Posts Tagged ‘coping mechanisms’

Unwanted Anniversary Part 3

My journey with chronic fatigue syndrome continued and continues. I wrote of it again in This Path We Share: Reflecting on 60 Years of Marriage. This small excerpt shows some of the ways we coped:

"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…

Unwanted Anniversary Part 2

After my diagnosis of chronic fatigue syndrome, I was embarrassed, mortified. What had I done to cause it? Had I worked too hard? Was I too much of a Type-A personality?

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…

It’s January. Declutter.

Last January I wrote a series of posts on decluttering, because this is the month I try to get that done in real life. I still have hope that I will get to it this month, but I’m getting a frightfully late start, so we’ll see. Who wants to declutter in February, the month of love?

However, we can start with this story:

My dear mother died almost eighteen years ago and my beloved father followed three years later. (Those numbers astound me. It seems as if it could have been yesterday. Of course time has mitigated the pain somewhat and I don’t think about them every hour on the hour anymore, but it still hurts to actually stop and look at their photographs hanging in the hallway. Most days I avert my eyes. And I would give almost anything to spend an afternoon with them to “catch up.”)

When my dad died suddenly and unexpectedly, leaving us three grown children orphaned, I had just had major abdominal surgery. In the ensuing six weeks, my brother, my sister, and I engaged in the usual frenzied activity that often follows a death. We cleaned out his belongings; we held an estate sale; we sold the house. In our hurry, a lot of paper-related items came to reside in my home.

This past week, some fourteen and one half years later, I invited my brother and sister to spend a full day with me – breakfast, lunch, and dinner – so we could finally deal with the two overflowing drawers, three large heavy totes, and the two-drawer file cabinet that contained the rest of their effects, multiple scrapbooks with multiple pictures, and almost sixty-six years of marital history.

(I stand corrected about the meals. Actually the three of us ate so much for breakfast that we elected to skip lunch and have an early dinner.)

While we definitely had a feeling of accomplishment at the end of the day, an emotional and physical adventure was had by all.

We tried to sort out and keep anything clearly historical in case one of the grandchildren or great-grandchildren should want to do a genealogy or write a book someday. Or just know from whence they came.

Then we dismantled some of the scrapbooks, each of us claiming the pictures that pertained to our own families. But how do you tear apart volume after volume that your mother had so artistically and painstakingly put together? You might as well tear out your heart.

On the other hand, what good are the scrapbooks if they are stored in my basement? And why would we ask our children to make these kinds of decisions? They already had received many mementos when Mom and Dad died.

So how do you throw away piles of old pictures? Even if you don’t know the names of the people in them? Even if your children will most certainly not know the names? These were real people. They don’t deserve to be tossed away. But as the oldest person left in our family, if I don’t know who or what the pictures are, it seemed useless to keep them.

How do you toss the many beautiful anniversary and birthday cards, invariably signed “Love,” from Paul to Bertha and Bertha to Paul? We ended up tearing off the beautiful fronts and sending them to St. Jude’s Card Project for use in making new cards.

How do you discard letters from friends who clearly loved your parents a great deal, even if your parents and their friends are gone?

It was a difficult day.

How did we do it?

With pain in our guts and holes in our hearts.

Reconstructed Breasts?

On my birthday last week, Nancy published a guest post that I had written for her. It was an especially nice thing for my birthday. I include an excerpt here:

I missed my left breast mightily. I struggled for days, weeks, months to make my front look okay. I stuffed the empty side of my bra with crumpled paper; my bosom rustled. I stuffed it with socks; they lumped. I tried filling homemade bags with rice; they sagged more than my right breast.

It was a bit easier after my second mastectomy fourteen months later. Whatever I tried, at least the two sides matched. But by then, lymphedema had set into my left arm and torso—wearing a bra was not an option, although I did try. I bought a mastectomy bra and two heavy matching prostheses. I wore them once, but I was so miserable that I donated the whole contraption to another woman.

Besides, something within me rebelled at hanging an uncomfortable harness on my frame—so I could put something uncomfortable in it, so that those around me were not uncomfortable. God forbid they should be reminded of their mortality.

What to do?  

Read the rest of the post here:  Nancy

And how did you handle a breastless chest?

 

How Can We Be Loyal Friends?

I found a wonderful post about loyalty over at http://pinkunderbelly.com (click on Loyalty on the right side. Nancy talks about feeling the loss of a favorite baseball player being traded and most of us can relate. I certainly can. Just when I get to know a player and develop an attachment to him (because he is a hunk or some other noble reason), he gets traded and the next new best thing comes on board. I wonder if a bit more loyalty from the teams to their players and the fans might be more important than the bottom line. Maybe our loyalty to the players should be considered.  

And in Nancy's post, this brings up loyalty of friends when your like suddenly tanks. Sometimes–just when we really need friends because we have had bad news of one sort or another–some of our friends slip back into the woodwork. I've done it myself when one additional thing seems more than I can handle.

So–how can we be there for another person when our own coping mechanisms are low? How can we extend ourselves when we are hanging on by our fingernails? Can we learn to be empathetic without losing ourselves in the process?