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I remember multiple times I have said or written about wishing that I had a remote control for life with a giant pause button on it. Since the advent of the DVR for recording television, my whole family moans and groans if we are at a hotel and we have to watch TV without being able to pause it, rewind it, fast forward it. Sometimes life barrels forward at such a speed that we just need to be able to hit pause, breathe, and reevaluate it. Thursday morning before “the surgery”—and this day had taken on the quality of quotation marks or capitals giving it weight and substance so that it stood out bold and powerful as The Surgery—we were given a pause button.
“You can face anything properly, elegantly, when you meet life where it is, in the moment,” Ajahn Sumano Bhikkhu, wrote in Meeting the Monkey Halfway. I got this Daily Dharma (a dharma is a Buddhist teaching) on my phone at 4:30am when I was getting ready to go to the hospital. With Michael’s reaction to the platelet transfusion and the way his body struggled with a little fluid in his lung due to the reaction forced us to meet life right where it was, right in that moment. It stripped us of the ability to sugar coat the surgery with our hopes and dreams, it stripped us of the ability to wrap it in wishes and make it the answer to all his medical problems. We were forced to meet life where it was in that very moment and pause and ask ourselves, are we meeting this moment of Michael’s health in the right way? The quote ended, “We live life wisely and compassionately in the beginning, middle, and end.” In that very moment when we had to see his health and the illusion of The Surgery as anything but a surgery with serious ramifications, we were given an opportunity to choose again, to make certain that our choice was the wise and compassionate one and not one in which our grasping at hope had the great potential to create suffering for Michael and ourselves.
While we may continue to struggle with the issue of whether to go forward and pursue a surgery or not, I am grateful for that moment that allowed us to pause and rethink how we choose to go forward and meet the difficulties that lie ahead with Michael. It has reminded us what we have believed from the day he was born, that quality of life is precious and, for us, more important than quantity.
We drove away from the hospital three days latter with a tangle of emotions. There was relief to be leaving the hospital with both my children talking in the back of the van, there was a strange sense of let down that the day we had pinned everything on had come and gone and we were left not knowing what tomorrow holds. Still, we have been reminded not to pin our hopes on a specific day in the future or a specific event like a surgery and had chosen to meet life where it is and life is ever only in that very moment.
I don’t know what it means to feel like I am different from everyone else and that I don’t fit in with the world around me. I know that Michael does, and that it has been something, over the years, that has weighed on him. Jeune’s was so rare, we met one little boy when they were toddlers, another little girl when he had his rib cage expanded at five years old, and one other little baby girl when he was young. It meant a lot for Michael to meet Clarke, I know I already said this before, but I didn’t realize how much until I read an email he sent to Clarke last night:
I’m so happy that I met you, you’re a special kid you know that and it makes me feel better that there’s some one out there that’s just like me, and I hope that we can become great friends. I feel your suffering, its not very pleasant because I get many of the same medical care as you do, the shots the tests and more shots-it’s horrible and its not fun at all, yet we get thru it all the same. (posted with his permission, of course)
They are both special–and they do get through it all the same, and I’m proud of both of them and I know that the world is a better place with them in it–and I’m a better person for knowing them.
I used to have the whole fabulously integrated uniform of a super hero. I had the armor plated jumpsuit, the all important mask settled carefully into place so as not to reveal my true identity, and a cape that fluttered behind me in the wind. I knew just what to say, just how to act, I was the mom that doctors thought was a nurse because I had it all together, I was the mom that sat in on procedures because I would not fall apart, and I very rarely cried in front of anyone. I’ve cried in front of three friends in the last week and I want to know–who took my cape?
Of course, I was also the one with the terrible “irritable bowel syndrome” thats true medical description was “woman who won’t cry or talk about her emotions or fears and so her body is forced to release all the pent up emotions SOME way so please pass her the Immodium and make sure it is the Advanced formula.”
I know that the way I handled the stress of Michael’s illnesses the first few years of his life was not healthy, I am so much older, and so much wiser, and I have learned so much–so why do I find myself digging through the back of my closet for my mask? I’ll do without the jumpsuit, and really, you can keep the cape, but I need the mask! I find myself annoyed with the world, irritated at the grown women at the mall stealing $6 earrings–really? you really MUST have those earrings even though don’t you realize there are children in the world with serious medical issues and PLEASE just let me buy you those earrings if they are so vital. I am irritated that our whole world has stopped and we are holding our breath yet again and waiting for it to, please, start turning–and the rest of the world keeps moving.
Still. I catch myself breathing little worthless staccato breaths and I stop and take a breath. I am kinder to myself this time around, I look in the mirror at tired, puffy eyes and tell myself it is okay, it is okay to be sad and afraid and it is okay to not be “just fine, I’m just fine, it’s all okay” to myself or to the world in general. It’s also okay to laugh, to stay up too late and watch TV with my kids, to dance around the house singing “I’m a Survivor” with Destiny’s Child while a ridiculous lump builds up in my throat and my daughter laughs and my son groans at what he deems to be the most irritating song ever–it’s okay.
I found a picture the other day when I got the sudden and uncontrollable urge to clean up a little shelf under my records that is full of a mess of everything I didn’t bother to find a place for–even though no one can see it and it isn’t bothering anything but who needs to work on that paper when I need to clean this space out NOW…now would be the time for that breath.
It’s a picture of my grandfather holding me when I was a baby and even though he died when I was eight and he never knew my children I know that he would have loved them so much, and I miss him painfully and inexplicably.
I’ve been thinking a lot about coping the last few weeks, and this is what it looks like. It looks like a woman who is going on too little sleep, cries more than usual, but also laughs and dances, who forgets to breathe but then remembers, who snaps too quickly at her husband but loves him and is glad he is here. Coping looks like me with no armor plated jumpsuit, no cape fluttering in the wind, and no mask. Just me.
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(Note: Originally posted in my personal blog but feel it is relevent for this one as well, still haven’t sorted out how I’ll deal with that in the future)
I know that it has been a long week for everyone, last night Michael was talking about how he couldn’t understand why so many people were calling and emailing–he just wasn’t that important, he thought. I told him that he would just have to accept that fact that there are so many people out there who love him and care about him being as healthy as possible.
I guess I didn’t want to leave things on the last email of images of a curved spine and crazy right rib cage–we are all trying to make sense of what do do with all the information we gained this week and will still be trickling in. We’re thankful that we have it as information is paramount to taking the proper next steps–but in many ways some of it is information we’d like to erase from our minds because, at least for me, it makes it difficult to sleep at night–it is all very overwhelming. But there is more than that and I tried to sort that out in an essay, and as I know not all of you being updated all week read that, I thought I’d send it along:
IMPERFECT BEAUTY
Even though I have more reason than some and less than others to understand how tenuous and fragile life is, how precious it is for its very fragility–I forget sometimes. I also forget how beautiful and strong the human body is–even more so in its flawed forms. Like trees struck by lightening, damaged, deformed, that twist around and grow towards the sun into stunning sculptures of resiliency. There is a Japanese term “Wabi-sabi” that identifies the beauty in things that are “imperfect, impermanent, incomplete”. It’s more than something that is imperfect but still beautiful, but an understanding that some things are even more beautiful because of their imperfections.
We live in a day and age where a mother can sit in a doctor’s office and look in stunning, 3D detail at the bones and organs of her son–can watch it spin and turn at the click of a mouse, travel down the trachea and into the lungs and see all the details once upon a time people never dreamed of seeing–and maybe were never meant to see. Something shifts, painful and raw, in seeing with such clarity the tangle of abnormally formed ribs and a spine once straight curve, twist, and bend. In the wake of the pain, though, in the long pause of a breath stifled then regained–there is an awareness of awe. That a body struggles against such odds, shifts and adjusts itself, accommodating and maximizing its strengths. One airway lost and the other takes up the slack, breathing in and out with a steadiness of purpose. “Put one foot in front of the other,” Kris Kringle sings to the snow monster, and the body does, just moves along with what is and works to the best of its ability. There is a simple, graceful beauty in the curve of a spine–an imperfect, albeit dangerous, beauty.
It is no wonder that Buddhists love the image of a lotus blossom, rising out of the mud, fed not by perfectly balanced soil and fertilizers but by the muck at the bottom of shifting, murky waters. It reminds me of the medieval concept of the wheel of fate and the idea of people tied to that said wheel, sometimes swung up to good fortune at the top, sometimes dropping down to bad fortune at the bottom, sometimes on the upswing, sometimes on the downswing. I think we often live for those moments of perceived perfection at the top, floating like the lotus and soaking up the sun–but life isn’t just the top of the flower, it’s down deep in the roots and the muck too, and in between on the long stem shifting nutrients back and forth. Life is the high moments and the low moments and the beautifully boring moments in between. It’s in a daughter’s turned up nose and cleft chin and ginormous big toe; in a son’s bright blue eyes and graceful hands and imperfect body. Life is all about kid’s dressed up and lip syncing to “Secret Agent Man” and a brother and sister leaning their heads together on a hospital bed playing “Final Fantasy” while waiting for one to go back to an operating room–life is dirty and painful and sunlit and joyous and sometimes it’s all of them tangled up into one.
Paul Simmons, who had, and eventually died from, ALS, wrote in his book Learning to Fall:
Don’t talk to me about flowers and sunshine and waterfalls; this is the ground in which life sows the seeds of our fulfillment. The imperfect is our paradise.
Let us pray then that we do not shun the struggle. May we attend with mindfulness, generosity, and compassion to all that is broken in our lives. May we live fully in each flawed and too human moment, and thereby gain the victory.
