Sunday, May 17, 2009

An unknown future

Home.

The sun is out, the air is warm, but I lie here on my bed, wrung out from the time east of the mountains, the traveling back, the stress of coping with Alzheimers.  The moment my feet stepped off the airplane and touched terra firma, my body began its now familiar post-stress vibrating.  It feels like every nerve in my body is a tuning fork that has been hit against a solid surface.  The first time this happened to me was several years ago, and was worrisome enough that I made an appointment with my neurologist.  After many such tuning fork episodes now, though, I know I just have to wait it out.  Just another sign that I don't have the luxury of thinking myself strong and in control of my own life.

As I was winging my way across the state yesterday I was obviously preoccupied by Mom's situation. And for the first time I began to consider the possibility that I will someday walk down this same path.  And, as might be expected, the prospect  (exacerbated, I'm sure, by the fact that I was flying and, therefore, anxious) was quite alarming.  I've lived with physical pain for a long time now, and, for the most part, am used to it.  But this mind-losing disease, I have to say, scares the bejeebers out of me.  When Mom first faced the truth that she had dementia, , she was very scared.  I told her once that the slide into Alzheimers might be something like falling asleep.  For a while she'd know, then she'd drift away into a strange between place, where she wasn't really aware of life.  And then she'd wake up and be with God.  But both Mom's fears and my assessment of her future were based on our intellectual understanding of the disease.  Neither of us had ever known well someone suffering from it.  But that has all changed.  Now when I wonder what my future--or my siblings' futures--holds, whether a holey brain will be part of it, I have something concrete to fear.  It's not nearly as benign as I suggested to Mom that it would be.  When I sit with Mom, the chief emotion I 'feel' from her is fear.  Fear and sadness.  Part of this might be her innate personality. But maybe not.  At one point the other day when she was working very hard to communicate and getting frustrated by her inability, I said, "The world's a confusing place now, isn't it?" And she nodded. "It is," she said. My words and her thoughts had met for a moment. 

Oddly, when I started thinking about it, I was reminded of being in labor with my first child.  It was an excruciatingly long labor--36 hours--and somewhere toward the end, there was some complication with the baby's heartbeat.  The doctor decided that a probe should be attached to E's head in order to moniter her more perfectly. "Will it hurt her?" I asked.  The doc reassured me that the baby wouldn't feel any pain.  But when she was born, when I had a chance to really inspect her, head to toenails, there were three puncture wounds in the top of E's head--from the three tries it took to attach the probe.  And I realized that I'd been an ignorant idiot.  Of course she'd felt that pain.  Of course!  It was only because she couldn't make herself heard that it seemed otherwise.  I imagined her feeling that sharp probe and crying hard--the first pain she ever felt.

This is what Alzheimers feels like to me: if there was any real way to express the confusion, the anxiety, we'd be overwhelmed by the psychic pain of those sufferers.  What most of us feel, I'm sure, is that we'd just as soon avoid pain altogether, but if we have to have pain, physical pain is preferable to that.  At least this is my feeling now more than ever.  So I think, grant me the grace of physical pain, Lord.  Grant me the grace of dying before I go mindless, before my children have to watch me deteriorate, have to make the tough decisions my siblings and I have had to make for our mom, before Beve has to live with a demented spouse.

But...if God's Kingdom is served by such uselessness, even though I can't imagine how, let me go gentle into that good night.  If the twilight falls on my brain before the sun sets on my body, may (somehow!!!) I live with grace, trust and as His instrument.  Of course I don't understand how this will work.  But this I believe: even if I forget my own name, as mom has now, He will not forget mine.  Even if I can no longer pray, the Holy Spirit who will still indwell me, like He indwells my mother, will do my praying for me.  He promises that this is true and I take Him at His word.

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