Life changes fast. Life changes in the instant. Joan Didion wrote these words shortly after her husband sat down to dinner and, moments later, died of a sudden heart attack. She didn’t alter them, choosing to open her memoir The Year of Magical Thinking with those unedited sentences, teasing them out as she tried to make sense of grief in the wake of her husband’s death. It’s curious, her use of the word “the” before “instant” – denoting an absolute specificity, no matter how ordinary this moment may be.
My instant came early in November, and these were the first words I wrote shortly after returning home from hospital two weeks later:
It was a Thursday. I was in an ambulance, and Andrew was up the front with the driver. An older guy – bald, serious – was sitting at my feet.
He told me it was okay. I was on my way to the Royal Prince Alfred Hospital. They were going to examine me.
Apparently I’d had a total global seizure when I was mowing the lawn.
It was an instant as prosaic as lifting a fork to your mouth to eat dinner; it was also the instant in which my life was fundamentally and irrevocably altered. Andrew is my partner, though nothing else in this moment was familiar to me.
As I waited in emergency, I began to recall the moments before my fall, the time leading up to that dividing line, but I have never been able to get myself right up to the instant in which my illness first revealed itself. Initially I remembered the impossibly blue sky; next there was the furry texture of the silver leaves of a plant I was pruning; then I recalled greeting Andrew when he came back. Each are isolated visions in a dream full of saturated colours, the buzzing of cicadas, and the sweet smell of grass. I have no memory of just before the seizure.
Throughout that first evening in hospital, doctors and nurses came to examine me and question me. Besides the fact I had difficulty speaking, and I couldn’t recall the prime minister’s name (they all joked about that one), I didn’t think anything was seriously wrong.
I was surprised when they wanted to keep me in overnight. At some stage they scheduled a brain scan, but I don’t remember actually having one. Shortly after, the neurosurgery team came to my bedside.
They had detected a brain tumour. They were going to have to operate.
Six days later I had a craniotomy.
Although the operation was a success in that it removed all of the tumour, the surgeon was blunt in his prognosis. I had a stage 4 glioblastoma. It was sitting right on the language centre of my brain.
There is no cure, he told me. The best I could hope for was two to five years if I underwent chemotherapy and radiotherapy. Without treatment, it would be liable to grow back in about four months.
There was no indication that the tumour was there prior to my seizure, except for the fact that I had noticed a slight difficulty in finding the right words. At the time I put it down to turning 50, and the stress of putting my mother in a home. Later I’d wished I’d paid more attention to it, but I was never someone who was fearful of cancer. I didn’t worry about any illness or grave misfortune striking my family or me.
This was partially because I felt I had been dealt my fair share of bad luck when I was growing up – my brother’s mental illness and my father’s violence made for an unhappy childhood. I always assumed this had given me some kind of cloak of immunity, shielding me from being struck down by serious adversity for the rest of my life.
It was a silly notion. When you enter the land of cancer you also enter the land of statistics, from the likelihood of the operation further damaging my speech, to the calculated risk of radio and chemo, to the possibility of defying the odds of living more than two years. Bad luck in childhood has little if any bearing on the statistical probability of being diagnosed with a terminal illness at 50, barring some kind of demonstrable cause and effect.
So, how did I deal with this news? As I write this, I am aware of the fiction in the past tense. I am dealing with this news, and my response changes daily, even hourly.
In the fortnight I spent in hospital I initially clung to the hope that there had been some kind of mistake. As more and more information was gathered, from the initial scans, to the operation itself and then to the final pathology, it became clear there was no error.
I wept a lot. The seizure, the surgery and the after-effects of the anaesthetic, as well the Endone I was on, contributed to my tears. Nurses and social workers constantly asked if I needed to see a counsellor. One particularly kind nurse told me that of course I was going to weep. It was okay. I was dealing with a lot, she said, and I should just go easy on myself.
I also kept thinking it was all a dream. A clichéd response, I know, and one that surprised me with its force. At times, I really believed someone would wake me up to tell me I didn’t have cancer.
At other times I attempted to rationalise, to intellectualise, with a kind of illogical logic. No one knows when their time is up, I told myself. My odds have been considerably shortened against having a long life, but I could be hit by a car tomorrow. In fact, on the night I came home from hospital I almost choked on a fish bone, and the possibility of having gone through a craniotomy to be felled by a sliver of salmon bone was too much.
Sometimes I had hope. I still have hope. I cling to stories of people surviving against the odds. My GP told me that a lot could happen in medical science in the next couple of years. Your tumour is an unwelcome guest that you can’t get rid of, she said, but treatment may develop to such an extent that you can live with this guest. It’s happened with the HIV virus, she said.
At other times I am overwhelmed by sorrow. I feel like a transparent but impenetrable barrier separates me from the living world. I have crossed the mythological river and I am already dead, interacting with the living but never really being able to join them again. And I am envious, so envious, of the people on the other side.
When the surgeon came to deliver my diagnosis, he said it wasn’t good news, he couldn’t deny that. But think of it as an opportunity to reprioritise, he told me. You need to think about what matters to you. Most people never do that, he said.
Three weeks later, at my follow-up appointment, I thanked him. I had found some solace in his advice. I had realised how much I loved my life and how blessed I have been. I have love and friends. I have work that I enjoy. I have never suffered for lack of anything. And I am wary about sounding like a Pollyanna, because so often when you are in the midst of life, and even here on the periphery, you can be overwhelmed by the day-to-day anxieties.
I also realised how little I wanted to alter my life, even the mundane aspects of it. It is the ordinary that gives me an anchor when I despair: sweeping the floor; hanging out the washing; weeding the garden. Although
I never mow the lawn now.
A doctor friend of mine told me you never become immune to delivering news such as the news that was delivered to me. He also told me that he was consistently surprised by people’s strength in the face of their mortality.
In the months or years to come, I will probably have to hear worse news. I hope I will have the strength I need. But for now, I am trying to live alongside this unwelcome guest, a guest whose presence cannot be ignored, and must be accommodated in the best way I am able.
This is the first in a monthly column Georgia Blain will write for The Saturday Paper.
This article was first published in the print edition of The Saturday Paper on Jan 30, 2016 as "The unwelcome guest". Subscribe here.
The Unwanted Visitor
When you are growing up you always hear about sweet sixteen’s and coming of age stories, but no one ever really warns you about a period. They never tell you that it is an inconvenient transient that knocks on the doors of your ovaries once a month to pay you a week’s visit. My introduction to this wonderful visitor came from my mom giving me a book filled with numerous details about this life-altering guest. It mentioned that this was the best thing that could ever happen to me, and that this was just the transitional stage from being a girl to developing into a woman. Reading over these helpful words I thought to myself, “Wow! This seems like it wont be too bad.” But what a fool I was, especially being the young, ripe age of nine. It would be two years later that my transient guest would come.
Little did I know that on the evening of August 19, 1998, just creeping out of my birthday, I would be bestowed my life-altering “gift”. I was, permanently glued to the mesmerizing alpha waves that are destroying my mind. Yes, I am talking about television. The usual routine for me during the summer included staying up until the waning hours of the morning. This was my test for the future. To see whether I could stay up late and be able to “hang”, and not embarrass myself by getting a severe concussion due to the bar running into my face as I was trying to lay my weary body because of exhaustion. Getting off topic here; it is about ten minutes shy of diving into the 20th. Slouching directly in front of the bright transfixing glow of MTV programming, the strangest feeling was happening to me… down there. Now it was not strange in the sense like a gas bubble gurgling in my stomach. This was different. Pressure was being put on my pelvis, and I couldn’t figure out what was causing it. Stupid me, forgetting everything that I was taught, the idea of my guest arriving on my birthday was far from my mind.
Just then, there was a thick trickle flowing in my pants. However being half asleep and talking with the sand man, I did not realize what had occurred until the pressure was finally released and a dampness was left behind. Confused, I looked toward the south and asked myself, “I didn’t just pee myself?” Shamefully, I walk to the bathroom, cussing out the sand man for distracting me; I go to check out this wetness. In the bathroom, I pull down my pants and look. WHAT THE…? Is what I say as I start to have a slight panic attack inside my head, but I was too sleepy to go crazy and get excited. Still in awe of the recent discovery in my draws the matter at hand was, I just got my period. What a birthday present.
I started my trek towards my mother’s room to inform her. Every step that I took was different than the one before. Even though I was tall like a woman should be I still walked like a girl. However with my newfound gift, now I am walking as a woman. As I walk into the darkness that enveloped her room I creep up to her like the lioness to her prey, about to pounce her with good news. Ironically I was not so nervous about telling her I had my period; it was waking her up out of her deep sleep that troubled me the most. Watching her sleep so peacefully, and snore so monstrously, it was eating at my consciousness to wake her from her sound slumber. As serious as your daughters first period is, I think this was cause for a disruption. So with a friendly tap I try to wake her. That did not work so I try again with another tap; this time I give a forceful poke to her arm which woke her with a jolt and a disapproving face. Frozen to the floor I tried to open my mouth to tell her what ailed me. I opened my mouth and out came air. Nothing was coming out! In the dark I could tell by her wrinkled brow that she was getting annoyed by my presence.
“What do you want, Courtney?” angrily slurs out of her tired mouth. I try to find the words to tell her, so I slowly blurt it out with one big breath.
“Mom… I think… I… got my period.” Now I wait for her reaction, now that I had finally woke her up.
With every word my mom became more and more alert. Her eyes would get wide and her mouth would get even wider with excitement. The wrinkles from her brow slowly smoothed themselves out and started to turn into laugh lines. She lunged out towards me, arms spread wide to let me receive her excitement.
“Oh Cookie! Congratulations!” she said as she gave me a bear hug.
At the time I did not understand why I was being congratulated on soiling myself in a very uncomfortable way. In school no one talks about getting their periods, even thought you know that they do, but it is kept very silent. However I could never picture myself getting mine. Springing up out of her bed she leads me to the bathroom to show me the proper way change the sheets for my guest. She gives me one more hug before she goes to bed. I think she was enjoying this more than I was. After she leaves me to finish the job she showed me how to do, I walk quietly back to my television. I fall into the safety net of the couch and assume my previous position in front of the T.V. continuing to watch the MTV programming as if nothing had happened. This was not a big deal for me.
As the months went by the visitor would come and go continuously. At times it would come quietly and peacefully. Other times it would bang furiously and be the most horrible house guest I would ever come in contact with. Sometimes it would bang and rock my little body so much I would have to stay home. Entering the sixth grade was not fun. With my transient visitor coming every month it was hard to feel young. However more often my transient visitor would come more and more often than it should have. Instead of visiting for a week out of the month it would come just about every two weeks. Now that was not normal. However I thought nothing of it; I thought that this was the way that it was supposed to be. Before I knew it I was more tired than usual. I would take long naps after coming home from school. My appetite grew short and throughout the long day I would seldom eat a thing. My mother also could not understand what was wrong. First she blamed it on my diet, and then my sleeping habits, but nothing could explain what was wrong with her baby girl. She asked all her friends whose children had grown up for advice, and they all told her that “This is just a phase. She just can’t keep up with how fast she’s growing and it’s making her exhausted.” With that in mind I felt that this was a normal stage in my life; with getting my period and all. However my symptoms were getting worst as my sixth grade year rolled on. Neither of us could understand what was wrong, but we were soon to find out.
Towards the end of my sixth grade year things concerning my transient visitor stayed constant. It started to visit more than it should have and its stays would get longer as well. The toll that it was taking on my body was starting to appear slowly but surely. The color in my face slowly started to whiten. My eyes became sunken in, and luggage bags began to establish their own institute under my eyes. Things finally came to an abrupt halt one weekend while visiting my father’s house. Waking up was a hassle that morning. I would constantly wake up and then go back to sleep; for two hours. Food was eaten seldom between the naps of the day. My father noticed there was something wrong, but he never jumped into action. He figured that all I really needed was to get out of the house and get some fresh air. My father is one of those country raised men, who feels that the best medicine for everything, is some fresh air and hard work. I got the fresh air, but instead of the hard work, it was a cramped trip to Blockbuster in my dad’s truck. Matthew, my little brother jumped out of the car and ran to the store, yelling for his favorite movie, then my father and I followed suite and also got out of the car. All of a sudden me and the ground became close friend, literally, and I found myself falling to the floor as soon as I got out of the truck.
“You okay?” My father yelled from the other side of the car.
“Yes.” I nodded a weak and feeble reply.
He took me falling out of the truck as clumsiness and headed towards the Blockbuster after my brother. There was just an awful feeling in my stomach, and walking into the store hurt my eyes. I couldn’t keep my balance as I followed my dad and brother around the store. It took a stranger to come and tell my father that there was something wrong with me when he noticed the discolor in my appearance. My father came up to me and held me up saying in his sweetest voice, “We’re on are way home, just hold out a little bit longer.” I nodded in compliance, but it was getting hard. Luckily the line moved quickly and we were out of that store. The trouble started when we got to the car. Right before my father was going to hop into the car after me I threw up all out the side of the door. I looked like one of those drunken college kids that you see in movies as they drank themselves silly and are now paying the price for it. As soon as we got home I hit the couch hard and fell into a catatonic sleep. Three hours later my father woke me up and asked me if I needed to go to the hospital.
Thinking out loud, “I think that you knew that when I threw up out the side of your car.”
He gave me an evil look and replied, “Alright, smart ass. Let’s take you over to the emergency room.”
I would think that when you see the Emergency room that it would be empty and that people would be moving swiftly in and out because doctors are taking care of people’s emergencies. However that was not the case that night. Nine o’clock the family walks into the ER and it took us three hours to actually be seen by a doctor just so I could get a lousy cup of lemon Gatorade. When the doctor finally came to see me, he asked me all these questions about my visitor, and how many times he would visit and how many times I would have to put down a new rug for it. He studied all my symptoms and took my blood while I waited another hour watching my little brother play with the buttons on the bed. Then the doctor came back. The expression on his face was not the one I was expecting. The creases on his forehead let me know right away that something was up. He told me that due to my visitor coming so often that I was loosing a lot of blood, and that was causing me to be so tired. Then he just threw it at me, “You have anemia”. The tears started to flow down my face. My dad bent over his seat next to the bed and rubbed my back. I’ve heard of anemia before and I knew it was some kind of disease, and I asked, “Am I going to die?” the doctor let out a laugh and replied in a sincere, “No. The only problem is that your iron in your blood is low, and you need to get it back up”. The tears were still flowing down my face, and then my brother lets out a cry. I looked over and saw that my three year old brother was feeling my pain and felt bad for me. We all laughed and looked at my brother. “What are you crying for?” asked my dad as he let out a chuckle. Even though some of the shock from the news was gone, I was still concerned. I was sick, and this was a sickness that I knew I was not going to get rid of anytime soon, and it was all because of my transient visitor. Then I thought back to my mom congratulating my on getting my period. What crap! This transient was the reason I was in this mess in the first place. What a gift.
Now that I look back on my transients’ first visit I do not look at it as a blessing, a gift, or some miracle bestowed upon me by God. It has caused an inconvenience to my life. At the end of my sixth grade year I had to get a transfusion because my guest would show up at the door too many times, and my blood count became extremely low. The normal blood count is 13.2; mine was 7.5. It was the worst weekend of my life, because I was poked and prodded with needles and I.V’s. After that I had to go on birth control just so I could regulate my transients’ visits. Even after everything was squared away with its visitation, my transient would show up and just bang on my doors. This was very uncomfortable, especially in the middle of an important lesson. Many times I would have to leave school, or just not show up period. It was the worst thing that could have ever happened to me. However, I could not put down my visitor entirely, because with out it I could not progress and be the young woman I am today. I would not have the ability to give life.