"It is up to us
to hallow Creation,
to respond to Life
with the fullness of our lives.
It is up to us
to meet the World,
to embrace the Whole
even as we wrestle
with its parts.
It is up to us
to repair the World
and to bind our lives to Truth.
Therefore we bend the knee
and shake off the stiffness that keeps us
from the subtle
graces of Life
and the supple
gestures of Love.
With reverence
and thanksgiving
we accept our destiny
and set for ourselves
the task of redemption."
Author: Rami M. Shapiro
Saturday, July 20, 2013
Wednesday, July 17, 2013
The voice of pain
I'm still surprised at myself for writing on the web where anyone can read this. I'm not publicizing this blog, but someone will stumble upon it. I'm not writing for sympathy or advice. I'm writing for my own sanity. I'm writing so there is an outlet for all my pain, and maybe by giving that pain a voice, I can find a way to live with it.
Each day is difficult. The tears come every day; not just tears, but uncontrolled hysteria. And when it finally dies down, there is no resolution or acceptance.
There is nobody to be angry at. There is no one to blame. There is no comfort yet in memories, in religion, in each new sunrise. Each day is a reminder of my loss.
Each day is difficult. The tears come every day; not just tears, but uncontrolled hysteria. And when it finally dies down, there is no resolution or acceptance.
There is nobody to be angry at. There is no one to blame. There is no comfort yet in memories, in religion, in each new sunrise. Each day is a reminder of my loss.
Tuesday, July 16, 2013
A blog?
I didn't think I would blog about this. It's private, it's personal, it's painful. But I'll lose my mind if I don't somehow process my feelings, and writing seems like the best way. This isn't going to be easy.
My marriage was perfect. My husband wasn't - he had his flaws, and I loved him completely and unconditionally. In 7 years of marriage, we never fought. We had disagreements, but they always ended in laughter. Together, we were amazing. We had the sort of love that inspires books and movies - though we as individuals were quite ordinary.
He completed me. He brought me happiness. He was my biggest fan, and my most honest critic. He loved me despite all my faults and frailty. He taught me to face my fears, to speak my mind, to be myself. He thought I was beautiful. He made me feel safe.
Life was wonderful. And then, it wasn't.
The nurse called me back to the consultation room where I waited for the surgeon. He came in, pulled up a chair, put his hand on my knee and said, "It's cancer, and it's advanced."
I asked, "Is it operable?"
"No."
I asked, "Chemo?"
"No."
I asked, "Are you telling me that my husband is dying?"
"Yes."
He patted my knee, said "I'm sorry", and left the room. And just like that, life as I knew it ended.
For five and a half weeks, I stayed with him in the hospital. Sleeping on a cot. Running home for an hour most days to "take care of things", and racing back to his side.
It was a nightmare. Two major surgeries. 7 procedures requiring general anesthesia. A sepsis infection. Two rounds of chemo. A perforated stomach. A blood transfusion. The failing of his GI system. The inability to process any foods, and the restrictions of a liquid diet. One setback after another. Tubes, and bags, and discomfort. Fluids and smells. Pain and the disorientation of "chemo brain".
He took it all like a champ. He kept his sense of humor. He maintained his gratitude. He accepted what I could never accept.
I cried, I screamed, I prayed. I held his hand when they changed his wound dressing, and I hit the morphine button to try and alleviate his pain. I held my tears when I saw what they did to his body, only giving into hysteria when he was sleeping. I helped him do the things he could no longer do for himself - brought him beverages, bathed him, held the bucket when he vomited and the urinal when he needed it.
His doctors were wonderful. The nurses were more wonderful. They treated him with respect and compassion. They hugged me when I cried. They tried to make the nightmare more bearable, but of course they failed.
Every time we had a tiny glimmer of hope - not for a cure, but for more time - it was dashed. I wanted to bring him home, but the ruptured stomach made that impossible. So, when the harsh reality that we couldn't buy, borrow, or steal more time came, we moved to hospice house.
I took my 48 year old husband to hospice house. It was unthinkable. That afternoon the social worker asked, "how do you feel about this move" in her perky social worker voice. I replied, "I'm taking my husband somewhere to die. How the fuck am I supposed to feel?" That was my last conversation with the social worker.
So we moved to hospice. And the room was large, and his bed was more comfortable, and the setting was more restful and serene. And I hated it. I didn't want to be there. We were moving towards death.
And then the strangest thing happened. He started to get better. Outside of the hospital, he was actually able to rest. There were no more invasive tests, surgeries or chemo, and he was able to regain strength. Not enough to go home, but enough to have some "good time".
A few days after we moved to hospice, one of his doctors went on vacation for two weeks. When he came back he blurted out, "I'm so happy to see you, I thought you would be dead.". But no - he lived.
He made jokes. He thanked his caregivers. He started to write his own obituary. He comforted me. He gave me advice. He loved me. And I loved him.
I hope that I made that time easier for him. I felt so inadequate. I wanted to save him. I wanted to heal him. I wanted so much to bring him home. There was so little that I could do for him. I tried to care for him, but until the end he still cared for me.
We stayed together in hospice house for 9 weeks and two days. The last three days were hell. I knew he was going. He knew he was going. It was unbearable. The last night was excruciating. I knew we were near the end. I knew what his wishes were, and I didn't want him to suffer. Pushing that morphine button was torture. I knew it was helping him. I knew it was keeping him from pain. I knew it was killing him.
His very last words were "love you". For the last hour, I climbed into his bed and held him in my arms. In the end, he squeezed my hand, took two more breathes and was gone. My beloved was gone.
It has been almost three months. Everyone tells me that it will take time. That with time the pain will subside. That with time, I'll find some new normal. That I will be happy again. Maybe. But, with his last breath, my life ended. I didn't die, but my world was destroyed.
I have an incredibly supportive family. I have the most amazing and supportive friends. And yet, I come home every night and I cry. I try to heed his advice. I try to be happy, I try to live without fear. I try not to waste the life that I still have. I feel an obligation to live because he wasn't given that opportunity. In my grief and despair, I feel that I am failing.
The pain doesn't stop. The nightmare doesn't end.
My marriage was perfect. My husband wasn't - he had his flaws, and I loved him completely and unconditionally. In 7 years of marriage, we never fought. We had disagreements, but they always ended in laughter. Together, we were amazing. We had the sort of love that inspires books and movies - though we as individuals were quite ordinary.
He completed me. He brought me happiness. He was my biggest fan, and my most honest critic. He loved me despite all my faults and frailty. He taught me to face my fears, to speak my mind, to be myself. He thought I was beautiful. He made me feel safe.
Life was wonderful. And then, it wasn't.
The nurse called me back to the consultation room where I waited for the surgeon. He came in, pulled up a chair, put his hand on my knee and said, "It's cancer, and it's advanced."
I asked, "Is it operable?"
"No."
I asked, "Chemo?"
"No."
I asked, "Are you telling me that my husband is dying?"
"Yes."
He patted my knee, said "I'm sorry", and left the room. And just like that, life as I knew it ended.
For five and a half weeks, I stayed with him in the hospital. Sleeping on a cot. Running home for an hour most days to "take care of things", and racing back to his side.
It was a nightmare. Two major surgeries. 7 procedures requiring general anesthesia. A sepsis infection. Two rounds of chemo. A perforated stomach. A blood transfusion. The failing of his GI system. The inability to process any foods, and the restrictions of a liquid diet. One setback after another. Tubes, and bags, and discomfort. Fluids and smells. Pain and the disorientation of "chemo brain".
He took it all like a champ. He kept his sense of humor. He maintained his gratitude. He accepted what I could never accept.
I cried, I screamed, I prayed. I held his hand when they changed his wound dressing, and I hit the morphine button to try and alleviate his pain. I held my tears when I saw what they did to his body, only giving into hysteria when he was sleeping. I helped him do the things he could no longer do for himself - brought him beverages, bathed him, held the bucket when he vomited and the urinal when he needed it.
His doctors were wonderful. The nurses were more wonderful. They treated him with respect and compassion. They hugged me when I cried. They tried to make the nightmare more bearable, but of course they failed.
Every time we had a tiny glimmer of hope - not for a cure, but for more time - it was dashed. I wanted to bring him home, but the ruptured stomach made that impossible. So, when the harsh reality that we couldn't buy, borrow, or steal more time came, we moved to hospice house.
I took my 48 year old husband to hospice house. It was unthinkable. That afternoon the social worker asked, "how do you feel about this move" in her perky social worker voice. I replied, "I'm taking my husband somewhere to die. How the fuck am I supposed to feel?" That was my last conversation with the social worker.
So we moved to hospice. And the room was large, and his bed was more comfortable, and the setting was more restful and serene. And I hated it. I didn't want to be there. We were moving towards death.
And then the strangest thing happened. He started to get better. Outside of the hospital, he was actually able to rest. There were no more invasive tests, surgeries or chemo, and he was able to regain strength. Not enough to go home, but enough to have some "good time".
A few days after we moved to hospice, one of his doctors went on vacation for two weeks. When he came back he blurted out, "I'm so happy to see you, I thought you would be dead.". But no - he lived.
He made jokes. He thanked his caregivers. He started to write his own obituary. He comforted me. He gave me advice. He loved me. And I loved him.
I hope that I made that time easier for him. I felt so inadequate. I wanted to save him. I wanted to heal him. I wanted so much to bring him home. There was so little that I could do for him. I tried to care for him, but until the end he still cared for me.
We stayed together in hospice house for 9 weeks and two days. The last three days were hell. I knew he was going. He knew he was going. It was unbearable. The last night was excruciating. I knew we were near the end. I knew what his wishes were, and I didn't want him to suffer. Pushing that morphine button was torture. I knew it was helping him. I knew it was keeping him from pain. I knew it was killing him.
His very last words were "love you". For the last hour, I climbed into his bed and held him in my arms. In the end, he squeezed my hand, took two more breathes and was gone. My beloved was gone.
It has been almost three months. Everyone tells me that it will take time. That with time the pain will subside. That with time, I'll find some new normal. That I will be happy again. Maybe. But, with his last breath, my life ended. I didn't die, but my world was destroyed.
I have an incredibly supportive family. I have the most amazing and supportive friends. And yet, I come home every night and I cry. I try to heed his advice. I try to be happy, I try to live without fear. I try not to waste the life that I still have. I feel an obligation to live because he wasn't given that opportunity. In my grief and despair, I feel that I am failing.
The pain doesn't stop. The nightmare doesn't end.
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