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.
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.
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