YOUR FELLOW PARTICIPANTS — #9 Robin

We continue our sneak preview of the ten people who will be joining you in the on-the-page support group in The Amateur’s Guide To Death and Dying; Enhancing the End of Life. You’ll have plenty of opportunity to get to know them better once you start the book, but until then, these thumbnail sketches will serve as a handy reference.

Robin, 25, is in recovery and has been for four years. She ran away from home at 16 and lived on the street until she was 19. She was a big-time heroin addict who turned tricks to pay for her habit. “It was a crummy life. I had this total death wish. I shared needles, had unprotected sex, you name it. How or why I survived, I’ll never know. I’ve been raped, beaten, and robbed, each more than once.”

Only after being hospitalized for a severe case of pneumonia and testing positive for HIV did Robin begin to turn her life around. “Is it okay to say that HIV is the best thing that ever happened to me?”

After a year of rehab, she got a job at Safeway and moved into a small flat with her boyfriend Bobby. “We met at an AA meeting. He’s in recovery too.” Her life was finally coming together. “The new HIV drug cocktail I’m on has worked miracles. My viral load went from 700,000 to an undetectable level. I applied to journalism school and am supposed to start in the fall.”

But she’s had to put everything on hold. Bobby wasn’t as lucky. No combination of drugs halted the ravages of AIDS for him. Now 27, he is actively dying. It’s not likely he’ll live out the month.

Despite Bobby’s bad luck, Robin is trying to stay upbeat. “I’ve been through so much to get to this point. I can’t let this setback pull me down again. Bobby would never forgive me.”

She says that watching the man she loves slowly die is the hardest thing she’s ever had to do. “Getting clean and sober was a cakewalk compared to this.” She’s emotionally drained. “It feels like something in me is dying.” Tears well up in her green eyes.

Her moussed platinum hair is scattered wildly on her head. One simple nose ring is all that remains of the dozen or so body piercings she once brandished. A poorly designed tattoo on her upper right forearm peeks out from under her baggy sweatshirt. “I don’t even know how I got this. I was strung out most of the time. Let’s face it, I was a total freak.”

YOUR FELLOW PARTICIPANTS — #8 Raul

We continue our sneak preview of the ten people who will be joining you in the on-the-page support group in The Amateur’s Guide To Death and Dying; Enhancing the End of Life. You’ll have plenty of opportunity to get to know them better once you start the book, but until then, these thumbnail sketches will serve as a handy reference.

Raul, 18, was born with a genetic kidney disorder. He has had countless hospitalizations and surgeries. He has been on dialysis for many years. He had a kidney transplant three years ago, but his body rejected it. Within three months of the transplant he was back on dialysis. “Man, I am so tired of living in a body that never works right.”

Raul is as thin as a reed and his skin has the ashen pallor of one who is near death. His chronic pain has aged him far beyond his years. During his interview, Raul is having difficulty making himself comfortable. “I’m havin’ a bad day. The pain is real bitchin’. It ain’t like there’s some days when there’s no pain, only most of the time it ain’t this bad.”

Raul is exhausted and exasperated. Many family concerns weigh upon him, adding anxiety to his already difficult life. “My parents are heavy into the church. I am too, but not like them. They keep telling me it would be a sin to give up. But hey, man, how can it be a sin to wish this shit would end? It’s not like I haven’t tried. I’ve been in the hospital so many times I can’t even count ‘em.”

Raul’s anger and frustration are written all over him, but his machismo prevents him from revealing too much of his inner struggle. His teeth clench against the pain, but then his eyes brighten for a moment. ”Hey, ya know there’s this real hot babe in my school. She’s so fine. I try to talk to her, but she don’t like talking to me. I think she’s afraid I’ll give her some kind of sickness or something.” Raul has never had a girlfriend. “I never even kissed a girl, ‘cept my sister, and she don’t count. What if I die before I get some lovin’? That would really top off this crummy life.”

Only one of his sisters knows that he wants to do this group. “Amelia is the only one who tells me it’s okay to feel the way I do.” Raul is looking for some support for expressing his feelings. He hopes this group will provide that. “I want to be able to talk about dying with my family, but I don’t know how. We’re all real messed up, I guess.”

YOUR FELLOW PARTICIPANTS — #7 Mia

We continue our sneak preview of the ten people who will be joining you in the on-the-page support group in The Amateur’s Guide To Death and Dying; Enhancing the End of Life. You’ll have plenty of opportunity to get to know them better once you start the book, but until then, these thumbnail sketches will serve as a handy reference.

Mia, 31, is a graduate student in Medieval Languages at Stanford University. Several months ago, she landed in the ICU, near death from an acute lung infection. While she was in the hospital she was diagnosed with a rare lung disorder, which was the source of the initial infection. Since that initial hospitalization, she needs to use oxygen and was advised to seriously consider a lung transplant if she expected to live past 35. Mia reluctantly uses the oxygen, but she won’t consider the transplant. She has chosen a different path.

Mia regularly consults a doctor of traditional Chinese medicine, which is consistent with her cultural heritage. She uses a wide array of other modalities, including vitamins, acupuncture, meditation, yoga, massage, and biofeedback. “This is the way I want it. These things make me feel involved and empowered, and that’s more important than anything else.”

Although she likes her American doctor, western medicine leaves her feeling cold and disconnected. She felt robbed of her dignity in the hospital. “They didn’t see me, they just saw my disease.”

Mia was born in Hong Kong, the only daughter of socially prominent and professionally successful parents. She’s lived a charmed and pampered life, but now she knows the downside of living a life of privilege. “Nothing in life prepared me for this kind of adversity.”

Despite her frailty, she has a decidedly tomboyish appearance. She is lively and animated when she speaks. Sometimes she even gets tangled in the plastic tubing that runs from the ever-present oxygen canister to her face. “I haven’t got the hang of this yet. Can you tell?”

The pulse and spritzing sound of the oxygen keeps time with her labored breathing. “I once felt immortal, which now seems weird because I’m starting to realize I could be quite dead in a year.” She has an overriding dread of her final days. “I can’t even imagine what it will be like. I’m sure it’ll be just horrible. I panic when I have to struggle for a breath now. What will it be like then? I sometimes get so frightened I cry.”

YOUR FELLOW PARTICIPANTS — #6 Kevin

We continue our sneak preview of the ten people who will be joining you in the on-the-page support group in The Amateur’s Guide To Death and Dying; Enhancing the End of Life. You’ll have plenty of opportunity to get to know them better once you start the book, but until then, these thumbnail sketches will serve as a handy reference.

Kevin, 39, is living with HIV. He tested positive twelve years ago. Luckily he continues to be asymptomatic.

Kevin’s a music teacher and member of a jazz quartet. He is currently single and shares his house with two roommates.

His lover, Doug, died five years ago just one month shy of their tenth anniversary together. Kevin is trim and buffed. He works out at a local gym four days a week. He is boyishly handsome with tousled red hair. He rides a motorcycle and is a wicked pool player.

“Even though I’ve had many friends die of AIDS, I still have plenty of my own death stuff to deal with.”

He reports that he has recently engaged in some questionable sexual practices. “That’s a sure sign that I’m shoving a lot of this under the carpet. And I know this kind of thing could be, well, a fatal mistake!”

Kevin was born and raised a devout Roman Catholic. His Boston Irish family had high hopes that one day he would become a priest. “I know I disappointed them and I don’t think they ever really got over it. Ya see, when I came out in college I left the church at the same time. It was a preemptive strike, if you want to know the truth. I wasn’t about to wait around for them to throw me out just because I was gay.” His inability to find a suitable spiritual home makes him sad. “Sometimes I feel lost and rudderless. I know God loves me, but the sweet and easy connection I once had with God as a younger man eludes me now.”

Kevin believes it’s important to ritualize the end of life, but doesn’t quite know how to make that happen. “Maybe I’ll get some ideas from the other people in the group.”

YOUR FELLOW PARTICIPANTS — #5 Clare

We continue our sneak preview of the ten people who will be joining you in the on-the-page support group in The Amateur’s Guide To Death and Dying; Enhancing the End of Life. You’ll have plenty of opportunity to get to know them better once you start the book, but until then, these thumbnail sketches will serve as a handy reference.

Clare, 73, and her husband, Charley, have been married for fifty-three years. They have four children, nine grandchildren, and five great-grandchildren. Clare’s leukemia, which was in remission for over ten years, has recurred. This time it is considered untreatable. She has decided to forego any of the heroic, life-sustaining measures for which modern medicine is so famous. She and her doctors agree that hospice is her best option. “I’ve done my homework. I’ve shopped around. I interviewed all the hospices in town and have chosen the one I feel will honor my wishes for the kind of end-of-life care I want.”

Clare has lived a rich and full life. “I was a career woman long before there was such a thing as a career woman. I’ve always been a take-charge kind of gal. This leukemia may very well kill me, but it will never get the best of me.” Her illness has made her very frail. Her skin is almost translucent. She has an otherworldly look about her, but there is no mistaking her remarkably robust spirit.

Her youngest son Stan, her one and only ally in the family, brought her to the interview and will see that she makes it to each meeting. Stan says, “Oh yeah, she’s feisty all right. There’s no flies on her, and the ones that are there are paying rent.”

Clare’s an avid pantheist. “God is everywhere and in everything. I have always had a close and abiding relationship with God.” Her faith has sustained and comforted her all of her life and she is at peace.

Clare’s biggest concern is her family. They are pressuring her to fight against death even though she doesn’t want to. She wishes that they would join her in preparing for her death rather than denying the inevitable. “I worry about how they will manage when I’m gone. And even though I’m ready to die, I feel as though I need their permission before I can take my leave.”

YOUR FELLOW PARTICIPANTS — #4 Raymond

We continue our sneak preview of the ten people who will be joining you in the on-the-page support group in The Amateur’s Guide To Death and Dying; Enhancing the End of Life. You’ll have plenty of opportunity to get to know them better once you start the book, but until then, these thumbnail sketches will serve as a handy reference.

Raymond, 50, is a social worker employed by a home health care agency in San Francisco. He is thinking about applying for a position in the agency’s hospice program, but he’s not quite sure he’s ready for the responsibility. “I need to better understand my own feelings about death and dying before I can hope to assist anyone else.” He hopes this group will help him do this. “If I’m going to do this work, I want to do it well.”

Raymond’s mother died of ovarian cancer when he was seven years old, but he never really processed the loss. Now a dear friend of long standing, Joann, is also dying of cancer. Joann’s imminent death has opened the floodgates of his unresolved grief associated with his mother’s death. “I’m both drawn to Joann and repulsed by her all at the same time. And she knows it. It’s so crazy. You should see me. I’m confused and disoriented, which is not at all like me.”

Raymond says that his interest in this group is strictly professional. “I don’t have a life threatening illness myself.” But upon further investigation, Raymond reveals that a recent visit to his doctor disclosed that he is at high risk for heart disease. Raymond is considerably overweight. “I guess I’ve pretty much let myself go to seed. I’ve always been a big guy, big-boned, as my mother would say, but now I’m just Fat with a capital ‘F’”. The heart disease news, while shocking, didn’t come as much of a surprise.

Three years ago Raymond went through a very acrimonious divorce. “My life shattered before my eyes.” His three children, two girls and a boy, live with his ex-wife in another state. He gets to see the kids only on holidays and for a month during the summer. “After the divorce, I just didn’t care if I lived or died. I ballooned. I put on over a hundred pounds in a matter of months. Hey, wait a minute. Maybe that’s why I’m considering this hospice move, and why I’m so ambivalent about Joann, and why I want to do this group. Maybe I need to recover a sense of meaning for my life.”