Wednesday, April 27, 2011

“Forming Community” – AIDS@30

The current issue of Chicago’s gay weekly, Windy City Times, includes a guest column I wrote, “Forming Community”.
As part of their 9-month “AIDS@30” series, I reflected on my time as a fundraiser in the AIDS community, and what it was like to be a straight woman in a mostly gay environment.
You’ll want to bookmark this website, http://www.windycitymediagroup.com/aids.php to read the entire series. If you are of a certain age, you’ll remember a lot. If not, well, you might learn a valuable history lesson or two.
                                                                                            

Monday, April 25, 2011

AIDS@30

This month, Windy City Times started a 9-month series on AIDS@30, in conjunction with the AIDS Foundation of Chicago.
The series began with a timeline that will jog your memory if you’re of a certain age, and surprise you if you aren’t.
I found myself reading it, thinking to myself, “I forgot about that” or “I remember him.”
You’ll find statistics, photos and remembrances. It has already brought back a lot of memories for me.
Publisher Tracy Baim was nice enough to ask me to contribute to the series, and I will post when that guest column appears.
Visit the Windy City Times website, www.windycitymediagroup.com, and click on “AIDS@30”.
The AIDS epidemic is 30 years old, and sadly, not over yet. Through this series, you’ll learn a little about how and why, and more about the people on the front lines: working for effective treatment and prevention, and someday, a cure.

Wednesday, April 20, 2011

What Kind of Griever Are You? - Part 2

Everyone grieves differently.
Often, people assume that someone who cries or talks about the person who has died is not handling their grief well. They are encouraged to stop crying, to not dwell on the past. But for that person, that’s how they express their grief. 
Others are what may be defined as “instrumental” grievers.
Rather than express their grief by crying, they are more likely to intellectualize their grief.
They want to understand their grief, but they don’t want to talk about it.
They want to control their grief, so it doesn’t overwhelm them, or surprise them, or distract them.
They may also want to ‘do’ things. They may show up with food for the family, or run errands for them. They channel their grief into unemotional actions.
Just as emotional grievers are criticized, instrumental grievers also face disapproval. They may be considered cold or uncaring, because they don’t cry in public.
The ability to not cry doesn’t reflect a lack of caring. It’s just the way some people cope.
So if you see someone who has lost a close friend but acts as if they’re fine, don’t assume they’re in denial. Consider the possibility that they just grieve differently
And be kind.

Monday, April 18, 2011

Online Resources: Dying Matters

Despite all the hysteria about ‘death panels’, there is a critical need for each and every one of us to thoughtfully consider end-of-life plans. It’s an uncomfortable subject for most people. But avoiding the subjects of where we want to spend our final days and how, what kind of services we want held, and how we want to be remembered will not make them go away.
Dying Matters is a UK-based nonprofit coalition. This is from their website:
“In 2009 the National Council for Palliative Care (NCPC) set up the Dying Matters Coalition to promote public awareness of dying, death and bereavement. Our members include organisations from across the NHS, voluntary and independent  health and care sectors (including hospices, care homes, charities supporting old people, children and bereavement); social care and housing sectors;  a wide range of faith organisations; community organisations; schools and colleges; academic bodies; trade unions; the legal profession and the funeral sector.

The Coalition’s Mission is “to support changing knowledge, attitudes and behaviours towards death, dying and bereavement, and through this to make ‘living and dying well’ the norm". This will involve a fundamental change in society in which dying, death and bereavement will be seen and accepted as the natural part of everybody’s life cycle.

Changes in the way society views dying and death have impacted on the experience of people who are dying and bereaved. Our lack of openness has affected the quality and range of support and care services available to patients and families. It has also affected our ability to die where or how we would wish.

The Dying Matters Coalition is working to address this by encouraging people to talk about their wishes towards the end of their lives, including where they want to die and their funeral plans with friends, family and loved ones.”

May 16-22 is “Dying Matters Awareness Week”. On their website, www.dyingmatters.org, you will find materials and resources for helping make those important decisions: for yourself, your family and even your friends.

Pledge to never again say “I didn’t know what they wanted.”

Friday, April 15, 2011

The Melody of Friendship

When I read Viki’s post, “Do You Need Any Help?”, I immediately thought of my best friend, Judy, who died of breast cancer in 1993 after a five year battle. Viki invited me to do a guest post on what it is like to lose a dear friend. Let me tell you about Judy…
Where do I begin to describe a friendship of twenty years; a friendship that endured life’s many tough lessons and trials? The diagnosis of cancer, the rigors of single parenting, the challenges of living in a fast-paced world were all intertwined throughout this friendship. We clung to each other through the maze of self-discoveries, growth, career changes, family milestones, achievements and failures.
I didn’t realize I would be meeting my best friend, that day in 1973 when we literally bumped into each other  in that cramped little coat room in the emergency department of a local hospital where we both worked as staff nurses. We started joking then and we never stopped. Our families would roll their eyes and groan whenever we got together for they knew the rest of the world would be on hold until we were done talking.
Time after time, crisis after crisis, move after move, Judy was a constant in my life, when everything else seemed to be in shambles.
On August 19, 1993, I said goodbye to Judy as she lay dying in the hospital. Her blue eyes opened wide, and recognized me. I felt so angry and helpless, yet so blessed to have been at her side at that moment. I screamed to myself,
Why, Judy, did this have to happen?
How dare you leave me just as I’m about to go through menopause?
It hurts so much to see you suffer and to know this is so close to the end.
The feelings overwhelmed me and I started to cry, “I’m going to miss you so much.”
As I laid my head on her pillow, she reached out to pat my back.
“Your friendship has meant a lot to me, Kathy.” She didn’t have the strength to cry.
On September 13,1993, while on a nature challenge with the nursing students I was teaching to mark the beginning of a new semester, I climbed a tree and did some rope-climbing for Judy. The students gave me a jelly-roll hug where forty warm, young bodies held hands and wrapped themselves around me. Judy died peacefully that evening. A crystal clear, sunny, crisp fall day marked the ending of a beautiful life and a treasured friendship.
The treasured friend who blessed my life for twenty years has now been gone for nearly eighteen years. I am continually reminded that her spirit is very much alive in my heart whenever I think of her. It is the melody of friendship that plays over and over to nurture my soul.

Kathleen Pooler is a Family Nurse Practitioner and writer from eastern New York, at the foothills of the Adirondack Mountains along the New York State Thruway. She is currently working on a memoir about the power of hope through her faith in God. It traces the extraordinary events of her life: two abusive marriages, divorces, single-parenting, raising an alcoholic son, cancer, heart failure, all leading to a life of peace and joy.
Check out her writer’s blog, Write On, Random Thoughts on Writing and Life  at http://krpooler.wordpress.com. She can be reached on twitter: @kathypooler , on Facebook: Kathleen Pooler and email: kpooler63@gmail.com.

Thursday, April 14, 2011

What Kind of Griever Are You? – Part 1

There is no one way to grieve.
There is no right way to grieve.
Everyone experiences grief in different ways.
Some people let themselves grieve in a physical way. Some clinicians refer to them as “intuitive” grievers. Another word for this type of griever could be “emotional”. Their grief is on display, not held back.
Intuitive grievers express feelings that are intense. Crying is probably the most common expression, and it mirrors how they are feeling.
Typically, in our culture, expressing grief in this way is considered a female response, rather than male. That also can imply weakness.
Crying is not the only physical manifestation of grief for an emotional griever. They may experience prolonged periods of confusion, inability to concentrate, disorganization, and disorientation. Their physical exhaustion and anxiety may be obvious.
This description may fit you, or someone you know. If it does, rest assured that you are not alone.
Well-meaning others may try to force you to stop expressing yourself this way. Let yourself grieve at your own pace. It’s healthy and right for you.
We’ll consider other grieving styles in future posts.



Monday, April 11, 2011

9/11 - When the Therapists Needed Therapists


"Firefighter Pew" at St. Paul's Chapel, near Ground Zero

Karen M. Seeley’s book, Therapy after Terror:  9/11, Psychotherapists, and Mental Health,
(Cambridge, UK:  Cambridge University Press, 2008) explores a relatively invisible group of September 11 survivors: therapists.

New York City was overwhelmed by the need for mental health professionals to help survivors and witnesses cope with the horror of the attacks. To their credit, many came forward in the city as well as from other parts of the country.  But helping those who grieve after a terror attack presented challenges never before considered.

Most of the therapists were “outsiders”. Firefighters, already a tight-knit, closed society, were unwilling to talk to anyone outside of the department (assuming they talked at all). Unless you were one of them, you didn’t ‘get it’. There was no way they were taking time off to grieve, when their department had been decimated and needed them.

Survivors, who may have lost dozens of co-workers and friends, didn’t know what to do with their grief. They attended memorial services, but without a body to see, had a hard time accepting that a death had occurred. Their grief was delayed, extended, and a source of chronic physical and emotional strain. But in the meantime, they had to pick up the slack at work, making up for the loss of co-workers. For many, the real grieving didn’t begin for a year or more.

Forgotten in all of this were the therapists who tried to help. Few were prepared for the complex issues they faced. Few were prepared to sit in their office, and listen to their patients recount stories of absolute horror…multiple times a day…day after day after day. If it’s true that ‘no good deed goes unpunished’, this is a great example.

You didn’t have to work in the World Trade Center or Pentagon to be a survivor, to be directly affected by what happened on that clear, blue Tuesday morning. If you or someone you know survived, be gentle. The upcoming 10th annniversary is bound to reopen those wounds.

Wednesday, April 6, 2011

F is for Friends We Grieve


You would probably be surprised by the number of friends you’ve had in your life: friends from your neighborhood, your school, your church, your first job, your sports team, your theatre group.
But life being what it is, you lose touch, maybe geographically separated, maybe just slipping away because your interests changed.
Then you go to a reunion, or a party. You skim the alumni newsletter. And you discover they’ve died.
Your first reaction may be shock, but your second reaction is likely to be a memory. It might be a memory that now seemed eerie. It might also be a silly or funny memory.
My husband and I sat in Holy Name Cathedral in Chicago, three days after 9/11, for an inter-faith service. Just minutes before walking in, I’d found out a classmate from high school was in the South Tower, and missing. By then, we knew that meant she was dead.
As I sat there during the beautiful service, trying unsuccessfully to not cry, a thought kept popping into my mind. We’d gone to an all-girls high school, and one of the things that passed for entertainment in those days was a Hairy Legs Contest (those who didn’t have boyfriends had the best chance of winning).
I was mortified. Could there have been a more inappropriate thought at that moment?
A month later, I was having dinner with a group of my classmates, as we discussed a class gift in Carol’s memory. There, in the safety of friends, I admitted my sacrilegious thoughts. Don’t you remember, one of the women said to me, Carol won the contest.
That may qualify as eerie and silly. But I share it to assure you that these kinds of thoughts are not unusual. At a moment when all around you are crying, and you think you should, too, it’s all right to have a happy memory of your friend who died.
Because in the end, the happy memories are the ones we want others to have of us, too.

Monday, April 4, 2011

D is for “Disenfranchised”

I’m on an A to Z blog challenge, and today is the 4th day of the challenge. That explains the pithy title. ;)
I didn’t know when I decided to write my book that there was such a thing as “disenfranchised grief”, coined by Dr. Kenneth Doka of the College of New Rochelle, in 1989. In the 2002 revision of his Disenfranchised Grief: Recognizing Hidden Sorrow, Dr. Doka observes how the grief a friend experiences can be dismissed:
“Often there is no recognized role in which mourners can assert the right to mourn and thus receive such support.  Grief may have to remain private.  Though they may have experienced an intense loss, they may not be given time off from work, have the opportunity to verbalize the loss, or receive the expressions of sympathy and support characteristic in a death.”
Sometimes the disrespect is intentional, sometimes not. But you’ve probably experienced the following situation:
“The role of the friend or similarly close relationship may simply be ignored – unrecognized or unacknowledged.  Such persons may attend the funeral.  They may even be expected to be there out of respect for the deceased and in support of the family.  But they remain passive participants, their own need to mourn overlooked.”
So, if it makes you feel better, there is a reason your grief felt compounded by the lack of respect you experienced. Grieving a friend is not acknowledged in the same way as grieving a family member.
It’s up to all of us to let those around us know the importance of our friendships and the depth of our grief. Then and only then will grieving a friend receive the respect it deserves.

Friday, April 1, 2011

"Longtime Companion"

For many people – certainly anyone under 40 – it feels like AIDS has been around forever. With the spread of the disease around the world, the media focus has actually dimmed. Rarely do you hear of celebrities dying of AIDS. With the development of the so-called AIDS “cocktail” of drugs, those infected can live much longer, healthier lives than anyone could’ve predicted 30 years ago.
On July 3, 1981, a story appeared in the New York Times on Kaposi’s Sarcoma, a rare cancer affecting gay men. It is on that day that the film Longtime Companion opens.
The first feature-length film addressing the AIDS epidemic, Longtime Companion follows a group of friends through the 80’s. We see the denial, the ignorance, the fear, the randomness of infection, through the eyes of people who were most affected. The grief at times is overwhelming.
The story is told through a series of vignettes, alternating between New York City and Fire Island, as the group of friends slowly grows smaller. We learn the various names given to the puzzling and frightening afflictions: gay cancer, gay plague, and the official “Gay Related Immune Disorder”, or GRID.
It is a painful film to watch, but the deathbed scene where Bruce Davison urges his partner, Mark Lamos, to let go, was certainly what earned him an Academy Award nomination. It’s worth renting it just for those few minutes.
The title of the film, to those not old enough to remember, may seem odd. But at the time, most newspapers refused to acknowledge same-sex relationships in obituaries. The venerable New York Times referred to the surviving partner as a “longtime companion.”
There are several excellent films that address AIDS: Philadelphia, And the Band Played On, Peter’s Friends, At Home at the End of the World. We’ll look at all of them and others over the coming months, as we commemorate 30 year of AIDS.