Tag: rhonda (Page 2 of 2)

rhonda writes: day 2

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 2, Friday

I wake up they tell me that a buncha’ friends trickled-in to visit me earlier. They were turned away because I was sleeping. They find out that I’m in hospice and all assume that dying is imminent. I am much too quick to tell them that I am only temporarily here until I go back home or a care facility opens up for me in Pella. I am not one of “them.” I am not dying soon, anyway. Mike talks that it will be soon. I don’t say anything, but I feel hurt. I feel very alive.

The nurse walks into my room, wide-eyed. I quickly ask her for tea–my usual request. She looks so harried, like she’s busy with something more important than my drink request. She says, “We are really busy now. We just had two deaths. That never happens.” She runs out of the room to get ready for two mini-memorial services. I don’t ask who. I remain quiet. Surreal.

We are four.

After a good amount of time I hear a harmonica with a clumsy “God Bless America.” Alive. Because I have been lifted and deposited into my wheelchair, I wait by the door to watch a mortician wheel away one shrouded body. I just wanted the new experience of seeing death. My friend is similar, only she likes to sit in a moonlit cemetery. “It’s not so much a meditation on death, as it is on the transcendence of life.”

My musical choice for death would not be patriotica.

Today I do not stare at the walls. I even go out the door to the kitchen. There is nice light through the windows. I see Betty “cruising” around in her manual wheelchair. I wonder if she can even see anything from her permanently bowed stature.

Angela and Shawn come with Josh, Angela’s just-about-a-man son, and Subway for our weekly gabfest. Lunch date in a hospice house.

Today’s topic naturally falls to eagle eggs. “Do they get fertilized before or after they’re laid?” Shawn asks, completely straight-faced. Angela and I don’t know how to respond. Is she serious, we wonder? Neither of us makes fun of the question because we don’t know how to treat it. Is she serious?

Our initial disbelief fades into smart-ass banter. “I know,” I say. “The male eagle gets hot and bothered around a female eagle. Then he ejaculates and uses his feathers to wipe the “seed” all over the eggs. Eggs are especially porous. Abracadabara! Eaglets.”

Eagle ruminations in our usual segue style naturally lead us to bird watching. Out of a couple seconds of silent reflection on birds and sex and eagle eggs Angela launches a question. “Fertilization? How do birds procreate, anyway?” “Hmm,” Shawn is thinking out loud. “Are birdwatchers not nature lovers at all but porn voyeurs? Are they really trying to sneak a peek?”

Josh perks up. “I’ll just Google ‘bird porn.’” That’s a good idea, I’m thinking as Angela herself perks up. “No no no. You better not Google anything related to porn.” We all laugh. “Duh.”

Tomorrow I will ask Mike for forgiveness.

I name my new 2011 journal “As I Lay Living.” Shouldn’t “lay” be “lie”? Or did Faulkner intend “lay” to be active? Should I really be questioning Faulkner’s language usage? Maybe I should read the book.

The weather is unseasonably warm. Phil, the chaplain, stops by with fresh coffee from Smokey Row. We sit on my private porch, both not believing that it could be 68° in January. We agree that God is revealed in the dry pre-spring landscape. Coffee with a new friend…

I spend the rest of the day getting ready for a book club baby shower. By “getting ready” I mean that I ask my aide to set up seven folding chairs around my room. I plan to stay in bed. I guess all eight of us will be here.

Jane is all aglow. We throw baby presents at her like confetti, like little scraps from a roomful of gushing and doting oneness. Jane’s daddy support is sometimes there, often times absent. We hate him for his absence but love Jane and Owen. We gush. We dote. Jane glows.

Welcoming life in solidarity. After all, hospice is a place to celebrate life.

Jean tells me later that we have a new companion–a woman. Her gender is all the information I can ask.

We are five.
Go here to read Day 3

rhonda writes: day 1

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

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.

~~~

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