August 3, 2012 · 11:53 am

Obama Administration Participates in 2012 International AIDS Conference

Thursday, August 2, 2012

Good morning,

Last month, the 19th International AIDS Conference came to the U.S. for the first time since 1990 – thanks to bipartisan action by Presidents Obama and George W. Bush and the Congress to lift the ban on people living with HIV entering the United States.

While much work remains to be done, we all look forward to the day when there are no more panels to add to the quilt. Read more about the Obama Administration’s commitment to fighting the HIV/AIDS epidemic through the National HIV/AIDS Strategy.

Gautam Raghavan
Office of Public Engagement
The White House

Dr. Jill Biden views sections of the AIDS Memorial Quilt with Julie Rhoad, President and CEO of The NAMES Project Foundation, at The National Building Museum in Washington, D.C. July 25, 2012. (Official White House Photo by Chuck Kennedy)

Obama Administration Participates in 2012 International AIDS Conference

Throughout the week, senior Obama Administration Officials participated in the Conference, including Secretary of State Hillary Clinton, Senior Advisor to the President Valerie Jarrett, and Office of National AIDS Policy Director Grant Colfax. In addition, President Obama recorded a video message to the Conference attendees and the White House hosted a reception to honor people living with HIV and thank the men and women who have been fighting with dignity on the front lines against this disease.

Here at the White House, a section of the AIDS Quilt was displayed in the East Wing so that the hundreds of visitors that walk through the halls of the building each day can stop and remember the human toll that this disease has taken, and how far we’ve come as a country in the fight against HIV/AIDS.

And finally, a group of senior Administration officials – including Senior Advisor Valerie Jarrett and OPM Director John Berry – reflected upon the impact of HIV/AIDS in their own lives.

Watch Live: Third Annual Bullying Prevention Summit

Next week, the U.S. Department of Education’s Office of Safe and Healthy Students will host the Third Annual Bullying Prevention Summit in Washington, D.C., in conjunction with the departments of Justice, Health and Human Services, Defense, Agriculture, the Interior, the Federal Trade Commission, the White House Initiative on Asian Americans and Pacific Islanders, and the National Council on Disability.

The summit will focus on ensuring that anti-bullying efforts are coordinated and based on the best available research. Panels will highlight the connection between bullying and suicide, and ways to help students who bully others. Keynote speakers will include U.S. Secretary of Education Arne Duncan and the First Lady of Maryland Katie O’Malley.

Watch the entire event live, from 8:30 AM to 5:30 PM EDT on Monday, August 6 and Tuesday, August 7, at http://stopbullying.gov/live.

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Jill Biden Moved By AIDS Memorial Quilt (ontopmag.com)
AIDS Memorial Quilt in the White House (whitehouse.gov)
Video | President Barack Obama welcomes 2012 International AIDS Conference attendees (miamiherald.typepad.com)
President Obama welcomes 2012 International AIDS Conference Attendees (whitehouse.gov)
AIDS Memorial Quilt on display at White House (miamiherald.typepad.com)
The AIDS Quilt, and hoping for ‘The Last One’ (cnn.com)

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August 3, 2012 · 9:52 am

Gen-Silent in Fort Lauderdale

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July 24, 2012 · 8:30 am

On Borrowed Time?

I decided to try something different this evening with my blog post… I am using Dragon Naturally Speaking to post my blog this evening. I have come to the realization that I am much better at speaking than I am at typing: this just might be a better way for me to communicate my thoughts, feelings and emotions as I moved forward with ‘The Purple Jacket.” So far so good!

Jewish Halo

This past week, The Little One had his appointment with the oncologist. What was amazing about this appointment was that I did not feel the need, nor did I have the time to go to the appointment with him. Now the ‘Mother Hen’ in me worried all morning about the whereabouts of “The Little One” yet I knew deep down inside me that could handle the oncologist, handle the drive down to the office and be independent. He did not get to be 81 without some form of independence!

Just as is the primary care doctor was encouraged at his progress, so was the oncologist. It just so happens that the oncologist and the primary care doctor share the same office space; this convenient for sharing information between staff and doctors. The other benefit of this location in that the chemotherapy treatments is on the site, too! This setup has made easier, not only for “The Little One”, but for all the patients that these physicians see on a regular basis.

The oncologist continued to spread good cheer, good health and well-being for “The Little One.” As I mentioned in my last blog post, the oncologist had projected 3 or 4 months to live after the initial diagnosis and subsequent treatments. While he is pleased to be proven wrong, statistically speaking, the cure rate for esophageal cancer is one of the lowest there is. If we are going solely by the book, then 3 to 4 months is correct.

It is understandable why a diagnosis like this would be attached to such a short lifespan. That being said, we forged ahead mindful of the pitfalls, yet striving for the best possible results. We never want to rule out hope!

I guess what amazes me the most about this visit to the oncologist is not the fact that we all recognize that the little one has far exceeded anyone’s expectations; it’s why is the doctor felt like he has to end this positive visit with the words…”You know you’re on borrowed time!”

Photo Credit: Pinterest

Granted I was not there for this conversation, and I have no reason to doubt what “The Little One” has told me in regards to this conversation. Yet, I am not sure what the purpose of comments like this does for a patient, for a caregiver or for the physician themselves? Throughout this whole ordeal, we have taken a positive approach to dealing with the effects of cancer. We could sulked, we could have played the blame game, we could have gone into denial… However, what good would that have done for either one of us? That’s just like saying…”you know we’re on borrowed time.”

I do not claim to be a doctor, I do not claim to be a clinician, but I do believe that I understand how a positive outlook and healthy communication can have a soothing and healing effect on the mind, on the body, and of the spirit when dealing with critical health issues. When you think about it, we are all on borrowed time, yet does a cancer patient really need to be reminded of that?

Photo Credit: Pinterst

The healing power of body, mind and spirit plays such an important role in overcoming physical (and mental) illness. To use a sports metaphor, the best defense is usually a good offense. The best way to deal with a diagnosis of cancer is to be as realistic and honest as possible. Our best offense was to plunge full force When I look at this comment from the oncologist in this light, I can understand it. Yet to presuppose a diagnosis without the addition of hope, only leads us to despair. Reality is painful enough, more so without the effects of hope!

Sometimes Just Being There is all we need

Through this experience, I am convinced that one of the key tools in transmitting hope and reality, is the ability to be an empathetic communicator. Calmly… Empathy transmits hope and reality. I don’t think that there is anymore that we can ask for when dealing with the stark reality of Cancer or any other disabling illness.

You see…We Might Have Cancer…But Cancer Does Not Have Us!

Photo Credit: ‘The Bow-Tie-Guy”

Amazement! (thepurplejacket.com)
Does Your Oncologist Care About Your Quality of Life? (psychologytoday.com)
Cancer patients urged to exercise (standard.co.uk)

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Tagged as advocacy, advocate, Bow Tie Guy, Caregiver, Caregiving, Conditions and Diseases, esophagus cancer, Florida, Gay Seniors, Health, LGBT Seniors, oncology, Primary care physician, SunServe Social Service

July 24, 2012 · 1:34 am

Don’t Wait to Ask For Help

Conscious Departures

I’m a bit delinquent with this post. Last weekend I made the really bad decision to heat up a can of Indian food which had some white fuzz on top. I was so hungry I convinced myself that scraping off the fuzz would be fine. It wasn’t. Within a few hours I was slammed with a severe case of food poisoning and suffered through it till early the next morning. Now after several days I am almost fully recovered. The only help I managed to ask for during this ordeal was a cryptic email to a friend saying “check on me Tuesday and make sure I’m still alive”. Of course the person I chose only checks email when the comet Kohoutek rounds the sun, so thankfully I’m still here.

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July 17, 2012 · 8:05 am

Amazement!

Photo Credit: Pinterest

As we continue to move forward with his aftercare, there is amazement on every side of the aisle. Our last report from the primary care doctor was terrific. She, like everyone else involved in his care, is utterly amazed at the progress that ‘The Little One’ has made since this ordeal started almost a year ago. I have been reluctant to blog lately, because quite frankly, I am amazed (and quite busy) too.

When ‘The Little One’ was diagnosed with cancer in late July of 2011, we started six weeks’ worth of treatments almost immediately. The outcome looked bleak back then, and in fact the doctors gave us little hope for the future when the diagnosis came in. ‘Three maybe four months” said the oncologist back in September of 2011.

It was at that time I made the conscious decision to withhold that information from ‘The Little One’ while telling the doctor ‘let’s wait and see how he responds to treatments.’ I never shared that conversation with ‘The Little One’ until after our last appointment with his primary care doctor just a few weeks ago. (If we are doing the math, that last appointment was in June; I was told in August of 2011 that he had 3 to 4 months. We are almost to a year since the first treatments….) Of course, I consulted with the oncologist on the decision not to share this information with ‘The Little One’ , and he agreed. “Let see how the treatments go and let him live his life to the fullest!” He has exceeded all expectations, and now his doctors want to do a case study on him.

Photo Credit: Pinterest

To withhold this information is a difficult judgment call that caregivers, spouses, doctors have to make on a daily basis. I made this decision based on one simple fact. ‘The Little One’ knew that he had cancer, and he knew that it was serious; I also knew that he was going to do anything he possibly could to beat the diagnosis. Why train the mind to think something is going to happen, when we really do not know when is going to happen?

This week, ‘The Little One’ will visit his oncologist for a quarterly check-up. I am confident that the oncologist will be pleased and say again….”Bern, you look great,” which ‘The Little One will reply, “ Yes, I’ve got a new embalmer!” Laughter is the best medicine, even in its most trying times.

What is left of the tumor is dormant and for all intent and purposes, his cancer is in remission. From the first day, we have taken this day by day. What else is there to do? Every case is different. My decision to withhold this information from “The Little One” was not an easy decision to make. After revealing this decision to him, he was glad not to know… even though he did know.

Photo Credit: Pinterest

In a sad, but beautiful twist of fate, ‘The Little One’s lifelong friend Jill has recently been diagnosed with cancer. Like our first report, Jill’s first report has us all concerned. What is beautiful about this is how ‘The Little One’ is able to transfer his experience of this insidious disease to Jill… to encourage her, to console her, to simply be there for her. This gift of encouragement is one of the best gifts that one can give to a friend.

We send out a big hug and hello to our friend Doug in STL who is going through treatments at this time. We are thinking of you Doug!

Remember…We might have cancer…But cancer does not have us.

Photo Credit: The Purple Jacket

As you have noticed, we have taken a break from Blogging on ‘The Purple Jacket’ for the past few weeks. As I transition into a new job and into a new academic program at Gonzaga University, “The Purple Jacket” will be taking on a new look too. We will continue to provide you updates on ‘The Little One’ as this blog is really dedicated to him. Yet in future weeks, we will expand the content of the blog to discuss the effects of Caregiving on the caregiver. What is often overlooked in Caregiving is the importance of the health of the caregiver. Personally, I have had to take a long hard look at this issue, and have come to the conclusion that the best way to deal with this issue is to blog about it. In essence, there is a real purple jacket. I just can’t fit into it any longer. We have to explore the issue of what it means to be a healthy caregiver!

Photo Credit: Caregiving.com

I am BIG fan of Caregiving.com The community on Caregiving.com is just tremendous and Denise Brown who is the proprietor of this wonderful website, is an expert in the field of Caregiving. You want to be sure to check out Caregiving.com and become a part of the Caregiving family too! Follow Denise on Twitter @caregiving and on Blog Talk Radio, too!

WE will also be exploring a new communication theory entitled ‘The Theory of Empathic Communication” in an upcoming blog posts, as well as our Phone A Friend program at SunServe Social Services. We will also be chatting about a great program at the Pride Center in Fort Lauderdale, Coffee & Conversation which takes place every Tuesday morning at 11:00 am in Wilton Manors, Florida. I will also have some speaking engagements to announce in August and September. Coming soon, ‘The Bow-Tie-Guy’ on Blog Talk Radio!

Photo Credit: The Bow-Tie-Guy

A Guide for the Cancer Caregiver (everydayhealth.com)
Choose your oncologist… (lunder740.wordpress.com)

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July 2, 2012 · 9:57 am

On Being Drama-Free

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June 30, 2012 · 9:23 am

Blog Talk Radio 10:00am EST LGBT Caregiving

Join me this morning at 10:00 am EST on Blog Talk Radio, host be Denise Brown as we discuss LGBT Caregiving

http://www.blogtalkradio.com/caregiving/2012/06/30/table-talk-chris#.T-75DBSGmaQ.email

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June 26, 2012 · 9:14 am

Great blog post for all of us to read!

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June 20, 2012 · 8:30 am

A Night with ‘Harriet Craig’

This past weekend, we took the opportunity to motor to Mount Dora, Florida. Funny how the last two weekends have developed for us; two weekends ago we were on the verge of heading to the hospital, this past weekend, we are traveling to Mount Dora. It is difficult to know just what to expect when you are dealing with cancer.

Photo Credit: The Bow-Tie-Guy

Why Mount Dora, Florida you ask? Going back to their days in Manhattan, ‘The Little One’ has a friend of 60+ years living in Mount Dora. Mount Dora is a little town just north of Orlando, known for its quaint antique shops. It is a beautiful town and surprisingly, has plenty of things to do. But this was not a weekend for tourism, this was a weekend of storytelling and laughter!

With over 60 years of friendship behind them, the conversation was unrestrained. Names from the past, (celebrities to boot!) stories that never ended. To them, yesterday was today and tomorrow will come: it was a beautiful experience. Finally the name…’Harriet Craig’ was blurted out and the laughter got more pronounced. Harriet Craig was a nickname given to ‘The Little Ones’ friend years ago because of his constant need to clean the apartment he shared in Manhattan with his partner of over 40 years. Apparently, ‘Harriet’ just could not stand a dirty ashtray, one flick of the ash and up Harriet would go to clean the tray; always in constant motion, always on top of the conversation. Once I learned why Harriet Craig, I understood the connection to the character in the movie as the villa was in impeccable condition! As we moved on to dinner, it was easy to see who was in charge…Harriet Craig!

Photo Credit: Wikipedia

Harriet Craig is a 1950 movie played by the legendary Joan Crawford. The movie credits go like this… ‘Domineering Harriet Craig holds more regard for her home and its possessions than she does for any person in her life. Neurotic perfectionist Harriet Craig (Crawford) makes life miserable for everyone around her.’ While the description of the character in the movie does not accurately depict ‘The Little Ones’ friend, the metaphor is there in order to create the ‘sting.’

I was told that I was not old enough and privileged enough to call him ‘Harriet Craig!’

Their stories sounded quite familiar to that what you would hear today. If you are a ‘Sister’ you know what I mean. Long standing friends reminiscing about their past, grateful for their partners, their friendship and their freedom to be who they are. Gay Marriage, Equal Rights and the sorts, all talked about in their day, just not in the volume that we hear today.

Yet…Who Are They?

They are two close friends, in separate (gay) relationships, lasting over 40 years each, which is quite the accomplishment, no matter what side of the fence you are on! Yet these accomplishments often go unnoticed in our society as we here more about what’s wrong with gay relationships than what’s right about gay relationships. They are your uncles, cousins, they are your friends…

Who Are They?

Photo Credit: Unknown

They are your neighbor right next door. We have all heard the phrase…’home is where the heart is.’ That phrase applies to everyone’s home, not just a selected few.

Our friend in Mount Dora is just a few years older than ‘The Little One’, leads an active life, accepted by his cohorts, active in his neighborhood, has dinner with his neighbors and volunteers at hospice. He is your neighbor.

Who Are They?

Stonewall Inn 1969 Photo Credit Diane Davies

They are two men who lived not only during the time of the Stonewall Riots, they lived in the mist of the Stonewall Riots where friends of them were killed just for being who they are. The riots inspired LGBT people throughout the country to organize in support of gay rights, and within two years after the riots, gay rights groups had been started in nearly every major city in the United States. They are your pioneers…

This weekend, when you see all the stores on the news about Gay Pride weekend, remember those Gay Seniors who live alone and cannot get to the parade. Remember those Gay Seniors who still live in fear; Remember those gay seniors who lived and worked in the trenches in order to bring LGBT equality issues of today to the forefront.

And finally, remember the thousand upon thousand of Gay Seniors who have lived their life in committed and long lasting relationships only to be denied their equal rights.

Who Are They?

They are your American Seniors, who just happen to be Gay.