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Is it Still Home? My Trip to America

08 Monday Apr 2019

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Prologue “What do you think you’ll do, now that Peter has gone?”  My sister Jenna had flown halfway around the world, all the way from Australia to Germany, to keep me company, and to say her last good-byes to my husband Peter.  I had done the same in reverse when her husband died.  Our son and his wife arrived from their home in Korea in time to be with Papa for his final hours on this earth, and stayed for the burial. August 24, our wedding anniversary, was the day we said our final farewell to him. Now my kids were leaving, tearing another hole out of my heart. Why does my family have to choose homes impossibly far and fantastically expensive to reach?

My family of origin, which consisted of seven children, now down to six still living, is literally a micro-United Nations. We have all married or live with people from different cultures, races and countries. I went to Germany and married a German. There’s Australia, where Jenna and her family live. Japan, where my brother Simon lives with his Japanese wife and family. One brother is living in America, but with a woman from Bangladesh. My brother Jason, who also lives in America, married a Malaysian. Naila’s Sam is African American. Their son Blair longs to go back to Asia to live, where he went to music conservatory. Knowing my family, that is what he will end up doing. My son went to Korea to study, and met and married a lovely Korean girl, and settled down with her in Seoul.

Because my family is so spread apart, there are many places for me to go to. “Go on some long trips and visit all the people I love,” I answered. I had already been to Korea and Japan last summer, so I wouldn’t go there just now. I would go back to America, the land where I spent the first thirty-six years of my life.

I’ve been back “home” so many times over the years, but there are people dear to me whom I haven’t seen very often, some not in years, who live in America.  Besides people, there are also places in America leaving holes in my heart, just like people.  Places like New York City, where my soul seems to be drawn, like a magnet to its pole.  The aching hole in my heart keeps finding reasons to go back to New York City and be filled again.  There are a couple other places I love too.  The Boundary Waters of Minnesota, too, where I was conceived and kept returning to, year after year during my childhood.  The wild coast of Oregon, the State where my sister lives.  She brings me back to the coast each time I visit her.  Other places I’m not so familiar with, and there are still one or two others where friends live, but whose homes I have never seen.  There is plenty for me to discover in the land of my birth. Where to go on this long trip back home?

My wonderful, strange friend “Serendipity” had already stepped in for me, months before I had any thoughts of going back to America. I had just come back from the States, where I attended both my sister’s funeral and that of my friend’s father. I wasn’t really looking to return to the States. But Serenditpity came in the form of a phone call a couple months after my return.  My timeshare company wanted to know if there was some location my husband and I would like to travel to.  “What? Didn’t you know?  My husband had a massive stroke over three years ago and can’t travel!”

That was one of the biggest losses I have had to face since Peter’s stroke. He and I were such good travelers, and he was never as interesting or stimulating as when traveling. We fed off and nourished each other’s curiosity with our contrasting insights and information.

“Oh – I’m so sorry,” the voice on the other end said.  After a pause, “Maybe YOU would like to get away somewhere.  Is there anywhere you would love to travel to?” I couldn’t think of anywhere.  All there was now was family, and I didn’t need a timeshare for that. A twinge of self-pity threatened to tug at a corner of my heart.  Then, just as I was about to hang up in disappointment, I remembered New York City.  “Well, there is New York City, but you never have any openings there.”   

“Let me just check,” the agent said.  “Ah, there is an opening at a hotel called The Manhattan Club for the first week in February.  Would you like that?  It is a suite that can sleep four.”

“Yes!” I said, with no questions or doubts in my voice.  So, months before Peter died, the seeds of a trip to the US were planted.  I would be a tourist again in the city I spent ten years of my life in. As soon as Jenna asked her question about what I would do, I knew I would make a long trip out of this week in New York City. I also knew just how I would do it. I had already found friends, people who had supported Peter and me throughout Peter’s entire illness. These friends had recently asked if they could travel with me to New York City sometime. And the rest was there, sitting in front of my imagination like a trayful of goodies.

America seems to be slipping away from me, the longer I spend away from it.  People watch TV differently. Now at least those of us with internet have Netflix and Prime, no matter what country we live in, but what do people in America watch? They eat different things too than they used to. What would I discover in the culinary landscape of America? New words keep creeping in, new expressions, new fads, new phobias. I am way out of touch with the bureaucratic side of America. I don’t have to deal with Obamacare or group health plans, thank God. But I wonder how other Americans deal with getting sick. How do they face longterm illness like I had just spent four years dealing with, as I became acquainted with the German system? By now, I know more about how Germans live than Americans, the people Germans keep asking me about. The longer I spend away, the less I know.

And then there’s the political scene. What on earth is going on in America, that a man like Trump can be President? How could the evangelical Christians ever support such a person? I consider myself an evangelical, but I sure don’t share any values with this man. Or at least, I don’t think so, but then we don’t get Fox TV in Germany. Still, I get enough information to ask how myself how Christians can explain their support for the current President and administration. It was time for a lengthy visit.

February is a strange month to travel, one would think.  It’s dark and deathly cold.  But nothing beats the winter blues like traveling, and where do many Americans travel to in the winter?  To the South!  It was clear to me that since the week of my timeshare stay in New York City was the first week in February, I would follow that week up by traveling to the three peope dear to me who live in the South.  Everyone was excited at the idea of my coming, so I planned a trip lasting five to six weeks. I would not travel north this time to my brother in Minnesota. I had seen him last year at our sister’s funeral, and Minnesota is infamously cold and snowy in February. It would have to be the South – and New York, which is cold enough.  

From New York I would fly down to Austin, Texas and visit my cousin and his wife.  From there I would somehow get to Louisiana and visit an old friend from college.  And I would travel by some unknown means from there to Tennessee to visit my brother Jason and family, who recently moved to Tennessee from California and were having some problems with their adjustment.  Then I would travel back to New York City from Tennessee and have plenty of time for family and friends.  I checked Google Maps.  The distances between  each of these places were quite far, but doable, either by renting a car or traveling by bus.  Why not?  I could take the Greyhound bus, just like Simon or Garfunkel does with Kathy in that song about being lost and looking for America.  That kind of fits me, I thought.   I feel lost too, and am looking for America.

But first there was Christmas to get through.  One piece of advice I got after Peter’s death was, “Whatever you do, don’t spend this first Christmas alone.  Go visit someone in your family.”

By the end of October, the days were getting cold and the nights long.  I sat in my living room, imagining Christmas.  Would I buy a tree?  No way!  Why would I lug a tree from my car, spreading needles and scratching myself, spreading pine resin on my fingers,  just for myself?  The idea of decorating a tree and then sitting there all by myself to look at it made me so depressed, I knew I could not spend Christmas at home.  I also missed my only other living sister Naila, who had not been able to come to the funeral.   I hadn’t had much contact with her since we’d seen each other in Minnesota after our sister’s death the December before.  Soon after her return home, a double whammy of bad news came to her.  Both she and her husband had cancer!  Naila ovarian and Sam prostate cancer.  And both would need  treatment.  Naila went in for six months of chemotherapy, and Sam radiation therapy.  Naila was told she needed to take time out from the world and go into a long hibernation of several months.  She was too vulnerable to infections.  She was also exhausted from chemotherapy.  We wrote, but she didn’t want to share her burdens over the phone. 

I risked phoning her on that long, cold night in October.  Chemotherapy would soon be over and she was feeling stronger.  Yes, she was up to talking now.  “I miss you, Naila,” I said.  “I wish I could just fly out there and see you for Christmas,” popped out of my mouth.

“Why don’t you do that?” she said.  “We’d LOVE to have you!  I just saw a commercial on TV from Condor Airlines.  It looks like they have cheap, direct flights from Frankfurt to Portland.”  Naila lives in Portland.

And so I booked another flight – to Portland, Oregon, but it wasn’t direct.  I’d have to fly to Seattle first.

In November, my dear friend Miriam from Seattle came to visit me for three weeks.  Unable to come to be with me for the funeral, she offered to come and keep me company for three weeks.  What a wonderful buffer that was from the pain of being alone!  We went on a couple of short trips to nearby tourist sites, did Thanksgiving together, another hurdle I needed to somehow clamber over.    We talked and cried nonstop for three weeks.  And then, before I knew it, it was time to fly to the States. 

Going to Oregon for Christmas was the perfect thing to do.  Both my sister and her husband were feeling pretty good by the time I arrived.  I was a caterpillar cocooned in familial warmth.  My nephew Blair, living for the time being with his parents, is a fabulous cook and we were treated each evening to feasts.  The Christmas tree was decorated when I arrived, and everything was as I remembered a Christmas or two in the past, spent with my sister.  But there were stabs of pain, too.  Remembering a Christmas and other visits to Oregon with Peter stung.  He loved Oregon.  We had sat on the living room couch, opening Christmas presents together. Now I had to sleep alone in the same bed we both had slept in on our many trips to Oregon.  Mornings, we would gaze together at Mount Hood, sometimes peeking through our bedroom window, sometimes hiding from view.    

Mount Hood is showing itself this morning!

Together we discovered a popular Oregon activity – tide-pooling. On several vacations at the beach we would head for the rock pools formed at low tide, identification book in hand, identifying and marveling over the sea stars and anemones.  Sometimes we would see little crabs climbing miniature rock cliffs. We had enjoyed the seagulls and pounding waves together.  Sam and Naila’s home is our son’s American home, and Oregon became our home away from home, after my parents had both passed away and their house was sold.

But there is comfort in shared sorrow.  There is healing in pain that is shared.  I felt warm and secure, spending Christmas with my family.  The warmth spread over the pain like a balsam.

I had asked Naila if there were any choral concerts in Portland during the Christmas season we could go to.  I love the Christmas concerts in Germany, and was singing in several myself with my choir and vocal ensemble.  It would be nice to partake in some of the lovely things of Germany in Oregon, I thought.  “There’s the Festival of Lights,” my sister said.  “For two weeks or so before Christmas, an abbey in Portland puts up loads of Christmas lights and choirs come from far away to sing in the chapel.  We could do that.” 

Christmas lights at the abbey.
Christmas lights at the abbey.

We did that.  We went out in Portland drizzle to see the lights and hear some music.  That was perhaps my first truly touristic American experience this trip.  The abbey gardens were giddy with lights of every color and shape, everywhere you looked – overwhelming after years of pristine white lights in Germany.  Almost all the Germans I know consider colored lights to be garish. 

And stations, like stations of the cross, with recordings recounting the Christmas story.  The choir we heard wasn’t very good, in my estimation, but at least they were singing Christmas music.  And I was doing something Christmasy with my sister, who a month before this could not have left the house. 

I baked their favorite Christmas cookies for them.  We went to church together, and we watched TV together.  We discussed politics.  Here my sister and I were of kindred minds.  Her entire family and I felt alienation from the current political situation in Washington. I discovered something in this alienation that I hadn’t expected. Naila and Sam, also evangelical Christians, feel alienated from the political attitudes of almost all the people in their church. They say this sense of alienation is not unique to them. Evangelicals all over America feel politically estranged from other evangelicals, something that never existed before the last election. The estrangement is so severe that people even feel unable to talk about their opinions with one another.

So Naila keeps company with Rachel Maddock. “Let’s watch Rachel Maddock,” she said. “She explains it all better than anyone else.” We watched Rachel Maddock and fretted together. Here, even on the political level, we were able to share our feelings. 

I did get sick while in Oregon. I came down with sinusitis and by New Year’s Day really needed to be treated badly. “I’ll take you to urgent care,” Naila said. I had to ask what urgent care was. Another new development since I have lived in the States. A pretty cool thing, actually. You can go there at any time, even on New Year’s Day and be treated, generally by a nurse practitioner. There is no such thing as a nurse practitioner in Germany, nor are there urgent care clinics. Naila’s urgent care clinic accepted my German insurance card, so all was well on that front. And with medication, my sinuses were also soon healed.


I had booked an airline ticket I could change.  Perhaps, if all worked well, I could also visit Miriam in Seattle at the end of my trip. 

Things did work out, and I rode the Amtrak train to Seattle in the New Year.  Miriam greeted me at the train station, just as I had greeted her at the Cologne train station just two months before. 

Miriam lives on a island off of Seattle, which to me has always sounded very romantic. I was so curious to see how she lives! Of course,you have to ride a ferry boat every time you go to the mainland, but the ride is only fifteen minutes. Miriam tells me that the wait can be up to an hour and a half, however!  This island is lush with majestic pine forests and huge ferns. 

There are so many forests, human settlement feels like something of a rarity.  On this island, Miriam and her husband live close to nature.  I thrilled to see an everyday occurrence for them – deer grazing in their garden.  Beautiful blue birds and squirrels came to feast on peanuts Miriam’s husband feeds them every day. 

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Dear grazing in the garden.

This is America too, the America I love, just like the Oregon coast.  Here I saw the Puget Sound, dotted with so many islands, so peaceful it reminded me of a lake in northern Minnesota.  When I am out in nature in America, I feel in touch with myself, with my family, the animals and all the other people living in America.  Peter had never been here before, so for the last part of my journey I felt less pain, enjoying this beautiful landscape with my friends.

Peaceful Puget Sound

Watching the Puget Sound in Washington with Miriam, I remembered also having stood a few days before on the Oregon Coast. There, in contrast to the still waters of the Sound, I had experienced the foaming, turbulent waves coming from the same ocean. Even more than the calm water, tamed by the many islands in the sound, it was the surf that touched me the most. The surf, pounding and crashing onto the rocks, transforming into dazzling waterfalls, calmed my soul.

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The wonderfully wild Oregon Coast.

I had gone for long walks along the beach each morning, allowing the constant movement of the waves to move my turbulent heart. I would stop and feast my eyes for minutes at a time, gazing at the powerful waves.  I missed Peter, but also felt the peace of sensing that he was perhaps somehow standing there with me.  Perhaps he was also able to see the perfect rainbow given to me one morning, a promise of happier days to come.

A perfect rainbow near the beach.
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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)

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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.

Rubies in the Rubbish – Conclusion

14 Saturday Dec 2013

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It’s about ten days before Christmas as I write this, and I’m in the middle of Christmas parties, baking, shopping and all the usual pre-Christmas rush.  And yet, my thoughts are still in Egypt, as I reflect on what this trip, finished more than a month ago, means to me.  I’m still hearing from Reda and Hanel through Facebook, and I read whatever news I come upon that pertains to Egypt.

I sit in my bed every morning, as before, read the Bible and devotional books and pray, but I’ve added a new element to my prayer time.  Sometimes I look at the pictures of Jesus and Mary that Reda gave me.  I think about Mary and what an open, compassionate woman she must have been to agree to mother the most compassionate of human beings there ever was.  I see myself as a woman like her in some ways, certainly with the same capacities.  If she was compassionate, I can grow in compassion.  So I pray for more compassion in myself.  I look at the picture of Jesus, imagining the depths of love, compassion and power contained in this man.  He is, after all, resurrected from the dead, and has the power to resurrect all that is dead in me.  I reflect on the verse in Colossians, “For you died, and your life is now hidden with Christ in God.” (Colossians 3:3)  Surely this is the secret the sisters possess in order to live in such peace and joy.  They live, not caring that much whether they live or die, because they know they have eternal new lives, hidden and protected in Christ Jesus.  They consider their old lives to be rubbish.  The sentence St. Paul wrote to the Philippians has taken on a deeper meaning:  “I consider everything a loss because of the surpassing worth of knowing Christ Jesus my Lord, for whose sake I have lost all things.  I consider them garbage, that I may gain Christ and be found in him, not having a righteousness of my own that comes from the law, but that which is through faith in Christ.”  Philippians 3:  8-9.  Paul goes on to describe more of the life I have seen in these sisters:  “I want to know Christ – yes, to know the power of his resurrection and participation in his sufferings, becoming like him in his death, and so, somehow, attaining to the resurrection from the dead.”  Philippians 3:  10-11.

I feel some embarrassment writing this, but I am unsure where my embarrassment comes from.  Is it something within me, or am I reflecting an embarrassment burdening our modern Western society?  These words sound so old-fashioned, so far from the way we in the West live our lives.  But it is precisely because this way of living has become so rare that my time with the sisters and their friends is so precious to me.  They have influenced my thinking and my approach to God.  The time I spent there continues to influence how I prepare for Christmas.

Being there was good for me in so many ways.

I had the chance to live around Christians whose very lives depend upon their faith.  They rely on God for everything.  They will not give up their faith, even if it costs them their lives.  Not only that, they refuse to open themselves to hatred or revenge.  They will continue to love and serve other Egyptians, even if some Egyptians hate them enough to kill them.  They remain open, loving and tolerant of differences.

It’s not only the sisters who live such courageous lives.  It’s also people like Reda and Marleen who refuse to join the western, materialistic mindset, even Mary in the gift shop at the airport.  Copts don’t date, they don’t have sex before marriage, and they don’t divorce.  I can imagine many people I know who feel trapped in their lives.  They long for a better partner and they recoil at the thought of a lifestyle that they consider restrictive.  They might consider this Egyptian mentality rigid and reactionary.  But I don’t see the people I met as trapped.  To the contrary, I think they’re onto a secret of happiness – sticking with relationships, even when they’re difficult.  I saw sisters complaining about other people to Sister Maria.  But they try again the next day.  At the Salam Center, they don’t teach putting up with abusive behavior either.  That’s not it.  There, they teach people how to live constructively in relationship.

Living with radiant, cheerful Christians who are true to their faith, to their principles, and who love, showed me that there are groups of Christians who are really good examples of the faith..  They truly live in, for, and love Christ.  This has opened me up to looking for more of the same positive faith here in Germany, where so many people focus on the weaknesses of Christians.  That’s what makes it in the newspapers and on the internet, and that’s what people talk about.  They talk about bishops who build lavish homes instead of humble Christians who live generous, joyous lives.

At the Salam Center I had a positive experience of life in community.  Sister Maria runs the center with a steady, yet gentle hand, and not as an autocrat.  She listens to the complaints and arguments of others, and they state their opinions and grievances openly.  It felt good to be around her and the other people I encountered, day after day.  It felt good not to run away into ever new people and experiences.

I valued my own good qualities because I saw them as valued by those I encountered there.  For instance, people there kept talking about my kindness.  This is something I’ve never particularly valued.  I’ve valued competitiveness more, because that’s what our society values.  But seeing my kindness as something they treasure helped me to treasure it too, and to work towards developing more kindness and dropping the competition.

In the same way, I valued my profession as a teacher of English as a second language, because I could see that my teaching skills were openly valued there.  People could see and hear what I did in the classroom and they expressed approval and sometimes even admiration.  This helped me stop taking what I do in the classroom in Germany for granted.   In Germany, I think native speakers of English who teach their language are seen as people who do this for lack of having found anything more lucrative to do.  I remember reading an interview with the American crime novelist Donna Leon, who lives and sets her novels in Venice.  She said that in the beginning of her time in Venice she was forced into (horrors!) teaching English in language schools.  It took doing it in Cairo and seeing how much the Egyptians value this to place a high value on what I do.  These days, I’m looking at teaching as a wonderful career, and I see the logic and the great sense of purpose I can find in being a teacher.

I loved the openness and candor of the Egyptians I met.  I have found this each time I’ve been in Egypt.  When I meet warm people, there is a synergetic effect – I warm up!  These Egyptians are unafraid of eye contact or of showing who they really are, even if it is their softer, more vulnerable side.  Their heroes are godly people from the past and present, not rock, movie or sports stars.  The people I met are unafraid of admiring the character qualities they find in people, and they even want to emulate this!

Sometimes they would walk right up to me and say things like, “You have beautiful eyes.”  “You have kind eyes.”  “You’re beautiful.”  “I like you.”  I responded to their openness, and it opened me up.  I smiled and related to everyone from my heart, because that’s how they related to me.  I’ve tried bringing this back to Germany.  I recently said to a casual friend of mine as I said good-bye, “You’re so sweet!” He smiled and seemed delighted with what I said.  I hope he was.  In Germany people don’t go around telling each other that they’re sweet.  At a Christmas party I smiled long at another woman, looking directly into her eyes.  I don’t know her terribly well, but I like and respect her very much.  She smiled back at me.  We weren’t making passes at one another.  I wouldn’t have smiled at her like that if I hadn’t experienced the same thing in Egypt.

At the Salam Center, I saw the distractions we have in the West as simply that – distractions.  They do not improve our lives.  I have a deeper desire to concentrate on the essentials, on the important things like love, and to let the other things drop.  Living in that environment helped me to see which activities are distractions and which are life-bringing.

I have rarely felt such supreme happiness as I felt while at the Salam Center.  Sharing my gifts and my self with people who valued this made my days!  And I shared my happiness with God, talking about this in my moments alone with God.  I didn’t care about all the deficits at the Salam Center, things like broken doorknobs and wading through sand to get into the convent, feeling that joy, that happiness.  That is an essential.  That is something worth more than gold.  Well, you can find it at the Salam Center.

At the Salam Center, I felt like I belonged to a group, and that this was a group I wanted to belong to.  I respected their values and even shared most of them.  Those I didn’t share, like the kissing of icons, I could at least understand.  In this community I felt completely accepted, desired, and valued.  What can be better than that!

And so, here I am now, living again in Germany, profiting from the treasures – from the rubies I discovered in a center near a rubbish heap.  These treasures have the ability to enrich my daily life.  They also create a hunger in me for more.  Insha-Allah, Lord willing, I will return to the Salam Center, not only to share more of myself, but also to receive more of what these marvelous people have to share with me.