approach with caution
Nov. 2nd, 2003 09:59 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
jaeclecticPreface:
This is ancient history.
Partly it has just been on my mind, and I hoped for some cathartic effect of putting these events in writing. And partly I've wanted to tell people (friends met in the past few years) about all this, but at every moment when it crossed my mind it just seemed like a bad time to spoil everyone's mood.
So now you can choose for yourself the moment when you want to have your mood spoiled.
The short version:
My one and only really serious, long-term relationship: Jan. Lived with her for over 5 years. We were in the middle of breaking up and she had a brain aneurism.
Among the many painful aspects of this, I had power of attorney for her, and was therefore the one who signed the papers authorizing the surgery that saved her life, but left her permanently brain damaged.
OK, if you are already depressed, stop now.
The long version, I mean really long:
It's hard to know exactly how far back to start.
The relationship, I guess. Basically, not so good all along, weak foundations. I was wildly infatuated with someone I barely knew, slept with her, we started living together almost immediately. I was 23, she was 27 and unemployed and living with her parents.
I could tell several stories but this is going to be long enough as it is. Just trust me, here's the pattern: I like to take care of business, Jan likes to be taken care of, most of the time that works. I have money, Jan often does not, so I pay all the bills, but what does that matter, it's love. I like Jan's friends, somehow Jan is never comfortable w/ mine. But you know, the whole thing is really cozy, being a couple. It seems important that I prove able to do this.
But after 5 years I become unbearably claustrophobic, go through a rather painful process of admitting to myself that I want the relationship to be over. Then begin the painful process of telling her that I want it to be over. The saving grace of my sanity is that I actually got the words out, I did tell her: "I do not love you anymore and I want you to move out".
But I didn't actually enforce it. Because by that time she is estranged from her family, and she's been having a long series of health problems (13 hospitalizations in a year, for a recurring infection in her knee, which one doctor thought was self-inflicted and at the time I didn't believe it, but now I just don't know anymore), and of course she's out of work again... Not only didn't she move out, we're still sleeping in the same bed.
At this point, she has for some time been having severe headaches.
An anecdote: I am lying in bed reading, Jan comes in and hits me with a pillow. Repeatedly. Hard. In the face. I tell her she is hurting me and ask her to stop. She says, and I quote, "I'll show you pain" and she gets a sharp pair of scissors and scratches her own arm.
One day soon after this, a Saturday, we are planning to go shopping. She asks if I'm ready to go and I say, no, I want to go through my budget first. So she goes upstairs to lie down. And then when I try to wake her up, she doesn't answer.
And then I see that her back is arching, and I realize she is having convulsions, and I call for an ambulance.
The ambulance people ask about the scratch on her arm. I make something up. They want to know if she does drugs (she is a recovered alcoholic, she does not).
First we get taken to the closest local hospital, in a working-class suburb a couple of cuts down from the working-class suburb we live in. I am tortured by the bank of cheap pay phones that repeatedly fail to accept my credit card number. I am trying to call Jan's sister or mother. Her sister has an unlisted number. Her mother is manic depressive, and takes the phone off the hook whenever she is home. I can tell she's home because I'm getting a busy signal.
The doctor keeps coming out and asking if I've gotten a hold of her family yet. (It has not yet occurred to me to tell them I have power of attorney.)
Finally, it occurs to me to call Mrs. McAteer's next-door neighbors. They have a listed number, they have met me a few times. They go knock on her door.
Meanwhile, the hospital has determined that this is out of their league, and Jan will need to be moved to one of the good hospitals in Pittsburgh. The doctor finally tells me she has a brain aneurism which has ruptured and that she is probably going to die.
As you can probably tell, to this point the details of this day are amazingly painfully sharp. Now it all blurs. The next thing I remember, I am at the other hospital, Jan's sister and mother are there, but I have told the surgeon that I have power of attorney. He explains that without the surgery she will certainly die, and with the surgery she will certainly be brain damaged, but he can't say how badly.
Of course there is no time to think. Unfortunately this scenario is not one Jan and I have discussed. I decide that she would want to take a chance on life.
I still have no idea whether this was the right thing to do.
Then follows 2-1/2 weeks of hanging out in the waiting room of the neurosurgery intensive care unit. A very interesting micro-culture. There are complicated rules about when you can see your patient, which the hospital staff may override for various reasons. People who have been there a few days help me get acclimated. After a few days, I do the same for new-comers...
Then another couple of weeks in a step-down unit. Then she gets transferred to a rehab hospital, still in a coma.
She is in rehab for 6 months. The whole time, I am taking care of business. I am talking to the social workers. I am arguing with her HMO who do not want to pay the QUARTER OF A MILLION DOLLARS they owe the hospital for 2 brain surgeries, 2-1/2 weeks in the neurosurgery intensive care unit, etc etc.
She does come out of the coma. She has severe speech impairment. She has limited mobility. She has short-term memory formation problems, hard to really gauge due to impaired speech.
Her personality is completely, 100% intact. She still feels like her.
None of her friends come to visit. It is too creepy.
Only exception to that rule, her best friend (coincidentally, ex-lover) Fran. More on Fran later...
At some point, it dawns on me that her family will expect me to take care of her for the rest of her life. I am terrified. I go into counciling (for the first and only time in my life, so far) in order to work up the nerve to tell her sister that we had actually broken up and I do not want Jan to move back into my house.
She is responding well to therapy, but the insurance company steps in again, after 6 months in the rehab hospital they will not pay for any more. The social worker tells me this is actually fair, that Jan had reached the limit of how much she could improve. I don't believe it, but have no power to argue with the expert professionals.
She leaves rehab and goes to her mother's house. Her speech and mobility gradually but noticably worsen.
For something like another year, I visit once a week. We either go to the mall, or just out to lunch. I become extremely adept at getting her wheelchair in and out of the trunk, and at helping her in the toilet.
I don't enjoy seeing her, but she enjoys seeing me. I feel guilty, guilty, guilty.
The memory stuff is weird. Every time she sees me, she says "hey, look at you" in a tone of great surprise and delight. I have lost a great deal of weight during the 6 months that she was in a coma. Is she still picturing me heavy?
Another example: I get a call from her co-worker Betty Lou, an older woman with a grown son. Betty Lou's son has died from carbon monoxide poisoning, a freak accident, and she wants Jan to know. I tell Jan who reacts with completely appropriate shock and dismay. The following week, Fran happens to be there. I tell Fran about Betty Lou's son, and Jan's reaction is identical to the previous week, she seems utterly surprised. I can't, of course, be sure what this means, because her speech is not adequate for complicated and abstract discussions. But it certainly seemed that she had no memory of the previous week's discussion.
I begin to try gradually reducing the frequency of my visits. Jan complains. I tell her I'll see her in a couple of weeks and she says "aww, no". She often tells me she loves me. I wonder about the whole memory thing. I wonder if she remembers that I broke up with her.
Finally, I decide that if I had an ex-lover who wasn't brain damaged, I wouldn't put up with this behavior, and I don't have to put up with it from Jan. I get offered a job in England which gives me a perfect opportunity to run away from my life (which has in the interim been taken over by my sister's marital problems, another long story for another day).
When I move back from England, two and a half years later, I choose not to try to see Jan. For a while, I keep in touch with Fran, who tells me that Jan's mother has died, that Jan is in a group home but keeps getting in trouble for smoking in her room. Fran tells me that I have made the right decision to not see Jan anymore, because Jan doesn't really remember me. I don't actually trust Fran, whom I have known to lie before -- and besides, convenient as it might be, this theory does not seem to match my own observations. I suspect Fran has decided (not necessarily consciously) that she likes being the center of Jan's universe.
Since I have moved to California, I have not been in touch with Fran or anyone else who knows Jan's whereabouts or well-being.
Rationally, I know that this story does not make me seem like a bad, evil person. But I keep thinking, am I good enough? If I were a better person, would the whole story be different? There is some archetypal story in the back of my head, where the lovers are having trouble, and one of them suffers a grave injury, and the other one realizes in a blaze of light that it was really true love after all... But this is not the story that I lived.
The central event of this story -- Jan's aneurism -- happened in early 1990. It troubles me that the whole thing still troubles me as much as it does. Sometimes this seems like a very normal response to trauma. Other times I just think that I am permanently fucked up...
Afterword:
I actually wrote this a couple of weeks ago, then set it aside. Then today it occurred to me that just before I went out of town would be an excellent time to actually post it, kind of reinforcing that I'm not really trying to start a conversation, just wanted to tell the story.
Because it is actually important to know, if you want to know me.
I thought for a while about whether to make this post private, whether to allow comments, etc. Decided that at least one person who I would like to read this is not on LJ, that anyone who doesn't know me probably won't be interested enough to read something this long and torturous, and if they do, who cares? and as for comments... Well, I can't really imagine anyone saying anything that will make me feel much better or worse -- but my own response to reading a negative post which has comments turned off is that it conveys a certain emotional weight in and of itself, a specific rejection of sympathy -- and I don't particularly want to send that message. So I am just putting this out there for now, maybe I'll hide it later...
This is ancient history.
Partly it has just been on my mind, and I hoped for some cathartic effect of putting these events in writing. And partly I've wanted to tell people (friends met in the past few years) about all this, but at every moment when it crossed my mind it just seemed like a bad time to spoil everyone's mood.
So now you can choose for yourself the moment when you want to have your mood spoiled.
The short version:
My one and only really serious, long-term relationship: Jan. Lived with her for over 5 years. We were in the middle of breaking up and she had a brain aneurism.
Among the many painful aspects of this, I had power of attorney for her, and was therefore the one who signed the papers authorizing the surgery that saved her life, but left her permanently brain damaged.
OK, if you are already depressed, stop now.
The long version, I mean really long:
It's hard to know exactly how far back to start.
The relationship, I guess. Basically, not so good all along, weak foundations. I was wildly infatuated with someone I barely knew, slept with her, we started living together almost immediately. I was 23, she was 27 and unemployed and living with her parents.
I could tell several stories but this is going to be long enough as it is. Just trust me, here's the pattern: I like to take care of business, Jan likes to be taken care of, most of the time that works. I have money, Jan often does not, so I pay all the bills, but what does that matter, it's love. I like Jan's friends, somehow Jan is never comfortable w/ mine. But you know, the whole thing is really cozy, being a couple. It seems important that I prove able to do this.
But after 5 years I become unbearably claustrophobic, go through a rather painful process of admitting to myself that I want the relationship to be over. Then begin the painful process of telling her that I want it to be over. The saving grace of my sanity is that I actually got the words out, I did tell her: "I do not love you anymore and I want you to move out".
But I didn't actually enforce it. Because by that time she is estranged from her family, and she's been having a long series of health problems (13 hospitalizations in a year, for a recurring infection in her knee, which one doctor thought was self-inflicted and at the time I didn't believe it, but now I just don't know anymore), and of course she's out of work again... Not only didn't she move out, we're still sleeping in the same bed.
At this point, she has for some time been having severe headaches.
An anecdote: I am lying in bed reading, Jan comes in and hits me with a pillow. Repeatedly. Hard. In the face. I tell her she is hurting me and ask her to stop. She says, and I quote, "I'll show you pain" and she gets a sharp pair of scissors and scratches her own arm.
One day soon after this, a Saturday, we are planning to go shopping. She asks if I'm ready to go and I say, no, I want to go through my budget first. So she goes upstairs to lie down. And then when I try to wake her up, she doesn't answer.
And then I see that her back is arching, and I realize she is having convulsions, and I call for an ambulance.
The ambulance people ask about the scratch on her arm. I make something up. They want to know if she does drugs (she is a recovered alcoholic, she does not).
First we get taken to the closest local hospital, in a working-class suburb a couple of cuts down from the working-class suburb we live in. I am tortured by the bank of cheap pay phones that repeatedly fail to accept my credit card number. I am trying to call Jan's sister or mother. Her sister has an unlisted number. Her mother is manic depressive, and takes the phone off the hook whenever she is home. I can tell she's home because I'm getting a busy signal.
The doctor keeps coming out and asking if I've gotten a hold of her family yet. (It has not yet occurred to me to tell them I have power of attorney.)
Finally, it occurs to me to call Mrs. McAteer's next-door neighbors. They have a listed number, they have met me a few times. They go knock on her door.
Meanwhile, the hospital has determined that this is out of their league, and Jan will need to be moved to one of the good hospitals in Pittsburgh. The doctor finally tells me she has a brain aneurism which has ruptured and that she is probably going to die.
As you can probably tell, to this point the details of this day are amazingly painfully sharp. Now it all blurs. The next thing I remember, I am at the other hospital, Jan's sister and mother are there, but I have told the surgeon that I have power of attorney. He explains that without the surgery she will certainly die, and with the surgery she will certainly be brain damaged, but he can't say how badly.
Of course there is no time to think. Unfortunately this scenario is not one Jan and I have discussed. I decide that she would want to take a chance on life.
I still have no idea whether this was the right thing to do.
Then follows 2-1/2 weeks of hanging out in the waiting room of the neurosurgery intensive care unit. A very interesting micro-culture. There are complicated rules about when you can see your patient, which the hospital staff may override for various reasons. People who have been there a few days help me get acclimated. After a few days, I do the same for new-comers...
Then another couple of weeks in a step-down unit. Then she gets transferred to a rehab hospital, still in a coma.
She is in rehab for 6 months. The whole time, I am taking care of business. I am talking to the social workers. I am arguing with her HMO who do not want to pay the QUARTER OF A MILLION DOLLARS they owe the hospital for 2 brain surgeries, 2-1/2 weeks in the neurosurgery intensive care unit, etc etc.
She does come out of the coma. She has severe speech impairment. She has limited mobility. She has short-term memory formation problems, hard to really gauge due to impaired speech.
Her personality is completely, 100% intact. She still feels like her.
None of her friends come to visit. It is too creepy.
Only exception to that rule, her best friend (coincidentally, ex-lover) Fran. More on Fran later...
At some point, it dawns on me that her family will expect me to take care of her for the rest of her life. I am terrified. I go into counciling (for the first and only time in my life, so far) in order to work up the nerve to tell her sister that we had actually broken up and I do not want Jan to move back into my house.
She is responding well to therapy, but the insurance company steps in again, after 6 months in the rehab hospital they will not pay for any more. The social worker tells me this is actually fair, that Jan had reached the limit of how much she could improve. I don't believe it, but have no power to argue with the expert professionals.
She leaves rehab and goes to her mother's house. Her speech and mobility gradually but noticably worsen.
For something like another year, I visit once a week. We either go to the mall, or just out to lunch. I become extremely adept at getting her wheelchair in and out of the trunk, and at helping her in the toilet.
I don't enjoy seeing her, but she enjoys seeing me. I feel guilty, guilty, guilty.
The memory stuff is weird. Every time she sees me, she says "hey, look at you" in a tone of great surprise and delight. I have lost a great deal of weight during the 6 months that she was in a coma. Is she still picturing me heavy?
Another example: I get a call from her co-worker Betty Lou, an older woman with a grown son. Betty Lou's son has died from carbon monoxide poisoning, a freak accident, and she wants Jan to know. I tell Jan who reacts with completely appropriate shock and dismay. The following week, Fran happens to be there. I tell Fran about Betty Lou's son, and Jan's reaction is identical to the previous week, she seems utterly surprised. I can't, of course, be sure what this means, because her speech is not adequate for complicated and abstract discussions. But it certainly seemed that she had no memory of the previous week's discussion.
I begin to try gradually reducing the frequency of my visits. Jan complains. I tell her I'll see her in a couple of weeks and she says "aww, no". She often tells me she loves me. I wonder about the whole memory thing. I wonder if she remembers that I broke up with her.
Finally, I decide that if I had an ex-lover who wasn't brain damaged, I wouldn't put up with this behavior, and I don't have to put up with it from Jan. I get offered a job in England which gives me a perfect opportunity to run away from my life (which has in the interim been taken over by my sister's marital problems, another long story for another day).
When I move back from England, two and a half years later, I choose not to try to see Jan. For a while, I keep in touch with Fran, who tells me that Jan's mother has died, that Jan is in a group home but keeps getting in trouble for smoking in her room. Fran tells me that I have made the right decision to not see Jan anymore, because Jan doesn't really remember me. I don't actually trust Fran, whom I have known to lie before -- and besides, convenient as it might be, this theory does not seem to match my own observations. I suspect Fran has decided (not necessarily consciously) that she likes being the center of Jan's universe.
Since I have moved to California, I have not been in touch with Fran or anyone else who knows Jan's whereabouts or well-being.
Rationally, I know that this story does not make me seem like a bad, evil person. But I keep thinking, am I good enough? If I were a better person, would the whole story be different? There is some archetypal story in the back of my head, where the lovers are having trouble, and one of them suffers a grave injury, and the other one realizes in a blaze of light that it was really true love after all... But this is not the story that I lived.
The central event of this story -- Jan's aneurism -- happened in early 1990. It troubles me that the whole thing still troubles me as much as it does. Sometimes this seems like a very normal response to trauma. Other times I just think that I am permanently fucked up...
Afterword:
I actually wrote this a couple of weeks ago, then set it aside. Then today it occurred to me that just before I went out of town would be an excellent time to actually post it, kind of reinforcing that I'm not really trying to start a conversation, just wanted to tell the story.
Because it is actually important to know, if you want to know me.
I thought for a while about whether to make this post private, whether to allow comments, etc. Decided that at least one person who I would like to read this is not on LJ, that anyone who doesn't know me probably won't be interested enough to read something this long and torturous, and if they do, who cares? and as for comments... Well, I can't really imagine anyone saying anything that will make me feel much better or worse -- but my own response to reading a negative post which has comments turned off is that it conveys a certain emotional weight in and of itself, a specific rejection of sympathy -- and I don't particularly want to send that message. So I am just putting this out there for now, maybe I'll hide it later...
