“Being sick allows you to check out of life. Getting well again means you have to check back in. It is absolutely crucial that you are ready to check back into life because you feel as though something has changed from the time before you were sick. Whatever it was that made you feel insecure, less than, or pressured in a way that was uncomfortable to you. You have to create a whole new life to check into.” — Portia Di Rossi, “Unbearable Lightness”
It has been a year since I first got sick, or almost, and the thought of braving the summer is somewhat terrifying to me. The heat, the sun, the TV shows that I watched throughout my illness—they all remind me of a time in my life when I was constantly afraid. I was afraid I was going to die. More than that, I was afraid I was going to die, alone and unloved and crazy and misunderstood and without ever doing anything positive with my life. I was afraid I would never be normal again, and because of it, nobody would ever love me, understand me, want to be my friend, find me attractive. In some ways, I felt like my life was over at an age that, by many standards, people consider the epitome of being young enough to be vibrant and enthusiastic about life, but wise enough to avoid the stupid mistakes you engaged in a decade earlier. I reached the age where it was time to be an adult, and all of the sudden, the world came tumbling down around me.
I am, of course, still not entirely well. I have a chronic condition that will be with me for the rest of my life, requiring medication and more rest than I’d prefer to need and more unwanted reactions to life than I’d prefer to have. I still have the occasional migraine with aura that may only last 15 minutes, but gives me such a sense of being out of control, that I am convinced I am going to die. I still have anxiety in places that are too bright, too loud, have too many people. I still can’t fly. I have a few really close friends in NYC that I’d love to visit and spend time with, but instinctively, I know that one of my favourite cities on Earth is too much for me, and that makes me a little sad. I still can’t seem to ditch the unwanted 20 pounds I gained when they put me on medication, something that makes me very sad. I can’t be as free-spirited and unconcerned with things as I used to be, because now there are consequences. If I forget to take my pill at the right time of day, drink too early in the day, push myself too hard or sit in the heat too long, there are consequences that are very unpleasant. If I don’t eat enough, or eat too many of the wrong things, or deny myself caffeine for days on end, my body rebels. It’s strange to suddenly be governed by rules and limitations.
My doctors have told me that over a period of 2-3 years, my condition will steadily improve. Symptoms will interfere with my life less and less, until they’re barely noticeable. Some people have issues with large, brightly-lit spaces for a lifetime; others can’t stand loud environments; still others can’t handle elevators or escalators.
Being me, and a pessimistic realist, I didn’t believe my doctors, who had been wrong so many times before in attempting to treat my illness. I am still young enough that 3 years seems like a lifetime. I imagine that, by then, I might be an entirely different person with an entirely different life, as it’s happened so many times before. It is hard for me to see three years down the road. It is hard for me to even imagine that I will be alive and well in three years. Some days, I doubt it. I have always had trouble imagining myself as a person with a future. Since my teenage years, I was convinced that I was going to die when I was 30. It seems coincidental, and yet almost too meaningful to be coincidental, that once I passed that mark, I developed a frightening illness that reminded me I wanted to live and didn’t really know how.
A year ago, I would not have believed that I could spend the day at a friend’s pool party without hiding from the sun the entire time, go to a rock concert, or travel to multiple cities on my own, places I’d never been before, to visit with friends. I would not have believed that I could handle a world full of buses, crowded stations, elevators, trains, and taxis on my own, along with almost 30 pounds of luggage added to my body weight.
I would not have imagined that in the year that’s elapsed since first getting sick, I’d have developed friendships that are among the most meaningful I’ve allowed into my life in years, simply because I took the time to talk one-on-one and invest myself in the kind of people who may never have caught my attention in a more vibrant, constantly moving social setting. I would not have imagined that not having something to do, somewhere to go, and someone to entertain almost every day would not only be acceptable to me, but would help me find a sense of peace and acceptance regarding myself.
Slowly, I’ve been checking back into life again, and the time I spent largely checked out of my old existence helped me to formulate a new one. One of the most shocking things I’m discovering about myself is that I’m not a co-dependent person. I’ve always thought I was, always been attracted to the guys who would constantly pay attention to me, take care of everything in my life, fix all my problems…and then suddenly run when it came time to make a commitment, or find myself looking for a different type of relationship. I like people, I like attention, I like being loved and cared for, but I have a self-sufficient streak that runs through my personality. I am happiest when I am allowed to engage it, when I can explore the world on my own terms from time to time. It is important to me to have friends and relationships in my life, to feel I am loved, to express affection…but my freedom and independence is just as important to me. Perhaps this means I won’t ever get married,or have kids, or my relationships will be of the non-traditional variety, or I’ll end up with a job that makes me a wandering nomad from time to time, but that’s OK. I find myself judged quite frequently for that aspect of myself, and the pressure to hide that desire for freedom, coupled with my natural distrust of other human beings until proven otherwise, has led me to seek out very clingy friendships and relationships. Yet, that very same kind of clinginess causes me stress and makes me unhappy.
Let’s be honest here, I lived with a roommate I didn’t really like or bond with for a very long time because I thought I couldn’t manage on my own, and cried and felt undue stress at the idea of being left to cope with living in a space by myself. This person was utterly toxic in my life, yet keeping that person around was less frightening than being alone. This is not the first time I’ve been through this scenario, and every time, once I deal with the shock of being left alone, I realise just how much happier I am. I’ve lived with ex-boyfriends and moved in with people I should not have because I felt like being on my own just wasn’t for me, and every time, I was shocked by the realisation that I felt freer and lighter when the person I supposedly loved and needed was gone. I didn’t want the person to be gone forever, I just wanted my own space for awhile. I never really knew that about myself. I like living in a world where there is a certain amount of personal space and freedom, and that’s balanced out by friendships and relationships that are truly important to me, not just having people around to have them around. I’m still an extrovert who gets bummed out if I don’t have enough social interaction in my world. Yet, I grew up valuing my personal space immensely, being able to hide out in my own room and “escape” from everything and everyone else. I thought that, like most people, I simply grew out of that, but I don’t think I ever did. I just told myself I *should*, because people have roommates, families, live together…especially in cities, people aren’t designed for personal space. But I like mine.
I’ve also come to accept a basic truth about me: I don’t like people. At least, I don’t like all of them, and during my time of illness, I came to see the idea of meeting and entertaining strangers as a drain on my very limited resources. It became harder to smile and appear charming in the face of people you don’t care for, or pretend to be interested in conversation that just *isn’t*. I don’t think it’s an accident that I’ve developed at least three strong friendships during the time I was ill, largely because it was the first time in my life I cared about meaningful one-on-one interaction with someone I suspect I might relate to, instead of “How many people can I get to come to my party?”. I’ve hosted a Meetup group for 5 years, and literally met thousands of people. Perhaps 20-30 of them have become friends; some of them have become my best friends in the world.
But, when I was sitting on the lawn talking about my childhood with my friend in Durham, or at a quirky coffee shop creating imaginary art in my head with a friend in Charlotte, or at a small dinner with 6 or so of my close friends in Atlanta, I realised how much happier and more content I was than at any of the bars or clubs or parties I’d been to recently. The difference was, I was really able to communicate and bond with people I truly care about, people who accept me and allow me to be myself. I didn’t have to flirt or accept and give insincere compliments, hug strangers, make small talk about “Where are you from?” and “What do you do?”.
I was telling a friend recently that I’d never been like that before. In fact, I’d had people end relationships and friendships with me over what was perceived by others as a disinterestedness in truly getting to know someone, and what I saw as “Whenever we turn everything into a group outing, more people means more fun!”. In some ways, my illness was stronger than my desire to be the centre of attention, to be the person that everyone looked at in a large group of people. I didn’t want to be looked at anymore, I didn’t want to have to meet expectations or offer meaningless social frivolities. I just wanted to be around people who understood, and really cared. My illness allowed me to see what life is like for people more introverted, more focused, less willing to engage in pretense and the attempt to “be seen and appreciated” than I have always been. At first, I was bored and depressed and hated it. I just wanted my old life back. As I started to get better, I started to see it’s one of the greatest gifts life could have given me. I value others so much more now, and learned it’s OK not to like everyone, and not to give a crap if other people don’t like you. I was reminded how authenticity was one of the most important aspects of my personality, and how often I’ve had to sacrifice that to please others or to be liked. I feel like it is a permanent change, that I no longer have the energy or the desire to do that. I don’t go to bars or clubs on Saturday nights anymore; I play trivia with my friends at a pizza place that doesn’t serve alcohol and closes at 11, so we sit on the bench in front of the building, talking and looking at stupid YouTube videos. And, strangely, I love it. When I am out of town, it is the thing I miss the most. It used to be something to do when there wasn’t a party to go to or an event to plan. Now, it’s something I look forward to doing.
I have changed and grown in many ways as a result of one of the most difficult periods of my life. I learned to let the self-destructive, attention-seeking side of myself go when it occurred to me that I wasn’t ready to die. I learned to appreciate people by admitting how much about my life I didn’t really enjoy, how much of my interactions with others felt forced and artificial. I’ve learned to balance the conviction that you have to appreciate today because there is no future with the idea that, in case I’m still around, I might want to make plans for my life 6 months from now. I’ve learned that living alone doesn’t mean being alone, and it’s far preferable to the stress of being around someone you don’t even like that much, and the negative energy they bring into your life. I’ve learned that substance counts, and I have a great deal of it, even though I spend a lot of time downplaying that aspect of myself. I’ve learned that feeling loved sometimes means someone understanding you enough to give you the freedom you need, and that showing you care about others means understanding the freedom that person needs. I’ve learned that it’s OK to say “No”, even if it makes you feel badly, because attempting to please others at the expense of your own happiness isn’t worth having panic attacks over. I’ve learned that while I don’t have all the answers to life, sometimes my intuition tells me everything I need to know about the world around me and the people in it. I’ve learned that I value my family for who they are, but it’s the friends who are like family that truly make me feel at home…and it sucks that those friends live in five or six different states, but it doesn’t matter much.
I’ve learned I’m stronger than I think I am. And, maybe, three years from now, I’m going to wonder what all the fuss and panic was about when I see a Wal-Mart, Target, or Kroger. I’m going to make changes between now and then, and I don’t even know what they are or why I’ll make them or if they’ll be the best choices…but I know I’m going to be around to make them. That means I’ve come so much farther from where I was this time a year ago, and although I feel frightened about the approaching summer, potentially going to Dragon*Con, or traveling, or just locking myself up in my room and focusing on work and making money, I somehow intuitively know I’m going to be OK. It used to be one day at a time in my world, and now it’s one week at a time. That is progress.