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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 – 11

03 Tuesday Jul 2018

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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.

 

 

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 -9

21 Tuesday Feb 2017

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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 – 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.