“I see you, Mara”

Meeting life’s frustrations with grace and humility, and maybe a little humor.

THE GUEST HOUSE

This being human is a guest house.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice.
meet them at the door laughing and invite them in.

Be grateful for whatever comes.
because each has been sent
as a guide from beyond.

—  Rumi

On the night before the Buddha’s awakening, so the myth goes, Mara, the demon king, appeared and assaulted Prince Guatama with every worldly temptation.  The Buddha-to-be defeated the demon and went on to attain full enlightenment.  However, Mara – who is the symbolic representation of all of the unwholesome states that keep us bound up in daily suffering – continues to appear to the Buddha throughout his life.  Whenever the demon king shows up with a new plan to foil the Buddha’s endeavors, the Buddha simply smiles and says, “I see you, Mara”.  In one well-known story, rather than revile or reject Mara, the Buddha welcomes him heartily and invites him in for tea, serving him as an honored guest.  Thich Nhat Hanh gives a humorous recounting of this story on the Plum Village website.

Every single one of us encounters some aspect of Mara almost every day of our lives.  Long line at the grocery store?  Rude customer service rep?  Traffic jam?  Long coveted fancy car or high-tech gadget?  That chocolate-covered donut?  These are all manifestations of Mara. We either don’t get what we want or get what we don’t want.  In the process of grasping or pushing away, we are capable of generating limitless amounts of suffering for ourselves and others.  The unique environment of  special needs parenting adds even more opportunities for Mara to appear.

Take diapers, for example.  The baby care market was worth 44.7 billion U.S. dollars in 2011 and is expected to increase sales to 66.8 billion U.S. dollars by 2017  (www.statista.com).  Millions have been invested in the development and marketing of infant diapers, which now come with a variety of features, including a highly absorbent core, adjustable velcro-like fasteners, breathable cloth-like covers, contour fit, stretchy elastic waistbands, and even aloe liners.  They come in lots of different sizes to guarantee a leak-proof fit for babies as they move and grow.  Toddlers and pre-schoolers who have not  yet attained full control can choose from several styles of “pull-up” that go on and off like underwear.

Sadly, there hasn’t been the same degree of product development in the special needs diaper industry.  Parents of disabled children get to choose from a selection of poor-fitting,  leaky, plastic lined monstrosities that don’t appear to have changed much in the last decade.

One modern advancement that has found its way into incontinence products is the addition of superabsorbent polymer, a gel substance that soaks up fluid and locks it in the core of the diaper.  While this does help increase the absorbency of the diaper considerably, the gel particles can cause their own set of problems.  I speak from experience when I say that one should go to great lengths to  ensure that a diaper never accidentally finds its way into the washing machine.

Small and medium adult diapers.

Fortunately for our family, Sarah toilet-trained easily around her third birthday.  One day, she just decided she was done with diapers and that was that.  She has never had problems with bed-wetting or daytime accidents.  However, during a seizure, all the muscles of the body contract, including the bladder, resulting in loss of continence.  Sarah’s seizures occur almost exclusively during sleep, so she wears a diaper to bed.  We’ve tried out a variety of styles and sizes.  At 11 years of age, Sarah has out-grown the infant and toddler products and seems to have reached a size that is just in between the small and medium adult sizes.  Lacking a “stretchy elastic waistband”, the small diaper is hard to fasten and frequently irritates the inside of her legs.  The medium size, however, goes almost to her armpits and is too bulky.  We even tried a reusable diaper in an attempt to be more environmentally friendly, but that was just a joke.

Imagine this:  It’s 11 pm and I have just reached that stage where I am truly asleep when, Bam!, I hear the sound of a seizure starting (people familiar with epilepsy know exactly what sound I’m talking about).  Despite having heard it a zillion times, it never fails to send an electric jolt of panic through my body.  Sarah’s service dog is barking and the pulse-oximeter alarm is beeping at full volume while I struggle to turn her over so her face isn’t in the pillow.  The waterproof pad she sleeps on is in a bunch down by her knees where it is completely useless.  All of Sarah’s muscles are taught and contracted.  The bladder, a surprisingly strong muscle, is pushing the pee out in a stream that could cut through concrete.  Out it comes, up from the top of her diaper, soaking everything.  The seizure ends and I am left with an unconscious, limp, sixty pound child laying in a puddle.  Now for clean-up.  Strip off the wet PJ’s and diaper, dry her off and put down a few towels.  The sheets will just have to wait until morning.  Sarah is now starting to try to sit up, but is still out of it.  Anyone who has ever changed the diaper of a wriggling 11 month old who is trying to crawl away during the process knows how challenging it is.  Try it on a confused, post-ictal 11 year old.  If I’m not careful during the struggle to get the fresh diaper under her bottom, the plastic can tear.  Remember that superabsorbent polymer?  By now, it’s midnight and Sarah and I are both covered in pee and soggy gel beads that are ridiculously difficult to wipe off.  Hello, Mara.  So nice of you to visit.

This is the moment when I need my Vipassana practice to kick in.  Screaming four-letter words at the diaper is not helpful.  Take a deep breath and pause.  Notice the emotions.  Where is the frustration manifesting in my body?  Can I just allow it to be there without adding to it, building it up?  Here is the first of the Buddha’s Four Noble Truths.  Suffering. Unsatisfactoriness. Stress. Anxiety.  However you translate dukkha, it is an undeniable part of this human existence.  I have a choice.  Do I rage against it or do I follow Rumi’s sage advice and “be grateful for whatever comes”?  Raging against it means holding onto my anger, staying awake the rest of the night composing my letter of complaint to the diaper manufacturer, cursing the universe that my daughter has epilepsy in the first place.  Inviting it to the banquet means simply recognizing my feelings as a natural response to the situation and then letting them go.  I’m not in a position to design my own line of diapers, so, until someone else does, I’ll just have to make the best of what’s available.

Thanks for paying me a visit, Mara.  What’s that?  Drank too much tea?  No, sorry, you can’t use my bathroom.  Here, try this diaper.

Metta

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