You yourself, as much as anybody…

You can search throughout the entire universe for someone who is more deserving of your love and affection than you are yourself, and that person is not to be found anywhere. You yourself, as much as anybody in the entire universe deserve your love and affection.                                       -Buddha

As the caregiver of a special needs child, one of the most frustrating pieces of advice that I hear on a regular basis is, “You’ve got to take time for yourself.”  “Don’t forget to take care of yourself, too.”  “Take time to pamper yourself.  You deserve it.”

It’s not that I don’t agree.  I totally agree.  But, when I hear this I generally just want to yell, “When?”.  How in the heck am I supposed to find time for myself with all the other stuff I have to manage?  What should I sacrifice?  Work?  Neurologist appointments?  Trips to the pharmacy to refill medications?  IEP meetings at the school?  Orthodontist visits for my teen? Grocery store?  Sleep?  Perhaps you noticed the rather long gap between this blog post and my last one.

I could probably let go of some of the housework, but we do actually need clean clothes to wear and did I  mention that I have an undergraduate degree in microbiology?  Shall I describe the potential diseases caused by the gunk growing on those dirty dishes piled up in the sink?  Contrary to what my teenaged daughter would tell you, I’m not really a neat freak.  You could write the Great American Novel in the dust accumulated on my furniture.  However, I do insist on at least a minimum of sanitation in our home.

So, the question remains – When?  And, if I did find some free time, what would I do?  The truth is, I can’t set aside a lot of time and money for a gym membership or day at the spa.  Fancy manicures aren’t really compatible with my line of work.  I’m not much of a materialist, so shopping doesn’t appeal to me.  A week hiking in the mountains sounds lovely, but is pretty much out of the question.  I need something relaxing and cheap with a flexible schedule.

For a while I had a membership for a monthly discount massage.  It was pretty relaxing to get a regular massage, but the nearest clinic was over 30 minutes away.  With commuting, that was 2 hours out of my only day off and I just couldn’t keep it up.  I try to go to a yoga class once a week, but often don’t make it for the same reasons I had to give up the massages.

The only thing I have found that is relaxing and also fits my chaotic schedule is meditation.  It’s free and can be done in whatever amount of time you have, whether it’s 5 minutes or an hour.  It can also be done pretty much anywhere.  Your neighbors might think you’re a bit weird if  you sit with your eyes closed in the lotus position in public, but you can find a park bench, put on your sunglasses and pop in your ear buds and no one’s the wiser.  At home, I will occasionally bribe my teen to play with Sarah for 30 minutes while I meditate in the bedroom wearing my noise-canceling headphones.  Most days, I do set my alarm clock 30 minutes ahead and meditate while everyone else is asleep.  I also program the coffee-pot the night before because, as far as I’m concerned, meditation before coffee is called sleeping.

My teacher, Randy Gribbin, has a wonderful perspective on meditation.  He says,  “During this time there is nowhere you have to go, nothing you have to do, and no one special you have to be.”  In the act of sitting mindfully, you experience life just as it is in that moment without adding anything to it.   You can let go of planning, worrying, remembering and just listen to the birds sing, the wind blow, or the distant sound of traffic.   For me, it’s a time to give my poor over-worked adrenal glands a break from constantly secreting stress hormones.  It’s a time out for grown-ups.

Although the practice is to follow the breath and let go of thinking, I do sometimes find that, during my time on the cushion, solutions to worrying problems may present themselves.  After meditating, I am calmer and less reactive to minor stressors.  When I’ve been meditating regularly, I find myself better able to catch those times when I’m letting my thoughts run wild, building up what would otherwise be small issues.  So, as my gift to myself, I spend 30 minutes meditating every morning.

As a gift to you, I offer a 15 minute river meditation.  I took this video when on retreat at the Vallecitos Mountain Ranch in New Mexico.  It was my way of bringing home a small souvenir of the great peace that can be found in nature.  I occasionally put in my ear buds, close my eyes, and listen to this during my lunch break at work, reminding myself that, even though I am at the office in the middle of a hectic work day, somewhere in the mountains, this stream continues its merry journey.

I also invite you to listen to the guided meditations recorded by my teacher, IMS trained Community Dharma Leader, Randy  Gribbin.

Metta

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“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.

Slide1

Superabsorbent polymer before and after adding water.

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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What I Learned About Mindfulness From ABA Therapy

In my previous two posts, I talked about how my meditation practice has helped me cope with the struggles of parenting a disabled child.  Sometimes, however, the opposite happens and Sarah becomes my teacher.

Ask any parent of a special needs child what factors generate the most stress and frustration in their day-to-day lives and many will tell you that behavior issues top the list.

A typical 11 year old understands that they have to turn off the TV and get dressed to go to soccer practice.  Children with intellectual disability don’t understand why they have to stop an activity they are enjoying and transition to another.  Children with autism often don’t respond to their environment the way neurotypical kids do.  External stimuli such as noise, activity, and changes in lighting are perceived differently and may result in over-stimulation and behavioral outbursts.  A quick trip to the grocery store for milk can turn into an all out screaming rampage that leaves everyone in tears.

Sarah lines up her cars to feed them dinner.

Sarah has intellectual disability and, what I call, “intermittent autism”.  I know that that is not a real diagnosis, but it describes her pretty well.  Some days, Sarah is engaged with the world, makes eye contact, can carry on a conversation, and enjoys participating in her daily routine.  Other days are a different story.  She refuses to speak or make eye contact.  She may get stuck in a loop, repeating the same activity or saying the same phrase over and over.  She once spent an entire afternoon playing with bubbles and repeating the phrase “Juice makes bubbles!” non-stop.  She has about 100 Matchbox cars that she likes to line up. We then have to go through a ritualized series of phrases and responses that must be said in the correct order before the first car can drive off and park and the entire process starts over with the next car in line.

For years, our biggest challenge has been the morning routine of getting ready for school.  She fights taking off her pajamas and will immediately pull off any article of clothing we manage to wrestle her into.  She screams, kicks, spits out medicine, and throws things.  We have tried time out, loss of privileges, begging, bribery, and, though I’m embarrassed to admit it, even the occasional spanking, all to no avail.  Mornings are so hard that her Individual Education Plan includes a late start time for the school day because there is simply no way we can get her there by 8:30.  Once, when upset over something at school,  she tried to take off all her clothes in the cafeteria as a form of protest.

Last summer, with the start of a new school year fast approaching, we decided to try Applied Behavioral Analysis (ABA).  In a nutshell, ABA  is a behavior modification program administered by a trained behavior analyst who investigates the target behavior, examining its triggers and consequences, and comes up with a plan to promote a desired behavior or skill.

Prior to starting ABA, Sarah had a checklist for her morning tasks – eat breakfast, take medicine, get dressed, brush teeth, etc.  She loves to go bowling and we used that as a reward.  If she completed her checklist all 5 days of the week she could go bowling on Friday.  Unfortunately, even with the promise of her favorite activity, it was not uncommon for her to arrive at school still in her PJ’s with her breakfast and clothing in her backpack.  Sarah’s behavior analyst pointed out that, although most kids her age could work for an entire week to earn a reward on the weekend, for Sarah, this was too far in the future to be meaningful.  Instead, the analyst recommended that we break Sarah’s morning routine down into tiny steps and start by rewarding her for even the smallest bit of cooperation.  At first, her check list included turn on bedroom light, pull back blankets, sit up and get out of bed.  Upon completion of these tasks, Sarah earned a dollar.  It was astonishing how well this worked.  She was so happy to have earned her reward, that she would then happily cooperate with the rest of the morning ritual and make it to school dressed and ready to learn.  After a couple of weeks, the checklist changed to getting dressed – take off PJ’s, put on undies, pants, shirt, socks, shoes.  She puts her dollars in her purse and then gets to go shopping and pick out something to buy with her hard-earned money.  She still has occasional bad days, but mornings are much less stressful than they were prior to ABA.

Most of the time, the lessons I learn from my Vipassana teachers are put into practice during my time off the meditation cushion.  But sometimes, it’s my life experiences that inform my meditation practice.

I try to meditate for 30 minutes every morning, go to my local Vipassana Sangha meeting once a week and keep up with reading the chapters in the book we are studying.  I also occasionally follow a couple of podcasts (The Secular Buddhist and Buddhist Geeks).  Last year, after planning and saving for 2 years, I went on my first weeklong meditation retreat.  I try to avoid comparing my practice to that of others, but sometimes I think that if only I could meditate more or read more books on Buddhist psychology, or go to more retreats, I could really develop that elusive sense of equanimity that so many Buddhist teachers claim is within my reach.

When I meditate regularly, I do see a change in how I respond to the daily challenges life throws my way.  I am more apt to calmly remind my teen to do the dishes rather than react with anger when she procrastinates.  However, all too often, I find myself reacting in the same old way when things don’t go my way.  I miss that split-second opportunity to just pause and be mindful of the situation.  Rather than respond to Sarah’s behavior with patience and compassion, I blow my top and start yelling.  Then comes the regret.  If I were a good Buddhist, I wouldn’t get so angry.

Let’s face it.  I’m not going to become enlightened (whatever that means) any time soon.  If Sarah had a bad night and I only managed 2 hours of sleep, I’m not going to get up 30 minutes early to meditate.  There’s no chance I’ll be able to get away for another lengthy meditation retreat anytime soon and I only have so much time each day to read.  Rather than working toward the far off day when I’ve reached some magical state of inner peace and harmony, I should apply our behavior analyst’s guidance to my own daily struggles.  I will endeavor to set small goals and reward myself for even small accomplishments.  I will forgive myself when I act unskillfully and still go bowling on Friday.

Hey, I managed to sit for 15 minutes this morning and was mindful of the aroma and flavor of that first blessed sip of coffee.  Yay me!  Where’s my dollar?

Metta

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Beautiful and Non-beautiful Elements

For many people, a significant part of self identity is based on the appearance of the body.  I am pretty.  I am fat.  I am black.  I’m a red-head.  We tend to make judgements about ourselves and create an entire persona around a few physical characteristics.  TV commercials and magazine ads would have us believe that we should only be made of beautiful elements: lustrous hair, big brown or blue eyes, sparkling white teeth, flawless skin, rippling abs.  While these attributes are attractive, anyone who came down with the flu this winter can tell you the human body is not always so glamorous.

In the Kayagata-sati sutta, the Buddha advised regular reflection on the asubha, or non-beautiful elements of the body.

 “Furthermore, the monk reflects on this very body from the soles of the feet on up, from the crown of the head on down, surrounded by skin and full of various kinds of unclean things: ‘In this body there are head hairs, body hairs, nails, teeth, skin, flesh, tendons, bones, bone marrow, kidneys, heart, liver, pleura, spleen, lungs, large intestines, small intestines, gorge, feces, bile, phlegm, pus, blood, sweat, fat, tears, skin-oil, saliva, mucus, fluid in the joints, urine.'”

As a pediatrician, I come into contact with these non-beautiful elements on a regular basis.  As soon as that diaper is removed, a newborn baby is guaranteed to pee.  Boys in particular.  Runny noses, drool, and ear wax make up a significant part of my day.  To paraphrase Thich Nhat Hanh, cute kids are made up of non-cute elements.

The Buddha’s instructions help us to let go of vanity and conceit with regard to the body.  The body is made up of beautiful elements and non-beautiful elements: hair, eyes, and smiles, but also brain matter, saliva, and sweat.  We’re less likely to become overly attached to external appearances when we consider that we’re all a bunch of walking leather bags full of bones, blood, and tissue.

The same sort of scrutiny can be applied to thoughts and emotions.  They can be pleasant or unpleasant, kind, generous, mean-spirited, or hateful. Everyone has roughly an equal measure of each, but it is human nature to tend to strongly identify with the few thoughts or feelings we perceive as predominant.

If we suffer from depression or anxiety, or if we are easily angered, we give ourselves a label and become trapped in our own conditioning.  Even before I had Sarah, before I faced the daily challenges of special needs parenting, I experienced periods of depression.  It runs in my family and I assumed that it was an inevitable and immutable part of my genetic make up, like height or skin color.  I now know that it is not an unchangeable trait and have successfully overcome the tendency.

Meditation helps us to realize that we are not defined by our thoughts and emotions any more than by our physical traits.  If we are mindful of the entirety of our experience, we come to understand that there exists a complicated, ever-changing interplay of physical characteristics, thoughts, and feelings that weave together to create this amazing, dynamic human being we identify as self.  This being changes from moment to moment.  At times the beautiful elements predominate; we feel happy and look great.  At other times we are overtaken by non-beautiful elements; we’re grumpy, depressed, or having a bad hair day.  When we let only a few of these factors define us, we limit our capacity for growth and change.

Contemplating the asubha can be especially helpful for special needs parents.  Parenting is hard.  There’s a quote going around Facebook:  “Behind every well adjusted child is a parent who thinks they’re doing it wrong.”  Add a special needs child into the mix and the self doubt and judgment really begin to pile up.  When Sarah is having a bad day emotionally and I lose my patience, I feel like I’ve failed the test.  When I’m too tired at the end of the day to complete all my medical charts, I feel incompetent compared to my colleagues.  The stress of raising a disabled child has taken a toll on my physical body as well.  I tend to reach for food when under stress and now weigh more than my ego would prefer.

The challenge is to remember that I am more than my failures and chubby belly.  With mindfulness, I can bring awareness to the times that I do respond to my children with loving attention.  I can forgive myself for eating an extra cookie or three.  I don’t have to identify with my short-comings any more than I would with my “…tendons, bones, bone marrow, kidneys, heart, liver…”.

Here’s a little experiment to help develop insight into the concept of non-identification:  First, bring your attention to the upper right side of your abdomen, the area of your liver.  Try to picture all of the chemical reactions taking place in your liver right at this very moment.  If you ate recently, your liver is actively converting glucose into glycogen for energy storage.  If you take medication or drink alcohol, the smooth endoplasmic reticulum in each liver cell is busy metabolizing those compounds .  It’s all taking place without your knowledge or control, every second of every minute of your life.  Now, try to identify with those chemical reactions.  My liver is so awesome.  I am a great metabolizer.  My glycogen is better than that other guy’s glycogen.  My smooth endoplasmic reticulum rocks!  Sounds a bit silly, doesn’t it?

Try to recall the last time you were consumed by a strong emotion such as anger or anxiety.  Think of the situation that triggered the emotion.  Notice how just thinking of the trigger can recreate the emotion, sometimes as powerfully as if you were actually in the moment.  Recall all the times you tried to control your mood or emotions and failed.  Thoughts and emotions come up all by themselves.  We have about as much control over them as we do our breath.  You can hold your breath for a short time, but eventually the regulatory centers in the brain take over and breathing starts again.   Similarly, thoughts and emotions can be held at bay for a short time, but, under the right circumstances, will re-emerge spontaneously, whether or not you want them to.

With practice, we can come to understand that identifying with thoughts and emotions is equally as absurd as basing our self-worth on our physical appearance or metabolic processes.  Each of us has good moments and bad, happy feelings and angry thoughts, beautiful and non-beautiful elements.  We don’t have to identify with or define ourselves by any of these.  We will be brilliant one moment and a complete moron the next, and it’s ok.  There is no test.  Nothing to pass or fail.  Just take each moment as it comes and do your best.  Forgive yourself for your failures and celebrate your successes, but don’t take either personally.

Metta

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The Five Remembrances

In the Sutta on Subjects for Contemplation (the Utajjhatthana Sutta), the Buddha encourages both monks and lay people to contemplate five universal truths, commonly called the Five Remembrances.  I have Thich Nhat Hanh’s beautiful translation taped to my bathroom mirror to read every morning.

I am of the nature to grow old. There is no way to escape growing old.

I am of the nature to have ill health. There is no way to escape ill health.

I am of the nature to die. There is no way to escape death.

All that is dear to me and everyone I love are of the nature to change. There is no way to escape being separated from them.

My actions are my only true belongings. I cannot escape the consequences of my actions. My actions are the ground upon which I stand.

When I first put these up my husband wondered if I was suicidal.  To a westerner unfamiliar with the Buddha’s teachings, these contemplations may seem morbid and depressing.  But, when studied as the Buddha intended, the Five Remembrances can help us develop a deeper appreciation for life, be more accepting of change, and even encourage us to set a high standard of ethical behavior.

Though it  might seem surprising, contemplating the Five Remembrances has helped me cope with the reality of raising a disabled child.

In June of 2003, shortly after the birth of our second child, Sarah, my husband and I bought a new house.  I was just starting a new medical practice and we were excited about beginning the next phase of our lives.  We were young and full of energy.  We bought a house Abundance of frogs.on an acre of land with a swimming pool and I envisioned many happy hours gardening and entertaining friends.  Three months after moving into our new home, Sarah had her first seizure.  She was just six months old.  By 2 years of age, she was having close to 100 brief seizures per day and we were calling 911 every two weeks for convulsions lasting as long as 45 minutes.  I had an acre of weeds and a green pool full of frogs.

So how does pondering my aging body and inevitable death help me cope with all of that?

Before life shoved me into the deep end of the special needs parenting pool, I thought I had everything figured out.  Career. Lifestyle. Family.  Suddenly, the fourth remembrance came along and hit me over the head with a brick.  Everything changed.

There is a mourning process that occurs when your child is diagnosed with a catastrophic illness.  The child you thought you had, the healthy, bright-eyed baby who would one day win a Nobel Prize, is gone.  You bury that child along with all the other preformed conceptions of how your life was supposed to unfold.  It takes you by surprise.  This isn’t how it’s supposed to be.  This isn’t what I planned.

Now I know.  All that is dear to me and everyone I love are of the nature to change.  The first four remembrances teach us about impermanence.  Don’t take anything for granted, not even your own health and youth.  You too will grow old, experience illness, and die.  Your children will grow up and leave.  Your pool will turn green and breed frogs.  Love your life, but don’t be too attached to it.  

What about the fifth remembrance?  It’s a little different from the others.  Here, we are reminded that, although all things change and eventually come to an end, the effects of your actions persist.  Do you treat others with kindness or are you quick to anger? Have you practiced generosity?  How will you be remembered by your grandchildren?  When I’m feeling exhausted after another long seizure-filled night, can I still greet my patients with a smile?  You can’t hold on to anything in this life much less take it with you.  So do good.  Help others.  Always remember that your actions are the ground on which you stand.

Metta

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