Silence of the Am

The funniest thing is that it really happens - when you whisper, everyone in the room begins to tiptoe. They creep along in silence as if...as if there's really something to be quiet about.

It's day four of my acute laryngitis, and it's been mostly entertaining, as I use Colin and my friend Stacy, visiting from Chicago, as my "translators" for phone conversations, and we laugh at the oddities of life around a person who can hear but not speak above a whisper. It's like driving on the left side - everyone feels the need to re-orient. Colin can't help but whisper back - I think it's a sign of empathy - and though with Stacy around there've been three people consistently, we're all beginning to feel how my relatively constant stream of conversation fills the room. The silence is - just weird.

But immensely comforting, to be with people with whom speech isn't necessary every minute. We were upstate when my voice left me and it started to snow, and in front of the fire I lay in silence on one couch with my head in Colin's lap as Stacy typed into her laptop on the other. I can count on one hand the times in my life when I remember feeling so - content. And complete. Actually kind of nice, that my "disorder" keeps me from ruining a perfectly companionable silence by filling it up with unnecessary chatter.

Only yesterday afternoon - day three- did I begin to entertain the notion that there may be something more lasting going on than vocal folds slightly inflamed due to my recent cold. Maybe I really injured them coughing. In twenty years of professional singing, I've never had laryngitis, therefore I'm unsure as to its "normal" track of recovery.

It's strange to imagine a world without my voice. More than part of my identity, more than an extension of my ego, my voice is almost another person with whom I feel I've always lived. Like my "deamon" (a la The Golden Compass.)

Already yesterday I heard the outgoing message on our answering machine and thought, she sounds so far away. Who is that girl? What if I lost my voice, or I regained it and it wasn't...pretty to listen to? Imagining such a world requires reorganizing the pieces of my soul. It's not entirely a bad thing, ...just...completely different.

Maybe being sans voice would help focus my now scattered energies. Funny how over the past few days I've become more diligent about practicing my harp. And I'm more interested in that dance class I've been studiously not attending for ten years. Perhaps it doesn't matter what my mode of expression is. I just need one.

Maybe without my voice I would finally get that job with Doctors Without Borders and do something important in the world. Maybe focus my energies on healing. Maybe many things would be different.

Anyway, I'm settling in. We've pulled out the sign language dictionary, and changed the outgoing message on my cell phone so it instructs people to leave an email address, FAX, or some way to reach them which does not involve my speaking. I'm wondering how I'm going to change that plane reservation for which I need to speak to a person. How much can I depend on others to be my voice, and for how long? How much does one of those TDD devices cost?

Colin thinks maybe I cursed myself by taking the picture above. We were in a special place in Glacier Mountain National Park called The Trail of the Cedars, where gigantic trees have grown without being molested by fire, some for over a thousand years.

The Cedar forest feels holy. Footsteps fall almost silently on the ground softened by pine needles over eons. Like when you walk into a church, all but the most insensitive immediately lower their voices. And look up. To where a canopy of ancient trees instructs your soul upwards, to your third eye and then the Baihui, the point in Chinese Medicine which translates as The Point of a "Hundred Meetings."

There's a reason monks take a vow of silence in order to hear the subtleties of the energies around and within. I can see why. Losing a voice is like losing one of your senses - all the others immediately become heightened. In the sanctity of the forest I suddenly wanted to feel how soft one of those pine branches was and instinctively put it to my lips. Colin said it looked funny, so I made eyes and he snapped a picture.

I think I can live in this space happily for some time. Hopefully, though, not forever.

Listening to my Rheumatologist

Listening to my Rheumatologist

"Do you think this could be an underlying cause to my Interstitial Cystitis?" I ask, scanning the small room but seeing nothing beyond the little wheels in my head.

She nodded with a knowing smile, almost a smirk. "And all your other inflammatory issues. I see it all the time."

This must be the kind or news a doctor loves to deliver. You have something wrong with you, AND I think I know how to solve it. I'm making a mental list of all the people I need to share this information with. My IC group, my Fibro group, everyone I know with Chronic Fatigue Syndrome. My boyfriend, my friend Keri, who years before earning her medical degree said to me, "I dunno, Niki, but this sounds an awful lot like an auto-immune condition..." my parents, my massage therapist, my gynecologist.

And I think, Thank God I have a Blog.

"This is the medication for you." She writes on a pad. "Plequenil. It's the least harmful of all the medicines I prescribe." She brushes a dark lock of hair away from her temple. "It used to be used to treat malaria."

I giggle.

"What?" says she.

"I've had malaria. And some anti-malarial drugs. This isn't one of the drugs that gives you hallucinations, is it?"

"No," she laughs. "This is much older than those. It was found out quite by accident that it helps with this condition. You will need to have your eyes checked by an opthamologist every six months, though. And it may take two to three months before you feel anything. But you've already waited..."

"Twenty two years," I heard myself murmur. "I've felt like crap for twenty two years."

There was nothing left to say. I've never had fewer questions. This is exactly the disease I've felt like I had, from nearly the beginning. Roving, raging inflammation which seems to travel from one part of the body to another. Slippery. It has seemed to have its own toxic agenda, and has masqueraded as at least a dozen different diseases. All of which I actually have. But this may be "the man behind the man."

This is turning out to be not the appointment I expected. Thinking it would probably be a waste of time, I'd already rescheduled my follow-up with this rheumatologist twice, and almost rescheduled today in favor of a quick trip upstate. A little fresh air'll do me more good than chasing doctors, I thought.

As I waited for the doctor in my little room and pondered on the best laminate square to set my bag down on, I began to feel the usual hackles of fear and certain, impending humiliation rise on my neck. I HATE being left in a waiting room. How many times has that room, in a hundred different offices, in a dozen different cities, resulted in pain, disappointment, and confusion, but worst of all, embarrassment. The doctor pats me on the head and says, "Sometimes we all get a little stressed out..." or laughs openly at the range of diseases I've supposedly come in with, all diagnoses of exclusion. "You can't possibly have all those things. You'd be dead." Well, maybe part of me is.

My chart is sitting in a clear plastic container which hangs from the door. I pull it down and open it.

Pause, please. My Mother is going, What? Read your chart? Isn't that kind of, well, sneaking around?

Absolutely not. When a doctor makes notes about you, those notes belong to you. A common misperception pervades that somehow we are not supposed to ever peek at our notes. But it is completely within your rights to read them. You can request copies of them to be sent to you, you can request copies be sent to another doctor, they are YOURS. Not only that, it behooves one to become acquainted with their contents. I have on more than one occasion found important information lurking about those notes, whose authors neglected or forgot to tell me.

Rewind. Play. I pull it down and open it.

At the top there is a letter to my primary care physician. She thanks my doctor for referring her in the usual manner, (though she didn't, really) next is a summary of my first discussion with Dr. Rackoff. And in the last paragraph: "I think it's very likely that Nicole has autoimmune disease, and am ordering the following tests..."

See, she's not going to tell you you're crazy, I repeated to myself behind the door, She doesn't think you're crazy.

But she probably does. Dr. Rackoff seemed like a no-nonsense kind of doctor last time I saw her. I can't imagine her having patience for any of these "touchy-feely" diseases like Chronic Fatigue Syndrome. Hell, I don't even believe in it.

"The good news is, you don't have Chronic fatigue Syndrome, " she said as she whisked the papers down onto her desk. "And you don't have lupus."

Great, here it comes. I knew it. We've ruled everything out, there's nothing wrong with you, a pleasant handshake, then I'm done. Maybe I can still make a batch of candles and make something productive of my day. I should have gone upstate, really

Dr. Rackoff has more to say. "Let me show you this blood test. There's this protein...in any case, what you do have is significant auto-immune disease. And it causes Inflammation. Non-specific. All over. Inflammation."

That would explain why every time anybody has ever scanned, poked, prodded, filmed, photographed or otherwise investigated my body, they've found inflammation, or the white blood cells which accompany it. But it's like how three blind men describe the elephant; the gynecologist looked at his part, the wrist doc looked at hers, the stomach guy at his, etc., etc. It would also explain why I seem to have weak to middling defenses against any infection.

In fact, looking at the diagnosis, Undifferentiated Connective Tissue Disease, or UCTD, it would seem to explain just about everything.

On my way home I wander around Union Square for a while. In Brooklyn I hit the pharmacy.

"I only have 20 of these I can give you today, the rest will be in tomorrow," the pharmacist shouts over the half-wall. He has a heavy Brooklyn accent, and scarily, he and his staff know me by face. "You want some now, or you wanna wait?"

"I would like to start my new life now, thank you." Not sure if I'm joking, he looks at the other pharmacist. They look down at the piece of paper; together they let out a loud guffaw. It's catching - pretty soon the whole pharmacy has the giggles. The staff will ask them later what it's all about.

I could walk on air. What would I do without this fucking monkey on my back? Make a better living? Focus on my career? Oh, if I have energy I'll have to volunteer, no more excuses about being a sicko, I can take voice lessons instead of get massage, maybe acting lessons, make that demo tape I've been meaning to....maybe physical therapy will work, now that my muscles won't just get irritated from it, and I can join martial arts again and maybe take a dance class. Tonight, why don't I make chili? Colin says he's hungry for Mexican.

Whoa Nellie. You're not cured YET. You my not be able to tolerate the medication. It may not work. The entire diagnosis could be completely false. What if they switched my blood with someone else's? I wander into the very yuppie-shi-shi Union Market, mind looping in the clouds, thinking, I should buy something to celebrate. Everything appears to be enhanced. Every detail is displayed to me in high-definition. Clearly I'm experiencing a mild drug rush. Oxytosin? From my brain? The flowers look gorgeous. Would flowers be overkill?

I'm looking at people in the market, people shopping, people who work there, and for a moment I feel like I'm circulating on their level, like I'm not one step out of synch and behind, like I usually am. In fact I think I can pick out the sick ones as if by radar; it's something in the way they move their eyes, tracking slightly above and beyond like looking at the world full-on would make them dizzy, and suddenly I'm standing in the middle of the market where I usually salivate over all the gourmet food I can only have a little of, and I'm thinking: I don't need this. I don't want anything I haven't got.

I mean, I wouldn't turn down some of those concord grapes right now, but I'm perfectly happy without them. If I have energy, I can want things again. But not these shi-shi yuppie things. Much bigger, much better, more important things I haven't dared to imagine in years. I've always believed you can get just about anything you want in life with hard work and perseverance, but that hard work takes energy. A commodity for me and others with chronic illness. It's been so long I haven't really thought about what I actually want from life. I'm so accustomed to asking, what can I actually, realistically get, and do, with the energy and pain levels I have, that this new life script comes at me like a train wreck. The movie machines are flickering, rewinding and putting in a new reel. I may be a free woman again. Out of prison. Suddenly emancipated. Off death row. Maybe I got lucky.

Colin knows what kind of state I'm in when he walks in the door, because I called him hours ago, my voice shuddering. He takes one look at me and sees I'm practically still on the ceiling.

"Don't get too excited about getting well, 'cuz you'll just make yourself sick," says Colin. He grins and folds me in his arms. Touche´, my friend. Touche´.

Listening to my Uterus

Grampa Gyne pushes at his glasses. I know something must be up, because instead taking the seat at his desk, where he usually sits after examining me and writes prescriptions, he's chosen to sit on the couch opposite me.

"So," he pushes his lenses again, then leans with his elbows on his knees, his expression a grandfatherly mixture of wisdom, professionalism and sympathy, "where are you in your decision- making about child bearing?"

Talking to your body is a little like talking to a computer. Or a small child. Or a horse.

A child or a horse or a computer can't necessarily tell you, in so many words, why it's acting out. Maybe sometimes an animal, machine or child is having temper tantrums because of some obscure inherent condition, or malfunction. But most often I think it has to do with something you're feeding it, doing to it, or putting in its environment. There's something triggering the outburst.

That's why I'm taking time today to Listen to my Uterus. I think it must have something to tell me. In fact my whole body is screaming for attention, and not necessarily in productive ways.

This month in medicine I've been officially diagnosed as hypo-thyroid, seen a physiatrist (neuromuscular specialist) who couldn't believe I can walk after looking at my MRI, and with Grampa gyne, officially opened negotiations about the permanent removal of my uterus. What gives?

I'm regularly amazed at how we Americans are more in tune with the needs of our children, our pets, and our machines than we are to our own bodies. My friends Lynette and Charles have two cats. Says Lynette, "When they eat raw meat, they get the runs; they run around and around and around the couch until they've run it out! It makes them so hyper!"

How often do we personally notice any connection between what we eat and how we feel? Dozens of studies are now at our disposal regarding childrens' diet and their behavior. Do we think this stops when we're adults? We still ride the sugar see-saw - eat it for breakfast, crash mid-morning, eat more for lunch.... The news is full of the latest on diabetes and heart disease in the West. No, as much as we'd like to think so, we're not immune to food.

We're not immune to environment, either. The air we breathe, the noise we're exposed to, the stress we endure.

The problem is it takes attention to ferret out cause and effect. Attention and time and effort - which seems just one more thing "to do" among the kaleidoscope of things we're "supposed" to do every day. And as long as all systems aren't failing catastrophically, we tend to move on.

In the midst of another uterine flare, I've decided I'm tired of battling one infection after another with antibiotics, steroids and other toxic substances, with time between marred by inflammation which feels like a constant migraine in my pelvis.

"I'm concerned about the microbes mutating, getting more tolerant of the antibiotics and stronger against me," I told Grampa Gyne. "And I'm sick of being responsible for educating the bastards. I feel like I've already paid for their college education. I'll be damned if I'm gonna throw in for the masters and doctorate degrees, as well."

I'm ready for a new path.

But all Western medicine has to offer is to cut it out.

So, let's think about this. If your computer had a virus, and you'd been to all the top computer specialists in the world and they couldn't get rid of it, what would you do? (No, you can't buy a new one. This is a metaphor.)

You could smash it to bits (but that would be suicide -always a last option.) You could grit your teeth during its slowness, and keep working it into the ground while it keeps crashing and crashing and crashing.

Maybe you could take some of the load off. Maybe delete some files, run just the software you need. Maybe you figure out that if you just want to do some word processing and get on the internet, your computer works just fine. Maybe you don't need to run the fancy graphics software to get by.

I think that as Americans, we'd rather take a pill than seriously consider any changes to our lifestyle. A shorter workweek, a diet rich in whole foods and low in sugars, an active jaunt three times a week. All beyond consideration for most of us. Our country was built on hard work,and, damnit, we're going to push it to the wall, so we can get things. We will run the fancy graphics software. We will put it on credit. At any cost to ourselves, our bodies, our self esteem, and our relationships.

But wait, I remember this obscure little feature on my computer. It took me a long time to find it. It's called "disk repair," and not everyone knows about it, though it's there for the asking. Apparently it works much like "defragging" on those PC things.

When I run it, sometimes it fixes whatever problem I had. In most cases running it is just considered good computer "hygiene," preventing and correcting problems along the way.

Hundreds of studies support the logic that there are things we can do besides take pills which help "defrag" our own systems. Meditation calms the heart, reduces blood pressure and boosts the immune system. Touching, or being touched by another person releases oxytocin, regulates glucose levels and increases natural killer cells. Yoga reduces muscle spasm and pain. Massage, acupunctue, tai chi...all have well documented positive effects on our body's ability to cope with disease, pain, and the environment.

I learned how to meditate in college. Three times a day I sat and pictured white blood cells, like Pac man, eating up all the bad things in my body. I did Tai Chi and practiced martial arts, then sort of fell off it. I got more concerned with success, personally, professionally.... I felt it wasn't "working." I wanted a cure - one thing I could do which would fix everything. Pronto. As I meditated and practiced Tai chi, my lab results were improving, but not fast enough for me.

In retrospect this is exactly the crazy Western, American attitude which digs a lot of people further into trouble. Why not do the defragging? Why not do the disk repair? Perhaps in listening to my uterus, as opposed to just talking to it, I should hear a wake up call. I must step up and do the daily "fetching of water and carrying of wood" as described by Eastern philosophers.

Toward this end, as you are my witness, I aim to make the following efforts: to quiet the volume of activity I've grown used to in response to my pain, and deepen with it, by being quiet several times a day. If I do nap, to make that time more productive, more potent, by activating my mind around my body's own ability to heal. To make time for yoga, not half a session every other week, but a full session, twice a week. To budget a massage for myself every 10 days.

(BTW, for free yoga you can do at home every day, check out http://www.yogatoday.com/ They post new routines regularly!)

In Chinese medicine, the kidneys hold the energy we have "on credit." The theory goes that once that store is depleted, it needs to be replenished somehow. One needs rest, good food, warmth and a good balance of things, like human interaction and quiet.

Why do I keep going to doctors? Sometimes they do have something useful to say, it's true. But in the silence between appointments I am beginning to hear voices. When I stop talking and barking out orders, I think I hear the voices of my body calling. There is better way, a deeper way, a more productive way, and you've made progress, but you must consider giving up some things. The hardest things, perhaps. Walk with me.

Is my body calling for democracy? Disillusioned with my 30+ reign as sole dictator? Maybe if I put my own CIA to work seeking out microbes which are actually harming me, as opposed to punishing the organs which are only doing their job, I would ultimately win the war. Then again maybe not.

But when you think about it, it's not that hard; the body doesn't really ask that much. Only fundamental change. But in such small portions. Incremental, daily changes, which take so little from our lives, and add so much. A little meditative sitting 15 minutes here, 15 minutes there, cutting up a red pepper instead of eating crackers, adding quinoa to some miso soup, playing the pain meditation CD while napping.

"I haven't decided for sure about child bearing," I told Gramps Gyne," I think I'm probably not going to have children, but I figured I had at least a few more years on the final decision yet." And he agreed with me that we'd try other things.

The NY Consortium

From: "niki naeve
To: "colin young"
Sent: Thursday, October 25, 2007 4:46 PM
Subject: Naeve/Young Consortium (A.K.A. "NYC")

BTW Naked Kandles bought the Naeve/Young consortium some items today: like an oven mitt (to replace similar sullied with wax by proprietress of Naked Kandles months ago), a new cheese grater (to replace similar accidentally melted by same proprietress while preparing beeswax for lip balm), and some paper towel (used to clean up previous).

Niki Naeve, Licensed Massage Therapist also bought us some screws and did some maintenance on Colin's old fondue pot, so she can continue using it for hot rocks.

Love,
Niki Naeve, LMT and Naked Kandles


From: "Colin D Young"
LOL - now if we could just get Colin D. Young Photography to pull his weight!

From: "niki naeve"
yeah, wasn't he supposed to pay for half the printer?


From: "Colin D Young"
I thought I did.

What, the 5 almost full ink tanks weren't good enuf for ya?


From: niki naeve
OK, OK, the Naeve subsidiary relents to let you use the printer, based on the precedent that you have been using the printer already for nine months. But Naked Kandles requests the same squatter's rights for the storage of the new roaster.

From: "niki naeve"
Hi-
Also wanted to let you know I just set up auto payments for the Discover card (the loan for our sewer for the rental house, etc) from our joint acct.
I did use part of the$XXXX loan to bring my personal acct up...

From: "Colin D Young"
Right, so the N/Y Consortium owes the Naeve subcorporation $XXXX (plus interest).

Is there anything else on that card? If not, we can just pay off the card once we get $$$ from M-ARK Project and winter rentals and call it square?

From: "niki naeve"
Then we're just behind for october rent, right? So less than one month.

...

I heard some advice once long ago about choosing someone to marry. "Would you run a business with this person? Because that's what you're doing. When you run a family, you run a business, no two ways about it."

In my youngish, idealistic heart, I thought it reasonable advice, but nothing to mull over very long. Love conquers all, right?

I took business sense for granted. After all, I'd never wanted for much of anything. I must have survival in my genes. Being from a family of stock holders, I picked stocks - profitably, apparently - when I was like 10 . Someone asked me how, once, and I said it was like a game, where you keep track of points. Each dollar is a point. That's how I thought about it.

I never thought about points as equalling food, or rent, or health care. It just wasn't that scarce.

When you're part of a couple it starts innocently enough - usually with food. One of you is short on cash at a cash-only restaurant, and the other puts in. The other rents a movie in exchange. A candy bar at a bodega, a cup of hot cider and a muffin at the farmers' market. And soforth.

Pretty soon pennies owed are forgotten, then dollars...then you move in together, and one of you has the TV and the other one has the DVD player. One of you buys the box springs and the other the mattress, so now who owns the bed?

When money's tight, there are two solutions. You track it with the meticulous mind of an accountant, or you just throw up your hands and say, "what's mine's yours and vice versa, so on and soforth. Let's get on with it." Right. And maybe you never really mean it. Maybe small grudges begin to grow. Pretty soon there are thousands of dollars , cash or debt, or both, floating about in the universe and no one knows who they belong to. Or who covets it.

Colin and I have attempted an attitude which falls slightly in between miserly and hippy-esque. We walk a delicate line. Between the two of us we run six or seven careers, (depending how you count - for instance, is Colin d. Young Lighting and Photography two careers, or one?) three small businesses, four websites, a rental house and a not-for-profit theater company. We both sometimes volunteer, sometimes work for money for local political causes.

Taxes (oh add one career - Colin's my accountant) are a veritable nightmare. On the other hand, there is almost nothing in my life which is not tax deductible. I have hanging files for just about every receipt which touches my hands.

Somehow all these businesses must fit in a one-bedroom apartment, a small office in Manhattan (which is shared with yet another theater company) and the garage of the rental house upstate. My refrigerator at home is now filled to the brim with supplies for Reverie productions' 10th Anniversary "TENtacular" celebration and fundraiser tomorrow. The fridge was not intended to store provisions for 100.

So each business has become - somehow - symbiotic with the others. Colin Young - whether acting as lighting Designer, Photographer, Producer or Draftsman, must not occupy the apartment when Niki Naeve, LMT is working there. Naked Kandles often takes over the kitchen for production. Then it is cleaned and Colin Young, Photographer uses it as his dark room. Then Colin Young, Producer uses Naked Kandles' printer to print some scripts, while Colin Young, photographer burns a disk for Niki Naeve, Singer/Actor, because her computer has no disk writer.

Sometimes we get to use these spaces and things for personal use, as well. Like when we sleep. Or write in blogs.

And now we are nearing the end of the year; the reckoning. At the end of it all, the IRS would like to know exactly in what increments each item or service is bought, used and maintained. And we can write part of it off.

But which parts? Well, let's see, I brought my massage sheets to the laundry today, but it so happened that the shirt I wore for the audition last week was a little smelly, so it want in, too. Do I put the receipt (when they will condescend to give me one) in the massage file, the singer/actor file, or rip it in half?

Come to think of it, I was wearing underwear that day, too. Was that for personal use? Or was it business? And the bra, I wore it the day before when I was making candles, and it's dirty, too. I'm so confused.

We are not the only artists in NYC who maintain several faces in order to make ends meet. Having a small business which can be maintained "on the side" increases one's flexibility so that when "real" work comes you can make a quick turnabout mid-stride, and take it. I meet lots of actors who are computer tecchies, organization consultants or interior designers.

We've taken to calling ourselves "The Naeve/Young Consortium" - or "NYC" for short - and have begun to refer to ourselves in the third person. It's a little scary.

And I think what's most disorienting is the question of where your personal life begins and where your professional one(s) begin(s). One creeps into the other almost innocuously, and then suddenly you can't honestly say whether the light from that lamp is more important as an adjunct to business or pleasure, the book you're reading is education or recreation, and that man you're sleeping with is your business partner or your boyfriend.

And as an artist, who in theory does artistic things for pleasure, where does that fit in? Am I really a business, with all this singing and acting stuff?

Have I made money? Yes. Much? No. And is it work? Does it feel like work? Yes and no, no and yes. The lines are blurred.

When I first moved to New York I was most concerned with proving that I could "play at this level" as a singer/actor. I wanted paying gigs which I could live on, and more or less got what I asked for. Now I'm pretty content that I'm competitive. Of late I'm more interested in developing relationships with quality artists - competent directors and musicians and actors who will call me in to collaborate with them when they have an interesting project, and vice versa. This is a thing which takes time. It's a more organic process than the "splatter" technique I used for just getting jobs in the past. It does require that I nurture other ways to make a living. But I find this place ultimately more rewarding.

So we continue to cross-pollinate our businesses and our pleasures. The cheeses and the salami continue to visit in my refrigerator with the marmalade Coin's Dad makes from his own Seville oranges in Florida, my wax lives in the kitchen and costumes from old Reverie shows grow musty in the basement of the rental house.

It's not the life I would have pictured for myself when I was sixteen, but how could I have? I didn't have any career-minded, professional artists in my family, nor my family's family, or in my circle of neighbors and friends, or in my family's circle of family and friends. Not one. I wouldn't have thought of this life. I stumbled into a dream, and now I find myself looking back through the mottled mirror with less regret, and more pleasure in being one in a community of artists of competence and skill.

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But who can afford to travel?

I admit it. I was the naysayer. I was the one who said, "Nay." "Nay, beloved, we absolutely cannot go to the Canadian Rockies, (nor any Rockies, for that matter) as we have no money, and are both marginally employed. We have debt. We have dentist bills. Here in the city we have not yet paid rent, and upstate there is a sewer hook-up to penny up for, besides. Nay. Nay nay nay nay nay."

"Ah," said my lover, ignoring my goat-like allocution. "What you do not realize is that we are both mostly unemployed. My dear, there is a big difference between mostly unemployed and all unemployed, now isn't there?"

These sound like the words of the Devil if I ever heard them, not the quote from The Princess Bride I know it is. Temping me further into debt. Debt, a four-letter word synonymous with Lucifer in my mid-west upbringing. My grandmother, 100 years old this summer, would not take out a loan if her life depended on it. Especially if her life depended on it.

But I found a list in the bedside table soon after that day, in the drawer on my side we never open. It was a list of all the national parks he'd like to visit, and there are check marks next to the ones he's been to, (all three of them) and pitiful, vacant little squares outlined next to all those he hasn't. I've been raving about the color of the water in the glacier fed lakes and rivers in Banff ever since I visited years ago. I know he would love it, with his photographer's eye and his outdoorsman's heart. And I am drawn back to the mountains like a flower to the sun.

"Let's make a budget," says he. A budget. Just like his always next-thing-to-bankruptcy theater company is always having meetings about. No, thanks. I can do the math in my head. A budget will not give us more money than none! Anything we have "extra" should be going toward debt. Or classes for me, or a new camera for him.

To humor him, mostly, I sit down at the budget meeting.

And next thing you know, (four months later or thereabouts...) we're on a plane. Eight hours by way of Dallas, to Calgary, from New York, albeit, but...on a plane. To the vacation of a lifetime.

You know you're on a vacation of a lifetime when there are lots of Asian people and old people already there when you arrive. They know how they want to spend their precious days on the continent, or left on this earth. They know exactly where they want to be. And that was where we were, at the feet of glaciers, gargantuan things drifting and melting like ice cream between your toes, but between cyclopian, beautiful mountains, embracing you from each and every direction you look. On the American side of the park, those will be gone by the year 2030 or before.

How often have I heard this from my friends? "I would love to travel, but I just don't have the money." I'm here to tell you that with a little determination, it may not be entirely as out of reach as you think. For the record, this is how we did it:

First, we got American Airlines Citibank credit cards. (I accidentally got two. 'Nother story.) At the time the deal was, you get 20K miles after you spend $259 on the card. Colin got himself bumped off planes over Christmas and got some vouchers. Between us, we had more than enough American Airlines "cash" to get us there for free.

So, our expenses were:

Taxis $61 (unavoidable expense with luggage in NYC)
Gas 160.05 (we did drive over 1200 miles - it's pricey in Canada)
Lodging 614.58 (camped 3 nights, stayed with friends 2, then B & B's)
Boat rentals 80 (couldn't pass up a ride on a blue lake...)
Park fees 78.40 (bummed us out a little that it was that much)
Car rental 383.08 (yeah, that was a biggie)
_________________
SUBTOTAL = 1397.91

(I don't count food, because you have to eat anyway, but in the interest of full disclosure we did spend 400 bucks on food.)

Subtract ($470) We sublet our apartment for $500, minus $30 in PayPal fees

TOTAL COST OF TRIP = $927.91
(Split in two = 463.96)

So, for less than 500 bucks a piece, we had ten days of the most fabulous vacation ever!

Our itinerary at a glance:

Day 1) Flew into Calgary, drove down to Glacier Mountain National Park in Montana and spent the night at a hotel in rural Alberta between. (When I called to confirm the reservation, a young woman's voice wailed, "You're from New York and you're staying HERE? That's Hi-LAR-ious!!!"

Days 2,3 &4) Camped in many Glacier Campground three nights, were joined by our friend John.

Days 5 & 6) Stayed with John and his lovely (and newly expectant) wife, MB, in Kalispell, for 2 nights.

Days 7,8 & 9) Then we chugged up to Banff and stayed in various B & B's for three nights,. which ate up most our budget but was worth it for the fireplace at the first, which yes, we needed to take the chill out of the August air.

Day 10) Stayed at a Thriftlodge in Calagry, ready to get our 7am flight. blech!

A lot of my IC friends admit astonishment that I would attempt such a trip. Many of us won't get on a plane, plane and simple (get it?) much less have sex. And 8 hours? Fugettaboutit. The wait on the tarmac, the stress on the pelvic floor muscles caused by sitting, the general sick feeling you can get...but I have a couple weapons.

First and foremost, I got an aisle seat. Second first, I got a massage the day before we left, with emphasis on the low back and pelvis. Second, I make my way quickly to and from the bathroom just as I notice the door closing and fasten seat belt signs illuminating (if it's spasming, a little hand pressure onthe lower abdomen always does the trick for me) , and engage the help of the flight attendants if there appears to be an unforeseen wait (almost always when flying out of La Guardia.)

I say, "I have a bladder disease and will need to use the restroom about every (half hour)? " "?" denotes tone of voice. But it must also be accompanied by certain body language and facial expression. For those who were not raised in the mid-west or are otherwise friendly-challenged, practice this in front of a mirror: Eyebrows upturned, slight smile (but eyes steady...you do not expect to be denied such a reasonable request...) and lastly, the universal gesture of peace, palms upraised. I'm serious, studies have been done on this. Eyebrows raised and palms upturned is the posture least likely to get you killed when making first contact with another culture. Try it.

Then I say, "Can you tell me right before we're about to take off,?" (or help me figure out how to get to the bathroom within my contraints, etc.) This way you've 1) not done anything sneaky, like get up when you're not supposed to (horrors!) which pisses them off (get it?) 2)enlisted their HELP and appealed to their greater sensibility as a good employee and good human being, as opposed to making demands which put one on the defensive.

I have seriously never had a flight attendant deny me after this approach. In fact, they seem eager to help. from what i can gather with my super-human intuitive skills, the most flight attendants want to 1) encourage us to follow the rules and 2) have something easily within their power they can help with. 3) be proud of the job they're doing. 4) know they've helped somebody out, just like that! It's win-win. We folks with Interstitial Cystitis CAN fly!

I sometimes add drugs like Bentyl or Pyridium to this routine, or a motion-sickness drug. And a little stretching in the airport, walking about during the flight , etc. This time I didn't feel I needed the bladder anasthetic, but I did make sure there was a steady stream of Celebrex in my blood for a few days, to control inflammation, bladder and elsewhere, and I used it liberally on my trip. I also took a small amount of muscle relaxant.

ON the trip, we camped near the bathrooms, and I kept a small "chamber pot" (tupperware) in the tent for those really cold nights - it got down to 38F. I have a Thermarest Dreamtime. If you're not a camper, well, what can I say but that it's the shit! It's an inch of blow up mattress, a half inch of foam and a fleece cover on top of that. I knew that no matter how the beds were wherever we stayed, I could sleep on that comfortably without tweaking my back.

When deciding daytime activities, I let my Ego have a discussion with my Self. With full knowledge that my ego does not always do what is best for my Self. I caused my Self to win. Sure, my ego wanted to do that all-day hike 1700 feet up to Grinell Glacier, like I would have before, and it made it worse that the boys were going (C and his friend) . But I found another ranger-led hike going to Grinell lake, which was only 1.5 miles in and mostly level, I had really good, new tennis shoes, and I hiked with the old people and the children and I liked it. I even kept radio contact with C part of the time, so I felt liek I was part of the fun.

Even better, I could walk the next day. And the next.

The trip was spectacular. I could go on and on. Look for links to C's 900 photos in the future - they'll probably go up on his website. I just want to say that what you may think impossible may in fact be within your grasp, with a bit of planning, talking with you Ego and willingness to be flexible. I'm glad C talked me into it with is Barnum-like sales pitch. It was way worth it.

Now there's only the problem of re-entry.

Talking to My Uterus

So, I saw my Grampa Gyne today. My gynecologist for the past couple of years, I call him Grampa Gyne because of his gray hair, crackly voice, sharp eyes, little glasses and most of all his patient, gentle manner. Gramps never rushes me.

I came to Grampa Gyne on the recommendation of a nurse practitioner at Planned Parenthood, where I've found I usually get some of the best care in the land, no matter what state I'm in. This woman sensed she was out of her element quickly, and wrote down his name and number. "He's an immunologist with a specialty in gynecology," she said. "He's just the guy for you."

Framed pictures of his four grown children are yellowing on the walls of his office, and one of them is the spitting image of a dear friend from Christian summer camp I lost touch with years ago. Somehow this put me at ease. Unusual for a doctor, Grampa always asks how my career is going (dismal, I'm afraid) and how my pelvis is feeling (part of the cause of the former).

GG is a short, overweight, stumpy kind of man, turning seventy this year. I still can't get over how it is that after his wife passed away just over a year ago, he always seems to be on a date. Not that i suspect foul play. It's just that - he's Grampa Gyne, you know? Having asked about what performances I was up to these days, he brought one to my last choir concert. She looked to be in her late 40's, long, sleek black hair, intelligent, slim, and confident. All I could think was, god, women must be desperate these days.

For the first months of our relationship I was very positive. GG seemed to know just what was up. A true scientist, he had more ideas than the last 700 stumped docs behind him. Under his care my yeast named "Crusai" was slaughtered, which had for 16 years withstood onslaught from about a thousand doses of monistat, fluconazole and other antifungals. This man may be old-fashioned, but he has a microscope and he knows how to use it, I mused happily.

GG plunged just as methodically into the question of why my pelvis hurts all the time. Yes, we know about the bladder disease. But why does my uterus hurt? And yes, as a team we can distinguish that from the ever-nagging bladder pain. And why all these white blood cells, this inflammation, and my general feeling of malaise? "Even a hang nail can make you feel very lethargic." he explained. "There's a whole cascade of chemicals which respond to any infection, which cause a whole resulting cascade. All your body is interested is in that one little thing."

This man was determined. Together (and he made me feel it was a team effort) we tried things no one had ever tried in almost 20 years of pelvic purgatory. Several courses of antibiotics (some of which took me to the edge of puking daily) and a couple courses of steroids later, (what are you doing? Oh, just shooting steroids up my hoo-ha!) we had our results.

He says I have just as many inflammatory cells as before. And my uterus still hurts, thank you, you can stop poking that, which means the source of the inflammation is probably the uterus or thereabouts. And yes, I've had it biopsied. (The doc who did that PROMISED it was more painful than childbirth.) It was negative.

GG explained this kind of chronic endometritis is usually seen in people who have infections from their IUD's. I've never had an IUD. I've never dared.

But I do have chronic inflammation elsewhere. Why, just last week I had an MRI of my wrist and what did the film say to my doctor? Inflammation. Years ago somebody stuck a camera down my gut and looked around there. Results? Inflammation. Somebody else peeked inside my bladder, once, too. What did they find? Inflammation. Knee? Inflammation. Hip? Inflammation. Throat? inflammation. Vocal folds? Inflammation. Ankle? Inflammation. I think that soon I will blow up like a balloon.

But all of these doctors will insist that these results have absolutely nothing to do with each other, the eldest with the most vehemence. Meanwhile, all the natural medicine people are out there crying "Inflammation! Inflammation! Inflammation is the root of all evil! HARK! The heart disease, the diabetes, the muscle strains! Exorcize it now! Eat as much stinky-burpy fish oil as you can possibly consume! Drink liquid silver! See your acupuncturist! Eat raw veggies! Do it NOW!!!"

GG asked me if I FELT like any of the antibiotics had made me feel better. No. Steroids? Maybe a little. He said we could keep trying those and see if we get any results.

Call me crazy, but isn't that the definition of insanity? Keep trying something and expect different results?

...other than that or a hysterectomy, he's out of ammo.

I keep talking to my uterus: "What did I ever do to you? I never beat you, I never said nasty words, I never had any babies to beat you up, or stretch you or stick you with little fingers and arms and legs to disturb you in any way. And you! Bladder! What is is you got a gripe about, eh? Did I cheat you in poker in another life? Hip, knee, ankle, wrist, shoulder. You! UTERUS! WHAT! tell me! WHAT DO YOU WANT FROM ME?"

Grampa Gyne said maybe it was just feeling ignored.