ABANDONMENT, ANGER AND AN ANGEL

We were in Bandon, Oregon on vacation.  Classes at Eastern Oregon University would start in a week.  My husband, Jay, was a geology professor at EOU, and this was our last chance to get away before the new school year began.  I hadn’t felt well for most of the year.  Extreme fatigue seemed to be my biggest problem, but there was also the vague sense of a floating discomfort.  Deep down I knew something else was going on inside my body; something was attacking my body.  I was scared.  It became necessary for me to close down my ten year old photography business in which I did mostly senior portraits and weddings, because I simply didn’t have the energy needed to keep working.  At this time the one thing I was thankful for was my husband’s approving of closing down the business.  

I’ve always been an energetic person.  Persistent.  Obsessive.  Organized.  And busy.  I kept a clean and organized home.  The first sign of deteriorating health was probably evident by looking at our home, which began to accumulate dirty dishes, dirty laundry and much general disorganization.  Before things got too bad my husband took over the care of our home.  Eventually the only thing I did around the house was the laundry.  All of this was so unlike me, but I didn’t have the energy to even care anymore.  What was going on with my body?  I didn’t have a clue and neither did my primary care physician.  Perhaps it had something to do with peri-menopause I told myself.  Perhaps this is just a rough patch which I have to go through, and just a natural part of heading into my 50’s.  I was 48 years old.

 While in Bandon we heard about the attack on the Twin Towers in New York City on the car radio.  We knew something was wrong when we noticed the American flag flying everywhere we drove on the coast that morning.  By the next evening I wasn’t feeling well.  My jaw started throbbing, and I told my husband I needed to see a doctor.  Jay didn’t believe I had a problem needing medical attention, and he went to bed that night in the motel perturbed with me.  

I pored a hot bath and sank into it.  I was scared because Jay was shutting down emotionally from me.  And it was directly related to my illusive physical problems.  He didn’t want to deal with yet another complaint.  The last months I’d had one excuse after another for not doing things with him.  I slept a good deal of the time.  Here we were on vacation, and it was just too much for him I guessed.  Now he was abandoning me in sleep when I needed help.  The pain in my jaw increased as I began to have difficulty opening my mouth.  I was alone in this moment.  Tears fell as I realized Jay wasn’t going to take care of me.  I seldom cried, and I hated crying now.    I realized I had to take care of myself, and drive to the hospital emergency room alone.  

I slipped out of the hotel and drove the hour to the closest coastal hospital.  The physician diagnosed an infection developing in a plugged salivary gland.  He sent me out with antibiotics and pain killers, and with instructions to see my physician as soon as we got home to La Grande, Oregon the next day.

I had an “I told you so” conversation with my husband the following morning, and he apologized for not listening to me.  By the time we arrived back to La Grande I was in excruciating pain, and had a high fever.  The doctor sent me straight over to our town’s one hospital where I spent the next three days on IV antibiotics for the severe and complex infection which attacked my salivary glands.  My salivary glands had been giving me trouble since 1991.  Ten years!  Neither I nor my doctor made any connection with my salivary gland troubles, and the increasing fatigue I was experiencing.  With hindsight being 20/20 we now know these were the first signs of an auto-immune disorder called Sjogren’s.  The symptoms were dry mouth which resulted in the lack of proper salivary gland function, and fatigue.  Dry eyes would soon follow that.  

The remainder of 2001, and into the fall of 2002 the fatigue grew worse, and I began to sleep my life away.  It wasn’t unusual to spend 16 hours, and sometimes more a day sleeping.  When awake I was listless and miserable.  Jay became less and less tolerant of my excuses for not wanting to do anything with him.  In particular, we were house hunting at this time and I didn't have much energy for such a task.  His reaction to my vague symptoms didn’t surprise me.  More then once he had told me the story of his elderly grandmother who, when feeling neglected by the family, would admit herself to the hospital in order to get attention.  After a few days she would come home “better”.  She did this numerous times.  I knew Jay was comparing me with this grandparent even though he never said so out loud.  Nothing I could say would make Jay change his mind because my physician didn’t even know what was wrong me.  It all looked suspiciously like my husband might be right to everyone but me.  Things got so bad between us that summer I left him for a week with a note on the table explaining I wouldn’t be coming back unless he agreed to joint couple’s counseling.  I was frustrated that he continued to minimize my health issues, and this is what I wanted to discuss with a third party.  A week passed, and Jay agreed to see a therapist.  I came back home, and made an appointment with a therapist for the middle of September in 2002. 

Before our appointment I began having difficulty catching my breath.  The least exertion sent me to a chair.  In the middle of the month we met my oldest daughter and her husband at Disneyland for a few days.  I required a wheelchair because of breathing  difficulties.  Jay insisted I walk the one flight of stairs to our second floor hotel room at Disneyland until he could arrange for a wheelchair.  I ended up collapsing in breathlessness and fatigue when we got to our room.  The rest of the trip I refused to walk on my own.  I became increasingly panicked about my inability to get a deep breath.  As soon as we arrived home Jay agreed to drive me to the emergency room.  A couple hours later a technician drew a half gallon of fluid from my right lung by inserting a large bore needle into my lung through my back.  I was finally able to breath freely.  What a relief it was.  And my husband once again apologized for minimizing my physical complaints.  But his minimizing continued.

During the months of November and December I was hospitalized two times for vague complaints.  My primary care physician began to take my complaints seriously, and started running many tests.  Jay however continued minimizing my problems, not so much with words but by his inattention and lack of concern.  He didn’t want to hear or talk about what was happening with me.  And I didn’t have any proof that something was very wrong with me physically.
  

While in this rundown state I contracted a nasty gastrointestinal flue which I was defenseless to fight.  One night, unable to leave the bathroom, I began calling out to Jay, begging him to take me to the hospital.  In bed he continued to sleep as if he didn’t hear me.  I crawled down the stairs, not bothering to change out of my pajamas, struggled to the car, and drove myself to the hospital.  I was placed in intensive care.  A heart scan was performed along with other tests.  Nothing!  At least that’s what the technician who performed the scan told us.  Jay arrived in time to watch the screen as the images of my beating heart played.  Fascinating!   I couldn’t take my eyes off the screen.  Something looked odd.  I asked, “What’s that?”  The technician’s response was, “Oh, that’s nothing.  It’s just fluid around your heart.  Perfectly normal.  The fluid will eventually be reabsorbed by the body.”  This couldn’t have been farther from the truth, but at that moment neither Jay nor I had any idea this accumulating fluid would threaten to take my life in just a few weeks. 

Once more I was sent home with no answers, and a lot of questions.  At Christmas I found myself back in intensive care, because my organs were failing.  Jay drove me to the hospital this time, but he was confused and at a complete loss.  He wasn’t the only one.  My primary care physician became so frustrated she decided to send all my medical records, and test results to an internist at a teaching hospital in Portland; Oregon Health Sciences University.  The internist promptly requested I be airlifted immediately to OHSU because he was fairly certain I had less then 48 hours to live if his suspicions of what I had were correct.  I was flown that night in a winter storm to Portland while my husband drove the 280 miles as fast as he could to be there with me.  

A diagnosis of idiopathic pericarditis was confirmed.  In layman’s terms, my heart was failing because the lining around it, the pericardium, was inflamed.   A thick viscus fluid under the pericardium squeezed the heart so it couldn’t circulate blood properly.  If I had been put on steroids when the fluid was first discovered surgery would probably have been avoided.  Now this was a life and death situation which required immediate surgery.  Medicated on narcotics I had no idea what any of this meant.  I signed the papers agreeing to surgery because it seemed simple enough.  I thought they would just put a needle into the pericardium surrounding my heart, and draw out the excess fluid; similar to the fluid in my lungs.  No big deal.  I called each of my three adult children to explain my imminent heart surgery, and explained that it was a simple procedure, and not to worry.  Within the hour I was wheeled into the surgical suite.  I couldn’t have been more misguided about this being a simple procedure.

When I awoke I learned my sternum was sawed in half, a heart-lung machine was connected to my body to keep it supplied with oxygenated blood while my heart was removed from the chest.  That is the only way the cardiologist could remove the inflamed pericardium which surrounded the organ.  Jay had been told it was a three hour surgery so his anxiety level rose dramatically when four hours passed before he was allowed to see me.  The cardiologist explained to Jay he’d never seen a patient with such an inflamed pericardium.  The pericardium had separated into three layers by thick fluid, so each layer had to be removed individually from around the heart.  That ‘s what took the extra time.  

Four hours later I was back in recovery with tubes coming out of my body everywhere.  I had been intubated, but I fought so hard to pull it out that in ICU that they had to take that tube out or risk me detaching other more important tubes.  My parents had come to see me, but my mother panicked  when she saw me.   My dad immediately took her out of the recovery room.

I spent the first 24 hours after surgery in CCU (Coronary Care Unit).  I have one clear memory during those hours in spite of being kept pretty much “out of it” with medications.  I awoke in a panic late that night.  The male nurse watching me was actually a vampire.  He was collecting my blood in plastic zippered pillow cases in order to take them out of the hospital in the morning.  This was so real that in my terror I called my daughter, Melody, back in La Grande and told her what was happening.  She in turn called Jay, and told him to get back up to the hospital because I was hallucinating, and was terrified.  Jay had just gotten to his hotel room, but he headed right back up to calm me down.  The next day I asked to be removed from whatever medication had been administered to help me sleep.  I assumed that was the culprit which caused the hallucination which seemed so real.  

  

It took about 24 hours before I was clear-headed enough to realize what had happened to me during the four hour surgery.  How can I describe that kind of pain?  It’s pain that takes your breath away, but you have to breath anyway.  Each breath is an agonizing reminder that I was sawed in half.  Coughing is excruciating, as is breathing deeply.  With each movement pain stabbed me in the very center of my being.  When I saw the dozen or so large, dark black sutures garishly marking the center of my chest I began to understand that directly underneath the sliced skin my bony sternum was held together with wire sutures which would remain the remainder of my life unlike the nylon sutures on the outside.  Besides pain meds, the other comfort was holding a pillow gently against my chest when I moved.  I felt as though that’s the only thing that kept my heart inside my chest when I changed positions.  I didn’t feel so silly about this when a nurse presented me with a red heart-shaped pillow,  an anatomical heart printed on one side and OHSU on the other, to hold against my chest the day I was discharged.  Evidently, most open heart patients experience the illogical fear that something might fall out.

Besides excruciating pain I felt anger.  A raging, full bodied emotion propelled by the fact I’d been physically violated.  Terribly violated.  Without my permission or consent.  Yes, I signed a paper agreeing to the surgery, but I had no idea what was about to happen to me.  Yes, my life was saved, but at a huge cost, both figuratively and literally.  I was told it might take a year for me to recover fully; a year of pain as my companion.  

But there was a second reason for my rage.  During the previous year my husband punished me emotionally for what appeared to be an overactive imagination which created ever increasing health problems.  As I look back who wants their mate to have a serious health crisis especially in light of almost no scientific evidence?  Jay simply didn’t want to believe it.  I didn’t want to believe it either, but my body was sending me the ugly message that I was very sick, and getting worse.  Until finally, whatever it was attacked my heart.  

“Whatever it was” turned out to be a diagnosis of Sjogrens Auto-Immune Disorder.  Sjogren’s is a chronic autoimmune disease in which the white blood cells attack moisture-producing glands.  Although the hallmark symptoms are dry eyes and dry mouth, Sjogren’s may also cause dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system.  Patients may also experience extreme fatigue and joint pain.  Sjogren’s affects the entire body.  Symptoms may remain steady, worsen, or, uncommonly, go into remission.  While some experience mild discomfort, others suffer debilitating symptoms that greatly impair their functioning; such as in my case.  Since symptoms of Sjogren’s mimic other conditions and diseases, Sjogren’s can often be overlooked or misdiagnosed.  On average, it takes nearly seven years to receive a diagnosis of Sjorgren’s.  For me it had taken ten years!

From Sjogren’s Syndrome Foundation.

http://www.sjogrens.org/home/about-sjogrens-syndrome/symptoms

Before I left the hospital I had my diagnosis, but it didn’t relieve the anger I felt toward Jay for not believing I was really that sick during the previous months.

Between pain, and anger, and feelings of violation I became intent on making Jay, my husband of eleven years, suffer during my ten day stay in the hospital.  In my eyes Jay could do nothing right, or say anything right.  I became demanding and difficult with him.  I would order him to get me a hot dog or some other thing I felt like eating or drinking, and he would immediately head out to find the item.  When he returned with it I didn’t thank him.  He owed me!  When asked a question by a nurse, or doctor Jay tried to help me answer, but I told him to shut up.  I silenced him.  I was not nice about it, or kind, or patient.  And I didn’t even try because he deserved whatever I dished out.  I was suffering, and so would he.  I’d never been filled with such vitriol, or experienced this side of my personality.  It unsettled me.  I was downright ugly.   But I continued bullying my contrite husband in spite of his obvious desire to comply gladly no matter how I behaved.  Each time a barrage of anger let loose he remained quiet.  He never defended himself, or walked away to protect himself from my attacks.  Jay looked so sad, and dejected as if being punished for good reason.  

Many nurses took care of me through those difficult first ten days of recovery, but one in particular was an angel.  Literally perhaps.  She was Japanese with a small frame.  But it’s her voice I remember most.  After observing one of my vicious verbal attacks focused on my husband this lovely woman in white bent slowly down to whisper in my ear, “Your husband loves you very much.  He wants to help you.  Be nice to him.”  Caught completely off guard by her soft voice I found my anger soften.    A couple hours later after another outburst she bent down to whisper again, “Your husband loves you.  He cares about you.  Let him help you.”  Whenever I heard that voice it seemed as if an angel whispered to me, and my anger weakened.  The morning of my discharge this nurse got me ready.  Her last action as I sat in the wheelchair was to whisper in my ear one more time, “Your husband loves you very much.  Be kind to him.”  And I heard one more thing although the actual words weren’t spoken.  “Forgive him.”

“Forgive him.”  It wasn’t a suggestion.  It wasn’t a nice thought.  It was a command; a command from heaven above.  Two words communicated firmly, but with such love that I couldn’t argue.  I wouldn’t argue.  I looked one more time at this soft spoken nurse who addressed me as no human ever had; with God-like authority and generosity.  There was no hint of passing condemnation or shame.  This creature simply stated the facts in the most gentle way, and with palpable love.  “Your husband loves you very much.  Forgive him.”  When I left the hospital that day I left my anger as well.  I didn’t need it anymore.  I offered my husband forgiveness.

Jay was a changed man!  He waited on me hand and foot,  fixing all the meals, cleaning the house, showering me with flowers and romantic greeting cards.  He brought me lunch in bed when I didn't want to leave the bedroom, which was daily for months.  He purchased us a beautiful new bed just before I came home.  Before the surgery if I accidentally touched Jay while sleeping he would jump involuntarily, and scoot farther away from me.  Now he wanted to be touching me while we slept, even if it was just my foot or hand.  His devotion was undeniable!  All this positive attention helped me through a very difficult year of healing.      

During the next year all my focus would need to be on recovery.