Thursday, August 27, 2015

I AM GOING SOMEWHERE!

For the past sixteen years, I’ve basically been one of two places: Seattle and Washington DC. That’s to say, at my house or my parents’ house. And that’s it. There’ve been a few exceptions, brief trips to visit friends in Brooklyn or to car camp outside Seattle, once a year at the most, nothing compared to how I once traveled, studied, and worked in foreign countries--but that was before I came down with Lyme.

For me, part of having Lyme is having chemical sensitivity, sometimes called environmental illness. Going anywhere if you have chemical sensitivity can be daunting. Just walking into a building where there’s fresh paint can make you feel sick. Long distance travel can feel like an exercise in self-destruction. At the airport, you will breathe in massive quantities of jet fume. On the plane, you can get trapped sitting next to someone bathed in perfume. If you choose the wrong seat when you buy your ticket, you will inhale even more jet fume while in the air. (So here's the itp of the day. WHERE TO SIT ON AN AIRPLANE IF YOU HAVE CHEMICAL SENSITIVITY: anywhere in front of the wing. Yes, if you sit towards the front you’re more likely to die in the unlikely event of a crash, but if you sit towards the back, behind the engines on the wings, you are guaranteed to inhale quite a lot of exhaust.)

Staying in hotels is also troublesome. It means calling ahead to request they don’t use air fresheners in the room, and also bringing your own sheets in case you’re allergic to the detergent they’ve used on the hotel sheets. And after all that, you still might be allergic to the carpet. Then there’s all that medicine to organize and pack up. And don’t get me started on at eating out at standard restaurants when you’re on the anti-inflammatory diet.

When going to visit friends, this whole princess-and-the-toxic-chemical-special-diets-pea routine is the perfect recipe for being an annoying house guest.

It’s no wonder that on my own momentum I ping-pong back and forth the between two houses I know are healthy for me, my own and my parents’. It’s far easier to stay home, find interesting things to do in the city where I live, and invite people over to my place.

Then this past March I went speed dating. I met a guy who was artistic and creative, and into eating healthy food and avoiding the toxic chemicals. (A man who uses Dr. Brommer’s soap gets a million bonus points from me!) When I first walked into his house I felt a wave of relief and happiness. I wasn’t allergic to anything!

A few months ago, this guy asked me if I wanted to go to Burning Man.

“No, of course not. I can’t go anywhere,” was my brain’s automatic reaction, but I kept that reaction to myself. Because there was also another part of me, the part that was once a journalist, driven by curiosity. That part was someone who once, long ago, could throw a few changes of clothes, a notebook, and a mini-tape recorder in a backpack, and go anywhere. I lived in downtown Buenos Aires and flew to rural regions of Argentina to report on protests along the Bolivian border, I tracked down the historical traces of Che Guevera in Mexico City, and wrote about the homeless squatting in ecological reserves. I tried working on a farm in France, and camped on remote Mexican beaches for vacation. That part of me apparently hadn’t disappeared completely, because I found myself saying, “Burning Man? Maybe. Tell me about it.”

Perhaps I just wanted to dream for a little bit that I could go somewhere radically different again.

Meanwhile, as I’ve been spending more time with the speed-dating guy, I’ve taken the leap and done some travelling with him in small doses. We’ve taken a trip to Kittitas County (apple country) and some trips to a house on Puget Sound, about 90 minutes away, but this was the sort of travel where we packed our own sheets and food, and everything went off without a hitch.

Burning Man is also the kind of travel where you bring your own sheets and food, and tents and other gear for living in the desert. The desert camping part sounded daunting. So I read a few things on the internet about Burning Man. It didn’t seem that I’d be roughing it beyond my capacity. I had a long conversation with my naturopath about it. Her husband has gone to Burning Man, so she had some ideas for me. We strategized about what I could eat and how I could take care of my medicine and supplements in the desert. It seemed possible. Or I should say, it seemed like it might be possible. It seemed worth the gamble.

I'm making stuff to wear at Burning Man.


So I said yes, I’d go to Burning Man. I’ve been doing a lot of planning and packing and ordering special items in the past few weeks. And now Burning Man is just a couple days away. I am a little scared. There will be generators and loud music, lots of flashing lights and people everywhere, plus dust storms and heat--any number of things could go wrong, including sensory overload. I'm as prepared as I can be for that.

But there will also be a temporary Utopia of art, dance, yoga, lectures, acceptance, and (I'm told) everything you can imagine. Plus I can wear the costumes I made for the Seattle Solstice Parade, and all the other glittery clothes I own. (And some that I don't own, thank you, generous friends!)

So mostly, I'm excited. I may love it, I may hate it. I may do both. I might go home early on a bus if it doesn't work out, but I'm planning to explore and have fun annd leave after seven days. We'll see what happens!

Goggles--ready for desert dust storms!


Thursday, August 20, 2015

GOING TO ELEVEN

The backyard, a place for yoga and in general doing things slowly
            A week ago I had a day that didn’t go as planned, thanks to Lyme, but I managed to jot down these thoughts in the evening. So here’s another post, a bit overdue!

  
From Weds August 12:
I pulled myself out of bed this morning feeling far too spaced out—not the regular morning aches, but a floating, almost loopy feeling that I recognized. It’s my brain’s way of disconnecting from how at the bottom of it all, there’s something crummy going on. Although it was a weekday, my boyfriend had spent the night because he was going away in the afternoon, and we’d both been hoping for a bit of connection in the morning. Knowing I wasn’t capable of even a few minutes meaningful of conversation, I encouraged him to get an earlier start on his trip than he’d planned. It didn't make any sense for him to hang around, with the way I was feeling.
Alone, it was a little easier to face the complicated tasks that lay ahead—picking up the dog’s leash, for example, and putting it on the dog; pulling the door key from my pocket, inserting it in the front door and turning, then walking out to the sidewalk with the dog. These things are not hard, but this morning they seemed far too much for my brain and body. It  was as if my surroundings were a giant boulder and I’d woken up as Sisyphus—yes, again, this morning, again. My soul and the world were not one.
            It was a day for doing everything slowly. After I managed by a small godsend to make myself coffee, I opened the story I was working on and wrote at a meandering pace while I ate an apple, setting aside the goals I’d had for getting certain things written. An hour or two passed while I inched along like a sloth, and I dropped my plans of doing errands. It wasn’t that I was tired so much as it felt like my brain was living in one world and my body in another, and how was I to get the two of them together into the car, and after that go shopping?
            I do a kind of mind-body therapy called Self Regulation Therapy (SRT), and my angel of a therapist calls this feeling dissociation. When we reach the point of dissociation, the brain is simply overwhelmed with whatever’s going on in the body, and often vice-versa. Which brings us to the question of why. Why today, in particular, was I feeling what I was feeling? I had some suspicions. My Lyme meds probably needed readjusting, for one. I don’t sleep well if I don’t have enough Lyme medication in my body, and over the weekend I found myself wide awake at 3 a.m. I’d scaled up on one herbal tincture perhaps a little too much in order to get to sleep, so I probably now had an excess of toxins from dead Lyme bacteria in my body, more than I could comfortably handle.
            That might answer the question on the technical level, the Lyme disease level, but these technicalities usually just leave me feeling rotten for a day or two. Why the dissociation? At another level I knew it was my body’s reaction to too much stuff going on--meaning not enough attention to the illness I’m living with.
I tend to be reclusive, spending my days at home where I can write and at the same time hide from all the loud noise and toxic fumes and demanding social interactions of the greater world. At the end of the day, I usually come out of my turtle shell and go for a long walk or swim with a friend, or to dance class. Then I come home and eat insanely healthy food for dinner, followed by a 40 minute medical routine that includes counting out three or four different herbal tinctures drop by drop, mixing up powdered supplements, some in water, some in juice, taking a wide array of pills, making herbal teas that I will drink during the night, and finally giving myself an injection. (Yes, it all seems crazy to me too, and I do it because it works and keeps me off antibiotics.) After all that medical stuff, I'm exhausted, so I go to bed.
But this year (the year I am 42, for all the Douglas Adams fans reading this) the Universe has been throwing me a few loops. The Universe has been coming on strong, messing with my hermit-writer-chronic-illness-management routine. The Universe has been asking me a lot of questions that have only one answer: Yes.
            Would you like to take a week long, all day writing class with one of your favorite authors?
Would you like to date an extremely cute, intelligent, and interesting guy?
            Would you like to get a literary agent?
            Would you like to be one of the lead dancers at the start of the Fremont Solstice Parade? (For non-Seattlites, that’s the city’s big, annual arts parade.)
And make your own dancing girl costume, with feather headdress?
Would you like a visit from one of your dearest friends that same weekend?
            Yes yes yes yes yes.                           
            The Universe threw in a few other socially demanding activities, like changing roommates and hosting a fundraising party for said Solstice Parade—and then just when it seemed things would chill out for the 4th of July, instead I spent the holiday meeting many of the cute guy’s numerous relatives—well, none of it’s been bad. In fact it’s all been pretty wonderful. It’s also quite a lot for a quiet, reclusive, writerly-type.
It’s been as if Nigel (to use another mythic number from pop-culture) has just cranked his custom-made amplifier all the way to eleven and has kept it at eleven for months and months.                                  
            It was almost inevitable that one day I was going to wake up feeling dizzy. Instead of errands, I had to slow things down, and do something that would allow my mind to reconnect with my body. I set my timer for thirty minutes and did yoga at a lingering pace.
Calves-hips-breath-brain.
Brain-breath-torso-toes.
Brain, say hello to Body. Body, say hello to Brain.
Inhale-exhale, bend and straighten, and over again, as slowly as I needed. And then it came, the connection. Everything felt awful. My brain hurt and my body felt like it was made out of gray, murky, unpleasant muck. The dizziness was gone.

So why do it? Why not just stay dissociated? Spaced out and dizzy isn’t so bad, right?
I know from experience that no good will come of it. The spaced-out feeling only gets bigger, until everything seems impossible, including all-important dancing and writing, and the paramount of activities, sleep. And the reconnect, when it does come, feels like Armageddon.
The reconnect today was unpleasant, but only about a four on the scale of unpleasantness. Four, you might ask, out of what? Well, I’m realizing I don’t know. The scale of unpleasantness might go to eleven, or eleventy-one, or one thousand and eleventy-one. But I do know that a four on the unpleasantness scale isn’t so bad. There was still plenty of goodness around, and I was thanking it.
I thanked goodness for the dishwasher—most beautiful invention!—and I thanked goodness for my own particular dishwasher because it needed unloading, a realistic goal at that moment, hard but not impossible. I thanked goodness for having a life that allowed me to go at the slowest pace on days like these, plate by plate and spoon by spoon. I thanked goodness for the dog, who keeps me company when it’s too much to have people around, and soon I thanked goodness again for the dog, who requires me to get up and walk a little bit every few hours, no matter what. I thanked goodness for my house that can sometimes look a little disorganized and shabby, but is always bright with daylight.

I thanked goodness for the backyard, full of things that grow, quiet and green.

And I thanked goodness that I’ve been through days like these enough times to have faith it would get better. So I made my way through the next few hours, until it was time to rest. I lay down on the bed and listened to someone on a podcast read Michael Cunningham’s story, “White Angel,” and I marveled at Cunningham’s beautiful sentences. Before the story could come to its sad ending, I fell asleep—the kind of sleep that overtakes you with indomitable force, the kind of sleep that feels as heavy as iron dragged from earth’s core. I woke out of that deep blackness, realizing oh so gradually that I was myself: I was Noelle.
I was in my own bed. I could feel the bed beneath me. (I think this is called coming to your senses.) I didn’t even have to remind myself to be thankful for the bed. I just was. I felt the thanks and the goodness throughout my body, a feeling of peace and comfort between my body, my brain, and my surroundings. This is why it’s important to slow things down, as hard as it can sometimes be--because there is simply no substitute for it, and because it makes all the difference.



Monday, July 13, 2015

GREAT PODCAST ABOUT LYME. THANKS, DIANE!

Diane Rehm has been great about covering Lyme disease, and getting the full story out there about diagnosis and treatment. In this show she does have a doctor on there who says there's no such thing as Chronic Lyme (makes my blood boil) but she also has a couple doctors on there giving the opposite POV--that is to say, the POV that corresponds to the experience of so many Lyme patients out there!
Let your friends and family know about this podcast.
Also, regarding the Lyme/tick/mouse cycle mentioned on the program, my family has been using Daminix tick tubes to help stop it.http://www.ticktubes.com/index.html