Imagine being able to think, to feel, to get excited or bored or thrilled of happy or sad. Imagine all that while your body freezes around you, gradually, so gradually, taking away your ability to express any of these things.
I’ve been thinking about my MILOR these days. MILOR = “Mother in law, once removed”. Her son and I are divorced, but, instead of hating me like any normal mother-in-law would do, she still for some reason seems to like me. For my part, although we’ve sometimes had our differences, I love her fiercely, and think of her as my second mum. She was there, through my pregnancies. She was there, as I struggled with young children and absent husband. And she is the coolest woman I know. She was a stay-at-home mum, but volunteered all of her life helping others. She would go from massaging the sore shoulders of the wheelchair bound at the local pool to reconcreting her basement floor. She biked all over Ottawa, took the bus when biking was too far, walked when she could. She gardened prolifically and sewed bathing suits for the pool attendees who had special needs and refinished furniture and fixed windows and did the heavy lifting in her family so that her husband, a well-known academic, could focus exclusively on his career. She is creative, writing poems and short stories and sewing most of her own clothing and doing fabulous paintings.
If I’d followed her pattern, I’d probably still be married, but, unlike her, I struggled with competitive goals of my own. I was less willing than she is to see the bigger picture of the net benefit to the family. I was and am more selfish than that.
Still, we shared so much – patterns, sewing mishaps, laughs over crafts that the kids did, praise over our efforts, and so much love and support – as always, she was and is more giving than I am. I wish I could be more like her.
So it is colossally unfair that she should be imprisoned in ALS (Lou Gehrig’s Disease), watching those clever hands lose their strength, unable to lift her head for long to see and appreciate and laugh and speak. She is losing her breath now, and often all she can do is a smile in response, but she struggles mightily to ask questions of my kids – real, caring questions, that show she is still involved in their lives as much as she can be, that she still loves them so very much.
She still goes to the pool, or has until recently, to keep her muscles as toned as she can despite the uncooperative nerves. But it can’t beat back the disease. Nothing can. It is living hell, and for a woman who was active and involved her entire life, it must be exquisite torture. It makes me doubt God, even more than the suffering of my own parents, long gone with cancer, did.
I wish that I could liberate her, for an hour, for a day, for a month, for a minute, from the cage of her body that is encircling her. Instead we, and she, wait for the eventual liberation that will come. I only hope that she finds a peaceful way there.
Love always. And endless gratitude.
(photo credit: http://shirtoid.com/1821/a-caged-bird-dreams/)