Remembrance of Things Past

July 10, 2007 at 3:40 pm (Uncategorized)

“The body has its own memory,” Barb, the massage healer I see for my chronic neck and joint pain, told me a couple of weeks ago, as her fingers found the sorest spots in my taut neck muscles. She had just noted that it was exactly a year to the day since I was involved in a rollover car accident that left me with a torn triceps muscle and a bad case of whiplash. Although the injuries have consistently nagged at me for the year, the pain had intensified, for no apparent reason, on the anniversary of the wreck. Barb’s theory was that my body was remembering the year-old trauma and expressing it in its own language of pain. “I know it makes no sense,” she said, “but I’ve seen it time and again.” As always, her hands soothed the pain, and I left her office, if not healed, then at least able to turn my head.

Her words stuck with me, though. The body has its own memory. I wasn’t sure exactly what this meant to me, but it resonated enough for me to scribble the phrase on a sheet of paper on my desk. The body has its own memory.

Barb also was the first person to mention “the second brain,” which is an idea getting attention now, especially with the publication of The Second Brain by Dr. Michael Gershon, the chair of the department of anatomy and cell biology at Columbia University. While it may sound like the stuff of science fiction or outright quackery, apparently the enteric nervous system – the so-called second brain – actually exists. According to the New York Times, “The role of the enteric nervous system is to manage every aspect of digestion, from the esophagus to the stomach, small intestine and colon. The second brain, or the little brain accomplishes all that with the same tools as the big brain, a sophisticated nearly self-contained network of neural circuitry, neurotransmitters and proteins.” Scientists are beginning to see connections between the first brain (the one that sits in your skull) and your second brain (the one which resides in your gut). Depression disorders, Parkinson’s disease, and ulcers, manifest themselves at both brain levels – head and gut. And neurotransmitters like serotonin don’t simply impact your head; they also profoundly influence your digestive system.

Just as with the concept of my body remembering, I found the notion of a second brain in my gut oddly compelling and intriguing. But, again, I wasn’t sure why. I scratched “second brain” and “stomach” on the same sheet of paper as my elliptical note to myself about my body having its own memory. Then, I buried the chicken-scratched paper under the avalanche of papers, DVDs, newspaper clippings, letters to answer, and old New Yorkers that conceal my desk. And I forgot about both ideas.

On Friday, when it was forecast to reach 106 degrees in our mountain town, where few buildings – and not our home, are air-conditioned – I took Andrew and Anna (a delightful eight-year old girl who half-plays with Andrew and half-babysits him) to a local lake to get away from the heat shimmering off the pavement. Once at the lake, I hurried back and forth between the car and the beach, carrying the seventy-five pounds of crap that somehow become requisite gear once you reproduce – you know, the life jacket and the extra life jacket; the bucket of digging toys; the two changes of clothes; the towels; the four different kinds of sunblock (the face stick, the body lotion, the SPF 50 chapstick and the almost-empty bottle of lotion that isn’t enough to cover one small body, but that you somehow never manage to finish, and thus must tote along to every possibly sunny destination); the sun hat and the other hat, in case the sun hat blows away; the books, in case the kids got sick of swimming and digging; the cooler full of enough food to sustain a party of three for a week (and from which the kids still can’t ever find anything quite satisfying enough to snack on at the beach); the hot pink inflatable float; Andrew’s sunglasses that remain on his face for only about 8.3 seconds; the 10 foot wide shade canopy that take fifty minutes to erect and is purely impossible to deconstruct without a movable crane; the collapsible camping chairs, including a small Andrew-sized one that is decorated like an elephant and that he refuses to sit in unless another child expresses interest in it, whereupon you cannot coax his cute little ass from it; and my magazine, just in case I had four or five seconds to take my eyes away from the children.

In between carting all of this by myself and keeping an eye on the kids, who immediately waded out to drowning level in the lake, despite my bellowing, “Andrew! Anna! Wait just three minutes. Please?”, despite all of this, which left me red-faced, sweating, and gasping, I noticed a woman gliding into the parking lot on her elaborate racing bicycle. She was dressed in a tight lycra jersey embossed with her various sponsors and black bike shorts that perfectly displayed her tanned, muscled legs. She whooshed past me, as I stumbled with the cooler, and dismounted from her bike in one, easy motion. When she took off her helmet, I could see its strap lines tanned onto her face.

Merely witnessing this cyclist – this powerful and lovely female athlete – who moved from her bike to the curb to gulp down water before putting the bike back on her car’s roof rack and turning to the rest of her day, after what was undoubtably a long ride on the surrounding roads that are popular with the racing set, just a sideways glance at her, brought Barb’s comment alive. The body has a memory of its own. Yes, it does. One look at her, and it was like my legs and my heart remembered the feeling of speed as the road fell away beneath my bike tires. You see, I used to be a hot shot bike racer too. One look at her, and my torso and neck remembered being strong, slim, and tanned in curious patterns from cycling gear. One look at her, and my hair remembered flying in the wind, my feet remembered the itch of wanting to win a race. One look at her, and my body remembered how it used to be, before years of prednisone, illness, chemotherapy, and stuffing my mouth full of food in a poor attempt to feel better about prednisone and illness. The funny thing was that this realization was entirely physical; I didn’t register the experience of nostalgia and regret with my brain or my emotions until I was back at the picnic table, wrestling Andrew to the sand to lather him in sunscreen. Then I felt like crying, but only after my body had held this knowledge on its own for several minutes.

It made me wonder about my brain – this proud collection of neurons and tissue that claims it rules the roost. There is something almost overweening about my brain, up there, far above the organs it directs. All the emoting and thinking and worrying I do hasn’t really accomplished much. When I first was diagnosed with sarcoidosis, months before sophisticated imaging tests revealed the extent of the disease in my heart and other organs, I felt a slow, steady sinking in my gut. My body knew what was going on; my brain spent weeks pretending the symptoms I was experiencing didn’t exist. While my second brain, housed as it is right next door to my sarcoidosis-riddled liver and just downstairs from my sarcoidosis-riddled heart, lurched with an excess of butterflies and warning signs, my first brain had me telling my gut, “Oh that? That two minute period of bizarre palpitations that almost made you pass out? That was nothing! Nothing! But let’s stay up all night and worry about it anyway.”

There is a wisdom to our bodies and in our bodies that we spend the greater part of our days ignoring. Watching my three-year old son, Andrew, is an exercise in how far we have moved from the knowledge of our second brain, and the knowledge of our skin, our hearts, our kidneys, our eyes, and how far into our grey, shriveled brains we have crawled. Andrew likes the sunshine on his skin. He likes a decent meal and twelve hours of sleep. He eats when he’s hungry, and stops when he’s full (unless, of course, marshmallows or ice cream are involved – then all bets are off).

Andrew inhabits his body, while I, having pumped mine full of various chemicals in an effort to stave off this disease, can no longer recognize the basic cues of hunger, fatigue, and desire. I can’t even tell you when I need to eat something. The prednisone has turned me into the human equivalent of a termite, constantly wanting to gnaw all day, but I don’t need the food I crave. I’m fat; my blood sugar is borderline diabetes levels, and my blood pressure is creeping up. I need no food, yet I am hungry. The food never satisfies, but only makes the termite part of me want to gnaw more. This same type of confusion reigns with my energy level. The sarcoidosis and the various medications the doctors have tossed at my disease like drunkenly-aimed darts, have left me perpetually tired, constantly wanting to lie down, and nevertheless continually berating myself for my fatigue. My body remembers when it knew hunger and tiredness, when it could be sated or rested, and it mourns the passing of this in a language its own. I don’t think my enteric nervous system (or my central nervous system, for that matter) knows up from down anymore. I am left only with the remembrance of things. Seeing a cyclist in a parking lot is my personal madeleine, a trigger leading me back into my physical past.

I’ve been sick lately. My first brain has dedicated its efforts to convincing myself that I’ve just been depressed. “Get going! Lazy! Get writing! Stop feeling sorry for yourself.” But my second brain, my gut instinct, told me that something wasn’t right with my chronic fatigue escalating to the point that simply being out of bed made me feel like my bones were being pulverized. “Get going! You’re in remission! You’re on expensive drugs!” my withered interior head shrieked, but at least I had the sense to ignore it and go to the doctor. My gut instinct proved correct. All of my sarcoidosis markers are back to their worst levels – the doctor’s theory was that my 5 mg. drop in prednisone, combined with too long a gap between my first and second Remicade treatments because of a serious burn, gave the disease time to dig trenches and build up its fortifications. Finally, yesterday, after having a heart episode that left me reeling and feeling like I was about to hit the decks, the doctors opted for a “prednisone surge,” followed by an intense dose of Remicade. The end result is that I am back on 40 mg. of prednisone a day, tied for the highest dose I’ve ever had to take. On Thursday, they will bombard me with double my typical dose of Remicade, and then wait and see what happens. It feels cruelly ironic that my body’s knowledge of its own sickness leads to me being pumped full of more drugs that will in turn confuse those very instincts that preserve me. Welcome to the wonderful world of warfare masquerading as medicine.

A couple of days after my Proustian moment in the lake’s parking lot, my body remembered once again. This time, though, the experience left me teary with happiness instead of grief. Jay and I borrowed Anna’s parents’ kayaks and went camping for the weekend at another, more distant lake. Kayaking is the second athletic love of my life. I spent my youth racing my bike as fast as I could. Riding 100 miles a day was no big deal, and I could sprint around a pace car that exceeded 30 miles and hour. I was long-legged, lean, and wanted to keep up with the wind. Eventually, I started to slow down a little. Kayaking let me to do this, but with integrity. When we spent nearly two years in Palau, a small Pacific island nation located between Guam and the Philippines, Jay and I began kayaking the warm, translucent waters that surrounded us. We built up to a multi-day paddling trip, where we were totally alone – not counting the sharks, rays, sea turtles, giant clams, coral, and the tropical fish we floated with. We would paddle until we were tired, pitch our tents on one of the hundreds of uninhabited islands that comprise most of Palau’s landmass, and watch the stars emerge in total, oceanic night. It was one of the best, most profound experiences of my life. Remembering those days even now gives me strength when the prednisone mood swings strike.

I’ve been reluctant to set foot in a kayak after the wonders of Palau. Lake water is cold; my body no longer feels like its own; I’ve even half-wondered if I would embarrassingly sink a kayak. Plus, I’m not strong anymore. I’m not good anymore. The excuses I’ve constructed for myself are almost as deep as the water I’ve avoided. So for three years, I’ve sat on shore while Jay has taken Andrew on his lap and paddled around various Montana lakes and rivers. This weekend, though, something turned inside me. Maybe it was the woman on the bike. Maybe it was my skin and hair and arms remembering all on their own and demanding they get a say in the matter. Maybe it was my enteric nervous system acting out. Who knows? Whatever it was that propelled me out into the water, with Andrew perched on my lap, was magnificent. I’m not strong; I am lumpy, but I didn’t sink the boat. The paddle sliced through the water and the reflected sunlight. We saw the flash of silver fish below the surface. We glided. The paddle felt like a familiar hand in my own. My arms remembered. My back remembered. And for a moment, it felt like the whole world was singing with me, remembering and looking forward.

4 Comments

  1. Paul said,

    hey Rebecca

    Hang in there – make the most of the moments and look forward to when you will be able to ride 100miles again

    Paul

  2. Nancy said,

    I felt your joy – I am glad you got in that kayak – more of your memories will be there when you are ready – Nan

  3. Lynn said,

    You are the first person that I have heard of that was diagnosed months after having a baby. I thought that I was the only one. Keep your head up and hang in there. We will get through this and soon we will be running around with our children. : ) – Lynn

  4. mandy kealey said,

    Hi Rebecca, it has made me cry to read your thoughts and know someone else suffers from this chronic disease. I feel quite alone and it’s good to know that someone else has the same anxieties and path simular as myself.

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