IMAGES OF LOVE

Sequim woman’s photographs helps parents grieve, celebrate

By Michael Dashiell
Staff writer
 
Maybe before, and certainly after. But there’s no crying in the presence of a dying child. Never there, Lynette Johnson says.

“I tell all my photographers it’s not appropriate to break down,” she says.

After sitting in countless hospital rooms with grieving parents, the 53-year-old professional photographer is ready for this heartbreak — most of the time.

Johnson directs Soulumination, a coalition of volunteer photographers helping family members with photographs of their often terminally ill relatives.

Most often the subjects are young children. They are often sick with some rare disease that would be an interesting study in biology if their situations weren’t so painfully tragic, from Tay Sachs and spina bifida to leukemia, brain cancer and other disorders.

For the woman who seems to have a charmed life — she is, after all, the top choice of photographers among well-to-do Seattle families, including Bill and Melinda Gates’ Hawaii wedding and others — the calling to preserve these particular souls seems to be a one she can’t escape. Nor would she want to.

“They want to have their child remembered,” Johnson says of parents she talks through her photo shoots. “Short lives can have every bit as much meaning as longer lives.”

Since starting Soulumination five years ago, Johnson shoots at least 50 each year in addition to the traditional wedding and family shoots for her business, but she sees each shoot her volunteers do as well. And since the story of her outreach hit People magazine in 2005, the photographers have no shortage of interest and subjects.

But it’s the children’s stories that draw people in and are, as an understatement, haunting.

There’s Derek, who battled leukemia for six years but died in April 2005 when he was just 8 years old, despite a bone marrow donation from his brother.

And there's little Elise, who was born with the rare Tay-Sachs disease. She can no longer can see or move voluntarily, cannot swallow. Elise suffers from seizures and chronic respiratory illnesses. There is no treatment or cure for Tay-Sachs disease and children born with this condition die between the ages of 2 and 5. Elise is one of more than a dozen Tay-Sachs subjects Johnson has captured on film in recent years.

Francisco, who walked from his homeland in Guatemala to find work and send money home to a struggling family, developed chondrosarcoma — a malignant tumor that starts in the bone — and died in his teens.

And then there are the babies, like Hannah Rose. The younger of two sisters, Hannah Rose was born with a condition known as total anomalous venous return and never saw life beyond four months.

Johnson admits it hits people a little odd to hear what she does. After all, they say, isn’t this a little morbid.

The photographer is ready for this. When strangers begin to understand what she does and why she does it, something changes. Hearts open. Empathy flourishes.

“This culture is archaic with death and grieving; we have pushed it away,” Johnson says from her Seattle home. “(This) is a better way of grieving. No one said doing the right thing is easy.”

If Johnson’s charmed life seems exotic, how much more so is it that she grew up on a farm on the outskirts of small-town Sequim?

“Sometimes I tell people I’m a farm girl from Sequim,” she says with a chuckle.

But it’s true. Johnson grew up as Lynette Huffman on a 90-acre farm up Happy Valley Road apiece, with her parents Neal and Geraldine.

“I never doubted that I would have a nice life ? but I thought I’d have a way more traditional woman's career,” she says.
It took the loss of a family member to change Johnson’s life and, in the corollary of her niece’s death, change the lives of countless others.
 
Small-town girl
finds her calling
Lynette and the Huffmans moved to Sequim when the young girl was just a year old. With her siblings — brothers Phillip and David, and sister Patti  — she made the most of time in the Sequim–Dungeness Valley, getting involved in local 4-H projects and becoming (according to Johnson) the first female Sequim FFA member.

“I still have the jacket,” Johnson says proudly. “I’ll let my daughter touch it but they can’t have it.”

Her father says it was Lynette’s small-town upbringing that gave her a will to work and a heart to give.

“Her life in Sequim, that’s what made her life,” Neal Huffman said. “We made some very strong people.”

Johnson graduated in the top 10 in her class at Sequim High School but she sheepishly admits she never finished that college degree she always wanted to get, even after completing three of four collegiate years.

“In my career as a photographer, it wound up not mattering,” she says.

Instead, the free spirit was drawn to Port Townsend where she opened a florist shop, met her husband, Doug, and had children.

Things changed after she took photos for a friend’s wedding. She recalls her fee for that photo shoot now, and laughs. It was $20 per hour plus fees — exactly $255 per hour less than what she charges now.

“I just jumped right in,” Johnson says.

In the past 20 years, her career spun out of control ? in a good way. She’s shot for more than 500 families, nearly all with no listed phone number or advertising. Word-of-mouth keeps her busy.

“There’s hardly a big name family (in Seattle) I haven’t shot for, but most of them, I treat them like I do everybody else,” Johnson says. “I think people respect that.”

In the midst of this whirlwind, however, came tragedy on a personal level. About 10 years ago, her sister-in-law asked her to photograph Johnson’s niece Lanie, who was stillborn.

“The day that I photographed Lanie, I walked out on the street. I had been sobbing and crying but it came over me that if anyone could do this for somebody, I’d do it,” Johnson recalls.

As fate would have it, one of her regular wedding subjects told Johnson she works at the “palliative care” section of Children’s Hospital. Workers in that rather small unit concentrate on reducing the severity of disease symptoms, often for dying youths.

Johnson told that hospital worker she’d offer her photography services at no charge, as a gift.

And Johnson went to work beyond her normal job, shooting three or four per year. That was until she agreed to a story in People magazine.

“My husband tried to warn me; I am a hot head and he’s calm,” Johnson says.

After the article broke, every local TV station and newspaper was knocking on her door or on the phone. The story made the front of the Seattle Times, and got Johnson an interview on NBC’s “Today Show.” A filmmaker turned her story into “Portraits of Hope” that won the Toronto International Documentary Challenge.

The latest? Pearl Jam touts Soulumination on the band’s “activism” page and sent Johnson a signed poster that her group sold at an artist sale earlier this December.

It’s all a bit much, but the farm girl from Sequim says she’s handling it all right.

“Right now the press is on me, and I’m OK with it,” Johnson admits. “It opens up families who are dealing with loss. I’m nobody (and) I know I’m nobody. It’s so cool that people care.”

Fortunately Johnson has plenty of help. Soulumination has broadened from a predominantly one-person operation into a coalition of volunteers who take assignments when Johnson cannot. This year, Johnson estimates, Soulumination shot about 120 subjects and families; Johnson herself had 67 as of mid-December.

Johnson and Soulumination are not paid for the photographs but gain funding from a few grants and mostly from donations from families.

“People who get it, really get it and are willing to give,” she says.

Johnson thinks back to her niece Lanie and how Soulumination grew — and continues to grow — from that life.

“Now, look at what this child who never took a breath on this earth helped start,” she says.
 
Taking care with each family
The call usually comes not from parents themselves but from social workers in hospitals, doctors, relatives. Perhaps one in 10 cases, the parents call. Shoots have taken Johnson as far as Boston, Edmonton and New York.

“They’re from all walks of life, every race, every religion,” she says.

“(Parents) are so wrapped up in what’s happening to them,” Johnson says, that they almost need to be convinced that pictures would be a lasting memory, not a painful reminder of their dead child. One such couple, Johnson calls, were resistant for quite a while and now have the same pictures hanging on their walls.

They become friends and often become major donors to the program. Inevitably, Johnson gets an e-mail like this one from a parent of young Mercer:

“Your continued work for so many other families is inspiring and beyond touching,” the parent writes. “Your work connects us to our loved ones, but also allows us to share their lives with others in a way that honors their memory and feeds our souls. Those connections create a bond that transcends the moment of when the photograph is taken and in some ways fills the void created by their passing. Thank you does not begin to express our gratitude and feelings for the gift you have given our family.”

Some parents give permission to display their children’s photos on the Soulumination Web site (see box). Their stories often link to other Web sites raising awareness of the disease and opportunities for people to fund medical research.

As Johnson and Soulumination have grown, so has the purpose. Now, families are calling to ask for photographers to help children get pictures of their dying parents.

It seems to be an exhausting but fulfilling pace Johnson keeps, balancing her business and Soulumination. She said she knows it won’t be long before the organization’s movement grows beyond her control. With more shoots to handle, the group’s nonprofit board of directors is likely to look for a second full-time employee and an executive director in coming years.

“Over time, that will have to happen,” Johnson says. “We’ll have to find our way there. I don’t want to let it go yet. It’s not to my full vision. When it is, then I’ll slowly start to let it go.”

She admits that moment may come sooner than later. Photo subjects attach to her quite closely and vice versa.
“The losses are starting to take an emotional toll,” she says.

But just as her photos take on a life of their own, echoing a spirit whose body is gone but soul lives on, she passes on what she can to younger photographers in speaking engagements.

“I followed my passion,” Johnson tells her young listeners. “If you follow your passion, there’s nothing that can’t happen in your lifetime.”

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