Life as an Extreme Sport

Cue Scene, Stepping Sideways

I’ve stepped sideways, an aware out of body experience. I’m still aware, still feeling the tears trickle down my face silently, but I see the scene as though it were a movie. I think the disconnect came from the music – we’ve been playing James Gallway since the hospice nurse left.

I got up off the couch a few minutes go, my attempt at a nap dissolving into hopeless failure. I grab my soda, book, and blanket. Cue scene:

The woman is tall, pale, dark circles under her eyes. She’s wearing bright and happy flannel Eeyore pajamas that seem to have done a swap with her – Eeyore is smiling, she’s the one with the gloomy frown.

She walks into the kitchen a bit stiff, pops a couple of pills from the bottles, and grabs a donut hole. She bounds quickly down the short flight of stairs, ready to tell her waiting family that they should have bought more donut holes when a lifted finger and alarmed look from her sister stops her cold.

She freezes in place, taking in the room. Her fater is to her left, sister across the room from him, and between them is a hospital bed. A hospital bed occupied by their dying mother. Curled to one side of her mother is the cat, a soft round ball of possessive watchfulness.

The tall woman walks quickly across the room, to the easy chair directly across from her mother. Tears almost immediately begin their silent course down her face.

Her mother is gaunt, pale, eyes sunken. Her shock of short white grey hair is pushed permanently back and off her forehead, a fashion that would be so contemporary if it wasn’t because of all the hands smoothing he rhair back as they comfort themselves kissing her goodbye.

The younger sister, in her sweats and Bryn Mawr top, is slowly but steadily tending to their mother. She dutifully checks the pulse rate, the O2 saturation, the pain levels and dispenses the bolus as needed. She wipes their mother’s forehead with a damp cloth tracing the hollow curve of the cheek. Gently, gently, she swabs the inside of the mouth with a sponge soaked in water – the only way they can get her any water without starting a line, and they are all in agreement there – no lines.

The father just sits back and watches this, accustomed to the girls and their medical knowledge trumping his. His eyes are closed, but he’s listening – you can see it in his smiles and frowns.

Capturing a Moment

We’ve triangulated around Mom’s hospital bed, Tracy in the place of care, Dad across from them, me at the foot of the bed. I’ve just come downstairs, almost bounding, but was hushed by Tracy as I lifted the curtain to come in. Tracy was watching a portable pulse-ox machine intently. Dad’s eyes are closed, tired resignation all over his face.

I froze in my tracks and immediately my gaze goes to her chest – I hold my breath. Is she? Did she? She shudders then, a deep and wracking noise. Dad shudders slightly in time.

I walked, then, quietly to where I am at the foot of the bed. Small bit of sedatives aside, the tears start falling, tracing quietly down my cheeks. And then the weirdest thing happened – just, my self, I shifted sideways and suddenly saw the entire tableau in front of me differentl. The sisters, reconciled of their differences, the older respecting and honouring the younger’s talents, following her lead and letting te family baby be in control. The tired father, watching his daughters with pride, his wife with deepest sorrow.

With clinical precision, I noted my mother’s shrunken, gaunt body, the pendant of St. Peregrine still on, watching her heart beat, still strong, through the paper thin tissue of her chest.

The detachment continuing, I look around the room – I see the pale beige flowered wallpaper, the honey chair rail, the new light and ceiling fan above Mom’s bed, the gathered chairs, one empty of any visitors we can see but, but with a stuffed animal holding the space as a proxy. I see the pool table shoved against the wall, covered in family photos and medical equipment and a new flat screen TV, video and DVD player tucked behind. The sewing machine turned into a table for more photos, lamps, and a wall of plants Mom has nurtured over the yeras, as she nurtured us.

A thought like that, I think, should send me sobbing. Instead, a lone tear trickles down my face, and I am almost bemused.

What the hell – my logical detachment thinks – is wrong with me? I go through the possibilities, even as my brain notes the perfect warm coffee colour to the drapes that separate the room from the rest of the house, the tasteful touches, from homey blankets to small religious statuary and icons covering both Catholicisn and Buddhism.

Could I have taken too much of the sedatives? Too much pain killers? No – normal amounts, normal times, what else? I had eaten, but that’s a good thing. Maybe, I think as my gaze shifts back around the room and another tear silently escapes, I’ve gone into shock?

And then, as my eyes cross the curtains again, they catch glimpse and it hits me – the music, some instrumental music provided by James Gallway – is playing The Wind Beneath My Wings, and it is the final detail, the little necessary touch, to make me feel as though I am in the end scenes of some dramatic movie.

I almost laugh, getting strange looks from both Dad and Tracy.

The song shifts to Angel of Music and I curl up in the easy chair, pull the blanket over myself, and watch my dying mother struggle to – I don’t know if she is struggling to live or to die, but she is struggling.

I watch her, slowly, tears continuing to fall until I drift off into a light sleep, her face burned on my mind.

melancholy whirlwinds

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.

pretty sure I’ll never do the bargaining bit

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.

~*~

I have, for the record, turned off all my IM programs save one, and on that one I have blocked everyone but the single person I actually harbor no anger towards. I’m probably going to stop email, too, but haven’t made that decision yet. I know I’m lashing out, and I don’t want anyone else to get caught in my own whirlwind of pain and anger.

modes of communication

We thought her consciousness had passed beyond us. Hoped, really. It would be easier, the essence gone, the body needing to catch up.

We were wrong. She’s still in there, she’s still struggling to communicate. It started last night, when Tracy told her she was going to sleep in another room – she began to twist and move, make faces. Today, when hospice was here, the nurse asked her if she was in pain, could she squeeze her fingers?

Nothing.

The nurse switched hands. “Can you squeeze my fingers if you’re hurting?”

Nothing.

“Can you squeeze my fingers if you are not hurting?”

Nothing.

The nurse repeated this with blinking, with raising eyebrows. Nothing, save the one time she felt the most gentle of squeezes.

I stood in my corner thinking she was gone, she was gone, it’s just the shell of the body remaining… and then the nurse asked Mom to stick out her tongue if she was hurting. And Mom did.

The nurse asked Mom to stick out her tongue if she wasn’t hurting.

Nothing.

Maybe it was a fluke. Timing. Random movement. The nurse asked again, and again, Mom stuck her tongue out, firmly, with force.

She is still here, she is still trying to communicate. She opened her eyes, deliberately and focused, for the first time in 48 hours.

When the nurse swabbed her mouth with a sponge (for hydration and relief of dry tissues), Mom sucked on the sponge fiercely, with determination to get water.

How much of this is reflex, and how much is it my mother is trapped in a body that won’t let her communicate, won’t let her tell us anything, trapped in pain? That, that is the most horrible thought for me – locked in, aware but unable to communicate that awareness. It terrifies me, it fills me with anguish and fear – to not be able to say I’m in pain, I hurt, I want to move, or anything else. Thank you, I love you.

strange hopes

There are strange things to hope for in life. Being woken up by my sister, so she can tell me Mom has died, is probably going to top the list for a long time. But it’s true, it’s what we’re all hoping for. She’s been semi-comatose all day, and we’re pretty sure she just checked out completely while the chaplain was attending to her. She has gone from being agitated, talking, trying to move, get water, wanting to hold our hands with desperate grip, to being curled within herself.

Mother, that which is called death has now arrived. You are leaving this world. But in this you are not alone. This happens to everyone. Do not be attached to this life! Do not cling to this life! Even if you remain attached and clinging, you do not have the power to stay. Marianne, beloved child of Christ, beloved wife and mother, dear friend, the time has now come for you to seek the path that will lead you away from us. Like the moon reflects on the surface of the water, you will always be reflected on the surface of our hearts.