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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How did I get here?

With a laundry basket on my hip or a brief case on my shoulder, I’ve looked longingly at the laptop during the last couple of months. I just haven’t been able to squeeze it in. It feels so good to be back again. It’s hard to know where to start, so I’ll just dive in.

Last week I was sitting in the waiting room of my Congressman, Michael Capuano (8th District, Massachusetts, US of A). As I sat on the sofa in his waiting room, looking at all his Boston bric-a-brac (baseball caps with college logos seem to be a favorite), I had one of my surreal David Byrne moments; just like in his classic Talking Heads’ song, I found myself wondering, “How did I get here?”

Fifteen years ago, Michael Capuano was my mayor. I didn’t know him then. I didn’t care about politics, especially local politics. I wasn’t a home owner, didn’t have kids in the school district, didn’t care about property taxes. I was a true civic deadbeat. I don’t even know if I voted in local elections.

My, how things have changed. Last week I sat on that sofa with sweaty palms, waiting to be meet with  his chief of staff to encourage the Congressman to support House Resolution 3423, the ABLE (Achieving A Better Life Experience) Act. The passage of this act would make it possible for my son, and lots of other people with disabilities, to be able to have more than $2000 in a savings account without risking losing social security and medicaid benefits, which he will surely need as an adult. Right now, most folks with severe disabilities are living in enforced destitution in order to qualify for benefits like healthcare and housing assistance.

While that doesn’t answer the question of how I’ll find the money to put in the savings account, to say that the passage of this act would give me peace of mind doesn’t even get close this act’s significance. The passage of this act would let me and lots of parents like me feel a little less afraid to die. 

So I’ve gone from not caring at all about politics to caring a whole lot. Does that make me selfish, or full of  self-interest?

Perhaps. Probably. Maybe there’s some nobility at least in spending time trying to change the rules on everyone’s behalf rather than using that time to sit with a financial planner in some office somewhere finding loopholes that would benefit just us.

But what struck me more than that in that moment was the very strange feeling that while this was not what I had planned for my life, Life had more in store for me than I ever imagined. Once again I have to ask myself the lovely words of Pema Chodron: “How did I get so lucky to be awakened to others and their suffering?” Maybe it is only in this awakening that we become politically activated. At least, it was for me.

Sitting in the Charnel Ground

Heads-up: This post contains some dark images, but I’m letting them out in the hopes of letting some sunlight in, shining some light onto what I’m sure many struggle with.

The moment starts out mundanely enough. Standing in line for coffee at our local donut shop, I attempt to distract myself from the racks of be-sprinkled options behind the counter by giving all my attention to silent TV monitor hanging from the ceiling. Then there it is, the scrolling headline of the mid-day news about the local schoolworker accused of sexually assaulting a student with a developmental delay, and I’m real, real gone, as Van Morrison says. An invisible hand has punched me solidly in the gut, and for the next few hours I’m walking, weak-kneed, in a terror-induced fog.

This has been happening for a while, this getting overcome by stories of abuse when I least expect them. Half-heartedly skimming down my Facebook wall, I come across a headline (courtesy of the disability organization that I apparently “Like”) about two adults with developmental disabilities who have been found locked in a basement by a couple who stole their Social Security checks.  That I do not wretch is a miracle. Or in class, watching an inspirational short film about disability reform, images of neglected “students” from an institution in the 1950’s flicker by, and it’s all I can do to get myself out of the room before convulsing in tears in the hallway.

These images come when I least expect them, when I’m least prepared. They are the distillation of my very real but unspoken terror: When I am dead, who will protect my vulnerable, trusting son from abuse? (There, I said it.)

Buddhists might say that I have found my charnel ground: the above-ground sites of ancient and medieval India and the Himalayas, where corpses were left to decay naturally with the help of scavengers and the elements. It is said that the Buddha encouraged his students to meditate in charnel grounds as a way of releasing the ultimate attachment: the attachment to one’s body and to this life itself. The practice was meant to be uncomfortable and challenging. Kind of like a spiritual Tough Mudder. Get through this and all else will be a cakewalk. Not sure there’s a “getting through” this, but I would like to be able to not burst into tears in a meeting. So it could be worth practicing.

Pema Chödrön guided us through a Charnel Ground Practice when I went to her retreat this past fall. Her advice: To build your tolerance, don’t try to stay engaged for too long. For 30 seconds at most, just be with the feeling, the terror, the rage, whatever it is and then retreat. Breathe through your nose, not your mouth, which is more likely to bring the feelings up to the surface. Stroke your arm, which does something biologically to calm you down. Think about something else. Like any muscle, over straining causes injury, sometimes irreparably so, so don’t overdo it.

I think it’s working. In the past, these images were so terrorizing that it’s one of the reasons I avoided engaging with the disability world at all. I didn’t have the capacity to handle even a split-second consciousness of these possibilities. But now that I’ve taken the leap into the deep end of advocacy and activism, these stories are everywhere and there is reason to practice tolerating them. If I want to understand how to eliminate the circumstances that make these atrocities possible from happening in the first place, I have to engage.

Part of living fully and deeply means learning, if not to get comfortable with, then to at least tolerate the presence of great sorrow without turning away. Facing our deepest fears, if only for a few seconds from time to time, we can learn to be there for each other, not get carried off by our fears, and stay present and aware of what is needed of us in the moment to make things better for all.

A new perspective on sinking and swimming

Other people’s dreams can be so tedious, I know, but it can’t be helped.

I’m at a support group with other parents of special needs kids; I can’t see the other participants (am invisible to them, too) because the room is all obstructed views. I ask if we can re-arrange the seats, but am told that I don’t need to be there, this meeting isn’t about me, I seem to be doing fine and this is a support group for people with urgent issues, but why do I ask, they wonder, do I need to talk? I burst out crying, “I ALWAYS need to talk,” and I’m whisked away to another part of the room before I infect the others with my hysteria.

I am led to a table surrounded by a Greek chorus of special needs parents who in real life know my heart the best, and I plead “When will I need to stop talking about this?”, embarrassed, ashamed that I’m not cool about all this, that my struggle means that I don’t love my son, that I’m not a good mother. “I mean, he’s healthy, he’s not in pain, he’s not sick, he’s loving, he’s great. So why do I still feel like I need to talk about this?” They absorb my words impassively. Without pause my words continue to flood out, “Sometimes I think about what it would be like if I could take all of his challenges away,” and they shake their heads vigorously, moaning, “No, no, we must never do that, it can’t be done,” but I can’t help it, the words are already out, Pandora’s box has been opened, and the only way to describe what that would be like is to show them, and I raise my face upward and gasp for breath, arms floating as if I am breaking the surface after being underwater much too long, and they all raise their faces too, and they all inhale deeply with me.

“But that’s not the right metaphor,” I said, “because that would mean that now, I am drowning.”

And I wake up gasping for breath.

———–

Last weekend I went on a retreat called “Living Beautifully with Complexity and Change.” Our theme, we were told, would be this prophesy, taken from Perseverance by one of our teachers, Margaret Wheatley.

From the Elders of the Hopi Nation
Oraibi, Arizona  June 8, 2000
 
To my fellow swimmers:
 
Here is a river flowing now very fast.
It is so great and swift that there are those
who will be afraid, who will try
to hold on to the shore.
They are being torn apart and
will suffer greatly.
 
Know that the river has its destination.
The elders say we must let go of the shore.
Push off into the middle of the river,
and keep our heads above water.
 
And I say see who is there with you
and celebrate.
At this time in history,
we are to take nothing personally,
least of all ourselves,
for the moment we do,
our spiritual growth and journey come to a halt.
 
The time of the lone wolf is over.
Gather yourselves.
Banish the word struggle from your attitude
and vocabulary.
 
All that we do now must be done
in a sacred manner and in celebration.
For we are the ones we have been waiting for.
 
————

In my dream, I was right. Drowning wasn’t exactly the right metaphor. I wasn’t drowning, but being torn apart from clinging to the shore. And the clinging, I see now, doesn’t come from me wanting him to be anyone other than exactly who he is, but from wanting the rest of the world to be a place where he — where all of us — is safe, welcome, valued. I know that to help the world become this place, I must let go, surrender to the river and its destination, and sometimes I can. There are no guarantees that the middle of the river is any safer, any less treacherous, but it feels like the right thing to do. Every moment becomes the chance to do it again, to re-commit to letting go and being in the middle, where all the important work gets done.

Here I float, in the middle of the river, in sacredness and celebration, banishing the word struggle from my attitude and vocabulary. Will you join me here? When I forget, will you remind me to let go?

Expanding the circle of “us”

You don’t know how it feels to be me.” Tom Petty

Community is a wonderful thing, a place where we feel a deep sense of belonging, a place where we feel seen.  The special needs parenting community has been particularly healing for me. Connecting with people who understand my challenges, my fears and my anger releases or lightens those very same emotions simply through the act of having them observed and acknowledged by someone who I believe understands them. Realizing that instead of just a “me” there is an “us” is a true blessing.

The trouble is that with every “us” there comes a “them.” By finding comfort and community with those who understand what it’s like to be me, I’ve been drawing a ring around the “us.” While I’m not exactly banishing folks who haven’t shared my experience to the space outside of the circle, I’m unconsciously not including them.

This weekend I was on a meditation retreat with the Buddhist nun and wonderful teacher Pema Chödrön. At certain points throughout the weekend, she invited questions from the audience. An audience that I realize now I saw as “them.” People approached the mic, shared their stories, sought advice. People who had no idea about my particular flavor of pain, but who clearly had their own: addictions, abuse, trauma, violence, isolation. It was impossible to not expand my circle to include them in “us.” Our pain is all the same, Pema pointed out. Only the storylines differ.

When I am in pain, I feel isolated, cut off and invisible. Why would I want to inflict that pain on someone else? It struck me that placing someone outside my circle was an act of aggression, of causing that very same pain. It’s a little embarrassing and ironic for a person who declares she wants everyone to be included.

“How did I get so lucky to have my heart awakened to others and their suffering?”

–Pema Chödrön

Gloriousness and Wretchedness

Life is glorious, but life is also wretched. It is both. Appreciating the gloriousness inspires us, encourages us, cheers us up, gives us a bigger perspective, energizes us. We feel connected. … On the other hand, wretchedness–life’s painful aspect–softens us up considerably. Knowing pain is a very important ingredient of being there for another person. When you are feeling a lot of grief, you can look right into somebody’s eyes because you feel you haven’t got anything to lose–you’re just there. … Gloriousness and wretchedness need each other. One inspires us, the other softens us. They go together.

Pema Chödrön (Start Where You Are: A Guide to Compassionate Living)

Lately it feels as if I am reaching the limit of my emotional capacity—my container, as it were, is if not overflowing, then damn near full. It seems like I’m looking at everyone around me through a pair of polarized sunglasses, bringing their pain, regret, injustice, joy and gratitude into vivid clarity. The highs seem higher, the lows lower.

Life seemed simpler when I was just bobbing along the surface. Digging in the dirt of the real and sometimes unmeetable special needs of my children, my family and even myself has brought me into contact with a side of life that I’d rather not know about.

Without afflicting you with the horrifying details, I was beyond saddened—I was sickened–last week to read of the case of abuse and coverup at the Judge Rotenberg Center. Years ago I would have shaken my head at the inhumanity of it; now I take it personally and read it as if it is happening to my own children. It’s so raw and extreme and I know it’s not helpful, but I don’t know how else to be right now.

It triggers a nerve, begging the question that many parents of children with special needs contemplate—what will happen to my child when I die in a world of so much fear, so much ignorance, so much evil? I know, I know, heavy stuff, and not what you came here to read about. I sat with the question for a moment, breathed deeply and got on with life. What else can one do?

And though this is the new normal for me, I can’t leave this post hanging that way. As I said, the lows are lower, but the highs are higher too.

This weekend we went camping with some old friends. Their daughter is only a few days older than my son, though cognitively and physically they have seemed light years apart for a long time. She is becoming a beautiful, intelligent, strong girl and I’ve observed for the last few years how she tries to make sense of the boy who she once considered her best friend, who cannot always keep up with her fun, but who delights so much in everything she does that he literally cannot stop laughing when he’s with her.

She and I had a few minutes alone together walking in the camp ground. Surrounded by so much nature, we got to talking about the cells that all living things are made of. It seemed a teachable moment, and so I then remarked on how there are genes in each cell which give instructions on what the cell should do, and that sometimes these genes start giving the wrong instructions. In her friend’s case, I explained, the instructions about growing and learning are a little mixed up. “But sometimes there’s a good side of these mix-ups,” I said. Her eyes lit up with her a-ha moment, she nodded and without missing a beat, she said, “Because he thinks everything I do is funny!”

To watch her have that awakening, that difference is natural and sometimes beautiful—I can only wonder why I spend so much time worrying about the world when it is filled with so much love, so much awareness, so much connection.

Heartbreaking challenge and breathtaking beauty. Wretchedness and gloriousness. They go together indeed. And luckily, as the emotional containerthat is my heart is pushed to the limits of its capacity, it is seemingly growing bigger.