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

5 Comments

  1. Millejoa

    Faux comfort…Hmmm.  makes me think.  I believe the most courageous of us seek and savour the comfort – faux or not.  We choose our times for rage, and when rage chooses us, it is tough.
    silent communication break.
    I am wishing you independence, in all ways that are possible.  I am wishing you respect – this is sounding like projection – I have to be careful of my tendencies to try to fix.  I see you whole- Are you with me  – two souls out there floating to our favourite points. How does it feel to know that you are reaching many with your words?  Do you know that whollyjeanne was the fairy godmother for a writing project? 
    Tell us about your family.I am 55  Julie Daley is the same age.  I have some health issues & some mental ‘injury’brilliant I am now facing.  My life feels blessed.  I am without a partner,am blessed with 3 children 29-36 2 boys, 1 girl. Our daughter and her husband have 1 child, almost 3 – I am a goofy grandma. One son lives in Japan, five years now–We miss him.  He is doing well. our oldest, Scott is legally married to Maria from Guatemala- her visa has just been approved.  We will probably be welcoming Tia Maria in November, Papa wants their church wedding in their home church.
    Bruce Cockburn is Canadian, as am I- I have seen him perform only once.  He is brilliant – as a musician!  and as a poet. I love his phrase `kick at the darkness until it bleeds daylight`
     
    if you enlarge my picture you will see the joyous picture of our grandson.
     
    Keep writing. please.   love to you and your family.  xo  jo

  2. Sally

    Hi Rhonda How are you today? is your pain level ok and tolerable? I hope today is a good day with less pain and you have some sort of break for the weekend. Wishful thinking I know………
    That sux that everyone is talking to you like that. Ms has nothing to do with the ability to hear things correctly.They dont have to talk so slow like your an old Geezer sheesh! We both know they didnt do it to be mean..just unimformed about Ms appaerantly. It must have been quite uncomfortable having them gush over you like that. I can imagine that it mustve been twice as agravating than what was written here.

    I am just so gratefull that you have internet, computer and things to keep you occupied. I would probably die of the boredom before the Ms got to me if I didnt have a laptop to connect  with people. 
    So many of the young generation just sit behind a computer all day and take for granted the ability to get out and just walk around. Or be able to get up and go to the bathroom by themselves.
    I dont usually encourage it, I found a torrent site that you can download the latest movies from. http://www.demonoid.com I know you can catch viruses blah blah. I just read the comments carefully and let norton scan it before downloading anything. They are not taking any new members however I was still able to download from it as a guest. I saw Suckerpunch, The back up plan, Hall pass and a couple of other recently new in theaters movies. I am a full time student trying to get my career back on track with the education to back up the experince of business  admin. So the assignments can be pretty daunting and long hours of research. so I havent gotten out much. Thus explaining why I was watching the movies online that I had missed. I enjoy thriller scary movies. I saw Incidous that had a few gotcha moments in it…
    I wish you a good weekend this weekend. I have to get my assignment started for my marketing class. I will tell you more about what the professor wrote to me and you can search me up on Fb. I am Luvi-samma or luvisamma.

    my real name is Sally
    XOXOX
     

  3. Sally

    Btw I am 40 this september we are close in age so I feel like we connect well and I can relate.

    Sally

  4. fellow traveler

    I shared your words “I once soared also, but I feel grounded. What can it mean to fly now?” in Twitter (gave a link to your blog). You summarize us all. Wish you a wonderful journey no matter what! 

  5. Julie Daley

    Rhonda,
    As Jo writes, I am 55. Jeanne and I are writing partners. I loved reading about your thesis project and can only imagine how thoroughly beautiful it was to behold not only the images you took, but to behold the women as you took them.
    Your words are captivating. As you (or Jeanne) wrote, You only write truth and reading these words feels clean and holy…the best way I can describe how I’m experiencing them.
    With love,
    Julie

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