Wednesday, March 12, 2008

Chronic Spring

Spring was a long time coming this year. Even as the snow melted and the robins came back the days still seemed too short, too dark.

But sooner or later every winter must end, no matter how deep or how dark, and even I can tell that the sunlight is brighter and lasts longer than it did in December. Staying stuck in the dark days of winter would require denial of the tulips rushing out of the ground and the fat, happy buds on the big old Forsythia.

Life is like that. Seasons come and go without care for personal metaphors. The garden dwellers that survived the winter don't spend a moment mourning their neighbors that couldn't make it until spring. Growth just goes on, filling the empty spaces until soon there is only green abandon.

So I'm awake and thankful and going about the business of every day. Still, something is different inside me. I am keenly aware of the brevity of life and the lack of promises we get from the universe. I've been careful not to push too hard or risk too much. Maybe that's been necessary, but maybe it's been a mistake.

This summer I'm going to risk. Big.

I haven't indulged my love of education since I found out just what chronic means. It's too iffy. I might pay my tuition and then never make a single class. Or get halfway through and not be able to finish. And exhaustion inevitably leads to payback. The spirit may be willing but the disease will take its toll.

Today, Spring is strong and I feel the same. I've made a decision to jump off a high bridge into a tank of icy water filled with man-eating sharks. Well -- really I've decided to take a class.

In August an internationally-known quilt artist will be teaching a seminar class for a week, just about an hour from where I live. I love her work. I drool to think of what she could teach me. But it would mean a hefty investment of funds, a week away from home, eight-hour class days plus evenings spent doing "homework". My first assumption was that I could never do it. Never. Nope. Not for me anymore. I'm chronic and helpless and have no options.

And have no patience with that kind of attitude from myself. I really want that class with Rosalie Dace, and I'm going to make it. I've talked to the good Dr. B and to my husband (who probably will qualify for sainthood before this whole thing is over) and to my friends who are going to be in the class. Now, I have something I haven't had for a long time; I have hope and I have a plan.

Friday before the class starts on Monday (this is in August) I am going to let my favorite nurse shoot my backside with a lot of steroids. I don't pitch for the major leagues so it shouldn't be a problem. I'm going to fill a prescription for more steroids and for something that will give me energy -- just for a week. And I'm going to go. Yes, I'll be pumped up like crazy and may not sleep that week. Oh, wait, I forgot -- I'm going to have a week's worth of sleep aids. And my buddies say that a rest period can be worked into the day.

I may fall apart half-way through and have to leave. Well, that's more of the class than I would have had before. And without doubt I will pay dearly in the week or two after my medicated state wears off. I know this is only possible because of the wonders of chemistry. So what. I'm going to do this thing. Yes, the cost is high. But I have the chance to learn from an artist I greatly respect. A chance to spend a week with women whose company I enjoy and who will be sharing the opportunity to grow in our art together. A chance to reach farther than I've reached in so very long.

Mostly, I have a chance to step outside my chronic life and taste life the way it used to be. How could I resist?

Monday, December 17, 2007

Saying Goodbye

Janae Beau White Eagle was an incredible woman. She died just four days short of her 66th birthday. Born on the day Japan attacked Pearl Harbor, Janae slipped out of this life quietly in the hours between one day and the next. No one was there with her. A nurse checked and Janae was there, and when she checked again my friend had gone.

Janae lived long enough to visit with her beautiful daughter and hold her precious grandbaby. Janae loved that baby deeply and dearly, even before he was born. She had time to be initiated into another level of her religion. She lived long enough to welcome death when it came.

Janae was a remarkable woman, self-made in many ways. She was an incredible artist and in recent years had earned her living as a professional quilter. Janae's quilting was incredible. The lucky quilters who have her stitches on top of their quilts own nothing less than a work of art.

At the end, we who loved Janae did our best to surround her with love, even if we couldn't be there all the time. Even though she seemed to be drifting, already halfway out of our world, I know she understood that we were there. I read from her holy book and sang a prayer for her that is important in her faith. We all told her we loved her.

Mostly we held her hand or stroked her hair or just sat beside the window in her room, watching the days grow shorter and darker.

And then she was gone.

Some of us gathered and toasted her memory with hot cider and cookies. Two or three three of us were hard about the work of emptying her house. We fulfilled the wishes of her will as best we could. And still had a house filled with things.

The sorting and boxing and labeling and such began before Janae died. It will be done for good Wednesday when Goodwill comes to take away the remaining boxes and bags. I don't think it will be sad. I have said my goodbyes. It hasn't been easy, spending hours at a time in her house, touching her things, listening for her laughter. But I have talked to her, I have sat in her house and cried until my eyes ached. I think now I can bear to let go of the last of her things.

Janae believed that we are all born over and over until we get it right. And that we share each lifetime with the same people, but in different positions. Maybe next time your husband will be your sister or you will be your aunt's mother. In many conversations, Janae and I came to agree that undoubtedly we had known each other in previous lives. We only shared this life for a year, but it felt like we had been friends forever.

I hope Janae was right. I told her that. During those last days I told her that, with her getting there sooner than me, she has to put the word in with the big Boss. No more of this stuff of finding my friend and then losing her so soon. This has been too hard to bear.

Next time, in the next lifetime that Janae and I get to share, we have to meet sooner.

Thursday, November 22, 2007

Love in a Time of Loss

Right now a woman is lying in a nursing home not far from my home, asleep and unaware.

She is my friend, and she is dying. A few months ago she stopped taking the chemotherapy that was turning her skin into on huge painful blister. It was the fourth round of chemo and was only intended to postpone the inevitable. Four month without more chemo, they said, and that seemed like such a long time. But that was three months ago.

Last week Janae and I planned Thanksgiving dinner. She was bringing yams with pineapple and pecans and marshmallows on top. I told her we'd give her a ride if she didn't want to drive. No problem, she said. It was Wednesday last week, nearly a lifetime ago.

Friday I got a call that she was in the hospital. Saturday morning I opened the door to room 622 on the Oncology Wing expecting to see my Janae sitting up, commanding the nursing staff from her bed. Instead I found her tiny and gray, curled under the blankets, sleeping so deep it seemed she was in another world. When she finally woke, she told me where to find her will. How to call a friend in another city. Who should get her pearl jewelry. She fell back asleep every few words and I had to wake her to finish each sentence.

Is it drugs? I asked the nurse. She shook her head.

You know the head shake. The one that comes with the tight smile and the set facial muscles. You see it all the time on television medical dramas just before the words "I'm afraid the news is bad."

The news is bad. The disease that has eaten her kidneys and swollen her liver so big it has pushed her stomach out of place has found its way into her brain.

Amazing things have a way of happening when life is short. Old friends find their way to the hospital bed. Estranged family members remember the love and fly into town. Good people find time to visit someone they never met for love of a friend. Through it all, flurries of emotion and care-taking erupt and subside all around while Janae sleeps at the eye of the storm.

Everything has been done that can be. All the phone calls have been made. The lost children have been found. We are all watching Janae together now, holding her in our hearts while starting to let go, praying her passing will be easy and peaceful.

Today I will spend Thanksgiving with my husband and sons and a pretty girl named Kait who will find it difficult to make it through dinner without holding my younger son's hand. Janae will not be with us.

Instead she will be three miles away, hard about the business of dying. It isn't easy to watch. Janae's body has more life in it than most. I fear that it won't let go without a hard fight. But in the end, the body will give way. It always does.

Janae's faith instructs that when her soul leaves her body it will be rejoined with the Inner Master and then will find its way into another life, one that will be better for the hard lessons learned while ensouled in Janae. I hope she's right. I hope that her soul's next life will be as part of a large, close, loving family. Maybe my soul's next life can be a next door neighbor.

Sometime tomorrow morning I will drive to the nursing home. I will sit beside the narrow bed by the window in Room 29, holding Janae's hand and telling her stories of Thanksgiving day. I'll bring some bit of stitchery to show her in case she opens her eyes. I'll tell her to hang on a few more hours, long enough for her daughter to arrive with Janae's newborn first grandchild.

I will leave her then to her sleep, to the kindness of Hospice caregivers, to the hard business of cutting the cords that hold her to this life so she can fly to the next.

Sunday, November 11, 2007

Internal Rumors

When I finally felt well enough to wander downstairs to my sewing
room this week, I discovered that while I was sick my sewing machine had
developed a glitch. After two days of trying to resolve the problem I
gave up and toted the thing to the local sewing machine
dealership/repair shop.

The proprietor of the shop is not known for
her people skills. While I explained the problem she stood well inside
my personal space comfort zone, looking straight into my eyes while I
talked. She looked briefly to my machine and when she looked back at me I thought I saw the eyes of my fourth grade teacher Mrs. Humber, who has been the subject
of one or two complete therapy sessions.

'Is your machine threaded now?' she asked, a bit on the shrill
side.Yes, I told her.

'Did you know that the thread isn't in the tension hook?' Still
staring at me, nearly nose to nose.

I told her I knew quite well that the thread was out of the tension hook -- a total lie. But I was channeling my own fourth-grade self and feeling vulnerable.

'Well have you forgotten how to thread your sewing machine?' The question
was so rude and so out of line and her eyes were so unblinking and I
said 'Oh come on' the way people do now.

But I blinked. And she didn't.

In that horrible instant standing there in the gaze of a
woman who owns a small sewing machine dealership in a small town in an
underpopulated state, I was judged and found stupid. We both knew in that instant that maybe, just maybe, I had forgotten how to thread my machine.

I forget a lot of things. It's not the 'now where did I put the keys' sort of thing. My forgetting is a bit more functional. You see, the autoimmune disease that catapulted me into the ranks of the chronic has affected my cognitive abilities. I know this for a fact because in order to qualify for Social Security Disability benefits I had to take a psych test. The man who gave me the test stopped me at one
point when I was desperately trying to remember if the cocker spaniel
dog with the Frisbee in its mouth was sitting with Grandpa earlier or
if it was in the car with Bobby. The doctor patted my hand, handed me
a cup of cold water and suggested I take a break. When I came back
from the break he had put away the testing materials and ushered me to
the door telling me he didn't think I needed to worry, that my
application should go through with no problems.

Now, on one hand, that's what I wanted. On the other hand, I did not
want to be told that I was a card short of a deck. Or maybe two.

Because I have good friends who are chronic, I know that a lot of us face the two-edged sword of being incompetent enough to qualify for disability but being so incompetent that you forget to take your meds. And go to appointments. And to pay bills.

The list goes on, but it becomes more personal and embarrassing.

People who don't know me well enough to know that I have this disease tend to write me off as a bit dotty or maybe even slow. That hurts. If I try to sound intelligent and on top of things, in the same place as everybody else, it just gets worse. I forget words at approximately the same rate as i try to think of them. Pretty disasterous if you're trying for witty repartee.

Learning to live with pain and loss of career and freedom has been hard, but nowhere near as hard as learning to bury my pride and live with the constant little 'slings and arrows' of unspoken insult.

I intend to ask my husband to collect my sewing machine without me. I'm thinking the propriator might be right. Maybe I forgot to push the thread through the tension hook. Or maybe my machine has a real problem. Either way I don't intend to submit myself to the judgmental glare of Mrs. Humber ever again.

And that's one promise to myself I don't think I'll forget.


Wednesday, October 31, 2007

Empty Spaces

I haven't been around in a long spell. Energy has been in short supply and life has been demanding. Next week I'll regale you with stories and even photos of what I've been doing. I meant to do that already, but while I was fiddling my fingers and taking my own sweet time, life jumped up and bonked my chronic head. I have pnuemonia. That's the stuff where you feel like you're drowning only you're standing on dry land. Not fun

So tonight, Halloween, I'm sitting at home in jammies and robe, eagerly awaiting my next breathing treatment. Woo Hoo. Oxygen.

I'm not going to do anything more impressive than writing this blog entry for a few days while I give the high-powered antibiotics time to do their stuff.

Cya next week. Until then, everybody stay well. Wash your hands all the time. Eat green veggies. Sleep as much as you're supposed to. Take your meds.

Cause we who are chronic know that if you do all the things you're supposed to, you won't get sick. Yeah, right. And now I'm going to go watch something vapid on TV and leave you to find your own fairy tales.

Monday, October 15, 2007

This is the Day

Today is Blog Action Day and all us bloggers are writing to encourage environmental action.

Many, maybe most, of us try to live 'greenish' these days. Recycle, share rides, buy green. But I suspect that all our efforts are little more than drops in a very big bucket.

As long as industries spew pollutants into our air, my choice to use pump spray rather an aerosol fabric starch is inconsequential.

As long as farm animals everywhere are being fed loads of antibiotics and growth hormones, shopping at the local farmers market is laudable but hardly meaningful.

We watch little girls (and boys) arrive at puberty at the tender age of 8 or 9 and wonder 'what on earth is causing that?' Universities mount studies. Industry groups mount defenses. The rest of us just get mounted.

I have little faith that we can avert disaster on a planetary scale. (Am I the only person on the planet who actually WATCHED 'Soylent Green'?) But we can try. Success will depend on whether we can grab the attention of corporate interests.

There's only one way to do that: Stop Buying.

No, I'm not kidding. I know you have to eat and your kid needs new sneakers. But think how many purchases you make that you really don't have to. You say Christmas is coming up? I say what better time to whack 'em in the pocketbook than to make a statement that a religious observance of great spiritual depth and solemnity really isn't a great time to fill up our homes with slutty dolls and violent games.

Let's set a starting date and a length of time. If we can make it across the holidays, all the better. And for that period of time, let's see how little we can buy. Eat basics. Wear what you wore last week. Do you really need another DVD? What about the library? I hear that is a big building just filled with books and DVDs and CDs and they let people use those things for free. Try walking to work. Or ride a bus. Your kids drive to school? Park the car for a week or two. They can use the exercise of walking to school.

You see, I really do believe that corporate interests are running our world. I would say for better or for worse, but I can't think of any possible 'better'. We can't vote them out of office. They don't care if we protest in the streets. Honestly, they don't care about anything, the climate included. Global warming? Woo Hoo -- air conditioners will sell like hotcakes!!

What business cares about is money. My money. Your money. If they don't get it, they starve. For one short period of time, let's try starving the beast into awareness. And when we start feeding it again, make sure we get the message across that we want better care taken of our dear Earth.

Who knows -- maybe they'll sit up and pay attention. It's worth a try.

In the meantime, hug a tree, feed a bird, water a flower, give your neighbor a ride. Maybe it'll become a habit.

Peace and Blessings on the Matriarch of us all -- Mother Earth

Saturday, October 13, 2007


When I first realized I had a disease that could destroy my life, and then kill me, I was afraid.

Sleepless nights were spent fretting about what direction my illness would take and whether I would live to be .... whatever. I come from a long line of people who live to be very, very old. I intended to continue that trend for another generation.

After endless doctor visits, tests and consultations the worries waned. My disease became familiar. My condition stabilized mostly. A year went by and then another and although I was in pain all the time, none of my organs were being compromised. Fear slid into a separate compartment of my psyche, more of a dull ache I had to look for than a sharp jab that demanded immediate attention.

The one medical test I never had was an MRI. My insurance doesn't cover it until I've met the annual deductible of approximately $1 million. OK, that's an exaggeration. But the deductible is high enough that I haven't met it in either of the last two years, even with my frequent medical visits.

As a result, nobody has any idea what is going on in my brain. No pun intended. The episodes of vertigo are put off to inner ear inflammation. Cycles of lousy balance -- the same. Or maybe I'm metabolizing meds differently for a while.

But always, in the back of my mind, has been the niggling fear that my growing list of nervous system complaints might be caused by something even worse than what I know I have.

I have a good friend who was told she had lupus and Sjogren's Syndrome years ago and opted never to take treatment. Although she was horribly sick for a period, through the years her worst symptoms eased a bit.

Then a couple months ago her symptoms worsened. She and I shared numb and tingling hands and feet, dizzy spells and weird balance. The symptoms that are eased by my medications went untreated in my friend. She just shrugged it all off.

Until the day she fell down the stairs. Headfirst. Backwards. Reluctantly she started the cycle of testing again. One doctor visit led to another. Last week she got the news: her physician suspects Muscular Sclerosis. An MRI is scheduled to find out for sure. My friend was shaken by the news; her husband is afraid. MS is a nasty disease, one that strikes fear in almost any one's heart.

After all, who in our generation could forget those terrifying television public service ads from the 60s and 70s? Some personality would describe horrid symptoms and then as the screen faded to gray, a solemn voice would intone 'MS, the great crippler of young adults.'

My friend told me she may have MS on the same day my husband brought a newspaper article to me and told me I needed to read it.

'These are your symptoms,' he said. I explained that there is no way to find out whether or not my symptoms are MS without an MRI, and that we just can't afford to pay out of pocket for such a high-end medical test. Those kinds of diagnostics are priced exorbitantly because insurance companies will pay the fees. As a result, people like me who don't have insurance coverage are up a creek with no brain scan.

I know I'm lucky to have the insurance coverage I do. Millions of Americans have no coverage. But I still burn with anger when I think what it will take to manage an MRI, paying in cash. There will be the test, the technician who performs the test, the physician who reads the test and the neurologist who tells me the result. The cost will be in the thousands of dollars. If I have the test.

The good Dr. B says it's not necessary. I'm 90 percent sure he's right. It's that other 10 percent that haunts my mind in the night, and sometimes even in the day. I'm trying not to let it push me around.

Somewhere down the road I think I will have to find out for sure. Because knowing, even the worst, is better than the fear of what might be.

Peace be with you, and may you always be free of fear.