Tag Archives: Stroke

No Way Outa Here – 12

18 Monday Mar 2019

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Peter had a few good days after that day in the ice cream café.  We had a magical day when he awoke alert and full of energy.  His speech therapy session was good, and he was still alert afterwards.

My practice was always to look for “good days” and then do something outside that would stimulate him, something that I would also enjoy.  The “good days” were relative.  On these days, he was alert enough to be active, but he also showed more confusion.  On the days when he was able to speak and move, he believed he was in Italy and needed to get back to Germany, so could only focus on packing a suitcase and getting out of here, his true home, to return to what he believed was home.

A few days before, on another good day that also happened to be sunny and warm, I finally had an insight into what all this was about.  “When you say you want to go back home, Peter, do you mean you want to go back to your old life?  The life you had before the stroke?”  I asked.  Peter nodded.  I asked, “What is it you most miss about your old life?”

“Relationships ,” was his answer.

I couldn’t give him much in that way.  He was receiving occasional visitors, but the number of visits had dwindled down over the years into his recovery.  It is exhausting spending time with someone who can’t converse anymore, someone whose motto used to be “would rather talk”.  One of his friends told me it was even depressing, agonizing for him to visit his friend who was unable to give him the stimulating relationship he once had.  So he didn’t come very often.

What I could give Peter was a nice day in Cologne.  Hopefully he would recognize what he saw and accept that he was indeed home.  On this day, July 18, Maciek, Peter’s live-in caregiver, took him downstairs on the Scalamobil.  If anyone reading this has someone living at home who is unable to negotiate stairs, this is the thing to get.  It revolutionized our lives.  There were months when Peter was even able to climb stairs on his own, with help, but since the medication disaster in January, he wasn’t usually strong enough for that.  But with the Scalamobil we were able to get down the 20 steps to the street level and roll to the wheelchair-friendly tram stop, board the tram and whisk over the Rhine River.  “Do you see that?”  I pointed.  “Do you recognize that?  That’s the Cologne cathedral.  You see?  We’re in Cologne, after all.”  He nodded his head.  I felt relieved.  He knew where he was.

We disembarked at the cathedral/train station, where I was able to push his wheelchair all the way to the river, where we bought tickets for the Panorama Rhine boat trip, an hour-long ride up and down the river.  We were very early, and hungry.  It was lunch-time.  “How about a Currywurst and some French fries?”  Peter nodded, so off we went in search of a hot-dog stand selling hot dogs with curry sauce and French fries.  We found one, and bought them, and also a diet Coke.  He wasn’t supposed to drink anything without a thickening agent, but today was a good day – why not?  The boat attendants showed us a spot on the boat where we could get a good view and still be able to eat and drink in peace.  We shared the hot dog, French fries and Coke.  Peter swallowed perfectly and didn’t cough, nor did we spill anything.  He spoke during the cruise, asking me the names of buildings he used to identify for me.  So I gave back to him what he had first shared with me.

He had another good day on his birthday, July 26, a gorgeous, sunny day.  On Peter’s 63rd birthday, he was awake and able to eat breakfast with me out on our terrace.  We ate the cake I had baked for him.  He opened his presents.  Then he wanted to go into the bedroom, which is now my room.  I anticipated what was coming – he wanted to pack his suitcase.  I was alone with him because the caregiver was in the hospital, where he had had surgery.  I was nervous about this, but we went into the bedroom anyway, in the wheelchair.   Peter wanted to stand, to look inside his closet.  I allowed this.  He reached for clothes – and fell.  I somehow managed to get him back up and into the wheelchair.

He was alert one more day, again ranting about “getting back to Cologne”.  And then, on August 3, he came down with a high fever.  I took him to the emergency room in our local hospital.  The doctor wanted to talk about his living will.  Should he be resuscitated if he should stop breathing?  What was this, anyway?  He was only in the hospital because his fever wouldn’t go down.  Surely it wasn’t coming to this!

I told the doctor we had specified in the living will that there should be no precautions if he was unable to live on his own.  “I want oxygen,” Peter said clearly.

They thought he may have a gall bladder attack.  “I don’t want surgery,” Peter said.  They did find a blockage in his urinary tract and did a minor procedure, placing a stent in his bladder.

The fever went down, and then skyrocketed, peaking at over 105°F.  Only cold packs could get the temperature down to about 100°, when it would shoot up again.  On August 10, I received a phone call from his doctor.

“Your husband went into cardiac arrest this morning,” He said.  I screamed.

“Please don’t panic.  He is still alive.  We were able to resuscitate him.”

So he had received the treatment he had asked for, after all.  The doctor had ignored the living will.

“I know you had told us not to do this,” he said.  “But we did this in order to save his life.”

I phoned Jon, our son living in Korea.  “I think you’d better come home now,” I said.  He and Dayeong were with Peter in his room in the intensive care unit the very next day.

But Peter’s brain damage was so massive, there was no way to keep him alive without life-support equipment.  We had to let him go.  He died, while Jon, Dayeong and I sat at his bedside, talking, praying, reading Bible passages, and thanking him for his life with us.  We said our final good-byes to him on my mother’s birthday, August 15.

 

No Way Outa Here – 10

30 Monday Apr 2018

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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 – 8

28 Sunday Feb 2016

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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 – 5

03 Wednesday Feb 2016

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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.

*

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

18 Saturday Jul 2015

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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.

*

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 – 1

19 Thursday Mar 2015

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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.