I’m sorry I failed you. And I have continued to fail you after you are gone. You are the hole in my heart that continues to bleed. I pick at the scab almost daily. Keep it bleeding so I’ll never forget. Like hitting my head against a wall as long as there is a bruise, as long as there is pain there I promise I wont forget.
You were my responsibility. I adored you, adore you still, adore your memory and hate you for leaving me. I sit here unable to see my computer screen through the tears. How many hours have I spent gasping for breath, desperate to change something in our lives. Just to be able to hold you one more time, to study every feature in your face because the horror in my mind is losing you bit by bit.
My biggest betrayal was of you Sammy. I have lied to people about you. Told people, not many, but one is too many to betray you….. Told people I was an only child. And deep inside part of me ripped open at the awful hideous thought that I wish I had been. I wished once that you hadn’t been born. I hated you for needing me. For being too inadequate to be what you needed. I remember the nights when he came into my room and you stood behind the doorway and peeked in and saw him hurt me and how you would run to your closet until you knew he was passed out in the livingroom. And sneak back in and curl up in bed with me. I hated that you clung to me. And I loved you for it.
You were so little, so cute such a brat. I had no idea what you needed, I had no idea what I needed. So many days I woke up and the only motivation to keep going was your damn insistence on toast with peanut butter. To this day, I can’t deal with that smell. It turns my stomach and takes me back to when you were 5 and I was 8. you were so independent. You would refuse to hold my hand when we crossed the street. You refused to clean your room. You insisted on putting your shoes on the wrong feet and wore all my clothes. I will never forget you screaming at me… you’re not my mom! And how I would scream back that I was sure glad of that. Then you would collapse in a fit and cry and beg me to tell you stories about her. Stories I made up because I didn't remember her either. So I told you stories that made her out to be strong and beautiful and gentle and she always saved us and she never left us. That she was actually in a foreign land where she was the queen and we were princesses and she was rebuilding her country and soon we would get to go live with her. And we would never be away from her ever again. And we would have servants to make your toast and clean our rooms. And he wouldn’t be there… ever. And it was never night and we had guards to keep us safe and when it stormed outside, we could run to her room and crawl up in her huge bed and brush her long hair and she would tell us stories about the war she fought to save her kingdom. And we would fall asleep in her arms feeling safe and loved.
But it was my arms you fell asleep in and I’m sure you never felt safe, though I hope you felt my love for you, through the frustration and squabbling. I’m sorry that I couldn’t make that dream come true for you Sammy. I’m sorry it was just another lie. I’m sorry I failed you so miserably. I’m sorry I never learned to French braid your hair like Mrs. Harris did.
I miss you. Are you out there? I’ve looked. I’ve tried Sammy.
How I hated knowing you saw me begging him not to hurt you. Seeing you biting your fingernails not sure how to respond. It all worked so well. Maybe it was mom…. That he told me I looked so like her, that he didn’t somehow want to hurt you. But I knew that some day, in a rage you would be in his path at the wrong time. He lied to so many people about us. Our lives were like that fairy tail I would tell you about mom, except… they never seemed to turn out right. This shadowland of running, moving when he got in trouble, going to school, being pulled out, having no friends, no contact. It was like a storm building.
I remember when it hit. I see it everynight in my dreams. Every night. I can smell the pizza and hear him screaming at us to shut up and go to bed. I remember fighting with you over using too much toothpaste and dropping it all over the sink. I remember you spit at me and I slapped your face. Will that forever be my last memory of you? Slapping you? Telling you I hate you. You’re such a baby, you don’t do anything right! Those words ring in my ears. Stomping off to bed. It seemed like years that I heard him walking down the hall. I got used to playing dead, acting sick, pretending it didn’t hurt, separating part of my brain from the rest of me. But when I heard him say your name and walk past my door, my heart stopped. I went cold inside. I had no idea what to do. I ran out my room and into the kitchen. I didn’t even have the intelligence to grab a decent knife, just a stupid little vegetable knife, the first sharp thing my fingers touched.
What was I thinking? I dont ever remember making a decision, I dont ever remember wondering how to approach the situation. I dont remember wondering what would happen, I dont remember anything but flying into a rage. Running into your room and throwing myself at him. I wonder if that makes me like him, that rage I felt inside. Was I capable of driving that knife into him? I never even thought about it. I have thought since then, with regret, that I had not gotten a bigger knife. If only I had gotten a bigger knife, if only I had the strength to sink it into his neck. If only someone else would have done it for us. If only mom would come back from her foreign land and take us home and keep us safe. If only he had killed me years before and spared me the pain of this night.
I remember the shock in his face, one of the few fleeting moments of power I ever felt, was knowing that I had stunned him. His little beaten dog had gotten the nerve to rise up against him. But the feeling drained out of me fast when I realized I had his full attention.
We had explored this new/ old house when we moved here 3 months before, having run from some mystery problem that father always had. Why did we tell him about the cellar outside behind the shed? He told us not to go there, which of course meant that was the first thing that we did. It was exciting to explore a new, dark hidden place. More exciting because he told us not to. But there was really nothing to the room but shelves that lined one wall and crumbled cement blocks scattered around it. It wasn’t nice enough or big enough to be a secret play place, it was just an empty room that we never went back to… until tonight.
I had learned early on, that the more I screamed and thrashed, the more excited he became, so that I got very good at lying still and being quiet. It was a benefit for him, that I never rocked the boat, never woke the neighbors. But tonight I was raising the roof. Maybe it was years of feeling his hands on me and seeing him reaching for you, that sent me through the roof. Maybe it was none of that but just that black blinding wave of terror that he would do to you, what he did to me.
I saw the rage in his eyes turn briefly to panic and he clamped his hand over my mouth to shut me up. So vivid that whole scene, so much of my past blanked out, why do I see this in stark detail? What force of nature hates me so badly that I remember all this so well, where I have forgotten other less painful details? I could smell the beer on his breath and smell the motor oil on his hands. I bit him and even remember tasting the tinny iron blood from his fingers. It was his turn to scream and he knocked me across the room. When he dragged me kicking and screaming into the garage I wondered what you were doing, back there in your bedroom. Or did you follow at a distance, wondering if you should watch or run? I know you didn’t follow us outside to that cellar, because I looked back for you and never saw you. In fact for years now I have desperately searched my mind for my last glimpse of you. I dont even remember seeing you in your bedroom when I attacked him. My last glimpse of you is in that bathroom with toothpaste dripping from your mouth, me slapping you and saying things I’ll eternally regret.
He taped my hands and legs and tied me to one of those shelves. He came back in and threw blankets on top of me. And he must have kicked me in the head, or hit me hard enough to make all the lights go out.
Why is it that after that…. After all that hell, is the time that is blank in my mind? I dont remember him coming and getting me, I dont remember looking for you. I dont remember asking where you were. I dont remember him saying that you were living with his parents now. I dont remember the giant hole I felt. I dont remember.. I refuse to remember. But everyday it comes back to me in this horrible circle…. I remember it all, but… I can’t afford to, so I ‘forget’. I dont remember. I tell myself that every day. Such a betrayal to you.
So awful to feel so grateful that for the next few weeks my life was so much better. For weeks he never touched me, rarely spoke to me, didn’t acknowledge me or look at me. Looking back I wonder…. Would I have rather had the rape or the sister. I am oddly relieved that I did not really have the choice.
I am sorry Sammy. I miss you so much. I am so sorry that I failed you. I want you back so badly and ….. I’m glad you’re not here to see me now.
I love you Sammy. I’m so sorry. I don’t know what I did wrong. I want to make you toast and tell you stories again. Maybe…. I need to fall asleep in your arms now.
Saturday, August 15, 2009
Friday, August 14, 2009
Jealous
Connie
We got to know each other during chemo, months ago. We are nearly the same age, she is 3 years older than I am. We got to talking, about nothing in particular, then we talked about work, we talked about food, we talked about our mutual disdain for Hillary Clinton. We disagreed on the topic of Obama, we agreed on the subject of pizza and movies. We laughed about the funky hoses in our chest as they pumped toxins into our bodies. Deadly chemicals that were suppose to cure us. There has to be some sort of statement there. Which is worse? The cure? Or the Disease?
She had a blonde bob, I had long, long hair. She was tall and round in all the right places, I am short and had a lot less curves. We exchanged phone numbers, e-mail addresses and went our separate ways. She called me the very next day. It was kind of a shock. It is kind of one of those things where… do I want to get to know someone, whose connection brings up negative stuff? But we agreed to meet at Panera and stuffed ourselves with muffins and old coffee.
We talked about the chemo mostly. All the other small talk was awkwardly out of the way. The only connection we really had was the port we hid under our shirts. Like blood brothers, or maybe it was drug sisters. She had breast cancer. She found a lump in the shower one morning and called the doctor the next day. Went in the day after that and 2 weeks later was in the chair getting her tubes in.
She was dating, a subject I didn’t really want to touch. She worked at a bank in the loan department. She hated her job, but made decent money. Her boss was frustrated with her time off work, but her insurance was good and he couldn’t really force the issue of her medical leave.
We never did chemo together again, but we talked almost every day and occasionally we would meet, usually at Panera or Starbucks.
We started to lose our hair together. There is something within a female that wants to somehow believe that we are attractive, that we possess the ability to make a man’s head turn, or frankly to turn a man on. And oddly our hair plays a large part in that. Ask almost any woman and she will tell you that she focuses a large part of her morning on her hair. So when I started to see handfuls of hair coming out in the shower I fought it tooth and nail. I first cut it shoulder length so it wouldn’t be so shocking to see those long strands piling up on the floor. Then in despair I cut it into a short bob, not unlike what Connie had started with. Connie however, totally succumbed to the process and shaved her own head and the next week proudly walked into Panera with a henna tattoo on her shiny skull. She laughed at my reaction and I laughed to keep up with her. That was when it hit me that I was jealous of Connie. How did she have the ability to be proud of what she was going through?
We stopped meeting at Panera when we both realized that neither of us were eating, and the smell was making us both nauseated. So we met at the river park walkway. She brought her boyfriend and their 9 month old Labrador. It was the first time I felt awkward around her. It was as though I saw for the first time, that she had an ongoing life outside of the tubes and needles and drugs.
We missed a week here or there over the next few weeks. We were both in the middle of being too tired to move and too sick to move too far from the bathroom. We were both trying desperately to get better. We finally e-mailed and promised to touch base and meet at the mall the next week. She called me a few days later and said that she had an appointment and we moved it to the next week.
I hadn’t seen her in a few months. I am not sure what I expected. When I saw her, her henna tattoo was gone, disappeared under her fuzzy new hair growing. She had gained the weight she had lost, she looked strong and resolved and powerful. I was suddenly embarrassed that I had lost more weight, that my eyes were hollow despite the makeup that I wore to try to hide it. My head was covered with a baseball cap. We had a ritual when we met, that we would compare heads. She came in with a bandana and whipped it off to show fuzzy new blonde hair. I tried to laugh and I clapped and reached over and rubbed her head. But when she said… your turn. I couldn’t think of a good joke to come up with, I couldn’t think of a clever way to decline, I couldn’t think of anything at that moment…. But the differences that were separating us. I took my hat off and grinned that stupid grin that explains everything and nothing all at once.
She grinned back and started talking about visiting Florida with her boyfriend. She was going to work on her tan and…. Blah blah blah…. I never heard much more of the conversation. I smiled and nodded at all the right places.
We talked about chemo again, but… she was done, and I wasn’t. We had both done chemo, that topic was old now. She was moving on. Her blood work was getting better, she was due to have a mammogram in the next couple weeks.
This time 2 months went by. We still e-mailed, but not as frequently. They were short.. Hey how are you doing baldy, type e-mails. We said stuff like, hey we have to get together again, and I think we both meant it at the time, but time was marching on for both of us. We finally set a date, we were back to Panera.
I got there early, I didn’t know why I was nervous. I sat at the window in the corner and watched her park. I quickly put my coat back on, to hide how much weight I’d lost and that my clothes hung off me. She looked wonderful. Her hair was dyed bright red/blonde and it was short, but growing well. She wore a blouse cut low to show off her figure and that the breast cancer had not won. Everything about her said…. I WIN! I suddenly wanted to sneak out the back door and call her cell and tell her that something had come up, that I couldn’t come, I’m sorry, maybe next week. But I had committed to this humiliation. I had to see it through.
Her mammogram had come back clean. She was now technically cancer free. She and her boyfriend had moved in together with their crazy lab and she was talking future. It was not a shock to me that she did not ask about the bone cancer. So I talked about shopping, which I hate, and the movies I’d love to see that I actually never really planned on seeing. I laughed and did the whole, girls night out gig. Inside I was dizzy.
Was I not happy for Connie? I think I was. I wanted to be. I did not want to see her grow weak and sick and see that grey/yellow pallor that … well, that I had. What was wrong with me? Am I so incredibly shallow, such a poor friend, that I could only see her success as a threat to my failure? Am I really that flawed and selfish? Would I have rather had her be sick just so she could be sick with me? Is that really what went through my mind? I tend to quickly tell myself … NO, I would never do something that horrid. But I am left wondering if that’s quite right. Does misery love company? Would I have been more gracious if the tables had been turned? Would I have made sure to ask her how she was doing? Instead of quietly avoiding the obvious answer.
We hugged a quick, pals hug on the way out of Panera. She said … I’ll be in touch! An obvious lie. I said, Absolutely! Another lie. Did we both know then that we were moving on two different tracks away from each other? What did I expect? If I were free today, from the tubes and the cold floors and the clinical cleanliness and the masks and the beeping and the gloves and needles…. Would I swallow my fear of this place, to go back in and invest my life in my new little friends who are still… on the inside….like prison. I sit at my window and watch visitors come and go. There is a difference when they come in… they’re on a mission, they plod forward, bent on the purpose of going into the institution… getting the name badge, going through the big swinging doors and hearing all those sounds that tell them that this place is not where people are suppose to be. This is where they keep the inmates. When I see them leave, their steps are lighter, almost always they move faster, they hold their heads up, maybe to feel the wind, smell the fresh air. They are free. I remember seeing him ride in on a flame red softail and park it on the sidewalk. I laughed outloud and clapped at him though he had no idea I was up there. He walked in the same way they all did, head down. I watched his bike for him while he was in the hospital visiting some nameless faceless person. I saw him coming out and suddenly something inside me made me grind my teeth. “Come BACK!!!” I feel like screaming….. Begging, take me with you. Please….. As he jumped the curb and got to his bike, I stood up and put my hands on the window…. please….and stood beside his bike and threw his leg over …. Wait…...please don't go… and I imagined the roar, and then he was gone. I shut my eyes and imagined being on that bike, feeling that vibration rumble through my body, the acceleration and the wind coursing over my body.
Everyone moves on. Connie, visitors, me….. Everyone moves on. I just can’t see where I’m going anymore.
We got to know each other during chemo, months ago. We are nearly the same age, she is 3 years older than I am. We got to talking, about nothing in particular, then we talked about work, we talked about food, we talked about our mutual disdain for Hillary Clinton. We disagreed on the topic of Obama, we agreed on the subject of pizza and movies. We laughed about the funky hoses in our chest as they pumped toxins into our bodies. Deadly chemicals that were suppose to cure us. There has to be some sort of statement there. Which is worse? The cure? Or the Disease?
She had a blonde bob, I had long, long hair. She was tall and round in all the right places, I am short and had a lot less curves. We exchanged phone numbers, e-mail addresses and went our separate ways. She called me the very next day. It was kind of a shock. It is kind of one of those things where… do I want to get to know someone, whose connection brings up negative stuff? But we agreed to meet at Panera and stuffed ourselves with muffins and old coffee.
We talked about the chemo mostly. All the other small talk was awkwardly out of the way. The only connection we really had was the port we hid under our shirts. Like blood brothers, or maybe it was drug sisters. She had breast cancer. She found a lump in the shower one morning and called the doctor the next day. Went in the day after that and 2 weeks later was in the chair getting her tubes in.
She was dating, a subject I didn’t really want to touch. She worked at a bank in the loan department. She hated her job, but made decent money. Her boss was frustrated with her time off work, but her insurance was good and he couldn’t really force the issue of her medical leave.
We never did chemo together again, but we talked almost every day and occasionally we would meet, usually at Panera or Starbucks.
We started to lose our hair together. There is something within a female that wants to somehow believe that we are attractive, that we possess the ability to make a man’s head turn, or frankly to turn a man on. And oddly our hair plays a large part in that. Ask almost any woman and she will tell you that she focuses a large part of her morning on her hair. So when I started to see handfuls of hair coming out in the shower I fought it tooth and nail. I first cut it shoulder length so it wouldn’t be so shocking to see those long strands piling up on the floor. Then in despair I cut it into a short bob, not unlike what Connie had started with. Connie however, totally succumbed to the process and shaved her own head and the next week proudly walked into Panera with a henna tattoo on her shiny skull. She laughed at my reaction and I laughed to keep up with her. That was when it hit me that I was jealous of Connie. How did she have the ability to be proud of what she was going through?
We stopped meeting at Panera when we both realized that neither of us were eating, and the smell was making us both nauseated. So we met at the river park walkway. She brought her boyfriend and their 9 month old Labrador. It was the first time I felt awkward around her. It was as though I saw for the first time, that she had an ongoing life outside of the tubes and needles and drugs.
We missed a week here or there over the next few weeks. We were both in the middle of being too tired to move and too sick to move too far from the bathroom. We were both trying desperately to get better. We finally e-mailed and promised to touch base and meet at the mall the next week. She called me a few days later and said that she had an appointment and we moved it to the next week.
I hadn’t seen her in a few months. I am not sure what I expected. When I saw her, her henna tattoo was gone, disappeared under her fuzzy new hair growing. She had gained the weight she had lost, she looked strong and resolved and powerful. I was suddenly embarrassed that I had lost more weight, that my eyes were hollow despite the makeup that I wore to try to hide it. My head was covered with a baseball cap. We had a ritual when we met, that we would compare heads. She came in with a bandana and whipped it off to show fuzzy new blonde hair. I tried to laugh and I clapped and reached over and rubbed her head. But when she said… your turn. I couldn’t think of a good joke to come up with, I couldn’t think of a clever way to decline, I couldn’t think of anything at that moment…. But the differences that were separating us. I took my hat off and grinned that stupid grin that explains everything and nothing all at once.
She grinned back and started talking about visiting Florida with her boyfriend. She was going to work on her tan and…. Blah blah blah…. I never heard much more of the conversation. I smiled and nodded at all the right places.
We talked about chemo again, but… she was done, and I wasn’t. We had both done chemo, that topic was old now. She was moving on. Her blood work was getting better, she was due to have a mammogram in the next couple weeks.
This time 2 months went by. We still e-mailed, but not as frequently. They were short.. Hey how are you doing baldy, type e-mails. We said stuff like, hey we have to get together again, and I think we both meant it at the time, but time was marching on for both of us. We finally set a date, we were back to Panera.
I got there early, I didn’t know why I was nervous. I sat at the window in the corner and watched her park. I quickly put my coat back on, to hide how much weight I’d lost and that my clothes hung off me. She looked wonderful. Her hair was dyed bright red/blonde and it was short, but growing well. She wore a blouse cut low to show off her figure and that the breast cancer had not won. Everything about her said…. I WIN! I suddenly wanted to sneak out the back door and call her cell and tell her that something had come up, that I couldn’t come, I’m sorry, maybe next week. But I had committed to this humiliation. I had to see it through.
Her mammogram had come back clean. She was now technically cancer free. She and her boyfriend had moved in together with their crazy lab and she was talking future. It was not a shock to me that she did not ask about the bone cancer. So I talked about shopping, which I hate, and the movies I’d love to see that I actually never really planned on seeing. I laughed and did the whole, girls night out gig. Inside I was dizzy.
Was I not happy for Connie? I think I was. I wanted to be. I did not want to see her grow weak and sick and see that grey/yellow pallor that … well, that I had. What was wrong with me? Am I so incredibly shallow, such a poor friend, that I could only see her success as a threat to my failure? Am I really that flawed and selfish? Would I have rather had her be sick just so she could be sick with me? Is that really what went through my mind? I tend to quickly tell myself … NO, I would never do something that horrid. But I am left wondering if that’s quite right. Does misery love company? Would I have been more gracious if the tables had been turned? Would I have made sure to ask her how she was doing? Instead of quietly avoiding the obvious answer.
We hugged a quick, pals hug on the way out of Panera. She said … I’ll be in touch! An obvious lie. I said, Absolutely! Another lie. Did we both know then that we were moving on two different tracks away from each other? What did I expect? If I were free today, from the tubes and the cold floors and the clinical cleanliness and the masks and the beeping and the gloves and needles…. Would I swallow my fear of this place, to go back in and invest my life in my new little friends who are still… on the inside….like prison. I sit at my window and watch visitors come and go. There is a difference when they come in… they’re on a mission, they plod forward, bent on the purpose of going into the institution… getting the name badge, going through the big swinging doors and hearing all those sounds that tell them that this place is not where people are suppose to be. This is where they keep the inmates. When I see them leave, their steps are lighter, almost always they move faster, they hold their heads up, maybe to feel the wind, smell the fresh air. They are free. I remember seeing him ride in on a flame red softail and park it on the sidewalk. I laughed outloud and clapped at him though he had no idea I was up there. He walked in the same way they all did, head down. I watched his bike for him while he was in the hospital visiting some nameless faceless person. I saw him coming out and suddenly something inside me made me grind my teeth. “Come BACK!!!” I feel like screaming….. Begging, take me with you. Please….. As he jumped the curb and got to his bike, I stood up and put my hands on the window…. please….and stood beside his bike and threw his leg over …. Wait…...please don't go… and I imagined the roar, and then he was gone. I shut my eyes and imagined being on that bike, feeling that vibration rumble through my body, the acceleration and the wind coursing over my body.
Everyone moves on. Connie, visitors, me….. Everyone moves on. I just can’t see where I’m going anymore.
Saturday, August 8, 2009
finding out
Why did I choose that one day to go to work, instead of downloading the posts like I did every other day? I’ve wondered before, when that one person leaves the house in the morning, like they do every day, like they have every day for the past 3000 odd days, is there something different that day that they feel before their car goes out of control for that split second on the road, before they feel that tightening in their chest before it seizes and stops beating, before some random act of senseless violence touches and takes their life? Or is it just another ordinary day in their life until it becomes the last moment in their life.
I sprained my ankle pretty badly, thinking originally I might have broken it. X-rays showed the possibility of a slight fracture, but nothing very serious. they gave me an air splint and told me to stay off it for a week, which I largely didn't do. It wrecked my day and a couple after that, but it was just a couple days of pain, didn’t even keep me off work really. A few days later I got a call from the radiology doctor who reviews all the x-rays and said that he was concerned about some fomentation in the bone. they asked me to come back in for a bone scan and some blood work.
I guess I never thought much of it. I never saw the train heading my direction. Never put two and two together. Hindsight what bliss. I had been training for a 10K race in the spring, I chalked it all up to too much excersize and too much competitive desire to beat Matt who would be running with me. I assumed the blood work was just standard procedure with this sort of check up type thing.
How did a simple x-ray for a sprain turn into a bone scan, turn into blood work, turn into an MRI, turn into a biopsy? I’m not sure how it is my life started to unravel so quickly after that. Seems SO long ago now. I had no idea what blood cancer was, and I didn’t want to know. I spent a lot of time looking up Leukemia on the internet. then i spent time trying to avoid anything with that word in it.
chemotherapy was something other people had when they were sick. They got to middle age, had children, a job, a crisis or two, an addiction and a hobby. Then when they were safely well into their 50’s or maybe into their 60’s they developed cancer. Kind of a mysterious all encompassing word that to me, up until this time simply meant… sick. People my age have car accidents, a pregnancy, trouble kicking cigarettes, they pass out drunk and attend anger management classes, not cancer. ... why did I need chemo? i just needed to rest some right? Just needed to take more iron or eat better. I didn’t have a bump or lump, no pain, no tumor.
In the parking lot after I got my little paper telling me where to go and when to show up for my first chemo treatment, Matt stood by his car with his arms crossed. he had planned on something different. Now his future was ruined because of the boat anchor swimming through my bloodstream. He said, "I can't do this. I saw my life moving in a different direction and it's not toward months of hospital stays and puking and hair loss." I don’t remember seeing him drive off. My head was spinning. He needed time to deal with the shock. He would adjust and be with me right? Was I delusional? Should I have seen this coming too? How many times since that day have I told myself that, “It’s better to know now.” Who was I trying to convince? He made his decision, he didn’t need a lecture, begging, or berating. So…. Was I trying to convince myself that being left “now” would be easier than being left “later?”
I thought, chemo cant be that bad right? It's just an IV, I wont really feel anything, I might get a little sick, but it will be ok, I'll manage. I’ll make it, I’ll beat this. I was strong, athletic and had what I proudly considered to be some measure of mental toughness. I learned a lot about what tough was in those first few months. And the more I learned, the more I recognized my lack of it, in fact, lost the desire to even be tough. I wanted to be weak and cowardly. I wanted to run away, hide, deny it all.
Somewhere in the middle of having a hose attached to my chest I guess I came to terms in some small way with this as where I needed to be. this was how it was going to be at least for a little while. Somehow I would just face each moment as it came. Pretty words. I always thought that “mirage” was something that weak people fell for. But in those first weeks that dragged into months, I understood mirage. How real it looks, just out of reach, this would cure it all, these were magic drugs and all I had to do was walk just a little farther and I would be there. It would be over and I would magically “arrive” at that mirage in front of me. I began to wonder at what point the mirage disappears. Is it all at once? You look away and then look back and suddenly it’s gone? Or does it fade in front of your eyes? Becoming gradually more transparent. I spent a lot of time blinking, not knowing what reality was.
I met a woman once who was there for chemo. she was loud and angry and she wore a t-shirt that said in big red letters..... FUCK CANCER. I was at once repulsed by the profanity and yet drawn to the concept. She was beating the odds, the chemo was working, she hoped to be cancer free at her next checkup. Did I have to get hostile and offensive to be able to win this battle? Or could I just sneak through and be on my way?
Could I run away and hide, like I had for all my life? Changing my phone number, changing my p.o. box, moving, selling my car so I wouldn't have registerable trackable plates, changing my hair, suspicious of every person I met who seemed overly interested in me. What did they know? more importantly WHO did they know? somehow I figured the cancer would still track me. Just like he did. So far away, and yet always there hiding, waiting for me to look away, miss a step. When I got the package in the mail, with a little plain card inside. I knew then, I would never be free of him until one of us was dead. And clearly he was making a bid for that to be me. I started running again. I figure cancer will track me no matter how far I run..... just like he will.
for weeks that leaked into months I quietly carefully obeyed, went to all my appointments, ate right, exercised more carefully, tried to rest, tried to let it roll over me. i was tired, like hit by a truck tired. but it was controllable. I had always thought that working as a junior editor was just a money job, I had no aspirations to high end editorial staff, so working from home was a blessing in a way. I could blissfully fall asleep at my computer and no one was the wiser. I was losing my hair but that was hidable... to some extent, though when I started to lose the hair on my eyebrows, even the soft fuzzy hair on my arms, I dreaded going out in public, like being naked, you see the stares of people who are actively trying not to stare. I heard mothers shush their children. I saw it all, pity, disgust, embarrassment.... it all registered. No more hiding here...
I would go to the store at 1 am just to avoid people moving subtley away from me in line, hearing the conversation slowly go from normal to whispers to silence. I hated using public transportation, sitting next to parents who try carefully, discreetly to shield their children from the plague. So after having sold my car to hide from my father, I purchased a car to hide from the world.
But there were up days too. Days when eating was fine and the weather was nice and i felt no one was following me and i would take the telescope out to the country late at night and look up at the stars and wonder who was up there. I have go-to software on my telescope and for the longest time it never worked correctly no matter how I collimated my telescope. suddenly my go-to software worked, and i saw things i'd never seen before. i saw venus, just before sunrise and jupiter when the season changed. if our planet slid a mere few miles closer to our star, our balance of nitrogen and oxygen would completely change, vaporizing most of our water mass and distilling it into the air which would perpetually throw our planet into a more oblong and catastrophic orbit. A few miles too far from the sun and we would crystallize most of our water and reduce the growing season to a few weeks, rendering most of the planet capable of growing nothing more than moss or tundra plants, thereby killing off livestock who need the plant life to live off of. It put into perspective my position on this round rock. How truly finite I am. In the grand scheme of things, only a small puff of vapor. And somewhere inside me something ached a little at the increasing knowledge that I was alone, and terrified.
Chemo the second time around. It wasn’t working. I felt badly for the young oncologist who had to come in and tell me all this. He spent a lot of time looking at the floor, so I thought maybe I should look there too. So the next option was radiation. Specifically intrathecal radiation. a port into my neck through to my spine. The procedure was intimidating, your head needs to be absolutely perfectly still, but you need to be awake so that they can make sure that they are not conflicting nerves. They put you in what they affectionately I suppose, refer to as.. the mask. a tight white mesh vinyl net stretched over my entire head and screwed into a plexiglass frame . They used an ultra sound to locate the small space they needed and then rolling the whole bed over so that I was looking at the floor I heard the drill whining. I wanted to scream but I couldn’t open my mouth. I felt what I had thought was water hitting the back of my head, only to later when they took the mesh mask off, see spatters of blood and flecks of bone in it. I sat wide eyed, stunned, in shock I suppose. I remember sitting in the bed looking at the wall and starting to shake. I felt the temperature in the room was 10 degrees. I wanted to throw up, I wanted to curl up. I was terrified to turn my head to look at the nurse when she walked in. I was shaking so badly they couldn’t flush the port. The nurse smiled and said, “It’s ok, this is normal.” Normal? Nothing about this is normal. Just sit by my bed for a minute ok? Just sit and hold my hand for just a minute. Tell me jokes, tell me it will be ok, lie to me, talk about your life, your family, how you took the trash out this morning and stopped at starbucks on the way in. Just hold my hand, dont leave me here right now. But I swallowed all those words and picked a spot on the wall. I must have stared at that spot for hours, focusing on every thing about it, anything about it. Anything but the hole in my neck. It was days before I could screw up my nerve to reach back and feel the plastic port. I remember touching it like it would bite me, wondering if it would hurt inside my neck, wondering, what if I rolled over and it moved out of place, what if I was paralyzed. So many what ifs, so few answers to them.
I started to go through longer periods as an inpatient…. Or.. Inmate. I began to lose myself in a swamp of pity. On some level I guess I saw it coming and decided to be proactive if that was possible. Going down to pediatrics was a mixed bag. Seeing them suffer and smile was confusing, wonderful, horrible. I hated it and loved it. I wanted to be there and hated going. There is something awkward about creating a friendship you know will never last. Even those who got better, they would not be coming back for sweet emotional visits. They were kids, they had lives to lead, when they escaped they flew, just like it should be.
They included me in their secret club. Me the older kid, I felt honored and insulted at the same time. I didn’t want to be a part of this club. I didn’t want to pay dues.
There were no age restrictions. I learned the special code, the special language we shared. I learned what we did and didn’t talk about in our club. We didn’t talk about the weather, or politics, or the stock market. In our club the rack by the door holds our outside armor. We don't wear our bandanas or our baseball caps in the clubhouse. We only do that outside, for you. So you don’t have to look away in embarrassment, or stand there confused, not knowing if you should politely pretend to not notice, or try to hold our gaze.
We don't say, “how are you feeling today?” We know you ask out of kindness, but we also know what all the acceptable answers are. “Hanging in there!” “Well there are good days and bad.” “Fighting the fight!” “Doing ok” All of them lies to comfort you.
They taught me their secret code. No one walks out alone. That’s all. No one walks out alone. I remember when I learned that code. It is forever etched across my heart. Seared into my memory. It is our mantra, never far from our lips. Whispered at night when we are alone and afraid. I went into peds like I did most days. I knew the second the door swung open that something was different. Like a low hum you can’t quite identify but walk from room to room to find. It didn’t take long. It was Rodney, who put his hand in mine and said, “come on we have to go, Ben’s walking out.” I met Ben only a few days ago. And I knew he wasn’t walking. It didn’t take me long to get the lingo and it didn’t take Ben long to walk out. We stood like a well practiced chorus quietly outside his room. Waiting for his family to stumble out, numb, dumb. His mom walked out like all was well saying, “NO” over and over. Angrily yanking her arm away from her husband who was trying desperately to cling to her, for either her own comfort or… maybe for his. We filed in slowly. Let the ritual begin. First the pronouncement. “He’s dead” Paul said. We didn’t feel the need to soften it up, call it “passing away” or “sleeping.” He was dead. But something in us needed to say it. To hear those flat stark words echo across the room. We look up at the heart monitor. We all have one, we know how to read them now. We hear the subtle changes in the tones, we can tell who’s struggling, who is on the edge. The line still leads to the patches on his chest. We stare at the thin green line, it seems to fascinate us all. The pain pump isn’t clicking anymore and someone took out the line that led into his thin vein-lined arm. The florescent light makes him look transparent and hollow. His lips turning light blue, his body cooling rapidly. The natural muscle tone gone, making him appear somehow flat. We close in around him. We aren’t afraid to touch him. We rub his head and stroked his hands. No one walks out alone.
At that moment I looked down at Rodney, 8 years old, looking at Ben, 6 years old. Rodney was growing up. This little boy is seeing things his little 8 year old eyes were never meant to see. He is holding the hand of a dead child who should never be dead. And a horrible hideous evil thought entered my mind….. Everyone should watch a child die. It would change every priority in your life. All the business and bills, all the petty fights, the mindless acquisitions, the concern over global warming and the world economy. Would all fade away in that one stark defining moment. Rodney is better now, he’s gone, I’ve never seen him again. And part of me hopes I never will. But Rodney’s life will be forever changed because of those moments that he took to hold the hand of a dead child. And I think it likely that those around Rodney will likely be changed too. And what about Ben? What do you do that makes a lasting memory? He couldn’t feel us holding his hand, rubbing his head, bending over to brush my lips across his eyelids. We do it for us, not for him. To say… I’m still human, I still care, and I promise to never forget.
It wouldn’t be the last time we performed our sacred secret ritual. It travelled like magic, like birds gathering to escape the coming cold. We collected outside the room, or hung at the edge of the hall, waiting. Sometimes their family members would see us and sensing our unique and terrible bond, would invite us in. Then we would file in and stand in the corner, watching, holding our breath. We rarely watched the one walking out. We watched the family. We watched them like hawks. Our twisted desire to experience our own walk out, vicariously. Would someone hold my hand? Would anyone even know? No one walks out alone. I mumble it a lot it seems. Who am I trying to convince? Someone else? Or myself.
There is one room we don’t talk about. The room with the yellow line. The bed is across the room and the yellow line marks the safety zone that visitors must not cross. They come in and stare across that void, eyes wide, wondering what to expect. The glowing radiation button pulses on the wall telling them when the exhibit closes. And they smile that smile that never touches their eyes and say, “Hang in there.” and turn to leave, trying to walk casually, but we sense that thinly veiled desire to bolt out the door and down the hall.
No lack of humor in our club. A special kind of maudlin dark humor. We shared the secret symptoms with the clinical names. People who had chemo ... got nausea.... but it doesn't really adequately describe the open sea waves that crash over you. the feeling of suddenly breaking out in a sweat and being too tired to be able to race to the bathroom, too weak to stand up and bend over to throw up, sitting for hours on the bathroom floor because i knew i would just end up back here shortly anyway. feeling that horrible slow grinding pop when i wretched so hard my ribs separated from my sternum and cracked. Feeling the pressure fill my head and as my platelet count dropped each time I threw up my nose started to bleed for half an hour. Falling asleep curled beneath the sink with my head on a towel too tired to care that my face was covered with blood. Prize fighters wore their bloodied faces as proud badges of their conquest. I was too beaten to even retreat. Too humiliated to care. Too alone, too tired to even cry for someone else’s benefit or attention.
The irony of the cure. Methotrexate, tamoxifen, Glevac, ifosfamide and doxorubicin. The chemical names sound so much more fancy than just calling it what it is. They are carefully controlled, monitored, studied. They come with an actual book of efficacy trials and side effect studies. But we knew what they really are. Deadly toxins. Not one of them safe to handle by….. Normal people. They could as easily kill as cure. And often did. Why am I doing this? Remind me again? Why do I have to make these decisions? Like listening to a mathematician talk about analytical trigonometry, I had no idea half of what they were telling me. How many times would I be asked, “Do you want to talk to your family about some of these decisions?” …. “Where are your mom and dad honey?” ….. “Why don’t you talk about this with your family and we’ll talk more tomorrow.” ….. After a while I started simply saying ok, sure, I’ll do that and get back to you. And … after a while, I could tell it got charted. Somewhere in that electronic file are the words….. Don’t ask about her family, they either aren’t here or aren’t coming. Worded clinically of course, in the best possible politically correct wording. They stopped asking, and I stopped answering. The oncology advocate still occasionally says… is there anyone I can add to contact, just so they know what you’re going through? Just so you can have someone in your corner? Who would that be? Patrice, who is getting married soon and planning a future full of life? Matt, who felt the need to bring his new girlfriend to the hospital, to tell me she was pregnant, that they were getting married and… “just wanted you to know that I feel I can move on now Gabs, I hope you can too.” I felt so badly for her. Standing there awkwardly shifting from one foot to another. Looking at the floor, glancing at him, trying desperately to look at anything but me.
Am I weak to want out? Is it a sign of giving up that I want someone to make these decisions for me? Is it pathetic to want to have a hand to hold? To want to be held? How much do I put my nurses through, late at night, when I wake up screaming from a nightmare? How much blood have I wasted that could have gone to others? Bag after bag, dripping away. I watched the original Dickens “Christmas Carol” a few months ago and the scene where scrooge is faced with the orphans and the people on the street and describes them as the surplus of the earth, a drain on the system. Have I become that? Just a consumer.. Of drugs, blood, oxygen, time.
No one walks out alone. I seem to be begging it. It seems more a question than a statement to me.
I am not really sure why i wrote this. The likelihood of it being read by anyone but me is pretty remote. I am not sure what it is within humans that makes us need to examine our lives. but... like most examinations i've undergone recently.... i find that i have flunked out. no amount of cramming seems to be working for me now. I was hoping for an essay test. Something I could cleverly bullshit my way through. Use lots of circular logic and big impressive words. Discuss my case in a clinical and detached manner. But my body isn’t listening. Am I still in this fight? I see the downward trend. Even as I tell myself that I’m still fighting, I’m still getting up. The doubt creeps in and the energy to push it away, to consciously choose to not be buried by the influx of tests, procedures, drugs, results….. Is the energy expenditure worth the eventual outcome? If I win then I guess so.
When will I be free? Truly free. Is anyone? Or is that a mirage we are all chasing?
I sprained my ankle pretty badly, thinking originally I might have broken it. X-rays showed the possibility of a slight fracture, but nothing very serious. they gave me an air splint and told me to stay off it for a week, which I largely didn't do. It wrecked my day and a couple after that, but it was just a couple days of pain, didn’t even keep me off work really. A few days later I got a call from the radiology doctor who reviews all the x-rays and said that he was concerned about some fomentation in the bone. they asked me to come back in for a bone scan and some blood work.
I guess I never thought much of it. I never saw the train heading my direction. Never put two and two together. Hindsight what bliss. I had been training for a 10K race in the spring, I chalked it all up to too much excersize and too much competitive desire to beat Matt who would be running with me. I assumed the blood work was just standard procedure with this sort of check up type thing.
How did a simple x-ray for a sprain turn into a bone scan, turn into blood work, turn into an MRI, turn into a biopsy? I’m not sure how it is my life started to unravel so quickly after that. Seems SO long ago now. I had no idea what blood cancer was, and I didn’t want to know. I spent a lot of time looking up Leukemia on the internet. then i spent time trying to avoid anything with that word in it.
chemotherapy was something other people had when they were sick. They got to middle age, had children, a job, a crisis or two, an addiction and a hobby. Then when they were safely well into their 50’s or maybe into their 60’s they developed cancer. Kind of a mysterious all encompassing word that to me, up until this time simply meant… sick. People my age have car accidents, a pregnancy, trouble kicking cigarettes, they pass out drunk and attend anger management classes, not cancer. ... why did I need chemo? i just needed to rest some right? Just needed to take more iron or eat better. I didn’t have a bump or lump, no pain, no tumor.
In the parking lot after I got my little paper telling me where to go and when to show up for my first chemo treatment, Matt stood by his car with his arms crossed. he had planned on something different. Now his future was ruined because of the boat anchor swimming through my bloodstream. He said, "I can't do this. I saw my life moving in a different direction and it's not toward months of hospital stays and puking and hair loss." I don’t remember seeing him drive off. My head was spinning. He needed time to deal with the shock. He would adjust and be with me right? Was I delusional? Should I have seen this coming too? How many times since that day have I told myself that, “It’s better to know now.” Who was I trying to convince? He made his decision, he didn’t need a lecture, begging, or berating. So…. Was I trying to convince myself that being left “now” would be easier than being left “later?”
I thought, chemo cant be that bad right? It's just an IV, I wont really feel anything, I might get a little sick, but it will be ok, I'll manage. I’ll make it, I’ll beat this. I was strong, athletic and had what I proudly considered to be some measure of mental toughness. I learned a lot about what tough was in those first few months. And the more I learned, the more I recognized my lack of it, in fact, lost the desire to even be tough. I wanted to be weak and cowardly. I wanted to run away, hide, deny it all.
Somewhere in the middle of having a hose attached to my chest I guess I came to terms in some small way with this as where I needed to be. this was how it was going to be at least for a little while. Somehow I would just face each moment as it came. Pretty words. I always thought that “mirage” was something that weak people fell for. But in those first weeks that dragged into months, I understood mirage. How real it looks, just out of reach, this would cure it all, these were magic drugs and all I had to do was walk just a little farther and I would be there. It would be over and I would magically “arrive” at that mirage in front of me. I began to wonder at what point the mirage disappears. Is it all at once? You look away and then look back and suddenly it’s gone? Or does it fade in front of your eyes? Becoming gradually more transparent. I spent a lot of time blinking, not knowing what reality was.
I met a woman once who was there for chemo. she was loud and angry and she wore a t-shirt that said in big red letters..... FUCK CANCER. I was at once repulsed by the profanity and yet drawn to the concept. She was beating the odds, the chemo was working, she hoped to be cancer free at her next checkup. Did I have to get hostile and offensive to be able to win this battle? Or could I just sneak through and be on my way?
Could I run away and hide, like I had for all my life? Changing my phone number, changing my p.o. box, moving, selling my car so I wouldn't have registerable trackable plates, changing my hair, suspicious of every person I met who seemed overly interested in me. What did they know? more importantly WHO did they know? somehow I figured the cancer would still track me. Just like he did. So far away, and yet always there hiding, waiting for me to look away, miss a step. When I got the package in the mail, with a little plain card inside. I knew then, I would never be free of him until one of us was dead. And clearly he was making a bid for that to be me. I started running again. I figure cancer will track me no matter how far I run..... just like he will.
for weeks that leaked into months I quietly carefully obeyed, went to all my appointments, ate right, exercised more carefully, tried to rest, tried to let it roll over me. i was tired, like hit by a truck tired. but it was controllable. I had always thought that working as a junior editor was just a money job, I had no aspirations to high end editorial staff, so working from home was a blessing in a way. I could blissfully fall asleep at my computer and no one was the wiser. I was losing my hair but that was hidable... to some extent, though when I started to lose the hair on my eyebrows, even the soft fuzzy hair on my arms, I dreaded going out in public, like being naked, you see the stares of people who are actively trying not to stare. I heard mothers shush their children. I saw it all, pity, disgust, embarrassment.... it all registered. No more hiding here...
I would go to the store at 1 am just to avoid people moving subtley away from me in line, hearing the conversation slowly go from normal to whispers to silence. I hated using public transportation, sitting next to parents who try carefully, discreetly to shield their children from the plague. So after having sold my car to hide from my father, I purchased a car to hide from the world.
But there were up days too. Days when eating was fine and the weather was nice and i felt no one was following me and i would take the telescope out to the country late at night and look up at the stars and wonder who was up there. I have go-to software on my telescope and for the longest time it never worked correctly no matter how I collimated my telescope. suddenly my go-to software worked, and i saw things i'd never seen before. i saw venus, just before sunrise and jupiter when the season changed. if our planet slid a mere few miles closer to our star, our balance of nitrogen and oxygen would completely change, vaporizing most of our water mass and distilling it into the air which would perpetually throw our planet into a more oblong and catastrophic orbit. A few miles too far from the sun and we would crystallize most of our water and reduce the growing season to a few weeks, rendering most of the planet capable of growing nothing more than moss or tundra plants, thereby killing off livestock who need the plant life to live off of. It put into perspective my position on this round rock. How truly finite I am. In the grand scheme of things, only a small puff of vapor. And somewhere inside me something ached a little at the increasing knowledge that I was alone, and terrified.
Chemo the second time around. It wasn’t working. I felt badly for the young oncologist who had to come in and tell me all this. He spent a lot of time looking at the floor, so I thought maybe I should look there too. So the next option was radiation. Specifically intrathecal radiation. a port into my neck through to my spine. The procedure was intimidating, your head needs to be absolutely perfectly still, but you need to be awake so that they can make sure that they are not conflicting nerves. They put you in what they affectionately I suppose, refer to as.. the mask. a tight white mesh vinyl net stretched over my entire head and screwed into a plexiglass frame . They used an ultra sound to locate the small space they needed and then rolling the whole bed over so that I was looking at the floor I heard the drill whining. I wanted to scream but I couldn’t open my mouth. I felt what I had thought was water hitting the back of my head, only to later when they took the mesh mask off, see spatters of blood and flecks of bone in it. I sat wide eyed, stunned, in shock I suppose. I remember sitting in the bed looking at the wall and starting to shake. I felt the temperature in the room was 10 degrees. I wanted to throw up, I wanted to curl up. I was terrified to turn my head to look at the nurse when she walked in. I was shaking so badly they couldn’t flush the port. The nurse smiled and said, “It’s ok, this is normal.” Normal? Nothing about this is normal. Just sit by my bed for a minute ok? Just sit and hold my hand for just a minute. Tell me jokes, tell me it will be ok, lie to me, talk about your life, your family, how you took the trash out this morning and stopped at starbucks on the way in. Just hold my hand, dont leave me here right now. But I swallowed all those words and picked a spot on the wall. I must have stared at that spot for hours, focusing on every thing about it, anything about it. Anything but the hole in my neck. It was days before I could screw up my nerve to reach back and feel the plastic port. I remember touching it like it would bite me, wondering if it would hurt inside my neck, wondering, what if I rolled over and it moved out of place, what if I was paralyzed. So many what ifs, so few answers to them.
I started to go through longer periods as an inpatient…. Or.. Inmate. I began to lose myself in a swamp of pity. On some level I guess I saw it coming and decided to be proactive if that was possible. Going down to pediatrics was a mixed bag. Seeing them suffer and smile was confusing, wonderful, horrible. I hated it and loved it. I wanted to be there and hated going. There is something awkward about creating a friendship you know will never last. Even those who got better, they would not be coming back for sweet emotional visits. They were kids, they had lives to lead, when they escaped they flew, just like it should be.
They included me in their secret club. Me the older kid, I felt honored and insulted at the same time. I didn’t want to be a part of this club. I didn’t want to pay dues.
There were no age restrictions. I learned the special code, the special language we shared. I learned what we did and didn’t talk about in our club. We didn’t talk about the weather, or politics, or the stock market. In our club the rack by the door holds our outside armor. We don't wear our bandanas or our baseball caps in the clubhouse. We only do that outside, for you. So you don’t have to look away in embarrassment, or stand there confused, not knowing if you should politely pretend to not notice, or try to hold our gaze.
We don't say, “how are you feeling today?” We know you ask out of kindness, but we also know what all the acceptable answers are. “Hanging in there!” “Well there are good days and bad.” “Fighting the fight!” “Doing ok” All of them lies to comfort you.
They taught me their secret code. No one walks out alone. That’s all. No one walks out alone. I remember when I learned that code. It is forever etched across my heart. Seared into my memory. It is our mantra, never far from our lips. Whispered at night when we are alone and afraid. I went into peds like I did most days. I knew the second the door swung open that something was different. Like a low hum you can’t quite identify but walk from room to room to find. It didn’t take long. It was Rodney, who put his hand in mine and said, “come on we have to go, Ben’s walking out.” I met Ben only a few days ago. And I knew he wasn’t walking. It didn’t take me long to get the lingo and it didn’t take Ben long to walk out. We stood like a well practiced chorus quietly outside his room. Waiting for his family to stumble out, numb, dumb. His mom walked out like all was well saying, “NO” over and over. Angrily yanking her arm away from her husband who was trying desperately to cling to her, for either her own comfort or… maybe for his. We filed in slowly. Let the ritual begin. First the pronouncement. “He’s dead” Paul said. We didn’t feel the need to soften it up, call it “passing away” or “sleeping.” He was dead. But something in us needed to say it. To hear those flat stark words echo across the room. We look up at the heart monitor. We all have one, we know how to read them now. We hear the subtle changes in the tones, we can tell who’s struggling, who is on the edge. The line still leads to the patches on his chest. We stare at the thin green line, it seems to fascinate us all. The pain pump isn’t clicking anymore and someone took out the line that led into his thin vein-lined arm. The florescent light makes him look transparent and hollow. His lips turning light blue, his body cooling rapidly. The natural muscle tone gone, making him appear somehow flat. We close in around him. We aren’t afraid to touch him. We rub his head and stroked his hands. No one walks out alone.
At that moment I looked down at Rodney, 8 years old, looking at Ben, 6 years old. Rodney was growing up. This little boy is seeing things his little 8 year old eyes were never meant to see. He is holding the hand of a dead child who should never be dead. And a horrible hideous evil thought entered my mind….. Everyone should watch a child die. It would change every priority in your life. All the business and bills, all the petty fights, the mindless acquisitions, the concern over global warming and the world economy. Would all fade away in that one stark defining moment. Rodney is better now, he’s gone, I’ve never seen him again. And part of me hopes I never will. But Rodney’s life will be forever changed because of those moments that he took to hold the hand of a dead child. And I think it likely that those around Rodney will likely be changed too. And what about Ben? What do you do that makes a lasting memory? He couldn’t feel us holding his hand, rubbing his head, bending over to brush my lips across his eyelids. We do it for us, not for him. To say… I’m still human, I still care, and I promise to never forget.
It wouldn’t be the last time we performed our sacred secret ritual. It travelled like magic, like birds gathering to escape the coming cold. We collected outside the room, or hung at the edge of the hall, waiting. Sometimes their family members would see us and sensing our unique and terrible bond, would invite us in. Then we would file in and stand in the corner, watching, holding our breath. We rarely watched the one walking out. We watched the family. We watched them like hawks. Our twisted desire to experience our own walk out, vicariously. Would someone hold my hand? Would anyone even know? No one walks out alone. I mumble it a lot it seems. Who am I trying to convince? Someone else? Or myself.
There is one room we don’t talk about. The room with the yellow line. The bed is across the room and the yellow line marks the safety zone that visitors must not cross. They come in and stare across that void, eyes wide, wondering what to expect. The glowing radiation button pulses on the wall telling them when the exhibit closes. And they smile that smile that never touches their eyes and say, “Hang in there.” and turn to leave, trying to walk casually, but we sense that thinly veiled desire to bolt out the door and down the hall.
No lack of humor in our club. A special kind of maudlin dark humor. We shared the secret symptoms with the clinical names. People who had chemo ... got nausea.... but it doesn't really adequately describe the open sea waves that crash over you. the feeling of suddenly breaking out in a sweat and being too tired to be able to race to the bathroom, too weak to stand up and bend over to throw up, sitting for hours on the bathroom floor because i knew i would just end up back here shortly anyway. feeling that horrible slow grinding pop when i wretched so hard my ribs separated from my sternum and cracked. Feeling the pressure fill my head and as my platelet count dropped each time I threw up my nose started to bleed for half an hour. Falling asleep curled beneath the sink with my head on a towel too tired to care that my face was covered with blood. Prize fighters wore their bloodied faces as proud badges of their conquest. I was too beaten to even retreat. Too humiliated to care. Too alone, too tired to even cry for someone else’s benefit or attention.
The irony of the cure. Methotrexate, tamoxifen, Glevac, ifosfamide and doxorubicin. The chemical names sound so much more fancy than just calling it what it is. They are carefully controlled, monitored, studied. They come with an actual book of efficacy trials and side effect studies. But we knew what they really are. Deadly toxins. Not one of them safe to handle by….. Normal people. They could as easily kill as cure. And often did. Why am I doing this? Remind me again? Why do I have to make these decisions? Like listening to a mathematician talk about analytical trigonometry, I had no idea half of what they were telling me. How many times would I be asked, “Do you want to talk to your family about some of these decisions?” …. “Where are your mom and dad honey?” ….. “Why don’t you talk about this with your family and we’ll talk more tomorrow.” ….. After a while I started simply saying ok, sure, I’ll do that and get back to you. And … after a while, I could tell it got charted. Somewhere in that electronic file are the words….. Don’t ask about her family, they either aren’t here or aren’t coming. Worded clinically of course, in the best possible politically correct wording. They stopped asking, and I stopped answering. The oncology advocate still occasionally says… is there anyone I can add to contact, just so they know what you’re going through? Just so you can have someone in your corner? Who would that be? Patrice, who is getting married soon and planning a future full of life? Matt, who felt the need to bring his new girlfriend to the hospital, to tell me she was pregnant, that they were getting married and… “just wanted you to know that I feel I can move on now Gabs, I hope you can too.” I felt so badly for her. Standing there awkwardly shifting from one foot to another. Looking at the floor, glancing at him, trying desperately to look at anything but me.
Am I weak to want out? Is it a sign of giving up that I want someone to make these decisions for me? Is it pathetic to want to have a hand to hold? To want to be held? How much do I put my nurses through, late at night, when I wake up screaming from a nightmare? How much blood have I wasted that could have gone to others? Bag after bag, dripping away. I watched the original Dickens “Christmas Carol” a few months ago and the scene where scrooge is faced with the orphans and the people on the street and describes them as the surplus of the earth, a drain on the system. Have I become that? Just a consumer.. Of drugs, blood, oxygen, time.
No one walks out alone. I seem to be begging it. It seems more a question than a statement to me.
I am not really sure why i wrote this. The likelihood of it being read by anyone but me is pretty remote. I am not sure what it is within humans that makes us need to examine our lives. but... like most examinations i've undergone recently.... i find that i have flunked out. no amount of cramming seems to be working for me now. I was hoping for an essay test. Something I could cleverly bullshit my way through. Use lots of circular logic and big impressive words. Discuss my case in a clinical and detached manner. But my body isn’t listening. Am I still in this fight? I see the downward trend. Even as I tell myself that I’m still fighting, I’m still getting up. The doubt creeps in and the energy to push it away, to consciously choose to not be buried by the influx of tests, procedures, drugs, results….. Is the energy expenditure worth the eventual outcome? If I win then I guess so.
When will I be free? Truly free. Is anyone? Or is that a mirage we are all chasing?
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