Walking the Wall

I have a few of these images of Thich Nhat Hanh’s calligraphy on the desktop of my computer and I click on them when I need reminders or to take a moment. One is the “peace in oneself, peace in the world” that is on my sidebar, another says “peace in every step,” this one I don’t usually need reminding of as life seems to do a good job keeping this at the forefront of my mind.

How you read it depends on what you bring to those three little words–some could see it as fatalistic, or as a statement that there is no afterlife–for me, it is short hand for “live life to the very fullest” or “make every day count” or “an eternity in every moment.” Sometimes it is hard to remember, though, and these three little words can get washed away in every day anxieties, overwhelming fears about tomorrow, petty angers, worry.

I remember the day that a doctor took me out into the hall of the ICU unit two weeks after my son was born and told me he had a fatal disorder and that he probably wouldn’t live much longer. I remember with crystal clarity the next weekend when another doctor took me aside and told me he wouldn’t live out the weekend and to call our minister or priest. Asphyxiating Thoracic Dystrophy, such a nasty sounding thing, it sounds lethal. I remember when my son was eight and so sick, I remember being told “We think he might have AIDs from blood transfusions,” then, “We think he might have Leukemia,” then, “We don’t know what is wrong,” then finally, “His bone marrow simply doesn’t work right.” Severe Chronic Neutropenia. Another lovely label that brought us every other day shots. I remember being physically shocked and inanely thinking “shouldn’t there be a one label per person rule?” I remember sitting in a doctors office in September hearing, Restrictive and Obstructive Lung Disease (we knew the restrictive, the obstructive was new as was the severity). I remember getting a call the next day that, yes, we can officially tack another label on, Scoliosis–well, at least it’s only a one word label. I remember sitting in a doctors office yesterday and looking at an x-ray that shouldn’t belong to my son and hearing “45 degree curve.” Scoliosis, 45 degrees (sorry, we cannot brace, sorry, we cannot risk surgery).

I looked at him today, tired from coughing, head down, and I worried about how heavy those labels might weigh on him. I know how much they weigh on me. Each time they were pronounced and verified and codified my world shifted and a host of fears and what ifs and worries scrambled and balled up into a knot in my stomach. Sometimes the every days pile up and it is so hard to remember to breathe. The thing is, I know to take one day at a time, I know that letting worry snowball and take on the form of a monster is wasting precious life, I know that amazing things happen and boys who are suppose to die one weekend end up being alive and kicking 17 years later, I know that right now, right in this moment, right in this eternity–this is where we are suppose to live and find peace, not in the land of what ifs and tomorrow’s problems. Deep deep inside I know these truths to be True. I know in a few days the rock in my stomach will dissolve, I know in a little while I’ll be able to breathe again, I know that soon my feet will find footing and we’ll go about living each day and each moment as best and as healthy as we can. Sometimes, though, it’s hard. Then sitting here looking at this post, a song from the Rent soundtrack called “Life Support” started playing in my head:

Look I find some of what you teach suspect, because I’m used to relying on intellect, but I try to open up to what I don’t know, because reason says I should have died three years ago:

There’s only us. There’s only this.

Forget regret, or life is yours to miss.

No other road, no other way, no day but today.

—

This is it.