my paddles clean and bright, flashing like silver,
swift as the wild goose flies, dip dip and swing.
dip dip and swing them back, flashing like silver,
swift as the wild goose flies, dip dip and swing.
we sang this as a round at nightly campfires. i loved the simplicity, harmonies, and images since canoeing has always been my favorite activity, beginning at camp when i was eight and through to this day. i long to be able to get into our red canoe and drift under the stars, explore the 17 miles northward on the dyer river, our new place. sadly i can no longer get out of my bed because of ALS.
being fixed in place could make someone depressed or crazy, especially feeling stuck and trapped. so instead of dwelling on that, i think of being a tree or a small otter tied to the kelp on the ocean's surface so it doesn't drift away while its parents fish. this doesn't work all the time but it really helps. i spend some time remembering and some day-dreaming but mostly i am here, right now, experiencing my life and being in the company of people and animals i love, who take exquisite care of me and who also make it possible to have normal, ordinary days.
i was fascinated as a child by invalids like robert louis stevenson in real life and colin in "the secret garden" in stories. what was appealing about their life in bed was how it seemed like endless summer with no school or chores, lounging around, playing hookey without getting in trouble for it, being waited on and pampered. of course i knew better but i still love the pen and ink drawings in "a child's garden of verses" of robert louis playing with his toy soldiers in the bed clothes.
i often experience enjoyment vicariously, gladly. of course i am envious of other people's mobility and wellness and i desperately miss our couch. i don't feel resentful though; i can't dwell on what i miss and i don't. i want everyone to be as able and well as possible; i root and pray for anyone who's sick and rejoice in other's good news. but i admit it is hard to listen to whining about overblown grievances and lack of perspective, people with much to celebrate and appreciate. i shouldn't be more thankful for somebody's good life than they are!
for my part i can't bear pity or excessive sympathy; or fake cheerfulness; or people i don't know well presuming to write or speak to me, directly or indirectly, about dying and other intimacies without an invitation. i can't escape physically any more and i feel exposed, like a snail with no shell, at the mercy of people's insensitivity. so i work on ways to preserve my dignity, privacy and personal sovereignty. one way is this rant, which i expect will be my one and only since i already feel misgivings about it; that it's too harsh. the things that hurt don't happen very often but when they do it can take a while to recover.
you don't have to walk on eggshells. just be with me and share your life, tell me about meeting annie the kangaroo in australia or the trip to nyc to see a sondheim review or your grumpy day or why you love digging in dirt, a hilarious escapade with children, the music you carefully chose for your small group ministry, gossip - or kayak up the river with a friend, paddles flashing clean and bright, where i can see you right out there on the marsh or in my mind's eye.
