My Fight with HIV

Survival depends on interior design

by Christopher Costas

Christopher & Brock. Photo by Christopher Costas

My fight with HIV began before 1981. I was the third person diagnosed with GRID, at Georgetown University Hospital just before my fifteenth birthday. With tear-filled eyes Dr. Joseph Bellanti, head of Pediatrics, told me and my parents I had six to eight months to live. My future was bleak. That day I became a soldier in a war that has taken over 35 million lives. I became a statistic in this war where a staggering 36.7 million individuals are living with HIV/AIDS. I was offered no medication with which to go to battle. No protocol to follow. Nothing. It was too shocking, too devastating for me to wrap my arms around something I couldn’t understand. But this was how I responded to the news that my life would be cut short. I hope it will encourage you to never give up.

That day I had a conversation with God, who offerrd me hope that “all things are possible.” I had no other option except to trust and believe there was a different plan for me. So, God and Hope were the only medications until I turned seventeen.

Finally, drugs “in study form,” advanced for distribution to the bravest. It seemed that every drug was “served” with handfuls of nausea. Frequently, I flushed the meds down the toilet. I lived recklessly that summer. It became my everyday goal to accomplish everything that this virus threatened to steal from me. At first it was hard to put shape and form to do this.

Fear, anger, and grief were the emotions that motivated many of my decisions then. I sowed a lot of wild oats. It wasn’t until I understood that life is a gift, that I began the search to make every minute count and to figure out the reason I am still here forty years later. Encouraging others helped me survive some pretty horrific things and brought me greater peace.

It seemed reasonable to add supplements to my healthy living plan. I eliminated as much stress as possible and surrounded myself with supportive friends who encouraged me to be my best. Survival was the top of my list. Often I would draw on the flow of creativity to take my mind off symptoms. In my teens I desired to be a published interior designer. The beginning of my legacy was at twenty-one years old. The first few articles printed were in the Washington Post “Home” section and the Arlington News Journal. Without formal training, I was published in Southern Accents magazine with a cover story and a twelve-page article on an eighteenth-century farmhouse that I restored with a friend in Oakton, Virginia in 1994.

The virus kept at bay pretty much for ten years. Then, what began with a severe headache led to surgery to remove several feet of my small intestine. I had frequent grand mal seizures and toxoplasmosis-related lesions, thirty-eight in all, like a bathing cap wrapped around my brain. No medicine would fix it. I was in intensive care for three weeks. The doctor told my family, “We have done everything we could. I am sorry, so sorry.” Even though I was ill for a very long time, I am grateful to say that I lived. I was told my family and friends prayed a lot.

HIV has delivered powerful blows to my body; however, since the “cocktail” was introduced, I have had no detectible viral load.

The far greatest test of my faith came in 2013. A side effect of Truvada became toxic for me. My kidneys failed overnight. I went into end stage kidney failure, stage 6. The treatments were no picnic. I began dialysis for six hours a day, three times a week. Dialysis is not a cure; it’s a treatment to rid a patient’s blood of toxins. To deal with the difficult side effects, I turned to marijuana for relief, lots of it. I told the nurses, “I won’t be in dialysis long.” A loud voice in my gut impressed me to believe that life hooked to a dialysis machine and the eventuality of a transplant was not God’s best for me. I couldn’t explain the deep expectation that change was in store for me. I grabbed onto the hope that I needed a miracle. I had no idea how that would take place. Then after exactly two years, to the dismay of the medical staff (every doctor said that I could die if I did not receive the dialysis treatment within forty eight hours), I left dialysis. It wasn’t the chipped beef on toast for breakfast nor green tea I consumed by the gallon that made the crucial difference. I believe that prayer and marijuana, working together, started my kidneys after both had not been working for two years.

Even when kidneys fail or a doctor finds a huge tumor wrapped into the lining of your stomach, or you find yourself strapped to a cot because of transient global amnesia, never give up. I had Hope in my heart. I pressed in. I pressed in really hard. All the time. From the beginning, my life has been an adventure, and my aim has been to share something you can grasp to give you hope at a time when challenges may seem impossible to overcome. You’re not alone in the fight, whatever the diagnosis.
We cannot always influence what tomorrow brings our way, but I learned that I always have the “right” to choose how to respond.

YOU CAN MAKE IT. Allow your reach to exceed your grasp.

You too can become a long-term survivor and choose to take back the life that was stolen from you.

Christopher Costas, raised in Potomac, Maryland, a D.C. suburb, now lives in Lewes, Delaware. His work in interior design, and fitness and portrait photography has been featured in publications such as Southern Accents, Country Home, and the Washington Post, among others. Christopher is the founder of World Survivor Day, held every August 1. Christopher advocates for the recognition of the history of those that survived the virus, and also shares his own story of hope as a public speaker. To contact Christopher Costas, send him an email to [email protected] or find him on Facebook and Twitter.