I was shopping for Lush solid shampoo bars -- I have become addicted to the Karma bar, and finally needed to replace it. (Oh, to have a Lush store close by! Alas, the nearest one is Bellevue, across the mountains and hours away.) The personalized shopping feature in Amazon often sends me links to items that are interesting. Usually I just ignore them, but this one gave me a second look.
The link was for "Lucky Man", the memoir of Michael J. Fox. They sent me the link because I've been shopping books for PD caregivers. I'm the kind of person that likes a lot of information. I'm a typical Capricorn, needing everything carefully planned out so that I can prepare for any eventuality. My life thrives on routine. I look at these things surreptitiously, not wanting B to think I dwell on it, but needing some timeline, some roadmap, some reassurance on how this is all going to go. Will we have five years? Ten years? Twenty, and retire and live our lives with grandchildren and cats and a motor home? Or will I curl up beside him in that hospital bed, hoping I'm reaching him behind the silent mask?
I am desperate to build memories; desperate to eat all of our dessert first. There will be time enough for vegetables later, when time has run thin and this thing we're denying has finally caught up to us. It eats at the inside of me sometimes. How can this love, this life, be so beautiful, so perfect....and yet so temporary? The metaphors abound to me, the writer, spilling so freely off my fingers and yet each one of them not quite the whole truth. It's a butterfly, brilliant but short-lived. A candle flame, burning hot before it's blown out. It's a delicate glass ornament, as fragile and as heartbreakingly beautiful as a piece of spun sugar, a soap bubble, blown glass, a snowflake in August. I wonder sometimes if he gets tired of catching me with that look on my face, gazing at him as if to memorize every beloved pore, my heart splattered all over the outside of me. Sometimes the wonder and disbelief stagger me. How is it that this has happened? Sometimes it's so big that my only recourse is to bury my head in that shoulder, hold onto him, feel his body pressed against mine and his strong arms around me. There, I can close my eyes and be comforted, be blessed, be home; and we can be just us: a man and a woman in love.
I paged through the book online to see if it held any insights that I had missed. MJF is the face of PD, although it's hard to equate what has happened to him to where B is. B, despite his ten years into the disease, is still only at a Phase 2, with minimal disability and symptoms that are well controlled by his medication. As I scanned the excerpt, the words of MJF jumped off the page at me.
…this unexpected crisis forced a fundamental life decision: adopt a siege mentality – or embark upon a journey. Whatever it was – courage? Acceptance? Wisdom? – that finally allowed me to go down the second road (after spending a few disastrous years on the first) was unquestionably a gift – and absent this neurophysiological castastrophe, I would never have opened it, or been so profoundly enriched. That’s why I consider myself a lucky man.
Here’s one more “apparent perversity”: If you were to rush into this room right now and announce that you had struck a deal – with God, Allah, Buddha, Christ, Krishna, Bill Gates, whomever – in which the ten years since my diagnosis could be magically taken away, traded in for ten more years as the person I was before – I would, without a moment’s hesitation, tell you to take a hike.
I am no longer the person described in the first few pages of this chapter, and I am forever grateful for that. I would never want to go back to that life – a sheltered, narrow existence fueled by fear and made liveable by insulation, isolation and self-indulgence. It was a life lived in a bubble – but bubbles, being the most fragile constructions, are easily destroyed. All it takes is a little finger.
Those words crystallized for me just what it was that I could not articulate for myself. In the PD caregivers bulletin board, someone had said that the diagnosis had had a curious effect for them: the sunlight was brighter, the highs were higher, the lows were easier to handle... in short, life was crystallized, colorized, valuated. The awareness of its transiency made each moment precious and valuable.
THIS IS HOW I FEEL. Yes, the fear is there, but above all of it is this incredible, immense sense of wonder... of gratitude... of joy. And of urgency.
I struggle with the fear, and the urgency. The counselor I see off and on says that in order to overcome it, I must change my "F" words... from fear to faith. I have faith. It was what made me able to walk off that cliff of divorce and step finally out into the unknown, with faith that finally, perhaps, it would be my turn to find out why other people seemed to have that sense of ease and happiness that had been so acutely lacking throughout my life. And the grace and generosity of God is all I can attribute this new life to. Who but God could have pulled B and I out of the atrocities that we were swimming through in our old lives, at that particular time and this particular place, opening us both up to new life at the exact same time, so that we could fall in love? Yesterday in the car I told him I could hardly remember the old life, just that sense of being stuck in a tar pit, fighting to pull out one limb at a time while the others got stucker and stucker, until all the will and the energy had been sapped and you slumped despondent into the muck without any hope of escaping. He looked at me as if I'd spoken gospel. "Yes. Exactly." But somehow something pulled us out, as if by magic. No, by a miracle.
And here we are. Here I am: the luckiest woman in the world. We are embarking upon our journey, B and I. All we can hope is that the road is long and the sunlight warm, and that we are properly grateful for this chance to be reborn.
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