Nom de plume

A pseudonym.. A nom de plume. Hah! It’s so George Eliot, so narcissistic. Who cares?  Only my old self. The one before MS. The independent, self-reliant, fearless former me who still shows up at work and pretends she is still in charge. 

Why can’t I write as myself? Which self? The hilarious part here is that as a very healthy, very naïve, very young psychologist, I used to work with clients in adapting to chronic illness. I barely recognize her.  It was all so (clean) back then. Here are the techniques to use for chronic pain, use these for acute flare-ups, develop these skills for improving your social life despite your understandable desire to keep the covers over your head…..

The right set of skills, the requisite knowledge, you are good to go.

Maybe I missed something. Was there a chapter of the manual I forgot to read?  Because my very best efforts at mindfulness, my careful training of my mind, fails to diminish, or even slightly alter, the suffering.  Twenty-six year old self-- you write a blog. It can be haughty and academic and even condescendingly well-meaning. But my 26-year old self can’t; She’s busy, telling people how to feel better, telling people to buck up.

I, on the other hand, am available. I am at home, trying to recruit enough energy to both play with my kids and clean-up the house a little. Cleaning up the house! Is this what I miss? Really?

Really.  That self back there, she never once considered that at any time in the future she would have to negotiate carefully the choice between 10 more minutes in the pool and trying to push a vacuum cleaner. She would have joked that she is lazy anyway.  Lazy is a gift, an entitlement you don’t notice until you no longer have the luxury.  Sometimes I pretend I’m lazy now, to hide that I would not be able to stand up or do something that is entirely pedestrian.  I want to be able to clean my own house. Even one room.  I forgot to notice how easily I used to move through space.

So-- my name. I have the one name that has been me my whole life. That is the me that goes out into the world each day with determination and grit.  That me gets things done.  Well, as long as those things can be done from a chair, for which I am in a great profession. And there is the other me. The self  that is available for writing this blog. The one who is uncertain and embarrassed, confused and vulnerable.  Vulnerability is so not me. Not that me anyway.

Feeble as a centurian, scared as a child, trying to build an identity over the bridge between then and now. Not separate entirely, but at a polite distance. Adjacent to the self I thought I would be. How long does it take for identity to catch up to reality?

September 5, 2011

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.
 

Welcome to my imaginary blog

Does anyone else think this is hilarious- in a dark and painful way?

I was doing something important to me  (more on that later). Yes, yes, I was over-doing something important to me (my rehabilitation scientist sister in my head). I don’t do it unless I overdo it so that is really beside the point….I was doing something and my body was not cooperating. First my legs, then my hands. Being as I am sort of accustomed to uncooperative legs, my hands were the important part of this task. But they checked into Hotel California and you know the rest of that story.

I found myself a weeping heap on the floor, with my 1-year old daughter looking at me confused (was this a game? Should she pretend to cry too?) and my sensitive magic boy running over to hug me. Luci sat in my lap and Rudy hugged me tightly while I melted into an MS-y puddle on the living room floor.  I tried to explain, 5-year old style:  “Have you ever been really frustrated because your body wouldn’t let you do something you really wanted to do?” He hugged me more and said “I love your belly. I love your hands. I love your legs. I even love your guts.”

Really, you’d have to have a heart of stone to not sob even harder and more uncontrollably after that kind of guileless, authentic expression from a 5-year old who is usually a dinosaur and not a boy at all.  How can we start out so kind and become so hard (more on that later, I’m sure)?

So my partner rescued me and my children from a rapidly devolving scene of desperation and grief.  I said to her: “I should write that on the imaginary MS blog,” only this time, I think I actually will. 

So I grab my laptop and escape from the scene of the melt-down. I get ready to write the first entry in my imaginary MS blog that I might be about to make real, and I realize my hands are so weak and so burn-y that I cannot type.  My life-line.  This is what I do.   This is how I process.

Some healthy part of myself, well, healthier than the distraught toddler who wanted to throw the hapless computer in the pool, whispered a reminder that I have dictation software. Imagine! Dictation software bought for me by the college where I teach because I was having trouble typing. For over a year I carried the mic in my bag, strictly out of guilt, because I had never set the program up (sorry taxpayers). I had never set the program up because although I have adjusted (kind of) to a leg brace, sneakers, a scooter, a powerchair, a minivan with a wheelchair ramp, wearing ice that looks like a bullet proof vest all summer (6 loooong months in Arizona), yearly catheters in my arm for steroid “pulses” and a thousand other indignities, I could not bring myself to get help typing.

It doesn’t end there. I wish it did. This would be an essay about coping and adaptation and it would have a happy ending and I would be whole again.

I found the mic exactly where I left it, and plugged it in. I started talking to the computer. Just the voice-training module.  Just the training module. But nothing happened. Nada. Nothing registered. The computer looked at me blankly. I talked louder. I enunciated better. I cursed like a sailor. Blank stare. The program I had ignored for so long was ignoring me. The lights are off. No one is home. There is no f*^&*ing dragon recording my surrender in text.

It’s typing or nothing. Typing or exploding from the pressure in my head of trying. Trying to type; trying to clean; trying to be a regular mom; a regular person; a person who doesn’t want to collapse every minute from the effort of trying so hard to do anything.

One day we will live in a world where our thoughts are immediately translated into what we want to say, the way we want to say it.  In this world, I need a five year old to open bottles for me and my legs are about as viable as the national budget. Said 5-year old is scooting out of the room right now on his bike, my grabber tool in hand to play with and torture his sister.  

The idea of me keeping a blog is absurd, even for a person prone to absurd ambitions. I don’t return emails or texts. I don’t answer my phone or often check my messages. I am an introvert and a poor communicator. But this imaginary blog continues to lengthen in my head, which I can only describe as a circus- but thankfully more Circe du Soleil than Barnum and Bailey.  And I wonder….is there anyone out there to whom these thoughts, this relentless, droning monologue about who I am and what it means now that my body is captive to Multiple Sclerosis, make sense?

Welcome to my head. It’s marginally more functional than the body to which it is attached.