Counting Breathes
“What do you think her wishes are?”
“Are we doing the right thing?”
“How do we live with our decision?”
My sister Pam died friday afternoon at 1:20 pm. It wasn’t sudden. It wasn’t unexpected. We just weren’t ready.
Pam had a hard life. At the age of 12, she fell off of a bicycle my uncle had shown her how to ride. She fell head first over the front of the bike and fractured her skull. Although she would heal from this injury, it wouild lead to lifetime of seizures. Random moments that would erase her memory temporarily and required a day or so for her to be herself again. Another result of this condition was hydrocephalus, a problem that would come back to haunt her later in life.
I was born when Pam was in her late teens. My mother worked full time and as a result, Pam took over the responsibilities for me in my early childhood. My father, during my early youth, was in the final stages of his cancer. He died in 76 when I was 4 years old. Pam became like a second mother for me, helping raise me while mom worked.
All of my best childhood memories involved Pam. Even my first kiss was her fault: she left me alone in her car with a little girl called Randa. We were in kindergerten at the time and when she pulled into the Star Market parking lot to run inside and grab cigarrettes. We pretended to be asleep and when Randa put her head on my little shoulder, I stole my first kiss.
Pam stood all of 4 feet and maybe 9 or 10 inches. By 4th grade, I was taller than her. She had an old Plymouth Fury, a huge bomber of an old car that she drove by staring through the steering wheel. If you saw the car from a distance, you would swear there was no driver. Whenever I was taken clothes shopping as a kid, she would grudgingly come along because she bought most of her clothes in the kids section too. She had long straight black hair, a throwback to our Native American heritage. She was always proud of her waist length hair, something she had til her dying day.
Many times, my sister would take me on road trips. I had seen her use checks before and with no concrete understanding of how money worked, whenever she said she couldn’t buy me a donut or a soda, I would pipe up and say,”Just write a check for it!!” She thought that was hysterical and would tell that story over and over. We would take day trips to the white mountains, hang out with her biker friends and spend long days just driving. She had a little red portable 8 track player that she kept on the front seat between us. When we would get someplace where we couldn’t recieve her favorite stations, she would pop in an 8 track. I remember “Bat Out of Hell” getting alot of airplay one summer.
When I was 9, I went with her and a bunch of other people to my first concert. I remember several bands playing that day but the one that stood out was The Clash. I did not understand their importance then, but this one concert changed my whole view of what music was and what it did for me. I thank Pam every day for that, whether she meant to or not, she profoundly shaped my tastes in music.
In the mid 80’s, while my sister and her future husband were living out in Kittery Point, she had a car accident. The accident shattered the passenger window next to her face. Tiny shards of glass became embedded into her cheeks, pieces so fine that for years afterwards, a piece would occassionally surface over and over again. Her complexion changed from this experience. Due to the accident, her cheeks had the appearance like she had bad acne: she wasn’t disfigured, but in her mind, she no longer considered herself pretty. She would get upset whenever someone took her picture, doing her best to hide her face. This went on for years until her wedding day to Richard. I was in 8th grade and for the first time in years, she allowed me to take her picture. She was beaming and happy that day, something I had not seen years. I look at the photos now and remember that day like it was yesterday.
When I was the first person in the Parnell family to graduate from high school, she cheered the loudest. I remember being up on that stage and staring at the blank faces of my fellow students. They had all been cheering and applauding everyone before me but when I hit the stage, dead silence. My heart sank: people I spent 12 years with and even then, at the moment of our departure from that wretched experience we call high school, even then they had to play the popularity card and shun me as they had done for 12 years. For a moment, I wanted to grab the mic from Principal Zito’s hands and scream “GO FUCK YOURSELVES!!!!” at my classmates. Just then I heard a loud “WOOHOO!!!” coming from the bleachers, and there was Pam, jumping up and down with her arms in the air, waving to me. I smiled, took my diploma and never looked back.
College years and my 20’s are a bit of a blur for me. I started to build a life for myself and relied on my mom for updates about the family. Slowly, I started to realize all was not well with my sister. She hidit well from me.
Since the car accident, she had steady pain in her back and neck, pain that would periodically creep up on her. She saw many specialists over the years but none of them knew what was wrong. And then the seizures started increasing in frequency. Thats when we found out that, due to her hydrocephalus, there was an excessive amount of fluid in her skull and the pressure was beyond a tolerable threshold and they were forced to put a shunt into her skull that drained fluid into her stomach. She had many operations to do this because, due to her accident as a child, her brain had healed abnormally, clinging to the sides of her skull in places, leaving little room for the fluid and even less room for them to safely put in a shunt. During this time, she started to lose weight.
When the shunt was finely successfully implanted, the doctors found another problem. With the countless mri’s she had to endure, several showed damage to her spinal column in her neck. Another round of operations to try to correct her neck. More weight loss. The final operation was the worst: they removed tendons from the front of her neck. Without the tendons, she could no longer hold up her head on her own. She walked around with her head slumped over and to the side. She lost more weight.
Then 3 years ago, she had a stroke. We all thought we were going to lose her then. In the hospital room, she was surrounded by friends and family who loved her. She was mumbling to herself alot, like she in a conversation with someone. Nobody knew what to make of it. She was unconscious that first day but the second day was different.
I don’t know why, but as I was racing up to visit her in the hospital. I stopped off and got her favorite coffee: reg coffee, extra extra. No flavors for her. As she told me once “Hazelnut and french vanilla are for pussies!!!!”. She was never one to mince words. Armed with her coffee, I entered her room to what we all thought was her deathbed. I put the coffee down next to her and she opened her eyes.
“Boy that smells good!!” she said, much to everyones shock. We got her a straw and she happily sipped her coffee. She had no idea what day it was but she explained to us that she had spent what she thought were days arguing with Grandma. Grandma had come to visit her and told her it wasn’t her time and she needed to go back and no matter what Pam said to her, Grandma refused to listen and told her she was needed elsewhere and reluctantly, she had come back. At this point, I should add that Grandma had been dead 33 years. Whether this all happened in her mind or what, I would not begin to guess.
Her rehab was slow, painful and for every step forward, there were several steps back. She was confined to a wheelchair but was resolute about walking again, managing to get herself upright in a walker and around counters. Her body was wracked with pain 24 hours a day and as a result, she had an oxycontin pump installed. This cracked me up to no end because the thing was on a timer. She would be in midsentence telling you about something important when the drug would kick in and she would stop and just giggle for a minute and forget what she was talking about.
Due to the stroke, not only was her mobility limited but so was her short term memory. She would forget little details at first, which was no big deal, but as time went on, she couldn’t recognize names right away or voices. I always had to add “your brother” when I said my name to her. Then she would perk up and say “Hi Brother Dear!!” The memory loss also resulted in the police breaking down the front door of the house on three seperate occassions. She had an emergency alert button on her phone that immediately summoned the police to her house. She would forget what it was for and press it, reulting in the police showing up at their downstairs door and since she had no way of answering, the cops would just break in. Three times this happend and three times, poor Richard would have to install a brand new door.
She was a fighter. She was stubborn and refused to give up on herself. And her husband Richard was a saint and a half! He took care of her so well. A truly remarkable man who did what none of us could have done and when he couldn’t handle things, he had caregivers who would look after her while he was working or away on a training trip for work.
Tuesday morning. This week.
I wake up to my cell phone ringing. I grabbed it and ran outside in my bathrobe so I could have a signal. Richard never called me unless it was important. I flip open the phone and all I hear is hysterical crying. From Richard, the saint, the man who could handle anything. I knew it was bad. He said they were at the ICU at Frisbie hospital and the doctors told him to get family there as soon as possible.
She had been taken to the hospital because she was running a fever. In the ambulance ride over, she began to complain about her breathing. Suddenly she wasn’t breathing and she asked for them to insert the tubes into her lungs so she could breathe. That was the last thing anyone ever heard her say. Her fever spiked, her breathing now dependant on a machine, she slipped into a coma. When we got there, my tiny little sister was covered in tubes. Her breathing caused her body to heave up and to the left. Every breath looked labored and painful. Occassionally, she would grimace, but as those first few hours went on, all expression stopped.
My mom was ashen wehn we first entered the icu. I thought she was going to fall over so I led her to a chair next to the bed where she held my sisters hand. Richard was in the corner of the room. I had never seen him like this. I think he knew then. Pam was still fighting but her body was losing whatever war it was raging.
Wednsday
I had to work all day but kept my cell phone close by me. Richard called to let me know she had stabilized. The doctors also had a good idea what was causing this. In the past year, Pam had been permanently cathaterized since she could not control those functions. An infection from the cathater had spread to her bladder, to her kidneys. Her tiny body was fighting a massive infection.
Thursday
Things got worse. Just when she had been showing signs of some minor improvement (returned warmth to her extremities , lowered blood pressure) the infection spread throughout her entire body. Her kidneys were shutting down. Sitting in the icu, the doctor explained about DNR. I didn’t want to listen. I wanted some sign from Pam. I wanted her to open her eyes. I wanted her to see me, smile, hear her make fun of my weight, my hair, something. This mass of tubes that shifted with every single wracking breathe was not my sister. My sister was no longer there.
Friday
Richard calls us at 8am.
“Come up now.”
When my mother and I arrived, we knew that what we didn’t want to face was finally here. My sister could no ,longer breathe on her own at all and her heart was still beating due to a complex solution of drugs that I did not understand. I crashed into a chair. One of my sisters hands was sticking out from under the blanket, swollen, mottled, the tips turning purple. Looking at her face, her pallor had become a sort of yellowy waxen appearance. Every breathe still caused her body to heave to one side but there was less a sense that it was bothering her. I started to cry. The doctor came in.
“What were her wishes? Did she wish to have these extraordinary measures taken for her benefit?”
Richard looked at me and then to my mom then back to me.
“What do you think? Would Pam want this?” Richard asked me, the tears rolling down his face into his long beard.
I didn’t know what to say. How was this my decision? Why did my opinion matter? I said, “look, I’m not making this decision. Either we all make this decision together or none of us make it. I can’t be the one to do this alone.”
The doctor slowly explained our options to us. First of all, they could keep going with the current treatment until her heart gives out. Her body, in an attempt to fight this infection, had raised her core temperature to 103 degrees and her heart was racing at a pace that was causing other functions to shut down. To prolong this treatment would still leave her in a coma and when her heart failed (not if, but when…) the means they would have to resuscitate her would fruther damage her body and only end up weakening her further and she would more than likely never come out of the coma.
Our second option was surprisingly simple: stop treatment. Stop the drugs, stop the breathing machine, administer morphine and, as he put it, let nature take its course.
We chose simplicity.
First they stopped the drug treatments. We sat and watched. We watched and shared good stories, talking to Pam and each other. We kissed her forehead and thanked her for the happiness she brought us. Then several nurses came in to remove the breathing tubes, the tubes for draining fluid from her lungs, her stomach, her chest wall. Suddenly, as the nurses left the room, I could see my sisters face again. She looked peaceful finally. No pain, no tubes, just Pam asleep on the pillow. Her breathing without the machine became far less labored. I smiled through my tears.
We watched the monitor and Pam. The room became very quiet. The monitor slowly started to show the reduced heart rate, reduced oxygen saturation and reduced breathes per minute. We watched. I found myself counting her breathes, watching each rise and fall of her tiny chest.
1
2
3
They administered morphine. The rising of her chest became shallower.
4
5
6
Mom said goodbye through the tissues she had wrapped around her nose. Richard clutched her hand. I felt like I was going numb, my voice sounded distant to me like it came from down the hall, not part of me at all but some echoey hollow meaningless noise.
7
8
I think I said goodbye.
The nurses came in to shut off the machines. We sat with her for an hour, discussing everything from cremation to what kind of remembrance ceremony we should have. We all cried together and finally, after every nurse had paid their respects and expressed their condolences, we left.
In the parking lot, there were talks of phone calls and appointments. Promises to get in touch soon, exclamations of concern “If you need me for anything, just call me!” I told Richard. We parted ways. I took mom home, I cooked her dinner and fielded a few phone calls from well meaning relatives who wanted all the details. After the fifth phone call, I couldn’t take it anymore and my mom took over. I found myself going to Boston. I needed something to distract myself. Sirsy were playing at the Kinsale in Boston and I decided I had to go. I had no choice. I needed to be away.
Meeting up with Mel, Rich and Jessica and helping them set up a little was like therapy: keeping myself busy. H finally arrived. She had been a great help through all of this since she had been part of similar circumstances involving hard choices like mine. She ran up and gave me the biggest hug I have ever gotten from such a tiny person and I broke again. I started crying but this time it was good. Made me feel better than I had all day. I felt alive and the numbness that had taken over drained away. I enjoyed a wonderful nite of good music, good food and even better friends. I found myself with something I didn’t know I had: support. I was humbled by my lack of perception of the importance of these people in my life.
At the end of the evening, after many drinks (mostly ice water, right J?) I headed back home. Promises were made to hang out again soon. Hope was there that it would all work out. I smiled, genuinely happy for the first time that week,being with these people I have chosen to have in my life. Or did they choose me???
On the drive home, I thought of my sister Pam and how she would have enjoyed that show. She always loved live music and would dance up a storm back in the day. She had so much spirit and life, even when her body failed or betrayed her, you still felt her fire. I know she would have approved my going out last nite. I felt her with me, laughing at my friends jokes, in the car with me on the long ride. Think she was poking fun at my new diet and my lack of progress on my gut. She always teased me.
Finally, at home in bed, I found myself drifting off to sleep. My mind concentrated on my own breathing, counting off the moments until darkness finally took me. I can only hope that my sister drifted off as peacefully.
1
2
3
…..
As you can see by this example, I’m more than adept at building houses out of available materials…
So after everyone in my family has been taken care of…and after I’ve quit my job…and after I’ve moved in to my new seaside villa…and after I’ve whipped myself into shape with my 24 hour on call personal trainer…and after I’ve taken care of my good friends needs…and after I’ve bought my friends bands new gear and funded their next album…and after I’ve set up a scholarship foundation for underprivileged art majors…after ALL of that, I would load up the car and fullfill a lifelong dream. I would drive out to Chicago and find Old Route 66 and drive cross country. I have a fascination with all the old kitschy stuff that cropped up along this once major highway that runs from Chicago all the way to Santa Monica. One of the purest joys in my life has always been just hopping my car and just driving and seeing all the old Americana, being able to experince a truly “American” experience (the fabled love affair with the automobile and all the road side attractions that helped build) and maybe writing a book about my experience or at the very least, do some photography and painting along the way. One thing I would have to add to this experience would be stopping along the way and visiting with the many amazing people I’ve met online over the years. 🙂
I have to admit, the idea of being featured on a cooking show would definitely intrigue me. Whenever I cook for my friends, I have this tendency to talk out loud about what I’m doing and how I’m doing it, how long something takes to cook and how to properly dice something. Aparently, this is an unconscious habit that I do even when I’m alone. Ok, I know that sounds like I’m a little nutty, talking to myself while I cook, but you wouldn’t be reading this if you didn’t enjoy some of my eccentricities. 🙂
Monhegan Island would be somewhere near the top of my list. I loved this place from the first moment I set foot on the island. I wrote about my first experience there here, here, here and here. That one experince made me a fan. Sadly, I’ve only been back there twice since and only on the same kind of day trips. Eventually, when I get the free time, I plan on spending alot more time there. It has long been a refuge for artists, the Wyeth family had a home there, Hopper painted here and countless other artists have immortalized this tiny little slice of heaven. Isolated as it is in the Gulf of Maine, it would take alot of committment to want to live there year round. A healthy love of all things seafood and a stronger set of sea legs would be a start. But the idea of living and breathing art for the rest of my life? Yeah, thats pretty tempting….And if I had a house on the island, I would want an ocean view (not hard to do on an island) with a large studio space custom built with huge bay windows facing the ocean. All the rest would be details, but a massive kitchen to cook and entertain in and of course my own mini movie theater. 🙂
I think I would be the happiest man in the world if I could help my friends in Sirsy and Lourds. I would love nothing better than doing photography and and promotional work for them and helping in some small way. And I would definitely do this on breaks from living on Monhegan Island. 🙂
Half Full or Half Empty 