Monthly Archives: February 2016

No Way Outa Here – 8

28 Sunday Feb 2016

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

No Way Outa Here – 6

03 Wednesday Feb 2016

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

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Recreative Suffering

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

No Way Outa Here – 5

03 Wednesday Feb 2016

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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.