My mother was a teacher. In my boisterous teens, she would tell me that we “create our own boxes” that limit us in life. She was probably referring to my casual drug use and talent for truancy. Back then, I thought she was reading too much Psychology Today in the faculty lounge. But now, I know she was right. Wittingly or not, we create our own limitations; we box ourselves in.
After I was diagnosed with HIV, in 2000, I tried, really tried, to hold down my job as a corporate finance lawyer at a big-deal New York firm. But after a year, despite being asymptomatic and having an undetectable viral load, I thought I just couldn’t hack it. I felt trapped by my diagnosis. So I played hooky, sold my apartment, then skipped town. The idea: take it easy and travel while scaling the younger side of 40. I’m still undetectable and asymptomatic, and I realize how fortunate I’ve been compared with so many others truly trapped by HIV. But sometimes, I focus on walls instead of doors.
Who could blame me? As isolating as HIV is, it adds insult to illness by limiting one’s freedom of movement. Surely, you’ve experienced the “I’m going away for X days; do I have enough meds?” dilemma. When the answer is no, things get a tad more complicated.
Back in 2000, when I called New York’s AIDS Drug Assistance Program for a so-called vacation override to refill early, I was informed that I had to be on the program for six months first. Which moron bureaucrat dreamed that up? All I wanted was to go away for a long weekend. After multiple calls to the State Department of Health and wasting my time and energy, I finally had them override their own dumb rule.
Five years of premature retirement passed. With dwindling funds and 40 fast approaching, I decided to leave Manhattan. I had lived there my entire life, but rightly or wrongly, it represented a kind of failure to me, an imagined box. I had followed all the rules, I told myself, only to have disaster strike. So where did I move? New Orleans—three months before Katrina hit. I didn’t realize how lucky I’d had it. Even before the storm, Louisiana’s ADAP made New York’s seem utopian. As my med supply shrank, I resorted to having my HIV negative cousin masquerade as me at the pharmacy and FedEx my pills from New York. Oh, the guilt. But if I was to stay in New Orleans, I believed it was the only solution.
After the storm, I decided that staying was impossible. I moved yet again, back to Manhattan, where a friend offered me her legal job in London. A dream job, in a dream city. I went through the “I can’t interview for a job abroad—I’m positive” phase, followed by frustration and then, thankfully, the “I’m sure it’s been done before—fuck it!” revelation. I must face the daunting box of negotiating a visa while not disclosing my status. I don’t even know whether England requires a physical. I don’t know whether the National Health Service will exclude me as a foreigner with an expensive preexisting condition. Will my first claim for meds become a one-way ticket home?
I have pressed another friend into FedEx duty, but it’ll cost me—a FedEx to England is $60. And it’s risky. What if British customs agents open the package and don’t like what they see? I suppose I could do some research first. But I want this to be a blind jump. For once, I’ve resolved not to let the titanium box that is HIV contain me. Instead, I’ll just bring it along.