Don't get me wrong – my husband and family were wonderful, provided beautiful flowers, poignant cards, a book of exquisite poems by Ted Kooser, a precious little stuffed animal, and took me out to dinner. I loved it.

All of the love and fun, however, did not assuage the sadness I felt on Sunday. My beloved mother died eighteen years ago today and in 1995, May 14 was Mother's Day. 

I am thinking of the day of her death and want to share an excerpt from The Last Violet: Mourning My Mother, Moving Beyond Regret:

May 14—I am grateful I have the presence of mind to get up early and pack everything I’ll need for the Big Spring Piano Recital and Graduation Recital this afternoon. I am thankful that I decide at the last minute to go help Jan [my sister]bathe Mother before Les and I go to the church.

 

We set everything up; the first program goes beautifully. During the reception between the two concerts, Renée [my sister-in-law]comes to tell us that Mother’s condition is deteriorating rapidly. Her respirations are only three per minute. Although I have to desert the five precious girls who are giving their last recital, my only thought is to get to Mom in time.

 

Joy [our hospice nurse] had told us Friday that we were to keep her comfortable, giving her morphine as often as we noticed retraction. It would, as promised, relieve her sensation of suffocation and the struggling respiration. It is very efficient to give it in tiny amounts at short intervals. Karen [my daughter] prepares the medication; Nick [my physician brother] watches for retraction; I administer the doses. The rest of the family keeps vigil.

 

It is hard to continue giving morphine, knowing that it might hasten her death, but we have pledged that she will not suffer. Sometimes her teeth are clenched shut and I agonize that I am forcing her.

 

From 4:00 in the afternoon until 11:58, my eyes never leave her face and I am taking her pulse as it gradually fades, then stops. Her eyes are open, but she isn’t looking at us— her gaze focuses beyond us, and it is clear that she sees that which we cannot.

 

And so, on this Mother’s Day, my beloved mother dies. I gently close her mouth and hold her chin in place until it stays. I tuck the covers around her. She looks more peaceful than she has for eleven weeks—maybe more peaceful than she ever has.

 

We wait in silent good-bye, hearts breaking, until 2:35 a.m. when two men from the crematory come to take her body. They wrap her in a white sheet, twist the ends shut, and carry her out.

 

Dear God, I have no mother.

Les and I have belonged to a small support group through our church since 1969. Of the original nine couples and one single, seven of the men and three women had died. Floyd, the one remaining man beside Les, had been having a rough spring and we had wanted to visit him and his lovely Lynette in Loveland, Colorado.

Since Les' November brush with mortality, his subsequent pacemaker, and various ups and downs, our doctor had asked us to stay close to medical care in the Denver metropolitan area. Then in early April, with things somewhat stable, he gave us permission to drive to Loveland. We kept trying to make the trip. Denver had four snowstorms in April; Les had bad days. Things just weren’t working out.

Thursday, April 25, I woke with this strong urge. The weather was good; Les was okay. So we went. Floyd and Lynette seemed grateful that we had come. Floyd had entered hospice care the evening before, but he was up walking around, sitting in a chair, talkative, peaceful. The four of us and son Galen shared deeply. Les and I felt the visit was meant to be. Whether or not Floyd and Lynn needed us, we needed them.

On April 30 Floyd died. I want to share with you, my dear readers, the poem I read at his service:

 For Floyd

We can’t believe you’re gone –
hospice, yes, but only six days?
You were just here – alert, alive, aligned
ready to go, most surely, but still participating

You were such a good man –

Working hard and faithfully over the years   
an expert with your hands
building beautiful things
gracing this space with mailboxes,
coffee mug shelves, the reusable casket

Loyal to your church, your friends, your family
generous, giving, always game for another adventure
another trip, another house, another state

You were such a good man –

steadfast in faith
confident in convictions, vocal in opinions
You weren’t always right, but you were resolute

You battled through cancer and heart attacks
and surgeries with more grace and courage
than most of us could manage

You were such a good man –

We honor you in your unwavering love for Lynette –
with gratitude for how you cared for her, protected her,
and lent her your staunch warmth and unshakable strength

Happy trails, dear friend, our love and tears go with you –   
pile into the motor home of immortality
bluegrass blasting, the fishing streams of Paradise forever filled

May you discover heaven to be lovelier than the hills of Arkansas
and may you find the most amazing adventures ad infinitum

amen

Lois Tschetter Hjelmstad
May 4, 2013

Rebirth

Enter the Valley of Doubt and Despair
certainly vanished
strength fled
Love no longer there

Spend the duration regardless how long
searching soul
resting body
heart without song

Know, with sureness and trust, once again
you will return to  Life
vigor renewed
a fervent amen

Although you may return to the Valley
now and then

(Excepted from This Path We Share © 2010 Lois Tschetter Hjelmstad)

Have a great weekend!

"We eventually learned that while some patients recovered from chronic fatigue syndrome, many did not. However, I was determined not to lose my real life to a disease that, even though a mystery to medical science, was not usually fatal.

"From 1989 onward, Les and I struggled to make that happen. CFS shifted our roles. Doing heavy work made me worse, so Les took over as many chores as he could. We learned to stay at home in the evening. We started going to bed earlier than we preferred. If I could order from a catalogue, I skipped shopping. Friends slowly disappeared because I did not have enough energy to make and keep luncheon dates or carry on a converation when I did go. My family and friends tired of asking how I felt and hearing 'exhausted,' so I started saying, 'Fine.' 

"I increasingly turned to Les for strength and understanding. Only he could validate my journey with CFS; no one else knew or understood how difficult it was for both of us.

"Sometimes I dreamed about CFS. I would be visiting relatives or attending a party and feel too exhausted to lift my arms or legs; I felt as if I were disappearing into nothingness. The dream always frightened me to consciousness, but it was the one nightmare from which I could not awake.

"The rivers of entropy flowed on. And we knew that we could not stay in the Garden of Eden, no matter how hard we tried."

Most of the time, I accept my limitations. After all, I have had twenty-four years to adjust. It is part of the fabric of my life. CFS and my breast cancer a year later changed everything. And nothing. 

During all those years since April 6, 1989, I had two separate mastectomies, gave up teaching piano, wrote three books, traveled by car over 400,000 miles (without homicide or divorce?!) to speak more than 600 times, spent precious never-to-be-forgotten hours with my beloved husband and our four children and their families. 

But I know that there are many CFS patients who cannot live their lives, no matter how much accommodation they may try to do. I have been extremely lucky and I feel unworthy of the good fortune I have had. I am trying to give back as much as I can out of gratitude.   

This thread to be completed tomorrow with a poem…

Please let me continue the excerpt from Fine Black Lines:

"Aside from Les and our children, I told no one about the diagnosis for two years. I tried to hide my symptoms, rested on the sly, and made excuses so I wouldn't have to do so much. I felt a sense of shame in having an illness that was portrayed with such triviality in the media. CFS was dismissed as the trendy disease of the late 80s–the Yuppie Flu.

"It felt neither trendy nor yuppie to me. I was 58; I was a little old gray-haired piano teacher, for goodness' sake. But I discovered what it is like to not know at 10:00 a.m. how I will feel at noon, to stand at the foot of the stairs and wonder how I will make it to the top, to be too tired to lift a pencil or hold a book, to have to rest two hours every afternoon and go to bed by 8:00 or 8:30, to play the piano and have a finger 'lock up,' to have to wear a jacket with pockets (even on a summer day) to carry my arms, and to forget an entire thought in the middle of a sentence.

"When I was diagnosed with breast cancer a year later, I almost felt validated. At least everyone understood that disease and its implications. Almost everyone has heard of the terror, the incredible sense of loss, the fear of disfigurement and death.  [At this point, I'm not so sure how many people actually understand, but that's how I felt then.] 

"There has been no way to sort out how much of my weakness and fatigue comes from CFS and how much has been caused by the cancer surgeries and treatments. I do know it is likely that CFS has caused at least some of the difficulty in recovery and some of the residual pain in the surgical areas.

"And I know that writing has been a lifeline to reality and healing.

"Still, I did not intend to write a book. But when I shared my writing with doctors, nurses, and friends, they encouraged me to share my experience with a wider audience.

"Sometimes I laugh and say I had three things to get off my chest–this book is the third."

To be continued…

Let me share an excerpt from Fine Black Lines:

"On the morning of April 6, 1989, I had an unusual sense of well-being–renewal was evident in the cherry blossoms, the tender leaves, and the gentle warmth. I felt particularly well. But when I got up from a short nap at 3:30 p.m., I knew I was ill. I taught the evening piano lessons as usual. By the time I finished teaching my fever was 104 degrees. My desire to lie down was the strongest I had ever experienced, but I could not stand the weight of even a sheet on my body.

"I assumed I had the flu. It didn't even occur to me to go to the doctor. I thought, I'll just stay in bed over the weekend and I'll be fine by Monday. After four days I felt a bit better and my fever had returned to almost normal, so I resumed my regular schedule–I didn't want to get behind, with the Spring Recital only weeks away.

"Six days later I awoke with more intense pain, weakness, and lack of motion in my hands, wrists, knees, and ankles. I could barely pick my coffee cup, walk to the bathroom, or stay out of bed. By evening, a dense purple rash covered my lower legs. The clinic nurse practitioner did not have a clue what was wrong. Neither did anyone else.

"For five months I was periodically tested for Lyme disease and other possible causes for the continuing sore throat, headache, low-grade fevers, joint pain, overwhelming malaise, and other assorted symptoms. In September my new internist diagnosed Chronic Fatigue Syndrome (CFS).

"I was relieved to have a name for the problem. I was not relieved to think of having something about which so little was known and for which there was so little help."

Nothing has changed and yet everything has.

To be continued…

Then this week that discussion was followed by another excellent post and discusssion at Regrounding. Even though the topic has been quite thoroughly and thoughtfully covered in these previous posts, I'd like to add a bit.  

So, is there a herarchy among cancer survivors? Is there one in breast cancer circles?

Having spoken hundreds of times to quite diverse cancer support groups, as well as to oncologists, nurses, and others in the cancer community, I have experienced many layers of:

• You didn't have chemo, so what gives you the right?
• Your lymph nodes were not positive, so you're home free.
• You're lucky it was only breast cancer.
• You aren't Stage IV. Everything else is a piece of cake.
• You didn't suffer as much with your treatment; you didn't have chemo before Zofran: you didn't burn and peel with your radiation.  
• You can't call yourself a victim; that shows you are weak.
• You can't use battle words; or, you must use battle language.
• Your chronic fatigue syndrome didn't totally put you in bed for years. (Forgive my straying into another disease. But I've heard this a lot.)
• You must identify as "survivor," "thrivor." "victor," "totally made it." (Forget about the part that breast cancer can recur years later.)
• We must be brave, courageous – keep our friends, family, casual passers-by reassured.

I've also lived quite a long time. Guess that puts me pushing toward the top of the hierarchy of "I'm older than you and I know better." But maybe I won't play that card, even though with all of this well-earned gray hair and many wrinkles, it is terribly tempting.  

Let me repeat some of what I commented on Marie's blog (with amplification):

There is always hierarchy. Everywhere. In every circle – family, sports, health, illness, religion, politics, young, old, male, female.

I don’t know if it is more prevalent among women than men; it may seem so in junior high, but it probably just exists in different arenas.

There is something within us that seems to compel us to play one-upmanship. In disease circles, maybe it is self-preservation. If I can figure out what stupid thing you did to make yourself sick or caused yourself to die, I can avoid that and save myself indefinitely.

I try to guard myself against participating in hierarchical maneuvers, but certainly don’t always succeed. I have deservedly been put in my place a number of times.

When I am the recipient, my hope is always that I can find the grace to give the other person the benefit of the doubt – realizing that there is no way I can walk in her shoes or divine her motives or identify her. I simply do not know why he or she has chosen that path or why he or she needs to de-elevate me. 

On the other hand, no one can put me down if I won’t go down.

It doesn't say who wrote it, but judging from the words and the mentioned date, I'm pretty sure it was my Uncle Bill, searching for, hoping in some way to find peace.

Dad never had so much to say;
Jogged along in his quiet way
Driving his horses, Mike and Queen,
As he turned the soil to the golden sheen.
Used to say as he slapped the mare,
One thorny hand in his tangled hair,
"Rest in joy when your work's well done,
So pitch in, son."

Sometimes he and I'd not hitch;
Couldn't agree as to which was which.
Fought it out on the same old lines
As we grubbed and hoed 'mong the runnin' vines;
And his eyes would light with a gentle quiz,
And he'd say in that old soft way of his,
As he idly stroked his wrinkled chin,
"All right, son, you win."

Dad was never no hand to fuss;
Used to hurt him to hear us cuss;
Kind o' settled in his old ways,
Born an' raised in the good old days
When a tattered coat hid a kindly heart,
An' the farm was home, not a toilin' mart,
An' a man was judged by his inward self;
Not his worldly pelf.

Seems like 'twas yesterday we sat
On the old back proch for a farewell chat
Ere I changed the farm and the simple life
For the city's roar and bustle an' strife.
When I gaily talked of the city's charm
His eyes looked out o'er the fertile farm
An' he said as he rubbed where the hair was thin,
"All right, son, you win."

'Member the night I trudged back home
Sinkin' deep in the fresh turned loam;
Sick and sore for the dear old place,
Hungerin' most for a loved old face.
There stood dad in the kitchen door,
An' he says in a voice from deep within,
"Hello, son, come in."

On the sixth of May, after the latest snow,
He went the way that we all must go;
An' his spirit soared to the realms above
On the wings of a simple-hearted love.
An' I know that when I cross the bar
I'll find him there by the gates ajar,
An' he'll say, as he idly strokes his chin,
"HELLO, SON, COME IN."

Yes, looking for a peace that he never found.

On May 6, 1944, thirteen years old and suffering from German measles, I lay in bed, feverish, headachy, and itchy, unable to sleep. Around 11:00 p.m., I heard the phone ring and my dad answer. He woke my mother; they whispered; she stifled a cry of anguish. More phone calls. After thirty minutes or so, they came to my room to tell me that my beloved Grandpa Nikkel was dead. The next day they traveled to Colorado to attend the funeral; I was left to care for my nine-year-old brother and five-year-old sister (with help from a neighbor). It was the first time that death had come close to me and I was exceedingly sad.

But I had never seen that clipping until today:   

Funeral services will be conducted tomorrow for Bernhard Nikkel who was killed Saturday evening by the compeller of an airplane soon after his son, William Nikkel, had landed the machine near the farm home.

The tragic accident occurred as preparations were being made to moor the plane near the Nikkel house for the night. A landing was made at the Nikkel farm and after an exchange of greetings it was decided to taxi the plane across a fence to place it near the house for the night. The elder Nikkel and the passenger of the plane were holding down the wires to allow the pilot to take the machine to the parking spot and some rocks interfered with the movement of the wheels.

Mr. Nikkel removed one rock and threw it aside and had picked up another. No one saw what happened, but it is presumed that as the man straightened up he probably lost his balance and pitched forward into the whirling propeller. He was struck on the head, the blow severing the top of the skull. A doctor was summoned as soon as someone could get to a telephone, however he had died instantly….

I had always known more or less how it had occurred, but, oh, my God…

My Uncle Bill never fully recovered from the event. Who could?

He tried to find peace. In my next post I will share the poem I found with the clipping. 

That advice can be medical, pseudo-medical, psychological, career, parenting, marriage, faith-based, dating, you name it.

This morning I interrupted my decluttering of several stacks of paper to check some blogs I follow. (Admit it; the Internet does provide great procrastination material.) Anyway, I found a very interesting post. Well-written story. Also humorous. Check it out at PinkUnderbelly.

And the next time you are on the receiving end of unsolicited advice, whatever its brand, do what that sassy gal from Texas did:

1. Be polite
2. Run the other way as fast as you can
3. Declutter your mind immediately (Hey, I'm trying to stay with my theme.)