To Be Loved

We didn't start the usual way. The questions we had had to ask in our relationship varied from normal to extreme.

It started with how many people we'd dated.

Me? Zero. Him, about eight.

Of course, sexual preferences were mentioned. I told him I was pansexual, he told me he was heterosexual, the fairly boring sexual persuasion. In his own right, he has always been an interesting person. On my part, I'd never had to share with anyone the extent of my disease and how it affected me. This information wasn't relevant to makeout sessions and online in-person hookups. Those people didn't need to know me but this man, I wanted to share with him.

We were friends first, for two years. My gender didn't affect his ability to be a good friend, to encourage me when I needed it. When he took over a youth poetry center, at that point I'd started going to his poetry spot full-time. It was now my spot too. When I did spoken word, I let people know what it felt like to burn and ache beneath the skin. I used poetry to help people understand systemic lupus and how it ostracized me from most of my peers. In the poetry community, I found my family and he found me.

However, talking about the suffering I experience and living it with me are two different things. I would have understood if he had walked away. My disease should frighten the foolhardy. It frightens me. Three months into our relationship and my condition started spiraling. An allergic reaction to medication had me hospitalized. My skin had came off in pus-filled blisters and what didn't ooze became so weak I could peel it away with my fingers. I lost the palms of my hands, the soles of my feet, my face was one of the first parts of me to be stripped away. There was no hiding my disease anymore. It used to be something that affected me from within but now...he could see it. As a black woman, it felt especially horrifying to see how easy it was to lose a part of your identity. Parts of me, I realized, would never come back.

At first, I tried to avoid seeing anyone, especially him. I didn't want to destroy what we had with images of my ruined body. I'd finally found someone who made me happy and having lupus for over thirteen years, this was all new. I didn't expect him to start taking care of me. I didn't expect him to run headfirst into learning about how to wrap my bandages. I didn't expect him to help bathe me or to carry me to the bathroom.

When I had a manic episode because my brain started swelling in my head, he didn't run. I had cursed him, told him I'd never wanted him, told him I wanted to end everything. I'd thrown things and instead of walking out of the relationship, he left the room. He found someone, good God he found someone to talk to me, to talk me down. He knew enough about himself to step away and get help. While he was away he found his mentors and asked what he should do and thankfully they were honest. They told him he'd outlive me, that that had to be the reality he was willing to live with. They also told him my mania could come back someday, that's the deal with lupus. They also said finally that a stable future may never be in our grasp.

He came back. He quit smoking, changed his diet, changed his life, prolonged his life so he could take care of me. At 35 he realized he needed to go back to school to support us both, so he did. The same committed, driven way he dedicated himself to learning to wrap my bandages, he sought to support us both. He told me he'd consider himself happy when I'm free to write and create my art. He tells me he's happiest the four hours he holds me before he wakes up for work.

At the same time, he supports me he works doubly hard for the city he loves, Richmond. He also knew I loved children and so he found me some. He found me a poetry family in Slam Richmond. A non-profit community center that he had taken over, its main goal is to educate kids on the power of writing. Back then, every Saturday was a chance to allow kids and adults from all over a chance to breathe their energy into the mic. These kids, from all walks of life, hard lives with rare soft experiences, he had me meet them and I knew we were kin immediately. Helping them write, watching them come out of their shell was one of the most healing experiences I'd had during my lupus' transformation.

We are now together six years and I wish I could say loving me has gotten easier but it hasn't. We have now come to accept other realities into our lives and I hate asking him to walk through them with me. We cannot be married. It's not that we can't afford it. I am disabled and the government supports me. If we were to marry I'd lose my health insurance and the job he worked at doesn't have the extensive insurance I need. I'm having hip surgery soon, the first surgery I've ever had. We've had to quickly accept this might be the first of many. We also have had to face the fact that I might never biologically have children, something we'd both kind of been dancing around but now, seems more certainty.

Yet, he comforts me. I'm too afraid to even talk about the surgery and he's already done the research. He's talked to family members on my behalf and reported back, as he holds me. Last night he told me, he's considered giving up writing for me, understand what that means. He has a pen tattooed on his arm, his love literally inked into his skin. He has gone to jail for his writing and I was the one that bailed him out. His writing has hurt him, made him cry, had him suffering in cold bus stations for hours. Thing is, he's never won anything, doesn't receive accolades for helping out his youth at the center yet it's never dulled his commitment. He has poured every dime that wasn't for us, into writing yet now with what 2020, has taken, last night he says, 'I have to give it up.'

I know I can't let him. I made him promise me he won't and as he slept I prayed for him to find his dreams because one of us has to. I'll never be the dancer I wanted to be but he can still be the writer and I might never be well but I want us so dearly to find happiness. Right now in 2021, like how so many of us felt during the inauguration, I hope for the best. I asked him again if he's sure about any of this. He said he wasn't sure about any of it, just that he loved me, so far that has been enough. We keep building, moving forward together, we keep hoping, that's always been the plan.

Music Video -Where The Sun and Moon Sleep by Aaron Fink