End of Life Issues | Telling the Truth

May 25, 2017

Letting go my desire for survival

I’m missing the routines
that keep me steady
and grounded.

Living moment to moment—
So happy to be with her again,
my daughter.

A little off-balance in my daily life—
Grateful for a quiet mid-day
so I can write, eat, be with myself and rest.

The rain has stopped and the sky is brighter.
Still feeling the edge of cold damp air
on my hands, legs and torso—
Wore my wool undershirt today
and flannel-lined jeans.

I want to mother her—
The thought of end-of-life stuff
gives extra meaning and urgency to our visits.

Have I been faithful to her?
Always such a distance to travel
for such a small bit of time.

Is it time to practice letting go—for good?
Whatever that means—
I’m not sure.

I’ve never done this before.
Neither has she—
So many unknowns.

It’s hard to see through tears.

Just being alone for a few hours in this house
feels sad—too empty,
too quiet.

What will it be when she isn’t here—
Or when I’m not here?….

***

I wrote this journal entry during a recent week-long visit with our daughter and her husband. Our first visit with them since I learned I have Chronic Kidney Disease. Surprisingly, the words sing to me–sweetly and sadly. No rushed or distressed cadence. Just the leading edge of a reality unknown to me as a mother.

© Elouise Renich Fraser, 25 May 2017
Response to WordPress Daily Prompt: Survive

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May 1, 2017

I don’t know where to begin…

So I’m just going to blunder along for a bit. Which is, I’m told, the best way to begin. I think Eeyore would agree with me.

I’m a total novice when it comes to Chronic Kidney Disease (CKD). It wasn’t on my horizon and it isn’t in my family of origin.

But that doesn’t matter now. I have it. Stage 3A. In fact, I probably passed ‘Go’ well over a year ago without even knowing it.

So here I am. Floundering around, lurching through each day with emotional highs and lows, energy highs and lows, eating highs and lows, and little sense of overall wellbeing.

High means I’m upbeat, alert, happy to be alive, and at peace with my body. Giving happy hugs to D.

Low means I’m virtually asleep, can’t move a muscle including my brain, and don’t want to look at another healthy smoothie or make another easy-to-chew soup or stew. Weeping silently or openly. Collecting hugs from D as needed.

Do I feel sorry for myself? No, I don’t. Nor do I ask God, “Why me?” There are millions of us out there with this disease. What I regret is the relative invisibility of the disease—often until it’s too late.

Which raises the question of my status. You might think Stage 3A out of 5 stages is fairly decent. Answer: It is and it isn’t. It’s better than Stage 3B. That’s when you start talking about what’s coming in Stage 4 (preparation for the end game). Followed quickly by Stage 5 (dialysis, kidney transplant and, sooner or later, death).

At Stage 3A I have the possibility of leading a different yet fairly ‘normal’ life. That means constant attention to self-care, lab tests, and endless appointments with various doctors. Some people are able to reverse the progress of CKD, but it’s rare at Stage 3. Difficult but possible at Stage 2; often possible at Stage 1.

So what’s the solution? For me, I’m in a crash course I didn’t want. That means reading books, finding online resources, talking with family members, facing the reality that this is a terminal illness for which there is no magic pill. And of course, writing about it, especially about how I’m feeling.

It also means reordering each day as it progresses. Do I need to take a little nap? Meditate? Write my heart out? Do nothing but sit on the porch listening to the birds? Listen to music? Take a little walk? Have a good cry? A good rant?

This is an invisible disease. If you could see me, you probably wouldn’t know anything’s amiss. Most people without CKD haven’t heard much about it, think they won’t get it, or don’t know how to determine whether they’re at risk. Yet millions of us have it. Go figure.

I’ll post more from time to time. Not necessarily because you need to know, but because I want you to know and it helps immensely to write it out and make it public.

Thanks for visiting and reading!
Elouise♥

28 Comments

April 23, 2017

Sabbath for My Body

Dear Friends,

It’s been a while since I wrote about Sabbath Rest. I’m learning the hard way that this isn’t just one day a week. It all began a year ago, in April 2016, and now includes a new health challenge I found out about this month.

On April 6, 2016, I received my spectacular pacemaker, Lucy. She’s now one year old, and has demonstrably changed my life for the better. Lucy is my upbeat (!) silent, invisible champion. She’s on call 24/7, making sure my heart rate doesn’t wander below 60 beats a minute. No more fainting spells.

Then, on April 21, 2016, my first day out alone with Lucy, I tripped on uneven pavement and fractured my jaw. Full stop.

Things will never be the same in my mouth. Wired jaws, lessons in how to use my Vitamix, pain and agony, sheer exhaustion as night became day and day became night. No description can capture it. I thought it would never end.

It’s still difficult to form some words. Still, most of the pain is gone and I’ve regained significant lateral movement in my lower jaw, though my bite will never be the same.

My broken jaw pushed me over the cliff into adrenal fatigue. Thanks to my integrative doctor, I now have a regular pattern each day and night. That means I have energy most mornings, and am ready to sleep most nights. No more erratic nighttime insomnia, or falling asleep in the middle of eating during the day.

Regular rest stops are my new normal. This means putting my feet up, taking short naps, and meditating as needed during each day. I want to stay grounded in what really matters.

Then about 2 weeks ago my doctor confirmed a new challenge: Chronic Kidney Disease, Stage 3a of 5 stages. This came with little warning; my emotions have been all over the map. I’ve had several tests this past week to measure the extent of the damage.

Just for today I want you to know what’s happening. I’ve talked about end of life matters several times this year. The Shape of Forgiveness series was one such issue. So is this.

Are end of life issues my present calling in life? I don’t know. I do know that today, tomorrow and thereafter every part of me is invited into Sabbath Rest. Even though it may not always feel restful or inviting.

Praying you’ll find rest for yourselves each day of this coming week, beginning now. Blessings of inner peace in these troubled times.
Elouise ♥

© Elouise Renich Fraser, 22 April 2017
Photo found at kellyjohnsongracenotes.com

10 Comments

March 20, 2017

Crazy Happy Lady

For several weeks I’ve been thinking about end of life issues, wondering what my daily ‘plan’ is for getting from here to there. How will I order my life each day? I don’t own the time my Creator has entrusted to me. So how will I invest it?

Whatever chaos is, it’s the way I’ve experienced most of my life. A chaos of competing priorities, demands, expectations (yours and mine), rules and regulations, political realities….

I’ve spent years trying to get through and beyond chaos. Yet here’s what happened this past weekend.

From my journal:

It’s 3:30pm, Saturday afternoon. I’m not exercising in the house, not cleaning up the kitchen, not vacuuming, not playing music, not reading a book, not writing a poem, not going through files and piles, or anything else except this—showing up and writing this journal entry.

How I feel right now: weary, unmotivated, discouraged, somber….terrible. Wasting time. Trying to practice centering prayer yet falling asleep. Watching time slip away.

Do I enjoy this? I don’t think so, but sometimes I wonder. Perhaps this is more enjoyable to me than changing my habits.

…My most lethal enemy seems to be lethargy. A kind of glue that keeps me from having an active agenda of things I love to do.

My mind goes through tricks like these:

If I read a novel, I’m wasting time. If I play the piano, I’m wasting time. Can’t I see how much work needs to be done in the kitchen, the house, the attic, my office?

If I walk in the house or ride on my recumbent bike or bounce on the rebounder, it isn’t ‘real’ exercise—so why bother?

There’s a crazy logic here—if I do this, I won’t be able to do that. (Or it won’t count anyway.)

And then there are all those other good things I’m not doing that haunt me—

Sending notes and cards to friends who need encouragement

Vacuuming the house

Cleaning the curtains and windows

Weeding out unneeded kitchen utensils

Taking things to the Salvation Army or some other charity

Like I said in my last entry, I don’t have a plan for organizing my life. It seems all I do is make sure my food needs are met, wash laundry when absolutely necessary, rest and sleep enough, and do other maintenance work that demands my attention.

Later that same day (Saturday evening now), I was back to my journal. Here’s what finally broke through the chaos and lethargy and made me crazy happy.

From my evening journal:

The best part of today: posting this morning and getting tomorrow’s post ready to go. I can’t begin to express how important blogging has become for my growth and enjoyment. I’d even put it on the same level as walking out of doors. Even ahead of playing the piano…and reading.

Which led to my Crazy Happy Lady List of Priorities – things that top my list of things I love to do just for myself.

Writing – if not for my blog, in my journal
Walking – outside if possible, with no agenda but enjoying nature
Music – playing the piano or listening to music I love
Reading – poetry, novels, books that help me navigate my life
Meditating — wherever I am, day and night

As for other activities,

As little as possible
As efficiently as possible
On an as-needed basis

Thanks for listening, and Happy Spring!

© Elouise Renich Fraser, 20 March 2017
Elegant Photo of Woman Writer found at salon.com
Response to WordPress Daily Prompt: Label

21 Comments

March 18, 2017

bleak building revisited

Who would have guessed this photo and my haiku would lead to bigtime self-reflection? For those who missed it, here’s the haiku–a comment on the photo above.

massive bleak building
harbors untold histories –
I quicken my pace

From the day I laid eyes on the photo, it freaked me out. I didn’t want to look at it; yet I couldn’t tear my eyes away.

It wasn’t just the building’s condition, it was its size. Looking at it, I felt small and helpless, as though I’d wandered into a nightmare that was closing in on me.

Yet the more I looked at the building, the less afraid I was. I noticed renovations on the adjoining building, clotheslines, and a carpet hanging over the balcony rail. Also how close neighbors were to each other.

When I wrote the last line of the haiku I wasn’t sure what I meant. Was I speeding up to get past the building, or was I quickening my pace to get closer? Perhaps to discover clues about the families who lived there, and what happened to bring about massive abandonment of these apartments.

I don’t have answers to any of that. Nor do I know in what city or country this bleak building stands. I do, however, know I’m drawn to it, especially at this time of my life.

These days I’m thinking about end of life issues. Not because I have a terminal disease, but because I’m terminal as the woman I now am. Figuratively as well as literally.

I don’t want to keep mopping up the now defunct quarters passed on to me by my parents and their parents. Especially quarters that served to reinforce ways I was shamed and blamed a thousand times over.

No way.

Yet some of this is still housed in my female body, soul and emotions. No, it doesn’t torment me now the way it did in the past. It does, however, come back to haunt me from time to time. Seeping up through the cracks. A looming presence that erupts when I freak out—as I fall over the cliff yet again into panic, anxiety, and the urge to fight back against anyone and everything.

I’ve spent years identifying and letting go of pieces of my past and my desire to change it. It’s been a life-changing reclamation project. A project that began in my childhood, despite what was beaten into me in a misguided effort to beat things out of me.

What would it be like to live as though that never happened? I’ll never know. Not in this life.

I do, however, know there were and are things no one can ever beat out of me. Things I love. Things that make me happy. Things that bring me joy and peace. Things that connect me to my Creator and to my family and neighbors. Things no one can beat out of me no matter how diligently or brutally they try.

I also know there are gems in that old building. They’re waiting for me to discover and own them. Treasures I don’t yet know belong to me. Parts of life envisioned for me by my Creator who knows and longs to give me my true name.

So yes, I’m quickening my pace as I move forward into unexplored territory and beyond.

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Tag: End of Life Issues

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