Safe Sex in the City

NHIVTestingDayWhen was the last time you were tested for HIV? I thought so. This is the 21st century and it’s time to get tested! Heck, get all of your friends and go get tested together on National HIV Testing Day. Take the test. Take control.

I can tell you’re resistant, so let’s play a little game and test your knowledge. The answers will be at the end of the blog. No peeking!!

True or False?

1. It is recommended that everyone between the ages of 15 and 65 get screened for HIV at least once in their lifetime.

2. Untreated HIV is almost universally fatal.

3. You can have HIV and not have any symptoms.

4. You are very likely to infect someone else during the two to four weeks right after becoming infected with HIV yourself.

5. The South has the most number of people living with HIV that other regions of the U.S.

6. Married people can become infected with HIV.

7. Women with HIV should not have children.

8. Young people, ages 13 to 24, are among the fastes growing group of new HIV infections.

9. Heterosexual men and women account for about 25-percent of new HIV infections.

Sometimes we just need to hear someone’s story in their own words. Individuals featured in Let’s Stop HIV Together have shared their stories to raise awareness, fight stigma about HIV, encourage HIV prevention and testing, and champion the power of relationships in the personal and public fight to stop HIV. These are people just like you and me.

True or False Revealed

1. It is recommended that everyone between the ages of 13 and 65 get screened for HIV at least once in their lifetime. TRUE.

The CDC recommends that everyone between the ages of 13 and 64 get tested at least once as part of routine health care. Almost one in five people in the United States who have HIV do not know they are infected.

HIV is spread through unprotected sex and drug-injecting behaviors (plus mother to child), so people who engage in these behaviors should get tested more often. If you can answer “Yes” to any of these questions, you need to get tested more often.

  • Have you had unprotected sex (sex without a condom)—anal, vaginal, or oral—with men who have sex with men or with multiple partners since your last HIV test?
  • Have you injected drugs (including steroids, hormones, or silicone) and shared equipment (or works, such as needles and syringes) with others?
  • Have you exchanged sex for drugs or money?
  • Have you been diagnosed with or sought treatment for hepatitis, tuberculosis (TB), or asexually transmitted infection (STI), like syphilis?
  • Have you had unprotected sex with someone who could answer yes to any of the above questions or someone whose history you don’t know?

You should also get tested if

  • You have been sexually assaulted.
  • You are a woman who is planning to get pregnant or who is pregnant.

2. Untreated HIV is almost universally fatal. TRUE.

HIV disease has a well-documented progression. Untreated, HIV is almost universally fatal because it eventually overwhelms the immune system—resulting in acquired immunodeficiency syndrome (AIDS). HIV treatment helps people at all stages of the disease, and treatment can slow or prevent progression from one stage to the next. That’s why it is so important to know your status!

3. You can have HIV and not have any symptoms. TRUE.

The only way to know if you are infected with HIV is to be tested. You cannot rely on symptoms to know whether you have HIV. Many people who are infected with HIV do not have any symptoms at all for 10 years or more.

4. You are very likely to infect someone else during the two to four weeks right after becoming infected with HIV yourself. TRUE.

Within 2 to 4 weeks after infection with HIV, large amounts of HIV are being produced in your body. Your ability to spread HIV is highest during this stage because the amount of virus in the blood is very high. And most people do not even know they are infected.

5. The South has the most number of people living with HIV than other regions of the U.S. TRUE.

So much for abstinence, monogamy, and the resisting sexual sin our bible-belt brethren espouse.

6. Married people can become infected with HIV. TRUE.

Now if you’re married AND monogamous AND you both tested negative for HIV, then you’re not in any risk category. However, if you or your spouse has been sexually active with another, whether male or female (I know, TMI, but reality is reality), then you need to get tested.

7. Women with HIV should not have children. FALSE.

HIV testing is recommended for all pregnant women. Pregnant women who test positive for HIV have many op­tions to stay healthy and protect their babies from becoming HIV infected.

8. Young people, ages 13 to 24, are among the fastes growing group of new HIV infections. TRUE.

Young people, aged 13-24 are especially affected by HIV. They comprise 16% of the US population, but account for 26% of all new HIV infections in 2010 (most recent statistics). Half of high school students report having had sex, but CDC data show that only 13 percent have ever been tested for HIV.

9. Heterosexual men and women account for about 25-percent of new HIV infections. TRUE.

  • Heterosexuals: 25%
  • Men having sex with men (MSM): 63%
  • Injection drug use (IDU): 8%
  • MSM and IDU: 3%

Take the test. Take control.

Life Goes On – Help

the wind does not touch meThe resiliency of the human spirit is awe-inspiring. We have an incredible capacity to function in the midst of less-than-ideal circumstances. Somehow we pull it together and keep plodding until we emerge from the mists of disaster.

That’s not to say we don’t have our moments and wonder exactly how we will survive. Death, illness, divorce, parenting, chemical and emotional dependencies, unemployment, failed plans, accidents, natural disaster, loneliness, war – the list is as endless as we are unique – are common to all of us. Even though we know there are others who have experienced and survived similar experiences, it’s common to feel alone and isolated. It’s a fine line between setting ourself apart for healing and reaching out or coming alongside someone for help.

Writing blog posts about gun deaths has brought me into contact with some really incredible people. These are parents, friends, spouses, children, colleagues, neighbors, and grandparents of people you have lost loved ones in murder/suicides, drive-by shootings, suicide, accidents, even homicides. Most of us don’t anticipate having to say goodbye to someone we love killed by a firearm. Yet, most of these courageous people look for and find something meaningful as a way to honor the one they love, motivated by the fact they don’t want their loved one’s death to have been in vain.

Receiving help and finding ways to help others when the time is right brings both closure and meaning to something difficult. I’m the first to acknowledge that many people who want to be helpful aren’t helpful at all. When you’re in the abyss, the last thing you want to do is deal with unhelpful people. However, there usually are a tiny handful of trusted confidants who will listen and be truly helpful with practical things while you heal.

In my post, Life Goes OnI mentioned a passage of scripture that speaks to the unique position someone who’s “been there”.

Blessed be … the God of all consolation, who consoles us in all our affliction, so that we may be able to console those who are in any affliction with the consolation with which we ourselves are consoled by God (II Corinthians 1:3-4).

Sometimes something gets lost in translation and that’s what happens in this passage. This letter to the church in Corinth was written in the vernacular language, Koine Greek. Paraklesis is the Koine Greek word we translate for console. The literal translation is called alongside. In other words, God comes alongside us to comfort us in our distress. We, in turn, are then called to come alongside another to bring comfort to someone else in their distress.

I’ve always said that God’s choicest counselors are those “who have been there”. Someone who’s gone through something similar as you knows what was helpful and what wasn’t. You, in turn, will be able to share your insights and practical tips to someone else. Heartfelt support or help is a precious gift both to receive and to give.

It would be nice if the resiliency of our human spirit didn’t have to be so tested, leaving us to wonder if we really will be able to go one with our life. But alas, that’s not to be this side of eternity. Instead, in those time, may we lean into the strong arms of God and others who come alongside to comfort us. And may we take our own turn to come alongside another when they are in need of a caring soul.


Risk and Rewards

photoHow often do we go through life consciously evaluating the risks and rewards of our choices and behavior? My guess is that we spend a considerable about of time contemplating our education, career path, life partner, house purchase, and our next vacation. We can even recite a litany of of dos and don’ts: don’t drink and drive, do wear your seat belt, don’t put yourself in unsafe situations, do use a condom.

If we know all this, then why do people still drink and drive, not wear seat belts, don’t keep themselves safe, and don’t use condoms? We know what we need to do, but we may not do it all of the time or speak up when necessary.

Here are some interesting results from a 2011 Center for Disease Control and Prevention asked of students in the United States:

  • Percentage of high school students who rarely or never wore a seat belt when riding in a car when driven by somebody else: 7.7% (Male: 8.9%; Female: 6.3%)
  • Percentage of high school students who rode in a car or other vehicle with someone who had been drinking alcohol one or more times in previous 30 days: 24.1% (Male: 23.3%; Female: 24.9%)
  • Percentage of high school students who carried a weapon (gun, knife, or club) on at least once occasion in previous 30 days: 16.6% (Male: 25.9%; Female: 6.8%)
  • Percentage of high school students who attempted suicide one or more times in previous 12 months: 7.8% (Male: 5.8%; 9.8%). This statistic appears to be underreported as the national statistic is closer to 17%.
  • Percentage of high school students who smoked cigarettes during at least one day during the month: 18.1% (Male: 19.9%; Female: 16.1%)
  • Percentage of high school students who had at least one drink of alcohol on at least one day during the past 30 days: 38.7% (Male: 39.5%; Female: 37.9%)
  • Percentage of high school students who used marijuana at least one time in their life: 39.9% (Male: 42.5%; Female: 37.2%)
  • Percentage of high school students who used methamphetamines at least in their life: 3.8% (Male: 4.5%; Female: 3.0%)
  • Percentage of high school students who used a needle to inject any illegal drug into their body at least once: 2.3% (Male: 2.9%; Female: 1.6%)
  • Percentage of high school students who ever had sexual intercourse: 47.4% (Male: 49.2%; Female: 45.6%)
  • Percentage of high school students who had sexual intercourse with 4 or more people: 15.3% (Male: 17.8%; 12.6%)
  • Percentage of high school students who use a condom during last sexual intercourse (among sexually active students): 60.2% (Male: 67%; Female: 53.6%)

These statistics tell me that we need to be having more conversations with young people! The more risky behaviors a person participate, the greater the chance they will contract HIV. Education and information must continue to be available, but we need to shift the conversation beyond the dos and don’ts to the factors that contribute to the risky behaviors and stigma associated with sexuality, addiction, suicide, and bullying. 

The NorCal AIDS Cycle concluded with 119 cyclists and and equal number of support people riding into the Sacramento Capitol, raising over $327,000 for direct services for those living with HIV/AIDS. It was a spectacular sight!

What’s even more spectacular are the people who are working tirelessly on the front lines, behind the scenes, and inconspicuously to change the conversation. Zero new HIV infections by 2015 is possible, but we must first empower our young people with understanding and skills that they are worthy of a whole, healthy, lifestyle of their choosing.


Cycling for a Cause

NorCalAIDSCycleTeamOne hundred-four cyclists pedaled off this morning for a 330-mile, 3-1/2 day trek around northern California to raise money and awareness for HIV/AIDS. This is the ninth year of the ride and the second year my sister, Janet, is riding. Not to brag (well, maybe a little), but she was the top fundraiser for Team CARES. Many of YOU generously donated to this worthy cause which is the only fundraiser for HIV/AIDS services in northern California.

Janet is a nurse at UC Davis Medical Center and has had many patients with HIV and AIDS over the years. However, when her nephew (my son) tested positive for HIV, she decided to take a more personal investment in the cause and ride with Team CARES as part of the NorCal AIDS Cycle.

My sister has always been athletic and competed in triathlons, century rides, and just about every sport. She recently turned 55 (She’ll probably give me the evil eye as she reminds everyone that I’m the older sister), but she can still be intimidating! It wasn’t until I started meeting the other riders, that I realized anyone can do this ride. There are riders in every shape and size, age group, and skill level. In fact, there are a lot of first-time riders and many have HIV themselves.

Every rider is riding for someone. Many have lost family members and friends to AIDS. Those with HIV ride to show others that life doesn’t end with a diagnosis. The riders are also ambassadors encouraging everyone to be informed and get tested.

The riders may receive the glory, but the support team behind the scenes are what make the event so successful. Think of all the logistics of transporting food and gear for 104 riders, making sure the route is clearly marked, the rest stops are adequately equipped and the venues at the end of each day, ready as the riders roll in. Doctors and nurses are also on had to handle any medical need. It’s impressive to see these volunteers, who have dedicated as much time as the riders, step up to make the ride such a great experience for everyone.

As I wrap this post up, my sister texted 75 miles down, 25 to go. The map gives a broad perspective of the route each day. Maybe you can say a private prayer or offer a thoughtful intention for all those involved in this year’s NorCal AIDS Cycle.

You can still donate or find out more if you’re interested in participating in the tenth anniversary ride in 2014!


Dare to Care: NorCal AIDS Cycle

NCACLogoSliderTrue or false:

1. The rate of new HIV infections is going down in the U.S., but not elsewhere in the world.

2. It is possible to reduce the HIV viral load to 0 in an HIV-infected person.

3. The chances of people with HIV passing on the virus to unaffected partners is reduced by 96% if they are treated early.

4. Almost 40 % of new HIV infections are in young people ages 13 to 29.

Three years ago my oldest son was diagnosed with HIV. He and his brother often accompanied me on home visits I made to people dying from AIDS. Often they waited in the hospital waiting room with Mrs. Gordon while Dr. Gordon and I attended the final moments as someone died. He took messages when clients or family members called my home phone (this was the pre-cellphone era), building his own relationship with them when only in elementary school. Back then, everyone I worked with already had AIDS by the time they were seen by a medical professional and they were all dead within four years.

The day he received his diagnosis, he went directly to my brother’s house. When he told Vic his news, they both burst into tears. Then they went to my sister’s, waiting for her to get off work as a nurse, to tell her together. His next call was to his brother. I was the last one he called. How do you tell your mother that her son has a virus that will have to be managed for the rest of his life when everyone she knew with AIDS is now dead?

I am so thankful he’s able to receive comprehensive care through CARES, the largest HIV/AIDS nonprofit clinic in the Sacramento region. Because he was diagnosed and treated early, his HIV is virtually undetectable. He will be on anti-viral drugs for the rest of his life, but he can have a long, fulfilling life.

This is the ninth year CARES has a team of cyclists participating in the NorCal AIDS Cycle. Money raised from the event goes to a handful of nonprofit organizations in the area who provide direct services to those living with HIV/AIDS. This is CARES biggest fundraising event.

8517207219_bc1502f444_mMy sister, Janet, is riding with Team CARES again this year. She was especially close to our brother, being closer in age and living in the same area as him. His suicide in December has been really hard for all of us, but training with Team CARES has been an outlet for her grief. My brother was the main male figure in both my son’s lives and has had an impact on them, especially my oldest son. My son’s team at CARES was indispensable to him during his darkest hours of grief.

Since I can’t ride, the least I can do is ask you to support my sister and her fundraising goals for the ride. She has a website that tells more of her story and connects to the Team CARES donation page. Thank you, in advance, from the bottom of a very grateful heart.

Now, are you ready to see how you scored in the true or false statements?

1. The rate of new HIV infections is going down in the U.S., but not elsewhere in the world. FALSE. The rates are going down faster in other countries than the U.S.

2. It is possible to reduce the HIV viral load to 0 in an HIV-infected person. TRUE. Here’s a great video.

3. The chances of people with HIV passing on the virus to unaffected partners is reduced by 96% if they are treated early. TRUE. Don’t believe me? Read the study.

4. Almost 40 % of new HIV infections are in young people ages 13 to 29. TRUE. Today’s young people are the first generation that has never known a world without HIV and AIDS. In the United States, almost 40 percent of new HIV infections are young people ages 13 to 29.


We’ve come a long way. Thirty years ago AIDS was whispered and feared. Now we have an international day, December 1, dedicated to HIV/AIDS awareness. Once HIV was a ticking death sentence and now we’re working toward an AIDS-free generation and getting to zero new HIV infections for women and children. It’s taken a lot of work, great commitment, and many sacrificed lives but there is hope.

While searching old files for something specific, I ran across a file folder with clippings, pictures, certifications, and memorial services from my early work with AIDS. I thought I’d honor World AIDS Day by remembering someone from the past.

David had just turned 29 when he died in 1987. We held his services at Grace Cathedral in San Francisco where he was a member of the esteemed Grace Cathedral Men and Boys Choir. Here’s what I shared that day:

Do you realize that David personally desired for each of you to be here? He did. When David first started planning this service over a year ago, he asked me if it was appropriate to send out invitations to one’s own memorial service. I told him that I had never really heard of anyone doing that. But in typical David style, he thoroughly researched the issue. He informed me that Miss Manners didn’t consider handwritten invitations to one’s service appropriate etiquette. 

David put careful thought and consideration into planning this service. He knew it would be his last earthly statement and he wanted every detail – the location, the Scripture lessons, the selection and performance of the music, and yes, even those who could be here – to be just so. 

David had a message to convey and, for him, the atmosphere and environment were critically important in creating just the right ambiance fir his message. David knew that the majesty and honor and glory of the whole would be greater than the beauty and simplicity of each part. David was  person of wholeness and that’s what part of his message is about. But David was also a person of celebration. He celebrated life. Thus, David planned this time together as a celebration to the glory of God.

Each of us had the privilege of knowing David in some special and intimate way. As his parents, you knew only too well what a precious gift from God he truly was. As family members, you watched him grow up and grew up with him, seeing both that playful and also serious side to his intense character. And as friends and associates, you encountered David and all his complexity at various stages of his ever-dynamic life. Each of us has some precious memory or some lasting experience in which David’s life has touched our own.

David had a dynamic presence about him which drew endeared people to him. He manifested a rare depth and richness of personality so seldom encountered in others, but especially someone his age. David was, to be sure, intense and sensitive. Yet that unusual combination of intensity and sensitivity produced in him a quality which set him apart from the mediocre masses. As life layered experiences one upon another, David grew and deepened not only his understanding of himself, but also the One who undergirded his life. David’s inner struggle for wholeness kept him committed to the process of wholeness.

At times it was a painful process. David faced issues that drive many to bitter frustration and ultimate despair. He struggled with questions of sexual orientation and lifesyle; of acceptance and fitting in; of who I am, where am I going, what am I doing with my life. But he approached each issue, acknowledged and addressed it. His life was not characterized by frustration, or confusion, or despair. And David’s earthly life ended in peace. I believe he came to understand the deeper messages of which the Scripture lessons* read were speaking. 

On more than one occasion David talked about feeling like Job. The book of Job provides a profound statement on the subject of the justice of God in light of human suffering. But the manner in which the problem of God’s justice and suffering is conceived and the solution offered by the author of Job is different than our Western concept. Our Western thought is: how can a just and loving God allow innocent people to suffer?

I’m sure many of you have been thinking, “Why David?” In posing the question in this way three possible assumptions are left open: (1) that God is not almighty; (2) that God is not just, that there is an evil element in God’s being; and (3) that humanity is innocent. David knew, as did ancient Israel, that it was indisputable that God is almighty, that God is perfectly just and no human is wholly innocent. 

While most of our conversations were centered on delightful topics, David and I also addressed the difficult topic of suffering. An awful, debilitating disease was ravaging his body and threatening his life and yet David wanted to explore the implications of his suffering and how it fit into his understanding of a God who was central in his life. He never blamed nor accused God because, in his maturity, he recognized his own sense of responsibility for choices and decisions he made.

David grasped the significance of hope that, although the ravages of his disease would eventually bring about his death, he was absolutely certain that death was not the end of existence and that someday he would stand in the presence of the Redeemer; in the presence of none other than God and see God with his own eyes.

There once was a very rich gentleman who purchased a masterpiece from a master painter. It was an exquisite piece of art and he decided that he would have the masteriece hung by the master painter. The two went into the large living room, hanging the masterpiece on this wall and then that, unable to find just the right place. They tried another room, but no, it didn’t seem to quite fit. Finally, utterly frustrated, the mster painter suggested they take out the furniture, hand the painting and replace the furniture. And that’s what they did. They hung the picture and rearranged the durniture so that the exquisite masterpiece could truly be enjoyed.

There’s a spiritual principle which can be applied to this story and it’s one I believe David incorporated into his life. You see, David loved Jesus. David lived parts of his life like the rich gentleman who had a discerning eye for fine, exquisite art and yet recognized his inability to arrange a suitable place from which to display it. He tried to fit Jesus among the furnishings of his life. But David also recognized Jesus as the master painter of his life and began to rearrange his life around the truths that truly fit him, making him a complete and healed individual. Although he questioned and struggled with aspects of his life, David knew in a very real and intimate way the love, acceptance, and forgiveness that comes from God through Jesus Christ. 

It wasn’t David’s style to preach and that’s what’s so beautiful about what David has created for us here. David gave. That’s why it is so important for us to recognize the gift he is giving to us today. Nor would David like us to go away feeling like we had just payed him the special tribute he so deserves.

David acknowledged that his worth and individuality came as a gift from God. I believe that is what David would have us consider today. He knew that only God, through Jesus Christ, could indeed take away that alienation from God which nags and assaults us and makes us feel so absolutely alone and abandoned. David knew Jesus restored life and that he conveys life to the believer so that death will never triumph over him … and that is to the glory of God.

Millions, like David, have lost their lives to AIDS and millions more, like my son, are infected with HIV. We know how to stop the spread of HIV. It starts with being aware. Know the facts. Get tested. Live.

Scripture lessons: Job 19:21-27; Revelation 21:2-7; John 11:21-27.

A Texas Double Take


It’s autumn wedding season in the Texas Hill Country. The mild weather and beautiful locales throughout the Hill Country make this a desirable place for destination weddings.  The Hill Country is centrally located, so getting here isn’t too burdensome for most people to get here. The abundance of wineries, ranches, and luxury bed and breakfasts make for a wonderful get-away experience.

Probably two-thirds I officiate every year are for couples who don’t live in the area. That means I see a lot of different marriage licenses. Texas does not have a standard marriage license used by all counties. Instead, each county has its own design. All of the marriage licenses I’ve seen have a surprisingly minimal amount of information. Witnesses aren’t even necessary. Besides the county clerk, I’m the only person signing the license.

I was signing the marriage license of a couple whose wedding I officiated this past weekend when I noticed something out of the ordinary that caused me to do a double take. Added in, just above where the county clerk signs, was a statement affirming that the person signing had given proper paperwork regarding HIV/AIDS to the couple applying for the marriage license. This statement was right on the marriage license itself! The same marriage license that people frame.

Sometimes I just don’t get how things are done in Texas. Texas has one of the highest rates of AIDS diagnoses when someone comes in to be tested for HIV. Because they already have AIDS when they’re tested, they have been living with HIV without knowing it for quite some time. Not only have they been living with HIV, they have also been sharing their HIV with everyone with whom they’ve been sexually active. And who knows how many people that is!

Early detection and treatment of HIV most often prevents HIV from becoming AIDS. Unfortunately, now that this person has AIDS, their health has suddenly become much more complicated than if they were tested and treated early on.

I wonder when and where Texans learn about STDs (sexually transmitted diseases) and HIV/AIDS? The subject is forbidden to be brought up in public schools. I can almost guarantee churches aren’t talking about it and most couple do not receive any premarital counseling prior to getting married. Since blood tests are no longer required for couple getting married, the subject isn’t mentioned on the marriage licenses application. The marriage license – a document most couples don’t even look at until they receive it in the mail after it’s been recorded in the county office – is not the best or appropriate place to bring up this delicate and difficult topic!

Couple place an incredible amount of unspoken trust in each other. They live together and buy homes together before marriage, but don’t seriously broach topics like sex, money, and alcohol. These aren’t easy topics for anyone to discuss, but marriage is full of difficult areas. Marriage is to be the safe haven where each is accepted unconditionally for who they are and where you commit to be there for each other in sickness and in health, for richer, for poorer.

Marriage will also have enough surprises of its own. I pray that one of those surprises for a couple is NOT learning their new child has HIV when she is born. Talk about it. Get tested. HIV is treatable and couples still can have children even if both parents have HIV…BUT you must be treating the HIV.

And Texas, stop burying your head in the sand about sexuality and sexual practices. It’s happening! And it’s happening before a couple receives their marriage license in the mail. Covering your liability by placing a statement on a marriage license is not the way to deal with the reality of HIV/AIDS.

330 Miles Forward


The NorCal AIDS Cycle 2012 is now in the history books. Part of that history is the $304,000 raised for HIV/AIDS services in the Sacramento, California area! Another part of that history is my sister-the-nurse rode those 330 miles and my son slaved behind the scenes supporting the riders. Next year’s ride is already being planned!

The NorCal AIDS Cycle was a 330 mile ride over four days through the scenic Sierra Nevada foothills in northern California. The money raised goes directly into the organizations providing services for those living with HIV/AIDS in northern California. The CARES Clinic in Sacramento is one of those organizations. Team CARES was the largest group of riders and volunteers and raised the most money. In fact, the physician who founded the CARES Clinic rode, celebrating his 73rd birthday on the ride and my son’s physician was an organizer and rode.

Fundraisers, like this, are an essential part of non-profit organizations now more than ever. With all of the significant federal and state budget cuts, organizations rely on generous community support now more than ever. Prevention of HIV is cheaper than treatment of HIV and treatment of HIV is cheaper than managing AIDS. HIV is a $40,000 per year illness, so you can see how prevention (education, safer sex practices, testing) is cheaper than treating HIV! Once HIV develops into AIDS, medical costs only increase as medical issues expand, become more difficult and costly to treat, and long-term health becomes complicated and compromised.

With one in five people in the United States living with HIV and not knowing it, this issue impacts all of us! The global statistics are even more grim, especially since many of those infected don’t have access to any health care and issues of poverty, sex-slavery and other social issues make the overall issue more complex.

Today there is hope where there was only a death sentence when I first started working with AIDS in 1984. We now know how HIV is transmitted and what to do to prevent becoming infected. We know how to prevent HIV-infected mothers from transmitting HIV to their unborn child. We know that with early diagnosis (that means getting tested) and getting started on treatment, you can live a long, productive life with HIV. The effective treatments available today keep many from ever going on to developing AIDS. As with most medical research, much has been learned about other conditions and how viruses maneuver while researching and studying HIV/AIDS. Disease is always affected by social constructs and HIV/AIDS is no different. Many good things are coming out of something that once was hopeless and completely devastating.

My sister is already planning on participating next year. I wouldn’t be surprised if my logistically-gifted son takes over the support team. A heartfelt thanks to all of you who supported them financially and thoughtfully! As with everything in life, a caring community makes all the difference.


The Long Haul

Peter and Jani

The oral vaccine for polio was discovered in my lifetime. Except for a few isolated incidences, polio has essentially been eradicated. Small pox, another deadly disease that those of us of a certain age had to be inoculated against before starting school, is also essentially eradicated. Tuberculosis (TB) and HIV, however, continue to challenge world health organizations. With global support and early testing, detection, and treatment worldwide, we could have no new cases of TB and HIV by 2015.

I was fortunate to be vaccinated against polio and small pox. My best friend in second grade, however, contracted polio before she could be vaccinated. She wore braces on her legs and had the horrible stigma of being the only person in elementary school with polio. You can imagine how ugly kids were to her.

TB and HIV are another story. I was a chaplain at a major Army hospital in the early 1980s. One of the patients I routinely saw was diagnosed with lung cancer. I would sit on the edge of his bed and hold his hand while we talked. Inevitably he’d have a fit of coughing when he tried to talk. It was awful seeing him struggle to breathe or cough up what looked like his lungs.

I was getting ready to make my usually rounds one day and one of the doctors called me aside. He wanted me to have a test for TB right then and there. Apparently, my patient didn’t have lung cancer. He had tuberculosis and I now had inactive TB.

Shortly after I started my year of treatment, my sons and I were in California visiting my family for Christmas. I received a call from the Colorado Public Health Department requesting that my sons be tested immediately for TB. Their licensed day care provider had family visiting from Pakistan and one of the family members presented in the emergency room with active TB! Now my sons would be starting a year of medicine.

We were fortunate to be living in a country that takes public health issues seriously and has ways of quickly mobilizing to track, notify, and treat people with communicable diseases. When my son was diagnosed with HIV, there was a protocol he had to follow to protect himself and others.

We may think we don’t need to be concerned about other countries’ health concerns or even health concerns we don’t think impact us directly. Those days are long gone. Because we are a global community, we are all impacted and it serves all of us to be invested in wrangling TB and HIV out of existence. We need to fund global testing and treatment. We need to be educated and tested ourselves. We have the answers and we know what to do. With a little concerted effort, we can meet the global goal of no new cases by 2015!

If you’re looking for a simple way to be involved, my sister is participating in the upcoming NorCall AIDS Cycle. My son is part of the support crew for Team CARES. Your donation goes to the clinic that directly benefits my son and others! Oh, and the picture above is my sister, Janet and my son, Peter.

Baseball, Basketball and HIV

Baseball and Basketball

Humor me and play along. What do baseball, basketball and HIV awareness all have in common? I know you will get it. After all it’s March Madness and the final four NCAA basketball teams will be playing soon (thank goodness!). It’s almost the beginning of baseball season (go San Francisco Giants!). I’m going to be on a conference call with other faith leaders talking about the U.S. budget and faith. I know there are some, including my representative here in Texas, who want to cut aid for HIV/AIDS by ten-percent (ugh!).

Have you figured out the common denominator? It’s Magic Johnson! Magic Johnson is a basketball Hall of Famer who, also played in NCAA championships when he was in college. He is the recent lead new owner of the Los Angeles Dodgers baseball team. And, he’s been living with HIV for over twenty years. In fact, he has a foundation that, among other things, brings awareness to HIV and emphasizes early testing.

Magic Johnson found out he had HIV during a routine physical when he was playing basketball with the LA Lakers. It was 1991. While a lot was known about HIV by then, there still was a stigma and a lot of fear still surrounding HIV and AIDS. Johnson’s willingness to publicly step forward was a pivotal moment for HIV awareness. He was a major and popular sports icon who was admitting to having a disease that stigmatized and ostracized the people who were open about it.

I think that’s when public acceptance and awareness of HIV/AIDS finally began to change. It also helped those of us in the field finally have some leverage with education, safer sex practices, and testing. The heterosexual population had to face they too were vulnerable. Magic Johnson, becoming a spokesperson and advocate, helped changed the conversation around HIV/AIDS.

There are approximately 1.2 people in the U.S. living with HIV. One in five, or 20-percent, are not aware they have HIV. The number of people living with HIV infection is higher now than ever before. Part of that has to do with fewer people dying from AIDS as a result of better drug therapies. The alarming fact is the number of new cases has remained stable since the late 1990s. That means the opportunity for transmission still remains high because the number of cases is remaining stable.

The majority of persons living with HIV do not transmit HIV to others. This means that at least 95% of those living with HIV infection did not transmit the virus to others that year–an 89% decline in the estimated rate of HIV transmission since the peak level of new infections in the mid-1980s. The decline in transmission is likely due to effective prevention efforts and the availability of improved testing and treatments for HIV. The lower transmission rate is what has enabled HIV incidence to remain stable despite increasing prevalence.

Two populations whose HIV infection rates are increasing are youth (ages 13-29) and over 50! The latest figures (2009) show that 39-percent of all new cases of HIV were in 13 to 29 year-olds! Education, awareness, negotiating skills around safer sexual practices,  and testing are still necessary (hello, Texas,!).

Magic Johnson could have used his celebrity to deny or ignore his HIV status. Instead, he used his celebrity to bring awareness and advocacy to a public health crisis that still affects us, and yet is preventable! Someone you know has HIV, even if they themselves don’t know. Do your part. Be informed. Get tested. Support causes that promote education, testing, and client care.

Note: My sister is riding with Team CARES in the NorCAL AIDS Cycle to raise money for the CARES clinic in Sacramento where my son, who is living with HIV, receives services. Check out her blog to learn more.

If you’re new to my blog, check out my series on HIV/AIDS. The newer posts within that topic will be first. Once you’ve clicked on the topic, you may want to scroll to the beginning. I share some of my experiences working in the field during the early years.


Open Hearted


My athletic (younger) sister the nurse is embarking on a new adventure. This is the same sister who organized us for the Sacramento AIDS Walk last year. This year she’s participating in the NorCal AIDS Cycle … a 330 mile, four day event in beautiful northern California to raise money for HIV/AIDS.

She’s also started a blog to keep us all informed on her training and to help keep herself motivated for the training. She’s riding with Team CARES, representing the clinic where my son receives support. I wish I could participate, but I’ll have to be content being a cheerleader from the sidelines.

I love the title for her blog OpenHearted. It describes her perfectly and her caring attitude is what makes her such a wonderful nurse. Why not subscribe to her blog and you’ll receive it right into your reader or email! You can stay up on her training and what’s being done for HIV/AIDS. Check it out!

Last week I saw some alarming statistics for the U.S. While the statistics for estimated rate of annual HIV infection remained stable for the reporting period (2006-2009), the rates for HIV infection among young people are increasing significantly! For the same reporting period, the rates for infection among young people 15-19 years increased 25% and 31% for persons aged 20-24 years! Current local stats in urban areas are bearing out that increase. S-c-a-r-y! And that’s just the United States!

We can’t become complacent and we can’t not talk about this! I live in a rural area and HIV/AIDS is not talked about in the public schools. Well, abstinence is talked about. Yet these same kids are sexually active, having babies. Last year, a 12 year old in our town had a baby! It’s the same age group with increased HIV infection. This is a huge public health issue here in the U.S. and we must face it.

Obviously, this is a topic that’s important to me. A generation of no new HIV infection is within our reach! But we must make sure that everyone, including our young people, are informed and have access to what it takes (condoms!) for reducing their risk of HIV infection.

By the way, do you think my sister and I look alike? Her picture is on her site.

Getting to Zero

World AIDS Day 2011

When I was in the second grade, I had a friend who had polio. Her name was Gail and she wore braces on both of her legs to help her walk. She also was the only person in our class that wore glasses. She was taller than me and had really pretty long brown hair.

Hopscotch was the reigning playground game and I was the hopscotch queen. I had great balance and could jump all of those squares that were occupied with someone else’s lucky hopscotch rock or chain. Gail would stand on the edge of the hopscotch and watch us play.

One day, while we were eating lunch, Gail asked if she could play. I said sure, even though I was worried about how she was going to hop on one foot, much less bend down and get her rock or skip a square. But she was excited. We showed up at the hopscotch and I announced that Gail would be playing with us. Everyone looked surprised and starting saying all kinds of unkind things. The ugly talk wasn’t anything new. Gail was constantly having mean things said to her, but it had never happened at the hopscotch before. No one wanted to play if Gail was playing. So it was just Gail and me.

Polio is a viral disease that affects the nerves and causes partial or full paralysis. Polio is highly contagious and was a worldwide epidemic between the 1840s and the 1950s. As a result of a massive, global vaccination campaign over the past 20 years, polio exists only in a few countries in Africa and Asia.

Today is World AIDS Day. After 30 years, HIV/AIDS awareness, testing and treatment has been effective in many areas, but we are nowhere near eradicating HIV/AIDS. Since there still is no vaccine, education, prevention, and early treatment are our best means of eradicating HIV/AIDS for now.

We cannot let up on our efforts in the U.S. or anywhere else in the world. There are still more new cases of HIV than those being treated. Just in the United States, one in every five persons does not even know they have HIV. Four out of five persons with the virus do not have their disease under control.

An AIDS-free generation is possible. First, virtually no children are born with the virus. Second, as these children become teenagers and adults, they are at far lower risk of becoming infected than they would be today thanks to a wide range of prevention tools. Third, if they do acquire HIV, they have access to treatment that helps prevent them from developing AIDS and passing the virus on to others.

We have the knowledge and interventions NOW for an AIDS-free generation. Getting to zero is possible if we – the researchers and scientists, the public health docs and nurses and other personnel, the community health workers, the funders and donors, the government officials, the business leaders, philanthropies, and faith communities – all join together in this quite remarkable way to combat this disease keep focused on the future … like they did for polio.


Capital City AIDS Walk

Peter and me

“I don’t know what to do,” were the first words I spoke when I was told I was HIV positive. New to the area, jobless, uninsured, with only my family for support; I didn’t have a clue what to do. From being tested, to getting help from a mental health therapist, to making medical decisions such as when to start anti-viral medications, CARES has been the support I needed to learn how to live with HIV. One and a half years later, I still rely on the support, expertise, education and compassion of CARES and its staff to help me thrive with this life changing event. Thank you for joining team DARE TO CARE as we walk for others like me– and in memory of those who have gone before us– as we join the fight to end this disease (My Son).

Dare to Care team
It was a glorious day for the Capitol City AIDS Walk in Sacramento Sunday! Our Dare to Care team of 26 gathered at the Capitol steps at 7:30 AM, no easy feat with small cherubs. Thankfully, Starbucks was a sponsor and my son’s partner brought doughnuts, so everyone was fueled for the walk. Our youngest walker was my 15-month granddaughter and our oldest walkers were my 76-year old parents!

My nurse sister and HIV son organized our team. Colleagues and daughters of my sister (UC Davis Medical Center was also a sponsor), family friends (I officiated their wedding 20 years ago!) and one of their daughters, a friend of my mother’s (who I also count as part of Eternal Scheme community), my parents, my brother, sister-in-law, three teen nieces, my son, daughter-in-law and their three daughters, and my saintly husband and me rounded out our team.

The great thing about walking is getting to talk to everyone! I hadn’t seen the couple whose wedding I did in eons, although the wife has been reading my blog since it’s inception. I had never met my sister’s colleagues and their daughters. I knew my Mom’s friend followed my blog and it was such a blessing meeting her and having a chance getting to know one another! After having raised two sons, having nieces and granddaughters gives me lots of girlie insight. And, of course, my family is so supportive of my son and each other!

Because of fundraisers like this, many of the tell-tale opportunistic infections that were unavoidable when I was immersed in AIDS work umpteen years ago are virtually nonexistent. Research has contributed to understanding the HIV virus, how it behaves, and insight into significantly improved treatments…especially with early detection. Research findings have also provided better understanding of other diseases, like cancer, and offered more treatment possibilities for other diseases and health concerns as well.

Advocacy and laws have been enacted to protect those living with HIV/AIDS from employment discrimination and medical record privacy…something we ALL benefit from. We know how to prevent the spread of HIV and still have much work to do to continue educating and encouraging all people to use safe sexual practices. Abstinence states, like Texas, need to wake up to reality! We need to make sure that those in the global south have access to condoms and healthcare. We also need to encourage economic opportunities so women and children aren’t forced to become sex workers in order to feed their families.

Millions of people throughout our planet have died from AIDS or health compromises due to HIV. The NAMES Project, also known as the AIDS Quilt, began in 1987 as a way to personalize the devastation of AIDS. After all, these are people, not a statistic. Quilt squares are created by friends and family to honor their loved one. Squares are then pieced together with other squares, forming a unique, beautiful memorial to those who have died. Sections of the Quilt have traveled across the globe for viewing.

The International AIDS Conference will be in Washington D.C. in July 2012. The NAMES Project is planning to “blanket” all of D.C. with the Quilt. Now that will be a sight to see! I’ll be adding information to that as it becomes available. In the meantime, we’re planning to participate in the Capitol City AIDS Walk 2012! The more the merrier and the more we raise!

Peter and Jani
Jani and mandrel
Jennifer / mom
Kristie, Peter, McKenna, Keana, Cassidy
Janet and girls
Peter, Martin, kristie
Luke, Sarah, Maia, aliya
Vic and dad
Sarah, Peter, Luke
Some nieces/Maia
Best Sarah / aliya/nieces
Peter Kristie Keana
Sam and me
Peter and Luke
Boys and me

Not Forgotten

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Where has this summer gone?!? June 2011 marked the thirty-year anniversary of the HIV/AIDS saga. I’ve been sharing my memories of working with the early years of AIDS,  1984-1993, as a prelude to the Capital City AIDS Walk in Sacramento, California September 18.

Our Dare to Care Team has been emailing, texting, posting, and tweeting to build our team and donations. Yes, you still can donate! Four generations of my family are walking. UC Davis Medical Center nurse friends of my sister, family friends, and some from our Eternal Scheme community are joining us! I can’t wait! I’ll be posting pictures and a post all about it.

It’s been an interesting process recollecting the early years of HIV/AIDS. I’m not one to look back. My personal philosophy is to learn from and incorporate what I learn as I go. Experience. Reflect. Apply. Move on. Each time this process is repeated, another layer is added to the well from which to draw wisdom and insight to be integrated into my life…all part of life’s eternal scheme.

There’s been a bittersweetness as I’ve been remembering and sharing in this blog. There’s also been a recognition of the pioneering efforts I had the honor of sharing in. But most importantly, is acknowledging how much richer my life is as a result of working alongside Dr. Gordon and those I knew who died from AIDS. We opened our hearts, cared and cried, lived and died.

When we’re caught up in the busy-ness of life, we often just pass through and occasionally remember to savor the moment. Something happens when we’re faced with mortality, whether our own or someone we know. All of a sudden we’re more cognizant of the sacredness of life. We pay attention  differently and I think it’s because we’re facing grief in some form.

We have many griefs, besides death, in our lives: as we move from childhood to young adulthood to adulthood or when we move residences or careers. We see this circle of life in nature and the changing of the seasons. We know that we too are part of the circle of life, yet we’re never fully prepared when faced with the arc of death.

The early years of AIDS brought a complexity and a younger face to death. Not only were we made aware of a new uncurable disease, the way people contracted the virus forced us to look at and talk about things that made us uncomfortable. We had to talk openly and truthfully about the virus in order to combat fear and encourage people to behave responsibly. We had to confront our own prejudices in order to truly care for, without judgement, the people impacted by AIDS. We were there. We did our part.

I thought I had completed my part with HIV/AIDS. I kept up minimally and spoke up when necessary, but saw that as a closed chapter. Then my son learns he has HIV. Thankfully, it’s not the death sentence it used to be. With treatment, people live a very long time with HIV. Many with HIV will never convert to AIDS. We have come a long ways, but there is still work to be done both locally and globally. As with Hansen’s Disease (leprosy) and polio, with consorted effort, we can do plenty to alleviate and treat HIV.

I’m so glad to be able to walk this year in the AIDS Walk. Last year I was having my second knee replacement when my son, sister, and brother and his family participated. Yes, the AIDS Walk is to raise money and awareness. But it’s also to remember. When our Dare to Care Teams walks on the 18th, I will be remembering Dr. Gordon, Tim, David, Ryan, Julie, Steve, Pat, Dick and the other 183 I personally knew who died from AIDS…and their partners and families. I am grateful for their lives shared with me. They have not been forgotten.


What’s It Going To Take

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I’d like to invite you to join me September 18, 2011 for the C.A.R.E.S. AIDS Walk in Sacramento, California. Four generations of my family, friends, and several Eternal Scheme readers are signed up! If you can’t join us to walk, won’t you please consider donating to our Dare to Care Team? Click here to get the details for walking or donating.

What is it about the human condition that it isn’t until we experience something or someone close to us experiences something that we begin to pay attention? Rarely are we motivated purely by humanitarian altruism or just because it’s the right thing to do.

Polls taken in the 1990s found HIV/AIDS to be the number one health concern among Americans. My guess is that by the 1990s the majority of Americans knew of someone, either personally or by celebrity, who was living with or died from HIV/AIDS. Celebrities were lending their names and efforts to The Cause and serious attention was directed toward education and prevention.

Today, we hear more about the devastation occurring in Africa and India where at least sixty percent of the population is living with HIV/AIDS. We also know that the incidences have more to do with economics and access to health care than we care to acknowledge. After all, why should we care about women and children who become or are sold as sex workers because it is the only way for them to put food in the children’s stomachs? Or that men bring HIV back to their wives when they return to their villages? That’s half-a-globe-away and we have our own issues du jour to consider.

The nurse case manager I worked with left hospice the same time I did, but for different reasons. She understood the need for hospice care to those with AIDS, but thought I was risking too much to be involved myself. A few years later, she called me out of the blue. Her internationally renowned Los Alamos scientist brother, who was married with four children, was dying from AIDS.

The prominent local citizen had nothing good to say about a certain group until he learned his own son, who was part of that group, was dying from AIDS. The large, regional church I served didn’t want to acknowledge there was probably someone with AIDS in the congregation until the organist came forward at a staff meeting. Those who came to see me in my office looked askance at the basket of condoms that sat on my desk, until they thought they should go get tested and wondered if I would come with them to get their results.

I understand the human condition well enough to know this is how it is. What I find both disconcerting and scary are those that refuse to deal in reality in 2011. Texas ranks fourth, behind New York, California, and Florida, in HIV/AIDS cases. Houston ranks eighth in U.S. cities with the most cases. Yet Texas ONLY teaches abstinence to middle and high school students, with nothing about safe-sex practices. The county I live in has the highest teen pregnancy rate in the state, just this year a 13-year old had a baby, and yet no one will challenge this absurd policy! That’s just pregnancy, nothing about HIV.

HIV/AIDS is not going to go away by itself or by burying our heads in the sand. It also doesn’t have to be the only social-health issue we talk about. But it needs to be acknowledged and we must do the right thing.

Bonus: Check out this brief article and interactive map.

June 2011 marked the 30th anniversary of HIV/AIDS. This is another reflection from my experience working with HIV/AIDS, 1984-1993. You can catch up on previous installments by clicking on HIV/AIDS in the Topics box. 

Miss Manners and Mozart

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June 2011 marked the 30th anniversary of HIV/AIDS. This is another reflection from my experience working with HIV/AIDS, 1984-1993. You can catch up on previous installments by clicking on HIV/AIDS in the Topics box. 

David was a Miss Manners maven. He was also an incredible organist and sang in The Choir of Men and Boys at Grace Cathedral in San Francisco. Like most young people, he fled the Central Coast to attend college and settled in San Francisco after graduating.

David was in his late twenties when AIDS started to really impact his life. When he could no longer work, he gave up his life in San Francisco and moved back home to his parents’ in Atascadero. As you can imagine, he was bitter and angry. Dr. Gordon encouraged him to contact me, but he didn’t want to have anything to do with anyone. I had already been in touch with his wonderful parents, and decided to give David some time before hunting him down.

My sons and I lived next to the little, and I mean l-i-t-t-l-e,  Episcopal church in Atascadero. One day I heard this beautiful organ music wafting from the church. I was stunned! I knew the regular organist couldn’t make that kind of music come out of their little electronic organ! I had to find out who could make that kind of music on that kind of instrument.

Small towns never lock anything, so I had no problem letting myself in the door. I snuck in because I didn’t want to disturb whoever was playing. Nor did I want them to stop. Rarely did I hear a great church organist!

He was completely absorbed in his playing and all from memory! I sat there about a half hour before he stopped playing. He got up from the bench and was startled to see me sitting there. I spoke first, complimenting him on his exquisite playing. The tell-tale Kaposi’s could be seen on his face. I suspected this was David. He told me how he learned to play at that very organ when he was growing up. He had only recently moved back. I introduced myself and asked if he was David.

An angry flicker flashed in his eyes, and then resignation. He sat down in a nearby pew and started talking. He talked and cried and talked and cried. Grief and sadness just poured out of him. He was my age, yet grappling with dying, isolation, and the loss of all of his dreams. It was heartbreaking.

Because he also lived in Atascadero, it was convenient to see him. His health deteriorated quickly and when it did, his world closed in around him. Besides his music which he could no longer play, he loved Miss Manners. He had the authoritative Miss Manners volume and would have selections he wanted me to read to him when I came to visit.

I soon came to realize that these selected sections were really stepping off points for David’s commentary on the subject. He had such a dry wit and so completely got into character, that we’d be laughing so hard we couldn’t breathe! That summer I had several weddings I was officiating. David consulted Miss Manners and wedding etiquette to make sure I was in complete Miss Manners compliance even if the couple getting married chose to exhibit lack of class and vulgar taste.

David had only a couple of special requests for his memorial service. He wanted his service at Grace Cathedral in San Francisco where he had been a member of the elite Choir of Men and Boys. He selected the organ pieces he wanted played and selections from Mozart’s Requiem to be sung. I was to officiate. And he wanted his cremains scattered by a select few in the San Francisco Bay while toasting champagne.

David was so excited when he got the sail boat arranged for the scattering. I tried to talk him out of my required presence on that boat, not being a fan of being in water deeper than I am tall. I of course, lost the argument. The beautiful weather on the Bay, the wonderful company, and champagne and delectable hors d’oeuvres made up for any apprehension I had. I secretly thanked David for his foresight!

David’s memorial service was full of beautiful music, wonderful remembrances, close family and friends in a spectacular cathedral! A huge crowd filtered in throughout the service. The music drew people passing by in and there was already the usually crowd in to walk the labyrinth or on Knob Hill sightseeing. I’m sure David was checking Miss Manners to see about the etiquette of crashing a memorial service.

I’d like to invite you to join me September 18, 2011 for the C.A.R.E.S. AIDS Walk in Sacramento, California. Four generations of my family, friends, and several Eternal Scheme readers are signed up! If you can’t join us to walk, won’t you please consider donating to our Dare to Care Team? Click here to get the details for walking or donating.

Longtime Companion

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June 2011 marked the 30th anniversary of HIV/AIDS. This is another reflection from my experience working with HIV/AIDS, 1984-1993. You can catch up on previous installments by clicking on HIV/AIDS in the Topics box. 

Do you remember looking forward to field trips in school? The prospect of no classes and a day away from school outweighed any potentially boring educational venue. Field trips offered something fun and different to look forward to. When you’re sick and and have no hope of getting better, field trips offered a tiny spark of something normal from the past.

One day I was checking in on Kevin and his caregivers. Kevin had AIDS and lived with his partner Steve. When Kevin started being more sick than well, his brother Mark quit his job and moved from San Diego to San Luis Obispo to help with Kevin’s care and support.

It was always fun going to their house. They had impeccable taste, an exquisite Lalique glass art collection, and always had something delectable and gourmet for me to try. We had ongoing philosophical and theological discussions and I never knew what the topic of the day would be. When British theoretical physicist Stephen Hawking’s book A Brief History of Time was published, we all read the book, basically forming a book club with others interested from the neighborhood.

When I arrived that day, Kevin said he knew what we could do for our next field trip! Our mortuary field trip had been a great success and he was hoping to be able to do one more field trip before he couldn’t go out anymore. A new movie was in town and he really wanted to see it. He had already started an invitation list and I was responsible for inviting Dr. and Mrs. Gordon to join us.

The day before our big movie date, Kevin had been in to see Dr. Gordon. He was fighting several infections and in need of a blood transfusion. Without the blood transfusion he wouldn’t be going anywhere. Luckily blood was available and the transfusion scheduled for the next day with plenty of time to still make it to the movie.

Well, that blood did not want to go into Kevin! He did make it to the theater with a few minutes to spare. There were about twenty of us and we just about had the entire theater to ourselves. We were surprised the theater was so empty.

We all settled in our seats. Kevin was on one side of me and Dr. Gordon was on my other side. The movie was Longtime Companion,  the title taken from the phrase the New York Times used in the obituaries of the surviving same-sex partner of someone who died from AIDS in the 1980s. It was the first major release theatrical film dealing with the subject of AIDS.

The movie opened dramatically and graphically, not at all with your typical let’s-ease-into-the-subject-matter. Kevin leaned over to me and said, “With Dr. Gordon here with us, it’s like seeing an R-rated movie with your parents! I’m going to have to apologize to Mrs. Gordon.”

Longtime Companion thoughtfully, sensitively, and accurately portrayed the reality most with AIDS faced in the 1980s. Longtime Companion came out in 1989 and it wasn’t until 1993, with Philadelphia, that the next movie on the subject became mainstream.

You know when there are turning points for people when they bravely share their memories during memorial services. Many spoke about our movie field trip at Kevin’s memorial service, sighting how meaningful it was for them to have something that so profoundly affected their own lives be captured for other audiences to experience.

And Mrs. Gordon? Several years later, I was talking with Mrs. Gordon after her husband’s memorial service. We were sharing some of our fond, non-orthodox experiences around Dr. Gordon and AIDS. Mrs. Gordon put her hand on my arm and said, “You know what was one of the highlights for me? Going to see Longtime Companion with Kevin and everyone.” I’m sure Kevin and Dr. Gordon were sharing a hearty laugh together!

I’d like to invite you to join me September 18, 2011 for the C.A.R.E.S. AIDS Walk in Sacramento, California. Click here to get the details for walking or donating.

Field Trips

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June 2011 marked the 30th anniversary of HIV/AIDS. This is another reflection from my experience working with HIV/AIDS, 1984-1993. You can catch up on previous installments by clicking on HIV/AIDS in the Topics box. 

How do you prepare for your own death when you’re in your 20s or 30s? It’s not a topic that makes the conversation list for any age group. Certainly not for those settling into adulthood and careers with an uncharted future ahead for them.

Elizabeth Kübler-Ross’ groundbreaking book, On Death and Dying, had only been out fourteen years when I was initiating conversations on this very subject with those affected by AIDS. It’s one thing to have these conversations with people who have been fighting a life-threatening illness, who have been eased into their mortality, usually with the help of hospice. It’s another to have these conversations with people who have a life-threatening illness with so many other complexities exacerbated by and because of their illness…and no hospice willing to offer them services.

At some point, someone would ask about final arrangements or we would bring it up if we felt time was running out and the topic had yet to be broached. Dr. Gordon and I each had our own set of priorities. Dr. Gordon wanted permission to perform an autopsy for research purposes. I wanted to know that legal and personal arrangements (wills, property disbursements, special wishes) were complete.

So once again, Dr. Gordon and I were piecing together services and information as fast as the needs were arising. That’s were the idea for field trips to the mortuary emerged.

Only one mortuary in the county would even handle arrangements for someone who died from AIDS. Cremation was mandatory. And the mortuary allowed us to perform autopsies on their premises prior to cremation.

When someone was asking questions about their final arrangements or wondering what was going to happen to their body when they died, I would ask if they’d like to go a field trip to the mortuary. I encouraged them to bring their partner, family, friends, anyone they wanted to include. Dr. Gordon often joined us.

The owner of the mortuary was awesome! He answered questions, showed us around, gave us time alone to talk further. He never brought up money or cost. When someone asked about scattering ashes, he’d tell them what the law was and that whatever wishes they really had, talk to me because he didn’t want to know!

By the end of the visit, they knew what would happen to their body from the time it was picked up from either their home or hospital, where the autopsy was to be performed, who would be there (they always asked if I was going to be with them during the autopsy. That, and because no one else would assist Dr. Gordon, was how I came to being involved), who would be picking up their ashes, and anything else they wondered about.

What was most amazing about these field trips was the sense of having a major unknown addressed. For as intense a subject as death is, inevitably we had some very hilarious moments. Death was seen for what it was, a part of living, and life can be very funny. It was like also a big sigh, now-that’s-been-handled-we-can-move-on. The mystery had been removed and now we could attend to the regular stuff of living.

The mortuary wasn’t the only field trip we had. Next week, I’ll talk about one of our movie field trips!

I’d like to invite you to join me September 18, 2011 for the C.A.R.E.S. AIDS Walk in Sacramento, California. Click here to get the details for walking or donating.


Dare to Care


June 2011 marked the 30th anniversary of HIV/AIDS. This is another reflection from my experience working with HIV/AIDS, 1984-1993. You can catch up on previous installments by clicking on HIV/AIDS in the Topics box.

Dare to Care. That’s the name of our clan’s C.A.R.E.S. AIDS Walk team. I love the name because it’s reminiscent of what I’ve been sharing in my HIV/AIDS blog posts. The early years were definitely all about daring to care! If we weren’t daring to care, who would have cared at all?!?

Thankfully, a lot has changed from those early years of AIDS. We know a lot more about the HIV virus, how to treat it, and how to minimize risk and transmission. There still is no cure, but it’s no longer a death sentence for someone with HIV or even AIDS. With all of the advances in research, there are some very effective treatments. The earlier the detection (that means getting tested), the earlier the start of treatment. As with any public health crisis, it’s all about education, prevention, and treatment. Really not much different than diabetes or heart disease.

Knowing all of this still didn’t prepare me for a call I received last year. My son called to tell me he had HIV. He had already told my sister, brother, and other son. He was worried about how this information would affect me. After all, he grew up with me working around HIV/AIDS. He knew everyone I worked with in those days died. He wasn’t sure if i would equate his news with his death sentence.

No mother is ever prepared for their child to have an injury or illness, but that’s reality. We want our children to be spared all of the traumas of life, even though we know that’s not possible. I’ve always been a proponent that my sons are their own unique beings, raising them (hopefully) to be equipped to handle whatever life tosses their direction. But that still doesn’t change hoping they won’t have to go through some of the learning curves we’ve experienced, even though we know it’s through those experiences we’re grown ourselves.

Once we got those initial tears out of the way, the biggest concern I had was what and where he would receive treatment. One of the many blessings in this whole event, is my sister’s health care connections. She’s a nurse at the UC Davis Medical Center. With a few well-placed inquiries, she learned about the C.A.R.E.S. Clinic there in Sacramento. My son is getting great comprehensive care and I’m grateful that C.A.R.E.S. is there for him.

My siblings and their families supported my son in the AIDS Walk last year. We decided to participate as a family this year. There will be four generations of us walking! Of course, the more the merrier, so we’re inviting our friends and the Eternal Scheme community to join us!

We all care about health care and access to health care. It’s getting harder and harder for those who need it to get it…affordably. Often times someone’s only access is through a clinic like C.A.R.E.S. or the only way someone can afford treatment is through a clinic like C.A.R.E.S. I, for one, am willing to show my support because I know they deliver excellent, comprehensive care for those living with HIV/AIDS…and my son personally benefits.

I know you’re approached by many worthy causes. If you’re interested in donating to or participating in a cause where you know it will directly impact the life of someone you know, I hope you’ll consider donating to or walking with our Dare to Care Team. In the eternal scheme, it’s all of us daring to care together that strengthens, encourages, and supports each of us and those we love.

I’d like to invite you to join me September 18, 2011 for the C.A.R.E.S. AIDS Walk in Sacramento, California. Click here to get the details for walking or donating.

Does It Really Matter?

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June 2011 marked the 30th anniversary of HIV/AIDS. This is another reflection from my experience working with HIV/AIDS, 1984-1993. You can catch up on previous installments by clicking on HIV/AIDS in the Topics box.

I was having lunch with friends the other day. One of my friends asked where I got my hair cut and that led her to asking me if I heard that a well-known hairstylist in our town died recently. I mentioned that the last I heard she was doing well. I officiated a wedding not that long ago where she was the stylist.

Then came the inevitable question: what did she die from?

It’s interesting to think about why we ask that question. I read obituaries. The New York Times almost always mentions the cause of death whereas our small-town paper never mentions how someone died. We tend not to ask how someone who is older died, but almost always ask about someone who is around our own age or younger. Death and illness are subjects we think about, but rarely talk about.

That was definitely the case about AIDS. AIDS highlighted all of the taboo subjects: disease, death, drugs, and sex. And we had to talk about those subjects because they were central to education and education was critical in reducing risk. It was the practical approach. Disease, death, drugs, and sex were not going to miraculous cease and go away. So we tackled the issue directly, talking about the very things no one wanted to talk about. Our message: Information is empowering and helps equip us with making informed decisions about the behaviors people are going to continue to engage in anyway.

On the one hand, we were bringing up the subjects of disease, death, drugs, and sex. On the other hand, we wanted to protect the privacy of those with AIDS. I don’t know about Dr. Gordon, but people routinely asked me, so how did they get AIDS?

The first time I was asked was right after I officiated my second memorial service of the day! Two died that week and we held the services on the weekend to allow for those who were traveling to attend the services. I blurted out, Does it really matter!?! Needless to say, that was a conversation stopper!

There was also a lot of truth in that spontaneous response. It doesn’t matter. We don’t ask how someone contracted cancer or if someone has MS as a result of their lifestyle. Even though the person who asked wasn’t intending judgment, it still was a judgment.

The thing about judgment is that it never solves or enlightens the reality of the situation. It only erects barriers. Judgment also prevents us from experiencing and demonstrating our humanity. My philosophy? The more delicate or difficult the subject, the more sensitivity we need around those subjects.

Yes, AIDS in the 1980s and early 1990s highlighted all of those taboo subjects: disease, death, drugs, and sex. But the reality was it didn’t matter. Someone was still sick, there was no effective treatment at that time, and many were isolated or rejected by family and friends because of fear. And, back then, everyone I worked with died.

Nowadays, people don’t die from HIV or even AIDS. There still is no cure, but treatment is effective…and costly. And, when The Question gets asked…because it still gets asked…I still respond, Does it really matter?

I’d like to invite you to join me September 18, 2011 for the C.A.R.E.S. AIDS Walk in Sacramento, California. I’ll keep you posted with my plans or you can email me!


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June 2011 marked the 30th anniversary of HIV/AIDS. This is another reflection from my experience working with HIV/AIDS, 1984-1993. You can catch up on previous installments by clicking on HIV/AIDS in the Topics box.

I can’t remember exactly how I met Julie. Most likely, Dr. Gordon called me and said he had someone special for me. Even though he told new patients about our services and gave them my card, he always personally gave me a heads up, including their background and medical history. He may have moved to public health in semi-retirement, but all of those years as a psychiatrist and concerns for the psycho-social-spiritual aspects of patient care were still very important to him.

Julie was our first woman with AIDS in the county. Her boyfriend was a prominent vineyard owner with award-winning wines. He met her in Santa Monica, where she lived. He thought she lived in a hovel and encouraged her to relocate to the central coast with him. She hadn’t been in the county very long when she got sick and had to be hospitalized.

Back then, the only hospital where anyone with AIDS could get treatment was the county hospital. Dr. Gordon was the only doctor willing to see patients with AIDS. And, by this time, he and I had a well-oiled operation going. We also had a loose network of volunteers from the gay, lesbian, transgendered community we called upon regularly. There was one assistance worker at the social services office I cultivated a relationship with to streamline the MediCal and disability bureaucracies. There was only one mortuary willing to handle final arrangements which, by law required cremation. We were pretty much a one-stop shop!

Julie was in her late thirties and came to LA, from Ohio, at 18 to make it in Hollywood. She’d led a very colorful life, I’m sure. She had pictures from parties at Hugh Hefner’s mansion, model head shots, and lots of gaps. I, who could usually get people to open up, couldn’t pry much from her about her family. By the time I met her, she hadn’t had any contact with them for over 20 years.

It wasn’t long before her boyfriend distanced himself. He didn’t want to kick her out, but he wasn’t home very much either. He certainly wasn’t emotionally available and Julie was very isolated out at the vineyard. I don’t know what, if anything, he knew of her AIDS, but he wasn’t prepared for it in any event. Who is?

Julie was ever the romantic. Despite her Hollywood lifestyle, she always had a dream of being married, having children, and a house with a white picket fence. She loved having tea parties and Jeanette MacDonald was her favorite movie star.

We became friends. We’d go out to lunch and she’d come over for dinner. She loved visiting with my grandmother and she’d call my sons after school to hear about their day. We experimented with various make-up techniques to cover the Kaposi’s sarcoma that began showing on her face. Kaposi’s are a viral infection that became known as a defining illness of AIDS in the 1980s. We had sleep overs that morphed into Jeanette MacDonald video fests. We talked about men and relationships, the loss of dreams and death.

She loved my sons and cultivated her own relationship with them. She had a wonderful sense of humor and I’d hear them giggling about something with her while fixing dinner. Julie loved cherries and would have seed-spitting contests with them. When she had to be hospitalized to get some medical crisis under control, she’d call the boys and ask if they would be coming with me to visit. She had a way of making little events opportunities for hope.

Julie tried to make the best of a truly terrible situation but sometimes the old demons emerged. She didn’t drink, but managing the morphine prescribed for pain was a challenge. She loved dressing up and going out, but her emaciated frame and unsightly Kaposi’s made it difficult for us to find a place where we’d be welcome to have lunch. As the only woman with AIDS, there wasn’t anyone else with AIDS whom she could share. She knew her time was limited, but no one ever knew how limited or what ultimately was in store for them.

One afternoon, I got home just after the boys got home from school. We already had planned to go visit Julie at the hospital. She had already talked to the boys and knew we were going to be on our way soon. She was really looking forward to our visit.

We only lived 15 miles or so from San Luis Obispo, but it still took about a half hour. We got to the hospital and went directly to Julie’s room. She was all alone and I knew something wasn’t quite right. I took the boys out the the waiting area just as Dr. and Mrs. Gordon arrived. Unbeknownst to me (this was in the days before cellphones), Dr. Gordon had just been called by the nursing staff. Mrs. Gordon stayed with the boys in the waiting room and Dr. Gordon and I went back to Julie’s room. She had died just minutes before the boys and I arrived.

None of us expected her death at this time. The drive home was heart-wrenching. Julie was the first of my “people” the boys really knew and had a relationship with. Their tender hearts were grief-stricken and so sad.

I officiated at a small graveside service for Julie. Later that afternoon, the boys and I ate cherries and shared our Julie stories. Sometimes I think of a person’s life, wondering about the hidden history there that no one seems to know. A person may not be remembered by many, but I do know that everyone makes a difference to someone. Julie was one of those people for us. She touched our lives and made a difference to the three of us.

I’d like to invite you to join me September 18, 2011 for the C.A.R.E.S. AIDS Walk in Sacramento, California. I’ll keep you posted with my plans or you can email me!



Not a Gay Disease

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June 2011 marked the 30th anniversary of HIV/AIDS. This is another reflection from my experience working with HIV/AIDS, 1984-1993. You can catch up on previous installments by clicking on HIV/AIDS in the Topics box.

Fear is powerful. Underneath that basic human reaction, fight or flight, resides fear. Sometimes fear precipitates unreasonable reactions. When still working for hospice, I had a client whose early-thirthies wife was dying of lung cancer. He moved her into a trailer on the property (yes, the kind with wheels) and wouldn’t allow their two young sons to see her. He was afraid that he and his sons would “get” cancer from her!

The early years of AIDS exacerbated all kinds of fear in people. Certainly, many were uninformed as to how the virus was transferred between people. Until the virus was isolated and its replicating properties identified, there was a lot of speculation about its origins and how to prevent transmission. Even in the early years, one partner could have the HIV virus and would never go on to develop symptoms for an AIDS diagnosis, while the other partner would quickly develop full-blown AIDS and die.

Fear brought to the surface many people’s fears from internal places that were already confusing for them. If I get AIDS, how will I work and care for myself? Who will be there for me? Or We have seven sons who are all All American collegiate football players. How could one be gay? Or how do I know if the blood transfusion I received after my accident wasn’t donated by an IV drug abuser?

Sometimes fear got in the way of exploring the feelings behind these more difficult internal musings. It was easier to blame and judge all gay men rather than explore one’s own conflicting feelings about the issue. It was easier to put one’s head in the sand and not practice safe sex than to acknowledge taking responsibility for one’s sexual health.

It was a confusing time with lots of new information coming out and the necessity to talk about difficult subjects.

It wasn’t long before our central coast California community was faced with an AIDS diagnosis in a child and a woman. When it was confined to “those people” (aka gay men), people could turn their backs, bury their heads, and pretend it didn’t exist. But when a kindergartner and a prominent winemaker’s girlfriend were diagnosed, people were forced to take notice.

It stirred anew fear.

Ryan Thomas was a 5 year-old kindergartner. He was infected with the virus from a blood transfusion received shortly after his pre-mature birth. He was removed from school after a scuffle with another classmate because administrators were afraid he would transmit AIDS to other students. He was later readmitted to school when a federal court ruled in his favor.

It was a huge landmark decision and one that deeply divided our Atascadero community. My sons were a few years older than Ryan and went to the same school. I was already under scrutiny by the school district because “those people” stayed with us and ate at our table. Not to mention my visibility as a female clergy advocating on behalf of people with AIDS.

As with most things, time, information, and knowing someone with HIV/AIDS helped many to transition from fear to compassion. It’s too bad so many mean words, cruel actions, and unnecessary judgment is the first reaction of many.

Next week, I’ll share about our first woman in the county with AIDS.

I’d like to invite you to join me September 18, 2011 for the C.A.R.E.S. AIDS Walk in Sacramento, California. I’ll keep you posted with my plans or you can email me!

Putting a Face to AIDS

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June 2011 marked the 30th anniversary of HIV/AIDS. This is the fifth reflection from my experience working with HIV/AIDS, 1984-1993. You can catch up on previous installments by clicking on HIV/AIDS in the Topics box.

The early years of AIDS was very scary for most. It was often talked about like the Black Death of the 14th century and the flu pandemic of 1918. Sexual orientation profiling and homophobic reactions ran rampant. People with AIDS were fired from their jobs and hateful things were scrawled on their front doors. Neighborhoods organized and ostracized the same gay couples they had been socializing with for years.

Outreach to at-risk communities was well underway, but the concern that confidentiality would be breached if someone tested positive, was reason enough for someone to put off getting tested. By the time someone was tested, they often already had AIDS. It was like receiving a death sentence.

AIDS was consistently in the media, but fear of the stigma associated with the disease, kept people hidden and isolated. And new cases were presenting at an alarming rate.

Then in 1985, it became known that Hollywood celebrity Rock Hudson had AIDS. He was one of the first major celebrities to put a face to AIDS. Olympic diving champion, Greg Louganis’ HIV diagnosis became public in 1988. The fear and stigma was still there, but recognizable and respected people were willing to speak up.

My elementary school-aged sons and I were living in the same town as my grandmother and her sister, my great-aunt. We were having dinner together one evening and my great-aunt was asking me about our AIDS cases in the county. She was asking all sorts of questions and I was thrilled to be talking with her and my grandmother since my grandmother worried about me being exposed to “God knows what”.

There was a lull in our conversation and I asked her want sparked her interest. Tears came to her eyes and she said her son had recently told her he had AIDS. It was the first time she spoke about it to anyone. I knew people with AIDS, but now someone in my family had AIDS.

Constructive conversations were starting to be had and we were learning more and more about HIV and AIDS, but the overwhelming majority of those diagnosed with AIDS would be dead within six to nine months. Putting a face to AIDS may have made the disease more public, but it didn’t lessen anyone’s fear or grief.

I’d like to invite you to join me September 18, 2011 for the C.A.R.E.S. AIDS Walk in Sacramento, California. I’ll keep you posted with my plans or you can email me!


Have You Been Tested?

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I’m writing this post on National HIV Testing Day, June 27. While many communities have organized publicity efforts on this day to encourage testing for HIV, the real goal is to have people get tested so they can know their HIV status.

It’s estimated that 1 in 5 who have HIV do not know they have it! That means that, not only are they not receiving life-extending treatment, they may be unknowingly spreading the virus to other partners.

Here are some other interesting facts:

  • The number of people living with HIV has risen every year because new infections have remained relatively stable and survival has increased due to improvements in antiretroviral therapy and access to care.
  • Each HIV infection averted saves an estimated $367,000 (2009 dollars) in lifetime medical costs.
  • The proportion of Americans who rate HIV as the most urgent health problem for the nation has reduced from 44% in 1995 to 6% in 2009. Yet, the number of Americans with HIV has increased.
  • More than half of American adults have never been tested for HIV. Yet, testing is the essential element for HIV prevention and treatment. When we do not know our status, we cannot access HIV-specific care, including antiretroviral treatment and other supportive services.
  • Testing sites can be located at They will have listings for FREE, confidential HIV blood tests.

I remember the first time I was tested. Dr. Gordon had suggested I get tested since I was regularly exposed to all kinds of bodily fluids and assisting with autopsies where all kinds of matter was airborne. I was hesitant just like everyone else! Did I really want to know?

I was also doing HIV/AIDS education and wasn’t having much luck convincing people to be tested. So, I set a date that I was going to be tested and invited people to join me. Twenty-seven people showed up!

I’ve been tested many times since, the latest was in September when I donated my own blood for a surgery I was having. Personally, I think testing should be a routine part of healthcare. We don’t think twice about routine mammograms or cholesterol checks. It’s time to take responsibility for our own health and think of HIV testing just like we think of other screenings…especially now.

HIV may not be curable, but it is very treatable. People do not die from HIV and most no longer die from AIDS. It’s time to know.


All That Is Bitter and Sweet


I read just about anything new that comes into our local, rural library. I knew nothing about any of the Judds when I reserved the book. My ever-worldly husband was amazed that I didn’t know about the mother-daughter country singing duo or the actor sister who did a slew of movies. Well, I must revise that. Having watched the Indy 500 in 2010, I knew that Ashley Judd was married to race car winner Dario Franchetti.

I didn’t have any expectations about All That Is Bitter and Sweet. Was I ever wonderfully surprised!

Ashley Judd is an articulate, thoughtful writer. Her personal story unfolds alongside her work on behalf of women and girls in the global south. As she witnesses the abuse and invisibility of girls and women trapped in sexual slavery, ravaged by HIV/AIDS, and the other injustices wrought from no access to education, healthcare, or economic hope, her own experiences of abuse and being invisible are crying out to be voiced too, if only to herself.

This is not your typical tell-all-I’m-a-victum-celebrity story. There is none of that in the book. Her insight is hopeful and affirming and speaks to the inner longings of most of our hearts. Her message is inspiring, but her unconditional love is contagious.

I get asked what books I’m reading and what I recommend for various topics. You’ll find some suggestions in the Recommended Books category. There will be sub-categories by topic to make it easier for you to find books under topics interesting to you. I’ll be adding books regularly. I’m ALWAYS looking for good recommendations myself. Feel free to email me your favorites reads!

Finding Community

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June 2011 marks the 30th anniversary of HIV/AIDS. This is the third reflection from my experience working with HIV/AIDS, 1984-1993. You can catch up on previous installments by clicking on HIV/AIDS in the sidebar to the right.

I’ve lived in urban areas and rural areas. What I’ve noticed is rural areas think they don’t have the same issues and problems as urban areas. There’s a sense of being in a protective cocoon. The perception is that the icky stuff that happens in the big city isn’t happening in their wonderful Norman Rockwell small town.

Time for a reality check. Whatever “it” is, “it’s” happening everywhere. “It” just may not be so evident…initially.

I still remember where I was when I heard, “We don’t have any of those people here.” I had just finishing giving my monthly report to the hospice board. I was stunned! This was the most liberal group of people I encountered in the entire county and they had this kind of attitude about a group of people?!?

I replied, “You mean people with a six months or less prognosis? That’s our clientele.” That started the you-know-who-we’re-talking-about-let’s-dance-around-the-real-issue dialogue. Finally, I asked if they were telling me I could not admit someone with AIDS to our hospice service.

That segued into the what-would-our-donors-think dead-end conversation. They asked for my resignation.

Now that we didn’t have hospice as a resource, we needed to create a community of new resources. That turned out to be a blessing, indeed! A community who were invisible to others around them came out to support and care for those with AIDS. Not only did they mobilize to provide friendship and respite care, they mobilized their financial resources and professional expertise to form a a grass-roots movement!

They booked me for HIV/AIDS education at the gay bars. I’d show up with information and condoms. I’d book them for shifts; my promise was that no one died alone. They’d organize a cocktail party fundraiser (something to experience to believe!), inviting Dr. Gordon and me. We’d enlist their connections to provide services we needed: massage therapy, nutritionists, drivers, therapists. The AIDS Support Network was established and developed as the needs grew. The community emerged in response to a need. We figured it out as we went.

The wonder of community is seeing what evolves. The biblical adage, seek and you will find, was fulfilled beyond any of our wildest imaginations!

Oh and by the way: the hospice closed their doors within two years. And rather than fear something they didn’t want to know about, the population gradually opened their eyes to reality. And it wasn’t so bad after all.

I’d like to invite you to join me September 18, 2011 for the C.A.R.E.S. AIDS Walk in Sacramento, California. There aren’t a lot of details up on the website yet, but if you email me, I’ll keep you posted!


Coming Home to Die

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June 2011 marks the 30th anniversary of HIV/AIDS. This is the second reflection from my experience working with HIV/AIDS, 1984-1993.

I don’t recall now how Dale and I became acquainted. Dale and his partner were active members of the gay and lesbian community in San Luis Obispo. San Francisco, Los Angeles, and New York had burgeoning gay communities, but San Luis Obsipo, on the other hand, had a closeted community.

And for good reason: the county was quite rural and red-neck. As an ordained woman, I wasn’t well-received in most church circles. I filled in for vacationing clergy, but only for the more open-minded denominations. Even then, I was the first woman any of those church-goers had ever witnessed! When I was introduced to Dale, a whole new community opened up to me! Thank God.

I called on Dale and asked if he would be willing visit with our vacationing AIDS hospital patient. I was getting concerned that he would need a place to stay for a night or two once discharged from the hospital and my studio apartment was already cramped with my two sons and me. Our patient’s partner was ready to come out from New York if necessary, but Dr. Gordon and I were hoping he’d be well enough to travel once discharged. Dale and his partner stepped in, mobilizing their friends to visit, help make travel arrangements, and give him a heartfelt send off to New York and a very bleak future.

By 1985, young men who had grown up in the county and long since gone off to San Francisco and Los Angeles were coming home. These men were professionals, in the 20s and 30s, who found freedom to be themselves in the larger cities. Now they were very sick and no longer able to work. They were coming home to die.

Families were not prepared. They weren’t prepared to care for their terminal “children”. They weren’t prepared to learn their son was gay. They also weren’t prepared for the other issues that were surfacing in their sons lives: sexual abuse by Catholic priests, alcohol and drug abuse, and scores of friends or partners who had already died. Once home, these young men were very isolated. They had no local support or friends and they were dying.

Dr. Gordon and I were suddenly thrown into managing dysfunctional family dynamics and destructive behavior patterns, while trying to manage infections and diseases not commonly seen and for which there were very limited medications. Plus, we were trying to enroll other health care providers and a mortuary to handle cremation services! Oh, and prepare a person who hadn’t even begun to think about death!

Coming home to die finally opened up conversations that had been waiting a lifetime to occur. More often than not, families were reconciled one to another and the person dying (we wouldn’t be talking about living with AIDS for a number of years yet) was being reconciled to himself. It was a very bittersweet time and we all cried and cried.

I’d like to invite you to join me September 18, 2011 for the C.A.R.E.S. AIDS Walk in Sacramento, California. There aren’t a lot of details up on the website yet, but if you email me, I’ll keep you posted!

30 Years

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My two small sons and I moved from Massachusetts back to California in September 1984. My grandmother was living in Atascadero, just north of San Luis Obispo. It’s such a pretty part of the state, not far from the coast, and I thought it would be wonderful living near my grandmother so she could enjoy her great-grandsons.

I knew it was somewhat rural, but had no idea it was so conservative. Needless to say my two half-breed children (they’re half Japanese) and their divorced, ordained mother were the talk of the school they were starting in. The community was pretty homogenous!

I quickly found a job as social worker/chaplain at the hospice in San Luis Obispo. The concept of hospice was still very new in the U.S. Elizabeth Kübler-Ross’ groundbreaking book, On Death and Dying, had only been out since 1969. This community non-profit began to educate the community about end-of-life care and bereavement, as well as provide in-home support and services for those dying.

We had a staff of three! The nurse and I recruited and trained volunteers, coordinated an interdisciplinary medical team meeting for clients, ran support groups, had an active case load ourselves, and fundraised!

Polite company did not talk about death. People were stunned that I had 10 families for my first Parents of Murdered Children bereavement group. The Psychology of Death class I taught at Cal Poly filled up quickly and the university decided to give me a bigger lecture hall. Atascadero State Hospital (a very scary place!) routinely had me in to train staff who knew how to deal with criminals, but not dying criminals.

It was November 1984. I had just finished a cancer support group, the office volunteer and just left for lunch when the phone rang. I answered. It was the doctor from the County Public Health department asking for me to meet him at 1:00 at the county hospital. He’d fill me in when I got there.

I was not prepared for what I was about to encounter. I arrived before the doctor (I would come to realize that Dr. Gordon was always behind schedule). I showed up at the appointed room. There was yellow hazard tape crisscrossing the doorway. There was a paper tray, with a paper plate of food and plastic utensils on the floor outside the room. There was a huge Do Not Enter/Isolation sign on the door.

As I was climbing under the caution tape, a nurse was yelling something about not going in there, only Dr. Gordon ever went in. I can handle a lot of gore; it’s usually the smell that gets to me. I just about passed out from the smell when I entered. There were dirty linens on the floor, the bedside commode had not been emptied, the emesis basin was full, and the door to the adjoining bathroom was locked! A very thin man with purplish spots on his arms and face was lying in the bed.

This poor guy was mortified that someone was seeing him like this. I was helping him get cleaned up when Dr. Gordon arrived. The man was vacationing on the Central Coast from New York city when he spiked a very high fever and had uncontrollable diarrhea. He presented in the emergency room with something no one had seen before.

That was my first experience with AIDS, although that wasn’t what it was commonly called yet.

June 5th marks the 30 year anniversary of HIV/AIDS. What was once a for-sure death sentence has now become a chronic illness. While young gay men were the first community primarily impacted, now everyone is impacted. A huge portion of one generation was annihilated by AIDS and another generation has come of age during HIV/AIDS. A lot has been learned, but it is not going away any time soon. I don’t know anyone who hasn’t lost a friend or family member to AIDS or who doesn’t have a friend or family member with HIV.

I spent 9 years on the front lines in those early years. I thought I’d share some of my experiences in various posts throughout the summer. I’ve mentioned this first encounter in a previous post. The New York Times had an excellent Opinion article, The Death Sentence That Defined My Life.

I’d also like to invite you to join me September 18, 2011 for the C.A.R.E.S. AIDS Walk in Sacramento, California. There aren’t a lot of details up on the website yet, but if you email me, I’ll keep you posted!

Beyond Barriers, Part 1

Who are our outcasts today? Who are those who are forgotten or cast aside? Who are those, because of their lifestyle or ethnic background or age or socio-economic status or belief systems are on the outside?

Back in the early 1980s I was the social worker for a community hospice. One day I received a call from a doctor asking me to visit a young man in his late twenties who was a patient in the county hospital. He asked if I could be at the hospital around 1:00 in the afternoon. It wasn’t unusual for me to receive calls from doctors, but they were always oncologists. Dr. Gordon was a county clinic doctor.

I showed up at the patient’s room. There was a tray of food: paper plates, paper cup, and plastic utensils on a paper tray…on the floor outside his room. A large “isolation” sign was posted on his closed door and hazard tapes was criss-crossed the doorway.

I picked up the tray of food and entered the room. It was obvious no one had been in to help him. There was dirty linen on the floor and the bedside commode had not been emptied. The door to the adjoining bathroom was locked.

He was surprised when I came into the room. No one but the doctor who called me had been in the room since he was admitted two days before. I had entered the world of GRID – Gay Related Immuno Disease – the term before AIDS. He was an outcast: infected with a deadly virus and now not even afforded the dignity of decent care; isolated because of fear of the disease; set apart, even from his family because he was gay. That was the beginning of a ten-year relationship with one group of outcasts.

There’s a very famous story in the Bible about a woman who is an outcast, very much like this young man. In terms of her lifestyle, her spiritual needs, and her emotional pain, this woman is as contemporary and relevant as anyone today. She is a lost, empty woman searching for love. Her story is rich in its implications for our own lives, and the lives of people we touch and talk to everyday. As Jesus reaches out to this woman, I am struck time after time with the issues of our own modern age – issues which include racial inequality, prejudice, the status of women in society, the decline of moral standards, human loneliness, and the hunger for love and acceptance.

Now when Jesus learned that the Pharisees had heard, “Jesus is making and baptizing more disciples than John” —although it was not Jesus himself but his disciples who baptized— he left Judea and started back to Galilee. But he had to go through Samaria. So he came to a Samaritan city called Sychar, near the plot of ground that Jacob had given to his son Joseph. Jacob’s well was there, and Jesus, tired out by his journey, was sitting by the well. It was about noon.

The Gospel writer, John, is calling our attention to three factors that set the stage for Jesus’ encounter with the woman with modern-day problems. Jesus left Judea to avoid a growing controversy. The Pharisees (religious leaders) were upset over the apparent rivalry between the baptism of Jesus and the baptism of John. They couldn’t understand it and they were choosing sides. A major conflict was brewing. Jesus wanted nothing to do with petty, legalistic controversies.

John also calls attention to the route Jesus took on his way to Galilee. He chose the most direct route, traveling through Samaria. Most Jews of Jesus’ time would take the long way around to go from Judea to Galilee, doubling the travel time. The reason most Jews chose the longer route was prejudice, pure and simple. For centuries, the Jews did not associate with Samaritans and would rather endure the hot, long, uncomfortable road than to let go of their bigotry.

Jesus chose the short-cut through Samaria, and in doing so, he also cut through the ignorant, narrow-minded prejudice of his day. He was actively demonstrating inclusiveness and unconditional acceptance.

Jesus stopped at an historical site called Jacob’s Well. It was about a half-mile from the town of Sychar. Jesus rested here while his friends went into town to find something to eat. I can’t help but think that Jesus’ open mindedness was already wearing off on his friends: prior to hanging out with Jesus, they would never have been caught dead in a Samaritan town!

As a Samaritan woman approaches the well to draw water, Jesus seizes the opportunity and initiates a conversation with her:

A Samaritan woman came to draw water, and Jesus said to her, “Give me a drink.” (His disciples had gone to the city to buy food.) The Samaritan woman said to him, “How is it that you, a Jew, ask a drink of me, a woman of Samaria?” (Jews do not share things in common with Samaritans.) Jesus answered her, “If you knew the gift of God, and who it is that is saying to you, ‘Give me a drink,’ you would have asked him, and he would have given you living water.”

Jesus came as a teacher, which is why those who approach him frequently call his “Rabbi”. According to Jewish law, rabbis were never to talk to a woman in public – even to their own wives or sisters! In fact, rabbinical law said, “It is better to burn the Law than to give it to a woman.” In that culture, women were regarded as totally unable and unworthy to receive and understand such lofty concepts as theology and religion. The status and regard for women in that culture was abysmally low.

The Jewish-Samaritan quarrel was more than 450 years old, but it smoldered as resentfully and bitterly as ever. Add to that this rabbi talking to a mere woman. No wonder the Samaritan woman was surprised when Jesus talked to her! He was shattering the barrier between men and women and the barrier dividing cultures.

Coming next: Beyond Barriers, Part 2