Throughout illness, I could not simply or efficiently answer the question I was so often presented with: “how are you?” I’m sure the answer seemed like an obvious, “not good.” To the outside eye— I was undeniably amidst a shipwreck. I was skinny and pale and frail and depressed and being told there was probably no way out. But “not good” didn’t resonate—it wasn’t true. The experience of being sick felt (feels/felt/feels) dynamic. I was learning indispensable lessons. I was developing as a human, deepening as a spirit and as a creative. I was gaining a wealth of knowledge and a sea of love and compassion. How could I be miserable about such a beautiful makeover? I was very hopeful—always, almost painfully hopeful. I once read that “hope is the opiate for the truly hopeless.” I wondered if that was me. I still wonder if that is me. Maybe it is, but it feels more true to say that it has been light and dark all at once. All of my life, maybe—I have felt the lightness in equal proportion to the darkness. Amongst these monumental inconsistencies was the desperate loneliness I felt while absorbing more love than I even knew existed. A love not only from my fellows but also from myself. But what brings me to this post is not necessarily the reflection of the past (although, I am very much reflecting) but the feeling I have presently: Why after getting so much healthier do I still sometimes feel so completely heartbreakingly alone?
I had never felt more alone in my life; I had never been more surrounded with love. The two have sat side by side for the last three years fighting for attention. Well which is it—are you lonely or grateful? The gnawing ache of isolation— the total seclusion— paired with a swelling of people and homemade food and an abundance of affection. It was (is/was/is/was) a loneliness that felt like punishment, that took a chainsaw to my heart, slicing away the pieces that felt uplifted and loved; It was (is/was) a groundbreaking, fascinating joy and comfort I experienced as a community of protectors gathered around me. There was an army gathering for ME, with my life as their cause. But what was, in some ways, even more profound, was the experience of me leading the army. All of those moments in the day when no one was there holding me up, I was handed an opportunity to hold myself. In my insomnia ridden madness, when my portion of the world was silenced and inaccessible, I got to know myself. I got to learn to have a relationship with myself thus altering my life forever into a more comfortable existence. And yet, knowing myself, loving myself, and experiencing a hearty love all around me didn’t completely cure the loneliness that comes with being sick (sick/ human/sick/human?).
I spent months—maybe a year, who knows—lying in bed during the sun-drenched hours. The hours one was “supposed” to be outside. The majority of my days were spent in one corner of my bedroom locked inside of my body. My bed had lost the value it held in comfort at that point. A bed is only exciting, cozy and comfortable when you aren’t forced by some tyrannical bacteria to be in it all of the time. In a dire search for entertainment, I listened intently for every rustle in the trees and for the intricacies in the songs the birds sang. I know it’s 2017 and there are so many options for entertainment and it seems ludicrous that I would have to resort to the noises outside of my window to do the trick, but, at my sickest, I couldn’t tolerate the dynamic, intrusive noise of the television, I was too tired to read, and I was in too much pain to sleep. Not to mention, that I couldn’t emotionally tolerate the television, I was unable to stomach the effortless joy and beauty that sitcom characters presented. Watching television added to my loneliness—it was a reminder that life was happening and I wasn’t invited to the party. It was the same when my neighbor had band practice. The mysterious band practice always happened in the evening. The sun light would be slowly departing —a measure of the time, of how little I’d done that day, of whether or not I had eaten anything, of the fact that bed time was coming and I wouldn’t be lucky enough to actually fall asleep. An aggressive depression barged in, another day gone and wasted. At the center of my depression were the faint sounds of drums and guitars— my peers able to express themselves creatively, easily taking part in their preferred art form. Their music mocked me. Band practice would finish, the sky would be midnight blue, and I would be in the same—or similar— position that I started my day in. Closing my eyes made my heart race and dropped me into my body in a way that increased discomfort so, like an infant, I looked at everything. I looked at whatever the moonlight revealed to me outside of my window. I looked at the colors in my room, I listened to audio books about self-compassion. I heard my roommate get home verging on early morning hours after a full day of not being home. I could do that once. I could come and go, taking for granted the kind of energy it took to “come and go.” I could get home late. And I could easily and organically just…fall asleep. I missed those days. My peers were at work, at yoga class, hiking, on set, traveling, at lunch dates and coffee dates, dancing, going to the movies, and I was still in bed. Those were the loneliest days of my life. Even when i went out, I was separate. I was more tired. I was too tired to converse. That kind of fatigue locks you in your body, in your bones into a sort of quick sand of self-pity. To look at the world and not feel a part of the world. I felt like I was behind one-sided mirror. I was able to see everyone, living, doing just fine, but I was alone, no one saw me, no one cared because I barely had the energy to speak up: we were separate, you could never know how bad I felt.
And yet, people called everyday. Countless people were willing to help me. People brought me food, they sat in that bed with me, in that corner of my room. My friends skyped with me, my mailman delivered multiple care packages, friends were willing to listen to me, to hold me while I cried. My boyfriend never once complained about all of the laying in bed we did—in fact, he let me know that he wanted to lay in bed with me because he was WITH ME. One of my best friends ran a fundraiser for me. People donated. People that I barely knew jumped on board to warrior for me, donating consistently, sharing on social media constantly. The love was ENDLESS. I was put in touch with person after person after person who also suffered from illness. And, in speaking and laughing with one another, loneliness often evaporated on the spot only to creep back in later. My dear friend came to Southeast Asia with me and took care of me for two months—feeding me, watching movies with me, healing with me. Another friend flew a more manageable distance across the states to wheel me to and from doctor’s appointments. I was written letters, poems, emails and texts all with the same sentiment: You’ve got this, and we’ve got you. My roommate whom I envied for her energy was a house of compassion and cheerleading. And,as for myself, I was growing more and more in love with myself everyday—not in a narcissistic pseudo-love way but in the way you innocently come to love a child. As I got to know myself, I got to forgive myself and have compassion for myself. I had ignored me for far too long and she was fucking screaming for some attention and acknowledgement. I met myself in person, and I wanted her autograph.
And with all of that experience, all of that love thrown at me in an almost reckless way, (we are talking love on top of love on top of love from all ends of the Earth: Need more? Have more.) I still felt (feel/felt/feel/felt) lonely as fuck. It’s not that I feel sick and separate anymore. I feel entirely human again, albeit a bit tired and with maybe a smaller bandwidth than others. But I’m certainly not locked in a corner of my bedroom; I am cruising through the sunshine on foot. I’m cruising lonely. And loved. People kept telling me while I was very sick that no one could ever know or understand what I was feeling in my body. Because it’s impossible—the feelings exist only in my body, I can’t show you or share with you, we are separate and always will be. I can write about my experience and some people will relate but it remains my own. And so perhaps it’s just lonely to be human. A biological impenetrable wall. And maybe pre-illness, I was fighting that reality. I so needed “the pack,” I needed us to fully get one another and be together and do it together, and understand each other. I took no comfort in myself. I’m still sad that this experience of illness has been mine and mine only—that no one will ever be able to know all of the precise obstacles I had to experience through illness; and that I will never understand the precise obstacles you had to experience through illness or whatever you’ve gone through. And there we go again: we are all having the same experience of individual experiences—we are all susceptible to be misunderstood. We are all alone, therefore we are never alone—we are one.
Fun and love and a broken isolation barrier,