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