Positive since 1997
In 1997, I was diagnosed with AIDS. My weight dropped to 118 pounds and I was oblivious. My past was littered with depression, dabbling with drugs and risky sexual behavior. I’m not really sure why I didn’t know what was going on. I now believe it was denial and self-loathing.
I had PCP and Cryptococcal meningitis when I was diagnosed. For most people, this would have been a death sentence. Part of my denial was to keep my HIV status a secret. Living through the height of the epidemic I feared stigma and rejection. As part of my recovery, a friend took me to a retreat in Maine for HIV-positive people. I finally felt part of a community.
Over the years I had numerous bouts of PCP and meningitis. And yet I still lived in denial. In 2010, yet another PCP diagnosis was a turning point in my life. I realized I could no longer keep up the charade. I needed to make extreme life changes if I wanted to live. I believed that life was sending me a message. I had to help others and get the message out about this horrible disease. I told my family and close friends I was HIV positive. I found a great LGBTQ organization and started educating youth about HIV, safe sex and prevention.
In 2012, my life still seemed dark, and I felt that AIDS was going to take my life. Fighting demons and depression associated with my past and HIV, I attempted suicide. I spent four days on a ventilator and a month in the hospital. After recovering, I once again had a clear direction and life path. But my battle for life was not over.
In September 2012, I was rushed to the hospital and diagnosed with diffuse large B-cell lymphoma. Without treatment, I was told I had less than two weeks to live. With treatment I had a 40 percent chance of survival.
During my recovery I had to be resuscitated three times. I had lots of chemotherapy and spent two months in the hospital. I also had outpatient chemo. Today I am cancer free. I am so grateful to all of my family and friends who helped me along this road to recovery.
I have been near death almost 20 times since my diagnosis in 1997 and I now realize that I am so grateful to have found a greater plan for my life. That plan is to “pay it forward.” I currently work with LGBTQ youth, educating them about HIV and explaining the consequences of risky behavior. I educate HIV-positive people about risks of unsafe sex, contracting additional strains of the virus and exposing others.
I realize that I am not only a warrior in my own life, but that I must also show the world that with hope and life without stigma you can conquer anything. Stigma is merely ignorance about this disease. As HIV warriors we must continue the fight and educate people about prevention. We need to show we are all survivors and we can eliminate stigma for all generations to come.
What three adjectives best describe you?
Honest, compassionate and dedicated.
What is your greatest achievement?
Being able to pay it forward by educating future generations about HIV and encouraging them to get tested. I am an HIV warrior in the state of Maine and in Arizona. It is my goal to stamp out stigma.
What is your greatest regret?
That it took so long to own my disease and be able to pay it forward. I was in denial for 13 years. Now I own it and live life to it’s fullest every day.
What keeps you up at night?
Thinking of new ways to reach out to the world and make a difference
If you could change one thing about living with HIV, what would it be?
I would change nothing. I would not be the person I am today had I not contracted HIV. It has made me not only appreciate my life, but my journey.
What is the best advice you ever received?
From my grandmother: Never be ashamed to be all that you can be. Your life has no limits. Live it to its fullest.
What person in the HIV/AIDS community do you most admire?
My dear friend Kent. He does so much not only for people living with HIV but also for the entire state of Maine.
What drives you to do what you do?
My love for people and desire to make a difference. To help others be all they can be. To get the word out that there is a life without stigma.
What is your motto?
Life is not measured by our own accomplishments, but by the lives that we have touched and the people we have helped on our journey. For this, our life will have purpose and meaning.
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
My dog and my gratitude box
If you could be any animal, what would you be? And why?
A dog. They are loyal and loving to the end.
Robert Knight was included on the 2013 POZ 100. Click here to read his entry.