Overcoming paralysis with a single step

In a recent stress dream, I sat in an airport coffee shop knowing I was supposed to board a plane, but with no recollection of when the it was going to take off or from which gate. Despite being surrounded by information counters and departure displays, I just sat and sat, paralyzed and ashamed, with no sense that there was anything I could do.

Of course, these stress dreams usually occur for a reason.  My son has been getting hurt lately due to an unusual symptom that makes him fall down at sudden noises, and I’ve known for a while that it’s time to do something about it if I want to keep him safe. But the anecdotes I’ve heard from other parents who have kids with this rare syndrome have given me the impression that there aren’t really any good solutions, and each one caused its own negative feeling. The options appeared to me to be as follows: have him start using a wheelchair (makes me sad to think of limiting his mobility on purpose), start on heavy-duty personality-deadening anti-psychotic medication (ugh!), finding a helmet or brace or full body bubble wrap (makes me worry that he will incur even more stares than normal), or collaborating with industry for new applications for existing technology for sound-blocking headphones (makes me feel exhausted just thinking about it), etc, etc. Or I could just doing what I’m doing now, holding my son’s hand whenever he is standing up, even in the house (which is making me feel strung out). So I have been doing nothing, just sitting at the airport waiting to miss the plane.

This morning my husband and I had a quick huddle: I would ask the parent community of my son’s syndrome for their advice, my husband would research headphones. Within minutes of posting my inquiry to the Facebook group (“Help! It’s time! Tell me what you did and help me figure out what to do!”) I had responses. Not perfect answers, but ideas. I realized that many of my fears were completely exaggerated. The drugs weren’t all bad. There was a special walker that could work. The wheelchair wasn’t the worst thing. And most of all, there was company and commiseration.

My recent dream hit all my nightmare buttons: being late, unprepared and disorganized, inconveniencing and disappointing others, appearing and actually being incompetent (two separate but equally humiliating fears). But what really scared me in the dream was observing myself be unable or unwilling to do anything about it, the acceptance of paralysis. Today reminded me that there are plenty of times I’m scared stiff, and that sometimes all I need to do is to take just one small step, especially when that step is asking for help and companionship. Because being afraid is bad, but being paralyzed by that fear is the real nightmare.

Do you have a scary aspect of your child’s care or development that’s got you frozen? What small action could you take that could help you get unstuck–even if it’s as simple as asking for company?

 

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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.