Let It Go! Let It Go!

This post was written by BLC Guest Blogger, Rob Quinn

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Welcome Spring; a time of renewal. The season of new growth and the signs of change are all around us. This is a perfect time to pause, reassess your life, and make changes that are more appropriate and satisfactory for where you are right now. Stuff has a way of creeping into our life, and before you know it, it starts to take over.

As a long-term survivor not only living with HIV/AIDS but also thriving, I choose living a minimalist life of decluttered simplicity. For me, clutter affects my ability to focus, process information, and be productive. A happier, freer, more peaceful life promotes optimal health outcomes. Now that Spring has sprung, it’s time for Spring cleaning. Time for taking action to clear more space–physically, emotionally and spiritually.

Decluttering is a lifelong practice, one that we can repeat when needed. Decluttering, simplifying, simple living, minimalism–whatever you wish to call it–has health benefits. Clearing clutter provides me more clarity and focus. Less is more equals less physical and emotional stress. Opening up space affords me an opportunity to reach my full potential and thrive in a meaningful, productive, independent, and connected life.

There are countless online resources, self-help books and more on decluttering. Decluttering in four steps, five steps, ten steps, forty steps and more. However, living a minimalist life, I find that keeping decluttering simplified leads to successful outcomes. I ask myself a few basic questions, “What’s cluttering my life, why am I keeping it, and what parts of my life seem out of control? Is this stuff bringing me closer to my goal of optimal health and happiness or further away?” If the answer is the latter, then as Elsa says, “Let it go, let it go!”

Prior to March 9, 2016, at the end of each day I would ask myself, “Why I am up at night, tossing and turning, my mind racing?” Maybe it’s aging, wisdom, having had an implantable cardioverter defibrillator performed on March 9, 2016 due to HIV-associated cardiomyopathy, or a combination thereof, but today I have zero tolerance for any negative energy in my life. Person, place or thing. In the past, I can assure you that the source of my sleeplessness was most likely getting a restful night’s sleep, not being awake thinking of myself. Now, cue Elsa, “Let it go, let it go!”

At the end of the day, the only person I can be accountable for is me. Now each morning I ask myself, “What stuff deserves my time, my focus and my attention?” The answer, “The stuff that I am responsible for, can control, and can do something about.” And NOT the stuff that I am not responsible for, don’t control, or can do very little about.

Note to self: Remember, today is your day to let go of stuff that no longer serves you. Let it go, let it go!

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“We are human too!”

This post was written by our BLC intern, Anita Peete.

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I had the pleasure of sitting down to talk with one of the Boston Living Center’s longtime members. This member did not want their identity to be disclosed, but as you read the conversation you will see that they had a lot to say. For privacy purposes, their name and any other identifying information has not been used.

How long have you been positive?

“I was diagnosed Jan. 8th 1992. So that makes it 14 years.”

What was your reaction?

“I wasn’t surprised or shocked. I was scared for one thing. I was dating someone and I didn’t want to tell him. I cried like a baby when I was told because I was hurt.”

What motivated you to keep living after your diagnosis?

“My family.”

How did your family react to the news?

“My family was very accepting and understanding.”

Do you remember the first person you told?

“Yes. The guy I was dating.”

You have been living with this virus for 14 years, what keeps you going?

“God’s blessings. This is my second chance at life. Being a recovering addict and also being diagnosed with HIV, how is that for a hell of a combination? Life itself [keeps me going].”

What are you hopeful for yourself as well as for the future of the virus?

“I just plan to keep on living. I thank God for every day that I am still alive. I hope I can live to see a change when it comes to HIV being so stigmatized. We get looked at like we are a walking disease. They don’t twist cancer or any other disease. But as soon as you mention HIV you are looked at crazy.”

What are some words that you want to leave with those who read this?

“Understand that we are people too. We have feelings just like you do. Don’t look at us any less than you would anyone else. We are human too!”

**Anita’s note**: There are a lot of people that do not experience the support and love of family members like the member interviewed here. I am hopeful that one day families and friends will obtain the necessary knowledge so that they can fully support their loved one that is positive. As a community, it is our job to continue to speak up and speak out on behalf of those who are positive. We must educate those who do not know, so that they do know. Education is key!

A Final Word From Tia

Did you know that African Americans have been estimated to have 44% of all new HIV infections? Men in general have been estimated to have 70% of all new infections. For some reason, these numbers did not surprise me – they instead made me think of questions such as: why is the black community at higher risk of getting infected? Is it based on our history?

The first day I arrived to BLC, Morrigan, the program director, sat me down in a room with paper, packets, and articles on HIV. She wanted to make sure I understood and was familiar with HIV and how it is impacting our community. A lot of the articles I read were survey based and showed the same conclusions.

African American male youth age 13 -24 was estimated to have over 5000 new HIV infections, the highest amount on the bar graph in the article I read. Hispanic / Latino and white males followed behind them with about 2,000 new infections, less than half of an African American male. Then came the woman; although African American females had only one forth new infections compared to an African American man, when compared to females of other races their number was about five times more.

The fact that African Americans are leading with the highest new HIV infection relates back to history because HIV is not the only thing that affects people of color. They have to deal with things such as: high rates of poverty, stereotypes, and lack of access to resources. African Americans have been on the bottom of the socioeconomic ladder for years, starting with slavery. That was a time when they were not only dehumanized but had to step up and prove their worth. Racism and negative stereotypes arose and have followed them for centuries. Also for some people of color trying to access resources for HIV can be problematic, especially if they are either homeless, ashamed of their sexuality, or uneducated on the virus.

After reading the articles those thoughts were my take aways; however, I wonder what others’ initial thoughts were as well. Why do you think African Americans are leading with the highest new HIV infection rate? Is it based on history ? How can the community and organizations such at the BLC contribute? These are questions we need to answer and discuss in order to bring awareness and help lower the HIV infection rate for people of color.

 

ALL THAT “JAZZZ”

This post was written by our BSW Intern, Anita Peete

“Not to fear it. Try to understand it. Accept that it is among us. The best way to fight it is to come together.”

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While here at the Boston Living Center, one of my main goals is to get to know members on a collective level; but even more on a personal basis. In order to fulfill this goal I sat down with a member of the Living Center named Jazzz. It was a pleasure to have the opportunity to get to know Mr. Jazzz, with an extra “Z”!

Jazzz is originally from Lewiston, Maine. He lived there until the age of 19. Jazzz has been a member of the Boston Living Center for the past 4 years. Although at first he wasn’t interested in coming to the Center, even after knowing so much about it; he came to the realization that it was “difficult to maintain the day to day routine.” He needed the support of those who fully understood what it means to live with this virus. No one understood what he was going through, so he came to the Center in order “to be in touch with the community. Those who were living with HIV.” Other ways that Jazzz works to maintain his life on a daily basis is through various hobbies. His hobbies include writing poetry and short stories, painting, being a member of the acting group. He also loves traveling, especially international travel. He has been to 5 different continents in his lifetime. He even had the opportunity to study in Mexico.

Just like the music, there are many levels to the person that is Jazzz. I discovered that he recently retired from teaching in the Boston Public Schools after teaching for 27 years. He taught everything from general education to Bilingual education. Yes! Bilingual education! Jazzz is fluent in Spanish! His best advice when learning Spanish is that you go to a Spanish speaking country and immerse yourself in the culture to learn the language.

Jazzz is a very vibrant and well-rounded individual. It was a pure joy to be able to sit down and get to know the wonderful soul that is Jazzz, with an extra “Z”! In closing, I asked Jazzz what he wants the world to know about HIV and those who live with it. His response was “Not to fear it. Try to understand it. Accept that it is among us. The best way to fight it is to come together.” Americans as a society has been known to come together in order to fight injustices, so it is important that we continue our fight against HIV, so that we can get to zero! It is because of the brave men and women, Like Jazzz, who share their stories that others are able to start to tear down the walls of stigma.

 

 

Living with HIV/AIDS: What Can I Be Thankful For?

This post was written by BLC guest blogger Rob Quinn

The holidays are here and in New England the colorful leaves of fall release their hold on tall tree branches and float easily to the ground. Temperatures continue to dip. This can be a tricky time of year to navigate for so many reasons, so, to experience the holidays with minimal stress, it’s important for me to feel a deep sense of thankfulness for all of my blessings.

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I can hardly believe it’s been twenty-two years since my HIV diagnosis. The news that I was HIV positive was delivered just days before Thanksgiving 1993. That year the Centers for Disease Control and Prevention estimated that newly diagnosed individuals would have a seven-year life expectancy. Although the journey has not been easy, and often grueling at times, today I celebrate life, peace, health, happiness, support, and simple living as I gratefully age fairly healthy with HIV/AIDS – sometimes struggling, sometimes succeeding.

An HIV-positive diagnosis can be a shocking emotional experience. Living with HIV can feel overwhelming and incredibly isolating. But, we are far from alone. Countless people and resources are available to help those of us during the holiday season and throughout the year. Each year I make a “gratitude list” as a way to focus on the positive in my life.

As a long-term survivor living and thriving with HIV/AIDS, I am grateful for many things, including surviving long enough to have gray hair, or as I refer to it, my “wisdom highlights.” The top five HIV-related things I am thankful for this holiday season are:

  1. HIV Care Is Better Than Ever

In the United States, and specifically in Massachusetts, high quality HIV/AIDS treatment, care (i.e., oral health) and support services (i.e., affordable housing) are more accessible than ever. We have a wide variety of providers to chose from, medication options, and complementary therapies (i.e., yoga, massage, acupuncture) that can be used to enhance our quality of life. With proper antiretroviral therapy (ART) and support, people like me can stay healthy, live longer, and significantly reduce the risk of transmitting HIV to others.

I am the expert on me! I am the most important member of my health care team and my own best advocate. My health care team members (a.k.a. coaches) and I work in partnership, striving for optimal health by talking openly and honestly about my concerns, asking questions of one another and then developing an ongoing personal health plan that’s right for me. I personally select experts who advise me about all my options and then the final decision is up to me. As my cousin Sarah once told me, “You are the captain of your ship, Robert, and ultimately it comes down to you when you experience such progress. Remember that!”

  1. I Am a Success, Not a Failure

All of us encounter difficult challenges in our life. HIV is something I never expected to happen. Both the challenges and triumphs have formed me and made me stronger. I truly believe that we can all overcome and grow from life’s obstacles when we learn to see them differently.

  1. All of Us Write Our Own Stories

I don’t live with HIV, HIV lives with me. Yes, I am HIV-positive. But, first and foremost, I am Rob. My HIV status, much like my gender, age or sexual orientation, does not define who I am, but it is part of my life and part of what made me who I am today—Optimistic, Confident and Determined! I am the person that I am today because of HIV, and I would not change a single moment, risking all that I have gained.

  1. My Health Is My Priority

My health and happiness are my greatest assets and highest priorities. Living with HIV, I am more conscious of how I am treating myself as a whole—mind, body and spirit. That’s important.

  1. There is Support Everywhere

Although at the time of my HIV diagnosis I had no idea how, when, or to whom to disclose, I knew one thing for certain: I could not continue on this journey alone. People living with HIV are part of a community that is compassionate, supportive, and kind. In addition to my trusted support, a wide range of people are available to provide me with emotional support – peers, trained professionals and other people with a sympathetic ear.

Gratitude is something that doesn’t just benefit us people living with HIV – it has uplifting and healing properties for everyone. And a little bit goes a long way. What do you feel grateful for even when you might be going through a tough day or time? I challenge you, for you, to complete the sentence: “I am grateful for…because…”

However you choose to celebrate this time of year, my wish to you and those you hold close in your heart is a safe, happy and healthy holiday season.

The Power of Support

This entry was written by our BSW intern, Anita Peete

For good ideas and true innovation, you need human interaction, conflict, argument, debate.

-Margaret Heffernan

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The Boston Living Center is a place of comfort and support for so many people. The Center holds so much value to those who utilize the many services provided here. This is the one place that many of the members are able to find a sense of peace, hope, happiness, or joy. This past month that I’ve spent at the Boston Living Center has caused me to re-examine what life is all about: enjoying the many moments we experience with others.

The members come to the Boston Living Center because they are in need of support around situations that are occurring in their lives such as homelessness, medication adherence, relationship issues and other various pressures, but it is through groups like Bridges, G.L.E.M (Grupo de Latinos en Movimiento), meals, pottery class, beading class and so much more that for that moment the pressures of life do not exist. There is so much that impacts an individual that is HIV positive. This includes stigma, discrimination (although we want to believe it doesn’t happen anymore), the inability to work because of their illness. All of these situations have a major impact on how an individual who is positive views life, but when you have a place of support such as the Boston Living Center you are more likely to progress in a positive manner. Research shows that support groups and a strong support network helps individuals thrive. You are in a group with other people who are going through similar situations, and this is very important when it comes to those who are living with HIV. When someone is diagnosed with HIV, they may begin to isolate themselves or be ostracized by others.

I have witnessed this on many occasions, especially attending Bridges. While in Bridges, I have noticed the weight that is lifted off of so many members as they share and receive feedback from their peers on their struggles. It is moments like this that I am forced to enjoy. The overwhelming feeling of community here at the Boston Living Center is great to witness. There have been many times when I have seen small gestures of help being given, such as a member needing help carrying their take out downstairs and another member is quick to assist them.

Our daily interactions with others are vital to our continuous growth as humans. The strengths perspective is a theory that all individuals have something that is positive on the inside or around that can be used as motivation. A strong support is often an overlooked strength for individuals. The Boston Living Center is a part of many individuals support system.

There is power in our interactions that cause us to feel hopeful, appreciated, grateful or thankful. We are motivated to succeed when we see others succeeding. We are saddened by that which saddens a peer. We feel what others feel when we care for them. It is important for all of us to remember that we are not in this alone. We have each other and it is important that we utilize others when necessary. Marianne Williamson stated it best in her well-known poem entitled “Our Deepest Fear” when she stated the following:

As we let our own light shine,
we consciously give other people permission to do the same.
As we are liberated from our own fear,
our presence automatically liberates others.”

So continue to let your light shine and consciously give others the permission to do the same. It is through our interactions with others that we will liberate ourselves from our fears and our presence will automatically liberate others. I challenge you to take the time after you read this to get to know someone new. You just might be the light that they need!

Community Engagement: Beyond the Consumer Advisory Board 

Rob Quinn is a guest blogger and member on the Statewide Consumer Advisory Board at the Massachusetts Department of Public Health, Office of HIV/AIDS.

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Two years after the first AIDS cases were reported in the U.S. in 1981, a group of men and women, most of them diagnosed with AIDS, gathered in Denver to demand greater involvement in the crucial decisions that were affecting their lives. They developed The Denver Principles, the cornerstone of the people with AIDS (PWA) self-empowerment movement.

From its origins in early HIV treatment activism in the 1980’s, the need for community engagement has attracted increased attention in recent years. This is largely due to the highly vocal demands of HIV activists, the recognition that inclusion and transparency are ethical responsibilities, and the fact that experience has shown that people living with HIV/AIDS (PLWHA), like me, provide a critical and necessary perspective on the development, implementation, and evaluation of programs and services that are designed to ultimately meet our needs as the consumers of those services.

Community engagement was given a working definition by the Center for Disease Control and Prevention (CDC) when its first edition of its Principles was published. The organization agreed that community engagement was:

“…the process of working collaboratively with and through groups of people affiliated by geographic proximity, special interest, or similar situations to address issues affecting the well-being of those people. … It often involves partnerships and coalitions that help mobilize resources and influence systems, change relationships among partners, and serve as catalysts for changing policies, programs, and practices.“

  • (CDC, 1997, p 9 – published in CDC, Principles of Community Engagement Second Edition, 2011, p. 3).

As defined by the CDC, “the goals of community engagement are to build trust, enlist new resources and allies, create better communication, and improve overall health outcomes as successful projects evolve into lasting collaborations” (CDC, 2011, p. 3).

Community engagement means bringing together PLWHA and other community stakeholders such as neighborhoods, communities, policymakers, advocates, governments, religious and cultural leaders, funders, international agencies and regulatory bodies to develop partnerships, address gaps and difficulties, and support families and individuals. Building on unique experiences and strengths, each stakeholder has a different role to play in the collaborative process of working towards optimal HIV health outcomes along the care continuum.

The Community Advisory Board (CAB) is one form of community engagement. CABs can play an important role, helping ensure that those of us most affected at the local level have a channel through which to voice our needs and concerns, and obtain information. Most CABs’ membership reflects the profile of HIV/AIDS in their community in terms of race, ethnicity, gender, sexual orientation, gender identity, mode of transmission, and geographic region. It is also vital to use other ways to engage and solicit input from the community.

Recognizing this need, the Massachusetts Statewide Consumer Advisory Board’s (SWCAB) community engagement practices have evolved over time. While still relying heavily on the SWCAB, we are moving in a new direction – identifying kinds of conversations for more consumer feedback and engaging a broader network of consumers. These conversations include drug user health, PrEP, gay men’s health, barriers to care and linkages to care. Moving forward other approaches, both formally and informally, may include consumer surveys, needs assessment surveys, interviews, focus groups, mobile meetings in targeted communities, suggestion boxes, consumer forums, public hearings and working groups, among others.

Engaging a community in discussion increases everyone’s level of awareness, allows individuals to advocate for their ideas, and offers a format to gather advice or guidance based on the community’s expertise and experiences. The diversity and the number of identified stakeholders are increased. Consumers and other stakeholders are educated on the issue and invited to contribute to the process, thereby expanding access to available knowledge and skills. When communities are engaged at the beginning and throughout the process they are apt to be more receptive to the outcome, have capacity to implement change, and may maintain long-term partnerships.

We PLWHAs provide a critical and necessary perspective on the planning, implementation, evaluation, and quality improvement of HIV/AIDS policies, programs and services that are designed ultimately to meet our needs. In my opinion, it is our responsibility to participate in community engagement discussions and decision-making that so significantly impact the lives of those of us living with, affected by or at risk for HIV/AIDS. Wherever you may be on the HIV disclosure continuum, there is an opportunity. Whether it be completing an anonymous survey, attending a consumer forum or educating Congress on HIV/AIDS—Your Voice Matters!

References

Center for Disease Control and Prevention (CDC). (1997). Community engagement: Definitions and organizing concepts from the literature.

Center for Disease Control and Prevention (CDC). (June 2011). Principles of community engagement. Second edition.