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.
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.
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