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.