I am my brother’s keeper. And so are you.

I’m thinking of my brother Joe on his birthday today. For two weeks each year we are the same age, but on New Year’s Eve he takes a step ahead of me again. In the back of my mind, all through my life, I’ve known that one of my roles is to be my brother’s keeper. It is only in recent years that I have been able to see him more fully for who he is in his own right, separate from me.

What we all wouldn’t give, those of us who know him, to have fuller access to the brilliant mind we have only been able to see at a glimpse. When Joe was preschool age, in a program focused on teaching such life skills as toileting and eating with utensils, his teachers one day realized he was reading. My parents credit Sesame Street and The Electric Company–as well as Joe’s intelligence–for that self-taught accomplishment. When we were teen-agers, he used to sit on the living room floor each afternoon and write a sports report on a manual typewriter, perfectly capturing the voice of sports reporters. He still reads the newspaper every day, follows politics, listens to religious talk radio (that one’s a puzzler for us), watches sitcoms from our childhood, and tunes into every televised game the Seattle Seahawks and Mariners play. He adores dogs. When we were kids, he taught ours to chase cars. Some of you might remember him running along the side of the road in front of our house, barking at cars as they drove past, our terrier mutt Fritzie at his heels. (The 70s were a different time, eh?)

Joe was not accurately diagnosed (with autism) until we were in our early 20s–which means that his entire formal education failed to address many of his actual needs or develop his intellectual potential. Academics were basic and played a minimal role in his schooling, which is outrageous to me now but did not seem wrong then. Joe was already 10 when we passed the law that guaranteed a free and appropriate education to all children, and I think my parents were grateful that he was in school at all.

While the shifts in understanding and acceptance of autism that have happened in our lifetime are wonderful to see, wondering how things might have been different for him and our family if he’d been born at a later time is a mental path I rarely travel down because it is too painful (and pointless). A lack of services and understanding have limited his life to a degree I can hardly express. The world is a dangerous place for a young, mute man who cannot/will not comply with social norms, such as following directives from police officers. My parents have done what they felt they needed to do to keep him safe in it. (Maslow’s hierarchy of needs for the lose.) 

It has long seemed wrong to me that Joe’s care has been primarily the responsibility of our family alone. I am my brother’s keeper, but Joe is his own person, with his own feelings, needs, habits, and dreams. (After “graduating” from high school–which meant only that he turned 21 and was no longer eligible for educational services– he told our dad that he wanted to go to college, “like Rita.”) Joe belongs to the world as much as any of us do. What happens to the Joes in our society who do not have a safety net of family? What happens to Joe if the one beneath him frays and cannot hold? How do we value and care for those among us who cannot fit into all of our round holes? Or any of them? How can we better support them in being their full, autonomous selves?

Joe is my brother, but he–like any of us–is fundamentally yours, too. We haven’t done very well by him, in many ways. Later today, he’ll be opening a dog calendar from me. It’s what I give him every year. He’ll hang it in my parents’ utility room and faithfully turn its page on the first of every month, and he’ll be happy to have it. He seems to love those calendars. It’s fine for what it is, but I sure wish I–we– could give him more, and that in the pages of the days in the coming year he might find, in addition to cute dog photos, a life with more independence, freedom, and connection to his fellow humans. I hope that, for Joe, as we are coming to know better, we can do better. I hope it’s not too late for the boy who was born too soon.


And so this is Christmas

There are the children’s ornaments, one to commemorate each of their years, turning the tree into a time capsule of their youth. And here are the cookies your grandma used to make, and the tablecloth your great-grandmother crocheted. As you take out of their styrofoam boxes each of the ceramic North Pole houses your father collected in the ’90s, remember how your son used to love them and was so good about not touching the reindeer and elves, even though he wanted so badly to play with them. He’s grown up now, and now the village lives here, in your house, even though he does not. Your daughter is, too, though she still likes to snuggle her pup (who’s turned into an old dog), and she still wants her apple cut up like sunshine.

One night, after the gifts have been opened and the stockings emptied and the logs in the fireplace lit, you’ll find yourself returning to the words of a Yeats poem that haunted you 30 or more years ago. Even though you are not yet grey, or even old (not really, not yet), you’ll understand them in a way you didn’t then, and you’ll wonder at the mysteries science can’t explain–how you somehow knew (when it seems you couldn’t have, because so many of the pages in your book were still blank and could, in theory or fantasy, be filled with any number of possibilities) that those words were meant for you, that for you love, even at Christmas (or especially at Christmas), would be a pacing thing that hides amid a crowd of stars.

All the light we cannot see

My girl is back, and the house feels right in a way that it hasn’t in months and months and months. I haven’t been locking my bedroom door before going to bed at night, the way I do when I’m the only one sleeping here. Every night when I turn the little knob in the handle, I know I’m being silly. I know that no one is going to break in while I am sleeping. I know that even if someone were to try, that flimsy lock would be scant protection from harm. I feel the absurdity all the more when I consciously choose to leave the door unlocked the first night Grace is home.

Maybe she will need to come in during the night, I think, as if she were still a little girl who might need her mother in the darkest hours of the day.

In these first days back, it is just the two of us here. She is home for break, but both of us are still working. She has papers to write, and I have an all-day training to put on two days after her arrival. Her first night, a Wednesday, is my first day of migraine. I push through pain and fatigue and that constant low-level hum in my skull that keeps me from the sleep I need to conquer the headache. Every Thursday meal is take-out.

Friday afternoon, after the training is done and I am officially released for winter break, she tells me to go to bed. “Only for an hour,” I say. “I need to get my sleep back on track.” Nearly two hours later she wakes me, and we order a pizza. “Tomorrow we are eating real food,” I promise.

The next day I am supposed to attend a work-related meeting, but that night I hardly sleep. I’ve been trying not to take any more meds–I’m already over the recommended dose for the week, and in the past year there have been some stern conversations with me about that in which words such as “heart attack” and “stroke” have been used–but I can’t stand the pain any more. I swallow a pill at 4:00 AM, counting on the odds to be in my favor, so she won’t have to deal with any heart attack or stroke while she’s here alone with me.

Later that morning, after waking again, I’m still in migraine fog, but the pain has lifted. I miss my meeting, knowing that if I go I am guaranteeing myself another night like the one I’ve just had, and I don’t want to play medication roulette again.

We have a slow day. I putter, picking up the worst of the week’s clutter. We talk. She procrastinates on the paper due by 9:00 pm. I take a shower mid-day and go to the grocery store, so I can make good on my promise to cook real food. I give her feedback on her paper, the way I used to do when she was in high school. She clicks “send” on it, and I make popcorn and we watch a movie, snuggled together with the dogs.

Sunday morning I sleep in–finally–and wake with my head almost clear. Daisy dog and I settle in with a cup of tea and Nina Riggs’s The Bright Hour, a memoir about living while dying of cancer. Riggs and her two sons are so young–she died before turning 40–that I can hardly stand reading it, but I do because the writing is so beautifully sharp, like sunshine on snow.

It is when she writes about wondering how to tell her sons that she is going to die, and I remember mine at the ages hers are in the memoir, that I have to take a break from it. During the year his dad and I were coming apart, Will had trouble sleeping. (Oh, nuts and trees, nuts and trees…) I would let him get out of bed and lie on the couch while I sat at the nearby computer, prepping for my next day’s lessons. When I was finally done working for the day, he’d be asleep. I would pick him up to carry him to bed, his arms gripping my neck as he breathed into it, his long legs dangling from my hips. I knew that in maybe less than a year, I’d no longer be able to carry him that way; he’d be too big and I’d be too small. The idea that there would be nights I couldn’t because we’d be sleeping under different roofs, that I would not be able to carry him because I wouldn’t be there, wrecked me. Reading now, this morning so many years from then, I can hardly stand to imagine all the feelings Riggs didn’t put into her book–or, at least, the feelings I imagine I would have had if, instead of a divorce, I’d been facing a terminal diagnosis.

I go to Facebook and distract myself with photos of friends, many from my own childhood. One has a son who just graduated from college. Others are cooking or attending parties or–more so than usual in this most wonderful time of the year–missing parents and grandparents who are forever gone. I see a message from my first best friend; we have both just celebrated birthdays. I reply, reminiscing about the time it snowed during our joint slumber party, and I feel myself choking up.

I miss her so. There are so many people I miss now. In response to my last post here, a cousin wrote, “I sure feel that I have missed much of your life.” Yes. Yes, we have missed much of each others’ lives. I remember the time she lived at our grandparents’ house, an interim stop on her flight from her parents’ nest. When I’d visit, she’d drive me to Baskin Robbins for ice cream and polish my nails, and we’d sleep together in her bed. I remember lying there in the dark, under the eaves of a house none of us can now go home to, listening to her tell me stories about her mother and her sisters and her fiance, who was living in another state for reasons I don’t remember, and I miss her and our grandmother and that house.

I think about the horribly corny movie Grace and I watched on Friday (The Christmas Prince), which we howled through because it was so full of terrible cliches. When the main character tells a child that her dead parent is always with her and never really gone, I think:  That’s such bullshit. Why do we tell each other these things that aren’t true?

I cuddle the dog, sip the tea, wondering when Grace will get up. I think about how I so often feel when I am alone in the house, contemplating what I assume will be my future, and how it feels so different now, just knowing that she is sleeping in the room beneath me and will soon come up the stairs, groggy from sleep.

I think about how I missed half the nights of the second half of my son’s childhood. About how I have missed  years of the lives of people I love. About how I am entering the third year of missing half of Cane’s days, and he mine. It is not enough to send cards or exchange Facebook messages or see each other once every few years. We need to share meals and errands and hugs. We need to carry each other to bed, whisper truths in our shared dark.

Unlike Nina Riggs, I am still alive, and I find myself wondering what I would want, how I would live if, like her, I learned on the night of winter solstice that my condition was eminently terminal–that I could not count on years in which to figure out what is essential and what can be–should be–let go.

I wonder why it is only in the not-something that I see so clearly what a something is. That it is only in my girl’s absence that I have seen all the things most precious in the life we once shared, and that it is only in her presence again that I am seeing the true outlines of all that my solitude does and does not hold.


It’s my birthday today, and birthdays alway get me thinking about big, heavy, existential questions–like, what’s the meaning of life? (Hey, clearly I was born this way. That’s a pretty serious baby in that photo up there.)

As mine approached this year, I found myself reflecting on all the things life has taught me in my various trips around the sun–which got me thinking that a list of such lessons might make a cool sort of autobiography. (This is what play looks like for me. See? I can have/be fun, too!)

So, here’s my autolessonography. Would love to see yours, if you’re  inclined to write one.

  1. Walking is better than crawling, but crawling will get you there.
  2. A grandma’s lap is soft and safe.
  3. We cannot walk into other people’s houses as if they are our own.
  4. When your grandma tells you that you can choose a stuffed animal to take home, legs that hurt so much they couldn’t take another step can suddenly sprint down the aisle of Newberry’s.
  5. The world contains wrongs that others will not see or respond to, even when you point them out to those who have the power to right them–such as that in kindergarten, only the boys can build things with the super-cool cardboard bricks and only the girls can play in the boring pretend kitchen.
  6. The purpose of first grade is learning to read, which is worth enduring the petty tyrannies of school.
  7. Happiness is a warm puppy, and contentment is writing at a desk in Mrs. Smallwood’s classroom while the radiator clangs and rain taps against the second-story window panes.
  8. Sadly, there is no Marguerite Henry for canine lovers, and a fervent equine passion would create more intimate bonds with your human friends, but we can only love what we actually love, even if we are loving it mostly by ourselves.
  9. Written words read aloud can fill a room with a kind of silence that feels the opposite of empty.
  10. As your age increases, the number of gifts you get at Christmas decreases.
  11. Pluto is a planet, and reports about planets are boring and stupid, especially if your planet is the smallest one and you have to write it with others who don’t do their share of the work.
  12. We can be cruel for reasons we do not understand.
  13. There is, perhaps, nothing lonelier than being the only sober person at the party.
  14. If you grow your hair long and get your braces off and ditch your glasses and your body slows its growing upward just enough to start growing out, boys who never cared about you suddenly will, giving you attention that feels like equal parts desire and disregard.
  15. Being popular requires skills that can be learned.
  16. The colors of the cars in the pictures on the driving test are not part of some code that reveals the correct answers to the questions.
  17. Sometimes, the wrong people die.
  18. Breaking up with a boy who treats you badly because he is too chickenshit to break up with you will gut you because you know that you’re the one who’s really being dumped, and, sadly, mustering up a modicum of self-respect is a comfort so small it’s no salve for the wound.
  19. Free-falling from the nest into open air is exhilarating and terrifying and exhausting and lonely.
  20. If you buy three weeks’ worth of underwear, you don’t have to do laundry very often.
  21. Your ideas about who people are–including yourself–can be delightfully wrong.
  22. A life of the mind is worth cultivating, even if it breeds discontent. Maybe especially if it breeds discontent.
  23. Despite what everyone has told you, you can, in fact, get a “real job” through the want ads.
  24. Cubicles will never be for you.
  25. Wandering into a mall pet store because the record store isn’t open yet and walking out with a puppy is the type of impulse purchase one is likely to regret.
  26. Moving away from all of your friends and family to start a new career in a new city will put a strain on a young marriage that can break it.
  27. We are capable of doing things we never thought we could, in ways both good and terrible.
  28. Second weddings can be better than first ones, even if they are tinged with sadness and regret and a deep understanding that so many more things than death can do the parting.
  29. Alcoholic loggers in small-town mountain bars can be wiser and more well-read than those with college degrees.
  30. Life can blind-side us in ways we could never imagine, anticipate, or prepare for.
  31. The idea that God never gives you more than you can handle is a bunch of crap.
  32. Barrenness has its own kind of beauty.
  33. Conceiving your children with your feet in stirrups and your legs spread wide in a bright, sterile room while your doctor and husband chit chat about their golf games is a loss so cloaked in privilege it feels wrong to be anything but grateful (but it’s not, something you won’t truly understand until you hit lesson #43).
  34. Once you become a parent, you can never again be nonchalant about your own existence.
  35. Every child in every classroom is as beloved to someone as your child is to you–which means you can never again give your students anything less than your best.
  36. Some years there are no memorable lessons, which is its own kind of lesson.
  37. If you are a poet, you are a poet. An award does not make this any more or less true, especially the morning after you win it.
  38. Your children can be the love of your life.
  39. When the children were toddlers and wouldn’t potty-train and you assured yourself, “They won’t be wearing Pull-Ups in kindergarten,”  you were right. Which means you won’t have an elaborate tucking-in ritual to perform every night when they are in middle school–and you’ll likely miss that when it’s gone, too.
  40. You may not realize that your only real friend is your only real friend until she is suddenly gone and you have no one to grieve that loss with or help you understand what it means about your life that you have no real friends in it.
  41. If you have to hide who you are to keep someone’s love, you never really had it.
  42. The beautiful, painful, uncomfortable poignancy of human existence will often coalesce on the pinpoint of a singular, absurd moment–such as one on a cold January night when a group of late-middle-aged women dress their lumpy, bumpy bodies as angels in white tights and leotards and dance, badly, with solemn earnestness in a school cafeteria for a small-town Christmas recital that was delayed from December because of inclement weather, and the fathers of the young girls who are also dancing in said recital agonize over where to put their eyes and how to compose their faces and how to dance the line between their mirth and disdain such that they will neither incur the wrath of their wives nor betray the women their own daughters may grow to be.
  43. Sometimes we cannot comprehend pain fully until we are relieved from it.
  44. You will take calculated risks to follow a dream because your daughter is watching and when she is your age you want her to follow her dreams, even if it’s not entirely safe–because you know now that following dreams is never entirely safe.
  45. One person’s calamity is another person’s opportunity.
  46. It’s probably good to consider the person who, someday, is going to hate that wallpaper you think is such a good idea today.
  47. Starting over is never-ending.
  48. A person can write a new chapter to a story in your life that you thought was finished, and it will make you revise all the ones that came before it.
  49. Your children will feel pain that you are powerless to alleviate, and that will hurt worse than any of your own.
  50. You should never tolerate abuse in your own home. Ever. From anyone. No matter what it costs to end it.
  51. Story-telling is powerful good magic.
  52. Our hearts can break over and over and over but it doesn’t mean we are broken.
  53. Real love is never conditional, and our capacity to give it is limitless.