Terrell Starks says he’d rather suffer the often-excruciating pain of sickle cell disease than take more painkillers that would sedate him. “They just make you sleep all day,” he tells me as he sits up in his bed. “It’s just not a good feeling. You’re there – like your body’s there – but you’re not.”

Terrell, who is dying at 23 years old, wants to be fully present in his final days, savoring every morsel of life he still can.

He wants to spend time with his parents, Valicia and Carl, doing things he can still do, like assembling puzzles and planting tomato and collard-green seeds in cups in anticipation of a spring garden. He wants to be able to think about things. While he watches Rachael Ray’s cooking show on television, for example, he tells me that he imagines what it would be like to start a bakery or a restaurant – something he’s always wanted to do. Before sickle cell disease began taking his final toll, Terrell was enrolled in culinary classes and baking elaborate cakes for relatives and friends.

Today, his bedroom has become his whole world at a time when his peers are branching out and making their way as young adults. An oxygen tube snakes from his nose, leading to a machine in the family’s living room that hums with each mechanical breath. Carl and Valicia spend much of their time in their son’s bedroom, eating meals with him, snuggling with him on the bed, watching television and joking over memories. At times, when Terrell can muster enough energy, he walks into another room. But often just the walking takes so much out of him that he puts his head on his mother’s lap and goes to sleep. Sometimes, his pain is so intense that it radiates throughout his body and forces him to curl up in a fetal position.

Valicia shares Terrell’s opinions about sedating medication. When a hospice nurse recently mentioned Terrell might benefit from painkillers that could make him sleepier, she resisted the idea. Like him, she wants to squeeze out every last moment with her son, just as she did with her daughter Dominique, who died of sickle cell five years ago at age 17. At the end of her life, even her mother’s touch was too painful to endure.

In the past few weeks, photographer Sam Upshaw and I have visited the Starks family several times, and we plan to follow them through Terrell’s death.

Editors and others have asked what it feels like to be in their home: Is it depressing? I tell them it’s not. In many ways, it is full of life. Their love for each other is palpable; I see it in the gentleness with which the parents administer medications and in the way Terrell tenderly holds his mother’s hand while she speaks to me. They know each other completely; they often finish each other’s sentences. They all say they try not to dwell on what lies ahead, or what could have been. They just treasure what they have now, as a family.

I wonder, as I watch them, whether I would choose a full but horribly painful life over sedating painkillers. I’d like to think I would. I admire Terrell’s mature perspective, a perspective he’s had to develop far too early in life. I get the feeling that spending time with him and his family will teach me more about living than dying.