"the hardest thing in this world is to live in it"
living with cancer
Om mani padme hum I bow to the jewel in the lotus
Om ami dewa hrih Diety of endless light
Om vajra sattva hum May you open the gates of samsara
A a ha sha sa ma And purify my mother’s life
Goodbye, Mommy.
The rapid flight of feet on stairs
should have pulled me out of sleep
But I’m already awake,
Woken by a touch across my forehead,
fingers tracing through my hair
mimicing my movements yesterday
The pressing against my forehead of lips
I wake to brush my sister away
To hear the rapid flight of her feet up the stairs
And my heart broken open,
aching with the words I know she’s going to say
“She’s gone.”
I wish I could take a picture of what I see before me. It’s an oddly beautiful image, and one I would love to keep external to my mind, but I’m pretty sure my sister would kill me if I even tried. She is sitting in front of the end table holding medicine and supplies, reading a pamphlet the chaplain left for us. The lamp on the table is on, catching on the edges of her glasses and eyes as she looks from pamphlet to Mom and back again.
Mom is lying in bed, arms extended in front of her, hands resting on either side of a knee. Her nightgown is far too long, and her sternum is visible, St. Peregrine pendant resting slightly to the left, the way she leans. Multiple pillows and towels have been used to prop her upright. Her eyes are closed, mouth open. The expression on her face is mostly peaceful, sometimes marred with what looks like pain. Her shallow breathing shakes her entire body, clavacl almost heaving forward with every breath. Curled at her feet is the chocolatey cinnamon mottled calico, Molly.
It is an oddly beautiful, strangely peaceful scene – one I wish could be recreated elsewhere, instead of my inadequate words and personal memory.
When Dad came up with his ativan offering, we talked for a little bit. He’d obviously talked to Tracy, or just overheard us, and explained some of his choices, admitted some of the mistakes. Told me he’s going to fall apart after the funeral – I expect Tracy to crash some time between death and funeral, but if not, she’ll be apart after, as well.
I don’t know. I’m still angry. Tracy and I talked in the kitchen for a bit, alternating between the distance that used to exist between us, and close giggling over ghosts. She told me things I didn’t know, about it being important for Mom I was in school because of the past and something Mom did/didn’t do – I didn’t quite follow, and the only thing I can think of is that it must relate to the bad relationship I alluded to earlier, the one I wonder why she didn’t work harder to get me out of.
There is so much I’m losing. My history, the greater family history, the conversations she and I just never had. We’ve always had issues between us, there’s always been that thing there we don’t address – several elephants in the room. Maybe more accurate to say we were standing in the savannah, in the middle of a tribe.
I was supposed to come home in time to have at least a few of these conversations. For Mom and I to make as much peace as we could with one another. I was promised, I was promised, it’s the only reason I got back on that damned plane, and justifying it with saying it was important to Mom? Well, what about the needs of the living? Not to put too fine a point on it, but in the end run, what’s the consequence of pissing off Mom? The consequence of not doing it means I’m going to have to actively work to not allow a wedge to be driven between me and the rest of my family over this.
I could easily see myself, earlier, when I was sitting in here alone, typing and listening to Buddhist chants in an effort to calm down, just leaving. I can understand the impulse that made my aunt cut off all contact from the rest of the family after my maternal grandmother died. You just look at the collected list of hurts you’ve accumulated, and decide it’s time to stop accumulating, take what you need, and leave.
I was going to go for second best, and see if Timothy wanted to do something, and maybe if I could crash on his couch for the night. I was trying to figure out how I would get ahold of him when Dad came back upstairs a second time, telling me they were going to watch The Next Iron Chef with Mom, and I should join them.
I did, opting to take the time to eat, as well. But I sat silently and a bit apart, and admit that I resisted their efforts to pull me in to the conversation. Just going downstairs was a huge step for me – I actively contemplated not, just staying up here and reading or doing work or something. Even my “would you regret this later in life” test brought up a genuine shrug, an indication of just how hurt I am.
Maybe that’s what this all comes down to – hurt. Buddhism, after all, doesn’t consider anger a true emotion. It’s a masking emotion, hiding something you don’t want to face. Generally it’s fear, or hurt (and some people argue fear is a subset, and when we’re angry, it’s because we have been or are afraid of being hurt).
I’m afraid of what’s going to happen. I can feel the destructive potential of anger swirling in all of us, of resentments and frustrations and I’m afraid that without Mom holding us together, my family is going to shatter apart – and I’m frightened that my anger is so strong that I will be the cause.
By the by – I figure if I’m going to write this, I’m going to write all of it. I know we probably seem pretty amazing and calm, and yeah, I don’t even need to be pressed to say that I have an amazing family. But we’re under intense strain and pressure, and it would be a lie to only show the pulled together side, and ignore the pain and chaos that happens, too.
I’m angry.
I’m so angry I just blew up at my sister, one of the people I’m angry at. And Dad certainly picked up on the fact that I was angry, too – I suspect the short sentences and clearing everything out of the room he was in, oh, and telling him to go away and leave me alone after he dared suggest, when I was crying, that I wanted Mom to stay around in this sort of pain.
What I want is to be there when she dies. I don’t want to be in the same city. I don’t want to be in the same house. I want to be in the same room, there with her, as she has been there for me so often.
Problem is, she apparently made it clear to everyone she didn’t want me there. She never told me that, of course – when we talked about it, it was different. But isn’t that the way it always goes? So yeah, I’m mad at her, too. I’m furious with her for doing this to me, denying me this.
This entire year has been about me losing control of any say in anything. Dad decides when I come and go, based on Mom’s thoughts when she was aware, and Tracy’s medical knowledge. Mom wanted me to be in school this semester, even though we all knew I’d have to leave half-way through, leaving me with what – another $5000 in debt and two more incompletes? For that cost, I could have bought amazing state health insurance, and not had to worry about school – I could have come home, done my job from here, I could have still done ASBH. And I could have had more time.
I feel like time has been stolen from me. And Mom and I had a lot of time where we weren’t friends, where we didn’t even talk. I left home young, and on bad terms, thanks to accusations Dad brought to my face, but Mom believed. We didn’t talk for several years, except in the occasional hand written letter. They moved to Portland and offered to take me with them, but at that point the wedge, the hurt was so deep, I didn’t even go to say goodbye, or take any of my things from the house before they left.
Eventually talking started again – in one of those sad irony things, I received a letter from Mom saying that Grandma was very sick, and they would pay for me to go visit her, since Grandma and I had been so close. Maybe I could talk sense into Grandma, and if not, I could talk to her, spend time with, be with her. I was reading the letter, teary and grateful, ready to call and accept, when Mom called to tell me Grandma had died that morning.
But it opened up talking, and I started to visit at Thanksgiving. A few days I dreaded, coming up to the trip, because they were all strangers who just shared blood with me. Tim and Tracy were growing up, and growing up without me – I was just an abstract concept, their weird sister they sometimes saw and heard about. I had no value to their life, and I was just an irritant when I was around. And Mom and Dad tried to keep things between us as stress-free as possible, but it was always stressful. I didn’t have a place here, just a cobbled together bedroom of discarded furniture. Being in that dark room, and then seeing the amazing things done to my siblings bedroom, just reinforced the teenage idea that had long been lodged in my brain – I was the first child, the guinea pig child, and they had screwed up badly enough that I wasn’t worth investing in. Not even for a nice comforter and bed sheets.
Meanwhile, my brother’s room is turned into an amazing black, white, mirrored club-land, and my sister gets this arial retreat that I’m sitting in right now. Dark blue base walls, sun and moon border at the wainscot, beautiful blue and white clouds wallpapered above. Custom cabinets, a closet organizer that’s practical and sensible, matching accessories in sparkling silver, blue and white – down to the throw pillows for the bed.
She had celestial themed throw pillows for the bed, and I had the discarded pillows no one else wanted, because they felt funny or old.
It was hard to not harbour a lot of resentment for my family. They functioned better as a unit of four; I was the fifth wheel.
I had to move back home at 20. I was in a bad relationship, and a bad work environment, and finally had met a few people who had convinced me that I deserved better. And part of me always wonders why the hell it had to be these other people, why my parents didn’t try harder, why they made an effort to include him when what they should have done is every effort to get me away from him. So I smartened up, and ended up in Portland at my parents house, a car full of possessions and no idea what I was going to do.
Part of what I did was, slowly, over the next few years, repair my relationship with my parents. At the same time, I developed a relationship with my siblings – a somewhat shallow one, but it was there. I was close by, Nevada and then Seattle, so it was easy to visit a lot. Once Tracy graduated college, she had more time, and we started really getting to know each other – in the last year, she’s become one of my closest friends. My brother is still a bit of a distant being, but when he was arrested, I was the first person he called, in tears.
But it was never as close as it could have been. After my divorce, Mom and I got closer than we’d been in a long time, and I was able to start letting go some of the issues I had with being the fifth wheel. Trying to make peace with my own decisions, and acknowledge that my choices led to what happened as much as anything else; being jealous for my sister’s repeated trips to Europe when I wasn’t even able to go to Washington, DC with one of my classes was only a reflection on the family finances at those times, nothing more. The funny thing is, I type that out, and have to acknowledge I still have the instinctve wince reaction to “trips” to Europe, because she’s been several times for school, and once for fun.
This is not to say my parents did nothing for me. They supported me in the early days of my marriage, sneaking groceries into my car when I wasn’t looking (hell, buying me that car years before, so I could even accept a job at Apple), they helped me in the last days of it, too, and my divorce. They made sure I had money, could pay rent, have taken care of my rent. They bought me my car, they moved me to Albany, set up my apartment, lent me money they didn’t have when I was having problems balancing different tuition and costs with living. They take care of me as they can… I guess, with exception of driving across the country, it’s simply always felt like it’s remote distant help and support. Lacking intimacy.
Oh – yep, Tracy apparently told Dad I blew up. Or he heard it, it’s not like I was keeping my voice down. He came up and asked when I last took an ativan, with one in hand – thanks Dad, you want to drug me now – and then told me I should take one every 7 odd hours. “Yeah. Just like I’ve been doing for the last two days.”
He went on to say the same thing Tracy said to me, that set me off in yelling at her – the yelling I was going to try to get out here alone – in that no one said I couldn’t be down there with her, that I should go down and spend time with her, it’s just when she’s asleep… things that don’t make sense, since I never said I wanted to sleep down there, and all I’ve been doing is sitting quietly, either watching, reading, or writing. The thing is, when it was all three of us in the kitchen, I was told she’s not going to die when I’m down there, that it will only be with Tracy, and that’s why Dad’s staying away, and why I should, too.
Pretty hard to read that in any way other than I should not be down with my dying mother.