HIV/AIDS Awareness. A father’s choice.

Archive for the ‘Family’ Category

“Courage is fire, and bullying is smoke.” ~Benjamin Disraeli

Now that quote is old. This guy Benjamin Disraeli lived in the 1800’s in Great Britain. I guess it means that no matter how much we like to say we have grown or evolved, not a whole lot has changed when you are on the receiving end of bullying.

What the hell are you so afraid of?

Now you might think that I am talking to the young gays who have been so affected by the taunts and beat downs. I am not.

I am talking to the bullies. Because if you have to bully someone, you’ve got to be afraid of something big in yourself or something that you don’t understand or you wouldn’t be putting up all that smoke.

The time has come to start finding out what this fear is all about and where it is coming from.  Are we – the parents – transferring our fears to our kids? Fear about what is going to happen to us in this economy? Fear that our government isn’t looking out for the working man? Fear that we are not all we should be?

I have read that it is a lack of empathy, compassion, and kindness that leads to bullying. But from where I sit, it is flat out fear that blocks our ability to see or treat someone different with kindness or compassion.

I come from a background running businesses in the construction and auto industry. We are tough guys that work hard to make a good living. But I learned a long time ago that the real tough guy has courage and fire – he doesn’t need to blow smoke by bullying.

My son is gay and he is HIV positive. I would be lying if I said that it didn’t scare me. I am most afraid of what he will face in his life – not that he didn’t live up to my expectations of what my son was to be. (It seems that pro football career is just not happening.)

It takes courage to step outside our comfort zone. The reason I liked the Disraeli quote so much was because it said courage is fire. We’ve got to burn down the walls of our little comfort zone to face new things and new people. We’ve got to burn down the walls to not be so afraid of what is on the other side.

You just might like what you find, I know I did. When the smoke is blown away, you can usually see the real person or the situation for what it is.

Our whole lives we are going to be facing new things and new people. Are we going to be afraid of everything that comes along and miss out on what life has to offer? I know that I am not going to miss a moment of my son’s life with all of the good times and all of the bad even if his being gay and HIV positive were not in my plans.

If I can become a blogger and advocate for those living with HIV, there may be no limits to what you can do if you face your fears.

So I ask one more time of the bullies (and their parents):

What are you so afraid of????

“I didn’t fail the test, I just found 100 ways to do it wrong” ~Benjamin Franklin

I started this series with the words we all get knocked down once in a while. Its part of what makes life interesting and it keeps us on our toes.

And I am going to end with a few simple words, “A good life doesn’t just happen. Get up and fight for it!”

Close and meaningful relationships, a fulfilling career, a healthy life, a sense of satisfaction and gratitude—nothing just happens.

Rather, everything in our life is in direct proportion to the attention, effort and importance we give. We’ve got to fight for it.

We all experience failure, setbacks, disappointments and obstacles. There is no denying that a punch hurts and it can knock us down. We are human. Bad tests, side effects and stigma hurt us. It’s part of the deal of being positive.

But in the same life, there are happy times, accomplishments, and a sense of belonging.

How will you fight for the good things?

It all comes down to this one thing—what you give your attention to becomes the reality of your world.

Give your attention to solely to the fear and uncertainty of HIV and that will shape your life and your world around you. If the blows from this disease are what you think about, dwell on, and live with each day, it will limit your life.

Instead, focus your attention on what’s good, amazing, abundant, wonderful and possible in the world. Focus your attention on ideas, information and knowledge that can help you grow, stay healthy, create and contribute to making a positive difference. Going down for the count doesn’t work here.  Turn OFF the count… it will change your world and your life!

Here a couple of suggestions for turning your focus around:

Get knowledgeable about HIV and understand what you can do to make a difference in living a healthy life. We have done a lot of research here at MyHIVAIDSAwareness.com and have found many ways that you can directly impact your disease progression. It is not out of your control.

Go SUPERSONIC and get past the naysayers. Don’t listen to the negative voices and stay on your path to wellness. To get past something you have to be moving forward.

Understand Karma and reaping what you sow. Doesn’t matter what your religion is or even if you are religious. It does matter that for every event that occurs, there will follow another event whose existence was caused by the first. Step in and take control.

Use your personal power to help others. Giving feels good, but there’s more to it than that. When we direct our energy and focus on meeting others’ needs, we push aside our concerns and negative emotions. We open up our world.

Nothing is more challenging than facing a life long illness. There are no tomorrows where the battle with HIV will not be part of your life. But there are many more tomorrows that can be wonderful and fulfilling if you focus on finding them. We are here to help you do just that.

In the coming weeks, my team will be announcing the results of our work that focuses on your tomorrows.  We worked to find simple solutions to improve your daily living with HIV and make a positive difference in your life. Stay tuned!

“I know that you believe you understand what you think I said, but I’m not sure you realize that what you heard is not what I meant.” ~Robert McCloskey

Contrary to what many might think (and do), the most important job of a parent is not to speak, preach, direct or yell.

The most important job of a parent is to listen.

If you were to listen, you would hear that your adult son or daughter becomes very much the child when talking about what their parents mean in their battle against HIV.

As I have spoken to HIV+ adults around the country it has never ceased to surprise  - and sometimes distress – me to see the reaction when I talk about being a dad. Somehow it has become okay to not be a dad if your son or daughter has a lifestyle that you don’t approve of. I have seen first hand the pain it causes when you lose your parents over being gay or having HIV.

We don’t get to pick who our children are anymore than they got to pick who their parents were.

I know that people are afraid of HIV and don’t like to think about the lifestyle choices of their kids if they are different than their own. But we parents can make the ultimate difference in our child’s life with HIV by providing what parents do: love and support.

I created “My Child is HIV+” – A Living Guide for Parents for Father’s Day. I wrote it for the parents of HIV positive adults who need their moms and dads to be on their team.

Inside the pages you will find basic information about HIV/AIDS and some of the things that a parent needs to know to fully support their HIV positive child. I want to thank both the parents and adult children affected by HIV for providing valuable insight for me in writing this guide. It was hard sometimes to find the right words.

The guide is the result of asking questions and seeking the answers to allow those with HIV to live a full life without unnecessary limitations. It is about cutting through the “nice to know” and providing the “need to know”.  I hope you share it with your clients, friends and family.

You can get your copy right here by putting your name and email address in the form on the right column of this page.

My final word to parents: If you want to be a person of great importance in your child’s life, if you want to teach your children, motivate them, inspire them and lead them, then learn to listen.

1. Talk less. Listen more.

2. Make fewer statements. Ask more questions.

3. Make it your mission to understand HIV.

Just last week much was written about the twentieth anniversary of Ryan White’s death including my thoughts on this blog.

It is surprising to know that students still find it difficult to talk about HIV.  At this week’s University of Maine Know Your Status event, student and peer educator Megan Arsenault said, “Sometimes this is not an issue that a lot of people like to talk about.  Whether they’re embarrassed or scared or just don’t know where the right resources are.” To read more about U Maine’s event, please click here: http://www.wabi.tv/news/11168/umaine-students-talk-hiv.

Today, many of the parents and grandparents raising children still can’t talk about HIV. It is true that they don’t face the earlier thoughts that casual contact or a blood transfusion could spread the virus, but teens and young adults make up one of the fastest growing segments of HIV infection.

Talking about HIV and AIDS means talking about sexual behaviors — and it’s not always easy for parents to talk about sexual feelings and behavior with their kids. Similarly, it’s not always easy for teens to open up or to believe that issues like HIV and AIDS can affect them.

Even further complicated is talking about drug use and the dangers of sharing needles. Most of the talks I remember about sex and drugs center around don’t do it – not how to do it safely. For a parent to talk about it, they’ve got to believe themselves that the threat is real. We have to know about HIV ourselves.

Want to help someone you love know a little bit more about HIV? Here are a couple of favorite resources that you should check out:

Facts for Life: What you and the people you care about need to know about HIV/AIDS from AmfAR.

http://www.amfar.org/uploadedFiles/In_the_Community/Publications/Facts%20for%20Life.pdf

What You Should Know About HIV from UNAIDS

http://data.unaids.org/pub/FactSheet/2008/20080519_fastfacts_hiv_en.pdf

HIV AIDS 101 from AIDS.gov

http://www.aids.gov/hiv-aids-basics/hiv-aids-101/overview/what-is-hiv-aids/index.html

HIV Information for Parents from Advocates for Youth

http://www.advocatesforyouth.org/index.php?option=com_content&task=view&id=813&Itemid=67

Studies have shown that teens who have discussed sexual contact and protection before they have sex are far less likely to contract an STD or HIV. Talking saves lives.

…but let it be more about his life.

Ryan White was diagnosed with AIDS at age 13 and gained international notoriety fighting for the simple right to attend school. In his short life, he opened hearts to the humanity of AIDS and opened minds to its reality.

As a father, I remember him most as a student and a son. He taught us about courage and forgiveness when by all accounts he should have shown none. His mother taught me how the strength of a parent can help shape the life of a child – even one facing the uncertain future of HIV/AIDS.

Photo courtesy of humanillnesses.com

It may have been inevitable that he would succumb to AIDS in a world without early diagnosis and anti-retroviral therapy. But his family’s fight for basic human rights drove awareness and focus in a time of fear and ignorance.

After moving to a new community, Ryan was able to thrive in his new world, attending school events, learning to drive, and making the honor roll. Maybe for a little while, he got to be a kid.

Two decades later, Ryan’s legacy lives on. His mark can be found in legislation that provides assistance to AIDS victims and in the commitment of his mother and friends around the world to fight the disease that killed Ryan.

His name is on our country’s most significant AIDS legislation: The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. First approved in 1990 and extended in 2009 by President Obama, the act created the nation’s largest HIV/AIDS federal grant program. It has been called America’s most important step in fighting the AIDS epidemic, helping thousands annually to receive support and care.

May we never need another Ryan White to lead a nation to better understanding. Bless Ryan and his family for their conviction and strength. This was something he didn’t need to go to school to learn.

“AIDS can destroy a family if you let it, but luckily for my sister and me, mom taught us to keep going. Don’t give up, be proud of who you are, and never feel sorry for yourself.”

~Ryan White

To find out more about the life and legacy of Ryan White, please visit http://ryanwhite.com.

I was speaking to a group at the Southwest Center for HIV/AIDS (http://www.swhiv.org) and heard some objections to the word “control” when it was used by another speaker. I started to think about what influence we really have over any aspect of our lives after a positive test…

The old Miram Webster dictionary says that control means to exercise restraining or directing influence over something or to have power over it. Let’s examine some ways we still have some control over our lives:

First, we control whether we seek or begin treatment.  The decision to begin treatment is a personal one best made in consultation with your healthcare provider.

Second, we control who we share our status with and who will be on our support team. I recently wrote a blog post about the positive benefits to your immune system when you share your status with supportive family and friends. It is your choice whether to share your status and who you share it with.

Third, we control our lifestyle choices. Even after a positive diagnosis, we make impactful choices about living a healthier lifestyle. Studies have shown that infection with a second strain of HIV (superinfection) may have medical consequences.

Fourth, we control our nutrition and diet. There are some basics we all should be aware of including the need for additional protein and calories in our diet. Several of the antiretroviral medications also require increased water intake in order to prevent kidney complications.

Fifth, we control how much we know about HIV. Have you heard the phrase “Knowledge is Power”? Read, ask, and share are the only ways that we will have the knowledge to take back some control after a positive diagnosis.

There are many more ways to exert some control over a diagnosis that may have us feeling out of control.

I recommend starting with Positively Aware – a publication by the Test Positive Awareness Network.  Please visit: http://positivelyaware.com/ . This bi-monthly publication is loaded with useful information.

Check back here frequently for more information and sources to build your knowledge and power.

FXWHUZE4J63R

I knew that my son sharing his HIV status made our family stronger. What I didn’t realize is that he could have been making his immune system stronger as well.

Recent research has shown that people who were open about having HIV had a stronger immune system than those who didn’t and less illness as well.

There are many reasons why you might want to tell people that you have HIV, not least is the loving support which your partner, family and friends might be able to provide.

Being open about having HIV can also mean that you have more hope about your future.

A 2006 study by AIDS Services for the Monadnock Region (ASMR) in New Hampshire found that higher hope scores were associated with a stronger commitment to manage their illness and lower perceived denial.

More importantly, those with higher hope scores reported greater overall health, greater satisfaction with their physical state, and a higher energy level. The study also reported the higher hope scores were correlated with higher CD4 values at the start of the study and subsequently eight months afterward.

Decisions regarding sharing your HIV status are not simple ones. There are many factors that must be taken into considerations. It’s important to think about who you are going to tell, and your reasons for telling them.

Unfortunately, it is true that some people have experienced discrimination or rejection when they’ve told others that they are HIV positive.  You will have to determine what is best for you. 

The most important thing is that you feel you have control over who you tell about your HIV status. Now you may have some control over your HIV as well.