T-shirt memorial

This past Saturday my husband and I participated in a Walk to Defeat ALS at a local park here in Central Florida. The weather was perfect and more than 400 people came together to raise money and awareness for this horrid neuro-muscular disease that continues unabated. No treatment or cure. But it does have a nickname: Lou Gehrig's Disease.

A rainbow of t-shirts glowed in the Florida sun and shouted their message to anyone who looked. Most had a prominent photo of a loved one who had died from ALS or was dying. There is no recovery from this disease. Usually people die within six years of diagnosis.

I walked and pushed Derrol in his wheelchair around the track. He and I feel lucky. He is my poster-child for ALS and he is alive and kicking and fighting for a cure or at least a treatment. Heck, we'd settle for just understanding what causes the disease. So far his face does not reside on any t-shirts.

We saw much love expressed in the t-shirts worn that day by adults, children, even dogs. Messages such as Kevin's Warriors, Adele's Allies, Walter's Warriors, and the poignant "We Walk for Mike."

Most of the people walking on Saturday are gathering money to spend on research. Research that will not help their loved ones. Our situation is a bit different. Not only does Derrol have a rare disease. He has a rare form of it -- the inherited form: Familial Amyotrophic Lateral Sclerosis. That means that our children have a 50-50 chance of inheriting it. Derrol watched his brother stumble, wear braces and die all by the age of 18. More than a dozen other members of the extended family have died of ALS and many more wonder if they will be next. So when we walked around that track the steps were made for brothers, sisters, aunts, uncles, cousins, nieces and nephews as well as for our sons and grandchild.

I will never forget those t-shirts. The art on them tells a bittersweet story of someone loved, but also of someone taken before their time.

One of Kevin's Warriors was his son. He and I and a few others were discussing the research we had heard about -- stem cell studies, new medicines combined to stop the progression look promising. And then I saw the young man's face. He wanted to be positive and supportive and cheer on the researcher's, but the truth was obvious. No matter if the funds raised Saturday brought a cure next week -- Kevin's father would still have spent the last five years of his life struggling against a disease that robbed him of everything except his comprehension of what was happening to him. And then it took his life.

These walks are held in every state. If anyone wants to participate in such a fundraiser -- check the ALS Association website for a chapter near you. Design your own t-shirts. Let your art speak for those who have been silenced like Adele, Kevin, Walter, Derrol's brother Tommy.

Of course t-shirt art isn't confined to ALS -- this kind of art, sadly, reflects almost every disease on the planet. ALS is just the disease that is closest to my heart because it has attacked the man I love. I write about our relationship and hardship in Notre Dame Magazine: Faithfully Departing.

I have met such lovely, warm-hearted, talented fabric artists in the years that I have been writing about quilts and quilters. I've thought of trying to find a way to raise funds to fight this disease within the quilt world. But I'm not much at organizing things, only writing about them. If anyone has suggestions on how to start such a project, or anyone interested in being involved, please let me know. I wonder if there is room in the quilting community for one more worthwhile fundraising cause.

Activist, Artist, dies. His art and contribution lives on

Living through an era, certainly does not make one an expert on it. Only on my tiny little aspect of it. And in the 1960s when Americans protested the war in Vietnam, I lived in a cozy little farming community safe in my child's world. But thankfully there were others committed to keeping our country on the right track.

One of those, an activist and artist, Tom Lewis, stepped up the peaceful demonstrations against the war and was among the "Cantonsville Nine" who introduced the more violent approach to war demonstrations -- attacking Selective Service offices and burning draft cards.

It wasn't many years after Mr. Lewis took his stand that I wished I had the guts to do something like that to save the young men of my community, my fiance, my neighbors, my brother from going off to that senseless war.

Somethings never change, except now we have no Selective Service to silence. But Mr. Lewis continued to protest, right up to his death on April 4, the anniversary of Martin Luther King Jr.'s death.

I can't tell you any better about Tom Lewis and his life than Scott Schaeffer-Duffy has at "Inside the Belly of the Beltway Beast." Also, BaltimoreSun offers another homage to this man's life work.

In the photo above, Mr. Lewis poses next to his award winning art at the Fitchburg Art Museum in 2004. He never stopped standing up for his beliefs and opposing those activities he knew to be wrong. He was among protesters outside of the White House in 2005 and more recently against Darfur at the Sudanese Embassy.

Perhaps more long lasting than even his part in history will be his art. Artists are the world's first activists and fiber artists know how to needle their art to get their voices heard. Tom certainly voices my sentiments about war: "No More War. War Never Again. Peace, it is peace which guides the destinies of people..." Amen. I hope he found his peace.

Eye of the beholder

A group of writers recently discussed the responses they get to their fiction writing. Apparently some readers believe that they can see the author in her work. By looking at the elements brought together, the theme, the character's quirks and hearts they can piece together the mind behind the fiction.

We all had to chuckle a bit about that. We don't often know just where some ideas or character traits comes from when we write them down, let alone trace them to make a psychological profile of the author from it. Same with any artist, I suppose. You see a Monet and think, "That guy has control issues. He creates one dot at a time. Obsessive compulsive? He likes the color blue, what does that mean. Or he uses water lilies a lot is that a Freudian thing with water and women?"

Or van Gogh -- can we see his troubled psyche in his work? We think so because we have pieced together the man's history with his paintings and we perhaps write into his work more than we can actually see? Salvador Dali, what was in his head that caused him to paint with such a unique perspective?

In my own writings of fiction, I pull on my likes and dislikes, experiences, information I've picked up along the way, snapshots of other lives, people I've known, read about, wished for, and what if. Much of my fiction is simply synchronicity. Some I can trace back to certain thoughts or perceptions or even people, but most everything is a collage or assemblage of everything my brain has ever taken in or imagined. What is imagination -- is it simply what we know or is it taking what we know a step further into the unknown?

Well, collage of words for writers, an assemblage of images for collage artists. I look at the exhibit at Bakers Dozen and my writers mind begins to whirl and question. Why bring these together? What is the statement the artist is making? Wouldn't that make an interesting story? And the fabric side of my brain kicks in and I start seeing the collage as fabric art and then I must bring these images to you to view for yourselves. Denise Enslen's image (to the right) certainly speaks of games, chance, gambling, taking a risk, deciding your next move, strategy. Or it could be a grouping of icons when you think of the origins of chess and cards, this speaks of a history and all of the stories that brought those games into being or all of those games played through the ages. Chess and war. Kings and Queens and feudal systems. Monopoly and corporate greed or trying to sell your home in today's real estate chaos. Chips and money and what people have done for money, or what it contributes to the human condition. Did the collage artist think of these things while laying pieces together? Often not. It is the viewer who finds depths even the artist didn't envision.

Assemblage is defined as "a sculptural technique of organizing or composing into a unified whole a group of unrelated and often fragmentary or discarded objects." Like synchronicity unrelated events conspire to come together into something new, revealing, thought-provoking and awe-inspiring.

My friend Carol Melichar, (photo of her work is above left), offers a collage that a fabric artist might easily duplicate. And like readers of fiction, I am wondering what was going on in her mind when she made this. We always want to understand not only the work, but the artist and the process.

We protest that we aren't in our work. We aren't killers if we write mysteries, or psychotic if our characters are crazy. Yet fiction writers look at a creation and search for the creator, too. And much to our chagrin often we see revealed more than we ever suspected. But I think that's a good thing. The things we cannot say or express any other way comes through in our art and binds us together on a higher level of understanding. There is no greater high than finding something new in a poem or piece of art whether it be paper, fabric, oils, sculpture. ... Whatever the medium, even a child's finger painting.

When it speaks we hear angel voices -- or maybe a devil or two, too.