Tag: death (Page 2 of 2)

rhonda writes: day 1

August 30, 2011 / jeanne / 28 Comments

Lotus

This post is penned by my friend, Rhonda whose multiple sclerosis landed her in hospice in January of this year. Rhonda is a writer, and though she she’s not afraid of death, she is not ready because she still has so much to say. Like any writer, Rhonda wants to know her words are being read, so when she recently gave me her journal entries describing her first week in hospice, I offered to post them here on my blog. I am doing only light editing – formatting, mostly, and deleting the occasional sentence that the software was unable to understand and interpret. Because of the disease, Rhonda doesn’t have the breath support to string together long sentences or to sustain any volume to speak of. When we talk on the phone, she is very patient as I repeatedly ask her to repeat what she just said or repeat back the bits I understood, asking her to fill in the gaps.

You may want to start here then follow the links at the end of each post to read yourself current. It means a lot to Rhonda to know how her words are landing in the world, so please leave a comment if you feel inspired to, and she will reply as and when she is able. Rhonda writes with the assistance of talk-to-text software, and some days her energy level doesn’t even permit that, so if she doesn’t reply to your comment, don’t interpret her silence as anything but a lack of available energy or available assistance, as she now requires help to do the most basic things that we take for granted. Somebody is reading your comments to her, though, you can be sure of that, and she is receiving them with a grateful heart. From both of us, thank you for being here, for bearing witness to this remarkable, amazing woman.

~~~

Day 1, Thursday

I came here without thinking that hospice really had much to do with dying.

I plan to write in this journal as I have the chance. I will share my first week here. I write only truth.

I recently brainstormed a list to leave for my son, Marco when I pass away. It lists all of the things that have been most important to me throughout my life. I’ll leave it here in snippets:

READING AND WRITING

Reading and writing make me feel more alive.

I love to read. I love to write. I know that I am not alone.

“We read to know we’re not alone.” C.S. Lewis

I long to journal write. More than writing in order to remember, I write to consider what I think and feel. Only when I am more fully interacting with the world, do I move with power and wisdom.

I was reasonably healthy before multiple sclerosis separated me from my family. Hospice will keep you for a while, I understood. Just until a new care facility has an opening in Pella.

This assumption that going away from home was only temporary proves that I really don’t accept the direness of my situation. I am not like most people my age. I am not like most other wives and mothers. I can’t escape with Mike to a Caribbean island or to somewhere warm for a golf vacation. I can’t float on noodles with Marco over to a poolside refreshment kiosk for smoothies with umbrellas.

Playing the head disconnection game of “I would be” will only let me fly in the clouds temporarily before I realize they aren’t as cushy as they appear, and I would eventually fall through and bonk my head as I crash up against reality. Mike and I will never take a vacation together. Marco and I will never float on noodles. Surreal.

Barb comes by to welcome us. She checks-in the new patients with questions regarding name, birth date, and funeral home of choice. Mike and I look at one another in disbelief because we had never considered the question. “We haven’t really thought about it yet,” I said slowly and ethereally, as if speaking from The Twilight Zone. “That’s okay,” she said, crossing off a necessary question. “Just be thinking about it.”

When I arrive five other rooms are occupied. We are full. I get there in the afternoon. I smell the cookies baking. Comfort House, they call it. Comfort for the ones dying but especially for those grieving. Comfort.

I am “comfortable” when Mike leaves. In front of the faux fireplace he leaves me. With a goodbye kiss he leaves. Mike leaves. All afternoon I sit in one place, never moving, hardly blinking or breathing, unbelieving that I am actually in hospice. Hospice at 42. Alone. All I really want to do is stare at the wall. Without my family. Surreal.

Betty, hunched over in her simple wheelchair and laboring applesauce to her groping lips, is the first patient I see–but only from across the room. All of our rooms are singles. Only family allowed. Death is otherwise private. Betty has no family here, they say. Dropped her off, moved her in, then left. Does she stare at the walls, too?

I am reading about Mother Teresa’s decades of “darkness.” She initially had a very intimate experience with Jesus, so intimate that she heard a voice (Jesus’, she thought) that bid start the Missionaries of Charity. Like Jesus, she experienced God in darkness. Like Jesus, she suffered.

Joe loves to watch the eagles. We are hooked-up to wireless. Joe doesn’t watch TV, booming at rock concert decibels the Iowa evening news–dueling corn reports–like the rest. He watches an eagle cam. Hard to have much hubbub for us voyeurs, though, when the extent of excitement is watching big Mama eagle re-situating herself on the three eggs. So that I don’t miss the action, I bookmark the site on my web addresses. I watch too. It’s the rhythm of the place.

As the day is dying down a lonely harmonica plays church hymns. Resident? Family member? Soothing, sometimes missing-a-note, music. Comfort. But not the music I want to die to.

~~~

go here to Day 2

naked

August 29, 2011 / jeanne / 28 Comments

Lotus

My friend Rhonda has seen me naked.

Seriously.

Rhonda and I met in graduate school where she was a semester ahead of me. When she told me that a section of her thesis involved nude portraits of several women, I gladly volunteered to buzz around helping her recruit, my unspoken way to show appreciation for the absence of my name on her list. The last night of our residency, Rhonda plopped down in the cold metal folding chair to my left and asked, “So, are you gonna’ pose for me?” “Absolutely. Yes,” I said, the absence of hesitation surprising me. “Just tell me when and where.”

We met early the next morning, when the air had a crisp edge to it and layers of fog added dimension to the landscape. “I have two special places picked out for you,” she said as she led me first to the Meditation House, a small one-room-with-a-fireplace structure on campus. I wasn’t really nervous, but you’d never believe that by the way nonstop chatter (mostly about my body issues) poured from my mouth as I disrobed while Rhonda readied her camera.

“Oh,” she said with a tone of surprise as she looked up to see me standing completely naked. “I was only going to photograph your top half.” We laughed, then I shrugged and she shrugged, positioned my fully-nude body in front of a wall whose age could be gauged by the various colors of peeling paint, backed her tripod up (considerably), and snapped away. That done, she beckoned me follow her into the woods where I eventually sat my naked bum on moss and logs and the occasional stick or stone, the click of her camera providing us background music.

It was my first and only nude photo shoot, and well, etiquette books just don’t cover such things as this. Figuring the less said the better, I said nothing on the outside, but oh my goodness: on the inside, my arms stretched out wide enough to embrace the earth – the whole planet, I tell you – and my head threw itself back with a smile bright enough to confuse the moon. On the inside, my entire body laughed and danced and delighted to be a part of this project celebrating women and their bodies in all their varied shapes and sizes and (so-called) imperfections . . . a project made even more significant by the fact that Rhonda has MS, Multiple Sclerosis.

Winter semesters found her using crutches, but the heat of summers was hard on her body, sometimes forcing her to resort to a wheelchair for transportation. Sitting in circles was not at all an infrequent occurrence at Goddard, and as we sat in one circle, I made a rare audible contribution and noted the dramatic change in Rhonda’s mobility when she held a camera in her hands. Give her a camera, and Rhonda sat on top of picnic tables, climbed trees, stood in chairs – why I believe that girl would’ve crawled to sit on the roof of the bell tower if it meant getting a better shot. With her muse in hand, the transformation was a sight to behold.

She found a small, seldom-used room for her Graduating Senior Presentation and lined the walls with our nude portraits. I thought there might be some nervous tittering, but the silence of awe ruled the day. Rhonda spoke quietly about the project, sprinkling her words with comments we’d each written after our respective photo shoots.

She’d recently seen The Vagina Monologues, and in keeping with the tradition, she wrote her own Vagina Monologue, including it as a chapter in her thesis. Words haven’t been invented to tell you how downright tickled I was when she asked me to read her V.M. as part of her presentation. Lord, that was fun.

Rhonda is now in hospice, and though she doesn’t fear death, she does dread it a bit because she still has so much she wants to say. And there’s so much we need to hear. “Jeanne, they tell me to rest,” she said in a recent phone call with a tone that’s as close to whining as I’ve ever heard come from her lips. “Fuck that,” I said. “You can rest later. Now you write. And write. And write.”

And write she does – with the aid of talk-to-text software – when and as she can. Her computer nearly crashed week before last, and she’s just getting everything set up again. I’ve offered to host her writings here – the essays she’s currently writing about life in the hospice, interviews and chats we’ve had and will have, and eventually her thesis. There’s no schedule here – I can’t tell you when or how often her words will appear, I can only tell you that they start tomorrow. There may be a post a day, there may be multiple posts a day. There may be days between posts. It goes as it goes. I’ll tweet (@WhollyJeanne) and post on Facebook (InJeanneious and WhollyJeanne) when there’s something new here, so be sure we’re connected, or just peek back in when you think about it.

And listen – don’t be shy. Take a few minutes to talk to Rhonda in the comment section – make your comments as long as they need to be, come back and leave additional comments if you think of something you wish you’d said. Rhonda doesn’t flinch. She doesn’t flinch in living, she doesn’t flinch in dying, and she doesn’t flinch in her writing. That’s one of the many, many, many, many reasons I love her. Talk to her. Let her know what succulence you take from her words and how they touch you. Join me in bearing witness and holding the space for Rhonda to live and live fully until she dies.

~~~

Go here next . . .

currently in progress

November 21, 2010 / jeanne / 24 Comments

i am living the story i want to tell you. yesterday afternoon, my husband got a call from his brother: his oldest daughter – my first niece – walked in from work the night before to find that her partner had shot and killed himself. it’s sunday morning as i write this, the 21st of november 2010, and i’m flying to colorado in just a few hours to see my niece.

sounds so simple when i write it like that.

i married into a small family of doctors and engineers. linear thinkers who are quite sure about the way things are and should be. they have degrees from highly-regarded institutes of higher learning. their practicality, clarity, and confidence intimidates a writer and slow cloth storyteller gal like me. their consistency eludes a constantly changing creative like me who also has a graduate-level degree, but finds it hard to focus on one thing long enough to develop a reputation as anything even approaching an expert.

[i struggle to type the word “creative” in the sentence above. it takes several minutes before i finally mash the “c” key. same goes for the word “expert”, but the hesitation is for different reasons.]

i begin looking for flights right after we hang up. even though we don’t know the funeral arrangements yet. even though there’s nothing, no specific assignment of something we can do. even though, even though, even though.

about an hour later, i call my brother-in-law to check in, to see if he wants me to call their aunt. they are a small family, my in-laws, my family dwarfs them in sheer numbers, which is to say, i’ve buried way more loved ones than they have. i think about things like the distraction of notification, about the salve of collective love.

[i am having trouble writing this. the censors chirp and caution me against being too uppity, getting too big for my britches. they remind me i’m not the only one who is empathetic and caring. they ask if i’m really, seriously trying to say that i’m good at being there in times of death, dying, and grief. they point out that i have no degree, no letters after my name signifying that i’m qualified and competent enough to do this kind of thing.]

“that would be great if you’d call aunt ginny,” he says. “i didn’t even think about that, and i don’t have her number.”

“happy to,” i tell him. “we’re looking at flights now,” then i hurriedly add that my son kipp who also lives in denver, will pick shuttle us to and from the airport, my way of assuring donn that we will be no trouble.

“you don’t need to come,” he says.

“we want to come.”

“but there’s nothing you can do. we’re her nuclear family. we have friends, and she has a lot of friends here.” he rattles off all sorts of reasons to defend his position that we should not come, then he delivers the sucker punch: “you’ll just be in the way.”

you’ll just be in the way.

let me be really, really clear here: there was no malicious intent in those words. he did not stop and think before he said them, they just tumbled out. which, to an armchair jungian psychologist like myself, gives them added impact. without knowing it, donn has just ripped open my tender place and poured a barrel of salt into the ever-gaping wound.

i think of myself as a committee, and now the dissident, snarky committee members go into full volume yell, starting with “i told you so.” his words, their words form a chorus that sets me back and the questioning of self begins:

Q: what will you do out there, anyway?
A: i don’t know.
Q: then he’s right: you’ll just be in the way.
A: maaayyybbbeee.
Q: don’t you have other things to do?
A: yes, but nothing better.
Q: it’s thanksgiving week. have you considered that?
A: yes, but that doesn’t seem the point.
Q: donn says she’s coming home this week and that maybe you can see her then, right? doesn’t that make sense?
A: it makes sense to that particular part of my brain, but my heart . . .
Q: oh, pshaw. why don’t you think about somebody besides yourself for a change?
A: i thought i was. i only wanted to fly to colorado and give betsey a hug.
Q: what will you say when you get there?
A: probably nothing. words haven’t been invented.

so in just a few hours, my daughter and i will climb into that big chair in the sky that will deliver us to denver. we’ll rent a car, meet up with my son, and tonight or maybe tomorrow, i’ll walk into a room and see betsey. i will try not to get in anybody’s way, try not to take up too much space as i make my way to her to deliver the only thing i have to offer: a hug with all the love i have coursing through me, seeping from my arms into her gentle, bruised, grieving spirit.

i’ll let you know how it goes.

~~~

many thanks to karen for putting these support stories. i am honored to be asked to participate and to be the company of such compassionate writer people.