Friday, October 18, 2013

'Nothing is permanent'

By Sandra Joy Stein

When my son was two years old, he played like most toddlers I’ve known. He built block towers and yelled in frustration when they toppled down. He climbed every structure at our neighborhood park and protested when it was time to leave. He complained when a beloved toy stopped working, broke, or the batteries ran dry. I decided, half-jokingly, that I would try to teach him the Buddhist Law of Impermanence—the notion central to Buddhist teaching that things change and nothing lasts forever. I suggested to my husband and other parents, with a strong dash of humour, that this law would ease our children’s sense of loss or disappointment, which would only intensify as their lives progressed. I do not claim to be a master of Buddhist thought, but it did occur to me that if our children were to know and accept the Law of Impermanence at a young age, it would increase their chances of living happy lives.

When an autoimmune encephalitis rendered my formerly healthy son severely neurologically compromised at two-and-a-half years old, my lighthearted lessons to him became my son’s own profound teachings to me. In two weeks he went from crafting percussion instruments out of anything he could get his hands on to thrashing around in a hospital crib. He went from exclaiming excitedly “Mommy! An upside-down M is a W!” to being non-verbal. He went from riding a two-wheeler with training wheels for miles at a time to being non-ambulatory and tube-fed. We lived in hospitals for 15 months before being discharged to home with near-round-the-clock nursing care, a wheelchair, a supine stander, a bath chair, and a rigorous home-based therapy schedule. Our former lives a distant memory, it was clear: things had changed.  

The type of encephalitis my son has (anti-NMDA receptor autoimmune encephalitis) actually has a good prognosis, with early studies showing the vast majority of those affected making substantial recoveries, some even after several years. Although my son has not yet “turned it around” or “woken up from this,” as his neurologists are wont to say, several of his symptoms (dyskinesias, hypertonia, spasticity) come and go. As soon as we think we’ve adequately addressed some type of pain, discomfort, or spasm, we are on to some new challenge in the bodily consequences of a brain in atypical flux. Many folks with this disease report sudden status changes, moving from perfectly healthy to critically ill and then non-ambulatory to walking and non-verbal to talking. We do not know what to expect every single day. We have to make decisions for the moment we’re in with some regard for the consequences of those decisions on an unpredictable future.

I have never had such an abject lesson in the Law of Impermanence than from my son on his journey through this illness. Everything I ever worked for, saved for, and hoped for changed in a way that laid plain the centrality of the notion that nothing is permanent. I realized that despite my attempts at understanding this concept, and even thoughts of teaching them to my then-healthy son, I had no real grasp of the true nature of impermanence until now. Parts of the teachings were brutal, like living for months in the ICU where, due to severe dysautonomia—a potentially life-threatening symptom of this disease—my son’s heart and breathing would randomly and unexpectedly stop, then resume, often requiring emergency resuscitation. We lived moment-to-moment, never knowing what the day would bring, while bearing witness to 11 families as they lost their children to freak accidents, random (and not-so-random) violence and disease.

Nothing, nothing is permanent.

For a time I found it impossibly hard to be so uncertain of what would happen next. Would he live to see the next day? Would he ever get better? I struggled with the non-linearity of his symptoms and agonized over my sense that he had hit the nadir of his course in this disease (which we were told by several doctors) only to realize that his condition would in fact get worse. As he grew more stable I began to worry about the next phases of his illness, wondered about the effectiveness of rehab and feared the potential for relapse, even prior to approaching any semblance of recovery. I wanted to know when I could reasonably expect improvement and whether my son would walk again, talk again, eat again, laugh again, smile again and play again. I wanted to prepare myself for all of the possible outcomes as if one of them would be the permanent, static conclusion to this total upheaval of our lives. All the possibilities and my inability to prepare for them were a kind of emotional torture. A wise friend suggested that I not try to solve any problems that I didn’t actually yet have. It was time to embrace the notion of impermanence as a mechanism to preserve what might still have remained of my sanity.

It is not an easy lesson to fully absorb and it scrapes against both practical strategies for getting through the day and all the lessons on futuristic thinking taught to me by my parents, professors and profession—to plan, save, schedule, anticipate, predict. When asked if I can attend an event, make an appointment, or get together with a friend, I go through the motions of planning with the knowledge that I do not know whether I will be able to show up. In reality, nobody knows whether they will be able to show up to anything in the future. Because of my son’s teachings, I just happen to know profoundly that I don’t know.

I now approach impermanence as a discipline, like one might approach meditation or yoga (neither at which I am particularly skilled). If I can adjust my orientation to the present moment, take stock of it, and interrupt any tendencies to escape it, I am able to accept the uncertainties inherent in all of our lives, uncertainties that most folks (myself included) prefer to ignore. Without permanence there is no "outcome" of my son’s disease, no before and after, just my son in the moment he is, on his extraordinarily difficult journey. His symptoms change so readily—sometimes his head is oriented to the right, his gaze fixed, his teeth grinding loudly and sometimes his head is in midline, his eyes focused and his jaw at ease. Some days he smiles, most days he does not. Some days he moves his legs. Most days he does not.

While so much has changed and continues to change about my son from a physical standpoint, his essence feels totally intact. He was always compassionate, always a deep thinker, always asking me what I was thankful for, all day every day from what I thought to be a surprising young age. And when I answered "I'm thankful for you!" he would respond "Awww, that's so sweet." He is still that being, locked inside a body he cannot at the moment control.

He has changed the way I interact with everyone and given me a greater ability to see beauty in all forms of humans, particularly those who we think of as disfigured or deformed. I walk through the world differently because of him—I am aware of much more and afraid of much less. I stare down my fear every day and walk that fine line of accepting his current condition and working to maximize his potential for what might be, all while striving to stay firm in the here and now.

Despite my earlier hubris at thinking I could teach my son a Buddhist principle that I had not fully grasped myself, my son is the one who has taught me how to surrender to the fact of impermanence, and how to live fully in the moment. He has taught me how to hang up the phone with the dysfunctional medical supply company (or any of the other pitifully dysfunctional systems that we rely on to get through the day) and to see that he is, at the moment, stable, breathing and peaceful, or thrashing, screaming and in distress. At our most difficult moments, I find great comfort in telling both of us, “It won’t always be like this.” What it will be like, I cannot tell.
 
Sandra Joy Stein is an education and leadership consultant, writer and poet who lives in New York City.
 
 

Reactions:

11 comments:

Sandra,

Thank you for this powerful piece you've shared with us. Your son is beautiful-his essence will always be, permanently!

Everyone should read this. In the world. Thank you Ravi and Sandy for your teachings.

Gorgeous.

"I stare down my fear every day and walk that fine line of accepting his current condition and working to maximize his potential for what might be, all while striving to stay firm in the here and now."

I love this.

Wonderful article - Thank you for sharing with us

Beautiful boy. Beautiful mama.

This is beautiful. Thank you.

You write beautifully and we know the feelings too.

Your story is inspirational. Thank you for sharing your story. I will pray for his recovery.