Friday, July 29, 2011
My book
I think I'm going to write a book about a girl in the last [weeks? month/s?] of her sexual addiction before she goes to rehab.
Sunday, June 5, 2011
The gall of so-called Christians
Over the years there's been this super rude and annoying commenter who posts passages from the Bible in the comment section. I moderate comments to spare the reader his crap. I rarely read the comments and just delete them. But I was curious about this one that he recently posted to comment on my story of my dying father.
Luke apparently talks about some king that was sent to hell and some beggar that went to heaven and the king begs for water because there's none in hell.
This is as equally appalling and non-Christian behavior as those dumbass protesters who stand at the funerals of fallen soldiers.
My father was a Christian. He taught Lutheran Sunday School for years. He belonged to Lutheran churches all over the world. He made us kids attend church with him. When I was 18, I told him I couldn't continue to attend because I didn't believe the words or practices. He encouraged me to find faith. My father donated to causes of justice, helped disadvantaged populations, and always tried to live life under Christian principles: love they neighbor, do unto others as you'd have unto you, espouse peace not war, etc. He was revered in the community for his sage advice, assistance to any worthy cause at any time needed, and passionate friendship.
It's Christians like you that give religion a bad name. How about you read up on your principles? Matthew 7 for instance. A good reminder.
Frankly, I prefer to interpret my dad's vision from the other side as a fabulous cocktail party out in the woods. Kegs and shakers abound - who needs water?
"...he said that there's no water at the party and could we get him some."
Compare with Luke 16:19-31. Especially v.24
Luke apparently talks about some king that was sent to hell and some beggar that went to heaven and the king begs for water because there's none in hell.
This is as equally appalling and non-Christian behavior as those dumbass protesters who stand at the funerals of fallen soldiers.
My father was a Christian. He taught Lutheran Sunday School for years. He belonged to Lutheran churches all over the world. He made us kids attend church with him. When I was 18, I told him I couldn't continue to attend because I didn't believe the words or practices. He encouraged me to find faith. My father donated to causes of justice, helped disadvantaged populations, and always tried to live life under Christian principles: love they neighbor, do unto others as you'd have unto you, espouse peace not war, etc. He was revered in the community for his sage advice, assistance to any worthy cause at any time needed, and passionate friendship.
It's Christians like you that give religion a bad name. How about you read up on your principles? Matthew 7 for instance. A good reminder.
Frankly, I prefer to interpret my dad's vision from the other side as a fabulous cocktail party out in the woods. Kegs and shakers abound - who needs water?
Friday, May 27, 2011
180
It's six months sobriety today. I can't even say "one day at a time". I have no idea when a day ends or begins. Time is screeeaming by. But it's time I start writing some of it down or I'll forget. They say the first year of sobriety is a haze. I've heard some people say they don't even remember it. I'm kind of banking on that in a way. These six months have been rather fucked up.
But I do and will want to remember.
I have this whole story developing. It started back in 2007, when he showed me the new property they'd bought in anticipating of building their real retirement home. Just before I went to Paris for grad school.
But I can't seem to write it fast enough for all the thoughts and feelings that come up. So, I guess there will be tandem tellings.
I flew out on March 30. I had just started fighting a cold. I landed and a family friend picked me up at the airport and brought me back to her house. I was so frustrated to have come all the way, with time tick tick tick draining away, and I couldn't even go to my parents' house. I was contagious. Last thing I needed was to get germs into the house.
On March 31 the doctor said it was a sinus infection and gave me meds. I cried in her office. She was actually a nurse practitioner or something who worked with one of the doctors that had treated my father. I cried because I desperately wanted to be with my family. I cried because I had a bad fever. She told me it wouldn't affect my dad (which now seems logical - how would a man dying of cancer get a sinus infection? As if it would somehow speed things up or make them worse. Or somehow, my germs would overpower the chemo, the radiation treatment, and all the drugs). And likely I wouldn't affect my mom and sister because I wasn't contagious. I could just wear a mask and wash my hands. But, she said, clearly I needed to be with them and that was much more important than germs.
On April 1 it was 24 hours and I went to the house. I quit smoking this day.
It was such a relief to be there. I wore the mask the first two days because we all thought that his immune system was so weak that he could somehow catch a sinus infection - and how disastrous that would be. Funny to look back on that now. As if we were still in fighting mode. I guess we were.
Dad was still in his bed. My sister didn't go back to Minneapolis like she had planned. In fact, for the next two weeks we really didn't leave the house at all. My sister ran to town one day. My mother another day.
It was gradual and it was quick. He changed from one day to the next. It came faster than anticipated and dragged on painfully. By Saturday April 2 we had moved from pill medication to liquid:
Sunday April 3:
These were not private diary posts, but communications to family and friends. My father lost speed and steam and energy and life very quickly over time. It was just too hard for me to say it directly. And the backrubs were constant. It seemed that the tumor on his left kidney was causing severe pain and it helped to press on it. My sister, with the claw hands, was best at the deep massage. I was better at a more reiki type of activity, with my hands centered on his back as he sat, meditating on a cool light-blue light spilling throughout his body, cooling the firey heat of the cancer. My aunt commented that she thought I looked like I was guiding him from a cocoon into a butterfly.
Meds were the quarters for the day: morning, noon, afternoon, night. It was ABC med 4 times a day, DEF med 2 times, GHI at night, JKL as needed but only every 4 hours. There was not only the tumor on his left kidney but the cancer that had appeared to spread along the intestine below the stomach, which caused the appearance of a "blockage", thus complicating any intake of liquids or food for the past several months and also leading to the quick switch to liquid meds. The liquid versions of his pills were foul tasting (apparently - not that I tried his ketamine - thank god for being in AA! I remember hearing about the raver kids in college totally getting off on Special K... I can only imagine the hell that would have been if I decided to party), so we added apple juice to the mix, and later orange gatorade. And, later, when even liquid wouldn't stay down or would cause too much nausea, liquid drops under the tongue. Still the same morning, noon, afternoon, and night.
Time disappears. Time is not going outside for a walk with the dogs around the yard because you forget who's tagged in for med time. Time is give the meds now, find something to do for four hours, give the next round of meds. Check dad. Rub dad. Eat something. Watch the eagles. Talk about paperwork that's gotta get done. More meds.
Monday April 4:
This was a crucial decision and discussion. Most interestingly, is how we all sat with the NP in dad's room and talked it through - dad including. It was clearly a major step in the process. Up the pain meds, reduce the ability to interact.
Tuesday, April 5:
Wednesday, April 6:
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It was Monday when the nurse started having discussions with us about timelines and provided us some literature on the dying process. My sister and I, internet savvy and hounds for knowledge, had already looked up all of these things online. It still didn't seem real. Although, we watched for the symptoms. While we didn't have all of the signs play out, we did notice
Signs of the preactive phase of dying:
-increased restlessness, confusion, agitation, inability to stay content in one position and insisting on changing positions frequently (exhausting family and caregivers)
-increased periods of sleep, lethargy
-beginning to show periods of pausing in the breathing (apnea) whether awake or sleeping
Signs of the Active Phase of Dying
-dramatic changes in the breathing pattern including apnea, but also including very rapid breathing or cyclic changes in the patterns of breathing (such as slow progressing to very fast and then slow again, or shallow progressing to very deep breathing while also changing rate of breathing to very fast and then slow)
-inability to swallow any fluids at all (not taking any food by mouth voluntarily as well)
-patient breathing through wide open mouth continuously and no longer can speak even if awake
-patient's extremities (such as hands, arms, feet and legs) feel very cold to touch
-jaw drop; the patient's jaw is no longer held straight and may drop to the side their head is lying towards
-mottling
My sister couldn't stop with the mottling. It was her one sign. She'd over-fiddle with his catheter bag, working gravity to help pull more urine out of his bladder. We had had a bad night when the cath had gotten plugged with mucus and he wet himself. I think more than anything my father hated bodily fluids for some reason. He could mow the lawn in 80F weather on my grandparents' farm, sweat buckets, joke around and rub his sweaty face on yours. But there was something very undignified for him in pee. After this episode, my sister couldn't stop fiddling. She even roped me in to the gravity game.
And if it wasn't the cath bag, it was mottling. "Look at his feet." He would sit on the edge of his bed for hours (before we got the way more comfortable hospital bed that could be raised up and lowered, and could prop his knees up). He'd sway, but not want to lie down. His feet would turn purplish and get cold. But he loved his bed. He paid like thousands of dollars for it. So, it took us a while to figure out that a hospital bed would be better. He only stayed in it 5 days.
The mottling. It would come and go. Toward the last days it crept up more greatly. On the morning that he died, it crept up all the way to his bald head.
It was around this time that he also started to give us glimpses. The hospice nurse called it a gift. His hallucinations or visions. Whatever you want to call them. Walking between death and life. Seeing the afterworld. Or, if you prefer, his brain started misfiring dreams.
4/7/2011, 2:11pm:
Sitting with him after the Fed Ex truck left.
He said, "Trucks can only go one-way on one-way streets."
I said, "Yes, there's only driving one-way on the one-way streets. You can't drive both ways on a one-way street."
He said, "There are only one-way streets. Let me know if you want me to drive/take you there/show you/you need to get there." (Something along those lines, as if he could drive the one-way streets or would know them. I had no idea what he was talking about. I was thinking that he was remembering driving the streets of Toledo, Spain.). "Can only go one-way so it takes a while."
[Then I realized he might have meant the path to the next life.]
He continued, "If you go à pied you can go both ways." [à pied / a pie = on foot]
I said: [in French and then Spanish:] "Si tu est a pied, tu pouvouis marcher. Si tu estas a pie, tu puedes caminar. If you go on foot you can walk (it).... "
I said: "Remember the streets in Toledo, Spain? Very narrow one-way streets. But beautiful. I bet the one-way streets are beautiful there. Are they beautiful?"
Dad went back to sleep and we helped him lay down.
One night the pain meds ran out. Because they'd be one hell of a hot commodity on the market, we weren't given the passcode to set him up with a new bag. It was about midnight. Midnight in the middle of the countryside. The unlucky hospice nurse, who we saw about 4 nights in a row for a bad luck stretch, had to drive 45 minutes to get to us. (This wasn't troubling, because Dad was a DNR - do not resuscitate. It just meant that we would worry that he wouldn't get his pain meds, the machine would continue beeping, and our sleepless night would now be punctuated with more stress.) We paused his pain meds for a bit while we waited on her arrival. When she got there, she had to walk through the instructions to set it up. And while my sister and I stood by her side to help, we were all treated to a message from the other world:
4/7/2011, midnight, Dana Hospice Nurse visiting, squatting at side of bed, working on laptop. Dad just bolted up and with a smile and giddy almost like a schoolgirl, glowing eyes asked each one of us:
"Are you my boyfriend?
Are you my boyfriend?
Who's my boyfriend?
"There's a party. I want to leave this world and go to the party. Can I leave this world and go to the party?"
- My sister and I replied yes. Of course.
Then, he said that there's no water at the party and could we get him some.
He turned to me and said "mamoosh babcrushka with ice" We asked him to clarify because we thought he said with crushed ice. He repeated "mamoosh babcrushka with ice".
Then, he lied back down.
I was simultaneously elated and terrified. When the nurse had finished hooking up the pain meds, we went into the hall and whispered about what just happened. Whispered, because, while my father had suffered from some hearing loss due to flying military airplanes for much of his career, toward the end of life, he could hear a pin drop 2 rooms over.
I started to cry, while smiling. (This actually happened frequently the day after a night shift.) This was an incredibly beautiful and moving moment, but from this night onwards I was constantly afraid that I'd be alone on night duty and have to deal with another spooky communication like that. I also felt more and more sensitive to the creaks in the house, which only happened in his bedroom or in the living room where we slept. I could sense death walking the halls, standing on the porch outside, and hovering in my dad's bedroom.
I don't remember which day we realized that we needed to divide ourselves up. We'd been doing things as the 3 of us: sitting by his side, providing meds, making dinner. We realized at some point, I think his sister suggested it to me and I spoke it aloud to my sister and mom, that it would help us all more if we split up efforts so we weren't wearing ourselves out.
It was around this point, too, that we decided we needed take the counsel: tell your loved one it's okay to let go. Individually, we spent some time with him and said our goodbyes. I told him that I knew we'd known each other in previous lives and that we'd know each other again. I told him that I knew he'd always be with me. I told him that I'd always loved his hands - long, lean fingers with sturdy, flat nails. I told him that I loved him and would always love him. And, I held his hand. And, his glazed eyes shed one small tear out of the left side. And, he said, "L, I love you, too." And, I will always always always carry that.
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Saturday, April 9:
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Riddle of the time of passing
Me: Dad, we're done with meds. You can rest now.
Dad: I'll rest after the celebration of the sneeze and the golden birthday. After we have dinner. Now, let's get on with this process... (looking at the stomach pump, the pain med pump, the bedside commode, the garbage bin)
Me, searching on Google finding nothing, walking the dogs over their land, thinking and thinking: What's a celebration of a sneeze? "Bless you"... Sunday? ...Who's got a golden birthday in April? My cousin's baby turns 1 year old on 4-10-11, maybe it's a mix up: 1 on 4-11-11?
From the death bed of my father
Dad (looking at the floor between he and my sister, staring off into the distance; as I walk up to his bedside): Look out for the pathway.
Me: Am I on it?
Dad: Almost.
My sister: Am I on it?
Dad: Perhaps.
I think it was over the weekend that we decided, with some thought and little fanfare that we'd remove the TPN. At the time, while I wasn't feeling impatient, I was feeling overly sensitive to my father's pain. If keeping him on TPN was causing him to suffer more, if it prolonged or extended the dying process, it made no sense to me. And I knew this. As a family, we had already talked to each other about the "if we end up in a coma" decision - pull the plug. We had the option to ween him or stop providing it. I was prepared to stop altogether.
I was ready for this because my father was not my father any longer. He was a shell. Once I had said my good-byes, I knew that he was crossing over more and more, and what we were left to do was care for the vessel he had needed and used. We needed to guide it as gently as possible to a still place so he could use the remaining energy and focus to get out of it. Discontinuing TPN allowed the body to chart its own natural course, freeing the spirit from the veiny bonds.
I guess my sister and mom weren't as ready so we decided to ween. That only lasted a day though because no one was interested in staying up one hour later to start the TPN or waking up an hour earlier to stop it. And, the way our brains were working, there wasn't an option to change the process and introduce it during the day.
After we stopped the TPN, his urine output continued steadily, which was shocking in a way. Nothing going in. Why is it coming out? And, oddly, the left kidney was being pinched by a tumor and the right kidney was his bad one, so how on earth was it happening?
He was a skeleton when he died. My sister said he looked like a concentration camp victim. When the nurse came to bathe him again, or when we wanted to freshen him up to prevent bed sores, we would roll him on his side. It was painful for him so I tried to make it light as I leaned over and held his chest, arms, and face to me, "I'm the lucky daughter. I get the special hugs today." But his body was so brittle and bony. I hated that it caused him pain.
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Sunday April 10:
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His friends and family sent so many good words. We read many of them in the beginning, but over time he wasn't interested or refused. I think he was regretful and wanted to hold on. He had been fighting the cancer for so long and was ready to fight more. Just that the cancer, which was made of his own body, had the same will. I think after a time the words hurt him and tied him more to this world, so he refused to hear them. And, they were sweet:
I understand you have filed your flight plan and that the tower has cleared you for take off. This will be your flight of a lifetime and I know that a happy landing awaits. I am so glad to be your friend. Know that we have your "six" and that friendship never ends.
I love you.
Charles Z.
I had night duty on Monday, April 11. I had feared it the Saturday, 9th. But I used the AA mantra "I'm turning it over to you. I'm turning it over to you." And asked my Higher Power for all the strength I could summon to brave the night. Monday night wasn't scary. Death wasn't clamoring. It wasn't a bull impatiently clawing at the dirt. It wasn't haunting. It was, instead, nearby. Death was watching now, with a lazy eye, disinterested with the torment my father's body was facing. Disinterested, but not unaffected.
My sister had slept in his room the night before, in an uncomfortable chair and position. So, I pulled the more comfy chair up, grabbed an ottoman, and propped up next to his bed with a blanket wrapped around me, my hand holding his.
His breathing was more difficult now. And the death rattle increased tremendously. Supposedly it's supposed to be more discomforting to us alive people than to the dying, but I disagree. My father tried with might to sit up a few times to cough it up. And when it bothered him, I hit the pain med button. I hit it as often as I could and sometimes timed the 15-minute intervals so I could preempt the complication. For some reason, at the time, my sister felt negatively about that action and choice of mine, but the hospice nurse the next day indicated it was appropriate to get ahead of the pain. Every 15 minutes. All night. I think it was one of the longest nights of my life. But it meant probably the most of anything in my life.
My sister had the night of April 12. He wasn't as bad. His breathing was still more inconsistent but the rattle had subsided quite a lot from what we hoped was the atropine finally working.
The morning of the 13th, I woke up from the couch and relieved my sister at about 7:30am. I told her to go downstairs to sleep, but she was stubborn and said no. We started the coffee. His breathing was raspy, louder, almost demanding something. The hospice nurse called to check in. We planned to see her in the afternoon. I got on the internet, looking for some good, magic words. A poem perhaps. Something to read to him to help him let go, send him on his way. I stopped at "On Death" by Kahlil Gibran and thought I should read this later on in the day. My mom had woken up, opened the blinds in his bedroom, the sun was soft, bright spring. She opened the window to let the birds' songs in and sat by my dad's side and my sister was on his other side. I put the laptop down and went to the room, and stood at the foot of his bed. My sister stood up and made the motions to cleanse his chi, floating her hands above his body, sweeping, sweeping. I grabbed the stool and sat down, holding his feet, his cold feet, in my hands. The mottling was visible up on his face.
I got up and got my camera - I had been taking photos throughout - and snapped a few. I sat back down on the stool and held his feet. My sister reached her hand across to his chest. His breathing had slowed. We sat in silence, holding him. She reached her hand over to his chest again and felt for a heartbeat. I watched him. In the quickest instance, I saw a light, white swirl like smoke tendrils above his belly. My sister stood up and reached over to his heart again.
We didn't really know what to do. We sat for a few minutes. And then, we decided to call the hospice nurse. As I got up to call, I looked out the window and she was pulling up. She came into the bedroom, listened with the stethoscope. "Are you sure?" I asked her.
She left us and did some work in the kitchen. I closed the bedroom door and created a sacred space, cleansed his chakras, closed the space. Mom decided what he'd wear for the cremation. I took photos. We called the funeral home. The hospice nurse waited. They put him on the gurney, leaving his face uncovered. We followed him out. They lifted him into the hearse (that was a PT Cruiser). We kissed his forehead. The hospice nurse left.
Wednesday, April 13:
But I do and will want to remember.
I have this whole story developing. It started back in 2007, when he showed me the new property they'd bought in anticipating of building their real retirement home. Just before I went to Paris for grad school.
But I can't seem to write it fast enough for all the thoughts and feelings that come up. So, I guess there will be tandem tellings.
I flew out on March 30. I had just started fighting a cold. I landed and a family friend picked me up at the airport and brought me back to her house. I was so frustrated to have come all the way, with time tick tick tick draining away, and I couldn't even go to my parents' house. I was contagious. Last thing I needed was to get germs into the house.
On March 31 the doctor said it was a sinus infection and gave me meds. I cried in her office. She was actually a nurse practitioner or something who worked with one of the doctors that had treated my father. I cried because I desperately wanted to be with my family. I cried because I had a bad fever. She told me it wouldn't affect my dad (which now seems logical - how would a man dying of cancer get a sinus infection? As if it would somehow speed things up or make them worse. Or somehow, my germs would overpower the chemo, the radiation treatment, and all the drugs). And likely I wouldn't affect my mom and sister because I wasn't contagious. I could just wear a mask and wash my hands. But, she said, clearly I needed to be with them and that was much more important than germs.
On April 1 it was 24 hours and I went to the house. I quit smoking this day.
It was such a relief to be there. I wore the mask the first two days because we all thought that his immune system was so weak that he could somehow catch a sinus infection - and how disastrous that would be. Funny to look back on that now. As if we were still in fighting mode. I guess we were.
Dad was still in his bed. My sister didn't go back to Minneapolis like she had planned. In fact, for the next two weeks we really didn't leave the house at all. My sister ran to town one day. My mother another day.
It was gradual and it was quick. He changed from one day to the next. It came faster than anticipated and dragged on painfully. By Saturday April 2 we had moved from pill medication to liquid:
Sorting out the routine of pain meds, stomach pump, TPN, and addressing nausea has been challenging with an ever-changing landscape, but we've been managing to go with the flow with humor and cooperation. Dad was having some challenges with the oral solid pills that treat nausea, pain, and inflamation. We've switched over to liquid form of those now and they seem to be more palatable. We had a nice visit from a Hospice nurse today to check in on things and truly appreciate their kindness, patience, and jovial attitude.
Dad's been resting quite a lot throughout the day and night while struggling with managing the pain and nausea, but he's not lost his sense of humor.
We joke that the TPN in its long, flat backpack looks like a pizza box.
"Your pizza, sir," I said.
"Monsieur," my sister said.
"What?" Dad asked. "They serve pizza in France?"
Sunday April 3:
I took the night shift to give Mom and my sister a break. Dad and I had frequent interactions as he struggled to find comfortable positions for sleeping to counter the pain and nausea. We think that today some of the nausea has abated due to the introduction of a different med. The pain is also being met with continued meds and it all seems to help.
We woke up this morning to the rainy thundersnow sleet, with dogs taking cover, and slush ice covering the eastern facing kitchen . While it was a grey day, it felt kind of Spring-filled as we watched some of the snow melt in the front yard to show grasses underneath. We were also treated to a pair of sandhill cranes flying over the house, which Dad smiled at hearing.
I won't speak for the rest of my family, but it seems to me an interesting situation as life is now punctuated by hourly medications and not by the names of days or numbered dates. Memory loss can be contagious, as I tell my sister that I'll remember to ask Mom about something, forget what that thing was, ask my sister, she forgets, and we all end up giggling on Mom's bed for a while. We have a delicate power to enjoy humor in the little details and absurdities of our own activities.
Last night, he was excited about brushing his teeth so we maneuvered him into the bathroom and returned him to bed with a bright smile. Today, he did the same, although it took a bit more energy out of him so we might be bringing the bathroom to him next time -- bedside service!
Dad's still showing his wit now and again with wise cracks or concurring with one side or the other in jokes (ahem, my sister won the hospital-corner contest in the bed-making today), although he does seem to be lacking a bit of steam. We're grateful for the quiet moments when we're able to provide some comfort through reading aloud or a back rub, and are fortunate for the chance to be with him - and be together.
These were not private diary posts, but communications to family and friends. My father lost speed and steam and energy and life very quickly over time. It was just too hard for me to say it directly. And the backrubs were constant. It seemed that the tumor on his left kidney was causing severe pain and it helped to press on it. My sister, with the claw hands, was best at the deep massage. I was better at a more reiki type of activity, with my hands centered on his back as he sat, meditating on a cool light-blue light spilling throughout his body, cooling the firey heat of the cancer. My aunt commented that she thought I looked like I was guiding him from a cocoon into a butterfly.
Meds were the quarters for the day: morning, noon, afternoon, night. It was ABC med 4 times a day, DEF med 2 times, GHI at night, JKL as needed but only every 4 hours. There was not only the tumor on his left kidney but the cancer that had appeared to spread along the intestine below the stomach, which caused the appearance of a "blockage", thus complicating any intake of liquids or food for the past several months and also leading to the quick switch to liquid meds. The liquid versions of his pills were foul tasting (apparently - not that I tried his ketamine - thank god for being in AA! I remember hearing about the raver kids in college totally getting off on Special K... I can only imagine the hell that would have been if I decided to party), so we added apple juice to the mix, and later orange gatorade. And, later, when even liquid wouldn't stay down or would cause too much nausea, liquid drops under the tongue. Still the same morning, noon, afternoon, and night.
Time disappears. Time is not going outside for a walk with the dogs around the yard because you forget who's tagged in for med time. Time is give the meds now, find something to do for four hours, give the next round of meds. Check dad. Rub dad. Eat something. Watch the eagles. Talk about paperwork that's gotta get done. More meds.
Monday April 4:
Dad rested quite a bit until we had a visit from the home health aide who was so cheerful and compassionate, friendly and gentle. She came over to help with showering, but as Dad is very low on energy she was able to give a bed bath. Turns out her whole family is in the caretaking business and we might meet her cousin later this week for Dad's next bed bath, nail trimming, and shaving. The whole experience totally mellowed Dad out so that he slept most of the rest of the day except when the NP stopped by.
The NP's pretty great, too. She changed Dad's port, brought new supplies, helped us understand better how to comfort and support him, and listened to his chest. Dad's breathing had changed over the weekend, which we were assured is a natural part of the process. We also wanted to talk to her about pain management. While the pain med doses were helping, Dad was still feeling enough pain that he was interested in addressing it better. It wasn't an easy decision for us, because neither Dad nor Mom, my sister, or I enjoy the side effects of grogginess and haziness. But it was also a very important decision for us to make. Managing his pain and providing comfort is key at this stage. So, we all decided together that it would be better to increase the doses.
This was a crucial decision and discussion. Most interestingly, is how we all sat with the NP in dad's room and talked it through - dad including. It was clearly a major step in the process. Up the pain meds, reduce the ability to interact.
After the NP visited with Dad and changed the port, she sat with Mom, my sister, and me and patiently answered all our questions (that we had at the time - new ones arise every minute it seems). While trying to pinpoint the last moment would be helpful for our preparation - and his - it's just not as obvious as a date on a calendar or a moon phase. But there are symptoms to look for and we're paying attention for them, while focusing on giving the most patient and loving care we can. Of course, as you all know Dad, it can sometimes be challenging. He's a smart customer, a man with opinions, and has an eye for detail and attention. Despite the meds haze and the fog that pervades, he still appreciates a towel on his lap as we change tubes, a specific way of preparing for certain medical procedures, etc. But as his daughters, we have also inherited quite the same traits, so we embellish our own knack for detail by folding cords just so, cleaning connections well, and comprehending the source of some of his needs. (Perhaps these are both our separate but similar ways of expressing some control over a situation that has none and changes every hour.) As his wife, Mom patiently humors and takes on intimate tasks with courage.
Tuesday, April 5:
Dad rested most of the day, partially due to the awesome bed bath he'd gotten on Monday and a lot to do with the need for rest now. My sister and I took turns tagging in/out to help Dad with meds, a process that seems to evolve quickly.
Wednesday, April 6:
Having increased the pain meds in his port, the other medications to address the symptoms for nausea and longer-term pain have become a bit harder to ingest. The fog slows things down a lot and his stomach, growing more sensitive to the slightest additions or changes, isn't as receptive to the liquid meds. Despite this, last night he slept rather well - almost too well! As the night nurse, I tried to balance the urge to make sure he was alright and the need for sleep for us both. Thankfully - and not - he's started having random, infrequent hiccups that were an indication to me that he was doing okay through the night.
This morning, I woke him up for meds and also was able to share some really cool news. Someone he supported in the elections won. He was so happy to hear this news, his face lit up and the fog was visibly and quickly lifted - if only momentarily. I could tell he was proud, thankful, and pleased for the candidate.
Meds are again a challenge so we've moved to providing them with droppers under the tongue. The taste and scent don't seem as irritating to him today and he seems relieved of the process of pysching himself up for them, getting them to his mouth, swallowing, and concentrating on relaxing (ha!) to abate nausea.
We had a nice visit with the social worker this afternoon, and my sister got a breather in town. I was able to get some work done this afternoon as Dad slept. The spring sun has melted away quite a lot of the snow. My sister got to see a huge flock of swans fly overhead the house. Mom's enjoyed romps with the dogs in the yard. Dad's been able to hear some of the birds singing. And we've all benefited from fresh air flowing through the house - finally, windows open!
We were also visited the past days by neighbors in the area who have become friends either prior to Dad's illness or during these recent days. We're grateful for the dog-sitting (gives them a relief from being in the same house/yard and allows them a break from the stress of caregiving too), books on hospice care, the offer to run grocery shopping, the many dishes of homemade soup, pasta, chili, pie, jam, and the like. As most know, it's tiring giving care and by the end of the day or even at morning breakfast it's hard to find the gusto for cooking or even finding flavor in food. It's been such a relief to have all this healthy food made with love, and the brief but kind visits.
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It was Monday when the nurse started having discussions with us about timelines and provided us some literature on the dying process. My sister and I, internet savvy and hounds for knowledge, had already looked up all of these things online. It still didn't seem real. Although, we watched for the symptoms. While we didn't have all of the signs play out, we did notice
Signs of the preactive phase of dying:
-increased restlessness, confusion, agitation, inability to stay content in one position and insisting on changing positions frequently (exhausting family and caregivers)
-increased periods of sleep, lethargy
-beginning to show periods of pausing in the breathing (apnea) whether awake or sleeping
Signs of the Active Phase of Dying
-dramatic changes in the breathing pattern including apnea, but also including very rapid breathing or cyclic changes in the patterns of breathing (such as slow progressing to very fast and then slow again, or shallow progressing to very deep breathing while also changing rate of breathing to very fast and then slow)
-inability to swallow any fluids at all (not taking any food by mouth voluntarily as well)
-patient breathing through wide open mouth continuously and no longer can speak even if awake
-patient's extremities (such as hands, arms, feet and legs) feel very cold to touch
-jaw drop; the patient's jaw is no longer held straight and may drop to the side their head is lying towards
-mottling
My sister couldn't stop with the mottling. It was her one sign. She'd over-fiddle with his catheter bag, working gravity to help pull more urine out of his bladder. We had had a bad night when the cath had gotten plugged with mucus and he wet himself. I think more than anything my father hated bodily fluids for some reason. He could mow the lawn in 80F weather on my grandparents' farm, sweat buckets, joke around and rub his sweaty face on yours. But there was something very undignified for him in pee. After this episode, my sister couldn't stop fiddling. She even roped me in to the gravity game.
And if it wasn't the cath bag, it was mottling. "Look at his feet." He would sit on the edge of his bed for hours (before we got the way more comfortable hospital bed that could be raised up and lowered, and could prop his knees up). He'd sway, but not want to lie down. His feet would turn purplish and get cold. But he loved his bed. He paid like thousands of dollars for it. So, it took us a while to figure out that a hospital bed would be better. He only stayed in it 5 days.
The mottling. It would come and go. Toward the last days it crept up more greatly. On the morning that he died, it crept up all the way to his bald head.
It was around this time that he also started to give us glimpses. The hospice nurse called it a gift. His hallucinations or visions. Whatever you want to call them. Walking between death and life. Seeing the afterworld. Or, if you prefer, his brain started misfiring dreams.
4/7/2011, 2:11pm:
Sitting with him after the Fed Ex truck left.
He said, "Trucks can only go one-way on one-way streets."
I said, "Yes, there's only driving one-way on the one-way streets. You can't drive both ways on a one-way street."
He said, "There are only one-way streets. Let me know if you want me to drive/take you there/show you/you need to get there." (Something along those lines, as if he could drive the one-way streets or would know them. I had no idea what he was talking about. I was thinking that he was remembering driving the streets of Toledo, Spain.). "Can only go one-way so it takes a while."
[Then I realized he might have meant the path to the next life.]
He continued, "If you go à pied you can go both ways." [à pied / a pie = on foot]
I said: [in French and then Spanish:] "Si tu est a pied, tu pouvouis marcher. Si tu estas a pie, tu puedes caminar. If you go on foot you can walk (it).... "
I said: "Remember the streets in Toledo, Spain? Very narrow one-way streets. But beautiful. I bet the one-way streets are beautiful there. Are they beautiful?"
Dad went back to sleep and we helped him lay down.
One night the pain meds ran out. Because they'd be one hell of a hot commodity on the market, we weren't given the passcode to set him up with a new bag. It was about midnight. Midnight in the middle of the countryside. The unlucky hospice nurse, who we saw about 4 nights in a row for a bad luck stretch, had to drive 45 minutes to get to us. (This wasn't troubling, because Dad was a DNR - do not resuscitate. It just meant that we would worry that he wouldn't get his pain meds, the machine would continue beeping, and our sleepless night would now be punctuated with more stress.) We paused his pain meds for a bit while we waited on her arrival. When she got there, she had to walk through the instructions to set it up. And while my sister and I stood by her side to help, we were all treated to a message from the other world:
4/7/2011, midnight, Dana Hospice Nurse visiting, squatting at side of bed, working on laptop. Dad just bolted up and with a smile and giddy almost like a schoolgirl, glowing eyes asked each one of us:
"Are you my boyfriend?
Are you my boyfriend?
Who's my boyfriend?
"There's a party. I want to leave this world and go to the party. Can I leave this world and go to the party?"
- My sister and I replied yes. Of course.
Then, he said that there's no water at the party and could we get him some.
He turned to me and said "mamoosh babcrushka with ice" We asked him to clarify because we thought he said with crushed ice. He repeated "mamoosh babcrushka with ice".
Then, he lied back down.
I was simultaneously elated and terrified. When the nurse had finished hooking up the pain meds, we went into the hall and whispered about what just happened. Whispered, because, while my father had suffered from some hearing loss due to flying military airplanes for much of his career, toward the end of life, he could hear a pin drop 2 rooms over.
I started to cry, while smiling. (This actually happened frequently the day after a night shift.) This was an incredibly beautiful and moving moment, but from this night onwards I was constantly afraid that I'd be alone on night duty and have to deal with another spooky communication like that. I also felt more and more sensitive to the creaks in the house, which only happened in his bedroom or in the living room where we slept. I could sense death walking the halls, standing on the porch outside, and hovering in my dad's bedroom.
I don't remember which day we realized that we needed to divide ourselves up. We'd been doing things as the 3 of us: sitting by his side, providing meds, making dinner. We realized at some point, I think his sister suggested it to me and I spoke it aloud to my sister and mom, that it would help us all more if we split up efforts so we weren't wearing ourselves out.
It was around this point, too, that we decided we needed take the counsel: tell your loved one it's okay to let go. Individually, we spent some time with him and said our goodbyes. I told him that I knew we'd known each other in previous lives and that we'd know each other again. I told him that I knew he'd always be with me. I told him that I'd always loved his hands - long, lean fingers with sturdy, flat nails. I told him that I loved him and would always love him. And, I held his hand. And, his glazed eyes shed one small tear out of the left side. And, he said, "L, I love you, too." And, I will always always always carry that.
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Saturday, April 9:
[Mostly written by my mom.] The nights are when the tigers prowl & it's without fail that something goes awry: battery failure of a machine, which was easily changeable thank goodness; pain med bag reached low quantity requiring a midnight visit from a Hospice nurse; a change in port tubes that resulted in an unexpected inability to attach needed nutrients, which resulted in a visit from nurse close to midnight; and his new Foley catheter got plugged because they'd told us it did not need flushing - but I guess they don't know much about NEO bladders - resulting in a nurse called in at 4am to flush and help change bedding and clothing.
Mom wrote, "the girls are my mainstay as night nurses, the resultant days are this:"
Dad is comfortable, without pain, and taking his liquid meds as directed by our Doc. As holding his mouth open with tongue to the roof was cumbersome, we're now holding his lip open and placing into the inside of the cheek. The stomach pump is still running to assist with reducing nausea.
He's not speaking with us, but communicates with his eyes & attentive following of requests - eg to open his mouth so we can swab it out gently to prevent mouth issues.
The days grow longer as sunset is later, the birds are back and calling - we open his window for both fresh air & sounds - however, we know that time has also grown short for us, as a family of four. The best we can do is to keep him comfortable, loved, watched over & be grateful for each little time piece we have.
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Riddle of the time of passing
Me: Dad, we're done with meds. You can rest now.
Dad: I'll rest after the celebration of the sneeze and the golden birthday. After we have dinner. Now, let's get on with this process... (looking at the stomach pump, the pain med pump, the bedside commode, the garbage bin)
Me, searching on Google finding nothing, walking the dogs over their land, thinking and thinking: What's a celebration of a sneeze? "Bless you"... Sunday? ...Who's got a golden birthday in April? My cousin's baby turns 1 year old on 4-10-11, maybe it's a mix up: 1 on 4-11-11?
From the death bed of my father
Dad (looking at the floor between he and my sister, staring off into the distance; as I walk up to his bedside): Look out for the pathway.
Me: Am I on it?
Dad: Almost.
My sister: Am I on it?
Dad: Perhaps.
I think it was over the weekend that we decided, with some thought and little fanfare that we'd remove the TPN. At the time, while I wasn't feeling impatient, I was feeling overly sensitive to my father's pain. If keeping him on TPN was causing him to suffer more, if it prolonged or extended the dying process, it made no sense to me. And I knew this. As a family, we had already talked to each other about the "if we end up in a coma" decision - pull the plug. We had the option to ween him or stop providing it. I was prepared to stop altogether.
I was ready for this because my father was not my father any longer. He was a shell. Once I had said my good-byes, I knew that he was crossing over more and more, and what we were left to do was care for the vessel he had needed and used. We needed to guide it as gently as possible to a still place so he could use the remaining energy and focus to get out of it. Discontinuing TPN allowed the body to chart its own natural course, freeing the spirit from the veiny bonds.
I guess my sister and mom weren't as ready so we decided to ween. That only lasted a day though because no one was interested in staying up one hour later to start the TPN or waking up an hour earlier to stop it. And, the way our brains were working, there wasn't an option to change the process and introduce it during the day.
After we stopped the TPN, his urine output continued steadily, which was shocking in a way. Nothing going in. Why is it coming out? And, oddly, the left kidney was being pinched by a tumor and the right kidney was his bad one, so how on earth was it happening?
He was a skeleton when he died. My sister said he looked like a concentration camp victim. When the nurse came to bathe him again, or when we wanted to freshen him up to prevent bed sores, we would roll him on his side. It was painful for him so I tried to make it light as I leaned over and held his chest, arms, and face to me, "I'm the lucky daughter. I get the special hugs today." But his body was so brittle and bony. I hated that it caused him pain.
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Sunday April 10:
We are grateful for our decision to bring him home under Hospice care, for the comfort that he feels being surrounded by our safe, cozy home & the caring that we have patiently given him.
He sleeps peacefully, calmly and painlessly as Mom, my sister, and I tend to him; Dad's time is now his own to leave when he is ready.
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His friends and family sent so many good words. We read many of them in the beginning, but over time he wasn't interested or refused. I think he was regretful and wanted to hold on. He had been fighting the cancer for so long and was ready to fight more. Just that the cancer, which was made of his own body, had the same will. I think after a time the words hurt him and tied him more to this world, so he refused to hear them. And, they were sweet:
I understand you have filed your flight plan and that the tower has cleared you for take off. This will be your flight of a lifetime and I know that a happy landing awaits. I am so glad to be your friend. Know that we have your "six" and that friendship never ends.
I love you.
Charles Z.
I had night duty on Monday, April 11. I had feared it the Saturday, 9th. But I used the AA mantra "I'm turning it over to you. I'm turning it over to you." And asked my Higher Power for all the strength I could summon to brave the night. Monday night wasn't scary. Death wasn't clamoring. It wasn't a bull impatiently clawing at the dirt. It wasn't haunting. It was, instead, nearby. Death was watching now, with a lazy eye, disinterested with the torment my father's body was facing. Disinterested, but not unaffected.
My sister had slept in his room the night before, in an uncomfortable chair and position. So, I pulled the more comfy chair up, grabbed an ottoman, and propped up next to his bed with a blanket wrapped around me, my hand holding his.
His breathing was more difficult now. And the death rattle increased tremendously. Supposedly it's supposed to be more discomforting to us alive people than to the dying, but I disagree. My father tried with might to sit up a few times to cough it up. And when it bothered him, I hit the pain med button. I hit it as often as I could and sometimes timed the 15-minute intervals so I could preempt the complication. For some reason, at the time, my sister felt negatively about that action and choice of mine, but the hospice nurse the next day indicated it was appropriate to get ahead of the pain. Every 15 minutes. All night. I think it was one of the longest nights of my life. But it meant probably the most of anything in my life.
My sister had the night of April 12. He wasn't as bad. His breathing was still more inconsistent but the rattle had subsided quite a lot from what we hoped was the atropine finally working.
The morning of the 13th, I woke up from the couch and relieved my sister at about 7:30am. I told her to go downstairs to sleep, but she was stubborn and said no. We started the coffee. His breathing was raspy, louder, almost demanding something. The hospice nurse called to check in. We planned to see her in the afternoon. I got on the internet, looking for some good, magic words. A poem perhaps. Something to read to him to help him let go, send him on his way. I stopped at "On Death" by Kahlil Gibran and thought I should read this later on in the day. My mom had woken up, opened the blinds in his bedroom, the sun was soft, bright spring. She opened the window to let the birds' songs in and sat by my dad's side and my sister was on his other side. I put the laptop down and went to the room, and stood at the foot of his bed. My sister stood up and made the motions to cleanse his chi, floating her hands above his body, sweeping, sweeping. I grabbed the stool and sat down, holding his feet, his cold feet, in my hands. The mottling was visible up on his face.
I got up and got my camera - I had been taking photos throughout - and snapped a few. I sat back down on the stool and held his feet. My sister reached her hand across to his chest. His breathing had slowed. We sat in silence, holding him. She reached her hand over to his chest again and felt for a heartbeat. I watched him. In the quickest instance, I saw a light, white swirl like smoke tendrils above his belly. My sister stood up and reached over to his heart again.
We didn't really know what to do. We sat for a few minutes. And then, we decided to call the hospice nurse. As I got up to call, I looked out the window and she was pulling up. She came into the bedroom, listened with the stethoscope. "Are you sure?" I asked her.
She left us and did some work in the kitchen. I closed the bedroom door and created a sacred space, cleansed his chakras, closed the space. Mom decided what he'd wear for the cremation. I took photos. We called the funeral home. The hospice nurse waited. They put him on the gurney, leaving his face uncovered. We followed him out. They lifted him into the hearse (that was a PT Cruiser). We kissed his forehead. The hospice nurse left.
Wednesday, April 13:
One of Dad's go-to sayings was the 7 Ps one: Proper prior planning prevents piss poor performance.
This morning, Mom, my sister, and I each felt compelled to hang out in Dad's room with him a bit before 10am this morning. His breathing had become more shallow, but much less labored and more peaceful. We held his hands and spoke softly to him. The stomach pump was turned off and, with the window open, we could hear the morning birds chirping. He passed at 10:10 (the unofficial time). The hospice nurse arrived at 10:20, unplanned by us three, but Dad had probably arranged it. You know him...
We plan to spend some quiet time today, resting and discussing memorial service plans.
Saturday, March 26, 2011
Mostly
I'm going to miss seeing spring bloom. I've been watching from brown buds of wooden trees to tiny peeking leaves. Pink blossoms opening up. White white white petals falling over themselves. I'm going to miss seeing spring in DC.
They've moved dad over to the palliative care floor. It's 4 floors down from the outpaitent oncology floor he was on. I guess the physical relocation is fitting. He wants to go home. There's no more chemo. The radiation treatments he received relieved some pain of the tumor on his kidney. There's also ketamine, which when my sister told me, brought me back to the days of ravers and glow sticks when kids spoke about taking horse tranquilizers. She said he'd come home with heavy pain meds in a lock box. We joked that we could sell that shit on the street for a pretty penny. And other pain meds.
She says they've talked to hospice to understand what they provide. While we searched for in-home nurse care that wouldn't break the bank, we found nothing. They live in the countryside, where families do the caretaking. Not a lot of freed-up nurses. But I guess hospice visits often and whenever we hit a "rough patch" and need them to call -- which is apparently what happened to us while we were taking care of him before: learned how to set up the TP feeding (bag to a line, line to his port) and had to deal with air bubbles (omg, are we going to kill him if one gets in his line?! omg there's air in the bag! omg, I can't pull back on his port to draw any blood to check if the line's clear - is it clogged?) and then him vomiting all night long. Hospice can come to help. And there won't be vomiting now. The stomach pump takes care of that. TP in, stomach bile out. There is no use of his GI tract now, which the palliative care doctor says puts him on the shorter side of the timeline. If they said 6-12 weeks 2 weeks ago. Well, we can do the math.
Hospitals are not known for their planning skills we're learning. Last time we checked him out, we found out on the day that he'd be released. A nurse from home care, a rep from home care plus, a case worker - all disorganized, all unplanned, all a disarray to us. Yesterday they said he would come home on Tuesday, with medical equipment needing delivery on Monday.
Mother Nature is not helpful. The weather conditions have fucked my family over. Eight inches of snow last week, a friend came to plow and missed the driveway, the thaw that has turned their country driveway into a mud pit. How to get my dad home, how to get the hospital equipment to the house, how to ease the coming and goings for hospice care. There was a panic in my sister's voice. A defeated, worn out, almost crazy discussion with her last night. My mom has hit the end of her rope.
There have been new financial troubles and revelations that post-dad might not be as rosy as hoped. This brings out anger and resentment, fear and desperateness. I've imagined his frail body in the bed in the house, hooked up to machines, and not being able to help myself from pinching him -- hard, repeatedly. I'm angry at his selfishness, his stubbornness, his childish decisions that he made in a complicated marriage. But I won't pinch him. It's the pillow experiment - talk to the pillow as if it's him, punch it, get the anger out. "You've become a different person to me. Who are you? You are not the father I knew and loved, adored, and suffered the strongest love-hate relationship with. Who are you? Why did you do this? How could you?" I'm wrestling with this now.
A shell of a woman, I told my therapist. I'm coming and going and not sure if I'm coming or going. I'm finding I can't cry at home - home from work, be brave and be funny when calling my sister and mom and then entertain myself with Deadwood. I can't cry in AA meetings - too humiliating for my pride. I can cry one-on-one with a friend or (terribly unfortunately) my boss or the therapist. I can sob in the therapist's office. And then, clean myself up, and head back to the metro and back to my office. The therapist said I need to do something that will fill me up this weekend - fill this shell of a woman. What do I do? I asked her. I feel helpless right now. How do I process this? What is death? I watched a National Geographic "Moment of Death". It did nothing for me. How did I get dressed this morning? How am I walking from the metro to my office? Someone in my agency offered me a new job. I can't even think about that.
I feel so far away from his changes. I will likely be shocked. I feel so far away to help well. My sister and mother have been so strong. I'm trying to feed off of this routine of work, meeting, TV, sleep - because right now is a vacation. When I get there this week, it will be hell. A complicated, sad, frustrating, overwhelming hell. But I have to be there. I have to be there for him. I'm terribly scared he'll be sad or afraid. I want him surrounded by love, despite the mistakes he's made.
There's today - a sunny, lovely, chilly spring day in DC. There's tonight - maybe an AA meeting. There's tomorrow - 4 months sober, AA meeting with friends to cheer my chip, brunch with other friends, laundry, packing. There's Monday - work from home, head to the train station, go to Philly with my boss. There's Tuesday - all day Philly events with boss, train station, back to DC, back home. There's Wednesday - an early flight to Wisconsin. And then... there's I have no idea. The great unknown. The void and the whirlwind. The calm and the up-every-hour. The sun through the window and the possible pushing cars out of mud in haste and panic. The test of strength and endurance. As my sister says, this is a marathon. Energy drinks at the wayside, energy bars, but keep moving forward. My alcoholic mother is an energy sap and spew of negativity. She's been fucked over and is fucked up. It will be a sister thing. Patience when we lose ours, listening when all there is is to spit exhaustion, holding, crying, cursing, trying to remember to eat, cooking, feeding, caring, waking, napping, and maybe some work in there if I can.
I don't want to go, I can't wait to go, I need to go now. I hate him, I love him, I'm scared for him. Coming, going, sitting. Mostly I have no idea.
They've moved dad over to the palliative care floor. It's 4 floors down from the outpaitent oncology floor he was on. I guess the physical relocation is fitting. He wants to go home. There's no more chemo. The radiation treatments he received relieved some pain of the tumor on his kidney. There's also ketamine, which when my sister told me, brought me back to the days of ravers and glow sticks when kids spoke about taking horse tranquilizers. She said he'd come home with heavy pain meds in a lock box. We joked that we could sell that shit on the street for a pretty penny. And other pain meds.
She says they've talked to hospice to understand what they provide. While we searched for in-home nurse care that wouldn't break the bank, we found nothing. They live in the countryside, where families do the caretaking. Not a lot of freed-up nurses. But I guess hospice visits often and whenever we hit a "rough patch" and need them to call -- which is apparently what happened to us while we were taking care of him before: learned how to set up the TP feeding (bag to a line, line to his port) and had to deal with air bubbles (omg, are we going to kill him if one gets in his line?! omg there's air in the bag! omg, I can't pull back on his port to draw any blood to check if the line's clear - is it clogged?) and then him vomiting all night long. Hospice can come to help. And there won't be vomiting now. The stomach pump takes care of that. TP in, stomach bile out. There is no use of his GI tract now, which the palliative care doctor says puts him on the shorter side of the timeline. If they said 6-12 weeks 2 weeks ago. Well, we can do the math.
Hospitals are not known for their planning skills we're learning. Last time we checked him out, we found out on the day that he'd be released. A nurse from home care, a rep from home care plus, a case worker - all disorganized, all unplanned, all a disarray to us. Yesterday they said he would come home on Tuesday, with medical equipment needing delivery on Monday.
Mother Nature is not helpful. The weather conditions have fucked my family over. Eight inches of snow last week, a friend came to plow and missed the driveway, the thaw that has turned their country driveway into a mud pit. How to get my dad home, how to get the hospital equipment to the house, how to ease the coming and goings for hospice care. There was a panic in my sister's voice. A defeated, worn out, almost crazy discussion with her last night. My mom has hit the end of her rope.
There have been new financial troubles and revelations that post-dad might not be as rosy as hoped. This brings out anger and resentment, fear and desperateness. I've imagined his frail body in the bed in the house, hooked up to machines, and not being able to help myself from pinching him -- hard, repeatedly. I'm angry at his selfishness, his stubbornness, his childish decisions that he made in a complicated marriage. But I won't pinch him. It's the pillow experiment - talk to the pillow as if it's him, punch it, get the anger out. "You've become a different person to me. Who are you? You are not the father I knew and loved, adored, and suffered the strongest love-hate relationship with. Who are you? Why did you do this? How could you?" I'm wrestling with this now.
A shell of a woman, I told my therapist. I'm coming and going and not sure if I'm coming or going. I'm finding I can't cry at home - home from work, be brave and be funny when calling my sister and mom and then entertain myself with Deadwood. I can't cry in AA meetings - too humiliating for my pride. I can cry one-on-one with a friend or (terribly unfortunately) my boss or the therapist. I can sob in the therapist's office. And then, clean myself up, and head back to the metro and back to my office. The therapist said I need to do something that will fill me up this weekend - fill this shell of a woman. What do I do? I asked her. I feel helpless right now. How do I process this? What is death? I watched a National Geographic "Moment of Death". It did nothing for me. How did I get dressed this morning? How am I walking from the metro to my office? Someone in my agency offered me a new job. I can't even think about that.
I feel so far away from his changes. I will likely be shocked. I feel so far away to help well. My sister and mother have been so strong. I'm trying to feed off of this routine of work, meeting, TV, sleep - because right now is a vacation. When I get there this week, it will be hell. A complicated, sad, frustrating, overwhelming hell. But I have to be there. I have to be there for him. I'm terribly scared he'll be sad or afraid. I want him surrounded by love, despite the mistakes he's made.
There's today - a sunny, lovely, chilly spring day in DC. There's tonight - maybe an AA meeting. There's tomorrow - 4 months sober, AA meeting with friends to cheer my chip, brunch with other friends, laundry, packing. There's Monday - work from home, head to the train station, go to Philly with my boss. There's Tuesday - all day Philly events with boss, train station, back to DC, back home. There's Wednesday - an early flight to Wisconsin. And then... there's I have no idea. The great unknown. The void and the whirlwind. The calm and the up-every-hour. The sun through the window and the possible pushing cars out of mud in haste and panic. The test of strength and endurance. As my sister says, this is a marathon. Energy drinks at the wayside, energy bars, but keep moving forward. My alcoholic mother is an energy sap and spew of negativity. She's been fucked over and is fucked up. It will be a sister thing. Patience when we lose ours, listening when all there is is to spit exhaustion, holding, crying, cursing, trying to remember to eat, cooking, feeding, caring, waking, napping, and maybe some work in there if I can.
I don't want to go, I can't wait to go, I need to go now. I hate him, I love him, I'm scared for him. Coming, going, sitting. Mostly I have no idea.
Sunday, March 20, 2011
Spring
They've said he's got 6-12 weeks to live. That was last week.
I'm going back out there end of this month.
It's been hard. Really hard. Verge of tears constantly. Not finding any connection in AA meetings, not picked up a regular sponsor. I'm not interested in drinking - thank god I've been relieved of the craving to drink - but I often wish I had something to take away the pain. I started back on melatonin to get sleepy at night and to sleep the night. And, since I ended "Six Feet Under" I'm now on "Deadwood." I guess those are my "drugs" these days.
I bought a couch - finally. After living in this grown-up's apartment with a bare living room for a year. It should make it here in time for me to need the cozy, curl-up comfort. I've already bought a standing lamp for it and am eyeing some rugs and a matching chair. I like this apartment and the building. I'm looking forward to biking around (bought an air pump and plan to visit a pally who can tweak the gears so they're aligned correctly), and taking walks in the Glover Park forest.
Some days I wish he'd die to relieve himself of the pain and discomfort, but he's got more living to do. It seems some of us die more quickly in the body and slower in the mind, and others (like my grandmother) die more quickly in the mind with the body slowly catching up. My grandfather had the best way out: a heart attack. No lingering long bedside medications, no mirror to see the tufts of hair go, no added surgery or chemo or radiation to give 10% of a chance at one extra week, no dementia to forget who you are or where you are or how to dress, no creaky hips, no broken nothing.
I can't fathom what it will be like without my dad in my life. I don't want to have to whisper to a ghost when I have questions about mechanics, need analysis relayed from Consumer Reports, need a dad hug or hear his pride.
I'm going back out there end of this month.
It's been hard. Really hard. Verge of tears constantly. Not finding any connection in AA meetings, not picked up a regular sponsor. I'm not interested in drinking - thank god I've been relieved of the craving to drink - but I often wish I had something to take away the pain. I started back on melatonin to get sleepy at night and to sleep the night. And, since I ended "Six Feet Under" I'm now on "Deadwood." I guess those are my "drugs" these days.
I bought a couch - finally. After living in this grown-up's apartment with a bare living room for a year. It should make it here in time for me to need the cozy, curl-up comfort. I've already bought a standing lamp for it and am eyeing some rugs and a matching chair. I like this apartment and the building. I'm looking forward to biking around (bought an air pump and plan to visit a pally who can tweak the gears so they're aligned correctly), and taking walks in the Glover Park forest.
Some days I wish he'd die to relieve himself of the pain and discomfort, but he's got more living to do. It seems some of us die more quickly in the body and slower in the mind, and others (like my grandmother) die more quickly in the mind with the body slowly catching up. My grandfather had the best way out: a heart attack. No lingering long bedside medications, no mirror to see the tufts of hair go, no added surgery or chemo or radiation to give 10% of a chance at one extra week, no dementia to forget who you are or where you are or how to dress, no creaky hips, no broken nothing.
I can't fathom what it will be like without my dad in my life. I don't want to have to whisper to a ghost when I have questions about mechanics, need analysis relayed from Consumer Reports, need a dad hug or hear his pride.
Thursday, March 3, 2011
In the tundra
My dad is snoring softly in his bedroom, wrapped in a red blanket like one of those glow worms kids take to bed. Sometimes the snores are deeper, louder breaths and sometimes they stop in rthym and I hope he isn't disturbed by my typing out here in the living room. My mom always points out that his hearing has diminished from all the flying in the Air Force, but I think he hears some things that are quiet. Although he didn't hear the double-beep this morning at 7:30 when the IV nutrients had done their overnight, 12-hour feeding.
He was nearly dead to us last week.
I came out 3 weeks ago and stayed for 8 days. He had just been admitted to the hospital after 3 weeks of vomiting that built up some ulcers in his stomach and gave him esophagitis. In early January, the test results came back that the chemo trial he was in hadn't been working to diminish the tumor on his kidney. It had grown actually - only slightly, but a rather significant sign that treatment wasn't working. He decided then to take a break from chemo. His other options were to try 2 different combinations of chemo, but if it hadn't been working he wasn't feeling optimistic that it would now. He preferred to get some energy back, some taste buds, and some of his hair. Despite his decision, at the beginning of February, he was referred away from Mayo Clinic (through which he participated in the cancer treatment trial) to a more local doctor and hospital and tried chemo again. It might have been this round of chemo that set him into vomiting, or - we wondered at the time - a flu, or - we guessed later - a spread in the cancer.
Regardless, the 3 weeks of vomiting had dehydrated him, left him malnutritioned, and decreased his weight to a hollow 150lbs. When I came out the first time, we were focused on keeping my mother sane (after 3 weeks of living with and watching a stubborn old man that she loved deteriorate), figuring out if the cancer had spread, and being around him for our own and his comfort. The hospital sucked, really. The main dietitian was clueless about how to help us, and wasn't very offering to do so. The doctor treating him, while liked by my parents for his passion for aviation and long career of treating cancer patients, wasn't wonderfully communicative or helpful in alleviating our concerns: had the cancer spread? should we do an MRI or CT scan? if there's no blockage in his intestines, what's impeding digestion? is cancer causing the motility issues? We went from a liquid diet (broths, popsicles) to soft food diet (cream of chicken soup, mashed potatoes) and back again as the food just sat like a lump in his stomach, caused vomiting, or created discomfort. And because of the chemo treatment earlier in the week and debilitating vomiting, his blood count hadn't risen enough to consider new, aggressive chemo to treat the purported spread of cancer along his intestinal lining near his stomach.
Finally though, his counts were high enough and he got some chemo. But he still wasn't eating enough or getting enough nutrition. He'd been hydrated well through IVs, but there weren't enough calories getting into his system. So, on the day I flew back to DC, a foggy day that impeded me from driving the hour to the hospital or my sister driving the 3-hours to my parents from Minneapolis, he got a feeding tube. It killed me that he was all alone for this procedure. That he and we were stranded. But it went well.
I was back for a week in DC and heard only reports over the phone that the feeding tube was creating discomfort, that he wasn't gaining weight, that he couldn't sleep, that the pain in his lower back (a knot in a muscle from laying in one place for too long? the tumor on the kidney?) caused him more discomfort and he was starting oxycodone, that he would now get IV nutrients (something that we'd heard the insurance company would only cover for patients who could not eat at all - a bad sign). My mother again thought that my sister and I should come back. Sometimes we were convinced this could be the short end to the slow drawn out finality. Sometimes we thought it was just a dip in the rollercoaster. Sometimes we thought days, weeks, or a couple of months, or hours. Sometimes we thought about Uncle Jim who had a tumor in his brain from smoking cigarettes, and who, just 4 hours after he and my aunt had met with the doctor to discuss further chemo treatment, had a heart attack as she bathed him in the hotel bathtub. Sometimes we thought about Christmas this year. Or, was last year the last?
I decided to buy a ticket for Sunday. It would give me the Friday in DC to celebrate my 90-days of sobriety, and a Saturday to pack. I cried in the office on Thursday, told a few co-workers that he'd gotten worse, fantasized darkly about the end, tried to stay strong, and started to plan how to do my Step 9 amends to him. Then, Friday I heard that he was looking better and feeling better, making jokes, and gaining weight. Saturday, I heard he was even better. I started wondering why I was returning. Not that I wanted to pass up a moment with my family, but I would miss more work and would miss meetings, and I wasn't sure that my presence would mean so much.
I arrived Sunday to my parents' house. My mom, sister, and her dogs. I was feeling out of my element. It's kind of like a wolf pack. Me and my mom alone and I know I'm Alpha, take charge, do the adult-required role, lead the decisions. But my sister is also an Alpha - if not more so than I am. I'm more of a collaborative coalition leader. She's more of a power-grabber, disseminating information as needed. I sulked a bit and felt out of the loop. Monday morning I pointed out to her that it would be nice (aka more appropriate) if she would put the speakerphone on when dad called for his morning hello from the hospital so we could all hear. I tried not to be mean, but I know it came out snappy.
....................... as much as I got on that one.
He was nearly dead to us last week.
I came out 3 weeks ago and stayed for 8 days. He had just been admitted to the hospital after 3 weeks of vomiting that built up some ulcers in his stomach and gave him esophagitis. In early January, the test results came back that the chemo trial he was in hadn't been working to diminish the tumor on his kidney. It had grown actually - only slightly, but a rather significant sign that treatment wasn't working. He decided then to take a break from chemo. His other options were to try 2 different combinations of chemo, but if it hadn't been working he wasn't feeling optimistic that it would now. He preferred to get some energy back, some taste buds, and some of his hair. Despite his decision, at the beginning of February, he was referred away from Mayo Clinic (through which he participated in the cancer treatment trial) to a more local doctor and hospital and tried chemo again. It might have been this round of chemo that set him into vomiting, or - we wondered at the time - a flu, or - we guessed later - a spread in the cancer.
Regardless, the 3 weeks of vomiting had dehydrated him, left him malnutritioned, and decreased his weight to a hollow 150lbs. When I came out the first time, we were focused on keeping my mother sane (after 3 weeks of living with and watching a stubborn old man that she loved deteriorate), figuring out if the cancer had spread, and being around him for our own and his comfort. The hospital sucked, really. The main dietitian was clueless about how to help us, and wasn't very offering to do so. The doctor treating him, while liked by my parents for his passion for aviation and long career of treating cancer patients, wasn't wonderfully communicative or helpful in alleviating our concerns: had the cancer spread? should we do an MRI or CT scan? if there's no blockage in his intestines, what's impeding digestion? is cancer causing the motility issues? We went from a liquid diet (broths, popsicles) to soft food diet (cream of chicken soup, mashed potatoes) and back again as the food just sat like a lump in his stomach, caused vomiting, or created discomfort. And because of the chemo treatment earlier in the week and debilitating vomiting, his blood count hadn't risen enough to consider new, aggressive chemo to treat the purported spread of cancer along his intestinal lining near his stomach.
Finally though, his counts were high enough and he got some chemo. But he still wasn't eating enough or getting enough nutrition. He'd been hydrated well through IVs, but there weren't enough calories getting into his system. So, on the day I flew back to DC, a foggy day that impeded me from driving the hour to the hospital or my sister driving the 3-hours to my parents from Minneapolis, he got a feeding tube. It killed me that he was all alone for this procedure. That he and we were stranded. But it went well.
I was back for a week in DC and heard only reports over the phone that the feeding tube was creating discomfort, that he wasn't gaining weight, that he couldn't sleep, that the pain in his lower back (a knot in a muscle from laying in one place for too long? the tumor on the kidney?) caused him more discomfort and he was starting oxycodone, that he would now get IV nutrients (something that we'd heard the insurance company would only cover for patients who could not eat at all - a bad sign). My mother again thought that my sister and I should come back. Sometimes we were convinced this could be the short end to the slow drawn out finality. Sometimes we thought it was just a dip in the rollercoaster. Sometimes we thought days, weeks, or a couple of months, or hours. Sometimes we thought about Uncle Jim who had a tumor in his brain from smoking cigarettes, and who, just 4 hours after he and my aunt had met with the doctor to discuss further chemo treatment, had a heart attack as she bathed him in the hotel bathtub. Sometimes we thought about Christmas this year. Or, was last year the last?
I decided to buy a ticket for Sunday. It would give me the Friday in DC to celebrate my 90-days of sobriety, and a Saturday to pack. I cried in the office on Thursday, told a few co-workers that he'd gotten worse, fantasized darkly about the end, tried to stay strong, and started to plan how to do my Step 9 amends to him. Then, Friday I heard that he was looking better and feeling better, making jokes, and gaining weight. Saturday, I heard he was even better. I started wondering why I was returning. Not that I wanted to pass up a moment with my family, but I would miss more work and would miss meetings, and I wasn't sure that my presence would mean so much.
I arrived Sunday to my parents' house. My mom, sister, and her dogs. I was feeling out of my element. It's kind of like a wolf pack. Me and my mom alone and I know I'm Alpha, take charge, do the adult-required role, lead the decisions. But my sister is also an Alpha - if not more so than I am. I'm more of a collaborative coalition leader. She's more of a power-grabber, disseminating information as needed. I sulked a bit and felt out of the loop. Monday morning I pointed out to her that it would be nice (aka more appropriate) if she would put the speakerphone on when dad called for his morning hello from the hospital so we could all hear. I tried not to be mean, but I know it came out snappy.
....................... as much as I got on that one.
Saturday, February 5, 2011
Ask, and sometimes you get
Interesting how prayer works. Sure, one can chalk it up to neurological responses, or mind-tricks that, once said/thought aloud, enable actions to happen. One of the (many) slogans in AA is: Don't Think. I'm trying not to think too hard about things - just letting the brainwash happen. Opening up and accepting. Letting myself be curious and open to new ideas, like a Higher Power, prayer, humility, the power of people, the possibility of brain surgery through thought-rearranging (not an AA slogan), etc.
So, on Monday or Sunday of the week of January 16, I did what I was suggested to do. I've often heard people in groups say they get down on their knees and pray. The knee-part resembling the act of humility and powerlessness - a symbol. The praying part the communication of realizing one is not the greatest power in the world and that help can be sought - another symbol. So, that night I got on my knees. The floor felt hard. I felt silly. But I knew that I'd been thinking about Step One quite a bit and wondering if I really truly was powerless to alcohol. The part of my life becoming unmanageable seemed more tangible to agree to: the cycle of drinking too much, going to work and shaking, unable to write anything with a pen without my hand cramping to form legible letters, the paranoia coming with thinking that everyone could tell I was a horrible drinker, the flush of my face after a night of drinking, the terrible feelings that drove me to drink as soon I got home from work, my history dotted with financial instability and blackouts.
So, I got on my knees and asked my HP to help me know and understand if I was truly powerless to alcohol. (Of course, the prayer was a bit longer, but not so long that I felt Catholic.) Then, I went to bed.
Now, I prefaced this blog entry with the fact that prayer could be dismissed as self-brain-washing, convincing the brain to create false connections, and perhaps even an act to induce certain actions that later are dismissed as coincidence or fate or a prayer being answered. But that following Tuesday, I was on the bus, put my cell phone in my jacket pocket, and walked home realizing it had fallen out on the bus. The first time I've ever lost a cell phone. What a state of panic! Luckily, I had my work phone and called the bus depot repeatedly but no one answered. I went back to the bus stop, got on the other side of the street thinking I could catch the same bus coming back through town the opposite way. I waited an hour in the freezing cold and began to realize I was, indeed, powerless - to more than alcohol. I had no control over (presumably) dropping my cell phone on the bus, and no control or power to bring it back. All I could do was hope that I'd be reunited (and I say it so dramatically because anyone who has lost theirs understands the desperate connection: I don't memorize or write down phone numbers anywhere, including my sponsor's).
And then I realized that this powerlessness extended beyond the cell phone lost. (An hour at a bus stop with infrequently passing buses offers a lot of time to think.) Even if I tell my dad over Christmas that he needs to not just make a chart of the exercises he does to strengthen his previously broken ankle, but that he DO them - it doesn't mean he'll do them. (Although he did.) No matter if I try to order my life or control the chaos, life will unfold the way it's going to unfold: I could get fired from my job, my father will die someday, I can slip and break a hip, political chaos will break out in countries all over the world, people will say things that hurt me, I will think nasty thoughts, I will run late to the bus, natural disasters will wipe out whole cities, etc... I can't control everything, in fact, I can only pretend to myself that I have an ounce of control and power over life. It doesn't mean I stop trying to make it on time to the bus, stop harassing my dad to do his exercises and eat well, stop trying to reduce my carbon footprint, stop encouraging world peace, or stop losing my cell phone. But it means that I can be and am powerless over alcohol. I can't control my drinking. I can't stop at one in a night and I can't drink like a normal person.
After an hour, a bus came by, the driver gave me the number to call, I called and they said they'd look around at the buses that had returned to the depot. A few minutes later, they called to say they'd found it. Luck had it that I have a membership to Zipcar and one was available. I cruised out to the depot, picked it up, tipped a $20, and drove home. On the way, to console myself, or to do a bad thing to my body, or whatever it was, I bought some Mickey Dees for dinner. (Who knows why. I eat it maybe once every two years. It's the juicy fries!)
The next day, perhaps due to the horrible food, or the stress of the cell phone incident, or grasping the idea that my dad's losing the battle with cancer, or PMS, or the full moon, or life just is life, I broke down crying at work. Thankfully, I have my own office, and gratefully, I had 2 women I could turn to from the program. I couldn't stop crying. It came out of nowhere and I just couldn't stop. Both the women concurred that I should leave work, but that as soon as I left I needed to go to a meeting. So, I came home, dropped my stuff off, and made it to the 4pm. It was a packed meeting (with the doors to the meeting open and people sitting in the hallway), but I spotted an open space where a chair was missing, grabbed a chair from the other room, and plunked it down. It seemed like serendipity, fate, perfect timing. Like, I was supposed to be there and the cosmos opened up for that possibility.
I sat down and cried through the whole meeting. It was a regular old speaker's meeting, where some old guy was telling his story of how it was, how he came to AA, and how it is now; and those in the room spoke about their own stories or checked in with the group. All I did was cry. I stayed for my regular 6pm meeting and stopped crying, got a hug from a girl I had previously found a bit annoying but felt perfect in her friendship, and even laughed several times.
The next day, I felt better, made it through the full work day, and went to a meeting. We were reading Step Three: Made a decision to turn our will and our lives over to the care of God as we understood Him.
Aside:
Again, people have asked me how I feel about the religious aspect of AA. It's not religious, it's spiritual - in as much as alcoholics need to be reduced to human beings, not the cocksure self-gods that we become, and need to have some firm belief in something greater than themselves: the fellowship, a deity, nature, an idea, or, hell, even an object like a doorknob. Something that an alcoholic can turn to when they're faced with a craving, a temptation, an accidental drink that is handed to them. -- Someone told me of how a group of AAs went out after a meeting to have dinner together. The table next to them were celebrating a birthday and downing shots of tequila, they bought the AA table a round. The waiter put the shots down in front of them and they froze. Luckily, someone's "normal" boyfriend was there, and when all the AAs were frozen in what to do, he stepped up, gathered up the shots and told the waiter that they don't drink. --
It's not that AA is recruiting for a local church or trying to make Christians out of the helpless. It's that there fundamentally needs to be a way for alcoholics to not depend on their own minds in times of crisis. We're encouraged to learn how to make phone calls to other people in the program, because for some of us, after years of drinking into deeper isolation, we have forgetten how to connect with other people. It's why, when I was newly sober and a friend in the program invited me to her house for dinner, I panicked and cried. Every social event of my life since age 18 has been infused with alcohol. I don't know how to interact with people without drinking. And, if I'm in a space where I feel like I want to take a drink, or I feel confused/depressed/happy and think that drinking will be a great remedy or addition, I have a network of people who I can rely on to help stop that first drink. And, if the fellowship can't help, that I can turn to a HP and a way of life that avails me of the tools to face whatever event I'm facing. For, if I am left to my own sobriety - without a life program, without a fellowship, without an idea greater than myself - I will fail for sure. I'm not strong enough to quiet the weird neurosis in my brain that encourages me toward drinking or other behavior. And, so far, there's no medicinal cure for this disability.
Oh, and AA was pioneered in the '30s, so it's pretty fucking cool that they even considered that people (Americans for that matter) could not believe in a Christian god. Granted, the program has worked successfully since then, so they don't consider re-writing the original text, which can be very annoying - as a woman and a non-Christian. Regardless, they left room for those of us who don't believe in that type of god, by qualifying "God" with "as we understood Him".
/Aside
So there we were reading Step Three (link - opens in PDF), and I know that sharing - speaking up in the meeting - is good for my growth. It not only helps me to get shit out of my mind, but helps those in the room if they're suffering the same problem, sharing the same joy, need to be reminded of back when they started sobriety, etc. And I really wanted to tell my journey to realizing powerlessness, but I absolutely hate speaking in public. (Lots of alcoholics suffer horribly low self-esteem.) So, I was thinking about sharing, and I asked my HP to give me the courage to do so. And then, it struck me, instead of asking for the courage or the right words or not to cry or not to blush, maybe I should just turn it over. Not as in, let me become a doormat to an invisible HP, or I can't do anything on my own, or I won't manage my own life. More like, if I should share, if it benefits the greater good of the group, if it should be, then HP, help me to do it. And, I raised my hand and told the story, including that recent decision.
And, it felt damn good. I was able to laugh about the cause and effect - pray, but look out, never know what you're gonna get! Able to relieve some of the pressure of the day-long crying. Able to admit that I cried, that I lost power and control, that I was humbled, that I was struggling with life circumstances, and that I needed help.
So, on Monday or Sunday of the week of January 16, I did what I was suggested to do. I've often heard people in groups say they get down on their knees and pray. The knee-part resembling the act of humility and powerlessness - a symbol. The praying part the communication of realizing one is not the greatest power in the world and that help can be sought - another symbol. So, that night I got on my knees. The floor felt hard. I felt silly. But I knew that I'd been thinking about Step One quite a bit and wondering if I really truly was powerless to alcohol. The part of my life becoming unmanageable seemed more tangible to agree to: the cycle of drinking too much, going to work and shaking, unable to write anything with a pen without my hand cramping to form legible letters, the paranoia coming with thinking that everyone could tell I was a horrible drinker, the flush of my face after a night of drinking, the terrible feelings that drove me to drink as soon I got home from work, my history dotted with financial instability and blackouts.
So, I got on my knees and asked my HP to help me know and understand if I was truly powerless to alcohol. (Of course, the prayer was a bit longer, but not so long that I felt Catholic.) Then, I went to bed.
Now, I prefaced this blog entry with the fact that prayer could be dismissed as self-brain-washing, convincing the brain to create false connections, and perhaps even an act to induce certain actions that later are dismissed as coincidence or fate or a prayer being answered. But that following Tuesday, I was on the bus, put my cell phone in my jacket pocket, and walked home realizing it had fallen out on the bus. The first time I've ever lost a cell phone. What a state of panic! Luckily, I had my work phone and called the bus depot repeatedly but no one answered. I went back to the bus stop, got on the other side of the street thinking I could catch the same bus coming back through town the opposite way. I waited an hour in the freezing cold and began to realize I was, indeed, powerless - to more than alcohol. I had no control over (presumably) dropping my cell phone on the bus, and no control or power to bring it back. All I could do was hope that I'd be reunited (and I say it so dramatically because anyone who has lost theirs understands the desperate connection: I don't memorize or write down phone numbers anywhere, including my sponsor's).
And then I realized that this powerlessness extended beyond the cell phone lost. (An hour at a bus stop with infrequently passing buses offers a lot of time to think.) Even if I tell my dad over Christmas that he needs to not just make a chart of the exercises he does to strengthen his previously broken ankle, but that he DO them - it doesn't mean he'll do them. (Although he did.) No matter if I try to order my life or control the chaos, life will unfold the way it's going to unfold: I could get fired from my job, my father will die someday, I can slip and break a hip, political chaos will break out in countries all over the world, people will say things that hurt me, I will think nasty thoughts, I will run late to the bus, natural disasters will wipe out whole cities, etc... I can't control everything, in fact, I can only pretend to myself that I have an ounce of control and power over life. It doesn't mean I stop trying to make it on time to the bus, stop harassing my dad to do his exercises and eat well, stop trying to reduce my carbon footprint, stop encouraging world peace, or stop losing my cell phone. But it means that I can be and am powerless over alcohol. I can't control my drinking. I can't stop at one in a night and I can't drink like a normal person.
After an hour, a bus came by, the driver gave me the number to call, I called and they said they'd look around at the buses that had returned to the depot. A few minutes later, they called to say they'd found it. Luck had it that I have a membership to Zipcar and one was available. I cruised out to the depot, picked it up, tipped a $20, and drove home. On the way, to console myself, or to do a bad thing to my body, or whatever it was, I bought some Mickey Dees for dinner. (Who knows why. I eat it maybe once every two years. It's the juicy fries!)
The next day, perhaps due to the horrible food, or the stress of the cell phone incident, or grasping the idea that my dad's losing the battle with cancer, or PMS, or the full moon, or life just is life, I broke down crying at work. Thankfully, I have my own office, and gratefully, I had 2 women I could turn to from the program. I couldn't stop crying. It came out of nowhere and I just couldn't stop. Both the women concurred that I should leave work, but that as soon as I left I needed to go to a meeting. So, I came home, dropped my stuff off, and made it to the 4pm. It was a packed meeting (with the doors to the meeting open and people sitting in the hallway), but I spotted an open space where a chair was missing, grabbed a chair from the other room, and plunked it down. It seemed like serendipity, fate, perfect timing. Like, I was supposed to be there and the cosmos opened up for that possibility.
I sat down and cried through the whole meeting. It was a regular old speaker's meeting, where some old guy was telling his story of how it was, how he came to AA, and how it is now; and those in the room spoke about their own stories or checked in with the group. All I did was cry. I stayed for my regular 6pm meeting and stopped crying, got a hug from a girl I had previously found a bit annoying but felt perfect in her friendship, and even laughed several times.
The next day, I felt better, made it through the full work day, and went to a meeting. We were reading Step Three: Made a decision to turn our will and our lives over to the care of God as we understood Him.
Aside:
Again, people have asked me how I feel about the religious aspect of AA. It's not religious, it's spiritual - in as much as alcoholics need to be reduced to human beings, not the cocksure self-gods that we become, and need to have some firm belief in something greater than themselves: the fellowship, a deity, nature, an idea, or, hell, even an object like a doorknob. Something that an alcoholic can turn to when they're faced with a craving, a temptation, an accidental drink that is handed to them. -- Someone told me of how a group of AAs went out after a meeting to have dinner together. The table next to them were celebrating a birthday and downing shots of tequila, they bought the AA table a round. The waiter put the shots down in front of them and they froze. Luckily, someone's "normal" boyfriend was there, and when all the AAs were frozen in what to do, he stepped up, gathered up the shots and told the waiter that they don't drink. --
It's not that AA is recruiting for a local church or trying to make Christians out of the helpless. It's that there fundamentally needs to be a way for alcoholics to not depend on their own minds in times of crisis. We're encouraged to learn how to make phone calls to other people in the program, because for some of us, after years of drinking into deeper isolation, we have forgetten how to connect with other people. It's why, when I was newly sober and a friend in the program invited me to her house for dinner, I panicked and cried. Every social event of my life since age 18 has been infused with alcohol. I don't know how to interact with people without drinking. And, if I'm in a space where I feel like I want to take a drink, or I feel confused/depressed/happy and think that drinking will be a great remedy or addition, I have a network of people who I can rely on to help stop that first drink. And, if the fellowship can't help, that I can turn to a HP and a way of life that avails me of the tools to face whatever event I'm facing. For, if I am left to my own sobriety - without a life program, without a fellowship, without an idea greater than myself - I will fail for sure. I'm not strong enough to quiet the weird neurosis in my brain that encourages me toward drinking or other behavior. And, so far, there's no medicinal cure for this disability.
Oh, and AA was pioneered in the '30s, so it's pretty fucking cool that they even considered that people (Americans for that matter) could not believe in a Christian god. Granted, the program has worked successfully since then, so they don't consider re-writing the original text, which can be very annoying - as a woman and a non-Christian. Regardless, they left room for those of us who don't believe in that type of god, by qualifying "God" with "as we understood Him".
/Aside
So there we were reading Step Three (link - opens in PDF), and I know that sharing - speaking up in the meeting - is good for my growth. It not only helps me to get shit out of my mind, but helps those in the room if they're suffering the same problem, sharing the same joy, need to be reminded of back when they started sobriety, etc. And I really wanted to tell my journey to realizing powerlessness, but I absolutely hate speaking in public. (Lots of alcoholics suffer horribly low self-esteem.) So, I was thinking about sharing, and I asked my HP to give me the courage to do so. And then, it struck me, instead of asking for the courage or the right words or not to cry or not to blush, maybe I should just turn it over. Not as in, let me become a doormat to an invisible HP, or I can't do anything on my own, or I won't manage my own life. More like, if I should share, if it benefits the greater good of the group, if it should be, then HP, help me to do it. And, I raised my hand and told the story, including that recent decision.
And, it felt damn good. I was able to laugh about the cause and effect - pray, but look out, never know what you're gonna get! Able to relieve some of the pressure of the day-long crying. Able to admit that I cried, that I lost power and control, that I was humbled, that I was struggling with life circumstances, and that I needed help.
Tuesday, January 18, 2011
Comments
Heh. Some of you might remember way back, when a religious fanatic from Wisconsin used to comment profusely regarding his pointless observations and bible-thumping. Well, like Jack from The Shining, he's back. Comments for anonymous posters have been turned off. If you'd like to comment and remain anonymous, please consider coming out of your shell, dear friend.
In the meantime, have a lovely day to those who respect me for who I am.
In the meantime, have a lovely day to those who respect me for who I am.
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