A funny thing happened the other day. I can’t remember why, but I decided to browse through old notes I made while in the acute days of illness. Oh yeah, I think I wanted to see if I had written any journal-like chronicles of my suffering, in order to post here so people could understand what it was like. I didn’t see any at first glance – most of my notes consisted of supplements to try, and other avenues of healing to investigate. But among those, I found little snippets of insight into my life and illness, realizations about the bigger picture of what was happening to me.

Suddenly, and strangely, I found myself becoming nostalgic for those illness-ridden days. You see, in the midst of suffering, I was also making important self-discoveries and gaining inner strength. It brewed under the surface of my suffering, hints of it peeking out in flashes of insight, providing inexplicable solace from time to time. Not only that, but I had such hope sometimes. (During the times I could feel it through the despair, that is. I couldn’t always.) I frequently thought to myself, “If I could just get my health back…” What? Everything would magically be okay? I’m not exactly sure what I thought. But I was so hopeful for all the great things I could do once I was well. I had such zest for this possible, theoretical future life – certainly more so than I had pre-illness. Having your health stolen will do that to a person.

Anyway, my health did drastically improve eventually, for which I’m thankful every day. But you know what I found here within this health, in the aftermath of acute suffering? Drudgery. A whole lot of goddamn drudgery. That, and alienation. I no longer have close friends, or feel the camaraderie of sharing with other sufferers. I feel disconnected from my illness support groups, not sick enough to currently relate to everyone, but not well enough to relate to normal, healthy people. So, I basically feel disconnected from everyone.

On one hand, of course I am grateful for everything my recovery has brought me: the ability to do many things I previously could not do, eat things I could not eat, etc. I AM grateful to be past the horrid suffering which left me longing for death on a near-constant basis. However…I did not want to recover just to return to mediocrity and drudgery for the rest of my days, or sit here feeling alienated from the world because of my health experiences. Beyond the “OMG, I can eat a bowl of berries now without getting an excruciating migraine”, and “I can actually focus on something other than my constant ill feelings” and “I can’t believe I can inhale normal laundry detergent fumes without wanting to pass out and die,” there’s an anticlimactic and somewhat jarring  “Oh shit…THIS is my life?” Now that I’ve sampled the underworld in the form of chronic illness, and re-emerged into real life, once the shock wore off I could see everything wrong with it – like all the bad decisions I made which culminated in the subpar existence I dwell in these days.

It’s not all bad. I savor the gains I’ve made like a person set free after a prison sentence. But the rest of it? I’ve come to realize that I’m not being true to myself in my life. One example is that I’m wasting away working a job I hate, eroding my spirit little by little. There are other examples too numerous to list. This is unacceptable, but I don’t know how to change it, a thought that leaves me vaguely miserable and anxiety-ridden.

To solve the job issue, I’ve read several articles and a few books about mid-life career changes, and following your calling in life, but those texts don’t feel like they were written for me. They were written for people who already had decent careers for a couple of decades. People with savings accounts, and spouses to help them in their daily lives. They weren’t written for people who squandered their potential, had a baby too young, wasted years in bad relationships, then became ill for years while whatever skills they learned in college grew rusty, and technological advances rendered them nearly obsolete. How can people like me, who work like dogs and live paycheck to paycheck, aspire to such lofty goals as career changes, especially when there is so little time, money, and energy leftover once responsibilities are fulfilled? Not to mention, even if I had the time and money to, say, return to school, what about my ailing brain? College requires intelligent thought, which can be scarce in these post-illness days. Me not smart no more. But that’s a side note I won’t bother with for now.

So anyway, within my own private nightmare of illness, I had breakthrough periods of hope, of inspiration. My goal was to grow and heal…and I did! What a miracle! But here I am after the novelty of healing wore off, staring in the face of the drudgery and mediocrity that is eroding my spirit again, wondering “What the hell am I doing?” and “What now?” Hence my nostalgia for the illness days, which contained the ability for me to hope and dream without the necessity of taking action. After all, I was too sick. Now that I’m less sick, I have shit to figure out.

Part of me feels guilty, like I’m taking life for granted. Do you know how desperately I longed to return to my normal life, drudgery and all? How many others would long to trade their suffering for my life, problems and all? So many, I’m sure. But now that I’m here, it’s not good enough? Like, who do I think I am, anyway?

I think what happened was that getting sick stripped my life bare, exposing all of its problems so clearly. I realized during these illnesses (MCS and FQ poisoning), as I was steeped in fear of my terrifying symptoms and my uncertain future, that this fear was not confined to my illnesses; It had been an underlying factor permeating my existence since as far back as I could recall. I had been scared of everything my whole life. I was scared of showing my true self to others, scared of failure, but also scared of success. (That realization was a huge shock). In short, I was scared of living. And in hindsight, I could reflect back on my life and see how most of my life choices were actually rooted in fear. How I held myself back for fear of failing, and fear of others discovering I was unworthy. Unworthy of…what? Who knows. It’s like I felt unworthy of life in general, but functioned for years and years completely unaware of this, as well as my other fear-based patterns. Getting ill forced me to recognize this, by so desperately longing to return to life, but realizing the way I had been living all along had actually been harming my spirit on a deep level. And now that I’m better, I can’t go back to my former state of existence, unconscious of my own destructive patterns. But what should I do instead?

I have no idea.

As I said, there’s no instruction manual for re-entering life after two chronic, invisible illness which are unacknowledged by most people, aware of your destructive patterns, and living paycheck to paycheck. I literally have no idea what I’m doing, or where to go from here, alienated, shell-shocked, none of my old paradigms working any longer.

So, what now? I guess I’ll just carry on until something comes clear. Maybe if I try to live more fearlessly, being true to myself in the process, opportunities and ideas will more naturally open to me. I hope so, anyway, because that’s all I can think to do. Surely I won’t spend the next several decades functioning in this state of limbo…will I? At the very least, I would love to figure out how to reconcile gratitude for recovery with discontent for the conditions of my life which are making me unhappy. It feels like a contradiction, even though I guess it isn’t. It’s simply being aware of gratitude while recognizing that I can’t return to the dysfunctional ways I used to live, and not quite knowing what to do in the meantime.

I guess in this way, recovering from illness has been like a metamorphosis. Like emerging from a cocoon, remembering the caterpillar days, but not yet knowing how to fly. I hope to someday learn…or at least remember that underneath my troubles and uncertainty, a hidden but powerful, instinctual part of me already knows.