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Robert's Walk With AIDS (Epilogue): What I'd Like to Say to Those With HIV/AIDS

Posted: 12/05/2012 9:11 pm

This is the epilogue to the series of blog posts chronicling life with my partner, Robert, who died of AIDS March 21, 2002. Read Part 1 here, Part 2 here, Part 3 here, Part 4 here, Part 5 here, Part 6 here, Part 7 here, Part 8 here, Part 9 here, Part 10 here, Part 11 here, Part 12 here, Part 13 here, Part 14 here and Part 15 here.

At some point Robert decided to stop taking his medicine. He had his reasons, and I respected his decision. A friend of his, Kevin, told me not to blame Robert, because "he chose to go without meds." Robert had lost hope. He didn't think he was going to get any better. His health was always going to be a roller coaster ride, and he was tired of it.

If Robert were living now, life for him would be completely different. I remember him having to take up to 15 pills daily. Some of them looked as big as a peach pit. It was a daily struggle for him to down all those pills day in and day out. In many cases the side effects of those drugs were devastating. Nowadays there are people with HIV who only need to take one pill a day. Most Americans with HIV live nearly normal, if challenging, lives.

Secondly, the Internet has made it possible for us to connect with total strangers with the same needs. In the early '90s technology was all about email and instant messages. Now there are thousands of HIV/AIDS organizations throughout the world, all with their own websites, advocating for the eradication of HIV/AIDS through early screenings, education and subsequent medical interventions. "CHANGE HIVSTORY" is but one example. The goal of these good, Vancouver-based people is to end HIV through early detection, treatment and prevention. There are countless other organizations, large and small, staffed by some extraordinary people, too numerous to mention in a blog. A simple Google search will lead you to just about any kind of help you need.

My Twitter feed is also full of individuals like Josh, who is one the many Twitter warriors who keep a blog encouraging others to connect with them to tell their story, thereby reducing the stigma surrounding HIV/AIDS. I like to think that were Robert still alive, he would be doing the same kind of work that these people are doing. Instead of me telling him that he "didn't do anything wrong," Robert would be the one comforting and educating others.

Do we still have a ways to go? Of course we do. Just reading the comments on last week's blog posts about World AIDS Day, I was saddened by the lack of compassion many have toward those with HIV/AIDS. Even more troubling is the cavalier attitude held by others who feel that they are impervious to STDs and continue engaging in high-risk behaviors. It's like we haven't learned anything at all.

I refuse to let the lives of all those known and unknown who died of AIDS have no impact on our lives today. We owe so much more to our children, lovers, brothers, sisters and friends who passed on. If you have AIDS or are HIV-positive, you have an awesome responsibility. Try to see yourself as a leader, mentor and teacher. Be the one to keep the candles burning and the red ribbons on our lapels. Remind yourself daily that there is no room in your suitcase for shame. You will find allies. We number greater than those who turn away from you and offer no help in eradicating this disease.

Don't look back and say, "I coulda, woulda, shoulda." Move forward, and we will move forward with you.

I believe that soon there will be a generation free of HIV and AIDS.

I would like to thank Warren for being extremely patient with me as I relived my journey with Robert, Bob Leahy for inviting me to be a guest author on the volunteer website PositiveLite.com, and all the individuals who encouraged me to continue telling Robert's story.

 

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