Exasperation’s Omega Point

In August I wrote my last post.  The months from August to December were exasperating since I had more than one occasion to delight in the unpleasantness of being ill, a condition that has continued on to the present.   My fevers returned without the medical professionals’ understanding why and being stymied about  my return bouts with bronchitis and during this entire time I have worn a sleeve around my knee for support since I hurt it during a slip on a pillow on the floor!!

Finally, I had an MRI, which showed I tore the Meniscus.  I  knew I needed surgery, yet I did not want to take care of it until after Thanksgiving.  I did not want to jeopardize my plans to travel to my sister’s for Thanksgiving.  Now that I am home, I will call on Monday to begin making arrangements.  Even though I will need surgery to repair the rip, I am hesitating to do it.  To many snips, cuts and hospital stays in the last 2 years make me obstinate for something done.  Now, when I think of an invasive procedure I shout out to myself a ridiculous cry:  Enough is Enough!

The knee must be repaired.  It keeps me from doing any work outside.  I do a little, the knee begins to bother me and I stop.  Then there are the trips up and down our stairway.  Each step beckons to me to trip and I try to make sure I don’t, because if I do I know the knee will suffer.  One time I did catch the edge of the step.  By the time I corrected how I stepped forward, my diet coke had landed on the baby grand piano.  Thank God I had the top down,  The coke was on the surface and on the keys.  Mnnnnn, sticky keys took more than a moment to clean!

I hope these months have been better for all of you. Hopefully, I can change from being exasperated and begin to enjoy sun-filled, productive days that bring a smile to my face!

One Little Decision–

When I had a high fever in March and made up my mind to go to the emergency room,  I had no idea how that decision would change my world so drastically.  As I write this post I realize how much everything has been reordered.  The first two months after  my surgery and subsequent healing went well.  I assumed that life would return to me and  the things I did before surgery would return.

Unfortunately, in May when I began ChemoTherapy,  once again I had no idea how  it would negatively affect me and what that meant for me.  Now in September I can easily see that Chemo put an unwanted grip on me, forcing me to bed many days, still affecting me after its completion and realizing that the Avastin I am continuing to take brings with it some of the side affects that already have been with me.

The result of all of this is that I have not been able to do much at all during these many months.  Sitting, or being in bed for days because of the side effects have left me worn, fatter than fat and skeptical of when I can ever be free of the drug side effects so I can start being me again.  I worry also that once they go will the numbness and pain that remains at the surgical area ever go away and each day I feel my breathing will never be the same as it was.  Huffing and puffing at times is standard now, although, it is better than having difficulty breathing for a full day.  Thankfully that doesn’t happen that often.

So I think all of this has made me feel that I am now part of a club, one that doesn’t ask permission to enlist you and one that carries a nasty stigma that many people don’t understand.  Regardless, if I am a survivor I will still be part of this same club, the C Club, the one that enlists you the day your cancer begins.  It is not a pleasant reality.  I bristle at the thought of being part of something that puts me in a group.   I now live in a place and way that today and tomorrow is a question, particularly when I ask myself, “Has this all been worth it!”

Three days more, An Anniversary

Three days from now I will have an anniversary, a one month anniversary since I had a lower-left lung lobectomy.   I am still unsure of what I think or feel about this change in my life.   At times, when my left chest is quiet and not bothering me, it is life like it was and then, depending on a movement I quickly remember, although, when I remember I understand everything, yet it is as if I am under a  veil of  silk that protects me from reality.  The veil guards me from viewers, by not allowing them to easily see the form within.  It is as if I am the form and I am also the viewer of the form.

The form knows everything, has been through every step of life before this surgery, during it and now.   The form prefers the memories  be left as undefined as possible and so, it prefers placing a protective veil over itself so that outside chatter about the present change will not puncture its world.  Part of the problem is that I accept what has happened, without questions that will define the future.  I know that when I am up doing the things that I shouldn’t be doing and that make me exhausted and worn is all part of preferring the veiled existence.

I also am very sensitive that my inner family members are extremely concerned and so I promise to rest, lay down, play games on the computer, yet all I want to do  is do what I did before and how I did it.  The first couple of days in this week were busy.  Some with shopping and appointments and lengths of time where I did as I wished, yet yesterday and today had big doses of penance.  When exhaustion, nervousness and discomfort set in I know that to live under a silk veil is not the way to go.

Three more days and an anniversary certainly are not paramount events.  What is most important is that I accept what has happened, take the time to heal properly and hope that every other anniversary will bring the close of another year that has gone well for me.

I Wonder: Am I There??

My original blog at WordPress, which I still leave intact, focused on a time in one’s life that is considered the twilight of life and how that period can affect you.  When thinking about a name for my blog I chose “Within Crepusculum” which in meaning comes from the ancient word “Crepusculum” for a place or feeling that is no longer clear in vision or thought.  The contemporary equivalent, crepuscular, used mostly as an adjective, carries almost the same meaning, yet with it you identify a particular thing with a noun of choice.

Crepusculum became an actual place to me, where one day, when I have experiences particular life changes that leaves me bound to being assisted to continue living, or less traumatic, a place just beyond a threshold, where I will only pass through when I know my physical or mental condition has changed enough and that I believe I may never be able to recoup from the change.  After entering, this place, within my own crepusculum, I begin a journey of unknown length, nor do I know what I will meet along the path that will lead to the part of life that I am not capable of caring for myself.

A definite age does not mean you enter.  Circumstance does matter.  Mental worry and concerns are paramount.  They will determine if you will move beyond the threshold.

Up until this last year I never experienced any thing that made me feel I could change and not return to how I felt on any of my days.  This year, from the time I turned 64, I began collecting new experiences that signaled a difference in me.  First, my sinus’ became much more bothersome and during this time I started to have fevers.  Rounds of treatment never stopped the fever.  It came and went as it pleased even though the sinus’ were fine.  No other cause could be found for the fever and slowly I began to identify with FUO, (fever of unknown origin) a condition quite difficult to treat.  When the fever came it was always accompanied by my being lethargic and miserable.  So often I sat staring into space.  When the fever went down I returned to reality.  Then one day I realized it was gone for two months.  Then two months more of freedom passed and now they are back.

Next,   I experienced a terrible hernia and while waiting for its repair, the pain began to intensify.  I spent hours lying on the floor to relieve the pain.  It had always worked.  This time it did nothing and finally I gave up and went to the emergency room.  I was surprised to hear that it wasn’t my hernia, but that I had an appendicitis.

Finally, the hernia surgery was scheduled and afterward I was limited in what I could do for over 6 weeks.  Even after that time I often had bouts in discomfort and was told this would go on for six months.

The fever, two operations and recuperation’s left me feeling that to regain my strength and fortitude  would not be easy or at times I felt I could never return to how I was.

Slowly, I found I could do more each day.  Eventually I could function physically as I wanted.  I could return to my large garden and lawn to work it as I used to and inside the house any new project was possible.  I was thankful that I had uselessly worried.

Then, three and a half weeks ago, following a morning of trimming tree branches, I fell by catching my foot in a large branch and tumbled forward with such surprising force, that when I landed with my chest on a brick I looked up to see the cement walkway just inches before me.  Without thinking I got up, started to move the branches, saw the brick lying there on the dirt and continued to clean up the area.  Within a very, very short time some pain began.  Regardless, I put all the garden equipment away, then took a shower followed by pacing around not wanting to accept the pain was getting worse.  Soon, I gave up and thought I had better call my spouse home to take me to the emergency room.  I had fractured two ribs, twisted my hip and had an abundance of soft tissue, muscle damage.

After returning from the hospital, the pain intensified and my ability to move easily deteriorated.  The next three days the pain was gruesome and I became helpless when I tried to get in or out of the bed.  To be helped out of the bed worked, but the pain stabbed me at such a degree that I actually cried out for mercy and soon became paranoid in selecting a way to sit, rest, how to stand and walk that many times I felt the path now taken was one that would never change its downward direction.

It is still difficult for me to move, to find a way to sleep, to have the stamina to keep going because if I do more the pain returns to haunt me.  I realize I will reach a day it leaves, but I question that in the aftermath, will I once again return to my normal strength and fortitude.

Too much, To much for my sixty-fourth year.  In a couple of months I will be sixty-five.  Let medicare come if it must or let the Scooter Store continue to send me brochures and let my sideburns show my only touch of grey at the very bottom, but PLEASE, PLEASE let the happenings I have experienced this past year not continue with new ones when I turn sixty-five.  If they do,  I will not be able to stop questioning if I have crossed my threshold.

During each of these days–

Continually I am asked by the ones that are closest to me, “Are you fine?”  “What is the matter?” “No I don’t think that is the reason, so what is it?”  If I try to answer the first two questions, most likely I receive the third question in response to my answer.

This brings me to a point in my life where I ask a question, “Why is it when I say what is the problem, I am told that my reason is justified and that I don’t understand the situation.  The situation is mine I think and after all this time of living I should hope that I know what my situation is.  But, there is a difference.  When I was young I would never think of telling someone what was bothering me.  Now I do and I think that is the basic problem.  I was an expert at covering up what I was feeling.  Well, how could I tell them when my self esteem was even lower than it is now.  Back then I felt I could never be truthful because I felt that the truth would hurt me more than them.

Now, it feels more important to me to tell the truth.  Yes I suppose I could sugar-coat it a little, but then usually these same people don’t sugar coat much for me.  One is M. who is so troubled with the way that I am, particularly in my reaction to acquaintances and friends, as well as himself.  Well, as two examples of his worry,  one friend has used up all the care and help that I have for her.  I have helped and helped and been there, and been there for her and what have I gotten in return is a plea for more help.  I just don’t have more to give since now I feel I must take care of me and so I stay away as quietly and politely as I can.  Another is a new acquaintance, who I thought might become a good friend.  When I realized that the “the sale–the job–the inevitable bit of money made” was more important than understanding what I wanted and dealing with it.  Yes I was the client, but it didn’t seem to matter much.  I was quickly told that I should understand that what I wanted to happen, (I had full rights to ask for what I wanted)  went against the grain of the acquaintance.  I understood in a moment that the commission in the sale was the most important.  Well, as I am known to do, the axe fell on this supposed relationship and now I am questioned why I made the decision I did.

I often think that this is the most appropriate time in my life to say what I am, what I want and how I see it.  If I don’t act now on my beliefs what am I going to do during that long journey with in my Crepusculum.  I can just imagine how my care can take quick turns that I don’t believe in.  That fact is catalyst enough for me to know I must grab a hold of my own life and start letting everyone know my wishes.  I just can’t sit in the quiet “corner” any longer.  This is all different to me as it is to the others who question me, but I believe this current life turmoil and questioning must be during my transition  from quiet toad sitting on the side of life, to a new, determination that makes people say, “Guess I can’t run over him any longer!”  Its not easy to change.  If you are  like me then agree  to  take a chance to stake out your independence.  Grab a hold of your wishes and sell them boldly to all you meet.  That little change will make you begin to see that it is possible to journey through Crepusculum with a modicum of respect and enjoyment.

Should I should i s h o u l —

Maybe, two months ago, I should have seen a grief conselor.  I had a premonition that if I didn’t I would feel the ramifications.  I think I was right.  Now, the affects of not doing so is beginning to show.

  • I have a terrible time sleeping.
  • I am not organized.
  • I am a blimp with no control over the binging.
  • I am in Phoenix and wish to be home.
  • Home, the safety of my Library is paramount to me.

Now, I wonder, what do I do.  I am only worried about my eating.  I have absolutely no self-will at this point.  In fact, I feel like I don’t give a damn.  At the same time, I also worry about what this fat midriff is doing to me.  I fear a heart attack.

I may fear a heart attack, but if I should get one then I prefer it to being massive, rather than having it bring me down, have me taken to a hospital and poked at endlessly.  That is torture to me.  I prefer that not be a reality.

Why, I hate hospital’s, I know what they can do and I can’t let that happen to me.  I can’t be there and be poked at looked at.  I was born the wy I am and because I hate the reality it makes me not want to be examined.  To many times I have been and I die a little each time.   I much prefer going to my grave without such untruthful poking!

Am I depressed.  It’s hard to say because usually I feel much differently when I am depressed.  Now I feel only to be in a la la land.  Thats it i just float through the environments and discussions I have.  Can’t seem to settle down and focus on what is beeing said.

I have to think all this out!

Que Sera, Sera

dwelling-on-five-thoughtpic.jpg
Dwelling On Five Thoughts
18″x15″x6″ Dyed Nylon

 

When I was about seven or eight years old, strangely, I developed a kidney infection. Our family doctor told me that little boys usually do not have kidney infections. He continued telling me to be very good and not run around and make sure I did not argue about taking my pills. Shortly afterward, we left the doctor’s office. My father and I walked to the car and then we stopped at the drugstore to get my pills. I think this was the first time the doctor did not give me pills, but rather wrote a prescription for the medication.

My father parked the car and told me to remain in the car while he got my prescription. The time alone provided a small window for me to daydream. I felt miserable and I had a fever. My head pounded each time I moved or stood. I bent my head making me nearly huddled with my hands wrapped around my waist. I felt very frightened sitting all alone because I worried why I had a prescription. I felt like I was always sick and this was one of the worst times. All I wanted to do was to get home to my mother. She would make everything be better, particularly me!

I have never forgotten, even though my Mother never left my side after I got home. She figured out why I was so upset and took great patience and love to assure me everything was fine. The memory was still there when I was 16 and then again, at 27 when once again I had a kidney infection. I was sure the doctor meant I was going to die of kidney failure–worry #1 became fully developed.

Even after worry #1 was established, I received a magazine from a support group for people that had a colostomy or ileostomy or both in the early seventies. At first, I was confounded why should I receive the magazine and decided it was a mistake. Over the next few days, I glanced through the magazine and started reading all the articles. I had no idea what the necessary products were for and the book did not explain them. There was a story about a person who had both and was a gymnast. The story fascinated me and I decided I wanted to find out more, even though I was aware that since I was about twelve the superintendent’s wife of the community school I attended had a colostomy The more I read, the more I thought of Mrs. Boyle and the picture I kept seeing was of her emptying the device.

The picture of her began to haunt me, as well as, some of the articles I had been reading and in the end, there was a picture of Mrs. Boyle layered over a picture of a woman with an ilieostomy on a trapeze. Quickly that picture produced another tag of worry in my life. Worry #2 allowed me to have many sleepless nights preparing for the worst.

By the end of the next fifteen years, I felt my affectation had greatly dissipated. My two worries did not affect me nor did I think of them. Life presented itself as it should and I had not a worry in all those years. I never thought about how my health could deteriorate and cause me problems within my Crepusculum and easily define my journey to the entrance of my darkest hours. I had a busy life and it was difficult for me to be any thing other than happy.

Even though I was happy, the additional years allowed me to think and worry more. My parents were aging and after I entered my forties their problems became more poignant. While visiting with us, for a long a long weekend, my father experienced his first heart attack. Upon his discharge, he drove back home, mostly as a show of strength and no physical signs of a heart attack showed. Very early in the morning, on a Monday in February, I received a call from my mother that my father was having severe chest pains. By the time I arrived, he was prepped for quadruple by-pass surgery. At the close of the day, I had developed a single picture: My father in the Intensive Care Unit attached to drains, the incision area uncovered and still surrounded with sponges and endless monitors above his head.

At my mother’s home that night, sleep did not come until the wee hours of the morning. Worry #3 formed.

It formed and dominated my mind for a while. By now I had realized I shouldn’t focus on a particular worry. I needed to remember that when I walk out of the house and am hit by a car, is more realistic than if I fabricate an illogical worry.

A short time later, my Mother needed surgery for a colon resection. Following surgery, at a new gastroenteroogist, I was repeatedly told me I must have a colonoscopy as soon as possible because he was sure I would follow in Mother’s shoes He continued enforcing his point by telling me repeatedly that polyps predate cancer and that if my Mother had polyps then he was sure I would! By the time, we left Worry #4 was firmly entrenched and I vowed my Mother would never see that physician again!

For the next seven years, the thought of surgery on my colon plagued me. Finally, I forced myself into having it all checked out and, of course, everything was very GOOD.  I placed Worry #4 on a shelf for the next five years, or until I needed my next exam. I was ecstatic.

While I was being plagued by the worry of one day having colon surgery, my mother had a stroke. As I cared for her, in the months to follow, repeatedly I asked if this could happen to me. I realized that the outcome of a stroke depends upon the size of the clot or the dimensions of the bleed area, thus meaning that if I had a stroke the result could not be of the same as my mother’s. Regardless, I began carrying around a sullen mask, until one day I noticed a worry # 5 was perched on my shoulder next to worry #4.

One day as I was whistling “Que Sera, Que Sera” I suddenly stopped and began singing:

 

Que, Sera, Sera

Whatever will be, will be

The Future’s not ours to see,

Que, Sera, Sera

What will be, will be–

In one short verse, I realized how ridiculous it is to carry around my worries like an albatross around my neck. I have no way of telling, nor does a doctor, what will happen to me in the future. To worry only causes me to have less time to enjoy the life I have. I shelved my worries in a small corner of my mind. I keep them there as a reminder that when I look forward I will look without the influence of worry, but rather I will look openly and understand that even within  my Crepusculum  it isn’t necessary to know every thing!


The five worries were the inspiration for “Dwelling on
Five Thoughts”. Each form represents a specific worry and has a small sculpture inside depicting the worry. When the piece is exhibited the forms are illuminated from the bottom so the viewer might catch a glimpse of the sculpture.