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.
~~~
Rhonda, Yes, we read to know we are not alone. I am here reading your words, and through them I have a small window into your world. I know it is small, yet I can catch a glimpse of your vast spirit and wisdom…and love for the truth.
Julie
Rhonda, I believe you when you say, “I write only the truth.” I will read every word.
Rhonda, I believe you when you say, “I write only the truth.” I will read every word.
Rhonda, I believe you when you say, “I write only the truth.” I will read every word.
Rhonda – do you wonder about the people who are reading your words? Do you wonder if we are searching for something in your words? I have lost two of my closest friends, both around age 30. I often times find myself gravitating towards anything that will explain to me what it is to die. I want to not be scared for them anymore, even though they are gone already. I want them not to die, even though they have died already. I want you not to die.
Hello Rhonda.
thank you for your gift of sharing ~ the truth, the truth you will introduce us to and the truth you are helping us to remember. I love words, I love the images, the connections, the soothing, the startling, the beautiful metaphors.
Rhonda, I am grateful that you will show us magic and miracles and Truth. We did choose this human state for now. I applaud your courage.
I send you love,I wish you comfort and new adventures.
Tears in my eyes… thank you for sharing this so openly with us, You writing is real and honest and beautiful, and your spirit shines right through. I wish I had the perfect words of comfort or solace or wisdom, I have none. All I have right now is an ear, and I will be listening to your story.
Dear Rhonda and Jeanne. Thank you for this. I have tears of joy and grief in my eyes. Rhonda, I will bear witness to your life, your words, your truth with my whole heart.
thank you…
Hey Rhonda-
We’re about the same age. I’ll be 42 in December. I have boys named Ike
(13) and Rubin (20). I have floated on noodles with my kids. It’s really
nice. I wish you could experience it too.
And I wish that Mike didn’t have to say goodbye and leave you there.
Are you the youngest person there? What’s the food like? Do you have a
door on your room? Is it hard to sleep? I hope the place smells okay,
and that you have things to look forward to.
Rhonda ~ gosh. I think I went from Reading your story to Feeling your story when Mike kissed you goodbye and left. He left. I feel like I’m not the same person I was when I first started reading your writing. Sometimes, words fail as communication vehicles – and sometimes, they link hearts and spirits like nothing else can. You are so brave. You, Mike, Marco – you are all so brave. How I wish my thoughts weren’t so clumsy right now. Bless you for lifting me out of myself and allowing me to experience Grace-in-Motion.
Rhonda…I will be here with you, as I am right now. Tears in my eyes for you and for “the truth”…which sometimes isn’t very pretty and neatly packaged. I am 60 years young and wish with all my heart that you and Mike and Marco could celebrate your 60th b’day together.
I thank you for having the courage to share your journey with us. I send you love and prayers and I will do that daily. You are on my heart. Sleep well tonight and God Bless you and your family.
Rhonda, truly I see the Infinite in you. Thank you for your words, I feel them. Thank you Jeanne for bringing her words to us. We all stumble in the dark together. And the Beauty of it is we are never alone. I send you both heart hugs and huge purple butterflies who paint graceful arcs around you in gold glitter dust.
dearest Rhonda – sometimes there isn’t anything that could possibly be any braver than staring at the wall. Your truth stirs admiration.
Wow,
I am gratefull that someone is bold enough and open enough to share such an intimate story. So many times people go through it and dont know what to expect.
I hope this journal of accounts can get published and also that you eat a lot of cookies, chochlate cake, slam back some cinnomin snapps and party like a rock star before you go^^
This inspires me to start writing about the details of my Mother when she had non Hodkins Lymophia.
Hi Rhonda!!
Thankyou so much for sharing your story and experinces. I am so glad that you can get online to help pass the time. I would like to extend something magical to you……That helped me through a difficult time.
At your young age I believe this is something that will be fun and awesome and best part its free to play!! There is no catch. I was able to be reborn into a virtual world and experince something that I never would be allowed to experince in real life.
I went to http://www.secondlife.com a virtual reality game where you can chat with friends, see other virutal replicas of exotic places you never got to see and best of become the person of your dreams!
I chose to become Aluviel Nakamura. A Japanese girl. Once Inside the game I got to see what Japan looked like. I then decided that I wanted to see what it was like to become a Geisha. I got as close to real life education and experinced what it was like to perform onstage!!
If you want the house or mansion of your dreams, stand up at a live poetry reading and be praised for your works, you can even write virtual books and sell them. It gives the freedom of choice to live out any fantasy, be anything or anybody. Darque_Orchid@yahoo.com
Rhonda, I will be turning 42 very soon, if I make it there, if any of us do. I write, but have no children except the 4-legged variety. Doctors thought I had MS several times — I just share my experiences to say that I will be reading your writing with interest. I read recently a quote, ‘people will never forget the way you made them feel.’ So I know that you will be providing plenty of memories with your words. I know you want to share with all, but the written messages you leave for your son will be held so dear to him, I know. Hearts and minds can fade away, but the written word can last forever. Peace to you, and all those you share space with…
Rhonda,
I’ve only just met you and already you have moved my heart and quieted my spirit.
He left. I know that had to be tremendously hard…I’m not going to try to say how hard really because I’ve never known hardship like that. I wonder what he did when he left. Did he sit in the car and sob? Did he drive, in a trance, home and wonder what next?
Did you feel like, if you sat still enough, you’d become invisible and this wouldn’t happen? That so sounds like something I would do.
Thank you for sharing…you’ll make us all better people for letting us read your words.
Thank you so much for sharing your story.
“Only when I am more fully interacting with the world, do I move with power and wisdom.”
Something for all of us to remember.
I have to admit I smiled whe I reached “Comfort. But not the music I want to die to.”
May your spirit remain as resilient as that always.
Rhonda–Your words put us right in the middle of where you are: the sounds and the tastes and the smells and the feelings. The harshness of the reality you are facing is just as you described it — a crash.I hope that as the days pass you are able to find spaces of comfort. I’m keeping you in my thoughts.
Amazing, powerful writing. Neither of you know me, but I’m an IMA graduate, Fall 2010. Read about this project through one of Caryn’s blogs, and I’m utterly stunned with the connection and compassion between Jeanne and Rhonda, and the “awake-ness” of Rhonda as she chronicles her days. Thank you, Jeanne, for sharing Rhonda’s words and encouraging her to write, write, write, and to Rhonda for write, write, writing. I know now what Lise and Ellie talk about when they encourage us to be brave in our writing, and I’m humbled and grateful for both of your words.