Saturday, June 9, 2007

When a Friend Has a Serious Illness

After two young friends were diagnosed with terminal cancer more than a decade ago, I wrote the article below for the LA Times. This was one of the most diffiicult articles that I've ever written because I needed to conduct very focused phone interviews with several seriously ill patients. I kept it together during the interviews, but lost it after I hung up the phone.

I haven't read this article for several years, but I'm happy to say that it holds up from the other side of the fence.

Showing True Friendship in Sickness and in Health; Relationships: If their illness is serious--terminal or not--they'll need your support. Let them know you care and explain how you can help.:[Home Edition]

SUSAN CARRIER. Los Angeles Times (pre-1997 Fulltext). Los Angeles, Calif.:Feb 21, 1996. p. 5
Author(s): SUSAN CARRIER
Document types: Infobox
Section: Life & Style; PART-E; View Desk
Publication title: Los Angeles Times (pre-1997 Fulltext). Los Angeles, Calif.: Feb 21, 1996. pg. 5
Source type: Newspaper
ISSN: 04583035
ProQuest document ID: 16669634
Text Word Count 1536
Document URL: http://proquest.umi.com/pqdweb?did=16669634&Fmt=3&clientId=13497&RQT=309&VName=PQD
Abstract (Document Summary)
When my friend and neighbor Mary Ann, an energetic 41-year-old with two young children, announced that she had cancer in the lower half of her body, I collapsed in a heap on the nearest couch and sobbed. After I pulled myself together, I sensed that I had failed Lesson One of "When a Friend Has a Serious Illness."

I soon learned that my reactions were not unique. Fear of intruding, fear of invading the family's privacy, feelings of helplessness, fear of saying or doing the wrong thing around an ill person or their family are all common responses. Sometimes the fears and feelings of helplessness are so overwhelming that friends and acquaintances take the safe route and do or say nothing at all.

Driving to doctor appointments, watering plants, folding laundry, coordinating meals, providing child care, responding to correspondence or phone calls are all examples of practical help, but, as John Sallot, coordinator of the "buddy office" for AIDS Project Los Angeles, puts it, "Every person who is ill is an individual. It's important to communicate with them." Some people would welcome a friend coming in to scrub toilets; others would consider it an intrusion.
Full Text (1536 words)
(Copyright, The Times Mirror Company; Los Angeles Times 1996 all Rights reserved)
When my friend and neighbor Mary Ann, an energetic 41-year-old with two young children, announced that she had cancer in the lower half of her body, I collapsed in a heap on the nearest couch and sobbed. After I pulled myself together, I sensed that I had failed Lesson One of "When a Friend Has a Serious Illness."

I was unprepared to deal with the emotions her news would unleash. I felt consumed by my feelings of helplessness and fear of saying the wrong thing. I wanted to support Mary Ann and her family, but didn't know how.

I soon learned that my reactions were not unique. Fear of intruding, fear of invading the family's privacy, feelings of helplessness, fear of saying or doing the wrong thing around an ill person or their family are all common responses. Sometimes the fears and feelings of helplessness are so overwhelming that friends and acquaintances take the safe route and do or say nothing at all.

Gail Millan, a registered nurse and an education coordinator for Cedars-Sinai Medical Center, says it is important to put fears aside, to let the ill person know you care and to explain ways you can help.

She identifies three primary forms of assistance: practical help, information related to the illness and general emotional support ("I'm here if you need to talk or if you need a hug").
When approaching a friend or his or her family, the general line, "If you need anything at all, let me know," is comforting and reassuring, but won't elicit a response if the person is reluctant to ask for help.

"Be as concrete as possible. Identify something specific you can do," advises Valerie Ruelas, a social worker supervisor in the HIV/AIDS unit at County-USC Medical Center.

Mary Ann's husband, Mark, agrees. "I really appreciate it when someone tells me to call if we need anything, but I have no idea if they're serious or how much time they have or what they're willing to do. If someone is specific, it opens up a dialogue."

Julie Lichtenberg Stern got down to specifics by organizing a cooking club, a group of five friends who take turns cooking a meal for Mark and Mary Ann's family five nights a week.
"I don't know what we'd do without it," says Mark. "There's no way I could do it {the cooking} right now. I'm working two jobs."

Driving to doctor appointments, watering plants, folding laundry, coordinating meals, providing child care, responding to correspondence or phone calls are all examples of practical help, but, as John Sallot, coordinator of the "buddy office" for AIDS Project Los Angeles, puts it, "Every person who is ill is an individual. It's important to communicate with them." Some people would welcome a friend coming in to scrub toilets; others would consider it an intrusion.

Sometimes emotional support is trickier to supply than practical support, although the two often overlap. In his book "Sometimes My Heart Goes Numb (Love and Caring in the Time of AIDS)" (Jossey-Bass, 1995), Charles Garfield writes that helping with household tasks "carries the elements of devotion: allegiance, dependability, trustworthiness, affection." For many caregivers and friends, going about these tasks lets them communicate that they care without the universal "fear of saying the wrong thing" syndrome.

Ronnie Kaye, a therapist in private practice in Marina del Rey and author of "Spinning Straw Into Gold: Your Emotional Recovery From Breast Cancer" (Lamp Post Press, 1991), describes the syndrome as a panic experience. "When helpers feel they must take away pain, they feel an urgency that borders on panic."

Sallot adds that once volunteers in APLA's buddy program understand that they don't have to solve every problem, answer every challenge or make the pain go away, the panic diminishes.Anger and depression, vulnerability and a keen sense of one's mortality (whether the illness is terminal or not) are typical emotions associated with a life-threatening illness. Kaye says, "Sickness often puts patients in touch with emotions that are terrifying to others. Some people will just run away."

Not running away and becoming comfortable with those emotions is the challenge of caretakers and friends. Mary Spencer, who flew from Seattle to be with our friend Mary Ann a week before her death, said that looking at her friend's exhausted condition was the hardest thing she's ever done.

"Sometimes I just massaged her neck in silence without bothering to chitchat. Other times we had heavy discussions about courage and letting go."

"It's a delicate dance," says Sallot. To be silent or to speak. To rush over and immediately comfort someone when they are dying or to let them cry. To show your own emotions or to bottle them up. Often the friend must rely on intuition.

For those willing to take the risk, the personal involvement can have an enormous impact. Darlene Blanchard, a 35-year old woman with a 1-month-old son, recently learned that she has had the AIDS virus for more than 10 years. Her childhood friend Valerie Lancaster has provided the emotional and practical support she needs to face the illness.

"I'm one of the lucky ones," Blanchard says. "I couldn't get through this without my friends."
(BEGIN TEXT OF INFOBOX / INFOGRAPHIC)

When a Friend Becomes Very Ill
THINGS TO DO
* DO be as specific as possible about how you would like to provide practical or emotional support. If you are unfamiliar with the person's needs, ask. Then make appropriate suggestions.
* DO listen. Randy Herrera, a volunteer with the buddy office at AIDS Project Los Angeles, recommends active listening, which he describes as the art of listening beyond the actual words and understanding their meaning.
* DO respond nonjudgmentally.
* DO provide respect and validation. Let the friend know it's OK to be angry or depressed.
* DO try to find a way to bring joy into the patient's life. At a "Mad Hatter Tea Party" that Michelle Hyland and Sally Viera hosted, guests were asked to wear a hat and bring a hat or scarf for their friend Mary Ann, who had lost her hair during chemotherapy. "She truly loved it. It gave her a chance to feel like a whole person again," says her husband. Simple gestures such as offering the use of a hot tub, renting a video or offering a massage can be welcome comforts.
* DO reach out even if you are not the person's closest friend.
* DO apologize if you've said something insensitive or something innocent that was taken the wrong way.
* DO guide each other along the way. Often knowing what to say and how to react is just as difficult for the patient as it is for the friend. Every person responds differently to the stresses of an illness. Some patients and their families like to be asked continuously for status reports; others consider it tiresome and an intrusion.

THINGS NOT TO DO
* DON'T take things personally. If the friend doesn't feel like talking or seeing you or if the friend seems angry or depressed, it's not necessarily about you.
* DON'T allow the friend to become emotionally abusive. Call him or her on it by saying something like, "I want to be here for you, but I can't do it when you're angry and abusive with me."
* DON'T treat the friend like an invalid.
* DON'T expect the friend or his or her family to make you feel better if you are sad or depressed.
* DON'T pry for details. If they are offered, listen openly.
* DON'T come in with a preconceived notion about what the person should be feeling. Therapist Ronnie Kaye says that if you make up your mind in advance that people should be crying or sharing innermost feelings, you could end up irritating them.
* DON'T put the friend on a time line for emotional recovery. Every person is unique.
* DON'T invalidate a person's feelings. "Anything that invalidates a person's feelings is a crime," Kaye says. Examples include such comments as: "You shouldn't feel that way," "If you're not careful you're going to make yourself really sick," "Don't talk about dying," and, "Everybody has to die some time."
* DON'T trivialize a person's feelings. Comments such as, "It's only temporary; your hair will grow back," to a chemo patient, or, "I get headaches, too," to a friend with a brain tumor belittle painful issues.
AND ABOVE ALL . . .
Never share a story about someone else who has died of the same disease. While this may seem like common sense, almost every patient with a serious illness has a similar story.
"I think it's their way of bonding with me," says Jerry Cozell, 64, who is recovering from colon cancer.

Renate Sperling, 58, who has lung cancer, says she has become "very selective" about who she tells about her disease. When someone tells her about another friend who died, it immediately brings her down, even though she knows that every case is individual.

PHOTO: Darlene Blanchard, left, who has HIV, has support from friend Valerie Lancaster, getting a hug from their neighbor Stephanie Salls.; PHOTOGRAPHER: ROBERT DURELL / Los Angeles Times
Credit: SPECIAL TO THE TIMES

5 comments:

Paula Johnson said...

I am so glad you found that article! I've been wanting to read it since you mentioned it.

Karen said...

Terrific article. Glad you posted it. I'd add to the list of no-no's: never tell a seriously ill person "Everything happens for a reason." I heard that a lot when I was in the ICU ten years ago, and I hated it every tim. I'd think: "So what are you trying to tell me? That there's a reason I'm in the ICU, unable to swallow or walk, while you can walk in and out of my room as easy as pie? And just what might that reason be?" And then I'd feel uncharitable and guilty because I knew the person meant well, and just didn't know what to say. But, still, it drove me nuts every time I heard that phrase!

Anonymous said...

Great article Susan! Thanks for posting it.

Lisa C.

Suzy Keleher said...

Wow! Susan, what a great article and I really liked how you pulled several interviews together. So in that spirit...I have one shoulder to cry on and one to punch. I cried hard with my daughter Kira after you and I talked. Just to think about what difficulties you were going through and what your family was going through with you. I feel honored just to be in your circle but to me...I want to be more available for you, do more for you and with you. Patrick and I can take you places. btw,I want a date for some dim sum. My Mom is going to be out soon from Texas....maybe we could meet you? She loves dim sum...I don't think I have had it unless Asian dumplings at Fridays counts...LOL Oh how i would love a copy of any or all of your articles, Susan. Your writing is so well done, informative and CREATIVE! I care about you and love you and your sweet ones at home. Love, Suze

Piper Robert said...

Great article. You know I've got your back.

Love ya,

Bagpiper Robert : )