CFS in the news-Brushing it all away

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Tuesday, December 16, 2003

Brushing it all away

http://timesargus.nybor.com/Regional_News/Story/75999.html

December 13, 2003

By SKY BARSCH Staff Writer

The stairs leading up to the Adamant Attic are wooden, a little creaky and

painted bright yellow.

At the top, above the tiny food co-op that serves Adamant - a hamlet in the

town of Calais - is an unheated, three-room community art space. Tuesday

mornings you will find , Janet MacLeod and Jo MacKenzie painting

there to the sound of Vermont Public Radio, when they can tune it in.

The women will tell you to come in and grab a paintbrush and be yourself.

On the left sits of Adamant. She's 85 and paints watercolors with

the freedom of a child.

In the middle sits MacLeod of East Montpelier, who's 58. She uses many oil

colors and textures in her realistic works.

On the right sits MacKenzie, a 48-year-old Adamant woman who uses vivid

watercolors and exact lines to paint familiar and imagined scenes. Yet the

act of painting and these friendships have produced much more: relief and

succor from a disease she has, called chronic fatigue syndrome.

--

The summer of 1989 was to be an exciting time for MacKenzie. Though she had

earned an undergraduate degree in art education, she had packed away her art

supplies while she pursued her master's degree and a career in special

education. After teaching children with special needs in town and

Worcester, she was looking forward to the fall when she would start as a

special educator at Calais Elementary School.

She planned to apply her philosophy of asking her students to do the best

they could, which in her mind meant to try their hardest.

She recalls the morning things changed.

" I woke up and I thought I had the flu. ... It didn't go away. Three days

later, as a family, we realized something was really wrong. The doctor took

a look at me and said, 'You have to go to the hospital.' ... I was doing

very badly, very quickly. "

The doctor diagnosed mononucleosis. " They tested me again and they said,

'Well, if you keep on having what we call chronic mono, and it goes on

longer than six months, then we call it this new category of things called

chronic fatigue syndrome.' "

The vertigo, weakness and shortness of breath continued. " That's when I

entered the new world of this, " she says.

Chronic fatigue syndrome is a serious, often disabling illness characterized

by persistent, unrelenting and severe exhaustion, as well as muscle pain and

cognitive disorders that are sometimes referred to as " brain fog, " according

to the American Medical Association.

MacKenzie, who had been a jogger and tennis player, draws the analogy that

if you compare " tired " to a candle flame, then chronic fatigue is a forest

fire. " Living with it chronically, you no longer have a reference to what

tired is, " she says.

But initially, MacKenzie didn't have a concrete description or understanding

of what she was experiencing. She had heard about the disease as a teenager,

when a relative was diagnosed with a related illness, Epstein-Barr.

" I doubted it, " she says of her diagnosis, remembering thinking she might

have cancer because of the severe and sudden onset of the disease. " In 1989

there wasn't as much information (available). I couldn't believe it. I

couldn't get anything that weird. "

Her family quickly came to her side as they watched an active, energetic

woman Her family quickly came to her side as they watched an active,

energetic woman become debilitated. Relatives from far away moved in with

MacKenzie and her husband, Tom, a musician, to help with laundry,

housecleaning and other tasks. " They really sacrificed, " she says.

--

After a leave of absence from Calais Elementary, she returned to teaching

part time, but with a new perspective on her students.

" I had all the philosophy, and now I had to live it. And it was so different

saying, 'OK, try as hard as you can.' Because I used to say that to kids.

.... Then when this happened to me I said, 'Oh, my God. You have to try as

hard as you can not just today, but you have to do it tomorrow, and you

might, it might feel like this for the rest of your life.'

" And I realized what I had been asking them to do. It's sort of like asking

someone to run a marathon every day - not short sprints - and I thought,

'Wow. Was that a fair thing to ask?' "

She determined that it was.

" The alternative is, let's all sit here and give up. Let's say, 'Well, I

guess I won't learn how to read,' or say, 'Well I don't feel well enough to

teach to you today.' There was no alternative. ... "

" I wasn't asking them to do anything I wasn't asking myself to do. "

--

Four years later, her life changed again.

" I just remember there being art supplies all of a sudden, " MacKenzie says,

though she can't recall who gave her the brushes and paints. She began to

create brilliant, dramatic flowers. They were a stark contrast to the red

barns in brown hayfields she had painted in college, scenes she believes

were " safe " because they would appease those who viewed her work. The second

time around, MacKenzie wasn't needing a safety net.

" (This time) I was painting only for the joy of painting for me. (I'd ask)

'What did I want to paint, what colors did I want to pick,' which is

probably what an artist should have been doing from the beginning. "

MacKenzie painted solely during school vacations and the summer, saving her

energy during the rest of the year for teaching. As the fatigue became more

intense, she left her job at the school in 1999, to take care of her body

and spend time painting.

" I never thought of it as something to supplement my income, " she says.

" When I was painting, actually concentrating on painting, it was the only

time I didn't feel ill. I think for me, painting takes all of my

concentration to do it. Then of course, if I feel fatigue, I have to stop. "

--

Now she strives to paint every day, unless when she picks up the paintbrush,

dizziness and pain come with it.

" I don't paint gloomy things on gloomy days, if I'm not feeling well. It's

always colorful, cheerful stuff. There are days when I can't, but that's

always a lesson. ... When I'm feeling better and I can paint, I can

appreciate it more, because I had been denied doing it the other days. "

Others appreciate her talent as well.

" I do better with goals, and the thought of painting for many years and

putting the paintings in the closet wasn't motivating enough. I wanted to

know ... was I any good? Would anyone want to see them? " She purchased a

book on how to market one's artwork and spoke with the handful of artists

she knew.

Her work has since taken her to shows from Bennington to Jeffersonville.

The paintings are recognizable scenes of her part of Vermont - the dam in

Adamant, the hills of East Montpelier, the trailing Green Mountains. Though

they are familiar, the bright, sparkling colors give the subjects a

uniqueness and flavor. The work has also earned her a spot as the Vermont

representative in the 2004 Vision, Strength and Artistic Expression

(formerly Very Special Arts) show in June in Washington, D.C. MacKenzie

hopes she will feel well enough to travel.

--

In the meantime, she will continue to walk up the yellow stairs to the

Adamant Attic on Tuesday mornings. Her friends and MacLeod help give

her confidence in her work and help her paint freely.

The three met because of MacLeod's vision to turn the attic into a usable

space. Though MacLeod invited many community artists to the space and

several have come, the three women have become the Tuesday morning regulars.

The sessions are quiet while they work. Toward the end of their time

together, they will informally critique each other's work and discuss what

they would like to improve on.

To the women, who seem to laugh as much as they paint, the time together is

social as well as productive.

" (Painting) is the most enjoyable thing I've ever done, " says , a

small woman in a pink coat. " I look forward to getting out. It's very

necessary for me. " She often tells the other two to paint with less control,

to have fun with it.

The company helps MacLeod refine her skills.

" You might have tunnel vision, but then somebody walks by it and looks at it

and it changes your perspective. It's like somebody else's eyes looking at

it gave you different eyes to look at it, " she says.

For MacKenzie, painting is a source of healing. Her Tuesday mornings are for

good company.

" I don't feel ill when I'm working, " she says. " It's almost like you can

take a vacation (from the illness.) I can't explain what it is. "

Contact Sky Barsch at sky.barsch@... or 479-0191, ext. 1153.

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