In the pep talks that I give to myself when I am ill, which has unfortunately been a substantial chunk of the last 5 years, and basically ALL of this past year, I try to remember that familiar feel-good saying, “every cloud has a silver lining.” I’m not sure it’s even known who said these words first, but when researching them to make my Etsy listing for the above, I discovered that the general concept of a cloud having a silver lining comes from the 17th Century poet, John Milton. In “Comus” he writes, “Was I deceiv’d, or did a sable cloud/Turn forth her silver lining on the night?” Milton would later go blind, after writing the above, but before writing his masterpiece, Paradise Lost through dictation. He was of the opinion that his blindness sharpened his verbal and poetic abilities. Talk about practicing what you preach.

I have had a bookmark for quite a few years that has a literary quote on each side. The Raymond Carver one I stenciled on my bedroom wall, “Woke up this morning with a terrific urge to lie in bed all day and read.” The other is from one of my favorite writers, Jorge Luis Borges, whom I only started reading in the last year. It reads, “I have always imagined that Paradise will be a kind of library.” As a literary buff and bonafide bookworm, I never thought twice about this quote beyond agreeing with it. I knew nothing about Borges’ life until very recently, having no idea how ironic this quote actually is: Borges said it after becoming blind himself. Borges was inspired by the way Milton perceived his own blindness, believing that no matter what calamity befell one, one must use it as best as possible. He called his blindness a “confinement,” but also a “liberation” because he was forced to invent and create in a different way, to approach his literary craft in a different way.

My own health calamity is a little more unpredictable and changing, not as fixed and final as blindness. But because of this I feel like I’m perpetually on a roller coaster where I’m supposed to get used to every single hill, valley, twist, turn, pull of gravity and bump as if each singular one of these is the way it’s always going to be. I try to get used to the feeling of the steepest, most terrifying hill only to be lifted up again into the clouds. This year has been incredibly challenging for me, as I can only call about 40 days out of 365 healthy ones, and even then, the experience of drug withdrawals can sometimes feel like another disease in itself. I have never worked harder at “keeping it all together” than during this year, because suddenly it felt like I had my hands in so many wonderful things and I didn’t want bad health to take them away like it has in the past. As many times as I had to hear my doctor say, “You need to rest, you need to work less, you need to be more selfish, how you take care of yourself now will affect your health later, you aren’t helping your body get better, you won’t get better this way,” I couldn’t listen. But there were many times in past years when I did nothing but rest, and I still didn’t get better; I got worse, so ever since then, I’ve adopted the belief that, well no matter how terrible this is, I want something to show for it, I refuse to stop until my body physically makes me. Of course, once upon a time, I took this too far…

In order to keep from slowing down, it seems necessary to hide from everyone what I’m actually going through, especially on an emotional level. I don’t want to feel more different than I already do, I don’t want to miss out more than I already do. And it’s denial, the “defense-mechanism of the illness” as Lawrence Durrell puts it, a compulsion to lie when you’re really sick because it’s all so catastrophic. I have always had a problem with opening up when it comes to difficult situations or feelings, particularly when it comes to my health. “Tell me what you’re going through, tell me what you’re feeling, I want to know,” but deep down I think, “No, you don’t want to know. You really don’t.” Because all it will do is make you feel sad and helpless. It IS sad and you ARE helpless. I am met with melancholy looks and sympathetic words. But sympathy has always felt like a pity party in disguise; I’d rather not attend. And yet, a few weeks ago, coincidentally, someone at a party said to me, “You look so beautiful, you don’t look sick at all. You must not get any sympathy.” That didn’t sit right with me, thinking that everyone around me almost can’t believe that I’m sick just because I hide it well, because some illness is hide-able. Maybe I do want some sympathy after all?

Sympathy requires the person doling it out to take on some of the burden, to try to understand the struggle. But passing on my burden to others doesn’t lessen it for me, and if anything it makes me feel more guilty. I compare a lot of things to math principles and scientific concepts, so I think of this scenario as resembling mitosis. One burden splits into two burdens that will each be exactly like the first, and they just keep multiplying into lots of burdens. And I hate witnessing this. To try to circumnavigate this passing on of the burden, I have tried instead to hand over writing I’ve done about the utterly horrible sick years where my body was perpetually deteriorating. The response to that writing? “I cried for an hour. I don’t know how you did it.” So, that’s kind of the same result. Or I get, “Gosh you say things in such a beautiful way” or “You should write a story about that” or “Your ability to describe emotions is amazing.” In other words, I get feedback as if I were brainstorming future literary material, not chronicling the physical struggle that is often my daily life. That doesn’t quite help me process it all either. In an effort to be more open about it, on this virtual paper, here is what I would say, if I were being honest, on any of about 150 days of this past year:

If I was lucky enough to sleep through the night, I am jolted awake around 7 or 7:30 with intense colon pain. I go to the bathroom. I haven’t had to set an alarm clock all year. I can count on that morning pain, day in and day out. I try to eat breakfast, but because food is associated with pain, it’s forced eating at best. I brush my hair, which comes out in clumps for the first two weeks of taking prednisone these days. It’s impossible to tell what’s drugs and what’s disease when it comes to what’s happening inside my body. The thing that makes eating easier is that taking so many pills on an empty stomach hurts and some of the pills taste like poison. So I take some medications from a pillbox that I’m outgrowing at 15 pills daily. I get nauseous every other day or so some weeks, feeling on the verge of vomiting for a good half hour, or at worst, an hour. Sometimes I bite my hand so that I focus on that pain instead. I probably go to the bathroom a couple more times. I put a garbage can right next to my desk and start reading email, working, managing, ignoring. I make a phone call and thank God that the person on the other end of the line can’t see me billowed over with pain on my bed. By lunch time I’ve bled internally enough that my legs feel like jelly because the muscles don’t have enough oxygen. Running errands like this takes twice as long because I walk slower. I have sat on almost every curb, stoop and bench in and around my neighborhood, waiting for my heart to catch up. Sometimes I get a headache, sometimes I collapse in bed because I just can’t stand up anymore, or even sit up. I get a little woozy. But I can’t take a nap because prednisone causes insomnia and my racing heart, both a side effect of prednisone and blood loss, prevents me from falling asleep anyway. I try to block out thinking about the horrible long-term effects of these pills because without them there is no short-term. I try to block out thinking.

That’s a smattering, a mere few hours. Sometimes it’s worse than the above, rarely is it better when I’m in full-blown sick mode. The key to getting through these days is the block-out-thinking part, which of course is not entirely realistic as I have to LIVE it 24/7 and there’s no real escape. The next best thing is to put myself on a kind of autopilot, a full immersion into the depths of denial, to think of it all as “normal.” To not contemplate how painful it all really is, both physically and emotionally. To forget that the majority of people in my life are not doing this, are not fighting their own body that is trying to kill itself. If I can keep myself in that state of denial, I can keep going.

Instead of turning to people in a time of need, I turn inwards. I think, I read, I cry, I write. Maybe these feel safer because no one else is affected but me. I can find wisdom and encouragement in the written words of others but don’t have to expose myself in return. I can love those writers and know that I will never let them down, will never make them cry, will never have to tell them I sometimes hope I don’t wake up in the morning, will never have to cancel, will never have to explain, will never not come through. Borges once said, “I have always felt that my destiny was, above all, literary; that is, that many bad things and some good things would happen to me. But I always knew that all of them, in the long run, would be turned into words.” Relatedly, in the fifth volume of her diary, Anais Nin writes, “I begin to look at what happens to me as a storyteller might look at it. What a good story it makes! I take my distance. I look at the dramatic possibilities. Try that. The depression falls away, you are changed into an adventurer faced with every obstacle, every defeat, every danger, but as they increase the sense of adventure increases too.”

I look back at this year and I am overwhelmed by both the bad things and the good things, but if I am to subscribe to this silver lining thinking, I should turn all of them into words, into art, into something. Transform the sense of confinement into one of liberation. With more skeptical eyes do I read these words of Nin, because it seems risky and irrational to treat “real life” as story fodder and dramatic material, without processing it as real life first. More than once I recall being what felt like accused of “You’d do anything for a story,” to which I responded, “No, it’s really just that I’d do anything. Period.” I don’t think far ahead enough in the future to really consider “the story” that I’ll be able to tell. The story is the logical aftermath, the residuum, what you end up with. But for me it’s all about the living, the experience, first and foremost. And that’s why it’s so distressing to handle “the many bad things,” the parts of this year when I was sick, because the experience is not enjoyable in any way, and living becomes living with a disease, every single day, tainting everything in the process. The lessons I learn, the story I’ll some day be able to tell? The journey to get there feels too long and painful to care. And yet, after taking inventory of this year, I realize that I have to care, because the “bad things” may never let up in the way I want them to. The bad may always number “many” while the good lag behind at only “some.”

So I must keep looking for Milton’s silver lining, for Borge’s liberation, for Nin’s good story.