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.”