Will You Still Love Me Tomorrow

It's happening again.


The slow descent back into the illness. Some illness. Don't know how it will manifest itself this time.

I felt it last night when I had plans with AC and wanted so badly to climb into bed at 8:30 instead of meeting her at Cube 63 at 8:30.

But I met her. After dinner, I went straight home and straight to bed at 10:30 on a Friday night.

Today I woke up with the headache and eye strain and nausea and lower spine soreness that characterized the early phases of pneumonia. But my eyes are twitching more. It's a little different and I still never know what is a warning signal and what is a side effect. So I wait. I went to 10:00am yoga and now I am at work.

I didn't think I was going to make it to work without throwing up. So nauseaus. So nauseaus. I had no food in my body but all of the smells on the way to the subway served to only make me feel more nauseaus. The smell of bacon wafting out of a diner. The smell of pizza as I walk by a pizzeria. The smell of hotdogs and other street food as I walk by a vendor. I love those smells. Those smells make me hungry. Those smells make me want all of those things all at once when I am healthy Briana, that is. Not today. I knew I had to eat so I got my safety standby - pb&j on whole wheat. I also got coffee to see if maybe that's what my headache is all about. I hope it works. I am drinking it like I used to drink beer when I first started drinking and hated the taste, little sips.

Being well when you are chronically ill is like being granted furlough when you're in the army. You want to taste, smell, drink, have sex, stay out all night, see everyone, eat everything, you want to cram your entire life into a few days. Because you know this freedom is fleeting. When you least expect it, even though you are always expecting it in that layer right below your conscious, you are kidnapped in the middle of the night in your sleep and you wake up in that other place, the place where illness reigns supreme and your body is once again your enemy.

I crave rhythm and predictibility. I crave warning. But it doesn't work that way. Instead of having the predictibility of the waltz, a three-step; this dance is impossible to follow. I am never out of the woods. If I could learn the steps, I would have half a chance. But I am never safe because the warning signals are different every time. The enemy never strikes the same way twice. So until it is at the point where I can no longer make it to work or make it out of bed, I don't call the doctor. I can't. I would be on the phone with him all the time. Compared to how I used to feel two years ago, I am always sick; I always feel like crap. Compared to how I felt two weeks ago, I feel amazing. People ask me how I am and it is such a loaded question. Even when I do feel well I don't. I am perpetually on the run from it and I have close calls and near misses and I can never fully relax no matter how much I disguise myself and distance myself she is always lurking closely nearby waiting to attack, waiting to win and I am always scared.

My life is shaped by dramatic highs and lows, near misses, tragic losses, obstacle courses, impossible climbs, roller-coaster rides, ecstasy when I can feel normal and be the person I used to be, victory when I wake up and love the smell of coffee and go on a victory run in the snow. It is exhausting. This isn't a way to live. My life is action packed. When people ask me what's been going on, there is nothing I can tell them that would mean anything in their world, no exciting job, no new boy, no crazy night to recount, but in my world, the world of the chronically ill, the twists and turns of my health are earthshattering and keep me constantly on my toes. I am never bored. There is always something going on. Just nothing I can share which make my victories like enjoying a cup of coffee, huge in my world, tantamount to a $10,000 raise in someone else's, meaningless and something I must keep to myself. If I recount the miracle of my pre-Valentine's Day run and how miraculous it felt, they look at me like I'm crazy, saying with their eyes, "uh ... you've run six marathons, why is that such a big deal?" Because the rules have changed. Because my body and I are no longer in sync. We have a very volatile relationship. Because anytime I can do something I used to do with no problem, without even thinking about it, I feel like a rockstar and I feel like it is a miracle. But no, according to what you consider new, nothing is going on with me.

Is it in Alaska that the native people there have over a hundred different words for snow? I think about that when I realize how few words I have to describe how I feel and how my new life is. I was trying to describe it to AC last night and I can't. Even with metaphor I can't. There aren't words to describe sickness and the unpredictability and the departure from reality and the not caring about things you've always cared about and being obsessed with every little twitch in your eyes or pain in your head or mistep you take.

How do I describe how it is to be a normal, pretty, healthy, fun, funny, smart, athletic, adventurous, laid-back regular girl which is still how I appear when I am not many of those things anymore? And when I told AC how sick I was, she didn't understand. She marveled how well I looked in the hospital when she came to visit. Part of that was my talent in putting on a good show. Part of that was the very close call, I had been told I had HIV and then told I didn't within a half hour. Not looking sick is a hindrance. People can't get their head around how I could be as sick as I claim to be and look as healthy as I look. Yeah I look good. Steroids make your face flushed and rosy. Immuno-suppressants make you lose weight and your skin glow. So is it really a compliment to tell me I look great? And anyway, what does that have to do with anything? It's like when people make anti-semitic comments in front of me and then I announce that I am Jewish. "Well you don't look it," they always say before apologizing.

The truth is that once death becomes more than an abstract notion and you can see it happening because you've had your nights where going to sleep you didn't expect to wake up the next morning and you have been told time and time again by various health professionals how sick you were it is hard to ever think about life or death the same way ever again. It's hard to feel immortal. It's hard to plan. It's hard to save money because why are you saving it when you know death is certain and may happen the next time you flare or get a related illness. It's hard to do anything besides what makes you feel good, when feeling good is a possibility. It's hard to do anything that makes you feel more bad rather than less bad. That might mean no cleaning the house and spending all day reading and writing instead. That might mean shopping instead of going through your already overloaded closet. That might mean ordering in instead of cooking. I am always treating myself. Before I had to justify it. Now there is no justification necessary. What baby wants baby gets. As outrageous, nonsensical, wasteful, meaningless as it may be. My Missoni dress being a perfect example of that. Or how I've stopped eating oatmeal for breakfast every morning and now eat cocoa krispies. If my body doesn't absorb nutrients why do I bother eating healthy? I love chocolate. Why not incorporate it into breakfast. And I never got the sugar cereals as a kid. Why not now? Why the hell not?

You see, I'm so exhausted, so drained from the emotional stress that I can't even finish this blog. I am tired from contantly trying to outsmart my body. I am exhausted from translating my state of being into something others can understand. I am weary from being constantly defeated in both endeavors. I want to curl up into a little ball inside my grey flannel sheets and cry myself to sleep at the injustice of this fate of mine. Or maybe a hot bath. First I will get something exciting for dinner. Maybe some brownies. Maybe a cupcake or two. Why the hell not. I am so exhausted I don't even feel like shopping.