ONE WOMAN'S JOURNEY
Living life in grace, celebration

As ALS casts a longer shadow over nerves and muscles, Susie Blackmun chooses to bask in the light of family and friends.

Jean Patteson | Sentinel Staff Writer
Posted March 18, 2007


She sits in her wheelchair, a blue-green dragon ornament perched on her shoulder, greeting her guests with hugs.

She will say later this was one of the best days of her life -- the pink and orange tulips on the luncheon tables, the music of the string quartet, the 35 women friends who gathered from near and far to spend time with her.

"It was as wonderful as a wedding without having to bother with the men."

The comment is vintage Susie Blackmun -- forthright, funny, heartfelt.

Just like the notion of attending her own wake.

A year ago, Susie, the youngest daughter of the late U.S. Supreme Court Justice Harry A. Blackmun, was diagnosed with ALS -- amyotrophic lateral sclerosis, or Lou Gehrig's disease. The disorder affects the nerves and muscles, which gradually waste away. The average life expectancy is three to five years from diagnosis. There is no cure.

"A year ago, I got a cane and a walker. Six months ago I got a scooter. Now I've got a hospital bed and a lift," says Susie, 57.

The Orlando woman's response upon learning her diagnosis: She hit the road.

She had traveled far and made many friends during her life as a research psychologist, professional sailor, medical writer, photographer, naturalist, wife and mother. Now she had a lot of visiting to do -- and possibly little time.

So last March, she flew to Antigua, the Caribbean island where she met her husband, William Hay Brown, in 1983. It still is home to many friends from the years she spent as a "yachtie," a crew member on boats sailing in the Caribbean, Mediterranean and South China Sea.

She visited lifelong friends in her hometown of Rochester, Minn., in July. On a side trip to northern Wisconsin, she triumphantly completed a five-mile kayaking excursion despite her "wonky" legs.

In September, she traveled to Washington, D.C., to attend a memorial service for her mother, Dottie Blackmun, whose ashes were buried with her husband in Arlington National Cemetery. She revisited the city for a family wedding just last month.

"I started calling these visits my living wakes," says Susie.

Her sister Sally Blackmun picked up on the idea, arranging for friends, neighbors and Susie herself to celebrate her life at Winter Park's Interlachen Country Club on March 3.

There were some surreptitious tears during the event, hastily dabbed away with the corners of white linen napkins. But mostly there was laughter and love.

"I got to hear some of the things that normally are said at funerals," says Susie. "That was the whole point: to see people while I'm still going strong. To go out with a bang."

"I don't feel I'm saying goodbye to everybody," she says. "I'm reconnecting with people, and it's wonderful."

'Through thick and thin'

Susie Blackmun's wheelchair is pulled back from the table so she can better survey her guests. She introduces each with a brief anecdote, starting with neighbors from her west Orlando subdivision.

"We have an incredible neighborhood," she says. "We go back 17 years. We've been through thick and thin together -- teenage trauma, accidents. We've organized our own little Easter parades. We walk our dogs together."

In response, the neighbors speak of Susie's generosity, her sense of adventure, her green thumb, her grace. One says she'll miss their evenings drinking wine together on the patio.

Not to worry, says Susie. "Just pour the chardonnay down the funnel and into my feeding tube."

She singles out friends she met on PTA boards, in carpools, at church and in distant ports of call. She introduces Jane Tietjen, a lifelong friend from Minnesota. "When Jane came over with her booming voice, Dad would get an immediate migraine," she recalls. "Jane's still loud, and politically incorrect, but she's the glue that holds the family together."

Later, Tietjen says she believes Susie's sturdy Minnesota roots make her "a survivor in a devastating situation."

At first, the idea of a living wake "sounded sort of morbid to me," but the event was actually "groovy," she concludes. "And it was fun to see Susie being so happy."

Finally, Susie turns to her daughter, Kaia Blackmun Brown, 19, a student at the University of Central Florida. "This beautiful woman is the love of my life," she says.

And to her sister: "Sally is more mom than sister to me. She always seemed to be the person who loved me most no matter what -- and there were a lot of whats."

Susie was the rebel in the family. It was years before her parents and sisters -- Sally, a lawyer in Orlando, and Nancy Blackmun, a psychoanalyst who lives in Boston -- reconciled to her free-spirited ways.

At the luncheon, one member from the "Minnesota contingent" is missing. A blizzard has grounded the flight of Jaine Nelson, one of Susie's closest friends, but she has e-mailed a tribute to be read aloud.

In it, Nelson offers a toast to her friend: "Know that you are deeply loved and appreciated. . . . Know that I wish I could carry your burden for you. You deserve better."

'Laugh as much as we can'

Susie doesn't feel too burdened. "In some ways, I'm the happiest I've ever been," she says. "Happiness comes from relationships. From rich friendships. Not from accomplishing things. There's satisfaction in that. But true happiness, I think, only comes about through contact with people."

A week has passed since the luncheon/wake. Susie is ensconced in an aqua-colored recliner in a home brilliant with blooming orchids and folk art collected during her worldwide travels. Large windows open onto a sunlit pool deck.

Her positive attitude "is just how I am," she says.

On this afternoon, her financial adviser drops in for a brief consultation, and a young man from the neighborhood comes calling. "Could you do me a huge favor?" he asks. "Could you sew a button on my pants?"

"Oh, for heaven's sake," responds Susie. "We will teach you how to sew a button on."

Her days begin when friend-turned-caretaker Kim Langston brings her coffee and toast in bed. "I read a while. We do the shower routine, which is pretty exhausting. Then I sit in my recliner, which is my office and my computer room and my craft room and everything."

Usually, she is joined by Chloe, her schnauzer, or one of her four cats.

For a woman who has always been active -- sailing, swimming, hiking, rollerblading -- the confinement is galling. "But we laugh as much as we can. Kim and I get into some really twisted situations and it can be pretty funny. The first time we used the hoist -- it's a sling on a portable crane -- Kim pushed me through the house cackling all the way. I felt like a side of beef going to the cooler. Or maybe like a baby being delivered by the stork."

Even the fact there is no cure for ALS "is a kind of relief," she says. "I look at my friends with cancer, and they go through the surgery, the chemo, the radiation. The hopes get up, the hopes fall. They try something new, they feel lousy. It's much easier to just enjoy life and not have to take the roller-coaster ride physically and emotionally."

Strong family support

Susie and her husband had been separated for a year when she learned she had ALS.

"He moved back in so I could stay in the house, and we could keep a home for Kaia. So I didn't have to give my pets away," she says.

They remain together, not as a married couple but as "parents and good friends." After the separation, "the issues and anger are gone," she says. "There are no expectations, and we're really enjoying each other. It speaks to the kind of person he is, that he would turn around and come back."

"He's an incredible chef," she adds. "I lost 30 pounds when he left, and I think I've put it all back on."

Kaia, who is living in a dorm at UCF, comes home frequently. Susie points to a large photo album filled with pictures of her family and pets. "She made me that wonderful book for Christmas. It's the most wonderful present I ever had," she says.

Later, Kaia explains: "I wanted to do something special for her, to show I care deeply. . . . There are those moments when she gets down. She can look at her book and remember the good times. It brings a smile to her face."

Susie's gift to Kaia is also a book, an account of the seven years she spent sailing the seven seas.

Susie says her sister Sally "is channeling her grief into positive things like the party, the living wake." Sally also organized a group of "Susie's Steppers" to participate in the annual Walk to d'Feet ALS walkathon, held in an Orlando park on March 10. The funds raised will be used to buy equipment loaned to ALS patients.

"I do fine as long as Susie's upbeat," says Sally, her eyes shiny with tears.

And most days she is. Although Susie has lost the use of her legs and can barely raise her arms to brush her hair, her sea-blue eyes remain bright, her voice strong.

"I feel like telling people I'm the happiest, healthiest dying person you'll ever meet," she says.

Then, there is a rare catch in her voice.

"If I start thinking about what I'll miss -- weddings, grandchildren, great-nieces and nephews -- it's intolerable. I don't go there," she says.

"You can't spend every day in a pit. I've been in that pit a few times. But it's not nice down there. I'm not staying down there. Plus, if you're all sad and mopey and whiny, nobody will want to be with you. Who will want to come visit?"

Jean Patteson can be reached at 407-420-5158 or jpatteson@orlandosentinel.com.

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