasn’t bouncing back like I should. I couldn’t keep anything down. I was sick and miserable. But I knew one thing: I was absolutely not going to stay in that hospital. I knew, in my five-year-old mind, that if I did, I would die.

I don’t recall what I did to somehow let my mother know that I could not stay there. But somehow, her face became as terrified as mine, and she suddenly insisted to the doctor that she was going to take me home. I remember both my parents and the doctor on the back stairs of the ancient hospital, arguing about the risk they were taking in signing me out of the hospital. My father was livid at my mother, believing she was doing the wrong thing. Our doctor was livid at my mother, believing the same. I only knew that home was the place I needed to be, and that home was where I would heal.

I lay on the couch with my new doll, feeling like death warmed over. But my heart was calmed and I knew I would survive.

I did, of course. It took me nearly a year to get back all the weight I lost over this traumatic experience. Eventually, I was fine physically, but bore an emotional scar that would never heal.

Not long after that healing, I had to undergo another battle with anesthesia with an oral surgeon. Even that young, my teeth were terrible; they always have been, and I have asked for years for dentists to just pull them all and give me dentures. Of course, they refused. Now I am missing half my teeth, and what is left is rotten. Had they listened to me long ago, when I had the money to pay for everything, I would not be in this condition. But they never listen to me, doctors, or dentists. They talk beyond me, over me, around me. They do not ever see me, or hear me.

I had to go to a larger city to get my first oral surgery, because there was no facility where I grew up that could handle it. It was nearly an hour’s ride there and back. I remember the dentist putting a mask on my face, which terrified me (I am asthmatic, and have been all my life; no one should ever ever do anything to an asthmatic that threatens to rob them of breath. It is incredibly cruel.). He was telling me some fairy tale to put me under. I fought the mask, but the mask won.

When I came to, I felt like hell. And then I had to get in a car for an hour. I spent most of that time vomiting. I never got over the memory of that awful mask and the sickness I had to endure after the surgery.

The next time I had to have oral surgery, I nearly screamed at them when they came out me with a mask. One of them sarcastically said “Would you rather have a needle in your arm?” And without hesitation, I answered “Yes!” I took the needle, and for the first time, I woke up when it was over, feeling only a little giddy and nothing else. It was a tremendous relief to have that happen for the first time. I thought the needle was the key, and that ever afterwards, I would be fine.

It wasn’t to be. The next oral surgery, I awoke, sick as a dog, vomiting again. The one after that used Versed, and put me in the “twilight” state. I felt a little sick and had a lot of pain, but it was not as bad as the one before. The next time, it was a colonoscopy, and the same twilight sleep. Except that they did not listen to my strongly written warnings about my problems with anesthesia, including waking up, and did not give me enough medication, or pulled back on it for some reason I still don’t know. What I do know, is that I awoke during the colonoscopy, and in spite of what Katie Couric or whoever might say, for me it was excruciatingly painful, and I screamed until they put me back under. I awoke screaming. They had to call my husband back to try to calm me down, which didn’t help much; he is lousy at helping calm anyone down. He can’t even calm himself down. At any rate, the doctor who did the colonoscopy strongly suggested that should I have a recommended endoscopy done, it should be done under general anesthetic. I have yet to have that endoscopy.

I told the anesthesiologist all this, and the only thing that seemed to interest him was the vomiting. “We’ll give you something to help with that,” he said, as though that would take care of everything. Will it erase the horror I have gone through? No. Could he guarantee I would not be conscious? No. What he did guarantee was that, with general anesthesia, they would have to intubate me, and put a tube down my throat.

Among my many anxieties, one of the worst is my swallowing/choking anxiety. I cannot take a pill, even a small one. I have to dissolve or crush any medicines I take. Or get them in liquid form. One doctor decided to be a smart-ass with me one time and said “Well, you swallow food, don’t you?” I sighed and said “You have no idea how long I chew before I swallow.” It takes me at least a half-hour, if not an hour, to eat a sandwich and a side.

The idea of a tube being stuck in my throat, in addition to the anesthesia terrors, and, worst of all, the idea alone that someone is going to cut into the tenderest flesh I have, in the most private part of me, was just too much. I started sobbing.

He did not understand why I was so upset. I was too upset to try to get him to imagine that he was going to have a tube rammed down his tender throat, waking up choking on it and terrified; dangerous drugs poured into his body that may kill him; have no idea if he was going to wake up during surgery, and have to live with the horror of being aware of the cutting and the pain and the humiliation; and that the surgery would involve cutting out a part of his penis, while students watched, that could likely render him unable to ever have a normal sexual relationship again. And that he would probably have to go through all of this more than once. Had I been able to get him to think about this, maybe he could have understood.

He didn’t, of course. He just thought I was some kind of blubbering, anxiety-ridden nutcase.

I asked him for a copy of the notes written up by the doctor who did the colonoscopy, so I could find out what went wrong. Couldn’t do that, he said; rules, hospital policy, you understand. No, I don’t understand.

He suggested a spinal. I showed him the paper I finally found last night, showing that I have spina bifida occulata. He said they could still do it, they would just have to do it higher up. I said it would be painful (which is true in every single thing I have ever read from anyone who ever had a needle stuck in the their spine); he denied this. I pointed out I would still be awake, and I wanted to be completely, totally, absolutely unaware of anything. He said they could also put me in the twilight state. Sure, that’ll work – just as well as it did with the colonoscopy.

Three hours from the time I arrived, I was done. And still knew as little as I did when I went in. I was emotionally and physically drained. I went to the bus stop, looked at the schedule, and realized I had just missed the bus – the one that only runs once an hour.

I fell apart. I smoked a cigarette, and tried to decide what to do. I was not thinking clearly, but all I could think of was to try to walk somewhere I could catch a bus home. I walked, weighed down with my backpack and my jacket and my bag and my hat and my cane, and sobbed, lost and alone.

A woman in a campus police cruiser got out of the car, and asked if I was alright. I sobbed “No” and tried to tell her what was gong on. She asked where I lived, and bless her heart, she offered to give me a ride home, which she did. I don’t think I could have dealt with anything else. I needed, just like that five-year-old, to be home.

And now I am, and sit here writing, feeling more and more shaky about this whole thing. I don’t want to do it. I don’t want to do it. I don’t want to do it.

I am so sensitive, too sensitive for this world, it seems. My heart cries out that if I do this terrible thing, if I allow this mutilation, that I will never be the same, and will wish I had never done it. I think, in my awful state, that death may be preferable to living with one more terrible trauma. Yet I know that I will probably go through this, some medical martyr, because they tell me I will die otherwise, and I truly do not want to die just yet. I hate them for making me feel this fear, and for making me feel trapped. I hate them for talking down to me, for not seeing me as a human being. I hate them for using that word “cancer” as an excuse to mutilate me forever. I hate them for having power over me I did not give them.

I want my power back. I want my life back. I want to be strong, and stop sobbing, and tell them exactly how I feel about their cold, sterile, heartless attitudes.

And maybe I will be able to do just that.

The Sentence is Pronounced

26 April 2008

Yesterday, I met for the first time with my gynecologic oncologist. It was a nightmare.

The first bus I had to catch was ten minutes late, which meant that I probably was not going to be able to catch the second bus to get there on time, and which meant I would have had to stand in the middle of nowhere for at least 30 minutes waiting for the next bus. I was freaking out when I called the bus company. Luckily, I got ahold of my quasi-friend there, M. She and I have talked a few times, and she calls me “Pearl” because there is a street in my city called Pearl which she swears is on the map but doesn’t exist in reality. She sounds like an older black lady, and has a wicked sense of humor.

This time, we weren’t joking around. “M., it’s ‘Pearl’. I have my first meeting today with my oncologist, and the bus was 10 minutes late, and I don’t think I can make it. Is there any way I can?” “Well, hon, hang on, just let me see what I can do,” she said. She got on the line with the supervisors as I watched the stops coming and going.

For ten minutes, she was on and off the phone, as I kept her updated on what stop I was at when. She told me the best they could do would be to hold the bus for one minute. No more. And it didn’t look like I would make it. But as she tracked my bus and the next one, somehow, I was suddenly at the stop I needed. “Hon, are you off the bus? Now look down the street – do you see a bus coming?” she asked. I can’t see much of anything most of the time; I’m about blind as a bat. “No,” I said, crying. “Wait – I see one!” I said. As it came closer, I saw it was the one I needed. “M., bless you, bless you, bless you, you are wonderful! I said to her.” “Well, if you want to tell my boss that, that would be a good thing,” she said. “You bet I will,” I told her. And I will. First thing Monday.

I got to the clinic, and it was as cold and sterile feeling as possible, in spite of the fact that they had put up bookcases with books, and two computers. They had no signs, and the computers were off, so I was afraid to use one or even to ask. It felt sterile. It felt disconnected. It felt all wrong.

I waited. I played Sudoku. I waited. I read “I Know Why the Caged Bird Sings.” I waited. I went outside and smoked. I waited. I waited close to an hour and a half to even see the doctor, by which time I was a teary, shaky, mess.

Gynecological matters freak me out. I’m sorry, I am just one of those women who curls up into an emotional ball every time I have to get a Pap test (and quite frankly, I often go years without one; in recent years, I’ve had to keep up with them, because I also have an ovarian cyst, and my gynecologist wanted to keep a close eye on it for a couple of years, so they happened in conjunction with each other.). I feel violated. I feel abused. I feel humiliated. I feel raped.

I don’t know why I feel this way, but I do. Perhaps it is because I have been raped, and of course, one of the things that happens after that if you report it is that you must have a gynecological examination. Perhaps it is because I had to have a gynecological examination when I was a young child. The details are unremembered; I vaguely seem to think I had a very bad staph infection throughout my body, and somehow or another, that required a gynecological examination. I really don’t remember well enough to know. All I know is I was about six or seven, and it was a terrible trauma, made worse by my mother being there, wringing her hands and repeating over and over “Oh, she shouldn’t have to go through this so young. Oh, God, she shouldn’t have to.” Or perhaps it simply is a humiliating, invasive examination, and I am hardly alone in feeling the way I do. I do not know.

I do know I have spent years avoiding male gynecologists. For many years, I got my exam from an LPN at a low-cost clinic; I called her my “Gyno-Nurse”. She was a Quaker, and a lesbian, and very gentle and calming. And she was about the only reason I was able to get through a number of Pap tests over 20 some years.

But here I am, with no female gynecological oncologists on my insurance list. Why aren’t there, I wonder? Why is it that there are a disproportionate number of male gynecologists, period? I do not understand this. The old “Saturday Night Live” skit, “Mel Gibson, Dream Gynecologist” aside (which even I admit was very, very funny), I can’t imagine most women wanting strange men poking around in their most private areas, with their too-large hands and lack of gentleness.

I am having a meltdown by the time I am called in to his office. I have gone prepared, complete with a list of my meds, a list of my medical problems, copies of my family trees with ages and causes of death and medical problems, a list of questions, and a cover letter explaining what I do and do not want. He shuffles paperwork, and does not even look me in the eye. He asks a few questions, and gives my answers to my questions too quickly for me to write them down. He draws a very bad graphic to show me where the area is that will be removed. This does not make me feel any better, as it is involves not just my vulva, but part of my vagina as well. He tells me there will be scarring. He tells me there is a high risk that I will go through all of this again, as it will come back. If I do nothing, he says, and do not quit smoking, I will have a 90% chance of this becoming cancerous within 10 years “and believe me, you do not want that,” he says darkly.

He cannot do a laser surgery because of where it is located. It will have to be by incision. I have clearly stated in my letter that I want to be completely knocked out by anesthesia and be completely unaware of anything, yet he seems to misunderstand that, and tells me I will likely have a spinal anesthetic and won’t feel anything. I not only do not want to feel anything, I don’t want to know anything. Luckily, I remember that I found out a few years ago that I have spina bifida occulta, and I tell him this. “Oh,” he says. “Then you probably will have to have a general anesthesia.” Which is what I told him specifically I wanted in the first place.

He clearly is angry that I am demanding that there by no student observers during this procedure. “This is teaching hospital,” he says (yes, I think, didn’t I say that in my letter? “I do realize this is a teaching hospital, but . . . .”). “They have to learn. This is how I learned.” He is clearly annoyed, and it doesn’t help when I burst out in tears saying “I don’t want some pimply-faced 20-year-old idiot watching this!”

This is not going well at all. I have been here for close to two hours, dreading the inevitable exam, and it has not yet happened. I am pure nerves; I am barely here, translucent skin and no bones.

It is time for the examination, and I am a wreck. I am not told ahead of time what to expect. Right off the bat, he tells me he will be applying vinegar for 30 seconds; he does not tell me why. It doesn’t register in my mind how very, very painful vinegar on my vulva could be. I nearly scream and vaguely am aware that I am holding the nurse’s hand and feel I am having an out-of-body experience. He is murmuring “I am sorry to have to cause you pain,” but I wonder if he means it. My skin on my vulva has grown so thin with age, that when he pulls away the vinegar-soaked cotton, some of my skin comes, too. I bleed. He tells me I will be bleeding for a few days most likely. I feel deliberately harmed and mutilated yet again.

There is, of course, always a speculum involved. They are never pleasant; they are always cold and at the very least uncomfortable. For an over-50 woman with a broken pelvis that has probably not healed yet or healed right, with osteoporosis, whose bones have moved tighter together, whose skin has grown thinner, whose vagina is dry and tight with age, it is a nightmare. I nearly scream and cry again from the pain. I am still throbbing from the vinegar, and still don’t even know why he did that.

Finally, it is time for the finger examination. Even that hurts, his too-large digits poking around my tight, thin, diseased opening. And it is humiliating. No one but a spouse or a lover should be there, should see this, should touch this way.

I am done, and sobbing as I get dressed. I feel dirty. I feel like I need to wash off the awfulness of this day. But I am not done.

I have agreed to my own mutilation. Three doctors have told me it is the best way to deal with this. I feel that I have no choice. They have hung that ugly “C” word above my head like a Sword of Damocles, and I look up and see the sharp point of cancer, and look down, and see the mutilated being I will become.

I wonder why it seems that mutilating women is such a big business with male doctors. Pregnant? Let’s cut it out with a C-section so I don’t miss my golf game. Breast cancer? We’d better make sure and cut off your breast, just in case. Some little problem after giving birth? Let’s cut out all your inner female organs. Cut, cut, cut. Do they get some perverse pleasure in feeling they are striking back at women? Do they hate us that much?

Now I must sit with someone else and make appointment plans and get information. I am emotionally and physically exhausted. I want only to be home, so I can cry on my bed, wash myself off, and try to feel human again. But paperwork must be handled, and the deed must have a date.

May 21^st. That is the date of my mutilation. That is the date I no longer will be the woman I am, or once was. That is the date after which, I will always wonder if anyone will ever want to touch me or love me again.

Ironically, I have an appointment with my psychologist that day. I tell them, and they snap “That is the only day he can do it.” The only day out of 365? That seems rather odd to me. But, like the good little girl I was brought up to be, I do not question. I write it in my little calendar, trembling, sealing my fate.

I am the last patient to leave. I have missed both buses I had schedules for, so I am lost in time, not knowing when one will show. I sit in the grass, and wait until one comes, some 25 minutes later. I wait another 15 minutes for the second bus. I should have taken a different bus, gone to the ATM, gotten out some cash, but I cannot face anything right now. I just want to be home.

The second bus driver is alone on the bus. I have had to start using my cane again, because I have begun to fall again. Before I can even sit down, he starts the bus, driving quickly, probably as late as everyone else was that day. I have had enough. He stares at me, and before he can tell me to move behind the line, I say “I cannot move well with my cane, so I am waiting until you stop again before I sit down.” He snaps that it will be a long time before he stops again, mumbles something under his breath, but pulls over for about two seconds – barely time enough for me to sit down. I want to smash his head in.

I finally am home, and shakily walk up the steps. I wonder why I am acquiescing in my own destruction.

Barely inside, I notice Cosmo has managed to dislodge the tube in his ear. I cannot take this. I cannot take anymore. But he is my baby, and I have to deal with his medical problems. I look at his ear, with a sick feeling in my stomach (a sick feeling I have carried with me since being at the clinic), looking at open flesh in both the top and bottom sections. I call C., the vet tech, and tell him what has happened, asking him if that will be a problem, since I was planning on bringing Cosmo in on Monday to get the tube and stitches out anyway. C. is one of the gentlest, sweetest guys I have ever met. He accidentally hangs up on me. Of course. I call back, and he apologizes, and says he hopes I forgive him. “Never!” I say. “I will be mad at you for the rest of my life.” He catches the tongue-in-cheek nature of my comments and laughs, then tells me as long as the openings in his ear stay open (in other words, I need to keep using the medication) and it keeps draining, it should be all right.

I have no extra money to spare, but this night, I do not care. I pay the fee to get cash out of the ATM I can walk to, and I pick up a 12-pack of Rolling Rock and go home again to order a pizza and watch the second version of “The Wicker Man” that I picked up the other day for $5. (It’s not worth it, by the way. The original is so overwhelmingly better, this Nicholas Cage version is almost truly awful. The only bright light for me was that Ellen Burstyn was in it.).

I know drinking isn’t the answer. I know all it will do is make me feel lousy the next day. Which it does. But somehow, I don’t care. I am shattered into pieces and desperately clawing to find my dignity and humanity again. I have been stripped bare emotionally as much as physically. I will strip myself further until there is nothing but raw emotion, and I will let it out safely at home, sob and scream and allow myself to mourn this coming death.

I Am Not Only the Darkness; Sometimes I Am the Light

18 April 2008

It does seem as though the darkness seeks me out. I wonder sometimes how much one woman can take at once? I know that others have taken more, but my ability to deal with things is as flimsy as the excuses I sometimes tell myself about why I can’t deal with more.

I teeter on the edge, always. It has always been my way to seek out the darkness, to know its name, and to befriend its terrible power. It is easier to deal with the enemy you know, as “they” say, than the one you do not.

I am not normal. I try to tell people that, but they seem to insist that I must be normal, as though it was required on my birth certificate, as though “normality” is something anyone can define, as though normal is something that anyone is. Everybody is slightly left or right or up or down or curlicue of the center that represents “normalcy”. The fact that I am in entirely another Universe from normalcy does not escape my attention, nor does it escape others’.

I am still trapped in that bureaucratic nightmare of doctors/pharmacies/Social Security/HEAP/help that isn’t help at all. And I instinctively at every turn try to get around the hoops they like to watch me jump through, and when I do, they get angrier.

My psychologist tells me to call this oh-so-helpful quasi-social worker I have spoken with before. She’s certain she will be able to help. So I call, and leave a message. And wait a week. And call again. And leave another message. And when we finally connect, I tell her exactly what I need help with. She sounds astounded that I would ask such things of her. So she gives me yet another phone number (do you have any idea how many phone numbers I have scrawled in how many little notebooks around here? I can’t make heads nor tails of any of them right now), and says she will call – one – just one – group that is supposed to help me with medical co-pays. The group she recommended to me the first time she talked to me. And guess what? I still have heard nothing, either from the group (who called two weeks or so ago and said they would mail me something “in a day or two”), nor from her. I just want to beat my head against a wall sometimes.

My gynecologist hates me now because I sought the advice of another gynecologist in another state. I suspect I am no longer her patient because I didn’t do things in the appropriate, expected manner in these things. Sniff.

I am sick and tired of the flotsam and jetsam of humanity that resides in the awful redneck bar down the block every night, so I call the police. Who refer me to the mayor’s office. Who refer me to a different police department. Who say it isn’t their jurisdiction, either, but, hey, they’ll pass along my complaint.

I can tell the officer thinks it amusing that I am trying to shut down a nasty redneck bar all by myself. And I won’t be able to, of course, but then, you never know.

This is what I do when I start coming out of a depression. I admit I get depressed; it’s pretty much a chronic condition for me, and I live with it. I think there is no coincidence that the use of antidepressants has risen dramatically during the Bush years. We want our women quiet and nice, you know. No drama queens, no histrionics, no weeping, no questioning. I’d rather cry and question than be the Stepford Wife. Again, this does not mean that I think no one should take antidepressants; I know they have been a godsend to many, and more power to you if they are for you. But they are oversold, and a recent study proved it. Make your own judgment.

At any rate, some time before I start coming out of a deep dance with the dark, I begin to be a bit obsessive about something or other. Usually it’s a computer game; sometimes videos (a series, in particular); sometimes genealogy. None of it is particularly harmful to me, short of wasting a bit too much time on that particular interest. But I do dive into it with something akin to passion, spending hours and hours locking horns with monsters or watching the “Homicide” staff solve another murder (or not). This time it has been genealogy. There is a reason for this period before the depression falls away, and it is not to show that I am also obsessive-compulsive; I am not.

As I have said, I am not normal. In fact, I have been called “weird” by a number of people in my life. I have math anxiety, and yet working Sudoku and logic puzzles focuses my mind. And that is the core of it.

When I start “obsessing” with something, it is always something that either requires thought, or forces focus, or both. It is a lot like working a math problem when you are very comfortable with the rules; it’s almost zen-like in its purity. This is what those things do for me. They force me mind to focus, force me to think rationally, force me to think period. And somehow, that lays the foundation for my Phoenix routine.

I am not depressed every minute, despite the way I may sound. I just don’t write as much when all the lilies are blooming and love is in the air and the babies and puppies are sooooooo cute, if you know what I mean. I tend to write when I am depressed. Or angry.

And that is the next step to my Persephone-like rebirth from Hades’ dark home. I get angry. About something. Anything. Usually something small that I – maybe, just maybe – may be able to do something about.

I have done it before. I fought City Hall and, damned if I didn’t win. Okay, so it was the Traffic and Parking Commission. Close enough. Long story I won’t go into now. But it ended with me (along with help, of course) forcing them to overturn a change in traffic that had caused innumerable problems on my street.

Give me a cause and I’m there. Although I sometimes feel like the “Rebel Without a Clue” in Bonnie Tyler’s song (“Standing on the corner in my boots and my leather/A little over the edge, a little under the weather”), getting mad and getting somebody to do the right damn thing can often pull me right out of the dark mire I so often live in.

It isn’t that I am out of that now. But you see, I don’t think it’s the depression that is the problem; I believe the problem is stress. I have marriage/divorce stress; I have financial stress; I have health stress; I have friend stress; I have cat stress; I have stress on the bus, and stress at the store, and stress on the phone. Just about every single day. And I have had it.

That’s why I wanted this one “helpful” woman to just give me some help, damn it. Make a few calls for me, make something happen for me, just get me a little de-stressed.

The only way I know how to de-stress is to stop the cause of the stress. And that’s impossible to do when I feel like I am twirling around inside a circle of doctors and pharmacies and agencies and attorneys and people, all yelling something at me I can’t hear because there are too many of them and only one of me.

I do feel like if this doesn’t stop, I am going to go over the edge. I can’t cope anymore; it’s all too much.

This week, the worst of it was my beautiful, beloved cat Cosmo. All of my cats are beautiful and beloved, of course, but Cosmo is special because he was the first of my ten to arrive. He has been with me the longest, and he is the only one who knew any of my last (much smaller) group of cats.

I went to feed him late dinner and found his ear looking like a balloon. I had no idea what was going on, but I knew it wasn’t something I could allow to go; I had to take him to the vet.

It takes me three buses, and an hour and a half to get to the vet, and the same coming home. The last thing I want to do with a sick cat is put them through that, but what choice do I have?

I latched his carrier to the “stuff” carrier I have, and went to the bus stop. Where I promptly managed to somehow fall down, including knocking Cosmo’s carrier on its side. This was the second fall in less than two weeks, and the same knee and elbow got scraped up yet again. I hit my fingers, wrist and ankle, too, judging by the pain I’ve had since then. I have decided to go back to using my cane; when I used it, I did not have these episodes. I had an MRI on Tuesday, and hopefully my neurologist will have some information for me on Monday about why I’m starting to fall down again (all she will say is “Well, it could be MS – but I don’t think it’s MS. It could be that you’ve had a lot of TIAs, although you’re awfully young for that. I can’t rule out MS, but I don’t think that’s what it is.” Just make a decision and diagnose me, please!).

At any rate, I am thinking this is an abscess on Cosmo’s ear, or something I have never dealt with before. I wish it had been an abscess.

Cosmo will be 18 years old in July. He has chronic kidney failure and a heart murmur, both of which he was diagnosed with eight years ago. I have been very lucky – he has been very lucky – to have lived this long period, much less with those diagnoses. He is probably the last good candidate in the cat world for major surgery.

It was not an abscess. He had scratched his ear to the point where he had blown a blood vessel, and had a hematoma in his ear. It was causing him a lot of pain, and the vet said they could drain it, but it would just fill back up in an hour, and the only real alternative was surgery.

I like my vets (it’s a two-guy practice). I have been going there for over 25 years. They know me; they know my situation; they know my cats. They know I am going through a divorce and have no money. They know I don’t know how I will pay them. But they have always been willing to work with me, which is one reason, among many, that I still go to them.

I felt like I turned to water as they told me he would need surgery. I knew it had to be extraordinarily risky for a cat Cosmo’s age and in his condition. It terrified me. But I could not let him suffer, and Cosmo has too much life left in him yet to let him go: it’s in his eyes, and his little nips, and his ravenous appetite for food and treats.

Crazy as it seems, I had to go with the surgery. It was the only choice I could see that gave him a chance to not be in pain and to live out his personal lifespan, whatever that will be.

I was a wreck. I sobbed until I couldn’t anymore. I’d left him at the vet (what kind of sense would it make for me to put him through that bus madness with all this going on?), and every time I looked over at his favorite place on the couch, I broke out in tears. When I fed the other cats, and had to leave his place empty, I sobbed some more. I was so afraid that this would end badly, and in most cases, it probably would have.

But Cosmo is a tough guy. And I have a wonderful cat group, that sends out purrs and prayers and white light or whatever energy each person’s individual spiritual beliefs dictate whenever one of us or our cats is in trouble. They have done studies on the power of prayer, although they have only bothered with the Christian groups. They should study our little group, mixed up of Wiccans and Sikhs, Jews and agnostics, as well as a variety of Christians. I have seen miracles from this group, and I was praying to the Goddess Bast for one more.

And I got it. Or rather, Cosmo got it. When they called me after his surgery, they told me he had come through it just fine. I was still a shaky mess, given that I had lost a cat while coming out of anesthesia, so until he was out of the anesthesia, I wasn’t sure I felt all that secure with being relieved. In fact, I wasn’t going to be relieved until he was home. Okay, so I will not be relieved until he is fully recovered.

I called, and he was out of the anesthesia, again, just fine. They kept him the night, because they inserted a drainage tube, and wanted to keep him there for a bit for that to kick in and function, and make sure there were no other problems.

Yesterday, I finally got to pick him up. My first husband is a cab driver, and I asked him the very large favor of taking a little time off work to bring his cab around, pick me up, stop at the store to pick up cat food, and then to go get Cosmo and bring him home. Did I mention my first husband is a really nice guy?

Cosmo seemed really glad to see me, and I was beside myself with joy to see him. I couldn’t stop petting and talking to him, telling him how incredibly strong and wonderful he is, and how proud I am of him.

Everyone at the vet’s seemed slightly amazed that he had done so well. The vet said (and I’m not sure how much he was joking!) “You know that cat group that sends out the purrs? They’re really good. I may need them some time in the future!”

I have to put some medicine around the tube in his ear, and also in his ear, for 10 days to two weeks, and then he will get the drainage tube removed. I am praying he leaves it alone and does not tear out the stitches; so far, so good. I am keeping my fingers crossed, too.

Today, it was beautiful and sunny, and 80 degrees outside. I took my daily walk before feeding the cats, and noticed all the buds and blossoms that weren’t there just last week. I smiled at seeing Persephone returned to the world, out of her dark place and into the light.

The Last Time

4 April 2008

 

 

It is Friday afternoon, April 4, and I am thinking about that shot ringing out in the Memphis sky.

 

I may be white, but somehow, many of my heroes are black. And Dr. King is certainly one of them. The vision, the dreams, the words, the courage – he had them all. And if just a few people carry the seed of his dream and try to awaken it within our cynical and defeated time, then his spirit and that dream will live on, no matter the hatred and fear that still surround us.

 

I was very young when it happened, and I don’t recall the impact at the time. I was twelve years old, and I did pay attention to the outside world, in the midst of worrying about zits and schoolwork and my parents and my own head.

 

I’ve been told often that I live in a “dream world” or my own world. Maybe I do. Lately, I have thought that many of us live in our own little worlds, be they someone like me or even those I don’t understand, who go to work every day, come home, eat dinner, talk to their children (however briefly), and go to bed so they can get up and do it all over again. I don’t understand how that is living; I don’t understand how anyone can that that life of quiet desperation. But many do, and I suppose they, too, are living in their own worlds, because they have to. I look at my own brother, bipolar and unable to deal with the world at large, and know that he has created his own small world, one in which he can (barely) function and survive. And that is okay; it allows him to survive, however small and narrow his life may be.

 

My world is vast. I have a rich, vivid interior life that surrounds me like a cushion to keep me going (most of the time, at least) when that outside world beats me down, as it so often does.

 

I peek out occasionally into that world, and there are times my heart rises in hope. One of those times was back in 1968, when Martin and Bobby were alive, and a cultural revolution was taking place, and music was alive and real and exciting (as opposed to the ugly, toneless talentless corporate thing it has turned into today). I loved Bobby Kennedy; I somehow knew that he was, after Dr. King’s death, the one hope for the future of the US.

 

And then he was assassinated, just like Dr. King. I can never get those sounds and images out of my head, though I have tried over the years. The screaming man “Get the gun! Break his hand if you have to!”, and the blood on the floor coming from Bobby’s mortal wounds as he lay there dying are imprinted forever on my brain. Hope ended that day. Until now.

 

And I read the BBC news feed today, as I do every day, and find that Barack Obama is the only one of the candidates to mention not only Dr. King, but Bobby Kennedy as well. And I am daring to allow hope to rise in my heart again, because I believe there is hope with Mr. Obama, a future of change like none we have heard the whisper of since those nights in April and June of 1968.

 

Even lost in my personal pain, I can look out through my misty glasses at the rest of the world and see. I do not need a mirror to see the world; unlike The Lady of Shalot, I dare to look out the window daily. I do not like so much of what I see. And there is no Lancelot waiting for me. But I look, and wonder, and dare to hope again, foolish as that may be.

 

But my own world is one I know, and the personal pain of it is something that engulfs me right now, a terrible prison that allows no escape. I float by and see the world outside, but I live in the world inside — my world.

 

I made the mistake of Googling “VIN surgery”. And found a British site that, while complete and well-written, with compassion and clarity, left me terrified and shaking. I have not stopped crying since last night. The horror of what they may do to me, the horror of what it may mean for my life, was there in stark pictures and language.

 

I shake and think “I cannot do this.” I will be mutilated again, violated again, left in tremendous pain for a time and possibly unable to ever make love again.

 

I can’t bear these thoughts.

 

I feel like my life is over.

 

I feel like I will never be a woman again.

 

I am afraid I will never be loved again, never be touched, never be gently cradled in someone’s arms who loves me, never feel the fire of passion, never feel the wonder of merging with another.

 

I miss my lover. I need him. I need him now. But he does not know these things, and even if he did, they may just push him further away from me.

 

One time, before they do this terrible thing to me, one time, before I am no longer who and what I am, one time before I cannot be a woman anymore, I want to feel his arms around me. I want to feel the passion that moves between us in a fiery way it never has with anyone else. I want to feel his warm breath on me, feel the waves and waves of orgasms flowing over me until I am satiated, content. I want to feel his kiss, his intensity. I want to feel his warm body, hold him tightly, feel the fire between us.

 

But I cannot ask this. I cannot even speak to him. He forbids it.

 

He could not handle my suicide attempt two years ago. He raged at me in e-mail, spent cruel words like a millionaire, refused to even listen to me. “Don’t give up on me,” I wrote. “Don’t give up on us.”

 

I have not seen him since that day. There have been detached e-mails, and a handwritten letter from him, and I responded with truth that probably cut him like a knife. He does not know if he can ever see me again.

 

The worst of it is that the last time we were together, the last time in my bed, where I am supposed to feel safe, he took me in anger. It was awful, and I cried for days. He hurt me, both physically and emotionally. And did not seem to care.

 

I was devastated and did not understand. And still don’t. All those times where the fire burned between us with passion and love, all those times where I fell to joy and delight under him, and he leaves me with this quasi-rape.

 

And that will probably be the last memory I have of my sexuality, battered and bruised. Cold and unfeeling. I can’t get warm anymore. The cold has seemed into every pore within me.

 

I cannot forgive him this. That my last time, my last time with him, will probably be that horrible anger and abuse. I will have no last time of hours of passion to remember, no last time of immense pleasure and joy, no laughter, no love.

 

And I want to ask him for that last time I wish. And I cannot.

 

And so this part of me that will be dead is already dead.

 

Waiting

30 March 2008

 

 

It seems like all I am doing lately is waiting. It’s like the world has slowed and stopped, and nothing is moving forward. I am waiting, but what am I waiting for?

 

When I was a teenager, I wrote a short poem that said something about waiting for spring, for life and rebirth. Now, at 52, spring is here again, and I am still waiting.

 

I am waiting to hear from Social Security. They should have all my paperwork, yet they claim they do not. I am tired of waiting for them; they don’t want to help me, they want to hinder me. I am done with waiting. This week, I will go to them, and demand action.

 

I am waiting for my landlord/apartment manager to cash my rent money for March. He has still not cashed it out. I was one day late, and e-mailed him to apologize profusely and ask for a break in terms of the late fee, but I have yet to get a response. I am waiting to hear from him, waiting for him to cash the rent money, waiting to arrange to go meet R., since G. offered (G. is my ex-landlord and R.’s friend. And maybe even mine.).

 

I am waiting for May, to plant my seeds. May is a long way off, or at least it seems that way right now.

 

I am waiting to hear from HEAP (they help out with heating bills in the winter. Yes, I know it’s spring. I still have not heard from them.).

 

I am waiting for my promised coupons for my converter boxes so I will have television next year. I ordered them in the beginning of February. They said it would take 2-3 weeks. They are still not here. I wrote down the reference number, but not the phone number I called to order them.

 

I am waiting to hear from D., knowing what a slim thread that hope hangs by.

 

And worst of all, I am waiting for surgery on my vulva, to cut away this frightening part of myself, waiting for my own mutilation. I have been waiting two months to find out the diagnosis, to get my questions answered, to make a decision. Yesterday, one piece of this ugly puzzle was sent to me by my gynecologist.

 

Who is no longer my gynecologist.

 

She is dumping me as a patient. How else do I understand these words: “At this point I feel that I have answered your questions the best that I can and I am more than willing to transfer your records as necessary. Good Luck in the future.”

 

Of course I am angry. Of course I am terrified. Of course I am left more lost than ever, having no idea now what I need to do about this surgery. Yes, I have decided to have it. And now I have no idea who will see me and who will do it.

 

I am hurt. All I tried to do was to get answers to questions I needed to ask before I could make a decision. I had a friend online who happened to work for a gynecological oncologist; she happened to offer to ask her boss to take a look at my records for a second opinion. I felt that J. was incredibly kind to do that, and that Dr. H. was gracious for agreeing to give an opinion. I thought it was a wonderful thing that happened, that helped me understand this better in my own mind, feel a little better about it, and begin to form an idea of what I needed to do.

 

Dr. G. wrote: “I appreciate your need to understand what is going on, but when a second opinion is offered it is not typically something that is done via conversation with another physician . . . .”

 

She is angry at me because I got another opinion from a well-respected expert who just happens to be in another state entirely and who just happened to agree when his employee asked him if he’d mind taking a look at my records!

 

And now she is dumping me, leaving me alone in this terrifying quagmire, unwilling to clarify any answers, and not even willing to see me again, even for a Pap test.

 

I cannot believe this. I am devastated. It is hard enough as it is for me to endure any gynecological examination; I am one of those women who finds a yearly Pap test something just short of a mini-rape. As a rape victim, I am allowed to say that. It is invasive, it is humiliating, it is frightening, and it is painful. And after this, I do not think I will ever have another one again.

 

I went to her because someone else did an x-ray, or MRI, or some such thing, for something else entirely. And an ovarian cyst showed up. This last visit was supposed to be the last time she checked the cyst regularly (every three to six months for a year or two), and I was supposed to simply go to a once-a-year Pap test/cyst check. And then I noticed the white spots on my vulva, and asked about them. And this nightmare began.

 

I don’t know where to turn. Do I call her nurse? Do I try to find another doctor on my own? Call my new psychologist and ask her for help? Do I ask my doctor for a referral? I am lost, and a terrified child right now, wondering why I keep getting kicked by the Universe when all I try to do is be a decent person and survive.

 

Making phone calls is something that I am finding harder and harder to do. I make one call, they tell me they can’t help me and give me another number. I cry for an hour, try the second number another day, and they tell me they can’t help and give me a third number. I am overwhelmed, frustrated, and feeling like I cannot handle any of this anymore.

 

I don’t want to call anyone anymore. I don’t want to hear another “No.” I don’t want to be in this position.

 

I am tired, and sick, and sick of being tired and sick. Every time I stick my head out of my shell and try to make something a little better, I get stomped on. And I still have no answers, and still I wait.

 

Today is the anniversary of the suicide of a friend of mine. He was a retired social worker, in his 70s, and he jumped off a tall building. I understand why he did it, I think. His marriage had failed (his third marriage). He had had open heart surgery, and could not do a lot of the things he used to be able to do. He had no work to make him feel useful and part of the world. He was alone. And long ago, his sister had thrown herself off a building in the same area that he chose to do the same thing. He loved his sisters more than anyone in the world, and he had lost both of them.

 

I miss him. And although I am not inclined to follow his lead, there are days that I wonder if he did not do the right thing. I know some may be horrified by that statement, but sometimes – not all the time, not even most of the time – but sometimes, it is the right thing to do to take your own death in your hands and end the suffering.

 

I miss you, P.; you brought much light and laughter into many lives, and that will never be forgotten.

 

This World Is Too Cruel for Me

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.

 

There Be Friends Here

4 March 2008

 

It’s raining again. A cold rain, slicing to the bone. Every Tuesday, every Friday, for weeks now it has been rain or snow. It chills me, entices me to lay down and sleep, forgetting the pain and fear in my life right now.

 

I thought I was going to have to vote in the rain. I thought there may be long lines, so I took a portable chair. And I wore a sweater, and took a book, and water, ready for a long wait. But I was nearly the only one there. So I lay all my ton of belongings I carried on my aching back in a chair, and went to the voting booth and did my civic duty. My mother never missed a vote, and she instilled in me the importance of voting. I still believe in it somehow, although it seems things never change, but only get worse.

 

The rheumatologist’s office called about the insurance coverage for the Reclast. I don’t think she knew what she was talking about, but it sounded like I would have to pay over $1,000 to do this! Crying again, with the rain always around me, I told her I couldn’t even pay my bills right now. She gave me a phone number to call the company. I couldn’t right away. I feel so defeated at each little thing I cannot do, each little thing that stands in my way, each hoop I have to jump through. And I get depressed and just cannot make that next phone call; not today, not right now, still in tears, feeling like a worthless piece of humanity. Tomorrow, maybe, but not today. Not right now. I can’t take one more rejection.

 

Yesterday, I see my doctor. I really like Dr. R. He is kind, and funny, and smart. He will probably finish up his residency this year, and be gone, and I will be lost, starting all over again with someone new who may be terrible. Dr. R. listens to me, expresses his opinion, but allows me to be part of my own medical care. That is important to me.

 

Yesterday, of course, I cried when talking of this possible (probably impending; I do not see how I can escape it) mutilation of my genitalia. He assured me that what I felt was not true, that someone would love me again. I wish I believed that.

 

We talked of the financial burden, of how I cannot pay for my medications or doctor visits anymore. I have $10 on me that will buy me a little tobacco, some potato chips, and some bread and tomatoes maybe. I do have a stocked pantry and fridge, so I can survive for now with food. But I don’t feel like eating; I just feel sick and depressed. He wants me to go on antidepressants, of course, and I ask him “If you were in my shoes, wouldn’t you be depressed”? He has to answer yes, of course, and tells me his psychiatrist wife and he argue exactly this point. Some depression is situational, and medication is not the answer, he says. But being depressed changes the brain chemistry and makes it more difficult to get out of the depression, she argues. I believe him, not her. I read that a new report asserts what I have believed for some time: that we are over-medicated, and that some of these antidepressants do nothing to help that talking therapy couldn’t do better and quicker. This I believe. What I need to lift me out of depression is some help to get out of this poverty, to feel like a human being who deserves to be loved, to feel good about myself again, to have the things I need, to not have to worry about how I will feed my beautiful cats, my children.

 

So often in this terrible time in my life, I feel totally alone. No one calls; no one offers help; no one visits. And I sit alone and feel abandoned, lost, and like not a soul truly cares about me. And that makes me sob from somewhere very deep within me, a core that has been broken and shattered in the past, that does not believe, and that fears and believes the worst, always.

 

And just when I am about to fully believe that I am alone and that no one cares, there is a breeze that flickers and opens a door, and I look astonished as love begins to pour my way.

 

There be friends here. I am not alone.

 

Thursday, my old friend K., who moved and no longer lives here, called to tell me she needed to pay an old traffic fine, and that she would drive over and run me around for errands and visit for awhile.

 

I always pray for someone to somehow ask if they can run me around to do errands.  And that prayer is almost never answered. Instead, I take the bus, in the rain or snow, walking part of the way, hurting in every part of my body, so that I may get my medications, get my mail out, get food, get cat food, go to the doctor, whatever it is I need to do. And I am weary, so weary, when I am done. I can do nothing else; I am completely drained. It is a nightmare I wish would end, but I see no end. Even if a car dropped from the sky for me, I could not drive it. I have terrible driving anxiety, and can’t drive. It frustrates me terribly. I used to love to drive. I drove from Florida to Ohio, I drove around the South, I took the reins of a large van during a long summer trip around the country, and drove the Ventura Highway. It was freedom and it was beautiful. But somehow that, too, has been taken from me.

 

So I must ask or pray for help that rarely comes. It isn’t that the few friends I do have don’t help because they don’t wish to. They don’t have cars themselves, for the most part. Or they don’t live nearby, and can’t afford the gas. And that is not fair to them.

 

But K. offered, and I was so happy.

 

I waited. And waited. I waited until I had a half-hour before the post office closed, because I had a large envelope I had to mail to apply for emergency energy assistance. It had been waiting for two weeks, and I desperately needed it mailed NOW. I wrote a note for K. and stuck it on the door, and walked to the post office. I had no choice. I got things taken care of there, and had to pick up my medications at the pharmacy. I kept watching for K., not knowing what she drove, not even knowing what she looks like now, because she has suffered from so much over the years since I last saw her. She is bipolar, and has gone through hell with that illness. On top of that, she has had all sorts of physical problems, and had her neck operated on not that long ago. But she was given the okay to drive, so she was coming, to see me, to help me. I was excited about seeing her as much as anything else. A friend wanted to see me! A friend wanted to come to my home and spend time with me! I was so looking forward to this.

 

But I had no choice on the two errands. And I came home, crying, alone, aching in my sad body. She had not been there.

 

I checked the phone, and there were numerous messages from her. She had gotten hung up at the Courthouse. It had taken her hours to get it straightened out. She was still coming, she was on her way, and she would be here. She felt terrible that I apparently had to go out before she got there. But she was coming.

 

And she did arrive. We talked like old times, and hugged, and I felt so much less alone. She even helped with the cats by scooping the litterboxes as I fed them! That is friendship, believe me. Ten cats and seven litterboxes is dedication. Her help meant a lot to me, drained terribly as I was. And we managed to get out in time to get to a shopping center and pick up a couple of things I needed (an envelope sealer and a couple of new litter scoops). She even bought me the litter scoops. And she brought me some gifts of things she no longer needed or wanted: an old but very working warming and massaging “chair”, some toys for the cats, a sweater, and some other odd things. I told her I felt like it was Christmas and she laughed.

 

She wasn’t done. She and her husband had talked, and decided there was enough money for her to take me out to dinner. At Red Lobster, my favorite. We had a wonderful dinner, with a wonderful server who was delighted we weren’t upset with him for taking a bit too long to get to us because he desperately needed a smoke break. Both of us being smokers, we just laughed it off and said “No problem.” He served with a flourish the rest of the meal, making me smile.

 

It was late, so K. asked if she could crash on the couch. I was going to ask her, but she beat me to it. I offered her R.’s room, but she didn’t want to deal with the “bad vibes”, and said the couch was perfectly fine. I got her some clean sheets and blankets and pillowcases, and got her set up. She was happy and told me the new place felt very comfortable and homey. J. told me that, too, and I am very happy the few people who have chosen to come over feel that about my space.

 

In the morning, she left, and we hugged goodbye. I thanked her profusely for all her help and support, and she took off into the morning light.

 

Maybe I have had the wrong friends, I think. There has always been something in my life that has made friendships tenuous for me, and I don’t understand why. I do with a few, but not with so many. And I have lost so many over the last 10-20 years. Some from death, it is true, but most are still alive; they just no longer speak to me.

 

I can understand it with R. She neglected her poor dog and cat, and I called the Humane Society on her, after waiting and talking to other people in the neighborhood, many of whom were itching to call, but didn’t. So I sighed and became the pariah once again. And she would no longer speak to me. She does now, the rare times I see her, and all I can think about is that her child is now in prison, the child I watched grow from a baby to an adult, the child who raped a young woman. I know the way she treated him growing up, and I tried to be the adult on the outside he could come to for sanity. But I guess I did not do a very good job of that, and I am crying inside that he turned out to be a rapist. It just tears me up.

 

I don’t understand it with H. and M., or S., or K2, or T.. All I did with H. and M. was question M. Apparently, this was not allowed, and they refused to speak to me after that. S. apparently thinks I insulted her religion, and she believes feral cats should be shot. Other than the fact that that particular statement made me feel like saying I thought she should be shot, I still thought I could just educate her and tried to. But she no longer wanted anything to do with me. K2 got upset with me for various reasons, and did realize she had been too judgmental, and came back into my life briefly. But now she no longer answers my e-mails, and I wonder if she has once again left my life. T. accused me of not taking good care of my cats, something I really do not understand. She took me to the vet numerous times. She’s seen the cats, and knows how friendly and happy they are. I had matting problems with two of them at the time of the move, which she helped us with, and that is the only thing I can think of that could possibly have brought her to this view. I don’t understand the whole thing; I only understand that we are no longer friends.

 

Others have been friends as long as we worked together, or lived close, but they drifted away after I or they left the job, or they moved. Somehow they just did not care enough to continue the friendship outside of those confines.