My family has just had a very difficult and powerful week of struggle. For those of you who read my previous journal entry, on Monday, April 8 my sister went into surgery to get a brain aneurysm cleared up. The surgery went find, but afterward she had a devastating stroke. She was left with extraordinary deficits: her entire right side was left paralyzed; she lost her voice and ability to swallow; her eyesight was damaged to an unknown degree; her left side was seriously affected.
She went into the surgery a whole person with a minor sight problem from an earlier mild stroke. She came out almost ‘locked in’ to her poor body. However, her mind was and is intact. She has been fully conscious throughout the ordeal.
We have all suffered blackest anguish, most of all my sister. On the third night after her surgery, I went into the ICU and found her choking to death. She was suffocating in the fluid from her own lungs. I knew what was happening because at the age of twelve I watched my grandfather die of lung cancer like this.
I told the nurse, who was quietly ignoring her, probably because he assumed that nobody in that terrible shape would want to live. Because I intervened, she her lungs were cleared and she was put on a respirator. This was not a breathing machine, but it was an aggressive and obviously tormenting therapy.
I cursed myself before God for putting her through this. How dare I make this decision for her. And yet, somewhere deep inside me, I thought it was for the best. I just sensed, somehow, that she was asking me for this. I did it and I spent two days in anguish because of it.
Then we took the respirator off. She was given the last rites. I cried my eyes out, finally, as I described last time, going back to the hotel for another night of prayer and hellish suffering along with her.
The expression of anguish on her face was so terrible. Just unimaginable. The suffering–my God, it was simply beyond belief.
The next morning, instead of going into decline as we had expected, she smiled at me when I went there the second the doors were open to visitors. (Intensive care units, unlike the regular hospital, have strict visiting guidelines.) That smile was one of the great moments of my life.
Then the agony began in a new way. She had these horrible deficits. She was on forced feeding. But she was alive, her body was actually getting better. She began to be able to make noises. Soon, she was moved out of ICU and into the regular hospital stroke unit.
Now, another question arose: she has medical directives that state that if she is incapacitated in just this way, unable to care for herself, she wants to be allowed to die gently. To do that, we would have to remove the feeding tube and put her in a hospice for the dying. She would be comfortable, she would not feel the pain of starving. Her life would end within a few weeks, at most.
However, as a totally conscious human being, no matter the fact that her son has a medical power of attorney, this was not a decision for family. It was her decision. We could not just say nothing about it. Because she cannot initiate any communication, she had to be asked.
I would not dream of placing the burden of having that conversation on her son, and not a stranger, not even a doctor. I had to do it.
On Thursday morning I went to her to have the hardest conversation of my life. I explained to her what her situation was, and told her that, if it was her wish, we would have the feeding tube removed. I told her about the doctor who would help her, that she would have no discomfort, and, very, very clearly, that this was about passing away.
I gave her the choice: hospice or rehabilitation. And at that moment, I saw something about the human spirit–and my sister’s spirit–that I consider to be absolutely holy and wonderful. This woman, who has had her life torn away from her, gathered together what she has left of human expression and a smile like the sun in the morning crossed her face, and she chose life. She chose to try with what she has left of God’s gifts to her, to go on down this road.
So very many of you send me e-mails with your prayers. I think that prayer works. I believe the studies. And I think that she is receiving help and grace from your prayers. Because no only has she made this choice, she has some movement back in her right side that just six days ago the doctors thought was hopeless. She is making word-like sounds. She can sit in a chair.
And out of this darkness and the terror of her situation, my God can she smile.
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