Beth Ann Lipskin received a scrapbook from her friend, Marilyn Conn, right, before she was honored at Temple Beit Torah. Rhonda Conn-Parent, left, and Zoey Barron also greeted Lipskin before the service.

A dark diagnosis for a light heart
By CAROL McGRAW
THE GAZETTE
August 12, 2007 - 7:14AM


It’s only seven steps down to the social hall where Temple Beit Torah members are gathered for dessert.

But Beth Ann Lipskin, 54, can’t navigate the stairs any longer and so she sits alone on a bench at the landing as laughter and conversation drift up the staircase.

“I’m like a queen on her throne,” she jokes, as friends stop by to give her hugs and a plate of strawberries. She gamely takes a bite, but chokes — as she does on most solid food.

On this evening she is being honored by the Jewish temple for her many good works, including past leadership of the temple board.

But she is also saying goodbye to almost everything that has given her life definition — friends and her charitable works. She has been diagnosed with amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease, a fatal neuromuscular disease.

At the temple service, she cannot hold the prayer book. A friend, Marilyn Conn, shares hers, and then helps her walk up front to receive the congregation’s accolades.
The Shabbat prayer underlines the moment:

“Like the Sabbath candles, life is kindled, it burns, it glows, it is radiant with warmth and beauty. But soon it fades; its substance is consumed and it is no more.

“Yet we do not despair, for we are more than a memory slowly fading into the darkness. With our lives we give life. Something of us can never die; we move in the eternal cycle of darkness and death, of light and life.”

Lipskin is looking down because her neck muscles are strained. Her voice is slurred and her gait teeters — some strangers who don’t know she has ALS think she is drunk.

She has Conn read her farewell remarks to thank all who have given her rides, brought her food, rescued her during emergencies.
Her fate, she told them, has not dampened her love of Judaism.

She tells them she is going back home to Philadelphia to be near family. “I will reside in a hospice,” she says.
“This makes me so sad I can’t stand it,” Conn said later.

But Lipskin being Lipskin will not let the evening disintegrate into sadness or pity.
“Send me jokes,” she tells one friend.

And she entertains with stories of her slapsticklike tumbles and rescues. Tickled at the memory of her friends picking her up over and over she lets loose with a peal of laughter.

ANTICIPATING THE DIAGNOSIS

Lipskin received the diagnosis last November.
“You have ALS,” the doctor said.
“It’s my birthday,” she replied.
“There is no good day to know this,” he said.
Some patients would then ask: What comes next?

But Lipskin knows. While she was in law school, her mother died of ALS at age 50.

“ALS is relentlessly progressive and profoundly disabling,” explains Dr. Steven P. Ringel, director of the neuromuscular section at University of Colorado Hospital in Denver, which oversees the Muscular Dystrophy Association’s ALS clinic.

Life expectancy averages two to five years. Ten percent of patients live more than 10 years. A rare few live longer, such as famed Cambridge astrophysicist Stephen Hawking, who has had it for more than 44 years.
“For me, it seems to be going very fast,” Lipskin said.

The disease attacks nerve cells and pathways in the brain and spinal cord. When the cells die, voluntary muscle control and movement dies. It affects balance, mobility, speech, swallowing, chewing and eventually breathing, making a ventilator necessary to survive.

Most patients eventually become paralyzed, yet their minds remain sharp.

Lipskin first noticed something was wrong when she could not open jars with her right hand. Then she fell and injured an ankle. Eventually, as other causes were ruled out, she said, “I was anticipating the ALS diagnosis.”

The day before her doctor delivered the bad news, she and volunteer Adelaide Reid spent the day delivering Christmas trees to sponsors of the nonprofit Pikes Peak Hospice and Palliative Care.

Lipskin didn’t say a word about it until dinner, Reid said. “And when she told me, it was just very matter of fact. She has always been hopeful by nature. But given her experience with her mother, she knows the reality. And yet, she asks you about your family and your life, she doesn’t let these days be all about her.”

Ken Field, a longtime friend and former executive director at American Academy of Forensic Sciences where Lipskin worked for more than a decade, met her for dinner shortly after her diagnosis.

“She let out a scream, saying ‘I’ve got ALS!’ And then she said, ‘Where did that noise come from?’ But that was that.

“There has been relief when I realize how well she is dealing with it. Most would be terrified. She is highly intelligent and I think she has thought it through rationally. I can’t think of how she copes otherwise. But I fear if she loses a means of communication it will be horrible for her.”

To ALS patients, including Lipskin, the computer is a lifeline to the outside world. Even when they become paralyzed, many can use voice-recognition technology that allows their spoken words to be printed on the page. But Lipskin said, “I won’t be able to use that. My voice is going.”

She’s unable to use her right hand and types with only her left, but she’s slowly losing use of her left hand, too. She knows some people with ALS can control the computer only by blinking. She shakes her head as if she does not want to think about that.

PAINFUL FAMILY HISTORY

Lipskin says that the hardest part has not been the loss of mobility, slurred speech, the difficulty swallowing, or even knowing that these are the last of her days.
The hardest part was telling her 83-year-old father.
“I dreaded it because he went through it with my mother.”

But he was stoic and calm. Bernard Lipskin of Boca Raton, Fla., recalls how straightforward she was on the phone.

“It was very difficult hearing that,” he said. “I know what she will have to go through because I saw it with her mother.”

Lipskin had graduated from American University and was attending law school at Howard University when her mother became ill with ALS and died 15 months later.

“I remember her muscles would contract painfully all night. And my father would watch over her.”

Each time Lipskin came home from school to visit, she could see the deterioration. “It got so I could not understand what she was saying. We made her a board with the alphabet so she could point out what she wanted to tell us. It was difficult to see her waste away.”

Lipskin was drawn to volunteer at the hospice years later because she remembered how empty she felt after her mother’s death. “At the time I thought, ‘There has to be a better way to go through this for everyone.’”
The longtime hospice volunteer is now in need of a hospice herself.

Joan Selman, director of the nonprofit Pikes Peak Hospice Foundation, said, “It’s like by facing her reality as it is now, she is fulfilling what hospice is all about. She is taking control. It’s all about choices at the end of your life and letting people know what they are.”

“And despite everything she is going through, she is still asking me if there is anything she can do as a volunteer.”

As a girl in suburban Philadelphia, Lipskin loved the Ten Commandments, and the stories from the Talmud read to her by her maternal grandfather, Louis Kasoff. He told her: “You have to be a good person not only for yourself but for everyone.”

Those who know her say that is exactly how she has lived, giving much of her life to civic endeavors.

But being good doesn’t mean she is a milquetoast. “Beth Ann was sometimes a difficult child — she certainly had a mind of her own,” her father said.
Her independence never faded.

Lipskin has traveled to China, Europe, Russia and Japan. She was hoping to make it to Israel and Victoria Falls in Africa. But now she is lucky if she can get out of her apartment for a trip to the grocery store or to one of the many civic boards she serves on.

She worked more than a decade for the Forensic Academy, a professional society dedicated to the application of science and law that includes attorneys, doctors and criminologists.

She came to Colorado Springs in about 1980, when the offices moved here from Washington, D.C. Field, who was director, recalls the first time he took notice of her. He was walking by an office where statisticians were working on comparative factors about criminology labs.

“I heard her say, ‘This is not the way to do it.’ And she solved it. She has a terrific intellect, and could handle a ton of work. When we needed help she always raised her hand and said, ‘I can do that.’” She eventually became executive director.

Lipskin later worked for the Colorado Springs-based Space Foundation, an advocacy group that trains classroom teachers. Her last job was at an insurance service center, but she had to resign when ALS prevented her from talking clearly enough on the phone.

Lipskin carried on with her volunteer work, trying to make light of her obstacles.

Reid recalls picking her up for a volunteer luncheon and finding she couldn’t get into the tall sport utility vehicle. Undaunted, Lipskin suggested trying the cargo area. They reparked the SUV with its back to the curb, used some bags of cat litter as steps, and Lipskin rolled into the luggage area.

“We laughed all the way. Especially when we drove up to the door and people saw her get out of the back,” Reid said. “A lot of people would have been embarrassed, but Beth Ann was so tickled. She was telling everyone about it.”

PIECES OF HER PAST

Lipskin has been teaching the people around her the art of letting go gracefully.

These past weeks, friends have been helping Lipskin sort through her belongings. They ignore the finality by trying on old hats and laughing.

The small apartment is hot and cluttered with things that will go to charity, to family, to friends. A hospital bed is rumpled and filled with paperwork. They place pink sticky notes on things she will take to the hospice in Philadelphia. There aren’t many of them.

One item she will not part with is a tiny replica of a Jewish temple, given to her by her grandfather who escaped Russia during the violent pogroms against Jews. Such replicas were used to symbolize their sanctuaries during the Spanish Inquisition, when Jews had to worship secretly.

She is giving most of her things to charity. Some furniture — including an old lamp that was from her first bedroom when she was a child — will be given to her niece, a college student. “All I need will be a few clothes and high-speed Internet,” she said.

Lipskin shows good humor in the face of the disease. But in an unguarded moment she said, “I don’t like anything about any of this.

“There is a part of me that does not want to think of how bad it will get. I am trying to mentally prepare.”

She’s lost use of her right hand and arm, and noticed that her left hand is also becoming hard to close. “I asked myself, what if my other hand goes, then what?”

Two months ago, she was still going up and down the stairs to her second-floor apartment. As time passed, she had to go down backward to keep her dragging foot from tripping her. Then it became a major project, even with friends lending support.

Picking up the mail meant a treacherous walk down a dozen stairs. She praises the kind mailman who began bringing letters to her door.

“It all takes so much effort,” she said. “I was always spontaneous. Now I have to be organized, plan every little thing, even dressing.”

It is near impossible to get the toothpaste cap off, so she leaves it off. And “have you tried putting a bra on with one hand?” she asked, laughing.

A friend attached her hair dryer to a pole, so she can curl her hair with one hand. Her shower was in a bathtub, and she can no longer get into it.

In the early stages, she was able to drive her stick shift car by using her knees to hold the wheel while she shifted with her left hand. She dreamed of owning a car that had a pushbutton start, because even getting the keys in the ignition was a difficult task.

Instead, she sold the car and relied on friends to take her grocery shopping, to the Laundromat and to her civic board meetings.
Lipskin loves to cook but can’t lift the pans anymore.

Eventually, she could not lift herself out of bed. So she slept in an office chair at her computer, with her head on the desk. When friends learned about it they got her a self-raising hospital bed.

She has fallen many times. A cane is useless because her hands can’t grip it. She couldn’t get a health care helper because her Medicare has not yet kicked in.

She carries a cell phone, and friends came to her aid night and day when she couldn’t get off the floor.

She has always been an avid reader of political biographies, nonfiction and mysteries. But even turning the pages of a book or newspaper is difficult. For now, the computer and TV are easier to manage.
She is overdosing on C-SPAN and shows such as “Law and Order.”
“I’m afraid I will be bored to death,” she said dryly.

FIGHTING THE DISEASE

It’s a Tuesday evening and Lipskin is attending her first ALS support meeting in Colorado Springs, sponsored by Muscular Dystrophy Association of Southern Colorado.

In the parking lot her slacks are threatening to fall down because she was unable to button the top.

“That would be a grand entrance,” she said as an acquaintance helped her.

Nearly a dozen people are there to hear a guest speaker from a computer company. He’s developed software that will do everything from turn on radios to turn off house lights. It costs thousands of dollars.

Afterward, the ALS patients talk about football, grandchildren, gardening — everything but ALS.

Lipskin becomes impatient because she has come to get practical advice.

Finally she asks about the difficulty in traveling by plane. A discussion about airport wheelchairs ensues.
But most in attendance said they don’t travel much anymore.

Deb Kinnan, a counselor who leads the group, says later that the monthly meetings don’t mirror traditional support groups. Health issues limit attendance, and as the disease progresses patients can no longer attend at all.
ALS patients must be advocates for themselves, she says.

“There are problems with everything — insurance, health care, home help. It’s exhausting, frustrating, and they struggle.”

She adds that the stress on families is great, especially if they are the main caregivers.

“But what has impressed me is the people who don’t focus on what is lost, but what they still have.”

Lipskin’s father is disheartened by the lack of funding for ALS research.

“It’s one of those diseases that pharmaceutical companies don’t find financially beneficial to invest in.”

Lipskin explained. “There is an economy of scale. It doesn’t get the funding that cancer and heart disease get because there aren’t enough patients — they don’t live long enough for companies to make it a big priority.
“And so people suffer.”

Twice each day, Lipskin reaches into a pill bottle — not easy using a hand that won’t close — and takes a small white pill called Rilutek. It costs her $299 a month and prolongs the life of many ALS patients by up to six months. But it doesn’t work for everyone.

An ALS diagnosis does automatically provide Medicare. For Lipskin, it will kick in soon. She has dug deep into her savings for living expenses and medical care in the meantime.

‘I WON’T GO QUIETLY’

Lipskin planned to move to an apartment in Philadelphia in early fall, but the disease has progressed too quickly.

Her sister has arranged for a hospice that takes patients before they are critically ill, and that has a lot of experience with ALS.
“I agree I can no longer live on my own,” Lipskin said.

She seems almost relieved. At the hospice she will get a wheelchair and adaptive devices to help her when she can no longer talk, walk or use a computer on her own.

The hospice is a historic Philadelphia mansion with cozy fireplaces and period furniture.

“I’m a modern-style girl, myself,” she said, rolling her eyes at lace and ruffles. “My first job is to redecorate.”

She laughed. “I plan to continue to be hell on wheels. I won’t go quietly.” She has no idea how much time she has left, but said, “I don’t think I’m scared.” Field knows it will be a big adjustment to have people caring for her. “It’s not her fate that bothers her, it’s the disability. She is so independent.” She says at the hospice she will complete the legal advance directives for her care and death. Lipskin has written her own obituary. “I don’t want to be kept alive if I’m unconscious,” she said. “I don’t want a ventilator. I don’t want a feeding tube.”

The day before she left Colorado Springs, Reid gave her a glass butterfly, a reminder of the hospice memorial celebrations they organized for survivors. They always released live butterflies as a symbol of new life and hope. Lipskin says she is donating her body to ALS research. She wants to be buried next to her mother in the family plot. She does not cling to thoughts of an afterlife. “I don’t have a concept of that,” she said. “I believe that you live the best life you can on Earth.”

POSTSCRIPT FROM PHILADELPHIA

When Lipskin arrived in Philadelphia, she found out her sister had to have surgery for a life-threatening illness. She said the prognosis is good for her sister. Lipskin had to immediately go to the hospice. There, most residents are in critical condition. “I’m not able to have many conversations,” she said. She said some of her friends have called but cannot understand her because of her slurred speech. (It was easier face to face, with lip reading.) Her computer has not yet arrived, so she can’t keep in touch that way.
CONTACT THE WRITER: 636-0371 or carol.mcgraw@gazette.com.

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