Choosing my Self in difficult times
I'm journaling this because it helps me find clarity. Gives me perspective. Lets my friends know what is going on in my life... and might be helpful to others who are experiencing similar difficulties.
The topic is catastrophic illness. That, and how the temperment of the one who is ill affects both the outcome for themselves and those who love them. And I'm trying to figure out what I can do differently.
We are born. We live. We lose loved ones. And then we die. And I'm cool with that. Really.
I've had two sisters and a step-sister struggle with catastrophic illness. One died, one made a miraculous recovery after being on hospice, and the other... is... complicated.
With the sister who died, she was very headstrong and high-strung. She didn't want to make the changes necessary to recover from her illness. She lacked the patience and the self-control, frankly, and so she died, though a year later than I estimated, mainly because as her condition deteriorated she'd get scared, comply for a few weeks or a couple of months with medical care, and then she'd pull the plug, literally, and go back to a lifestyle that was physically depleting. She would get angry, and cry, and ask why this was happening to her, and I'd get her to a place where she'd acknowledge that she had been neglecting her health and that she was willfully non-compliant with regards to medical care and she'd agree to do what needed doing. And then she'd get to feeling better and revert to her prior way of being. And then she'd get to feeling worse, and she'd cry and beg for help, and get angry and irrational and verbally abusive when she didn't get what she wanted. She pushed people away with one hand and pulled with the other. It was a vicious cycle that last two excruciating years. My only consolation, my only rationalization, is that she loved what she did, and she died doing what she loved.
Sister number Two was put on hospice when she came out of remission and her cancer was found to have metastasized to several places. She was in discomfort, and my step-sister's twin, who is a pharmacist, and my step-mother, who was a home health care nurse, did everything they could to "make her comfortable." They'd lost their grandfather a few years previously after a terribly painful and drawn-out experience, and they didn't want her to suffer. This sister knew how to ask for help, and how to accept it. She was angry, feeling like her life was being stolen from her, etc, but she invited people in. Her church congregation stepped up, brought food and comfort and companionship. Her friends visited. And I visited. And I spoke my truths to her, too. I told her to get up out of bed. Told her that when people are asked what they would do if they were told they have weeks to live they don't say "I'd lay in a hospital bed drugged out of my mind." I told her her life wasn't over, that she had as much time as I had -- today. Get up. Get up. Live. And yeah, maybe saying those things was a bit harsh, and maybe I could have found better ways to say them. But she got up out of that bed, and she lived her life, and she did her chemo again, and she is here now, two years later.
Sister number Three is like sister number One. Headstrong and high-strung. She's never been very good at asking for help and she's very reluctant to accept help. She's also extremely contrarian, and bi-polar or similarly biochemically imbalanced. I wouldn't go so far as to call her mentally ill, though she does have her moments -- she did try to kill herself two years ago last month, and she battles both depression and "fits" of some sort in which she says and does things that are completely unacceptable and often doesn't remember what she said or did during her outbursts. She's lovable, but makes loving her very difficult. It's a push-pull thing, a cycle of trial-by-fire testing followed by love and affection. Enter another cancer diagnosis. We thought she'd dodged the bullet in Feb 2008 but it turns out the tumor the doc found and removed was not the original one.
So in October 2009 the original site was located, typed, and radical treatment was recommended. And she didn't tell anyone. She decided to delay. Couldn't make up her mind what to do. And her behavior, her normally high-strung, difficult behavior, became that of someone who was nearly unhinged. I thought it was a bad case of her usual Seasonal Affective Disorder. I asked her to talk to me. And she would, sometimes. But mostly she'd call and babble and cry and when I'd repeat what she'd said to me back to her to ask for clarity she'd get verbally abusive, yelling and asking me why I was saying things like that or putting words in her mouth. She was that... disconnected from what she was saying and doing that she could not remember it 2 minutes afterwards. She got fired from her job and lost her medical plan and her ability to take the medical leave of absence that she should have taken in order to treat her illness and have financial security.
Finally, in February, she started treatment. Not the full treatment the doc wanted, which involved radical surgery and radiation and chemo. But she did start the chemo. For a few weeks. And then quit in March after a few treatments because they made her so sick and was putting her at risk for cardiac arrest. And then she called and told me and our step-sisters that she had a very aggressive form of cancer, and that she wasn't going to do the chemo or surgery or any of the radical/aggressive treatments suggested by her oncologist, and would I please take her daughter when she died.
Of course I said yes, and of course I drove the few hours to see her, and to spend a few days with her. And though some of the time with her was good, some of it was unpleasant. Her outbursts, her way of communicating when frustrated or upset (which was often) felt like verbal assaults. I'd watch her daughter jump and freeze and then run off to do whatever her mother said. Anything to stop the yelling. We talked, and she told me she didn't want me to change my life right now, not yet, that she was doing ok, for now. After a few days I returned home, and I had a guest arrive from out of town, and she tried mending fences with our father, with whom she'd been at odds since her car accident Christmas Day. I researched her cancer, sent her information on recommended treatments that didn't involve surgery or systemic chemotherapy.
And I heard back from a friend about my inquiry about taking custody of my niece. This friend told me that when my sister dies, my niece's father becomes her legal guardian, that he is, in fact still her legal guardian. My sister is legally separated from her husband but there has not been a formal custody agreement, and regardless of whether or not there was one, when she dies, legal custody automatically reverts to him as her natural father. That the only way I'd be able to keep my niece would be if my sister's husband signed her over to me. And she didn't want to hear it.
There are a lot of things she didn't want to hear, didn't want to talk about, but they are things that needed to be said, needed to be addressed. She could pretend that things were going to go the way she wanted, she could pretend that she could keep her daughter from her husband so he wouldn't win the epic war that had been their relationship of a dozen years... but ultimately, I felt it would be damaging to her daughter to tell her that she was going to stay in CA and live with me, only to be taken back East to live with her father, who loves her very much and only recently agreed to let his daughter stay with her mother indefinitely.
So I put it in a letter, and mailed it off -- this reality-check, and it was not well-received. Shortly thereafter, Sister #2 used a photo I took of Sister #1 all bald and curled up in her bed as a poster-child of sort for Relay for Life fundraising. Without asking either of us, and seeing as I'd made the photo available to Sister #2 and a few others without her permission, I accepted what followed as my responsibility. It was a firestorm.
It took me a couple of days to figure out what happened. The different stories I got from my nephew, my father, and my sister made no sense, and in many cases, were technically impossible. But I figured it out, and once I did, I accepted it. All of it. Still am, even as my partner asks me why I take it, why I take the 3am phone calls, why I listen to the yelling and abuse that doesn't give me room to say anything before the call is ended by Sister #3. Only for the phone to ring again, 3 or 30 minutes later, for a new line of invective. She said she never wanted to talk to me again but she keeps calling. Her most recent call was to tell me that our step-mother told my niece that she needed to diet, as she's put on a fair amount of weight the past few months (not surprising given the stressful conditions she's living under) and that it was my fault. I'm not quite sure how that logic works, but somehow it makes sense to her.
My partner says that I am the most loving person he knows and that I do not deserve the abuse being heaped on me. He wants me to disengage further, to remove myself from a situation that makes me so sad, that dims my inner light. He says he's looking forward to answering her next phone call, since she keeps calling the line in is bedroom even though I asked her not to. A deliberate bit of inconsideration on her part, I know.
I do not know what to do. I know that I want to be with my sister. But I know that the price for that privilege is admission to a roller-coaster ride of emotional ups and downs, verbal abuse, irrational behavior. And keeping my mouth shut.
The latter I can probably do. If she can't handle the truth, she can't handle it. But its the roller-coaster ride I can't handle. She thinks we can't handle her being ill. She says that is why she took so long to tell the family, because she didn't think we could handle it. But that is self-deception. We've handled so much -- what's another bout of cancer? Another death? No, she's the one who cannot handle it, and what is more, her inability to handle it makes life unpleasant for everyone around her.
I can handle her having cancer. I can handle knowing that she's a good 3 years into an aggressive form of cancer that has probably spread to her liver and kidneys and bones. I can handle the care-giving. I've done it many times before. I can handle the normal emotional ups and downs of cancer patients, the anger and the sadness and the tears. I know how to be with, really be with others. And I'm not afraid of death and dying.
But what I can't handle -- is the frenetic, boiling, ever-changing emotional states. It's like being pounded by waves while caught in a rip-tide. I feel overwhelmed and afraid of capsizing. I feel like I'm suffocating on her emotion, like I'm choking on it as it fills the room, as she vibrates with it, blares it, assaults everyone around her with it. And whether she lives 3 months, or 6 months, or a year -- I'm not sure I can make the trade-off, pay the blood-price. I can't take abuse. Its like cancer -- insidious, invasive, deadening. I had enough to last me a lifetime already and I just don't want to see if I'm up to enduring the unendurable one more time.
Will I regret not finding a way to placate her and work things out whatever it takes? Possibly. But in the long run, I'll have saved myself the inevitable experience of her instability, rages, and abuses. In the end, I'm the one who is going to survive her, and I'd rather be mentally and emotionally capable of handling the mess she'll leave behind when she dies. I hoped that some how, some way, I could show her that path I've found and walked these past years, the path of inner peace and love and joy. But I can't choose those things and offer myself up denigration and abuse at the same time. So, I guess the place I've arrived at as I've written this down is... I choose me. My mental health. My vitality. And if she wants me to be a part of her life, whatever is left of it, she's going to have to accept that I'm not going to be her whipping boy just because she feels the need to vent her rage at the world at someone. I'm not a masochist, Sister. Find another puppy to kick. This one is staying out of harm's way.
The topic is catastrophic illness. That, and how the temperment of the one who is ill affects both the outcome for themselves and those who love them. And I'm trying to figure out what I can do differently.
We are born. We live. We lose loved ones. And then we die. And I'm cool with that. Really.
I've had two sisters and a step-sister struggle with catastrophic illness. One died, one made a miraculous recovery after being on hospice, and the other... is... complicated.
With the sister who died, she was very headstrong and high-strung. She didn't want to make the changes necessary to recover from her illness. She lacked the patience and the self-control, frankly, and so she died, though a year later than I estimated, mainly because as her condition deteriorated she'd get scared, comply for a few weeks or a couple of months with medical care, and then she'd pull the plug, literally, and go back to a lifestyle that was physically depleting. She would get angry, and cry, and ask why this was happening to her, and I'd get her to a place where she'd acknowledge that she had been neglecting her health and that she was willfully non-compliant with regards to medical care and she'd agree to do what needed doing. And then she'd get to feeling better and revert to her prior way of being. And then she'd get to feeling worse, and she'd cry and beg for help, and get angry and irrational and verbally abusive when she didn't get what she wanted. She pushed people away with one hand and pulled with the other. It was a vicious cycle that last two excruciating years. My only consolation, my only rationalization, is that she loved what she did, and she died doing what she loved.
Sister number Two was put on hospice when she came out of remission and her cancer was found to have metastasized to several places. She was in discomfort, and my step-sister's twin, who is a pharmacist, and my step-mother, who was a home health care nurse, did everything they could to "make her comfortable." They'd lost their grandfather a few years previously after a terribly painful and drawn-out experience, and they didn't want her to suffer. This sister knew how to ask for help, and how to accept it. She was angry, feeling like her life was being stolen from her, etc, but she invited people in. Her church congregation stepped up, brought food and comfort and companionship. Her friends visited. And I visited. And I spoke my truths to her, too. I told her to get up out of bed. Told her that when people are asked what they would do if they were told they have weeks to live they don't say "I'd lay in a hospital bed drugged out of my mind." I told her her life wasn't over, that she had as much time as I had -- today. Get up. Get up. Live. And yeah, maybe saying those things was a bit harsh, and maybe I could have found better ways to say them. But she got up out of that bed, and she lived her life, and she did her chemo again, and she is here now, two years later.
Sister number Three is like sister number One. Headstrong and high-strung. She's never been very good at asking for help and she's very reluctant to accept help. She's also extremely contrarian, and bi-polar or similarly biochemically imbalanced. I wouldn't go so far as to call her mentally ill, though she does have her moments -- she did try to kill herself two years ago last month, and she battles both depression and "fits" of some sort in which she says and does things that are completely unacceptable and often doesn't remember what she said or did during her outbursts. She's lovable, but makes loving her very difficult. It's a push-pull thing, a cycle of trial-by-fire testing followed by love and affection. Enter another cancer diagnosis. We thought she'd dodged the bullet in Feb 2008 but it turns out the tumor the doc found and removed was not the original one.
So in October 2009 the original site was located, typed, and radical treatment was recommended. And she didn't tell anyone. She decided to delay. Couldn't make up her mind what to do. And her behavior, her normally high-strung, difficult behavior, became that of someone who was nearly unhinged. I thought it was a bad case of her usual Seasonal Affective Disorder. I asked her to talk to me. And she would, sometimes. But mostly she'd call and babble and cry and when I'd repeat what she'd said to me back to her to ask for clarity she'd get verbally abusive, yelling and asking me why I was saying things like that or putting words in her mouth. She was that... disconnected from what she was saying and doing that she could not remember it 2 minutes afterwards. She got fired from her job and lost her medical plan and her ability to take the medical leave of absence that she should have taken in order to treat her illness and have financial security.
Finally, in February, she started treatment. Not the full treatment the doc wanted, which involved radical surgery and radiation and chemo. But she did start the chemo. For a few weeks. And then quit in March after a few treatments because they made her so sick and was putting her at risk for cardiac arrest. And then she called and told me and our step-sisters that she had a very aggressive form of cancer, and that she wasn't going to do the chemo or surgery or any of the radical/aggressive treatments suggested by her oncologist, and would I please take her daughter when she died.
Of course I said yes, and of course I drove the few hours to see her, and to spend a few days with her. And though some of the time with her was good, some of it was unpleasant. Her outbursts, her way of communicating when frustrated or upset (which was often) felt like verbal assaults. I'd watch her daughter jump and freeze and then run off to do whatever her mother said. Anything to stop the yelling. We talked, and she told me she didn't want me to change my life right now, not yet, that she was doing ok, for now. After a few days I returned home, and I had a guest arrive from out of town, and she tried mending fences with our father, with whom she'd been at odds since her car accident Christmas Day. I researched her cancer, sent her information on recommended treatments that didn't involve surgery or systemic chemotherapy.
And I heard back from a friend about my inquiry about taking custody of my niece. This friend told me that when my sister dies, my niece's father becomes her legal guardian, that he is, in fact still her legal guardian. My sister is legally separated from her husband but there has not been a formal custody agreement, and regardless of whether or not there was one, when she dies, legal custody automatically reverts to him as her natural father. That the only way I'd be able to keep my niece would be if my sister's husband signed her over to me. And she didn't want to hear it.
There are a lot of things she didn't want to hear, didn't want to talk about, but they are things that needed to be said, needed to be addressed. She could pretend that things were going to go the way she wanted, she could pretend that she could keep her daughter from her husband so he wouldn't win the epic war that had been their relationship of a dozen years... but ultimately, I felt it would be damaging to her daughter to tell her that she was going to stay in CA and live with me, only to be taken back East to live with her father, who loves her very much and only recently agreed to let his daughter stay with her mother indefinitely.
So I put it in a letter, and mailed it off -- this reality-check, and it was not well-received. Shortly thereafter, Sister #2 used a photo I took of Sister #1 all bald and curled up in her bed as a poster-child of sort for Relay for Life fundraising. Without asking either of us, and seeing as I'd made the photo available to Sister #2 and a few others without her permission, I accepted what followed as my responsibility. It was a firestorm.
It took me a couple of days to figure out what happened. The different stories I got from my nephew, my father, and my sister made no sense, and in many cases, were technically impossible. But I figured it out, and once I did, I accepted it. All of it. Still am, even as my partner asks me why I take it, why I take the 3am phone calls, why I listen to the yelling and abuse that doesn't give me room to say anything before the call is ended by Sister #3. Only for the phone to ring again, 3 or 30 minutes later, for a new line of invective. She said she never wanted to talk to me again but she keeps calling. Her most recent call was to tell me that our step-mother told my niece that she needed to diet, as she's put on a fair amount of weight the past few months (not surprising given the stressful conditions she's living under) and that it was my fault. I'm not quite sure how that logic works, but somehow it makes sense to her.
My partner says that I am the most loving person he knows and that I do not deserve the abuse being heaped on me. He wants me to disengage further, to remove myself from a situation that makes me so sad, that dims my inner light. He says he's looking forward to answering her next phone call, since she keeps calling the line in is bedroom even though I asked her not to. A deliberate bit of inconsideration on her part, I know.
I do not know what to do. I know that I want to be with my sister. But I know that the price for that privilege is admission to a roller-coaster ride of emotional ups and downs, verbal abuse, irrational behavior. And keeping my mouth shut.
The latter I can probably do. If she can't handle the truth, she can't handle it. But its the roller-coaster ride I can't handle. She thinks we can't handle her being ill. She says that is why she took so long to tell the family, because she didn't think we could handle it. But that is self-deception. We've handled so much -- what's another bout of cancer? Another death? No, she's the one who cannot handle it, and what is more, her inability to handle it makes life unpleasant for everyone around her.
I can handle her having cancer. I can handle knowing that she's a good 3 years into an aggressive form of cancer that has probably spread to her liver and kidneys and bones. I can handle the care-giving. I've done it many times before. I can handle the normal emotional ups and downs of cancer patients, the anger and the sadness and the tears. I know how to be with, really be with others. And I'm not afraid of death and dying.
But what I can't handle -- is the frenetic, boiling, ever-changing emotional states. It's like being pounded by waves while caught in a rip-tide. I feel overwhelmed and afraid of capsizing. I feel like I'm suffocating on her emotion, like I'm choking on it as it fills the room, as she vibrates with it, blares it, assaults everyone around her with it. And whether she lives 3 months, or 6 months, or a year -- I'm not sure I can make the trade-off, pay the blood-price. I can't take abuse. Its like cancer -- insidious, invasive, deadening. I had enough to last me a lifetime already and I just don't want to see if I'm up to enduring the unendurable one more time.
Will I regret not finding a way to placate her and work things out whatever it takes? Possibly. But in the long run, I'll have saved myself the inevitable experience of her instability, rages, and abuses. In the end, I'm the one who is going to survive her, and I'd rather be mentally and emotionally capable of handling the mess she'll leave behind when she dies. I hoped that some how, some way, I could show her that path I've found and walked these past years, the path of inner peace and love and joy. But I can't choose those things and offer myself up denigration and abuse at the same time. So, I guess the place I've arrived at as I've written this down is... I choose me. My mental health. My vitality. And if she wants me to be a part of her life, whatever is left of it, she's going to have to accept that I'm not going to be her whipping boy just because she feels the need to vent her rage at the world at someone. I'm not a masochist, Sister. Find another puppy to kick. This one is staying out of harm's way.
posted by Kayar Silkenvoice at 1:30 AM
3 comments
