Thursday, March 22, 2012

The Difficulties of Being


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.


  1. Dear Christina, this is a superb piece of writing and thinking. The writing is crystalline, and the thought process has produced a profound insight: you are not being cheated out of your life, you are living the life you're supposed to be living: your life. You are who you are, and you are also becoming who you are. We learn and grow along the way. And with this life that you are given, you can do a lot of good in the world, such as sharing a fine piece of writing like this. I bet that the final sentence is not what you figured you'd be writing when you started; that's the joy of writing: we don't really know what we think until we write it down. But it's a wonderful final sentence. It's a blessing.

  2. Hey T:
    Just checking in on your blog. Wondering where you are...

    I completely support your ambivalence about not just answering "fine" to the "how are you" greeting. I routinely answer other than "fine" and don't care if it startles things. Our relationships are two one-dimensional with technology - sometimes the 'not fine answer' helps remind people of the 3-D of me.

    I hope you keep using the blog as a place for your writing. I like to hear how you are "fine" and "not fine" alike.


  3. I love your writing. Please continue to blog. I have felt many of the things you have described and on a similar (but different) MS journey. Your way with words is musical like a favorite song that you don't know all the words to but want to continue singing along with. I have endless admiration for you.