No Way Outa Here – 11

I wonder if there is such a thing as returning to a “normal” life.  What is a normal life?  All I can say is, life hasn’t been the same since the day that disaster struck.  But then again, what is disaster? Disaster is things that go differently than according to our plans, and when these times hit, we incur loss.  We suffer.  I suffered more, and incurred more loss than had even before, when Peter first had his stroke.

On December 29, my beloved sister Laurie died.  I got a phone call that morning when I was in the shower.  One of my sisters was trying to call me.  I had to call her back after drying off.  I was devastated to hear the news.  I hadn’t spoken to Laurie yet during the holidays, and I was always concerned about her, who lived a very solitary life.  She died of natural causes, the coroner said.  But we don’t know what caused her death, only that she couldn’t catch her breath and called 911.  By the time they arrived, seven minutes  later, she was already gone.  All of us remaining six siblings flew from our respective homes to Minnesota to plan a funeral and to pay Laurie our last respects.

I returned two weeks later, sad and exhausted, only to find that more disaster had struck.  The nursing agency that administered Peter’s meds had failed to give him two of his epilepsy medications the entire two weeks I was gone.  Peter regressed into seizures several times a day, and the rest of the time, apathy and sleep.  He wasn’t talking anymore, and was rarely conscious.  All that work, all the progress over the past year of Peter’s being home, gone down the drain in a matter of two weeks!

Slowly, and excruciatingly gradually, the neurologist increased Peter’s meds.  Now he is getting a new medication and is almost back to the previous levels of another.  It has taken five months, but the seizures seem to have stopped almost completely.  But maybe it is from the new medication, or maybe the damage from all those seizures, but Peter hardly talks anymore.  When he says something, it is hardly ever an audible voice anymore, just the slightest whisper.  It is as though his lungs no longer have the capacity to even whisper, most of the time.  He is normally not mentally present, and in that state, swallows worse than ever.  We experience fits of desperate coughing, Peter’s face red as a tomato as he struggles to extricate all the food and saliva that has started to trickle down his windpipe.  We can go through a box of Kleenex in a day, trying to clean up all the saliva that dribbles down his shirt or explodes into a Kleenex, if we’re lucky, and it doesn’t spatter onto the furniture.  He can hardly walk from one room to the next.  He only rarely reads the newspaper, and falls asleep while watching television, or falls into a trance.   He hardly ever smiles.  All his previous spark, his enthusiasm, is gone.  Most of the time, he is a crippled zombie.  All of this is very sad to watch.  This, I tell myself, is what tragedy feels like.

How do I deal with this?  Well, I would say, if there is a place called hell, a place of constant torment, that is where I spent January until May.  My concept of what or who God is was thrown up like a crystal Christmas ornament, and came crashing down, broken into smithereens.  I had thought God was the one who answered our prayers.  God was supposed to be our healer.  Our comforter.  Our peace.  All of my prayers had been for naught, it seemed.  I saw a mind disintegrated, not healing.  I was constantly distraught, and my sleep was restless.

I went in May to the people I always go to for spiritual help, to Rapha, in England, to a workshop on “unfailing peace”.  Just the thing I didn’t have.  I can’t say exactly what happened while I was there.  I did hear some things that have helped.  One was that I have believed a lie all my life.  It is now time for me to know the truth, this person said.  The truth that would set me free.

I know now my concept of God was wrong, or only partially true.  I have been looking Suffering in the face, allowing this unwelcome presence to speak to me.  This is where I am finding my comfort, my liberation.

One thought that has sustained me in these past months is the idea that anything that I call good has a pool it originates from.  A pool of goodness which contains all the goodness there is.  A pool of beauty is the source of all beauty.  Even in the bleak winter months, I held onto the concept of Ur-Goodness, Ur-beauty.  It didn’t alleviate my misery, but it was something to hold onto when I experienced nothing otherwise of what I would call God.

After returning from this workshop, I looked at my view of God.  My habitual view was of a Being who withheld, who was grudging with gifts, grumpy and who for some reason disapproved of me.  I saw God as unfair and unfeeling, someone who didn’t care about my suffering.  I could see where this view came from –  from the god of my upbringing.  So I renounced that view again, and said I was sorry to a God I could not see or feel.  And I looked more at Suffering, reading the book of Job again.

Here, I found a man who, like me, had expected God to be someone who would reward him for his efforts to do everything right.  I’m conscientious.  I’m honest.  I try to do the right thing all the time.  So why should I have to suffer?  There is a mathematical equation here.  Honesty + hard work + fairness should equal well-being, material comfort and security, I thought.  Success.  But it seems that honesty + hard work + fairness equals – perhaps – a smoother life for oneself and others than otherwise, but not comfort or security.  Success?  It depends upon what success is.   If success is material comfort and the absence of suffering, the equation doesn’t add up.  Somehow, in Job’s struggle, he finally saw who God really is.  He saw the majesty, the power of God, and his own utter ignorance and powerlessness.  He was left speechless.  In the end, all he could say was, “Surely I spoke of things I did not understand, things too wonderful for me to know.”

And that is where I was, with the awareness that I had actually no idea who God is or what God’s purposes are with Peter or with me.  I let my anguish and anger at God fall into God’s lap.  I said, “I don’t understand this.  I don’t like it either.  But I’m letting you know this.  And I want you to be my friend, God.”

Since then I have felt at peace again, even when I am sad.  I know I am living in love, and have been loving Peter all along, in all of this. What more can I do?  What greater gift could I give?  And where is the pool that love comes from?  From Love.  God is the pool of love.  I have been living in God all this time, even in my anguish.

Now my view of God has to include Suffering.  Without allowing Suffering to be part of your life, there is no end to suffering.  The only way out is through.  And the only way through is to wade in it, sometimes be stuck in it, even to drown in it.  We can’t lift ourselves out of Suffering.  And Suffering belongs to life just as much as comfort and well-being.  Suffering, the thing we all run away from, is one of life’s greatest teachers.

I continue to suffer, probably more than Peter. In his semi-lucid moments he tells me he is content.  Yesterday I took him out for ice cream at an Italian ice cream café.  He ate it greedily, smearing ice cream over his shorts, his mouth, and the napkins I had spread over his shirt.  He ended up coughing half of the strawberries and ice cream up, having a fit in the restaurant that lasted over fifteen minutes.  I had wanted to take him on a walk along the Rhine River afterwards.  But he was so spent from his coughing fit I took him home after a few minutes.  He fell sound asleep in his wheelchair long before we got home.  Was it a mistake to give him ice cream and strawberries?  He could die if it goes down his windpipe.  But a year after a dire warning from the speech diagnostician, that I must not give him solid food, he is still with us.  Peter’s eagerness to eat this ice cream shows me he still wants the pleasure of food, even if it should kill him.

This morning, I asked Peter what he wanted to do.  Did he want to read the newspaper?  Or perhaps play a game on his tablet?   Barely able to whisper, he said, “I just want to be with you.”  A few seconds later, “I love you, Reenie.”

All questions disappeared.  Peter had received my love, and that was all that was needed.

 

 

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No Way Outa Here – 10

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Again, it’s been months since I’ve posted, and one of the reasons is, I get overwhelmed by trying to walk the tightrope between fiction and reality. In this blog, everything I have written is true, except for the names. Keeping the names straight is difficult, because none of the people I’ve written about have the names I’ve assigned to them here. I see that in my last posting, I even got it mixed up once, calling Michael by his real name, or the name he wants me to call him, Peter.

I gave Peter and those close to him fictitious names because I wanted to protect them in case he our story ever became famous. But then, I figure, even if he or I did become famous, readers would easily find out our true identity. So why not keep it simple and go for the absolute truth?

So, here are the true names of the major players.
Michael = Peter, whose name in German is Klaus-Peter
Chris= Jon, whose full name in German is Johannes
I= Noreen Caregiver=

Maciek (pronounced MAH-chick)

*

Again, months later.  It is very difficult to find time to write this blog, but I believe it is important, so here we go again.

Peter was doing amazingly well in the months after he returned home.  People had been telling me prior to his return that this would be a mistake, that there would be no time for myself, that I would become a martyr, that I could even become sicker than the patient.  But that didn’t happen!  To the contrary, his condition improved, and I enjoyed finding things to do that were good for both of us, because I was determined NOT to become a martyr.

Through months of therapy, Peter began taking a few steps independently, and also to use his voice.  We went to get Peter’s passport and identity card renewed, and Peter signed the documents himself!  He was eating more and more and in such large quantities that we reduced the tube feedings to one a day.  We went away on several outings.   One of my nieces came here from America for a visit, and we went on an all-day outing in June –  Peter, Sarah and Maciek, Peter’s caregiver.  We went on a boat trip on the Rhine River, returning in the evening.  Peter didn’t say much, but Maciek was deeply impressed by the beauty that is to be found in Germany.  As a live-in caregiver, he hasn’t had much opportunity to discover the land he is now living in.  We all had great pleasure that day, enjoying looking up into the beautiful blue sky, being warmed by a relatively rare hot sun, calmed and cradled by the steady quiet rumble of the boat.  Sarah loved being on the Rhine for the second time in her life.  I loved not having to do anything for a few hours, and also seeing all the people around me happy and content.  Peter’s stony, Parkinson- and stroke-smoothed face didn’t show much emotion, but his hands, sometimes jerking in spasms, revealed that his soul was stirred by the specialness of the day.  Days like this made me happy.

But days at home, doing simple things like preparing a meal with Peter and seeing how more he quickly was slicing cucumbers than in the beginning months of his time at home, made me happy too.  It made me happy to see him riding our exercise bike on the terrace, while I dead-headed geraniums.  I enjoyed making videos of his progress and sending them to family and friends.  These things sweetened my days.  I felt purpose in my life and the sense of God’s smile over everything we did.  I did activities on my own too, meeting with friends, singing in a choir, leading a small international home group in our church.  I went to the gym, secure in the fact that Peter was in Maciek’s competent hands.  I even went away for three weeks to England and Ireland with Sarah.  In November I went away again for a few days to visit friends in Italy.  Life was full and rewarding.  When Peter’s GP came for house visits, she was amazed to find Peter reading the newspaper, or writing something in German as an activity for speech therapy.  She marveled at how smoothly our household ran and at how contented I looked.

Peter started to attend church with me on a fairly regular basis, joining right in with the singing, smiling after the service as people walked up to him and greeted him after the service.  Maciek came along several times because he liked being in our church and the way we worship God.

You might ask how I could be happy in this situation.  There was, after all, no way out, and Peter’s mental condition was greatly diminished.  That’s what I thought, right after his stroke.  How could I ever be happy again?  But it was possible.  One of my friends often told me she had never seen me so content.

I think the main reason I was was that Peter’s emotional state was more peaceful than it had ever been before.  Every time I asked Peter how he was, he would say, “Fine.  I’m truly content with my life.”  Sometimes he would say, “I have absolutely nothing to complain about.”  Or:  “I feel at peace with my life.”  How different from the statements I used to hear from him:  “My life is a wreck.”  “I won’t make it to sixty.”  “You’ll soon be a merry widow!” said in a cheery voice, seemingly to torment me all the more.  Before Peter’s stroke, he had become increasingly irascible and negative about his life.  He didn’t trust me enough to share any of his interior life with me.  I knew he was struggling with issues from his past, but he wouldn’t share them with me, instead pushing his projection of me into my face with fake cheeriness, like “You’re doing so well!”  “My wife is perfect.”   They sounded like messages of anger and resentment.  He had other health issues as well.  His abuse of alcohol before his rehab was always a sword hanging over me.  Would he relapse?  He was just as unhappy after rehab as before.

Now, in a state of mental and physical incapacity, Peter was the most pleasant person I knew to be around, always pleasant and courteous.  Therapists and home health aides would comment on what a lovely man Peter was.  He did his therapy cheerfully, and he was grateful for all the little things we did for him.  He ate his meals with gusto.  I enjoyed doing all the activities I chose for us to do together because Peter did them so cheerfully.  We played Uno and other games.  We played catch with a balloon.  We went on outings, sometimes just the two of us, in the car.  We watched TV and listened to audio books together.  He would kiss me often and mouth out “Reenie”, sometimes lifting his hands in his old gesture of exuberance.  I enjoyed the mini-conversations he had with me when he was mentally more alert.  All in all, Peter was making progress, and I rejoiced with him, as did Maciek.

I was proud of the man my husband had become.  I was proud of his determination to make progress and his patient, steady work during and between therapy.  The therapists marveled at his progress.  He had become a man I could respect with all my heart.  He was the same man on the inside as on the outside.

There was another thing that strengthened me enough to give me contentment – my Al-Anon meetings.  I no longer had an active alcoholic in my life, but a new problem just as overwhelming – the aftermath of a devastating stroke, and seeing the wasteland it left my husband and our life in, after it washed away.  The aftermath of such a stroke leaves a mass of destruction, every bit as overwhelming and disheartening as the aftermath of a tornado, which I have also witnessed.  Facing the aftermath, life feels unmanageable.  So I go to these meetings.  Every week we read an opening statement, and a sentence from this speaks very powerfully to me:  “We discover that no situation is really hopeless and that it is possible for us to find contentment and even happiness, whether the alcoholic is still drinking or not.”   Reading that every week, or whenever I find the time to attend, I find hope, and from this hope comes the strength to find and live in this space of contentment.  I find myself saying this to myself over and over again, and believing that this is possible for me.

The main thing that still bothered me was how often Peter spaced out into a dream-like state, a trance, or even sleep, and his tics.   He often slept hours during the day and was awake at night, rattling and shaking his bed at night, keeping me awake.  Annoying wax clogged my ears from the ear plugs I wore to silence Peter’s nocturnal noise, necessitating a couple of visits to the doctor.  I had so many sleepless nights, I started sleeping in the living room, and then decided we’d have to move Peter into the study.

Peter and I spent many hours in the study, sorting through books, with Peter making the decision of which books to keep and which to give up.  He often woke up from his sleepy trances by sorting books, and would stay awake and alert for the rest of the day.  Sometimes he would stop the work and read one of his books.  It took weeks to move enough books to make a bedroom out of the study.   At first, Peter didn’t like the idea of sleeping in a different room from me, being forced to sleep in a room that was formerly  his study.  After a couple of nights, however, he said to me that it was nice sleeping near his books.  I was relieved, satisfied to finally have a lovely room of my own, a space to relax in that was mine alone, not to be shared.  Less and less of the martyr.  Perhaps I could even find myself seeing my life as one of fulfillment, as my friend saw me.

The neurologist acknowledged my complaints of Peter’s sleepiness, which I attributed to an over-dosage of levetiracetam, one of his epilepsy medications.  I attributed the tics and Peter’s disorientation (he still believed his mother was alive, for instance) to the huge amount of medications he had to take.  The neurologist agreed to start lowering the dosage, while starting him on a new medication.  He was to begin this new plan on January 1 of this year.

Christmas was wonderful.  Peter was soon going to get a chance to wake up and become more normal.  Our son Jon came home for Christmas.  We went to the Christmas market, ate out in a restaurant, and enjoyed great meals with Peter and the substitute caregiver, while Maciek was away in Poland.

A few days after Christmas, Jon went back to Korea, where he lives with his Korean wife, and then disaster struck.

 

 

No Way Outa Here -9

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A year has passed since I posted my last blog entry.  And over two years since the time I was writing about.  A lot has happened since then, and much of what has happened I can only call miraculous.

There is a group of Christians in our city that offers prayer for healing in any respect where healing is needed – emotional, spiritual, relational, and/or physical.  I had been hesitating for months about asking them to come and pray for Michael.  He knew about and was very fond of this group before suffering his stroke, so I knew he’d have no compunctions about inviting them, but they showed certain theological tendencies about healing and God’s will in healing that I couldn’t go along with.  So I hovered for a couple of months – shall I call them or not?  In the end, I decided that beggars couldn’t afford to be choosers, and that I was a beggar in need of more divine intervention than I was seeing.  I called the leader of the group, whose telephone number had been given to me.  We made an appointment for her to visit Michael with a couple of other people from her team.

As soon as I saw them, I was reassured.  They were all nice, gentle people of retirement age, donating their time to pray for my husband, who just couldn’t seem to wake up out of this coma-like state!  They laid hands over Michael and we all prayed.

I think God hides the very things that God does, so that there is no proof that whatever has happened is from God or mere coincidence.  So it was here.  Michael was starting to improve on the day before the healing prayers.  But ever since the prayers, he started to improve in leaps and bounds.  I wrote in an email to friends and family, “Who knows?  Maybe Michael will one day be able to eat, talk and walk again!”

Ever so gradually, that is what has happened.

At first, after a three-month stay in the rehab hospital, Peter was transferred to a group home for tracheostoma patients.  It was a friendly, kind setting with room for only seven patients.  He had his own room which I furnished for him with some of our things and some new things I purchased.  Here the therapies continued.  Michael gradually began to be able to stand again, to eat things like bread and pasta, to walk around the home with therapists supporting him on either side, and to make little sounds once in a while with his voice.  I sang songs for him, leaving gaps in the lyrics for him to fill.  He filled the gaps.  He helped with washing himself, smiled at me, answered yes and no to my questions, and began to read the newspaper!  Everyone marveled at his amazing progress.  Was it all the prayers?  Was it the high dosage of fish oil he was suddenly allowed to have each day?  Both?   It was beautiful to behold.

Michael lived in the group home for a year and a half, making nearly steady progress, with some unfortunate hospital visits due to colds and pneumonia.  The only drawback of living in this setting was that living in a group home with other patients, some had multi-resistant germs, which Michael also contracted.

A doctor suggested Michael go back to the rehab hospital he had been in after his stroke, so he went there in September, 2016 spending five months there.  During his time there, he made enough progress so that they could remove his trach.  That very day he began talking to me, albeit usually in only a whisper.  How thrilling it was to carry on mini-conversations with my husband!  I had not had a conversation with him in over two years.  However, with his ability to speak, I began to see other things that have been lost.  For instance, he still believes that his parents, who have been dead for over fifteen years, are alive, or that he is much younger than he is.  But we can talk about things.

I have been learning interesting lessons about things lost and gained, and about things we normally highly prize.  Being able to remember the past in all its detail would be something to strive for, one would think – a stepping stone to more happiness.  But here is something about Michael that confounds all logic.  He is content with his life as it is.  For the first time in our lives, he is an absolute pleasure to be around.

Some things lost started to come back.  He began writing more and more too, signing his name.  Once he even wrote a letter to our son Chris, although most of it was illegible to me.  He played games with a tablet I had purchased for him, and I could see he still knew most of the capitals of the countries of the world.

Unfortunately, the nurses went on strike about the fish oil and refused to administer it any more, stating he had suddenly developed diarrhea and that the oil was bad for the feeding tube.  I could do nothing.  At around that time, he developed a tremor in his right hand, rendering it impossible for him to write anymore.  His gait changed to baby steps instead of solid forward step movements.  Before long, the doctor had diagnosed him with “Parkinson-like symptoms” and put him on Parkinson medications.  Fortunately for me, I was able to give him some food to eat.  Swallowing has been an issue since getting the trach sewed up.  His concentration comes and goes, and he forgets to swallow, or swallows only incompletely.  But I could give him pureed food, and with that, begin feeding him the fish oil again into his mouth rather than through the feeding tube, beginning with a very low dosage.

The Parkinson symptoms continued, or changed, from tremors to cyclical movements of his hands and arms, like chopping the air.  Otherwise, the medications have changed nothing of his symptoms.  But, the hospital decided he’d had enough rehab to be able to go home.

After two years and three months of hospital, rehab hospital and group home stays, my husband and I are finally living under one roof again!  And I am caught up now in this blog to the present.  From now on this blog will be about our daily life, living with the aftermath of the stroke.  There’s still no way outa here, but life in this place I would never have chosen has turned out to be something very precious.

No Way Outa Here – 8

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Acceptance. A key word in the twelve-step programs. I continued going to my twelve-step group, the one I’d been going to for years.

Years before this all happened, I had been so fixated on fixing my husband I couldn’t find a way to live at peace with my own life, or even know what my life without him was about. When I felt he was out of control, I was out of control. At one of these low points, someone told me about a twelve-step group, and I joined one. It was a struggle to learn to let go of this constant obsessing about my husband. Even after I had separated from Michael, it was difficult not to see everything as a project to fix him. If only he’d cooperate, I kept telling myself. Then our marriage would work! Twelve-step groups are all about taking responsibility for our own lives and letting go of the responsibility we take for others.

I worked at it, not terribly successfully, but I worked, and so did Michael. We reunited after a year of separation. During that year, I spent a lot of energy trying to find a way to stop focusing on him, but still, my thoughts kept returning to my longing for him to change. Now back together again, I was hopeful for a new future together. How much greater the shock and my inner outrage to be three months into reconciliation, and then for a terrible stroke to separate us more thoroughly than ever. Now I was technically living with a man who was in a coma, in the intensive care unit, fighting for his very life. I could talk all I wanted to him, but there was even less feedback than from talking to my dog. More reason than ever to obsess. My need to detach was more urgent than ever. I really, really needed to find a way to go on living, to find the strength to go on, to find faith, or I would go under.

My twelve-step group became one of my mainstays, and the prayer we say every week became a lifeline for me. “God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.” I needed to accept my situation as it appeared every day. And slowly, probably because I was truly desperate now, I discovered that I was finding the ability to accept my situation. My urgent neediness was a gift, making it possible for me to accept each new day with the challenges it presented me.

For most of November, 2014, Michael was in a coma. We lived in a constant cycle of high fever (central fever, they called it), high blood pressure, infections like pneumonia, and tremors. His body couldn’t regulate normal temperature anymore, so he had a constant elevated temperature – central fever, and this fluctuated wildly. They diagnosed the tremors as part of epilepsy. More medication now, this time to deal with the epilepsy. At one point, a doctor told me Michael possibly wasn’t waking up because they’d been over-medicating him. So they started experimenting with medications. He continued to have high temperatures and to sleep. I wondered if he would ever wake up again. Once he woke up for a couple of days, and even mouthed the numbers one to four for his speech therapist. The following day he responded to a visitor who came to see him. I was elated! But he fell asleep the following day after another bout of high fever and seizures. What was I supposed to accept? That he would never recover? Or insecurity, uncertainty?

All of the above. I didn’t know what kind of God would allow us to go through what we were going through, but I decided that the goodness I had experienced had a souce, and that this source was the God I had been following.  I would  continue to follow Goodness. Psalm 23 became a mantra – “Surely Goodness and Mercy shall follow me all the days of my life.”  Well, I wasn’t sure they were following me, but I would follow Goodness.  I said this to myself, but it didn’t feel as though there were any God at all in my life.  Goodness was an abstract force for me, but logically the strongest force of all, one that I vowed to trust, no matter what. Even now, if I looked, I could see that there were good things every day – maybe a good meal someone cooked for me, a kind email, a beautiful sunset. I would accept and follow Goodness, with God’s help. I had no divine messages or feelings of being carried, or any sense of God’s presence, but I did find myself carrying on, somehow able to face each new day without falling apart. This was how I could accept the monstrous thing I couldn’t change.

I was also doing the things I could to help the situation.

I went to therapy. As with the twelve-step emphasis on acceptance that I was learning, I had been learning new ways of dealing with pain in therapy. The therapist invited me to look inside my body and identify where the pain manifested itself and to sort of sit there and hold it, watching it, allowing it to be there, also feeling my feet on the floor, following my breathing. In this way I learned that I could tolerate emotional pain and that it would leave, in its own time.

I began every day with what I call my “quiet time”. I read about persecuted Christians around the world and prayed every day for the one on that day. I read out of my twelve-step daily guide, and out of the Bible, focusing now on the book of Job, since it seemed appropriate to be reading about someone else who had suffered at least as much as I. Then I would pray and meditate for around twenty minutes, allowing whatever thoughts and feelings that came to be there. Usually there was nothing special that came, but now and then I had a helpful insight.  I think the most helpful thing was just sitting there with God, letting God be privy to all that was going on. I accepted the tears or whatever confusion or lost feelings I had, and let God have them.

Writing my update/prayer emails also helped. It was good to record what was going on, and to get it out somehow. I didn’t like telephoning and having to explain myself over and over. But writing it in one email to a lot of people was a wonderful way to express myself!

One person on my email list wrote back to me, “You need to have a close friend come and stay with you for a while. You need female companionship.” None of my friends here in Germany had the time to come and stay with me. But my friend Nancy in the States had recently retired and was complaining that there wasn’t enough for her to do. I invited her to come and stay with me, and she accepted!

It was just the thing I needed, having her companionship. We rode the tram every day together to the hospital, talking nonstop in each direction of the half-hour ride. She bore the frustration and disappointment of seeing Michael asleep day after day with me. We did fun things like cook and bake together. We cooked for Thanksgiving and invited my German friends. We watched Sandra Bullock movies, since we’re both Sandra Bullock fans. Nancy was here when the famous Christmas markets in Cologne opened, and she bought lovely German-made Christmas souvenirs to bring back to her family. We prayed together, sharing our deepest thoughts and longings. Even now, more than a year later, I feel so much closer to her because of her time here with me. She still writes me beautiful, encouraging notes that lighten my heart and my burden.

On the day before she left, December 2, we both got an early Christmas present from God – Michael woke up! And he even responded to us, blinking yes to several questions we posed.

He stayed awake off and on for almost two weeks, giving me hope that recovery would indeed be possible. One of the doctors on the ICU at the university hospital went out of her way several times to help me. She even allowed Michael to receive high dosages of fish oil, something a friend told me about. There were several reported cases of people with severe brain injury who experienced amazing healing after receiving two grams of fish oil daily. Fish oil is high in omega 3, the same substance our brains are made of. Was it only coincidence, or was the fish oil really making a difference in Michael’s level of consciousness?

I’d been practicing prayers of gratitude and trying to stay in the moment in a similar way to when I work on a new piece on the piano. I spent my days looking for whatever I could be grateful for, and when my thoughts drifted into worry, I would try and come back to the present.

Michael was doing so well, he would be able to be transferred into a rehab hospital. A week before Christmas, he was transferred. The day after his arrival, he fell into a coma again.

Chris returned from abroad for Christmas, only to find his father mentally gone by the time the holidays began. On Christmas Eve, Chris and I went to church together, and then took our presents by taxi to the rehab hospital. Michael slept as we opened his presents for him.

During the hours apart from Michael, we enjoyed Christmas, eating great meals and enjoying each other.  With Michael, we sat helplessly in the silence of his room, enveloped in surgical masks, paper gowns and plastic gloves. He was in quarantine until they could ascertain that he didn’t have any multi-resistant bugs. No more fish oil. The doctor at the rehab hospital wasn’t convinced it would help. He was afraid it would only give him a worse case of diarrhea than he already had.

I tried to see this as a time to keep focusing on the goodness of God, the things that I knew to be good, and to be thankful for them. I kept trying to stay in the present. During all of this, Michael continued to sleep. Would he ever be healed? The doctor didn’t think so. On two occasions he said to me, “I think your husband will probably look something like this for the rest of his life. You need to accept this instead of clinging to hope that he can be healed.”

No Way Outa Here – 6

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I thought I had posted everything I’d written thus far, but when I went to post this, I found that there was a draft which I’d written several months ago and failed to post.  I posted that entry just a few minutes ago.   If you’re reading this all at once, remember that my scenes jump back and forth in time somewhat.  The stroke was in October, 2014, and now it is February, 2016.

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Recreative Suffering

One of our family secrets that came out when I was well into my adult years was that one of my uncles, whom we nieces had long had the sense to stay away from, had a woman on the side. When my mother finally told the story, she moaned, “How could he do that to Alice?” Alice was my aunt, my father’s sister, and Muriel was Aunt Alice’s home health aide.   “Here she’s hired to be there for Alice, and she goes and betrays her.”

We’ll never know whether Alice sensed what was going on, because she has long since passed away. Alice suffered short-term memory loss following a brain hemorrhage that almost killed her. She survived a good thirty years after her hemorrhage. The lively woman she had been beforehand never reappeared again, but still, a vow is a vow, and a person is a person, my mother and I thought. Maybe I had no pity for my uncle because I had seen some of his unsavory side. I certainly avoided being touched by him.

I’ve heard people on radio talk shows defending this behavior – not touching minors in private places behavior, but that of partners of disabled persons who seek companionship or sexual gratification outside of their partner, who is unable to give it. “Those left behind by their partners also have needs,” they say. “They shouldn’t be deprived.” Well, I thought, my uncle ought to be deprived of this Muriel and more.

Now that something similar has happened to Michael, I can well imagine what it must have felt like for Alice. Even if you can’t remember things, you can feel what’s going on. One can have memory impairment and still be very sensitive to what is going on at the moment. People with memory loss can also feel other losses as they occur or during the unexpected moments when their memories are triggered. We’re only kidding ourselves if we think our partners are oblivious to what is going on around them.

I sometimes feel needy for Michael’s affection. I remember times he used to stroke my hair or hold me, times we had sex, and there is an ache, sometimes sharp, sometimes dull.

At other times I stagger, as with a blow to my shoulder, by memories of things we did together. Today I remembered driving with Michael down some German Autobahn or other, on our way to having a good time together, listening to classical music on the radio or an audio book. We enjoyed each other’s company all the time, also on the way to wherever we were going.

There’s a stretch of highway that goes from Cologne to well into eastern Germany. “It’s almost all forest from here to Erfurt,” he said. He enjoyed that stretch. Once or twice we stopped at an outlet store on the way and bought clothing. I can see his driving style, quick, even jerky, confident, in a rush, but competent. “Rub my neck,” he says, and sighs contentedly as I rub the stiffness out of his neck.

And now I long to remember, to dredge up all the memories, to feel their vividness, even as they seem to fade away. I want to write it all down, to not forget anything, for they are all I have right now of the man I lived with for thirty years.

Would I want to run into someone else’s arms for sex or companionship? No way! Part of what pricks my memories now is the knowledge that I was ignorant of my blessings, all the while I was being blessed. I sat in the car and enjoyed Michael’s comments, the easy flow of conversation, but I don’t remember any gilded awareness of this being anything special. I found it awkward trying to massage his neck from my passenger seat. I enjoyed sex, and then enjoyed sleeping afterwards, cuddling into him, all the while wishing he’d reach out for me more often.

My brother told me the other day, “I can’t imagine the suffering you must be going through.” I agreed with him that I suffer. Then I thought to myself afterward, But I do get through the days, don’t I? My life is interesting, even now. So how exactly am I suffering this loss?

I feel it is important to record it, to examine it, not to forget that this man whom I married over thirty years ago is the person I miss, not just some general companionship or the feeling of being sexually aroused. For me what counts is the person behind it all.

The way I deal with this, what I try and do is, not to run away from the suffering, but rather to remember what we had and feel the goodness of it. As I look, I see what we had in a different light. In a way, my memories are recreating the past, making beautiful what were sometimes mundane scenes. They modify and make mellow the painful scenes, of which there were also plenty. But I’m seeing even the painful times through a different lens, and that is a good, heartening process that makes me feel good.

So the suffering has lots of goodness in it. It’s helping me to appreciate, to understand, to value.

Sometimes I am rewarded in the present tense. Yes, Michael is in some ways a different person right now than he was before. But he still looks at me and knows I am his Schöne. There are times when I go to visit him and he is alert. In fact, the good days are so frequent now that even his bad days are fantastic, compared to what they were a year ago. There is hope. I doubt he’ll ever be driving the car again, but maybe one day we’ll be sitting in the car again, on our way somewhere. Then I can ask him to rub my neck!

About a week ago I visited him and his hands leapt up into the air in a greeting of exultation. I had forgotten that gesture. How good to get it back! I remembered the words he always said. At the time, it exasperated me. He was always excited to see me, but his greeting just wasn’t like in the movies. No slow, dreamy, romantic soft gliding of his hands. With Michael it was abrupt. But now that it had come back, I treasured it. Then he reached for me. I bent down and he kissed me eagerly on the lips. His eyes looked hungry for more. He is also needy for companionship, I realized.   He tried to pull me to him with his stiff arm and claw-like hand, bent with contractures. He stroked my hair. Before long, it felt like all my hair was in my eyes, but Michael was stroking it! A year ago he lay rigidly in his minimally conscious state. Now he was patting/stroking my shoulder. I stroked his arms, his face, careful not to lean into him too closely to restrict his breathing. His shirt was moist with secretions from his trach. No matter. We were sharing affection. We still love each other, after all these years. I love him in a deeper way than I ever loved him in the past.

Those moments are so wonderful, I almost think they’re worth the suffering.

No Way Outa Here – 5

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If possible, I think the next phase was even more frightening and lonely than the two weeks I had just been through.  After all, just days before, Michael had finally woken up and started to talk to us.  I had found hope that he could recover.  But when he started having violent tremors, combined with a very high fever, sky-high blood pressure, high blood sugar as well, and pneumonia, I felt on the verge of despair.

As soon as I complained about Michael being on a normal ward, the doctor decided to put Michael into the intensive care unit.  I came to know this unit very well, because day after day, Michael just wouldn’t wake up.  At one point, they put him in an artificial coma to see if that would lower his blood pressure and stop the tremors.  It did, but they couldn’t keep him like this.  In addition, he wasn’t swallowing well, and the doctor feared that the breathing tube going from his lung through his mouth, the same thing he had had in the previous hospital, could be causing the pneumonia.  Having my husband in an induced coma was also no fun, but it was better than having him sleeping day and night, when he should have been awake.

The picture the doctors were forming of my husband didn’t help,either.  The tremors turned out to be epilepsy, at least some of the time.  How much new damage had occurred?  In addition to all the other monitors, he now needed regular EEGs.  One doctor said to me, “Your husband is a very sick man.  He has an awful lot of fronts to fight on – the stroke, pneumonia, high fever, high blood pressure, epilepsy, and diabetes.”  Another doctor told me not to expect linear healing.  “Healing with stroke victims occurs in waves,” he said.  “Look for patterns, tendencies, but remember that waves always go down before they come up again.”  This was helpful advice, but with each trough I would tend to panic.  Was Michael going to experience any recovery at all?  Was he going to survive this?  He wasn’t getting any better – in fact, some days the nurses would despair of finding ways to lower Michael’s fever, or for the blood sugar count to come down.  They kept trying new anti-epileptic drugs to stop the tremors, but these drugs may have also contributed to his being asleep all the time.  The “astronaut” tube food he was being fed was not good for his diabetes.

One day a nurse came to me and asked me if the living will we had said anything about resuscitation after heart failure.  I had no idea.  The wife of another patient in the ICU told me her husband had received resuscitation, and that was their mistake – now he was alive, but brain dead.

I went home and woke up the next morning thinking about the living will.  Technically, from what it said in the will, I reasoned, we should be letting Michael die.  It said he should be receiving no life-prolonging measures.  That meant no oxygen and no tube feeding.  What was I going to do?  I didn’t want my husband to die!  But they might make me do it because I’d signed that in the will!

I panicked.  I was at home, all by myself, and started to scream and cry uncontrollably.  I don’t remember the details clearly, but I must have called a friend to help me, because I knew I couldn’t be alone.  She came right over, and I also  called another friend who could spend more time with me.  Together, my friends managed to calm me down, and one of them took me to the hospital to talk to the doctor.

The doctor told me not to worry, that they would do nothing without my permission, and that at this stage, when Michael’s life was at stake, he needed all the things he was receiving.  This was not the time to think about pulling the plug, he assured me.  I was tremendously relieved.

I kept writing emails every evening to all my family and friends, both in English and in German.  It was always a struggle to write in German, knowing I would make many mistakes, and it was more difficult to express myself in German than in English.  But the responses I got made it all worth it.  “We’re praying for you,” was the tenor of most of the emails I got back.  Sometimes I got emails from people I barely knew.  People were passing my emails onto other people, onto strangers.  Churches I had never heard of were praying for Michael.  I made a rough estimate of all the people I had heard were praying.  I came up with about a thousand people!  My husband is well-known in the Christian circles where we live in Germany, and all the pastors he knows asked to be on my email list, and they forwarded my emails onto other people.

It was comforting to know that so many people were praying for Michael.  But the prayers weren’t helping to wake him up.  Day after day, I would go to the hospital to visit him, who remained day after day in the ICU.  No change.  The tremors were still there, and he was still out, dead to the world.  Where was God?  Why hadn’t God heard our prayers, given so sincerely before Michael went in for surgery, for protection?  Even Michael, normally so fearful of doctors and hospitals, had gone into the hospital, trusting that all would be well.  Was there a God at all?

It is very difficult to bear the pain of watching someone in what looked for all the world like a coma, wondering if this person would ever wake up.  His face looked peaceful, and that was a mercy.  But it was too much for my heart to take in, watching him.  I longed for the days when life with him was so difficult.  At least I had him, back then!  If only I had appreciated him more.  There was so much goodness in him that I couldn’t see because I had been so focussed on his glaring faults.  Now I knew that I had no idea in those days how deep despair could go.

The emails I was receiving were mostly encouraging, but not only.  Sometimes I felt the pressure of the spiritual expectations of my friends.  “I pray that you receive a word from the Lord for each day,” one person wrote.  A word from the Lord?  I was wondering how the Lord could be so unkind as to let the worst imaginable thing happen.  What could be worse than living in a coma for the rest of your life?  Other people wrote, “I pray that you will feel God carrying you.”  Some reminded me of the piece about the footprints in the sand.  I thought of that myself nearly every day, but I certainly didn’t feel carried.  I had never felt so alone before, even though I was being carried by friends, who kept bringing me food and offering to help in any way they could.  That helped.  But God carrying me?  God felt far away.  “I pray for strength for you to endure,” some said.  I could relate to that prayer.  I was somehow enduring.  I prayed every day for strength to endure, and somehow I did.  I couldn’t feel or sense where the strength was coming from, but I was enduring.

I decided to read the book of Job at this time.  I found it comforting to read that he also felt alone in his misery.  He also wondered where God was, and how God could allow this to happen.  He knew that he was a righteous man, and so his fate could not be seen as punishment for his sins, as his friends so wrongly interpreted.  I knew that Michael had many unresolved issues in his life, issues making life impossible for himself and for me, but I didn’t think any of his weaknesses warranted this calamity that had befallen him – and me.  I was bereft, more than ever before.

But I kept looking for God – all day, every day, even when I couldn’t find any traces.  One evening, though, while out walking the dog, I suddently remembered a line from a gospel song we used to sing in church when I was a teenager.  “I don’t know what the future holds, but I know Who holds the future.”  This was a thought that had come out of the blue.  God had spoken to me!

I also remembered the strange thing that had happened to me on my wedding night.  Just as I was getting ready to go to bed with my new husband, I heard these words, not audibly, but clearly just the same:  “Married life won’t always be easy for you, but I will always be with you.”  At that time, I had never “heard” God, and I was surprised by the message I heard, because I was looking forward at that time to a lifetime of “happy ever after”!  What a comfort those words have been to me over the years, as I’ve discovered that life isn’t necessarily as happy as we would wish it to be

I endeavored to accept the situation, however disastrous I considered it to be, as it was just to let it be.  Every day I prayed the prayer those of us in twelve-step programs say:  “God, grant me the serenity to accept the things I cannot change, courage t change the things I can, and wisdom to know the difference.”  I put all my energy and will into accepting this horrible thing that had thrown us off our feet.   Actually, knowing there was no way to get out of this desolate place was a help.  This was the place I had to live in now, and there was no running away.  No more agony of too much choice.  Now there was nowhere to run to, except into God.

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Writing this blog is proving to be a very difficult thing to do.  The feelings of months ago come rushing back to me and I feel the pain and horror of those days, coloring whatever my present days bring me.  I still often wish I could run away somewhere.

In my past, leaving difficult situations was my typical solution, albeit after long, long deliberation.  I left Minnesota, where the winters were cold and desolate, and where I felt little warm approval from my strict father and passive mother.  I hated Minnesota, with its strong cool Scandinavian influence.  I escaped to sizzling hot New York City, where people are so expressive, they talk with their hands.  But there, I fled an unhappy love affair, returning to Minnesota, only to leave it again, still dissatisfied with the environment I had grown up in.  A brief stint in Boston, then back to New York, where I started to find myself in God, but then the opportunity to leave New York for Germany.  I soon found Germany to be cool in temperament, and had the opportunity to leave with my husband for Brussels, where I lived in semi-contentment until our posting there ended and we were forced to come back to Germany.  It took a broken elbow and a wrist that won’t quite let me hold my fork to my mouth in the German style, for me to come to terms with living permanently in this country.  When things got too bad with my husband, I left him.  But now I know there is nowhere to run to, and this is where God can catch me.

Sunday I was driving home from visiting Michael, listening to a folk music program on the radio, when they played a woman from Norway.  Her voice stunned me so much, I almost drove to the side of the rode, just to listen to her music.  Her voice captured the solitary state, the loneliness I so often feel in my soul.  There was deep longing in her voice, but also warmth, as if she had also found hope, or even possibly fulfillment in the midst of her longing.  That was exactly the state I found myself in.  I thought, either this woman is longing for what Jesus can give her, or she is singing about Jesus.  Suddenly I heard the word, “Jesus”, the only word I could understand, and I knew.

No Way Outa Here – 4

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That evening, October 22,  we heard the diagnosis confirmed.  Michael had suffered a stroke on both sides of the thalmus.  What the doctors knew so far was that he had lost the ability to stay awake and alert.  So now, we knew the reason he had been asleep for nearly a week!  Hearing this news was still like a hammer shattering the walls of my heart, but by now I’d had a day to take it in.

In the meanwhile, Michael was talking a blue streak in his new surroundings – the stroke unit of the university hospital.  I hardly understood anything he said, so I asked him, “Are you trying to tell me the story of what happened?”  He said yes.

Chris mentioned to him, “Oh, Papa, I can hardly imagine what you’ve been through in the past week.”

Michael answered, “You have no idea,” waving his hand in the air for emphasis.  But he also told us something that we found very encouraging.  “I managed through the whole of last week, and I will manage the rest.”  This was very different from the Michael I was used to dealing with, fearful of so many things I couldn’t count them.  His blood pressure would shoot to the stars every time it was measured by a doctor, simply because he was afraid of the results.  And now he’s saying, “I’ll manage the rest?!”  Incredible.  God must have been speaking to him during that week.

It was a huge relief to be able to talk to Michael, even if we couldn’t understand most of what he said.  The following day we witnessed him talking to one of the nurses, who was from Portugal.  “Hola!” he said to him, when Michael learned that the nurse was Portuguese.  Michael can speak nine languages fluently, and a smattering of a few others.  Portuguese is one of those with a smattering.

By that Saturday, October 26, Michael was talking a lot more clearly, but was telling the speech therapist things that were patently untrue, such as that he had lived in England for three years, and that was why his English was so good.  Michael has never lived in an English-speaking country.

He was also trying to pull out the catheter, and joking about it.  “Yes, I know, the cat,” he said.  Apparently “cat” is an abbreviation Germans use for “catheter”, which is pronounced without the “h” – “cat’EH-ter”.  He tried to operate the remote control, used to turn the light on or off, or call the nurse.  He was having difficulty pushing the right buttons.  “I’m stupid!” he complained.  Michael is possibly the most intelligent person I have ever met.  It was upsetting to hear him say this.

By now, realizing that we were in for a long haul of recovery and therapy, I tried to mobilize my resources.  I had started writing emails to all my family and friends, even before he went into the hospital for surgery, asking them to pray for Michael.  I’m not nearly as eager to communicate in languages other than English as Michael, but I decided I’d have to grin and bear all the mistakes I’d make writing in German.  I started an email prayer list in German as well as in English.

Before long, I was receiving all sorts of offers for help, something Chris and I truly needed.  I had told the language schools where I was teaching English what had happened, and they found substitute teachers for me, which was a relief, but I was in no position to cook.  I was far too upset.  People started bringing food over.  One friend gave me a massage.

“We’ll get through this,” Chris and I told each other.  But on Sunday he had to fly back to Korea, where he was finishing a master’s degree.  I would miss his presence and support.  Now I would be on my own, dealing with the aftermath of Michael’s stroke.

We went to church on Sunday.  It was so good to be among the support of fellow Christians!  They crowded around us and offered support and prayers.  Then we went on to the hospital, so Chris could say good-bye to his dad before leaving for the airport.

We had difficulty finding him at first.  “Oh, we’ve moved him!” said a nurse. “He was doing so much better, so we moved him off the stroke unit into a regular unit.” As soon as we entered the room, we saw something was very wrong with Michael,   and he wasn’t hooked up to any monitors.  No one was witniessing what was happening to my husband.  He was gone to the world, in a deep sleep or some sort of unconscious state, and his right shoulder and head were in constant tremors.    This was the state Chris had to leave his papa in.

After Chris had left, I went back to the hospital that evening.  Michael was still unconscious, and still having tremors.  “Is this epilepsy?” I asked the doctor.

“No, I don’t think so,” she said.  “I think it’s just his high fever.”

I went home to bed, lonely and scared, praying like I never had before, but less sure than ever that the God I was praying to heard my prayers.

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This blog series is about the process I have been going through in my thinking, my emotions, and especially how my relationship with God is changing, so I don’t want to give it all away.  I want to share the process with you.  But I do want to share a bit of today with you.

A lot of what I’ve been going through has been challenges.  I am confronted with what I see every day, and also the question:  Where is God in all of this?  Is God there?  Am I going to trust God anyway?  So, I often make flat decisions to trust, no matter what I see or feel.  I read my Bible every day, I pray almost automatically, without ceasing, bringing it all to God, even if I feel horrible, I meditate, waiting for God to speak to me, even though I am often left without an answer I am aware of.  There must be at least a thousand people praying for Michael and me – I have asked everyone I know to pray, and they have asked people I don’t know.  I meet regularly with some friends in a prayer/support group, where we pray regularly for each other.  And I go to church every Sunday.

Tomorrow I’m going to give a testimony in church about how going to church has helped me.  Today I read in Hebrews 10:24-25 – “And let us consider how we may spur one another on toward love and good deeds, not giving up meeting together, as some are in the habit of doing, but encouraging one another.”

This church supported Michael and me all during our separation.  I never told the members exactly why we had separated because Michael didn’t feel ready to talk about his issues with them.  But they supported each of us, just the same, never criticizing or judging us.  After Michael suffered the stroke, they would come up to me each week and ask how I was doing, how Michael is doing.  They pray regularly for him, and also for me.

I have been a Christian for so many years, and I am a critical listener.  Usually, the sermons don’t touch me that much, but I am learning to listen to the heart of the speaker, and this is helping my critical mind to be more open.  So I am changing, even in this respect.  Sometimes the sermons even touch my heart!

The sermons may or may not reach me, but the worhsip never fails to touch me.  Every Sunday there is some song we sing that stays with me, speaking to me all week.  I often find that even by Wednesday or Thursday after Sunday, that song is still ministering to my heart, building my faith.

Years ago, I felt obligated to go to church every Sunday.  Michael had decided to be a pastor, and so I had no choice but to join him, I thought.  He said that God had called him into the ministry. I couldn’t see it, though, and I resented the feeling of being expected to minister to others, whether I liked it or not.  On warm summer Sunday mornings, I would see couples out for a stroll, people out walking the dog, families gliding past our car on bikes.  I wished I could join them.  I felt roped into going to church.

Now I wouldn’t miss it!  Both Michael and I have a lot more support than anyone else I’ve encountered outside the Church.  And every Sunday, I am ministered to, as well as sharing in the ministry myself.

This Community that Jesus dreamed of, when it is drawing from Christ, is a beautiful, wonderful life-giving thing, a living, breathing organism, and I am now so thankful to be part of this body of Christ.

No Way Outa Here – 3

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Mama sitting on her eggs

Hm-m-m.  How to structure this series so that there is some connection between what happened way back in October, which normally feels like decades ago, and today?  I feel the need  to tell you readers how I responded to the earthquake that shattered my life, and somehow connect that with today.  When I read over my notes and emails of what happened eight months ago, the feelings, which had long since faded into the background, rush back, and I have that to deal with too.  But I hope this blog will be a means of comfort – for myself, as well as for you, the reader.  I also want to share honestly how I’ve been dealing with what happened, hopefully to connect with some readers who may be experiencing, or may have experienced, something similar.  Or maybe you simply wonder how one deals with something like what happened to me, and want to read my blog for this reason.

The day I heard the news that Michael had suffered a stroke, I was in the doctor’s office, trying to get help for a sinus infection, so as hopefully not to infect Michael.  From the doctor’s office, in the waiting room, I made a routine call to the hospital, something I’d been doing every morning since his surgery on October 15.  Now it was October 22.  I had visited him the evening before, when Michael was finally starting to wake up!  The doctor quickly removed his breathing tube, and Michael started talking non-stop to our son Chris, who had flown back home to be with his dad, and me.  Most of it wasn’t making any sense, but we attributed that to his exhaustion and weakness from the high fever and constant rocket-level blood pressure.  He did mention the word “stroke” to me, and “crazy situation”, but I assured him what the doctors had told me, that there had been no stroke.

So, when I phoned the hospital that morning, I was completely floored to hear the doctor now announce to me, over the phone, in the ENT doctor’s office, that my husband had had a stroke.  I screamed, right in the waiting room, and started wailing so loudly, a nurse came in to see what was wrong.  She put her arm around me and took me off to somewhere I could wait and cry with her to comfort me.  I saw my doctor, who examined me while I sobbed.  He sympathized with me and told me I could get something to calm my nerves in the pharmacy downstairs, and offered to call a cab for me.  But I, ever the one needing to prove  how strong I am, declined.  I went to the pharmacy, got some lavender capsules which were supposed to steady my nerves, swallowed one, took the tram home, delivered the tragic news to Chris, and we fell into each other’s arms and wept.

The news was bad enough, but we had no idea of the implications.  Thalmus – what is that, we wondered.  We were told that Michael had been affected on both sides of the brain, in the thalmus region.  He would have full use of all his senses, and his intellect was not impaired either.  What was affected was his ability to organize all the sensory input that came his way.  His ability to regulate sleep and awake time was also affected.

That day he was transferred to the university hospital, where he finally had a neurological exam, complete with MRI.

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As I visit that horrible day from so many months past, the feeling of devastation, of having my world suddenly lurched upside-down, comes back, almost as if I had heard the news just yesterday.  I have tears in my eyes today, as I write.  This seems to be something you just can’t get used to.  Yes, you can get into a routine of some sort each day, but even this morning, as I anticipated writing this, I noticed my queasy stomach, and a feeling of generalized fear, or perhaps vague anxiety.  I live with these feelings every day.  They are my constant companions, but they’re normally somewhere in the background.  Other things, little gifts, also come my way.

I have decided to believe that these gifts are God’s way of showing me that all is not lost.  My faith in a good God, or in any God at all, has been put through the wringer.  More about that in other posts.  Today, I simply want to say that I have also received many gifts since Michael’s stroke.

The latest gifts have to do with birds.  On our terrace there is a lovely lavender bush, in full bloom right now.  This spring a blackbird decided to build a nest in our bush.  Since May, I have been privileged to observe blackbird eggs, which are much smaller than chicken eggs, a beautiful soft shade of green, and spotted.  Blackbird eggs

I have seen one clutch hatch five birds, and watched their development all the way to their flight out of the nest.  And now, the mama has layed her second clutch, and I get to watch four more birds develop.  I see how the mama sits on her nest, day after day, warming the eggs, preparing them her unborn babies for birth, and then after the eggs hatch, she sits again, day after day, protecting her fragile, helpless young.  I see both parents feed their young, taking turns.  I have read that blackbirds are monogamous, and that they normally remain partners for life.

These birds inspire me with their faithful care of their babies.  I am awed to see the helplessness of newborn baby birds, who are born blind and without feathers. Blackbirds 2 days old and hungry!

I am reminded of Jesus’s words, “Are not two sparrows sold for a penny?  Yet not one of them will fall to the ground outside your Father’s care.  Don’t be afraid; you are worth more than many sparrows.”  These blackbirds, whose song I have always dearly loved, show me tender caring love, and they are cared for.  They show me that I am being cared for too.

On Sunday a guest choir sang in our church.  One of the songs they sang was the old gospel song, “His Eye is on the Sparrow”.  They sang this song just for me.  Today is Wednesday, and I’m still singing their song.  Today I watched a video of the Statler Brothers singing it, and I let the words massage my heart.  I feel peace as I sing this song and watch my birds, day after day.  I feel my anxiety being steadied, and I smile and marvel at the hope that flutters in my heart.  Yes.  God’s eye is on the blackbird, “and I know He watches me.”

No Way Outa Here – 2

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On the Saturday before Michael went in for surgery, we went to Düsseldorf for brunch.  We wanted a nice weekend together before the big event, to be in the city of Michael’s childhood, the city I first lived in after arriving in Germany, the city where we first met.  We have many ties to Düsseldorf, most of them pleasant.  We ate at a nice cafè near the poshest market I have ever seen – anywhere.  After breakfast we walked through the market.  Well, I walked and Michael hobbled, hardly able to move at all, he was in such pain.  He went to get the car, picked me up, and we drove to the Japanese part of the city to buy some porcelain tea cups.  It was a lovely day.

The night before going into the hospital, I made us tacos, the same meal I had cooked for him the first time I ever cooked for him.  Since that time, thirty-three years ago, tacos have always been one of his favorite meals.  Back then, tacos were unheard of in Germany.

Michael was very positive about surgery, unusual for him.  He trusted his doctor, we had prayed for everything surrounding the surgery, the entire church had prayed for him.  He went into surgery relaxed and hopeful about a release from his excruciating pain, looking forward to a new lease on life.

I phoned Michael that morning to wish him all the best for his surgery.  “See you on the other side!” I said merrily and went to work.  I was a bit uneasy while teaching.  After all, the operation was no picnic.  It would take over four hours.  I took my unease in stride.  This was major surgery, after all, and Michael hadn’t been operated on since he was a toddler.  He’ll be fine, I told myself.

Late that afternoon the doctor who had performed the surgery phoned me, saying there had been a complication during surgery.  The extra vein in his neck that they had intubated for administering fluids had collapsed during surgery.  That meant that almost the entire infusion had dripped into his face and neck.  They couldn’t remove the breathing tube with the amount of fluids that had accumulated in his face and neck.  They gave him more anesthesia to give his the swelling time to reduce.  Nothing to worry about, but he was in the ICU for now and would remain unconscious until the following day.

The following day, he failed to wake up.  I began to be nervous.  He looked horrible, with his face so fat.  And so vulnerable.  The day after that, Michael still did not wake up.  I started to feel alarm rise up in me.  The head doctor or ICU came into Michael’s room to talk to me.

“We did a CT scan,” he said.  “Nothing to be alarmed about.  We did find some abnormalities in the brain in the thalmus area, but the shadows look old.  It could be some old neurological damage that was never identified.”  It wasn’t a stroke, he said.  Another doctor came to me and told me she had tried to order a neurological exam for that day, but the neurologist they used was unable to come to the hospital on that day.

With this news, I became alarmed.  I was very worried.  But it was the weekend; nothing happens in German hospitals on the weekend.  I spent hours that weekend talking to my family in America and to doctors, trying to find a way to have my husband examined neurologically.  But the hospital would not budge.

“This isn’t like in America, where you can just call a neurologist and have him come in,” said one doctor to me.  The head of ICU came into the hospital on Saturday morning, just to tell me it was far too dangerous to transport Michael to another hospital, where he could have an MRI.  I had called a neurologist I knew, and he told me Michael needed an EEG and an MRI.  The hospital he was in didn’t even have a neurologist, so no neurological exam, no MRI over the weekend.

It went on and on like this, even after the weekend, when Michael still didn’t wake up.  By now he had dangerously high blood pressure, a high fever they just couldn’t get down, and indications of pneumonia.

And by now I was writing every evening to my friends and family, one email in English and another in German, asking them to pray for Michael.  I asked those without faith to send their good thoughts his way.  And the prayers and good wishes came in.  But they weren’t waking Michael up.

I told the hospital on Monday that I wanted Michael transferred, danger or no, to a teaching hospital where they could examine him properly.  On the morning of his transfer, I had to see a doctor myself.  I seemed to have a cold, and I wanted it treated before I made my husband’s condition worse.

While in the doctor’s office, I phoned the hospital to see how Michael was doing.  A doctor I had never spoken to answered the phone and told me, “Your husband has suffered a stroke.”

With that news, my entire life turned upside down, and I knew that nothing would ever be the same.    The news took about five seconds to deliver, but the consequences would mean that my entire lifestyle would have to change.  Would my husband even survive all this?  That very evening, in the university hospital, after studying the results of the MRI exam they game Michael, the neurologist confirmed that he had suffered a stroke on both sides of the thalmus.  “Your husband is a very sick man,” he told me.

No Way Outa Here – 1

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There is a fact that I did not disclose when I wrote “Rubies in the Rubbish” – my separation.  I had separated from my husband a few months before going to Egypt.  We have known each other for over thirty years and had been married for almost thirty years when I decided I needed to live elsewhere for a while.  There were some issues in my husband’s life he was unwilling or unable to deal with, and they were getting worse.  The worse his condition got, the more I sank into anxiety, fear, anger and frustration.  I was unable, no matter how hard I tried, to just detach and let him be.  His problems had begun to spill over into our married life and into the space of my life with him to the point where I simply could not let go.  So I left.  I found a way out of my misery.

In this series I’m going to change the name of all the characters to protect their real identity.  Those of you reading this who know me will know who I’m referring to.  In these posts, I’ll call my husband “Michael”.

I told Michael that I would come back after he had gotten some help with his problems and I could see that he was working on them.  I went into therapy and continued with the self-help group I had already been going to.

It felt good to finally be away, to find my own space, to find a life of my own.  Being with Michael had felt like carrying a huge load of bricks.  Now, the weight was lifted.  I hoped with all my heart for recovery for both of us, but in the meantime, life on my own was much easier.

We continued to see each other, and sometimes Michael would cook for me, or I for him.  Cooking was one of our mutual passions, and talking together while eating another one.  Actually, Michael and I are ideal partners.  We love so many of the same things, and we love discussing all the things of life we encounter.  We love discussing ideas, politics, current events, literature, music, religion, psychology, and of course analyzing other people.  I loved listening to him uncover historical details about the places we traveled to.  We are at our best, perhaps, during our travels.  We had already traveled twice together to Egypt, and Michael was involved in my plans to stay with the Coptic Sisters long before I separated from him.

But now here we were, separated physically, emotionally and spiritually.  I stopped going to the church he was pastoring, needing to also be separate from his spiritual energy.

We lived separately for about a year.  Going to Egypt on my own, living in my own apartment, making my own decisions, I felt like I had been let out of a pressure cooker, with the simple push of a button.

During this time, some things started to get resolved and dealt with.  Michael went into a clinic where he could get help with some of the things troubling him.  He changed some things about his lifestyle, and I could see that he was serious about making these changes.  There other things I could see that lay beneath the suraface, things that would need a lot of work.  Michael was beset with a miserable sense of self-worth, especially since I had actually left him.  And shame, mixed with overwhelming anger at his mother, the cause of most of his problems, but dead for ten years already, invaded our home.  Shame, self-hatred and anger lived in our house, like ghosts who refused to leave.  I was still trying to change Michael, still caught up in a mothering role I had developed over the years.  We had lots still to work on.

Michael had a lot more than emotional and spiritual things to work on.  His back, always a bit sensitive, began emitting excruciating pains in the back itself and also in his legs.  He tried osteopathic treatments, physiotherapy, exercise.  Nothing helped.  His orthopedist finally recommended surgery.

In September, 2014, we went on a trip to Turkey together.  Michael lumbered heavily through archeological sites in Ephesus, Miletus, Pergamon and other places, determined to see it all, despite excruciating pain.  He would have surgery in October, and he wanted to see it all beforehand, just in case anything went wrong, rendering him unable to walk over these sites.  It was a lifelong dream of his to see these sites.  Michael has always loved history, especially from the Greco-Roman period.

Reunited, we had a wonderful two weeks together in Turkey, cooking up a storm in the evenings we ate in our apartment, feeding the cats who came to visit us, traveling in the daytime to archeological sites, swimming before dinner, shopping.  I was grateful for the release I had enjoyed during our separation, and now tranquil in the hope of a future together of mutual healing.   There was lots to work on, but we could do it.  After all, we had God helping us!

SAMSUNG

Pergamon. What a peaceful place to be, high above all the stress of life down at the bottom of the hill! In Pergamon we felt as though lifted up by an eagle into space.

Then Michael went in for surgery, and things went horribly wrong.