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.

Dumb Growls

Dumb Growls

02/04/2012

This phrase, that I don’t even know the meaning of, has been floating around in my head for days. Close to the bone. It feels like I am living so close to the bone these days. We all are. Like the cushion has been sliced away, and my vulnerabilities are right there on the surface, like skin. When your body is unrecognizable to you, there is no other pretense. No artifice seems possible, as I observe my central nervous system devolve.

Have you ever had the opportunity to watch as a child learns to walk? They are tragically unsteady; each of the million tiny movements required to walk is brand new and requires total attention. Distracted for a second, a foot turns, balance falters, and they land- diaper on floor again and again.  Their brains are making connections faster than the speed of a blink.  The neural coats are not quite on yet, and as a result the transmission is choppy. So one foot forgets to lift, or it lifts too enthusiastically and throws the whole procedure off kilter. I fully accept that I am a complete science nerd, and I love to watch as little brains myelinate, and movements become more certain, more precise, over just a few years time. My son is working on snapping his fingers, and blowing bubbles with gum right now (not, primarily, simultaneously). I find it endlessly fascinating as he cognitively understands what needs to take place, but struggles to make his body complicit with these novel instructions.

When he was just learning to walk, I was busy un-learning how to complete that seemingly effortless symphony of motion. As he became more sure, I hesitated more. As he grew comfortable with a narrower stride, my legs were started to look like they were balancing a very pregnant woman with a pumpkin on her head.  Not graciously, either.

My son has become a graceful creature, all raw muscle on a tiny little frame, skin so close to the bone.  I, on the other hand, feel like an injured hippopotamus moving through space.   In a wilderness film, I’d be the animal separated from the pack to provide sustenance to the tigers.

That last sentence sounded funny in my head, but when I read it out loud seemed so tragic.  This is my tragi-comedy. What if, before we were born, our souls lined up and reported what movie genre they would like to choose for this incarnation? Many would choose romantic comedy. Some would choose drama, or comedy. If your soul was late getting in line, there might only be horror or suspense story lines left. I came in somewhere in the middle, had to have that second cup of coffee but at least my alarm went off. This is what I chose: Funny in my head; tragic in body.

Recently I hung out with a very dear friend in the middle of his worst nightmare.  This particular nightmare is the gift that just keeps giving; full of tangles and twists that drop the ground out time and time again. This friend believes in science. Physics, actually. He’s all about the time-space continuum and it’s ability to bend. He believes in emptiness, at the core of matter; the black hole. It brings him peace. Electrons, circling protons, the illusion of solid matter.  His presence, watching him move through the wildfire swallowing everything he thought was real, is magnificent. He has never been so present, although he experiences himself as cut-off. He is raw, close to the bone, and it allows me to know him in a way never possible before.  He make me wish that I too, believed in quantum physics. Black holes seems probable, sucking in the life around them. Some of us live in the neighborhood of black holes, and spend immeasurable energy resisting their gravitational pull.

Another friend, another virulent autoimmune disease. Her husband leaving her after 2 decades of shared history. She only speaks of him with love. Her compassion and enlightenment makes me weep when she talks to me. Who is this person, who can transcend such horror? Who am I, who cannot?

My friend Kelly, about whom I have written before many times, the one with AS- possibly the most tragic of all of the auto-immune disorders in my circle, has recently been diagnosed with cancer. Really universe? Really? Shouldn’t things be somewhat evenly distributed among the population? Even just a little?  She’s one of the kindest, most gentle and consistent people I have ever known. If I was offered a break by whomever might be up there, making these decisions, I’d give it to Kelly.  I don’t even believe there is someone up there; offering punishments, rewards, and occasionally a get-out-of-jail-free card. But I am angry that there isn’t, and even angrier if there is.

I don’t want to find the bright side. I don’t want the light to creep in. I want to stew in my own little cauldron of self-pity and rage. Perhaps for this reason, I have been unable for a month to complete this essay, and it’s companion piece, two treatises on darkness. I am determined not to let the light slip in, not to appear “resilient.” I am so fucking tired of being resilient. I just want to be small and ugly and relentlessly disappointed. I don’t want to suck it up and believe that I can teach my children about coping, compassion, and moving forward regardless of the road bumps (or 15- car pile-ups, as the case may be).

Is this a 15-car pile up? It definitely feels like that- at least part of the time. Are there bodies flung all over the freeway, their bereaved making the primal scream, the universal and unique sound that escapes when we lose someone we love? When I found my beloved German Shepherd, unexpectedly dead, years before it should have been “his time,” the wails that I emitted over his lifeless body sounded like they came from someone else. Somewhere else. An endless well of grief, an animal sound that I had never before heard, much less emitted. And I didn’t care. I howled and screamed, completely taken over by grief, the primal scream of loss.

Later that year, when I lost my first baby, there was no screaming. There was only silence, like I had been caught in an avalanche. The silence roared; everything else was drowned out. I think I cried silently for months. Every night, she was still there in my dreams. In my dreams, I safely contained the new universe. The silent weeping would start the minute I awoke; reality assaulting me during each moment of consciousness. My world became enveloped by silence, the peculiar silence of bearing the unbearable. I was honestly perplexed that my heart was still beating, and I didn’t care enough to wish it wasn’t.

Maybe that is what I am trying to accomplish here, in language where I want desperately to demonstrate my grief, in language that stubbornly refuses to acknowledge hope. I have never howled about the loss of my body, the body that I had lived in for so long, the body I never considered would change into unrecognizable form. The howl is something language cannot do. It comes from a place beyond language. Jeannette Winterson writes that “Grief leapfrogs over language and lands in dumb growls beyond time.”

This is my dumb growl. This is my testament to everything I have lost, to all of the people I love who bear the unbearable, every day. We blend in, ghosts among the living, ghosts among those who have not yet, or are not currently, in the process of losing everything that makes sense. Inexplicably, the world hasn’t stopped, or even slowed, as we howl and weep. There are children who need us, partners suffering in their own silent hell; family, friends, and even strangers who need us to be okay. So we suit up in our armor of the way we were and move through the days. The growling ghosts stay mostly out of the sight of others. It is hard enough, watching someone you love suffer, and the losses are shared by everyone who loves us. It would be unthinkably selfish to share this too: This desperate grief, the unraveling of who we were, the empty space of loss and outrage.

It is not that there are not other things too. My children are miracles whom I have the honor to watch develop every day. My partner is the strongest person I know, who misses nothing, but keeps us afloat anyway. For these and others, I have to walk through the days, I have to keep accessing the me that they recognize; the person who suits up and shows up every single day (albeit with more “breaks” to give the ghost some room to roam.)

Kelly- I know you are howling. I know you put on a brave face, I know you continue to function in the world as everything crumbles inside of you. Me too. There are many of us out here. I hear your dumb growls. They sound just like mine.