Sunday, our second full day in the City, we go to church. We are all committed Christians, and finding a church we may have heard about as far away as Germany becomes as much a part of our touristic experience as any other. In preparation for this trip, Johanna mentioned a church I had been to once before with Peter, Redeemer Presbyterian Church https://www.redeemer.com/ on Park Avenue. It has the reputation for having good, solid theology, a church that thinking people can go to and be challenged by. I opt for the classic service because the time works well for us, so we go there together. Timo wants to go to a church where young people would feel more comfortable, so he and Patrick go to Hillsong Church. https://hillsong.com/nyc/manhattan/
At Redeemer Presbyterian Church, I notice that there is not a single black person in the entire congregation, but there are many Asians. There are also a few families there. The music is definitely classical, with a string quartet and old church hymns. It is the first Sunday of the month, so there is communion. For the communion, ushers come to us in our chairs, serving first bread and later grape juice.
After the service, Johanna asks if the way communion was served is the American way. It is not necessarily, but it is the reformed/dissenting church way, the way they usually do it in my Baptist church in Cologne too. But Johanna belongs to a Lutheran church, where everyone walks to the front of the church, and they stand in a circle together. “I don’t like this passive way of doing communion,” she says. “It’s so impersonal, perfunctory.” I ask her how much she understood of the sermon. “I got the gist,” she says. This was not a good choice of church for Johanna. As for me, it also feels a bit dry, but at least it is not offensive to me theologically. I have heard many cringe-worthy sermons in my life.
Johanna meets Patrick and Timo, and I separate to do some shopping. But we do talk on the phone before we part. Patrick and Timo loved the services they attended.
I have arranged to have dinner with my sister Beth and niece Gillian. I want my German friends to meet more of the English-speaking people in my life. Beth is the sister my sisters and I adopted, and she adopted us, at the time of the marriage of my sister to Beth’s brother. Gillian, living in Australia, has never been able to meet Beth, who has never been to our big family reunions, although most of us we have met up at smaller gatherings. But Gillian just happens to be in New York on business this week, and we have arranged to meet. The logistics aren’t all that easy. Beth has difficulty walking for more than about a block. Gillian has celiac disease and can’t tolerate gluten, but she is hoping to eat Italian food. The Italian restaurant Beth recommended has no gluten-free options – I went there and asked. So I go online, looking for restaurants in the neighborhood that have gluten-free pasta. I find one, the Serafina Osteria. https://serafinarestaurant.com/serafina-italian-restaurant-osteria-new-york
This is good news, but Beth tells me she can’t walk all the way to the restaurant. I call the restaurant and find that they deliver. We eat in, “at home”. After all, we are staying in a sort of apartment, complete with dishes, cutlery and wine glasses. Gillian brings wine. Beth brings us beautiful long-stemmed roses.
fresh flowers for our night in
I organize more dishes, cutlery and glasses. Beth and Gillian, and my Germans all meet for the first time, in our apartment. We eat a delicios meal at home in peace and quiet, a rare thing in New York City restaurants, and laugh and talk, communicating in a language that doesn’t come very easily to Johanna or Patrick. Timo blends right in. After dinner, we watch the super bowl together on TV, the same activity millions of Americans across the country are doing in their homes too. American football is not a German sport, but Patrick loves American football. I am no football fan, and know very little, so my German friend Patrick explains the moves of the game to his American friend.
We wake up to another day of frigid temperatures in New York City. New York is much colder than Cologne! But we will not let a bit of cold weather deter us from our plans. My friends enjoy a breakfast of bagels and coffee. I eat cooked oatmeal, the same breakfast I always eat in the winter. We put on our long underwear and head out for Central Park. Central Park turns out to be my favorite part of the day, perhaps the highlight of the week, because of a couple of wonderful discoveries. We see lots of squirrels scurrying throgh the park, but one in particular catches our attention. It runs back and forth between the ground and its burrow in a hole in a tree. I love it – nature in New York! This squirrel knows nothing about rental prices in the city or gentrification. He lives the same lifestyle squirrels have been living for thousands of years, and it’s comforting for me to see this in Central Park.
This squirrel feels right at home in Central Park!
The other discovery is a community of cardinals in the park. My last trip to New York City I saw a cardinal and thought it must be a rare occasion, because the only birds I usually notice are sparrows and robins. But here there must be twenty of them flitting around. What a wonderful aesthetic experience to see flecks of red hopping around the ground, then darting into the air and back down again!
One of manycardinals
On we march southwards, through the city. It is only noon, and my feet are already tired, and all we have seen is Central Park. We glimpse at the ice skaters at Rockefeller Center, and walk into St. Thomas Church and witness a wedding in St. Patrick’s Cathedral. I love St. Thomas Church and walk in there almost every time I am in New York City. I once went to an unforgettable Christmas Eve choral service there. I love their boys’ choir and the liturgy of the service. But it is my first time in the St. Patrick’s Cathedral. I am not Catholic, so never found a need to be inside this church, but Patrick is. I am impressed by its size. Surely it must be the larget Catholic church in America, I think. It isn’t, but it is the largest in New York City. We walk past the New York Public Library. This is another place I have never set foot inside, but I have been told it is a worthy tourist attraction, its lobby so beautiful, you can rent it for weddings – for upwards of $60,000! https://www.nypl.org/space-rental/your-event
If only my Peter had seen this place, is the main thing I think, walking around the beautiful rooms with carved oak walls, golden molded ceilings and gorgeous masonry. This would have been heaven to my husband, who loved books – and maps – so much. He used to spend hours at a time, just studying maps. Once visiting friends in England, they drove us to visit a town none of us had been to, but they thought they knew the way. We would have gotten lost, had we followed their directions, but Peter assured us, he knew the way. He did, and they marveled at his sense of direction.
The NY public library has a room dedicated to maps. I mourn my husband as I marvel over the most amazing globes I have ever seen.
One of several amazing globes at the NY Public Library
Map room at the NY Public Library
A reading table at the library
On we go, southwards on Fifth Avenue ever since Central Park. By now it is a bit late in the afternoon, and we are all feeling the effects of our long hike in our legs and feet. Now we are headed for our last destination, the Rooftop Bar at 25rd Street. A friend of mine in Germany told me about this place, not written up in the tourist guides, but known by many young people, including her son, who spent a semester at a language school near New York City. It turns out that there are several rooftop bars in New York, but this one seems to attract mostly young people. That’s what we see at this one at 230 Fifth Avenue. https://www.230-fifth.com/ The interesting thing about this place, to me, is the heated plastic igloos where you can sit and enjoy the view.
Empre State Building, seen from the Rooftop Bar at 230 Fifth Avenue
An igloo at the Rooftop Bar
We drink a cup of hot chocolate for $10. We have to hurry, because the bar closes at 5 pm. The hefty price is worth it. We leave, inspired and strengthened for our return home. We have seen enough for the day.
Two hours later, friends of mine join us at our suite. We have a drink together, and head out again for dinner at Der Krung, a tiny Thai restaurant only New Yorkers would know about, it is so far west of Fifth Avenue. Because of its location and tiny size, the prices are reasonable. It’s fun exploring New York with New Yorkers. I enjoy introducing my German friends to friends from New York. I am in the middle, part of each culture. This must be symbolic of who I am. Am I a bridge between cultures?
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.
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.
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.
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.
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.
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.
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.
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.
Acceptance. A key word in the twelve-step programs. I continued going to my twelve-step group, the one I’d been going to for years.
Years before this all happened, I had been so fixated on fixing my husband I couldn’t find a way to live at peace with my own life, or even know what my life without him was about. When I felt he was out of control, I was out of control. At one of these low points, someone told me about a twelve-step group, and I joined one. It was a struggle to learn to let go of this constant obsessing about my husband. Even after I had separated from Michael, it was difficult not to see everything as a project to fix him. If only he’d cooperate, I kept telling myself. Then our marriage would work! Twelve-step groups are all about taking responsibility for our own lives and letting go of the responsibility we take for others.
I worked at it, not terribly successfully, but I worked, and so did Michael. We reunited after a year of separation. During that year, I spent a lot of energy trying to find a way to stop focusing on him, but still, my thoughts kept returning to my longing for him to change. Now back together again, I was hopeful for a new future together. How much greater the shock and my inner outrage to be three months into reconciliation, and then for a terrible stroke to separate us more thoroughly than ever. Now I was technically living with a man who was in a coma, in the intensive care unit, fighting for his very life. I could talk all I wanted to him, but there was even less feedback than from talking to my dog. More reason than ever to obsess. My need to detach was more urgent than ever. I really, really needed to find a way to go on living, to find the strength to go on, to find faith, or I would go under.
My twelve-step group became one of my mainstays, and the prayer we say every week became a lifeline for me. “God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.” I needed to accept my situation as it appeared every day. And slowly, probably because I was truly desperate now, I discovered that I was finding the ability to accept my situation. My urgent neediness was a gift, making it possible for me to accept each new day with the challenges it presented me.
For most of November, 2014, Michael was in a coma. We lived in a constant cycle of high fever (central fever, they called it), high blood pressure, infections like pneumonia, and tremors. His body couldn’t regulate normal temperature anymore, so he had a constant elevated temperature – central fever, and this fluctuated wildly. They diagnosed the tremors as part of epilepsy. More medication now, this time to deal with the epilepsy. At one point, a doctor told me Michael possibly wasn’t waking up because they’d been over-medicating him. So they started experimenting with medications. He continued to have high temperatures and to sleep. I wondered if he would ever wake up again. Once he woke up for a couple of days, and even mouthed the numbers one to four for his speech therapist. The following day he responded to a visitor who came to see him. I was elated! But he fell asleep the following day after another bout of high fever and seizures. What was I supposed to accept? That he would never recover? Or insecurity, uncertainty?
All of the above. I didn’t know what kind of God would allow us to go through what we were going through, but I decided that the goodness I had experienced had a souce, and that this source was the God I had been following. I would continue to follow Goodness. Psalm 23 became a mantra – “Surely Goodness and Mercy shall follow me all the days of my life.” Well, I wasn’t sure they were following me, but I would follow Goodness. I said this to myself, but it didn’t feel as though there were any God at all in my life. Goodness was an abstract force for me, but logically the strongest force of all, one that I vowed to trust, no matter what. Even now, if I looked, I could see that there were good things every day – maybe a good meal someone cooked for me, a kind email, a beautiful sunset. I would accept and follow Goodness, with God’s help. I had no divine messages or feelings of being carried, or any sense of God’s presence, but I did find myself carrying on, somehow able to face each new day without falling apart. This was how I could accept the monstrous thing I couldn’t change.
I was also doing the things I could to help the situation.
I went to therapy. As with the twelve-step emphasis on acceptance that I was learning, I had been learning new ways of dealing with pain in therapy. The therapist invited me to look inside my body and identify where the pain manifested itself and to sort of sit there and hold it, watching it, allowing it to be there, also feeling my feet on the floor, following my breathing. In this way I learned that I could tolerate emotional pain and that it would leave, in its own time.
I began every day with what I call my “quiet time”. I read about persecuted Christians around the world and prayed every day for the one on that day. I read out of my twelve-step daily guide, and out of the Bible, focusing now on the book of Job, since it seemed appropriate to be reading about someone else who had suffered at least as much as I. Then I would pray and meditate for around twenty minutes, allowing whatever thoughts and feelings that came to be there. Usually there was nothing special that came, but now and then I had a helpful insight. I think the most helpful thing was just sitting there with God, letting God be privy to all that was going on. I accepted the tears or whatever confusion or lost feelings I had, and let God have them.
Writing my update/prayer emails also helped. It was good to record what was going on, and to get it out somehow. I didn’t like telephoning and having to explain myself over and over. But writing it in one email to a lot of people was a wonderful way to express myself!
One person on my email list wrote back to me, “You need to have a close friend come and stay with you for a while. You need female companionship.” None of my friends here in Germany had the time to come and stay with me. But my friend Nancy in the States had recently retired and was complaining that there wasn’t enough for her to do. I invited her to come and stay with me, and she accepted!
It was just the thing I needed, having her companionship. We rode the tram every day together to the hospital, talking nonstop in each direction of the half-hour ride. She bore the frustration and disappointment of seeing Michael asleep day after day with me. We did fun things like cook and bake together. We cooked for Thanksgiving and invited my German friends. We watched Sandra Bullock movies, since we’re both Sandra Bullock fans. Nancy was here when the famous Christmas markets in Cologne opened, and she bought lovely German-made Christmas souvenirs to bring back to her family. We prayed together, sharing our deepest thoughts and longings. Even now, more than a year later, I feel so much closer to her because of her time here with me. She still writes me beautiful, encouraging notes that lighten my heart and my burden.
On the day before she left, December 2, we both got an early Christmas present from God – Michael woke up! And he even responded to us, blinking yes to several questions we posed.
He stayed awake off and on for almost two weeks, giving me hope that recovery would indeed be possible. One of the doctors on the ICU at the university hospital went out of her way several times to help me. She even allowed Michael to receive high dosages of fish oil, something a friend told me about. There were several reported cases of people with severe brain injury who experienced amazing healing after receiving two grams of fish oil daily. Fish oil is high in omega 3, the same substance our brains are made of. Was it only coincidence, or was the fish oil really making a difference in Michael’s level of consciousness?
I’d been practicing prayers of gratitude and trying to stay in the moment in a similar way to when I work on a new piece on the piano. I spent my days looking for whatever I could be grateful for, and when my thoughts drifted into worry, I would try and come back to the present.
Michael was doing so well, he would be able to be transferred into a rehab hospital. A week before Christmas, he was transferred. The day after his arrival, he fell into a coma again.
Chris returned from abroad for Christmas, only to find his father mentally gone by the time the holidays began. On Christmas Eve, Chris and I went to church together, and then took our presents by taxi to the rehab hospital. Michael slept as we opened his presents for him.
During the hours apart from Michael, we enjoyed Christmas, eating great meals and enjoying each other. With Michael, we sat helplessly in the silence of his room, enveloped in surgical masks, paper gowns and plastic gloves. He was in quarantine until they could ascertain that he didn’t have any multi-resistant bugs. No more fish oil. The doctor at the rehab hospital wasn’t convinced it would help. He was afraid it would only give him a worse case of diarrhea than he already had.
I tried to see this as a time to keep focusing on the goodness of God, the things that I knew to be good, and to be thankful for them. I kept trying to stay in the present. During all of this, Michael continued to sleep. Would he ever be healed? The doctor didn’t think so. On two occasions he said to me, “I think your husband will probably look something like this for the rest of his life. You need to accept this instead of clinging to hope that he can be healed.”
I thought I had posted everything I’d written thus far, but when I went to post this, I found that there was a draft which I’d written several months ago and failed to post. I posted that entry just a few minutes ago. If you’re reading this all at once, remember that my scenes jump back and forth in time somewhat. The stroke was in October, 2014, and now it is February, 2016.
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Recreative Suffering
One of our family secrets that came out when I was well into my adult years was that one of my uncles, whom we nieces had long had the sense to stay away from, had a woman on the side. When my mother finally told the story, she moaned, “How could he do that to Alice?” Alice was my aunt, my father’s sister, and Muriel was Aunt Alice’s home health aide. “Here she’s hired to be there for Alice, and she goes and betrays her.”
We’ll never know whether Alice sensed what was going on, because she has long since passed away. Alice suffered short-term memory loss following a brain hemorrhage that almost killed her. She survived a good thirty years after her hemorrhage. The lively woman she had been beforehand never reappeared again, but still, a vow is a vow, and a person is a person, my mother and I thought. Maybe I had no pity for my uncle because I had seen some of his unsavory side. I certainly avoided being touched by him.
I’ve heard people on radio talk shows defending this behavior – not touching minors in private places behavior, but that of partners of disabled persons who seek companionship or sexual gratification outside of their partner, who is unable to give it. “Those left behind by their partners also have needs,” they say. “They shouldn’t be deprived.” Well, I thought, my uncle ought to be deprived of this Muriel and more.
Now that something similar has happened to Michael, I can well imagine what it must have felt like for Alice. Even if you can’t remember things, you can feel what’s going on. One can have memory impairment and still be very sensitive to what is going on at the moment. People with memory loss can also feel other losses as they occur or during the unexpected moments when their memories are triggered. We’re only kidding ourselves if we think our partners are oblivious to what is going on around them.
I sometimes feel needy for Michael’s affection. I remember times he used to stroke my hair or hold me, times we had sex, and there is an ache, sometimes sharp, sometimes dull.
At other times I stagger, as with a blow to my shoulder, by memories of things we did together. Today I remembered driving with Michael down some German Autobahn or other, on our way to having a good time together, listening to classical music on the radio or an audio book. We enjoyed each other’s company all the time, also on the way to wherever we were going.
There’s a stretch of highway that goes from Cologne to well into eastern Germany. “It’s almost all forest from here to Erfurt,” he said. He enjoyed that stretch. Once or twice we stopped at an outlet store on the way and bought clothing. I can see his driving style, quick, even jerky, confident, in a rush, but competent. “Rub my neck,” he says, and sighs contentedly as I rub the stiffness out of his neck.
And now I long to remember, to dredge up all the memories, to feel their vividness, even as they seem to fade away. I want to write it all down, to not forget anything, for they are all I have right now of the man I lived with for thirty years.
Would I want to run into someone else’s arms for sex or companionship? No way! Part of what pricks my memories now is the knowledge that I was ignorant of my blessings, all the while I was being blessed. I sat in the car and enjoyed Michael’s comments, the easy flow of conversation, but I don’t remember any gilded awareness of this being anything special. I found it awkward trying to massage his neck from my passenger seat. I enjoyed sex, and then enjoyed sleeping afterwards, cuddling into him, all the while wishing he’d reach out for me more often.
My brother told me the other day, “I can’t imagine the suffering you must be going through.” I agreed with him that I suffer. Then I thought to myself afterward, But I do get through the days, don’t I? My life is interesting, even now. So how exactly am I suffering this loss?
I feel it is important to record it, to examine it, not to forget that this man whom I married over thirty years ago is the person I miss, not just some general companionship or the feeling of being sexually aroused. For me what counts is the person behind it all.
The way I deal with this, what I try and do is, not to run away from the suffering, but rather to remember what we had and feel the goodness of it. As I look, I see what we had in a different light. In a way, my memories are recreating the past, making beautiful what were sometimes mundane scenes. They modify and make mellow the painful scenes, of which there were also plenty. But I’m seeing even the painful times through a different lens, and that is a good, heartening process that makes me feel good.
So the suffering has lots of goodness in it. It’s helping me to appreciate, to understand, to value.
Sometimes I am rewarded in the present tense. Yes, Michael is in some ways a different person right now than he was before. But he still looks at me and knows I am his Schöne. There are times when I go to visit him and he is alert. In fact, the good days are so frequent now that even his bad days are fantastic, compared to what they were a year ago. There is hope. I doubt he’ll ever be driving the car again, but maybe one day we’ll be sitting in the car again, on our way somewhere. Then I can ask him to rub my neck!
About a week ago I visited him and his hands leapt up into the air in a greeting of exultation. I had forgotten that gesture. How good to get it back! I remembered the words he always said. At the time, it exasperated me. He was always excited to see me, but his greeting just wasn’t like in the movies. No slow, dreamy, romantic soft gliding of his hands. With Michael it was abrupt. But now that it had come back, I treasured it. Then he reached for me. I bent down and he kissed me eagerly on the lips. His eyes looked hungry for more. He is also needy for companionship, I realized. He tried to pull me to him with his stiff arm and claw-like hand, bent with contractures. He stroked my hair. Before long, it felt like all my hair was in my eyes, but Michael was stroking it! A year ago he lay rigidly in his minimally conscious state. Now he was patting/stroking my shoulder. I stroked his arms, his face, careful not to lean into him too closely to restrict his breathing. His shirt was moist with secretions from his trach. No matter. We were sharing affection. We still love each other, after all these years. I love him in a deeper way than I ever loved him in the past.
Those moments are so wonderful, I almost think they’re worth the suffering.
If possible, I think the next phase was even more frightening and lonely than the two weeks I had just been through. After all, just days before, Michael had finally woken up and started to talk to us. I had found hope that he could recover. But when he started having violent tremors, combined with a very high fever, sky-high blood pressure, high blood sugar as well, and pneumonia, I felt on the verge of despair.
As soon as I complained about Michael being on a normal ward, the doctor decided to put Michael into the intensive care unit. I came to know this unit very well, because day after day, Michael just wouldn’t wake up. At one point, they put him in an artificial coma to see if that would lower his blood pressure and stop the tremors. It did, but they couldn’t keep him like this. In addition, he wasn’t swallowing well, and the doctor feared that the breathing tube going from his lung through his mouth, the same thing he had had in the previous hospital, could be causing the pneumonia. Having my husband in an induced coma was also no fun, but it was better than having him sleeping day and night, when he should have been awake.
The picture the doctors were forming of my husband didn’t help,either. The tremors turned out to be epilepsy, at least some of the time. How much new damage had occurred? In addition to all the other monitors, he now needed regular EEGs. One doctor said to me, “Your husband is a very sick man. He has an awful lot of fronts to fight on – the stroke, pneumonia, high fever, high blood pressure, epilepsy, and diabetes.” Another doctor told me not to expect linear healing. “Healing with stroke victims occurs in waves,” he said. “Look for patterns, tendencies, but remember that waves always go down before they come up again.” This was helpful advice, but with each trough I would tend to panic. Was Michael going to experience any recovery at all? Was he going to survive this? He wasn’t getting any better – in fact, some days the nurses would despair of finding ways to lower Michael’s fever, or for the blood sugar count to come down. They kept trying new anti-epileptic drugs to stop the tremors, but these drugs may have also contributed to his being asleep all the time. The “astronaut” tube food he was being fed was not good for his diabetes.
One day a nurse came to me and asked me if the living will we had said anything about resuscitation after heart failure. I had no idea. The wife of another patient in the ICU told me her husband had received resuscitation, and that was their mistake – now he was alive, but brain dead.
I went home and woke up the next morning thinking about the living will. Technically, from what it said in the will, I reasoned, we should be letting Michael die. It said he should be receiving no life-prolonging measures. That meant no oxygen and no tube feeding. What was I going to do? I didn’t want my husband to die! But they might make me do it because I’d signed that in the will!
I panicked. I was at home, all by myself, and started to scream and cry uncontrollably. I don’t remember the details clearly, but I must have called a friend to help me, because I knew I couldn’t be alone. She came right over, and I also called another friend who could spend more time with me. Together, my friends managed to calm me down, and one of them took me to the hospital to talk to the doctor.
The doctor told me not to worry, that they would do nothing without my permission, and that at this stage, when Michael’s life was at stake, he needed all the things he was receiving. This was not the time to think about pulling the plug, he assured me. I was tremendously relieved.
I kept writing emails every evening to all my family and friends, both in English and in German. It was always a struggle to write in German, knowing I would make many mistakes, and it was more difficult to express myself in German than in English. But the responses I got made it all worth it. “We’re praying for you,” was the tenor of most of the emails I got back. Sometimes I got emails from people I barely knew. People were passing my emails onto other people, onto strangers. Churches I had never heard of were praying for Michael. I made a rough estimate of all the people I had heard were praying. I came up with about a thousand people! My husband is well-known in the Christian circles where we live in Germany, and all the pastors he knows asked to be on my email list, and they forwarded my emails onto other people.
It was comforting to know that so many people were praying for Michael. But the prayers weren’t helping to wake him up. Day after day, I would go to the hospital to visit him, who remained day after day in the ICU. No change. The tremors were still there, and he was still out, dead to the world. Where was God? Why hadn’t God heard our prayers, given so sincerely before Michael went in for surgery, for protection? Even Michael, normally so fearful of doctors and hospitals, had gone into the hospital, trusting that all would be well. Was there a God at all?
It is very difficult to bear the pain of watching someone in what looked for all the world like a coma, wondering if this person would ever wake up. His face looked peaceful, and that was a mercy. But it was too much for my heart to take in, watching him. I longed for the days when life with him was so difficult. At least I had him, back then! If only I had appreciated him more. There was so much goodness in him that I couldn’t see because I had been so focussed on his glaring faults. Now I knew that I had no idea in those days how deep despair could go.
The emails I was receiving were mostly encouraging, but not only. Sometimes I felt the pressure of the spiritual expectations of my friends. “I pray that you receive a word from the Lord for each day,” one person wrote. A word from the Lord? I was wondering how the Lord could be so unkind as to let the worst imaginable thing happen. What could be worse than living in a coma for the rest of your life? Other people wrote, “I pray that you will feel God carrying you.” Some reminded me of the piece about the footprints in the sand. I thought of that myself nearly every day, but I certainly didn’t feel carried. I had never felt so alone before, even though I was being carried by friends, who kept bringing me food and offering to help in any way they could. That helped. But God carrying me? God felt far away. “I pray for strength for you to endure,” some said. I could relate to that prayer. I was somehow enduring. I prayed every day for strength to endure, and somehow I did. I couldn’t feel or sense where the strength was coming from, but I was enduring.
I decided to read the book of Job at this time. I found it comforting to read that he also felt alone in his misery. He also wondered where God was, and how God could allow this to happen. He knew that he was a righteous man, and so his fate could not be seen as punishment for his sins, as his friends so wrongly interpreted. I knew that Michael had many unresolved issues in his life, issues making life impossible for himself and for me, but I didn’t think any of his weaknesses warranted this calamity that had befallen him – and me. I was bereft, more than ever before.
But I kept looking for God – all day, every day, even when I couldn’t find any traces. One evening, though, while out walking the dog, I suddently remembered a line from a gospel song we used to sing in church when I was a teenager. “I don’t know what the future holds, but I know Who holds the future.” This was a thought that had come out of the blue. God had spoken to me!
I also remembered the strange thing that had happened to me on my wedding night. Just as I was getting ready to go to bed with my new husband, I heard these words, not audibly, but clearly just the same: “Married life won’t always be easy for you, but I will always be with you.” At that time, I had never “heard” God, and I was surprised by the message I heard, because I was looking forward at that time to a lifetime of “happy ever after”! What a comfort those words have been to me over the years, as I’ve discovered that life isn’t necessarily as happy as we would wish it to be
I endeavored to accept the situation, however disastrous I considered it to be, as it was just to let it be. Every day I prayed the prayer those of us in twelve-step programs say: “God, grant me the serenity to accept the things I cannot change, courage t change the things I can, and wisdom to know the difference.” I put all my energy and will into accepting this horrible thing that had thrown us off our feet. Actually, knowing there was no way to get out of this desolate place was a help. This was the place I had to live in now, and there was no running away. No more agony of too much choice. Now there was nowhere to run to, except into God.
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Writing this blog is proving to be a very difficult thing to do. The feelings of months ago come rushing back to me and I feel the pain and horror of those days, coloring whatever my present days bring me. I still often wish I could run away somewhere.
In my past, leaving difficult situations was my typical solution, albeit after long, long deliberation. I left Minnesota, where the winters were cold and desolate, and where I felt little warm approval from my strict father and passive mother. I hated Minnesota, with its strong cool Scandinavian influence. I escaped to sizzling hot New York City, where people are so expressive, they talk with their hands. But there, I fled an unhappy love affair, returning to Minnesota, only to leave it again, still dissatisfied with the environment I had grown up in. A brief stint in Boston, then back to New York, where I started to find myself in God, but then the opportunity to leave New York for Germany. I soon found Germany to be cool in temperament, and had the opportunity to leave with my husband for Brussels, where I lived in semi-contentment until our posting there ended and we were forced to come back to Germany. It took a broken elbow and a wrist that won’t quite let me hold my fork to my mouth in the German style, for me to come to terms with living permanently in this country. When things got too bad with my husband, I left him. But now I know there is nowhere to run to, and this is where God can catch me.
Sunday I was driving home from visiting Michael, listening to a folk music program on the radio, when they played a woman from Norway. Her voice stunned me so much, I almost drove to the side of the rode, just to listen to her music. Her voice captured the solitary state, the loneliness I so often feel in my soul. There was deep longing in her voice, but also warmth, as if she had also found hope, or even possibly fulfillment in the midst of her longing. That was exactly the state I found myself in. I thought, either this woman is longing for what Jesus can give her, or she is singing about Jesus. Suddenly I heard the word, “Jesus”, the only word I could understand, and I knew.
