The Difficulties of Being

03/21/12      

There is something that needs to come out.  I’m not being mysterious, I have no idea what that something is.  I often have the sensation that my writing is organizing itself in my brain long before I approach a keyboard. Usually there is a general theme, but each individual idea is a little unruly and they all wander around unable to line themselves up or form effective working groups. My thoughts are like kindergarteners, vaguely aware that they should be doing something, but scattering away, distracted by a leaf fluttering by the window or a colored piece of paper left on a table nearby. My job is to notice when the gang is all there and gently attempt to make them hold hands and line up single file.

It’s like noticing before I get a migraine in that I have a felt sense of a migraine coming on.  I couldn’t label or quantify the symptoms at that point, and it feels a little presumptuous to name an event that will take place in the future before I have a hint of pain. Usually, because I try to be logical, that means that I delay taking migraine medication. Since migraine medication is most effective at the first sign of a headache; by the time I am there, I am unable to open my eyes or leave my bed because any light or sound is a bomb in my head. 

What is the first sign? How do you know, in advance, when you are there?

I don’t usually inform friends that, “I have a migraine coming on,” although I am curiously not as shy about predicting “I have an essay coming on.” This has been my refrain for months now. I have sent myself by email little thoughts or expressions that captured something important for me at the moment. Although I can see the words all neatly organized together when I open my email, they no longer make any sense to me; even I wonder what I am babbling about. I think that is probably a bad sign.  I try to reframe the image of kindergarteners into a vision of the goddess Athena, springing forth from Zeus’ head. I want something to spring whole from my head. I want everything to make sense. Instead I have fragments of sentences, words that felt important at the time, a list of what appears to be random neural firings.   I have a sense that there is something important rattling around in my cortex, but it remains pre-verbal, inaccessible as a whole.

I have an old friend who wrote recently to ask how I am. Not really how I am, but just to check in, send birthday wishes. More and more I find myself not just grumpy about (as I’ve been in the past), but actually unable to offer a pithy phrase, or socially-sanctioned response to many social niceties. There is so much going on at one time, that to pick one descriptor out of so many possibilities seems impossible.  It’s like my cognitive threads all got tangled and now I can’t find just one line to follow.

How am I? I am…noisy. My brain that is, my brain is being very noisy. This week was my birthday and, as is the case when women age, quite a few people have asked me how I feel about it. I look around in my head for an honest answer and find that I feel nothing about it.  The implication of the question is that women want to stop the clock- lest the inevitable physical signs of age become more apparent. Lest they slow down, or become, god forbid, old.  Look, I use a walker. Sometimes a powerchair. I bought my first cane in my early 30s. I need to sit down frequently before my legs give out, and stand up just as often to prevent my muscles from stiffening. I drive a mini-van with hand controls and a wheelchair lift, for god’s sake. Crows feet? Sagging skin? I am always aware of the clock ticking down; my birthday is not necessary to remind me.

Now the title makes sense!! Days ago I sent myself a message about the title to the writing that I would inevitably do to get the kindergarten class lined up: The Difficulties of Being.  It came to me after a conversation about being unable to find an accessible meditation center where Me-on-Wheels might join a community. I titled the idea, “The Difficulties of Being [Buddhist].” I immediately recognized that “Buddhist” was too narrow and narcissistic, as there are so many things that are so difficult to be.  Like a dog with a bone, my mind grabbed it and ran away to gnaw. It is not just about categories, and the sentence doesn’t need a subject.  Essentially true on so many levels, sometimes it’s the being itself that challenges me. In response to my old friend’s question: Being is challenging me, that’s how I am.

To me, this is not a depressing thought. I can hear my sister sighing now; Sandra urging me to increase my dose of anti-depressant medication. But there is nothing wrong; I am merely being [challenged]. I am being [productive]. I am being [happy, most of the time; except for when I am not, which is often].  So is everybody else. The title should be: The Difficulties of Being [Insert Your Name Here].  Who isn’t struggling?  Are there people out there for whom being is easier?  When someone responds “Fine” after an acquaintance hurriedly shouts, “How are you?” before disappearing around a corner; could they actually just be fine?  It seems too simple, too “Leave it to Beaver.”  I am always tempted to respond to the casually tossed “how are you?” with something like: “feeling unworthy,” or “mildly anxious,” just to see what happens.  “How are you?” has become an acknowledgment, a friendly salutation, but no longer a question.  It always confuses me, because how I am, is very complicated.

I wonder if this is truer for people with illnesses, or disabilities? This idea does depress me, but I still think I am on to something. I’ve become so closely identified with my body, and attending to the drip-drip-drip of shifting disabilities, that I would have to refocus my energy in order to report out alternative, independent thoughts. And refocusing just requires so much energy that I usually opt out.  The most honest response in many circumstances is something along the lines of “I am focusing on lifting my foot so that I don’t fall, worried about my class not being interesting enough, hoping I was on schedule with my medication, wondering if I have time for a smoke, and remembering with regret about someone that I forgot to call back.”

Maybe this is one of those MS silver linings that I hate to admit to finding.  Maybe, just maybe, the fact of living inside this body makes my relationships more real than they might be otherwise.  I don’t have time for small talk or paying attention to people I don’t care about when coordinating movement takes most of my attention. I have had to painfully cull the relationships that couldn’t make the leap from the old me to the new. How I am is always complicated now, and I’m more cautious about with whom I share it.

I, like all of us, am a gazillion and one things at a time.  I am grateful and angry, optimistic and hopeless, humbled, awed, and disappointed. I contain the universe; am a daughter of the Big Bang.  And yet my existence, my identity in this life in this body, is as ephemeral and insignificant as a speck of star dust, hurtling through the galaxy. One set of circumstance, in hundreds and thousands of lifetimes.  It seems absurd to have this compulsion to piece it together- to make it make sense.

Yet, I am riveted by the question of other possible outcomes. I want to know who I would be if I didn’t have MS. Would Me-without-MS have a cheerier outlook? Would I be able to answer “How are you?” with “fine” and I’d mean it?

I asked my mother if she thought I’d be different if I didn’t have MS . This is the extent to which I am haunted:; hounded by the ghosts of other versions of myself.  There was a long pregnant pause before she replied: “Well….You’ve always been different honey. That is how your mind works.” Then she, who we both agreed had a genuinely rosy outlook and felt fine being “fine;”  she reminded me that we can’t parcel out pieces of identity as if each were independent of the others.  Identity is the whole of so many different parts. Me-in-a-different-body is not possible to know.  Me-in-a-different-body does not exist. She has never existed, and will not exist in the future. It’s not that I am being cheated of the life that I thought I’d have. I have this one, and it is what it is. I am who I am. 

Identity is a tricky beast. You think you nail it and it slips out of your grasp.  The evolution of identity is an unceasing process; requiring perpetual re-adjustments to who we are now.  I think I’ll write that friend back and say, with all honesty, that I am fine.

God in my spoon

My 5-year has been talking a lot about “God” recently. The comments are always off-hand and slipped in at moments I haven’t been able to immediately address them.  This morning at breakfast, he mentioned that God lives in the sky.  Where are you learning about God, I asked (surely not at home, where I involuntarily cringe whenever someone says anything that rings of the Catholicism with which I grew up and came to vehemently reject).  “God lives in the sky with his son and he protects us” was his reply. 

Pause, take a moment Mommy, because this has to be good.

“Some people believe that,” I offer gently. “I believe that God is everywhere, and inside all of us.” 

“Inside me? Everywhere?”

“Yep, even there, in Luci’s spoon. Luci is eating God.” (Why, oh why, do I have to be a smart-ass, even when my child’s basic understanding of the world is at stake?)

Rudy thought that was funny, and, now done with the conversation, stuck his head into a large glass hurricane vase on the table and coughed a few times.  “Stop coughing on God” I joked. He lifted his face out of the vase and turned to me, serious and adamant: “God lives in the sky and protects us. He is not in this bowl.”

Think fast Christina.  “Christians believe God lives in the sky and protects us. Mommy is Buddhist. I believe that God is inside of each of us, that we are God, and we try to live in a way that honors and respects the God in each other and everywhere. There are a lot of different ways to think about God. As long as they help you to be a good and kind person, they are all fine. None of them is right or wrong. It’s about what feels true to you.”

Blank stare.  Then, “Which race car do you want to be? I’m blue.”

I object to the fact that Buddhism is so much more difficult to distill down to simple, happy, comforting constructs than Christianity.  God in the sky who protects us is just so much easier. 

A year ago, Rudy found a dead bird on the sidewalk during a walk with Sandra and Luci.  He came running home to get me (apparently believing I had some special affinity with deceased wildlife.) I got a shoe box and rubber gloves and hobbled down the street with my walker and my big-eyed boy to retrieve the bird. He was sad about the bird and was hoping to keep it. I saw a golden opportunity for religious education.

“It’s important that we thank the bird for sharing the world with us, and then bury him so he can rest and be free. He’ll come back to the world again, in a different body, but first we need to help him finish this life.”  Wordless with grief over this anonymous bird, Rudy picked a site in our former flower bed and starting digging.  [Knowing this area would soon be cemented over, I thought it was an excellent choice and brought out the trowels.]  We got him in, wrapped in paper towels, and covered his grave with a small pile of beautiful river rocks.  We lit a candle (one of those tall cylindrical prayer candles with a picture of the Virgin of Guadalupe glued to the front), thanked the bird for sharing the world with us, and offered our hopes for a peaceful transition and an auspicious reincarnation.  I was pleased with myself for working in a lesson on reincarnation, gratitude, and death as merely a transition.  Nice job Mommy.

Later, Rudy explained to a guest that the bird we had just seen fly into our tree was dead, we had buried him earlier. “Birds can’t fly when they are dead. They just lay there until they go to Heaven,” his wise 6-year old companion told him authoritatively. He looked at me, saucer-big eyes, hoping for a rejoinder. “Well, getting a new body takes some time. That bird in the tree is probably not the friend we took care of this morning.” Two little faces, perplexed and maybe a little bored, stared back.

“Who wants a popsicle???”

Later I mentioned it to a friend with a son Rudy’s age. She said her son was also asking about death.  She tells him that you go back to live in heaven with God, like you did before you were born, with all of the angels and big fluffy clouds.  So simple. So comforting.

I, too, want to pass on easy answers and a big kind Daddy who welcomes us back and lets us lounge on the clouds.  The Daddy God. When did that stop working for me? When did it all get so much more complicated?

People often assume that I must have thought (or be currently thinking, I am not sure), “Why me? Why did I get this terrible disease?”  I respond, in all honesty, that I have never had that particular form of self-pity. 

Why not me? Random shit flies in a chaotic and expanding universe. You try to duck. Sometimes you get hit, sometimes it is someone else who didn’t see it coming and don’t have time to get out of the way.  No, I have always thought “Why not me? Why would I be so special as to avoid the frailties of being human?”

The human brain searches for meaning, structure. A famous existential psychologist and concentration camp survivor, Irvin Yalom, once said “When we have the why, we can live with almost any how.” What is my structure, the construction of meaning around difficult events and circumstances?

Any meaning I construct is frail and wobbly. Ha, my structure needs a cane! The furthest I can get is to believe that what I do with this illness is more important that why or how.  Buddhism tells us that pain is unavoidable: We are in this earth-life to evolve by transcending the inherent suffering in the human condition. Like the lotus, rooted deep in the mud, in dark and frightening places where they may never be seen by human eyes. The lotus blooms a defiant 15-18 inches above the muck in which they grow, asserting their inherent perfection, their luminosity, regardless of a largely indifferent world. It’s an explanation I can tolerate; not saccharine, but not as hopeless as random bad luck. 

Yet it is impossible not to miss the Daddy-God, the option of appealing for mercy to a loving and all-powerful entity.  “Our Father, who art in heaven….This f*&@*ing sucks and I don’t want my kids to watch me suffer or miss any tiny moment of joy because their mom is sick.  How about a little somethin-somethin over here?  A tiny miracle. I promise not to tell, because then everyone will want one.  Too much? I’m willing to cut a deal. Give me my leg back and I’ll keep the searing arm pain.  Trunk spasms for fatigue.  Electric feet jolts for use of my writing hand….”

The refrigerator hums. I can hear my children breathing. Sitting here, on a meditation pillow in front of my laptop in the dead of night, I can be luminous when nobody is looking.