The 70273 Project

with a side of Jeanne Hewell-Chambers

Tag: dying (page 1 of 2)

Remember Rhonda Patzia?

Some of you may remember the words penned by my friend Rhonda about her life with multiple sclerosis and life in hospice that I shared on my blog a few years ago. I met Rhonda in graduate school where she routinely shed her crutches and the clutches of multiple sclerosis when she picked up her camera. It was a sight to behold watching her climb picnic tables to get better shots.

For her thesis, this former professional photographer named Rhonda asked women to allow her to take nude portraits of them. Though I cheered her on and even recruited for her, I admit to feeling a wee little bit left out that she didn’t ask me . . . but then, on the last night of her last residency, she flopped down in one of those hideous metal folding chairs and asked, “So, are you going to pose for me?”

“I thought you’d never ask,” I told her.

We met the next morning in the meditation house, one of the two locations she chose for my portrait, and she casually mentioned that she was also going to take some shots of me sitting on some moss in the woods because she had more than 36 exposures to spend and I was her last model. As I stripped completely naked in front of those beautiful walls with their layers and layers of peeling paint, I chattered with nervous excitement. When i neatly folded the last article of clothing, Rhonda looked at me and said, “I was only going to photograph you from the waist up.”

The portraits became a part of her thesis and went on to become a traveling exhibit that moved the country around with and without her accompanying workshop. Rumor has it that they are being compiled into a book. I’ll keep you posted.

Rhonda also asked me to read the Vagina Monologue she wrote as part of her thesis, and I tell you what: I don’t know when I’ve had so much fun or been so honored. That woman is just full of surprises.

Rhonda’s courage, her determination to live even while dying, her deep dedication to writing the unblinking, undiluted truth about her life with multiple sclerosis and her life in hospice has been a constant source of inspiration. I love her.

I’ve just received notice that Rhonda is in the final days of her earthly life, and I thought maybe you’d like to take a few minutes to send her on her way by reading her story then leaving her a note in her journal over at Caring Bridge. Her family is reading all notes left in her journal to her as she transitions. Whether your read her writings or not, thank you for giving her a fine send-off with your thoughts and wishes, and thank you Caryn Mirriam-Goldberg for letting us know.

seeing spots

Dyinga6

Dyinga9

sometimes death comes
at the hand of
natural causes,
sometimes death comes
at the hand of
freak accidents,
and
sometimes death comes
at the hand of
man and woman’s inhumanity
to man and woman.

it’s hard
there’s no doubt about that,
but if you can pause,
take a deep breath,
and look death
right square in the eye,
if you can hold yourself steady
and gaze at it long and hard
from a place of curiosity
and wonder,
if you can stay
instead of running away
at the first possible moment,
sometimes,
every now and then,
you see spots of beauty.

Dyinga12

rhonda writes: day 7

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 7

Alive!

One week here and I haven’t died. I won’t for a while. It isn’t possible. If I do, will they really shroud me too? I’m not like “them.” Yes, they will wash my dead body then shroud me just like they do to everybody. Will they be sad to see me go?

The husband is singing to his wife again and the harmonica plays again. Consistency. Home sounds. The house will get two more borders later today. Who will they be? Will I learn about their quirkiness before they die?

Mike sneaks in and grabs me from behind when I’m at the computer. “Nubby!” “Hey Moo! I thought I’d surprise you.” “Why are you here so early?” I’m dumbfounded but not sorry that he came without notice. “I thought you would want to see these letters.” He pitches them into my lap. “What are they?” He smiles. “They’re from the people who found out you’re in hospice. Should I read them to you?” He opens a letter already.

All letters were similarly solemn. Words like “sorry,” “tragedy,” “keep smiling,” “faith” and “love.” I am touched but not weepy. When Mike finishes I gather them up and present them back to him. “Please take these home and put them in my study.” He looks at me sadly.

“This room is your home now, Sweetie.”

So Real . . .

Michelle comes in to empty my catheter bag. In between trips to the toilet, we plan Mike’s birthday party still four months away. Michelle was busy telling me about a fun time she just had with her friends playing paintball. My eyes light up at the story. “That’s it!” I gush. That’s what I’ll give Mike for his birthday: a paintball party! Do older people play, too?” “Sure,” there are even people in their late 20s (she is 25).

Mike loves to play like a little boy. What an endearing quality!

When Mike brings Marco, I can’t contain my giddiness. “I am so excited about your birthday present!” I realize how silly I must sound to be overcome with anticipation four months before “the Day.” All the while that I’m talking to him my internal voice warns me, do not tell. Don’t you dare tell!

rhonda writes: day 6

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 6

Silence this morning is like an augury. The harmonica. It plays hymns. Somberly. Clearly.

“Joe has passed,” announces Sue. Joe who watched the eggs. Joe who Skyped his vacationing daughter. Joe I would really like to have met.

Joe’s family asks Bob to play his harmonica as Joe passes.

Sue tiptoes in again. “That’s sad, Sue.” I don’t cry, but I remember that he added light to the community here.

“Not really.” Sue is perky. “Joe couldn’t wait to see his wife in heaven.”

Three eggs still.

I imagine this stretcher leaving with shrouded Joe, Joe I never met.

We are three.

Before getting out of bed, I finish up another chapter about Mother Teresa’s darkness. I put it down and will never pick it up again. I wanted to read about Mother Teresa’s years of “now done darkness,” to feel better about my own.’

The book is a compilation of letters to her spiritual directors. As she sent them, she would write also to beg for their eventual destruction–preferably by burning. I feel really guilty for having begun the book. In a way, it is as if I am reading a most private journal. Sometimes honesty shouldn’t be communal.

The writer wanted to emphasize her great humanity and her great faith.

I saw Mother Teresa in Calcutta in 1992. I saw her humanity:

3/27/92

I have seen Mother Teresa several times now at Mass or at evening prayers. After the nuns are on their third or fourth repetition of “Holy Mary, Mother of God,” I usually lose concentration and watch Mother Teresa. She is really beautiful. She has osteoporosis, so is permanently bowed before God. Bowed on her knees before God during prayers, she looks like the fruit of the spirit incarnate. Love Joy Peace Patience, Kindness, Goodness, Faithfulness, Gentleness, and Self Control are all shining from her ashen face (she obviously hasn’t lain out in the sun lately) I watched her say her rosary and could see that it was hard for her to catch her breath between each line of prayer, and when she finally did, her lips seemed to move faster, as if she were playing catch up. A little cough or stopping to lick her lips would also put her behind. Even though she has been really sick, she seldom misses Mass and prayers. That demonstrates a tremendous amount of strength and devotion because when I am sick I would much rather focus on God and pray from my bed, than get up and do a bunch of sitting and standing and kneeling and standing Catholic aerobics. I did catch her nodding off one day. Her head was falling falling and just as it was about to hit bottom she caught it and sprang it up again, blinking her eyes big on the recovery. I liked that because it proved her human.

Mother Teresa said that if she ever were a saint she’d be the saint of darkness. Please let me hold your hand.

I get out of bed, since I’m always uncomfortable here. Robin comes in for a chat, stopping by after visiting her husband with Alzheimer’s in another care facility. She visits Ray daily.

She knows my pain.

Robin is the retired college librarian and knew a former occupant of my bed. I didn’t need to know that. I like to believe that I am the first person in this bed.

She tells me that she is working on a new reading project for Iowa schools based on the conclusion that the books we read throughout our lives seriously impact us.

She promises to come back soon. I remind her that I will only be here until I go back home or to a new facility…or . . . She nods her head.

Does she sympathize with me, imagining my losses in motherhood, marriage and vocation? Does she shake her head in disbelief that anyone could go on with such loss? I shake my head, too, but I go on. Surreal.

Don’t be too long, I think as she goes.

I spend the rest of the day at my computer. I send e-mails. I write in my journal, my connection to myself and the world. I finish composing my list of important things to my life. I do all this with voice recognition software. I can’t type, but I still have a voice.

I fall asleep remembering books, my favorite books. When I was five I loved Yertle the Turtle. At ten, Watership Down. 12, Steinbeck’s The Pearl. 15, Steinbeck’s The Grapes of Wrath. In college, Dostoyevsky’s The Brothers Karamozov. In my 20s Thomas Merton. In my early 30s Albert Canus’ The Plague and Cormac McCarthy’s Blood Meridian. In my mid-30s feminist writing. Presently, Joan Chittister’s writing.

I do not fear death. Death does not silence voice.

Go here to read Day 7.

rhonda writes: day 5

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 5

Do they still really think that I’m dying? Dr. Vandezande thought so before. Chronic infection, he said. An open heel wound. Trouble swallowing and breathing. Does he still believe it? I’m not like “them.” I feel so alive.

The harmonica is buzzing away again. Church hymn patriotica again. The keyboard accompanies a voice–one person or two?¬–that matches the accordion exuberance. Dueling cheesy hymns again. The musical quirkiness never ends.

Theresa comes in dangling something in front of her nose and smiles at me sheepishly. I know what time it is. I did this two days ago. An every other day schedule has brought me to this time of flashing my butt hole to the world. Michelle closes the blinds, even though I assure her that nobody can see in when it’s light outside. Besides, I say, are there Peeping Toms who hang out at hospice in the daylight?

Bowel Program, that’s what they call it. Basically, it means sticking something up my butt so that I can poop. Mike laughs that the medical lingo is so proper, so sterile. You don’t “do a bowel program” you “ take a shit.” You don’t “void” you “take a leak.’

The harmonica and keyboard both stop. A man’s voice rises steadily through the silence. I recognize the melody. Love song. The old man serenades his unmoving but bright-eyed wife. I can’t see them from my bed, but their image, tender unto death, transcends walls and time. The man ends his private concert with “Come home. Come home. You who are weary, come home…”

I am ready to get up. Theresa and Jean lift me out of bed with the robot grabber thingy that they call “Hoyer Lift,” deposit me at my computer, shut my door, and I play Miles Davis on Pandora. Am I a music snob in the corner room, or am I just asserting in my private way that I would rather die to jazz?

Later, I am sitting by the doorway. Mike all alone walks by my room on his way to the kitchen to get his usual cookie. I wave to him as he passes. He waves, too. Is he shy? Carol sees us “You still really love each other.” She sees it. I feel it.

Today is the day.

When Mike returns I ask him to sit on the bed in front of me. I take his hands both in mine, I stare into his eyes, planning to never lose the intimate contact. I will speak from the heart. “Forgive me …” I begin with the words of contrition and continue to list the horrible ways I have treated him, ways of people at war not in love till death do we part.

Among other things, I asked for forgiveness for verbally abusing him in ways that I find really shameful now. For forgiveness for ever making him believe that I didn’t think him a wonderful man. “You have been an amazing husband and Daddy.” Forgiveness… Please forgive me.

Mike leaves to get Marco from school. They will return after dinner. I feel happy.

Hubbub. A new patient has arrived from the hospital Long Term Care unit. Another was going to come also, but didn’t want to leave the familiarity of nurses and CNAs from the hospital. Will this foster child be yanked away soon, too?

Dying is not such a hard thing to suffer. Dying alone must be terrifying.

We are five.

Marco bops in again with Mike. We all love the bouncy boy vitality he brings to this place. The room always smiles when he enters.

Sometimes he flies all his toys that Daddy bought him at a unique flying gadgets toy store, specializing in all kinds of super flyers: planes, paratroopers, and manually twirled spinney flier thingies. Sometimes we play Yahtzee. Sometimes I Spy.

“I spy with my little eye… something that rhymes with… snow tire.” “no tire,” Marco guesses quickly. “No, Monk,” I gently instruct, “you have the right idea about how to make a rhyme, but you need two completely new words, one that rhymes with snow and one that rhymes with tire. I was thinking of f-a-u-x fire.” I point to my electric fireplace.

“That’s too hard.” Mike quickly joins the conversation, as if to scold me for being tough on the boy.

“He’s bright. I’ll use it a couple times. He’ll eventually get it.” I turn back to Marco. “Sweets, faux means fake or pretend. Not real.”

We’re bored. Great time to play golf! Mike has his clubs, and Marco has his kinda kiddy ones. I have my wheelchair. Together we go outside to a nearby field and hit the ball back and forth.

Before I had children, I used to dream about being a mother to at least three and showing them the wonders of the world: streams, mountains, silence, balls, bodies. I never ever dreamed . . . of this sitting and watching. Surreal

We return, well refreshed but a little windblown. Happy. Alive! While we were away, the new patient died. We feel sad that he didn’t get to experience the comfort of the Comfort House. No harmonica, accordion, or synthesizer commemorates his life. He is just gone.

We are four.

After a death the place gets even quieter. I do not hear any music for a while until the harmonica begins playing solemn hymns.

I turn to Marco. “Sweetie, I spy something that rhymes with blow wire.”

“Faux fire!” He is beaming.

Go here to read Day 6.

rhonda writes: day 3

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 3, Saturday

The place is buzzing with family sounds. The harmonica is playing church hymn patriotica. I smell cookies baking. My husband, Mike and my son, Marco fly a paratrooper in Central Hall with high ceilings. The itty-bitty parachute is a patchwork of lime green and orange mango, scraps that once soared for real.

I once soared also, but I feel grounded. What can it mean to fly now?

LuAnn stops in to say goodbye. She is setting off on a six-week travel adventure to Ecuador. I am happy for her. 50 with a husband and two at-home daughters. What has my life become? Surreal. I am traveling vicariously these days. It hurts, but I am happy for LuAnn.

EXPLORATION

We will never find until we first get lost.

We can’t begin to find ourselves until we spin dizzy enough to lose ourselves, to lose the old status quo.

I didn’t know what I believed until I traveled far enough away to be able to point behind and say, “not that.”

“There are roads there are roads and they call, can’t you hear it?
Roads of the earth and roads of the Spirit. The best roads of all are
the on es that aren’t certain. One of those is where you’ll find me till
they drop the big curtain…” ~ Bruce Cockburn “child of the wind”

“Two roads diverged in a wood,
And I, I took the one less traveled by,
And that has made all the difference.” ~ Robert Frost

Mike takes me home with him. John and Beth will arrive soon to our house. When I enter the room they swarm around me. “You look so wonderful!” “What beautiful color you have in your cheeks!” “Rhonda…” speaking loudly and slowly, “this is our grandson, Jacob.” I feel like I’m 10 years old.

When they figure out that I will not be dying in the next five minutes, they pick up their general chitchat. As usual John has brought music to introduce us to. He is a music professor at Iowa and doesn’t leave his work behind him too far.

Mike shows them the book of my travels with Tracy around parts of Asia and Africa in 1992. I recently got it in the mail from Shutterfly, after working on it for 14 months. John is bummed that he didn’t bring the album of a musician friend with MS who was too weak to play the trombone, so made a composition of playing the singing bowls. “The album is a testimony to the undying creative impulse.” “Darn!” “Next time…” He stares out the window.

John asks if I interact with the other patients. “No,” I say. “I don’t know what I think about that,” he says theorizing.

Mike and I leave for “home” when they do. They say they will come again soon. I remind them that I’m only at hospice for a very short time before they move me to a new care facility when a room opens up. We laugh and wave as if our parting is like any other. We drive the five blocks in silence.

COMMUNICATION

I love, therefore I communicate. I love Mike and Marco, therefore I communicate with them.

Sharing with others thoughts, feelings, and experiences makes me happier.

We will never have a good relationship, unless we are independent enough to be dependent.

I don’t support a politician unless she or he respectfully communicates with me, with my country, and with the world.

Sometimes the best form of communication is silence.

Scott holds the front door open for us. Quiet now in the Comfort House at seven o’clock except for the singing. A catatonic woman in a wheelchair is serenaded by a similarly bent man pulled up to face her in his walker with a seat. Mike and I go slowly by. “Why here?” I ask Mike. He shrugs.

The woman has light in her eyes, but she doesn’t speak or move. He starts a song I know. “Softly and tenderly Jesus is calling, calling for you and for me…come home, come home, you who are weary, come home….

There is a lot of multi-voiced revelry booming from the room next door, the room with the gentleman (all men are gentlemen here) who watches the egg sitter. Joan comes to greet us. I ask her what’s going on. “Joe is Skyping his daughter vacationing in Cancun.” Joan is obviously enraptured by the lightheartedness of the unique occasion. “You should meet Joe sometime.”

I am still up at 11, but I comfy-up the room to settle in for another couple of hours. Caffeine has not affected me for five years. Now that the Jazz has kicked-in again, I’m using it to have a nightlife. Diana has given me some faux candles to complement my faux fireplace. Is the resulting ambience faux too? No matter, I’m enjoying my room faux and all.

Go here for Day 4

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.

~~~

Go here next . . .

currently in progress

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.

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