When The Rhythm Changes



Anyone who lives with chronic disease, especially if it is accompanied by chronic pain, understands how the rhythm and of life can change from moment to moment, day to day and year to year. The music of our lives changes for everyone as we age but for some of us it came down with the crash of cymbals.

We find ourselves dancing to a different tune, if we indeed, are able to dance at all. Basically, everything that composes what we call our lives takes on a different color, temper and pace. Quite often we find the highlight of the day occurs when five o’clock roles forth, we have to rustle up something for dinner and find its time to put on clean pajamas. So often, the day passes and the greatest accomplishment we can lay claim to is to have brushed our teeth.

For those of us who led busy, productive lives this presents a pail full of, wellnothing. Coming to a halt after living a life of usefulness, such as I always strove to do as a registered nurse, that old empty bucket was a constant, daily insult. Not only did I find it fulfilling but as many cannot claim, I loved my work. One of the areas of nursing I found the dearestto me was the give and take of getting to know people; not only my patients but the many varied medical professionals I worked with.

Many years ago when sacroiliitis gave me too much pain to work as a Director of Nursing and I had to resign. I mourned my lost life and cried often. I was lying on the couch sobbing one day when my poor husband, who also happens to be a nurse, was, out of love and frustration at his wit’s end. He said, “Sue, I don’t care about the income, I don’t care what you do as long as you aren’t chewing on my ass.” I realized my illness and pain was all I talked about and the poor man was filled with frustration because he couldn’t help me.

He is a very colorful, big-hearted character and this simple statement told me what a pain in the ass I had become while suffering the same, physically. My deep stress while searching for medical answers and a decent diagnosis, all while watching my life turn into ashes was more than I could bear. It was ultimately my problem and I was alone to find the answers and prayed for them every waking hour. Of course, like most of us who are struck by this form of lightning, I was thrashing about in all directions, always searching, reading, going to doctors and never finding answers. After three years of hearing meaningless chatter from many of our local doctors where we lived then, we went to yet another specialist in Los Angeles who at least recognized my pain in the sitter and knew it had to have a cause. He began to treat me and I began to have occasional bouts of relief. While gaining relief I found the temblor of my life, the rhythm had slowed and the socialization was one of the things I missed the most.

Living with chronic disease, especially if it is accompanied by pain can be a lonely business. I began to feel marooned, “ship wrecked,” and trapped. Betrayed by my own body I had to find new ways to run my household by calling upon my two teen-agers for more help as well as bugging my exhausted husband who worked full-time nightshift. It is impossible to forestall that kind of physical change that falls onto you, much like a huge tree, uprooted from saturated soil, it toppled and my “roof” had fallen in.

As my children grew, went to junior college and eventually moved away to complete their educations or to take jobs, the loneliness became worse. Fewer friends called or kept in touch. Fellow workers from the past also became scarcer as we had less in common. I searched for activities I could do while lying down because that was the only position in which I could find relief. My heating pad became my best friend.

Relatives and the few friends who kept in touch stopped by but none of them could truly understand what I was experiencing. My reaction to the sun became worse as even a brief trip or running an errand in the blazing California sun took its toll giving me sun rash and a piteous night of cramping and diarrhea. That’s when we uprooted our lives and moved to Oregon which was a good move for us because our daughter lives here but I left the rest of my family and friends behind as my husband and I settled in where we now live, a lovely but humble old Victorian home with a view of the Columbia River. The shear beauty of this area acts as a tonic for me but the health issues became worse as two more diagnosis were added to the list of my problems and more recently, they were joined by cancer. Even now the sun is a terrible problem and I have to do what little gardening I do after dark. Sunscreens help somewhat but not completely.

Loneliness is still the old enemy and I have fought to find many ways to combat it. I find creativity the best way and do quilting when I am able, as well as other needlework, writing and reading but now, even that is threatened. One of my diseases, Sjogren’s syndrome has caused damage to my eyes which is extremely frustrating for one who likes to read and do creative writing as much as I do.

As I battle my own demons of disease and destruction of all my joints and metastatic cancer, one of the areas I insist on keeping alive is my sense of humor. I do find laughter is indeed the best medicine and because of that I strive to keep up with the world news but must keep it to a minimum. While so many people in this country are so enthralled by all the horror on television, we have accumulated a large assortment of our own DVD’s. It is a mystery to me why blood and gore, vampires and comic book characters, hatchet flicks, etc. are even considered entertainment for adults. I find biographies and autobiographies enlightening and uplifting. To see how others who overcame difficulties in this life is always fascinating to me and has been since I was a child. Even then I was writing reports on nurses like Florence Nightingale and Clara Barton, and adventuress individuals like Amelia Earhart. Real life is “juicy” enough for me although a good work of fiction can also be enlightening and help to fill the mind with positivity. Any reading that challenges the mind, any television series or film, anything that increases one’s old brain cells and stimulates thoughts other than of one’s self is a good thing. There is a certain period of time every morning when I am waiting for my morning medications to work. Currently, I am starting my day watching a different episode of the ROAD TO AVONLEA which my daughter gave me for Christmas. It’s an older, funny and beautifully made series filmed in Canada partially by the Disney company. Many of you, I know watch Netflix and the Amazon films and if they are good, enriching and entertaining, that’s great. Many of the books on the readers can now have the audio attachment if that appeals to you. The stories we watch and read do have an affect on us and how we think for that particular day.

I bought a new datebook at the beginning of the year and the cover states “THE BEST IS YET TO COME.” I am an elderly woman, living with four diseases, three of which have the power to do me in and yet, I must believe tomorrow brings hope and its share of cheer. I admit I chuckle every time I look at that cover of my datebook. The flowers on it also help to cheer me up and remind me life is full of beauty. I make it a point every time I look out the window and see the thousands of crimson blossoms on the camellia bush that reaches the third floor of our home I utter, “Thank you Lord for all the beauty that surrounds me.” It’s wonderful to see the robins flitting from its branches and the tall berry laden bush next to it. Our new kitten loves to perch in my bedroom window and watch those robins with such great interest and glee. Do cat experience glee? I like to think they do. I know our little Yorkie does as he jumps around each time we’ve been out of the house for more than five minutes. Animals are such a wonderful cure for loneliness. Of course, they create some work but even that keeps us moving.

There is no sure cure for loneliness but the individual, extremely personal ones. For those of you who also suffer this similar fate from some awful disease or accident, please let me urge you to follow your passions, creative gifts, and find some way to be useful or to give back. We can only do what our bodies allow but that can be a vast collection. Smiling at a morose looking individual in the market, waving at a neighbor, writing a note to a friend or making a phone call to someone you know who needs a chat as much as you do can all be a blessing that flows in two directions. This is one of the reasons I like Facebook. It allows me to use my nursing experience in a way I never dreamed possible. It has also introduced me to so many wonderful individuals from all over the world I would never have met any other way.

I joke about changing clean PJ’s for ones I’ve worn all day but it has been known…although I do feel better when I get dressed. Noon is my usual deadline for entering life and leaving sleep behind although I awaken earlier than that. I have always found giving an allotted amount of time for certain chores helps and now that my husband has retired, he is much help however, he is still a man and we must admit, men and women see housework and all of its responsibilities with differing views; however, that is what makes the world go around, so hurrah for that difference. Having that attitude keeps me from being too bitchy but what really helps me is to realize what I have put him through over these past years with doctor visits, trips out of town for specialists, etc. Love is a wonderful emotion and truly does spin the world.

If you, like me, feel trapped by the limitations of your body, let us agree to combat loneliness and thereby banish the depression that is its constant companion.