My parents discovered very early that I had sickle cell disease. They were told it would be hard for me to cross eighteen. Anytime I had a serious crisis, they stayed with me and prayed all night. I wasn’t their only child. They had two other children apart from me. At one point, I asked myself, “Why do they care this much? After all, there’s John and Efe. They are healthy. When I die, they’ll be there so why are they trying this hard for me?”

But then, I celebrated my tenth birthday, then the 15th and later the dreaded eighteenth birthday. Once I crossed that milestone, I grew some new faith that said, “You belong here. You deserve to live just like the trees and humans and everything in nature.” But the crisis kept coming. At one point, I spent more days in the hospital bed than I spent in my own bed. Each time we got to that point, I knew it could be the end but the end never came. It still hasn’t come. Smiling.

At twenty-four I fell in love. That was my first  He left me a month later when I told him I had SCD. I’d already postponed a huge chunk of my life because of this sickness and I wasn’t ready to keep going like that. When he left, another boy came my way. We planned a date on his birthday. A night before his birthday I had a serious crisis. I couldn’t pick up his calls. I couldn’t respond to his text messages. Days later when I felt a little OK, I texted, “Sorry I couldn’t be there for you. There’s something I need to tell you. I will the next time we meet.”

When we met, I told him everything and the reason I didn’t show up. He asked, “So you’re sure this disease isn’t communicable?” I laughed. “No, it’s not. You can read about it. If you don’t have it, you’ll never have it through someone.”

Maybe he didn’t believe me. From there, communication between us grew more infrequent until one day, “How are you?” And “I’m fine” became our last conversation. I think a year or two later, he appeared to give me closure. He said he was scared I was going to die too soon or someday I would be with him and hit a crisis and he wouldn’t know what to do. I understood him and thanked him for passing through my life.

I was twenty-seven and was still living with my parents. They were so protective of me they didn’t want me to leave their side. Out of stubborn rage, I applied for a job outside town and I had it. I told them I was leaving for a new adventure and that day felt like my funeral. They said no. I asked why not. They said it wasn’t safe out there without them. Life has to be lived and I had to go out there and live it.

I left home with the promise I was going to call them every day. Once something happened, they were the first to know about it.

I came to Accra and met Jude. His office wasn’t far from where my office was. We struck an acquaintance that became so intense we were more than lovers. He couldn’t propose until he was transferred from his branch. He proposed to me and because I loved him so much, I didn’t tell him about my situation. Those I told left me in the dark. I didn’t want to lose this one.

It looks like my SCD is scared of love. Anytime I’m in love and happy, it shows its ugly face to turn my day into a starless night.

We dated for over six months. I was stable and strong. Jude was either in my house or I was in his house. I prayed each time I was with him that I should wake up strong with the sun shining on my face. God listened and kept us going through the months until I hit a major crisis. The next day my parents were in town. Jude was with me at the hospital but didn’t know what was happening. They kept pushing him aside and told him to stand out of the way while my bed was being wheeled up and down.

When the storm calmed, I told him everything and he looked at me like a deer in a headlights. “Why didn’t you tell me earlier?” He asked me. I didn’t have an answer so I looked at him with my pale eyes and rusty lips. “I’m fine now,” I told him.

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Days later, after avoiding my calls for a while, he texted, “I’m sorry I can’t do it anymore. I’m AS. It doesn’t look good for the two of us.”

I knew he was lying about his status just to buy his way out of the relationship but I didn’t ask any questions. I answered, “I’m sorry I didn’t tell you earlier but you didn’t have to lie. I understand.”

We talked less and less until I didn’t hear from him or see him around again.

One day I woke in the hospital and saw him standing next to my bed. It had been over a year. My dad and my mom were there. He looked at me without saying anything. I closed my eyes and pretended he wasn’t there. My dad said, “Your friend Jude came to see you.” I didn’t open my eyes. I just nodded.

When my parents went outside, he was still there. I asked, “How long have you been here?” He mentioned some hours I’ve forgotten. And the next question was, “What have you told my parents? What did you say you were to me?” He answered, “They didn’t ask. Maybe they know I’m a friend.”

The visit became frequent. He came around twice a day. He would ask me, “What do you need on my way coming?” I would tell him something and he would get more than that. The day I was discharged, I didn’t see him in the ward. When I stepped out with my parents by my side, I saw him in an Uber waiting for me. My dad sat in front. Jude sat on my left side and my mom on my right. When the car moved, I put my head on his shoulder. I’d forgotten the hurt. He had paid the price with his presence. I forgave him.

Days later, I asked why he had to lie his way out of my life. He asked what lie and I told him, “Your genotype. I knew it was a lie but was it that important?” He answered, “I didn’t know my genotype at the time I was telling you so I was lying but today, if I tell you I’m AS, it isn’t a lie because I’ve checked.”

I’ve lost many friends because of my situation and I lost them at a point when I needed them the most. The people I call best friends didn’t answer my calls in the night because they knew I was going to ask for their help. In my situation, I can’t afford to be entitled. No one owes me anything. If they do it for me, they do it because they want to or because they love me. I don’t even hate them, the ones who left but since Jude came back into my life, he had never looked back. I haven’t had many serious crises but for each of them that I had, he was there for me from the beginning to the end when I was discharged.

He’s the only one who has seen me naked in a non-sexual way. He tells me he closes his eyes but I know he’s lying. When I’m down and out, nothing will tell him to close his eyes on me. He had seen me at my worst moments and didn’t shiver. This is someone I should appear pretty to because I loved him but we don’t care. My parents call him my brother. Friends think he’s a family, but we haven’t given a name to what exists between us. I refer to him as an ex when I want to tease him.

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One day at the hospital when he was filling a form for me, the doctor asked what he was to me. I was sick and frail but interested in his answer. I looked at him telling the doctor, “He’s my girlfriend.” When he realized I was looking at him he smiled. I said, “So you’ll never stop lying.” He shrugged. I closed my eyes with deep-seated contentment knowing very well I would open my eyes again and he would be there. We can’t be together as lovers but at this moment in my life, all the love I need, he gives and I’m OK with that.

—Sheena

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