Friday, October 31, 2008

Dreams and Memories--That was Then, This is Now

I have really vivid dreams, especially if I awake early and then go back to sleep, as I did this morning. In the wee hours before dawn, I dreamed a succession of brief scenes in which I performed on a college stage, gave a talk in church and then moved my young family into a residence shared with a rough-looking man and his girlfriend. Strange stories…fodder for fiction…yet, the subject matter was not as revealing about my state of mind as were the feelings with which I awoke from my adventures.

As the new day’s light crept through the blinds at my window, I felt fully relaxed, in a state of utter contentment. In my dreams I had been whole, a healthy, active, non-ill person, going about life with confidence and pleasure. As I continued to awaken, I realized it was all a dream. Yet, it was not just a fantasy. It was real because I really had been like that once, and I could remember the past with fondness. Memories can sometimes stir up feelings of regret or loss, but in this case they only stirred up feelings of confidence and reassurance. I once had a normal life (well, more normal than now anyway) in which I interacted with other people, went out in public and could live anywhere, and I can appreciate what I had, even though things have changed. That was then, and this is now.

Several years before my mother died she had a series of small strokes that left her unable to do many simple tasks, like holding a pair of scissors or mending a torn hem with needle and thread. For years she had loved to do needlepoint, so I was somewhat dismayed when I visited her shortly after the strokes and found that she had several unfinished projects in a bag to be given away. She thought perhaps my mother-in-law Fern would like them. “But Mom,” I asked plaintively, “don’t you think you might be able to do this again eventually?” She calmly replied that she had done needlepoint for many years, and now she would just do something else. Maybe she would read more or just sit and enjoy the company of others. That was then, this was now.

For Christmas the following year, my mother-in-law gave me a beautiful needlepoint pillow. It was one of the projects my mother had started and Fern had finished. Mom is gone now and Fern is no longer able to do any handwork due to a fall. But that pillow sits on the little sofa in my office, a gentle reminder of both their pasts. Like my dreams, it’s a brings back memories of a time when things were different, when bodies were whole. But, as Mom would say, life changes and we have to keep on going with it. That was then, this is now.

Tuesday, October 28, 2008

Celiac Disease--An Anniversary

Ten years ago this month I was officially diagnosed with celiac disease (CD), an autoimmune disease in which ingestion of certain grains (principally wheat, rye and barley) causes damage to the lining (the celia) of the small intestine. The only treatment is a diet with NO traces of the offending grains, usually referred to as a gluten-free (or gf) diet. At the same time, I was also given an official diagnosis of MCS.

MCS and CD are both symptoms of an immune system gone awry. In my case, trying to determine which one came first is like asking the proverbial question of which came first, the chicken or the egg. I may have had symptoms of MCS before those of celiac, but years of undiagnosed celiac caused permanent damage to my adrenal glands, which in turn caused more chemical injury--or did the chemical injury cause some of the adrenal damage and thus aggravate the celiac? These are questions I quit asking long ago, because there were no clear answers, and knowing wouldn't change how things were anyway.

But, suffice it to say, finally getting a diagnosis of celiac disease and multiple chemical sensitivity ten years ago was a big milestone in my life. For one thing, I felt validated. I really was physically ill. I wasn't just making it all up in my head. Now I had medical records to prove that I had been telling the truth all along. I also had a plan for action. By changing my diet and lifestyle I could achieve a better quality of life. And I had justification for warning my family and friends (celiac disease has a genetic component). My story could be a cautionary tale for others.

I still have plenty of health challenges, but looking back I know I am better off now than I was ten years ago. I've backed up a few steps from death's door, and I know what I can and can't eat. But just to make sure I didn't forget how bad things were, I celebrated this anniversary this past weekend with a gluten reaction. Not on purpose, mind you. But somehow some gluten got into my diet by accident, and, well, I will spare you the details, but a gluten reaction is very similar to a severe case of food poisoning (it won't kill you, but you wish it would).

I'm on the mend today--still a little tired, but functioning--and thankful to know the cause. Life is unpredictable with any chronic illness. You never know what a new day will bring. Makes life exciting, doesn't it?

Friday, October 24, 2008

Earth Stewardship

Our world is one big chemical soup, from the pollutants in the air we breathe to the cleanser we use to scrub the bathroom sink, from the plastic in our baby bottles to the shampoo we use to wash out the gray. From birth to old age, we are surrounded by chemicals in our homes, our public places and even on the grass we play in as children. Like straws on the camels back, these chemicals accumulate in our bodies until that proverbial last straw breaks our proverbial backs in the form of immune disorders and chronic illness. For some, like me, the pile becomes too large at an early age and the damage becomes irrevocable.

I can’t reverse the damage that has already occurred to my body, but I can become militant in preventing it from happening to others. Thus my interest in and association with the environmental movement. I believe that God created the earth for our use, but charged us with the responsibility to be wise stewards. If we allow the earth to be poisoned with chemicals, we do so at our own peril. As a chemically injured person, I am a living witness of the consequences of poor stewardship (my own as well as others').

The recent honor given to the LDS Church for its promotion of green building policies in the ambitious City Creek Center in downtown Salt Lake City is evidence that my beliefs are backed up by other people of my own faith. In an article in the Deseret News (June 20, 2008), Bill Williams, director of architecture and engineering for City Creek Reserve Inc., a development arm of the LDS Church, was quoted as saying, “As you look at the tenets of our religion, there is a notion that we must be good stewards in all that we do…It is our hope that this project will be prosperous while standing true to our values of wise stewardship and giving back to the community.”

There are many ways to become involved in earth stewardship, from personal (i.e. using nontoxic cleaning products and reusable grocery bags) to global (supporting international environmental initiatives and pressing for more accountability from big businesses). One person can't do it all; one organization can't do it all; one country can't even do it all. But that doesn't mean we shouldn't try. There are many differing ideas concerning what should be done, but for me personally, my goal is to leave the world a cleaner and healthier place for my posterity.

In future blogs I would like to explore this topic further. What can we do now that will make a difference twenty years from now? Where do we draw the line between fanaticism and practicality? What can be put off and what should have been done yesterday?

Though I have suffered from chemical sensitivity for almost forty years, it has only been in the past ten years that I have become actively involved in earth stewardship, but it wasn’t much of a leap. It was just a logical step for me to take, from protecting my own personal environment to seeking protection for the larger environment of the world.

Thursday, October 23, 2008

I'm Back...Almost

My apologies for not posting very much the past three weeks. I was in Utah for eight days, then home for a few days, then had company for four days, then grandkids for a couple of days, and then company again last night and this morning. That's just way more activity than my old bones (not to mention my immune system) can handle. And on top of all that, I've been fighting a cold.

Respiratory ailments and MCS are just not a good combination. And the visitors we had were all great about not using anything scented, but having extra people in the house always brings in more of the outside world, and that means more MCS symptoms (headaches, fatigue, fibromyalgia). It's a vicious circle, isn't it?

So I'm back to R & I (rest and isolation) to try to recover my wits (what's left of them). And I promise...more favorite R & I activity.

Monday, October 13, 2008

Winter in Montana

The scene outside my office window as I closed the blinds last night was one painted in shades of gray and muted white, the dark trees covered with snow and the distant snowy hills just a white line against the graying sky. But like one of those old hand-tinted black and white photographs, a swath of pale pink colored the sky just above the hills. Quiet and surreal, I felt like I was part of a piece of artwork hanging on the wall in a great gallary, and indeed, I suppose I was.

Driving north from Utah to my home in Montana on Friday, I could see the snow clouds firmly sitting at ground level as I approached the Idaho/Montana border. By the time I came to the little town of Spencer, Idaho, I was engulfed in blowing white. But it was not really sticking to the roadway, and there was hardly another car anywhere to be seen (the other drivers having actually checked the weather forecast before setting out), so I just slowed down (careful not to use my brakes) and continued on my way. The audio book I had rented the week before continued to play (a new Anne Tyler book, Digging to America), and, as stopping really wasn't an option, I just kept going, over Monida pass and on into Montana.

When I pulled over to get gas and a chocolate bar in the little town of Lima, Montana, a fellow pulled in behind me. As we both got out of our vehicles, he called to me, "Hey, that Monida pass was really something, wasn't it?"

"Oh, I've driven it when it was much worse," I replied. "At least today the road wasn't snow packed and icy."

"Well, bless you," he called back.

It is not unusual for someone to follow another's tail lights in a storm. I have done it many times myself when I have been unfamiliar with the way. But this is the second time in the past year that I have had someone follow me through a storm on this same stretch of road.

I feel unsafe in so many places--church, the grocery store, a symphony concert--but I never for a moment felt unsafe driving home through that blizzard on Friday afternoon. I think it is the known vs the unknown, and solitude vs a crowd, that makes the difference. I know that road, having driven it so many times in so many varying conditions, but I never know what I will confront when I walk into church or a supermarket. And I was virtually alone on that road (or thought I was), the master of my own fate so to speak, while in a crowd I am at the mercy of strangers, or even people I know, who pose a threat by their perfumed proximity.

In solitude and the familiar there is peace. It's good to be home.

Thursday, October 2, 2008

Off to Salt Lake...

Well, we're off to Salt Lake City tomorrow for the semi-annual general conference of The Church of Jesus Christ of Latter-day Saints (the Mormons). Attending the actual conference session is problematic, but at least the staff and volunteers at the Conference Center are fragrance-free. I'm usually safe in a corner of one of the public areas, even if I can't stay in the auditorium itself. It's worth being there just for the music--gotta love that Mormon Tabernacle Choir. After the morning session on Sunday, Randl will head back home with friends and I will spend a few days with our middle daughter and husband and son in Provo, Utah. I'll also see my sister while there and an old friend from Washington who will be in the area as well. With the isolation that comes with MCS, it will be nice to make live connections with people who are important in my life.

But before I forget, I just have to pass on a little tidbit of information about the "greatest soap on earth." Well, I think it's the greatest anyway, and I've converted a good friend here too, who splits a wholesale order with me every six months or so. Botanie soap ( is made by a small company in Missoula, Montana, and is available in several natural fragrances as well as no-fragrance-added. It has an olive oil base and just feels yummy on your skin. And it actually cleans, even my four-year-old grandson's grimy fingers after he's been digging in the dirt. Best of all, even Randl likes it, so we don't have to have two separate bars of soap in the shower.

Cheers to all. Have a great fall weekend!