“If you put me here I will block the aisle,” Brian said angrily. I looked around for another place but there wasn’t any better place to put the wheelchair. It wasn’t that people would get upset with us that we were blocking the aisle. The issue was that Brian felt totally exposed and conspicuous sitting out there alone in the aisle. People definitely stared at Brian from the moment we entered the church to the time we left. Brian and I got something out of the church service so it was worth the embarrassment.
The time church offered a respite from the demands of our daily lives. It was a quiet time to mediate and contemplate. We could forget, well almost, that Brian was dying. Brian and I never talked about God but something about the service and being in church touched us and brought us closer together. I can’t explain it any better than that. That feeling would last for a few hours after we left until the demands of the terminal illness ravaged the feeling of comfort.
Time passed. The chronic illness group meetings ended. Brian’s condition worsened. The memory of the nourishment of the group faded. Oh I stayed in touch with the leaders of the group but it didn’t help. Nothing helped ease the suffering, pain and anger. Generally I was too tired to be angry. Every day was an incredible struggle physically and emotionally. I felt like a lone oxen pulling the wagon, loaded with Brian, the children, pain, sadness, anger up the steepest mountain known to mankind.
I was just surviving and I felt lucky to be doing that. My old unhealthy self, despite my best intentions, had taken control. With all of my resources being tapped to manage my daily life I did not have the strength to do anything but engage in survival mode. The abyss was looming darker, colder and blacker than ever.
Eventually it was too difficult to get Brian to church. We stopped attending. No one seemed to miss us.
Brian would move from his bed to his special chair in the corner of the TV room to the bathroom and back. If I had to leave the room, I would turn on the baby monitor which sat on the table next to him taking the other monitor with me. He was awake asking for things constantly during night. Occasionally I would try to take a nap during the day. Just as I dropped my head onto the pillow and started dreaming of my escape I would hear a noise over the intercom.
Anxiety, anger, hostility, fears, resentment ravaged our days and our lives. Trying to shelter the children from the anxiety, anger and hostility and take caring of Brian’s physical needs was my job along with the typical daily chores. Brian’s job was to get through each day. As each day passed his anger grew and my resentment grew proportionally. If only we could talk about it! But that never happened. Who knows if that would have even made any difference.
The number and frequency of visitors decreased in direct proportion to the increase in the symptoms of the disease. At the end Brian’s only personal contacts were the children, me, an occasional visit from his sister and her husband and the weekly visit from the hospice nurse. Even the children started to avoid coming home although I would not realize that until much later.
I really didn’t want to interact with Brian at all that day. For weeks now I so wished I could avoid him but I couldn’t. As I entered the family room that morning, Brian looked at me with such hatred. I looked back at him with an equal or greater amount of hatred. I literally had to force myself to be in the same room with him that day. I wanted to scream at the top of my lungs, run away, and yell that I hated Brian, God, life and everyone else who is not going through what I am going through. “God I hate you,” I remember saying to myself. I screamed inside my head, “How long is He going to torture us?” and “I can’t take this anymore!” My well of coping mechanisms had run dry. Brian couldn’t’ talk but I could read his eyes and feel the hatred that was spilling out of them. After our initial interaction, I tried to avoid meeting his eyes as I was afraid that he could read the hatred in my eyes as well. I used to cope by closing my eyes and imagining that I had ran away and was living alone in a cottage on the beach in some South Pacific island. That fantasy couldn’t even give me any relief by this time.
“I can’t make it through even one more day. I don’t deserve this! I hate my life! I hate God!” were some of the things I screamed to myself that day and for many weeks before. Every pore of my body oozed hatred. Brian and I were trapped in a tomb out of which the air and light were being slowly drained until the time would come that we would suffocate in total darkness.
No matter how either of us felt or what we wanted to do the matters of daily living had to be taken care of and so it was with this particular day. I had just settled Brian into his lift chair in the TV room when the phone rang. I was surprised to hear it ring since no one ever called our house anymore. I answered it. “Hello” I said into the receiver. The voice on the other end was unfamiliar and cheerful. It had to be a wrong number. “This is Deborah from the church. I am new the new associate pastor and I realized that we have been remiss in visiting our sick church members. Would it be all right if I came to visit you right now?” she said. I automatically said, “OK.” I regretted it as soon as I had uttered it but I had already heard the receiver on the other end click. I was definitely not up to having a visitor. I had no energy to talk to anyone especially not a complete stranger and especially not a minister. Brian couldn’t speak at all.
About 30 minutes later the doorbell rang. I groaned. This woman literally burst into the room. She was vibrant, alive, upbeat, full of energy and smiling from ear to ear. I was offended. Doesn’t she know Brian is dying I wondered to myself. Brian and I immediately exchanged a look but not one of anger or hatred. That was at least refreshing.
She introduced herself to Brian and tried to shake his hand. Good Lord I thought this woman is an idiot! Why would she try to shake hands with him? She obviously didn’t know anything about us or our situation. Why was she here then? If she sensed my hostility she didn’t show it. She seated herself on the sofa between Brian and me. I didn’t listen to what she was saying. I was just waiting a polite amount of time before I could ask her to leave with the excuse that Brian was tired. I was determined to get her out of the house as soon as possible.
Was she actually doing that? I can’t believe she would do that! I didn’t notice she had it with her when she came into the house! She was actually reading to us from the Bible. I don’t remember how long she had been doing this before it kicked in – my awareness of the words she was actually speaking. “I hate God,” I blurted out. I looked at Brian and he had a look of shock on his face – to put it mildly. Brian chastised me with his eyes.
Deborah didn’t skip a beat, “That’s OK. Don’t be afraid to tell God you are angry at Him. He can handle your anger. He won’t punish you. He loves you,” Deborah said. I think secretly I had been afraid to say that out loud for fear that God would punish me. But wasn’t I already being punished? Could it get any worse? The obvious retorts to Deborah’s statement popped into my head – He has some way of showing love and Maybe He could love me a little less. But I didn’t say any of this out loud.
Deborah turned the pages of the Bible. She started reading some of the Psalms – the ones where the authors are calling out to God in anger because they are suffering or feel abandoned by God. I don’t remember the exact Psalms. I have never been much of a Bible reader – then or now. The words of those Psalmists struck a chord with Brian and I. I connected with them and their anger over their suffering and at God. They knew or had known the depths of despair that Brian and I were experiencing and worse. As Deborah read, I felt a huge surge of relief and gratitude. We are not terrible people because we were filled with anger and hatred toward everyone and everything including or especially God. She read to us for a little while. Those Psalmists expressed my anger and despair better than I ever could. They survived their trials. Deborah showed us that it was OK to be angry even at God. God understood. He didn’t abandon the psalmists. He was with them in their darkest hours.
Deborah left. Brian and I looked at each other in amazement and relief. Deborah reached into the depths of our despair and lifted us up. We were both so desperate – so pushed beyond our limits. I honestly don’t know what would have happened if she had not come when she did. When she left she left behind some of the solace and peace she had brought with her. I felt it when I first met her at the door. Of course the anger and suffering would go on but it never again reached the depths of despair it had that morning. As write this I am acutely reminded that I have known the depths of despair. Words are truly so inadequate to describe it. The blackness surrounds you. It clings to you like saran wrap. Eventually there is no air. You slowly suffocate. On that day I think we were both close to taking our last breath. Deborah tore an opening in the wrapping. You will laugh. I want to laugh at myself. I hesitate to say this lest I be labeled a nut case. I have to say it. An angel visited us that day and rescued us from the depths of despair.
