I came in last. And it was great.

I ran a 10 km road race this weekend, and I finished dead last. And it was great.

I wasn’t expecting to win. When I registered, I figured that like in the many festive road races I’d run before, I’d simply blend in with the pack, my physical mediocrity invisible among the bell curve of humanity. It’d be a great reason to get some good runs in early in the season, and I’d start the summer off in better-than-normal-for-me shape. This one would be even better because it was passing through my neighborhood, even traveling along my normal loop at certain points, so it was surely convenient.

Showing up at the starting line to pick up my number, I learned that there were just 60 of us, nearly all of whom were wearing such technical gear that it was obvious that I was out of my league. Incredulous that things could be this bad, I laughed it off, but within about two minutes of the crack of the starting pistol, I could see that the my fellow 59 runners and I were parting company.

This put me immediately in an interesting psychological state. Because I really, really hate being last. I hate simply being bad. As a child, if things didn’t come really easily to me, I’d quit. Ballet, softball, guitar, honors math. So I excelled at everything I did, because I only did the things at which I excelled. Carol Dweck calls this fixed mindset, in which we believe that our character and talent are static and determined early in life. Clearly it’s less preferable to growth mindset, a viewpoint that thrives on challenge and sees it “not as evidence of unintelligence but as a heartening springboard for growth and for stretching our existing abilities,” (as written in Maria Popova’s excellent summary of Dweck’s research.)

Being bad at something, especially sports in a group, has in the past awakened a deep sense of shame, and sure enough, shame planted itself on my shoulder for a good view of the unfolding events about 500 meters into the run. Lately, I’ve also started noticing that when I’m ashamed, I lash out with blame. That was there too. Blaming the organizers for doing such a pitiful marketing job, blaming the other runners for being so gifted, even blaming the receding glaciers for leaving the landscape so hilly. This very short animated video of  Brené Brown’s wisdom on blame sums up how blame is simply another attempt at escaping an uncomfortable emotion.

It would have been normal to quit, but I guess all these years of listening to people like Jon Kabat-Zinn and Pema Chodron have had some effect. They’re always saying stuff like “mindfulness is simply the moment-to-moment paying attention to what’s happening  without judgement” and even more simply: “Don’t bite the hook.” And by that I have understood that when an uncomfortable feeling shows up, there can be some value in not trying to turn it off, and instead just observe yourself feeling it. Easier said than done. But at some point during Kilometer 1 of this humiliation, it struck me that this could be an opportunity for some major not biting of the hook. I could allow the anger, blame and shame to rage on the inside, while my legs slowly carried me along.

The kilometers passed, and I fell further and further behind. Every several hundred yards, there was a volunteer stationed to cheer people on and make sure we didn’t lose track of the trail. Each such encounter was a renewed opportunity for embarrassment, and I imagined that they were all in communication with each other about this pear-shaped, middle-aged, out-of-shape lady who was wasting their Saturday evening. I apologized to each of them for being so slow and thanked them for waiting, grateful for the ones who didn’t jump in their car and dash off seconds after I passed.

Eventually, my thoughts turned to dropping out, and I started formulating a plan about how I would take off my number and hand it to one of the officials at the next check-in. The problem was, I lived near the finish line, and I’d still have to run the entire way home anyway. I found myself thinking that I’d run just a little bit more, and hit a rather long stretch during which I was on my own.

I was still feeling pretty crappy but noticed that other thoughts started showing up. “Nothing changes if nothing changes,” I watched myself think. Dropping out would simply reinforce that I was a quitter. Then I thought that while it might feel terrible to finish last, it would definitely feel worse not to finish at all. At the top of a hill I started thinking about what kind of message would I be sending to my daughter if I dropped out, and what a gift it might be to show her, just once, that it was ok to be bad at things. I thought about my son and how, because of the way society is rigged for people without his cognitive and physical disabilities, he often comes in last in life. I suddenly appreciated his grace and dignity in the face of constant messages of not being good enough. Could this experience give me insight into his experience?

I thought about the people who weren’t running but had wanted to. Maybe there was someone who would see me shuffle by and think, “If she can, I can.” And finally, I started questioning my projections on the volunteers. Why did I assume that they were bored and impatient for me to finish? Maybe they deserved better.

There was a water break at around Kilometer 6. I was out in the middle of the woods with two teenage girls who made me feel like this was the most fun they’d had in weeks, confirming my theory that projections are some powerful magic. I asked them if they’d ever been last. Yes, they said. Any tips? Well, one of them said, you’re doing way better than the people who didn’t sign up. And at that moment, I knew I’d finish.

All of a sudden, I was at Kilometer 8, then 9. For the last 100 meters, I was cheered on by everyone who had volunteered at the registration and the starting and finish line; it felt like there were more people than had run in the entire race. I expected it to be the stake in the coffin of humiliation, but some knot has loosened, and it was actually great. One of the shy teenage boys who I’d seen out volunteering on the course even came up to me and said that he thought I worked really hard. Not sure it was meant as a compliment, but I took it as such. I think it was.

And suddenly…I was done. I looked down at the medal that someone has slipped around my neck at some point and realized that nowhere on it did it say that I’d finished last (by a lot). Maybe it was the endorphins or the dehydration, but I took this selfie and realizedIMG_6455 that the only thing I felt was great. Simply watching the shame and the blame unfold without reacting had released some deep behavioral patterns and habitual thoughts, like touching a soap bubble with my finger.

So this is what coming in last feels like. My legs are sore, but my spirit is soaring. I can live with this.

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I made it possible

This afternoon I hemmed a pair of curtains with stitchwitchery, that magical roll of some sort of tape which, when ironed between two pieces of fabric, makes a needle and thread unnecessary. I have no idea what it’s made of.

There was a point in my life when that would have been unthinkable. Granddaughter of a skilled garment worker and a woman who can find her way around a loom, I didn’t just wear the mantle of women’s handiwork proudly: I carded, spun, dyed, wove, sewed and embroidered it myself.

Last year I tried to grow flowers from seeds for the last time. Well, that’s not true; a packet of sunflower seeds arrived in the mail for my son, and I planted them today. But I have no expectation that they will make it. The fierce discipline required to provide exactly the right heat, but not so much that they get leggy, and moisture, but not so much that they get moldy, is slightly out of my reach. They’re on their own.

There was a time when I would have made jam from wild berries I picked in the woods. That happens rarely these days. I’ve become a woman who, when asked the question, “Did you make this?” coyly answers “I made it possible.”

Looking at the curtains hanging now, I realized that there is no guilt or disappointment, no sense of “cheating.” Mind you, I have nothing against homemade things. I may even make my own pie crust at Thanksgiving. There is joy in creation and self-sufficiency. But I do mind how I easy it is to judge myself based on how “from scratch” my life is. I realized today that letting go of making certain things has freed up time and energy for making other things possible. Which is why I’m telling you, in case you too are the kind of person who beats yourself up. Personally, I’m going to outsource that, too.

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Turning the page on reading

I love reading. I love reading fiction, being transported to worlds real and imagined, past, present or future. I love a good memoir, how I get to slip inside another person and see the specificity of their story and universality how our stories are alike. I love reading poetry, especially the kind that aims a tight spotlight on just this moment and reminds me in a few short lines of the link between the mundane and the divine.

At age 13, my son still struggles to say the alphabet correctly all the way through. He has spent hundreds of classroom hours matching, tracing, cutting out, pasting and pointing to letters and words, without much of it sticking. I expect that by adulthood he’ll have a number of site words that he’ll recognize, like his name or words like “exit” or “stop” (or “X-box”) that have a context and format that make it possible for his brain to transform lines and shapes into meaning. But novels and texts are unlikely.

The thought that he won’t have the opportunity to experience reading leaves me sad. As a person who finds wisdom, adventure and joy in reading, coming to terms with my son’s situation has been…well, it hasn’t.

A couple of weeks ago, I was talking with someone who happens to have dysmelia—he was born with only one hand. I haven’t known him long, but long enough that I don’t notice his physical difference anymore. If anything, I simply note how graceful he is in the way he moves around in a two-handed world. He is retired now, and it seems to me he’s had a satisfying career and enjoys a rich and enjoyable life.

He was talking about how he is sometimes contacted by parents who have recently given birth to a child with dysmelia; it’s clear, he explained, that the parents are grieving for experiences their children will never have. But this grief is often based on their own attempts to replay their own childhood in their minds and attempt to live it one-handed, and that often just doesn’t work. He tells these parents that he has participated in research in which his left hand was held up to a mirror in order to trick his mind into believing that he had a right hand; the fMRIs taken while he looks at the mirror show without a doubt that the place in his brain that should light up when he thinks about a right hand has simply been assigned a new task. It has been filled, he chuckled, with more sensible things. Because he has never had this hand, he can’t say that he’s “missing” a hand or that he misses it. And his life, while not without challenges, has been just fine.

I came away from our meeting with my head spinning. I thought about how other people experience immense joy because they are great at physics, or speak Spanish, or play the piano. Do I ever feel sad that I can’t do those things? Not at all. I take pleasure in other things that I’m good at or enjoy. So why do I persist in grieving for my son’s relationship to reading, simply because I enjoy it? Could this feeling be not really grief, but pity? Am I actually insulting to my son and his gifts and his reality by feeling sorry for him instead of helping him find wisdom, adventure and joy in other places? It suddenly seemed so.

I opened a bookI wrote this first draft this morning. This afternoon someone posted this picture on Facebook, with the comment about how this so perfectly captures the magic of reading. “I opened a book and in I strode; now nobody can find me.” The sentiment has definitely been true for me. I noticed that the place in my gut that would have normally twitched was actually still. And that’s not something I could have learned in a book.

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Sorry-grateful, regretful-happy

“You’re sorry-grateful,
Why look for answers
where none occur.”

–Steven Sondheim

There’s something unfolding and I’m so ambivalent about it that I don’t even know how to start this post. That happens sometimes when I try to write about tricky feelings. Usually the act of writing provides a clear point of view, enough that I can scroll back up and re-write a couple of sense-making introductory sentences. If you’re reading this, it’s safe to assume that my ambivalence remains.

Two-plus years into life in Sweden and we are tapping into a service that didn’t exist for our son, with his complex developmental disabilities, in the US. It’s affectionately known in Swedish as kortis, which loosely translates as shorty, and is literally short for korttidsboende (short-term residence).

Kortis offers kids with significant cognitive, behavioral or physical disabilities a place to spend some time away from home, usually a weekend a month, a week or two during the summer, and sometimes one or more nights during the week depending on the person’s needs and family situation.

It’s good for a bunch of reasons. Social workers refer to this service as respite, which is so uncommon in the US that if you’re like me, you may need help figuring out how to pronounce it. (It’s RESS-pit.) For us, that means the chance to sleep in, move more slowly, finish a thought, grab a daytime movie, to catch up on home improvement projects, and spend some uninterrupted time with our daughter. (Yes, I’ve been daydreaming.)

The benefits for our son are many; he doesn’t normally get sleep-overs or sleep-away camp, but suddenly he’ll have weekends filled with outings, movie nights, good food and time away from his sometimes over-protective, boring and/or exhausted parents. He’ll get the chance to practice skills that he’ll need when it comes time to move away from home, too. Most importantly, it’s a stimulating change of scene for a kid whos world could stand to be a bit bigger.

And in our new life, kortis is available to us, close to home, with plenty of qualified staff. And it’s free.

Even so, there’s a lot I don’t feel good about. For starters, there’s the terror of letting my more-vulnerable-than-average kid spend a prolonged amount of time with adults who aren’t family. Do I need to get into the depths of that terror? Compound it with how easy it is to feel like a failure as a parent when you finally admit that in order to get your family life to work, one of your kids will spend time away from home.

But after two years of telling the agency powers that be, “thanks but no thanks,” we finally have to admit that our son has needs that we can’t meet. We’re resolved to make it work.

It’s been several months of slow transition: first our tour of the kortis house, then a meeting with the in-take coordinator. Then our son had dinner at the house (once with us tagging along, then once without us), and a first attempt at a sleep-over that ended with a call home at 11:30pm when our son was too excited to fall asleep. Tonight my husband is camping out with him at the house, in an attempt to get him through the night. Several more baby-steps may be needed until he adjusts. Until we do too.

Deep down, I know that it will be great for all of us. But for now, I’m sorry-grateful, regretful-happy. That kortis is an option for us. And that we need it.

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Wait for it

I was thrust out of sleep last night for a few brief seconds into total free fall, just barely this side of consciousness, unable to recall where I was, who I was, why I was. For a moment I struggled to orient myself in space and time, until I heard myself say in a calm, competent voice: “Wait for it.” hyperspaceA total sense of trust washed over me, a sense of excitement even (who might I be?) until finally I slammed back hard into the labels and perceptions of me—my name, my place on the globe and in my bed, a knowing that today was Tuesday and that I’d go be going to work in a few hours, coffee first. Then it all receded and I slipped back into sleep.

My son turned 13 this summer. As a parent, there is a sense of barreling through the unknown now. After so many years of trying to make a childhood, it’s already time to start building an adulthood. We leave the Beginning behind, and head into the Middle. I know it’s a complicated process for all parents, but this is different, or maybe just a heightened, hi-octane version of the same thing. More intentionality, more paperwork, more letting go whether or not if feels like it’s time. For a child who is so far behind his chronological peers in so many ways, he must begin to prepare for his adulthood long before most the others. And we are here to help him, making decisions about which skills to focus on, which goals to scratch off the list. Mostly, it’s about accepting, for better or worse, that adulthood is coming, and even though he may need help like a child in some ways forever, treating him like one isn’t what he wants. Even when it is, it may not be possible.

What I wouldn’t give to feel that sweet sense of safety I had this morning during this process. To trust that the answers will come and “embrace the questions” of this transition. To perceive the unknown as no problem, exciting even. But I’m not there yet. I guess I’ll have to wait for it.

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In the soda aisle

In the grocery store yesterday I passed a dad holding his baby in the soda aisle, right between the ginger ale and the sparkling water. He stood there, babe in his arms, simply covering it with kisses. He wasn’t trying to cajole the baby or comfort it; instead it seemed as though his love was just so big, so overflowing that he couldn’t take another step without letting some of it spill out. It got me thinking about how there was a time when it probably wouldn’t have been OK for a father to feel that much delightful affection for their child, let alone show it in public. We often think about improving gender equality as something that will only benefit women, but clearly as the world has shifted to open up some public domains for women, it has also allowed men to shed private norms that have kept them separate from their whole selves. Emma Watson’s speech to the UN general assembly for her HeforShe campaign makes this argument movingly, but reminds us that we still have far to go.

There’s a parallel argument here which disability activists have been trying to make for years, but which I don’t think we’ve been able to make compellingly: increasing access and inclusion for people with disabilities isn’t simply good for people with disabilities, it’s good for people without them too. Opening up my world to a wider range of difference in others has meant that there’s more room for me to be me. It’s easier for me to accept and even love myself and all my differences when I get the chance to know and love others for theirs. When everyone belongs, I belong too.

The disability movement, with its push toward the concept of inclusion in schools, housing, the workplace and greater society, has made some inroads. As with the movement toward gender equality, we still have a long way to go. Until then, I’ll simply have to be grateful that I got to learn the lesson first hand long before it makes its way into the mainstream. Lucky me!

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39,000 feet

“If you promise to give it your all, I promise to make your life as interesting as possible. To give you something to look forward to every day.”

-Chaz Ebert to her husband Roger Ebert, on the relapse of his cancer. Life Itself (2014)

I am writing this somewhere between the US and Europe, 39,000 feet above the Atlantic Ocean, the churning vastness that has been the threshold for my personal reboot many times.

I wasn’t intending for this particular crossing to be more than a chance to eat peanuts and catch up on movies that get ruthlessly vetoed on family movie night. I’ve just finished watching Life Itself, the Steve James documentary about Roger Ebert, the beloved movie critic who influenced not only what I watch but how I think about films.

Steve James and his camera enter Ebert’s life after Ebert had already embarked on a journey with cancer, capturing the unfolding of a relapse which ultimately led to his death during filming. There’s much to say about the movie, but the thing that has me sitting here paralyzed in the dark airplane cabin for the last several hundred miles is what Roger’s wife and caregiver Chaz told Roger upon the cancer’s re-awakening. She recalls for James that upon receiving the news, she offered him a deal if he would muster up the energy to for another round of treatment:

“If you promise to give it your all, I promise to make your life as interesting as possible. To give you something to look forward to every day.”

It hurts me to say it, but if I’m totally honest I’m not the kind of mom who was wired to easily provide my children with something to look forward to every day. Not with my daughter, who’s neurotypical, or my son, who has a developmental disability and complex social needs. Sometimes it’s even hard to know what that might be, as I wrote years ago. I’m a good mom, I think, but that’s just not the way that my love comes out.

My mothering seeps out in other ways. Some days it is simply the effort of keeping a stable, daily life going. At my best times, it has had me quitting jobs to have more time to coordinate doctor’s visits and order medical supplies. Lately it has me tilting at the windmills of injustice, tackling the inequities that leave people like my son underserved, vulnerable and sometimes invisible. I’ve been an activist for causes relating to diability and health care for several years now, doing work that takes me physically and mentally far away from our home and leaves little time and energy left for even getting dinner on the table most days, let alone creating moments of wonderment and magic. I do it in part for other families who don’t have it as good as we do, but also in the hopes of creating a society that will be more able to help my son life a safe and meaningful life.

The idea that Chaz was proposing, to take responsibility for providing someone else’s reason for living—for making it interesting and delightful—made me squirm in my already uncomfortable seat. Because it’s occurring to me lately that that is exactly what I’m supposed to be doing for my son. With his limited agency and independence, I’m not sure that he has the ability to make it happen for himself. And if he doesn’t, who will? What good is the promise of a future life of meaning and joy if there isn’t one now?

In the developmental disability world, parents are often accused of not being let go of our children. But the fact is that they need us in a much more complex way than anyone wants to admit. Sometimes they need us to make interesting things happen. Or at least, hire, train and supervise the person who does. Sometimes we are their (only) friend. Sometimes that’s our fault. Sometimes it’s not.

What if Chaz Ebert’s contract is exactly the one I should be offering my son? What if instead of attending conferences and writing articles, I should be helping him look at the stars or collect shells on the beach? How do I give him the moments of wonder and delight that come so easily to my daughter? If I don’t, who will? What would it mean to take on the responsibility to create interest and something to look forward to every day? And given that that type of nurturing isn’t my nature, how do I personally sustain the energy to do that? And not just now, but maybe for years to come.

I doubt I will have the answer before I land. I plan to talk to my husband and those closest to us about how we can make a life full of wonder and joy for him. Full of things to look forward to. Full of days to look back on. Full of great days. For all of us.

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