The Symptoms, Part One: Depression

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I sat submerged in the bath water.  The bathroom was dark and quiet, lit only by one large, flickering candle. My face dripped with sweat from the steaming hot water infused with epsom salts. I was motionless. Only my eyes shifted, taking note of my surroundings— the blue walls, the dancing light, the sparkly new bathtub—I worked hard to have my old one replaced because it presented with moldy spots, and as a person recovering from Lyme disease, the sight of mold scared me— and the water. I noticed the still water, and it was calling me to go under, go quiet, go completely still until my heart stopped beating. I stared at this element that I once found harmless and enjoyable, and how weird that I suddenly couldn’t see any other use for being in the bath other than it being the thing that assisted in my death. Why hadn’t I noticed that before? It seemed so obvious. How easy and seemingly peaceful it would be to just go under water and stay there. All of the hell I was living would stop—no more doctors, no more pain, no more fear, no more needles, no more uncertainty, no more isolation, no more crying and staring out of the window next to my bed, no more HOPING, and no more being let down. The temptation was great. I was spiraling and then suddenly I gasped because I had stopped breathing, and I pulled myself up to sitting. The water rippled with force and I frantically pulled the drain open and jumped out of the tub. The appeal was so great that I thought I shouldn’t use a knife or get in the car for the next couple of days.That night I became  intimately acquainted  with the  profound uses of everyday appliances. And I needed to protect myself.

That’s the type of depression that taunted me during my sickest year and a half.  In the moments that symptom flare- ups made death seem imminent, I would be almost relieved, “good. let it be over. I don’t want to live like this. This is not a life.” Sometimes, I hoped I wouldn’t wake up in the morning. It felt like too much work just to stay alive. Lyme depression is two-fold and a real mother fucker. First,  Lyme is a neurological disease—that means it’s a disease in your brain. That means that anxiety and depression are a SYMPTOM. Second, along with the depression and anxiety, you’re hit with a host of other symptoms. For me, I had extreme fatigue, insomnia, terrible physical pain, loss of appetite, hormone and thyroid dysfunction, and  brain fog…just to name a few. So, all of the things I’d generally use to fight depression like exercise, socializing, working hard, food, books, creative outlets, spontaneity,  or vacation also got taken off of the table and I was left isolated, broke, and painfully under slept. It’s common knowledge that the experience of being home sick with a cold or the flu can make someone a little batty. Now think about that experience on repeat for many weeks/ months/ years, add A LOT more symptoms, and then remember that you CANNOT sleep. Sound like hell? It is. I was in hell. As a person in the Lyme community, I hear it all. I hear about the deaths that are a direct result from Lyme. I hear about people getting cured. I hear about the seizures and the fainting and the permanent brain damage, and I hear about those whose lives will be forever better because they fought and prevailed. I hear the cases that are just “mild” but so disruptive. And I hear about the people who kill themselves—there are more than you’d like to believe. It doesn’t surprise me. It was so real for me. It’s very hard to want to live when there is a disease in your brain affecting how you think and when most of what was previously enjoyable about life gets hijacked. Lyme disease pushed me right to the edge. For some reason, I got willing to turn around and fight the wind, and LOVE is what pushed me along.

I had met depression earlier in life in more manageable doses. My attempts to harm myself in the past were half-assed: In high school, I tried to cut myself with a metal nail file —I quit as soon as I broke skin, I tried to be bulimic in middle school, but it took way too much energy to force myself to puke,  and, as a teenager, I took a lighter to my skin every once in a blue moon to make the mental anguish quiet down. Yes, I liked forcing my brain to redirect its attention to physical pain and off of my thoughts. But, in the end, I LOVED being alive. Yes, there were moments of serious darkness, but, most of the time,  I was excited about life.  With Lyme, I didn’t feel alive. Everything I loved about life felt like it was taken from me without my consent. There was no escape from the mental or the physical pain. It was prison.  I had *very sparingly* comforted myself  with the idea of suicide in my earlier life—I’d remind myself that if my depression or anxiety got bad enough, I always had an out, but it never got bad enough. It never lasted long enough…not until illness.

I had been sick for about ten months before I started losing hope. It was when I stopped sleeping in September of 2014 that I spun out of control. It went on night after night—adding up to 50 or 60 sleepless hours at a time. The relief came in very small doses—maybe 3 hours of sleep in a row—never a full nights sleep. I was desperate. My eyes burned, and I was driven to tears throughout each day. I took many variations of sleeping drugs—most didn’t work, and two of them made me more depressed. More emotional pain would cause less sleep which would cause more physical and emotional pain and on and on and on the cycle went.

One October day, I sat on the bottom step of my staircase trying to execute the simple task of putting my shoes on. Something that I used to do in less than a minute multiple times a day was now a terrifying, olympic- style task. For the gold, all I had to do was put my fucking shoes on. But it was so hard—I was so tired. I took a deep breath and slipped one foot in, methodically tied the laces and then paused. I took another deep breath and did the same on the other foot—the last bunny ear went through the hole, I pulled tight and PHEW, I just sat there. I couldn’t move, I had exhausted myself. The roaring sadness was called from my gut and rose up through my body and tears choked out, one after the other. I just needed to stand up and leave the house. Anger struck.  I was enraged with myself, “how the fuck is it possible that you can’t stand up. STAND UP. STAND UP.”  I wanted to drag myself across the floor by my ponytail and beat the living shit out of myself. And that thought devastated me. The desire to harm myself, the self-loathing I was feeling became so unmanageable. I wouldn’t get well if I kept it up.  I needed help.

That  Thursday night, I decided I had enough. No matter how tired I was, or how sick I was, I was going to go to show up at the Hollywood Mental Health Center at 7:30 am the next day—Friday. It’s where my insurance told me to go when I called hysterical.  I crawled out of bed with blood-shot eyes encased in dark circles and willed myself to get ready— put on a sweater and some shoes, grabbed my insurance card and just went. I hadn’t been in therapy for almost a year, and I certainly was not on any anti-depressant, I was free-balling, trying to be “strong,” and it obviously wasn’t working. It was a cold, foggy morning,  and I was  NOT drinking a coffee near a fireplace. I was shivering on a long, scattered line  with Hollywood’s homeless population.  I kept my head down and my nose tucked in my sweater because it smelled, and I was too sick to deal. The man in front of me kept hacking up phlegm and the guy behind me fluctuated between nodding out and jarring himself awake with the sound of his personal cocktail of snore and snot.  Goddamnit, this is not my shining moment, I thought. When I looked up to determine how much longer I’d have to wait, I fucking saw someone I knew. Not a friend—not yet— but an acquaintance I had met a couple of times through friends.  I was painfully ashamed—so ashamed that I considered leaving right then. I couldn’t be seen in this place. I was supposed to be the girl who had it together, but  I couldn’t justify leaving—it was too dangerous, my life depended on what came at the end of this stupid line. He, unfortunately, spotted me, and he came over to greet me like it was just some normal morning. I was so sick I felt like I was dreaming, and he was bright-eyed and bushy-tailed, “Hey, are you ok?” he asked. I acted surprised, “hey, whoa, crazy running into you. I’m uhh. I’m OK, yeah. I’m actually just considering leaving.” Yeah, Jack, play it cool on the line at the Hollywood Mental Health Center lol. His face was compassionate, and  he told me—point blank— to stay. He was the familiarity I needed to get through that morning, and he was so kind to me.

I took a seat on a plastic orange chair in the waiting room with the rest of the early morning crazies, and, for some reason, I told my new friend what was happening in my head and in my life. I had nothing left to lose. I mean, how was I going to get around the fact that I was spotted at the Hollywood Mental Health Center at 8 am on a Friday morning—sober.  Only desperate people do shit like that. He listened intently and casually said, “I have a therapist and she takes your insurance, and I respect her a lot. She’s well educated and no joke. And you won’t have to do any of this nonsense.” A gift from the fucking angels, “Are you kidding me?” I said, “Insurance wouldn’t give me any therapist’s names. They just told me to come here.” “Oh yeah, I know,” he said with an eye roll, “her name is Claire. Call her, she’ll be good for you.”  I took her info and waited out my turn in the clinic because I was trying to cover my ass from all angles. If Claire didn’t work out, I needed something else in motion.

I called that day, and she got right back to me. It seemed like one of the first times since I had been sick that a medical professional got right back to me. And it saved my life. It was all of the hope I needed that day. That week. The first time I saw her, she promised that she would have my back—that even if insurance failed, we would be able to work something out. I’ve been seeing her twice a week, for free, for almost two years. Insurance never failed. Her office, her familiar face, her kindness, her insights, and just the simple consistency salvaged what was left of me.

I sat in Claire’s office last night crying about how far I’ve come, how lucky I feel just to have an appetite. How lucky I feel to be able to hold my head up. She wrapped up the session at minute 49 instead of 50 so we could “talk about a couple things.”  She said, “I don’t know if you noticed, but I’m pregnant.” I took a moment to congratulate myself on “being right,” because I had a suspicion she was pregnant and THEN promptly congratulated her. She spoke directly—her maternity leave will start in March, and she’s taking six months off.  She will no longer be working in the office where I see her—she will have a private practice and not be accepting insurance. She might do sliding scale with me if I need it, but, in the meantime, she will help me find someone new. BUMMER.

I started writing this a few days before I got the news and I’ve come to realize in that time just how much I credit her with keeping me alive/afloat during the last couple of years. The magic is this:  Just as I NEEDED her in the moment she came into my life and just as I needed her for the last two years, I am now perfectly capable and ready to let go of her. My need is not what it was. I AM alive. I AM afloat. I am so much healthier, in mind, body and spirit. She watched me fall completely apart and slowly reassemble the pieces—sometimes finding new, shinier pieces while throwing away the old ones. And how amazing that I feel ready to part with what we had. Yet again, it is proven to me that I CAN trust the Universe.

I think more today about how grateful I am to have some sense of myself back. I am often excited about life again. The days where I “just can’t imagine another day” are fewer…much fewer. Actually, they’re rare. But for a while there, I was just holding on and hoping it would pass reminding myself again and again that I was willing to do one more day. I was willing to do another hour or minute while I took care of myself and did the next right thing. I was willing to keep swimming and not let myself drown. And I was willing everyday until I got here:

Today I woke up at 6:30 am after about 7 hours of uninterrupted sleep, drank celery juice, drank some tea, read some spiritual stuff, and then STOOD IN LINE at the Chinese consulate to pick up my visa for an upcoming trip. And I was grateful for that whole hour-long wait—that line was glorious.

With Fun and Love,

Jackie

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A Note for my Caretakers

caretakers

Dear Caretakers,

I imagine that this will be the first of many letters and many conversations between us. I’m starting here in a seemingly distant and formal way  because I’m not strong enough for the more intimate teary-eyed conversations right now. I’m also unsure of who needs to read this letter, and I want to give each and every one of you an opportunity to know that you are seen. As I ascend to wellness and the fog is slowly clearing, the vast impact my Lyme disease has had is coming into focus. I look around and I see many faces who have fought with me, and I have no idea what your experience has been, how hard it might have been for various reasons— I never asked. I’ve counted 20 of you who were very close to me over the last three years— 20 of you who I consider to be my main caretakers. 20 of you who were present for much of the suffering, many of the needles, too much of the heartbreak and all of the unthinkable need I was experiencing. But that leaves out maybe 200 people— or more— who donated, prayed, tracked my progress on Facebook, or worried about me. This letter is for all of you, whoever needs it: those of you who fought with me on an almost daily basis on the front lines, those of you who stayed back in the trenches gathering much needed supplies, and  those of you who prayed from your bedroom.  You were not my cheerleaders— you were my ARMY. I write every week about my story—my personal struggle with Lyme disease, stored trauma, and chronic illness. Yes, I often touch on how grateful I feel to have had the most compassionate army of people surrounding me, protecting me from all angles, but it’s come to my attention recently that you have been at war, too. This isn’t just my story—you’ve had your own journey watching someone you love suffer and fight for wellness. And no matter what part you played in this particular journey, your feelings— whether past, present, or future— are valid.

I can empathize—I’ve watched all members of my immediate family,  suffer for most of my life, and I’ve remained unable to do much of anything to help. While I have seen physical illness take hold of people, my family mainly suffers from addiction and mental illness—heartbreaking diseases that impact all surrounding loved ones. Addiction is called a “family disease” for a reason—the powerful current ripples out larger and larger often affecting generations of people whether they’re drinking OR NOT.  People suffering from diseases like these tend to be under the delusion that no one else is affected, that no one else could possibly be in the kind of pain they are in. But I can assure you, there’s PLENTY of suffering to go around. And it’s that type of thinking, that you’re not allowed to have feelings because you couldn’t possibly be suffering more, that prolongs the effects and keeps the current going strong. For a long time, I didn’t let myself really experience the hurt and abandonment I felt because I just assumed that my father suffered more than I did. He talked often and loudly about his own fucked up childhood and made it clear that my own was a cake walk compared to his. I have no idea if that’s true. But I watch people tormented by that voice all of the time—it says, “oh, but my father had it so much worse than me. He was abusive BECAUSE he was abused so I should just be grateful for what I got.” Or, “My mother was the one who suffered in her illness, I can’t possibly make that about me.” It seems like a very compassionate and empathetic voice but really its DNA is that of martyrdom and martyrdom is the tidal wave on the horizon preparing to wipe you out. IF that voice is active around my Lyme disease, if you are one of the 20— or one of the few hundred— and you have suffered through my illness let me just say your pain is valid, your fear is valid and whatever you experienced or begin experiencing is 100 percent valid. I’m not delusional—I’m not saying that Facebook friend #427 is wildly affected by my Lyme disease and needs to seek counseling. I’m just saying that whoever you are and however you’ve been affected—I hope that you have given/ are giving yourself an opportunity to feel it.

I can’t imagine  what it must have been like to be with me every single day through such horror, so many breakdowns, and so much illness. I have no idea what it was like for you to listen to me talk about my own impending death on repeat. Or what it was like for you to watch me go from excited about the full life I had in front of me to bed ridden and in tears every single day. I don’t know how it felt to lose your fun, reliable and available friend. I don’t know what it’s like to care for someone at such a young age, to not know if they’re going to get well and to be terrified to lose them. I don’t know what it was like to stick me with needles while I yelled out in pain, or  what it was like to leave my house when I so obviously didn’t want you to leave. Or how painful it might have been to hear me talk about how suicidal I was or how much I hated myself for being sick or how much I just “couldn’t do another single day in my body.” I imagine that, at moments, I may have felt safer in my own body than you felt watching me—I always held some sense of knowing that I was going to be ok (one day), and you might not have had that. Maybe you were scared to leave me alone, maybe you were scared to hang up the phone with me after I expressed so much pain. Maybe you’re scared that I’m going to abandon our friendship or relationship now that I don’t “need” you anymore. Maybe you’re scared that I’ll forget about you. Maybe this experience kicked up some old experience you’ve had with illness and death in the past or maybe it’s scared you…maybe now you know too much about the in’s and out’s of illness, fucked up doctors and how the medical system doesn’t EXACTLY have our back. And maybe you’re fucking mad at me. I don’t know. I know that I’m incredibly grateful for every single moment that you loaned your hearts to me, and I know that your love has altered me forever.

You people have inspired me every single day to be a better human. You have taught me through your own kind hearts and incredible efforts how to show up for the people I love. I am grateful for each and every thing you did for me. For you who held me day in and day out, always believed in me, and made me feel beautiful when my lips were purple and I was under 100 pounds. You who flew around the world with me to care for me while I got Ozone therapy. You who put me up in Florida and wheeled me around Disneyworld so I could have a day of magic in the midst of shit. You who sent me care packages, called, and texted endlessly. You who made me fundraisers and rubbed my body when it hurt. You who changed me into pajamas, who helped me get up stairs and hills, who brightened up my day with smoothies, food, and laughter. YOU are my fucking heroes.

I sincerely hope that you’ve gathered your own support through whatever journey you’re on—your own army—and that, if you haven’t, you begin to get help now if you need it. This is not just a message about my Lyme disease. It’s also a message to say that no one gets left out of life’s obstacles. Pain is pain—it’s relative and credible no matter what. And while I’m not particularly ready to counsel with you on how the past three years have potentially hurt you, I do want you to know that you are in my thoughts. I hope you know that I think of each of you everyday. That I know I couldn’t have gotten well without your endless support and love. I hope you know that I’m not going anywhere, and that now we get to do all of the fun things we’ve been planning for the last three years. I hope you know that every single hug, every text message, every phone call, and every time you held me while I sobbed, screamed and cried took me one step closer to health. And please know that as I heal, I imagine all of us healing together.

With Fun and Love,

Jackie

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East Coasting: A Photo Essay

Ian and I travel

Following up with last week’s post, this is an update of how it’s been going on the East Coast. In summary: better than expected! I’ve been almost myself. It’s been exciting to watch myself do a lot of the things that I couldn’t do even six months ago.

Getting off of the plane last week, I walked right past the wheelchairs and smiled. I didn’t just not NEED a wheelchair;  I HAD ENERGY- like plenty of it. Ian and I went to sleep at my Grandmother’s that night. Oma came out to greet us on the special corner where her home sits in the urban sticks. The corner I played on, ate Mr. Softee on, talked to all of the neighbors on, hung out with Alley (our childhood dog) on, and eventually departed on. It’s the corner I did all of my leaving from. Every time I got on a plane, it was from there, a diagonal shot from the front door to the cab, I said goodbye. When I moved to Hawaii, when I’d go home to Hawaii and eventually LA- that’s where I said goodbye. I’ve said countless hellos and goodbyes on that corner. It’s the corner that holds all of my “I love you’s.” I’ve said those words so many times right there, I bet the concrete holds some of my heart.

Ian and I got out of our cab and I said it again, “Oma! You’re so little. I love you. I’ve missed you.” Of course, even at midnight, Oma had food for us. It’s VERY hard for her to understand the extreme diet I have. I mean she’s 85 AND German so to her being gluten free, sugar free, and dairy free means I eat whole wheat tortillas, honey nut cheerios, and “those hairy fruits I bought for you- what are they called- kivis?” My heart really swelled for the effort.

I asked her to take a picture with Ian and she yelled at me. Then later, apologized profusely because she didn’t realize I wanted a picture of her AND Ian, “Oh boy, I hope I didn’t offend him,” she said. I got one anyway.

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We went to Lyme, Connecticut the next morning. That’s right, Ian’s family is from LYME, and, yes, that IS where Lyme Disease gets its name from.

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I imagine that photo above is what it would look like if we traveled together. I took this photo so the paper is merely a prop, BUT I was totally reading it at some point.

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At the Lyme Beach Club, Ian taught me how to catch crabs. I squealed like a scared little shit, but I got a great photo.

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We ate THE BEST Lobster rolls at this joint, and RANDOMLY this little New England beach town joint had GLUTEN FREE rolls. Very exciting.

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We took Amtrak back to Manhattan in the rain.

In the heat of deep Brooklyn, we took a walk and stopped to cool off like a couple of NYC kids. Ian found White Castle super entertaining. We consumed none of their food FYI. Ian left for Germany a few hours later, and we said our goodbyes and “I love yous”  on that precious corner before he got in a cab.

That evening, Juliette and I reunited and did what we like to do: we ate some real fucking food. Well, we ate real food that Juliette crafted masterfully for us in a Brooklyn apartment with the perfect view of NYC.

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Michael, who just so happens to live in Oma’s neighborhood came to hang the next day. Michael and I worked together on a feature film 10 years ago. Reminiscing about our time together and making new memories, we laughed and laughed AND did a photoshoot.

I got to spend time with my Aunt and Uncle. I haven’t seen them in over two years, and FINALLY, for the first time ever, I saw my Uncle’s band, The Smoking Gun, play in the Hampton Bays at this small-town, water front bar and grill. My Mother came out, and we DANCED. You guys- look at me –  Killin’ it with the healthy. My Uncle’s band was so good. To be honest, knowing how talented he is and what kind of music he likes, I thought I was going to get stuck listening to some eccentric jazz music which I WAS NOT excited about, but I was totally freaking wrong. If I had known how much fun it was to see them, I would have gone about 10 years ago. My Aunt showered me with gifts and my Uncle showed me 600 photos from their recent trip to Peru and Ecuador. At photo 200, I was sorry I asked to see any 🙂

Back in Brooklyn, Jessica came to visit me. My oldest friend, and my chosen sister, she loved on me for 2 days. I forced her to do my hair for a few hours and cuddle me which she HATES. Jessica also hates sleeping with me because I like closeness and I’m a mover and a shaker. Also, I talk in my sleep and stuff, but she slept with me anyway – with a giant pillow between us so she had her own space.

In an attempt to throw some shit away at my Grandmother’s, I started taking a trip down memory lane. AKA: MY HORRIFYING PAST.

First of all, that photo of me in the red sunglasses was NOT TAKEN ON HALLOWEEN, nor was it a “joke photo.” That’s just how I dressed. Also, it is a representation of how hard it was to take drunk selfies before the iPhone. That upper photo pretty much represents me as a teenager- drunk and peeing and pouring shampoo on my dear friend who was stuck in the bathtub? And lastly, I graduated from High School which is almost shocking considering that looking at my report cards, I pretty much did poorly ALWAYS in EVERYTHING except drama. But I celebrated graduating with my tongue out – of course.

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Pretty normal. Check out those tights. They’re for 80 year olds- just looks like I have a bunch of sagging skin or something. Jessica calls this my young “stripper pose.”

And also just the proof that my Brother has disliked me for a very long time.  “The Easter Bunny That Ate my Sister” is a 10 page intricate story WITH vivid illustrations. “I wondered why the Bunny ate my sister and not my pet snakes or something,” he writes. Gee, I don’t know, it’s YOUR STORY, and it could have gone down however you wanted.

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I found this book in the very same box that held my parent’s wedding album.  So that was funny.

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And this is what I’ve mostly been doing the whole time – hanging with my childhood “best friend”/ “daughter”/ “baby”/ “Victoria”/ DOLL. Nothing weird here, guys. Her eyes just look weird because I gave her “pink eye” like 20 years ago and then didn’t actually know how to fix it, but she’s doing great otherwise. SUPER NORMAL.

Check me out, living life and stuff.  Just a few more days of New York loving then another “I love you, Oma” on my home base corner and off to Los Angeles for IVIG treatment number 4!

Fun and Love,

Jackie

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Failing Better: On Imperfection

perfection

May 26th, 2016:

Melissa: I just want to get an A+ at life. I want to be perfect at everything and for everyone.

Me: I’ll give you an A+ when you can accept yourself in the moments where all you’ve got is a D-

Melissa, if she knew me better, could have retorted with the cliche, “you should practice what you preach.” But since she doesn’t, I let her assume that I do imperfect, perfectly. It’s fun to pretend. In reality, just a couple of days earlier, I was shaming myself for my own D-. I was getting my IVIG infusion. I forced myself up to pee, wheeling my IV drip into the bathroom with me, strategically shuffling to avoid tangling the tubing. I sat on the toilet which leaves me with nowhere to look but at my reflection in the mirror. I instinctively wanted to shatter what I saw. Defenseless against my bullying brain and my morphed perception, I saw dark eyes swallowing the blue sparkle I once loved, pale skin dully planted on a bony face, dirty unbrushed hair, eyebrows that needed tweezing, chapped lips, and sun spots. I saw a jaded, and imperfect face convicting me of a broken, worthless life. I started wondering where I went wrong- how did I end up so sick for so long? Then rapid-fire: I’m not drinking enough water, maybe I’m drinking too much water, what if I’m taking the wrong supplements, did I eat the wrong foods, did I take a drug that interfered with another, did I stay on antibiotics too long, should I have stuck out the Cowden protocol, should I have used more money for x instead of y, I don’t meditate enough, exercise enough, I’m not positive enough, maybe I didn’t rest enough, or maybe I rested too much. What is it about the “fucked-upness” of me that is keeping me sick? STOP. I know this voice —it’s been a lifelong enemy of mine that I can’t shake; it’s always finding new ways to attack me. But what a pussy it is—attacking me at my most vulnerable. This voice doesn’t have the same power it once did because after a year of being sick, I raised my white flag and I stuck it right where the enemy dies: in the acceptance of my own humanity.

In 2006, I lived in a Single Room Occupancy at the Y on 92nd Street and Lexington Avenue. It was depressing; the walls were bare, and each corner held a pitiful piece of furniture: a twin bed, a desk, and a dresser. That room reeked of a stale, lifelong loneliness. I tried to stay out as much as possible. I was in school, and I worked long hours as a waitress, saving money to pay my brother back. Apparently, I had been stealing from him. As it turns out, when you use someone’s debit card without asking (“for emergencies only”), you’re actually using their money and that’s considered stealing. Who knew? And what IS the definition of “emergency” anyway? I sat at my desk, counting the money I had saved AGAIN, stuffed it back into its white envelope, and looked at my bulky computer screen. BLANK. I had to write a paper, but I was overcome with a paralyzing embarrassment. I rested my elbow on the desk, my head to my fist, and I heard a sudden burst of laughter outside my door. I blushed from an increasing disgust in myself, and that’s when it hit me. I’m ashamed of my own existence, I thought, I don’t deserve to be alive- even the way I breathe- it’s pathetic. I feel guilty just to be taking up space, breathing in fresh oxygen. I was having a revelation- I knew exactly where that feeling was conceived. I felt the same in that moment as I did in 1996, Seven inches shorter, and about 95% more innocent, I sat in my bedroom alone- enduring my punishment for being a burdensome human who couldn’t do anything right. Thanks, Dad. That’s where I started unconsciously thinking: how could I make myself “perfect” so that I could prove my worth and avoid trouble? I didn’t want to be too needy, too independent, too obnoxious, too quiet, too sparkly, too dull, too smart, too dumb, too sick, too healthy, too happy, too sad, too pretty, or too ugly. I wanted to land right where everyone would HAVE to keep on loving me- right in the sweet spot of super cool but not cool enough to provoke jealousy. Wow. I assumed that the self-awareness in itself would act as a cure. Knowing where my need for perfection came from would surely evaporate the need itself. My self-awareness would be a short-cut around all of the pain. That theory proved to be wrong as I stumbled through the next 8 years, torturing myself- taking little steps forward but continuously seeking a way OUT of this whole human being business.

I started reading the spiritual books, meditating, going to therapy, journaling, doing yoga, and chanting -not to accept myself but to FIX myself. I stayed IN ACTION all of the time, soaking up every opportunity to “better myself” with the ultimate goal of finding a formidable plateau exempt from a vulnerable and fragile life. But life, by definition, is growth. So hanging in some euphoric plateau would actually just be heaven (aka death). I know, it’s super unfortunate. The whole “we’re on Earth to grow” business can be such a BUZZKILL. But why is it so scary to accept ourselves as imperfect? I mean, all magnificent art is built around imperfection. I remember doing a short study with an acting coach here in LA. We were talking about being in the audition room and how all of us actors want to go into the room and do a perfect job. She said, “ No one wants perfect. We watch movies and TV to watch other humans’ flaws and imperfections. It’s your flaws that MAKE YOU INTERESTING TO WATCH. You’d never watch a movie, read a book, or listen to a song about someone who is ‘perfect.’ What a snooze.” That inspired me- what if I could just let myself be, accept myself, and stop obsessing over every little mistake I made?

After all of that work I did to avoid my own humanity, I got sick. (I feel like this is the correct time to say, “isn’t it ironic,” but I’d hate for a bunch of controlling assholes to attack me with, “that isn’t what ironic means” after I write a whole essay on imperfection. OH, that would be ironic too, wouldn’t it?). Illness: the thing you think will never happen to you until it fucking does. I remember thinking that I wouldn’t fall prey to Lyme Disease like all the other weak people did; I’d be better in two months, at most. As time “ticked” by (see what I did there?), and I wasn’t getting better but getting sicker, I turned back to my favored tool: shame. And I used it to beat the shit out of myself. I blamed myself for the illness. I must be manifesting it, I thought, I’m weak, what’s wrong with me? I tormented myself for months, maybe even a year. When my beat-downs were getting so powerful that they became life or death, I started to aggressively seek a new way. That’s when I came to the conclusion that I had wasted my life trying to outsmart my humanity. I was on a scavenger hunt for something that never even existed. Talk about a buzzkill. I didn’t need to be healthy to be worthy. I didn’t need to look pretty or be sparkly or always have my wits about me. It has been through my battle with illness that I accepted myself as a flawed human…sometimes.

I didn’t LEARN; I’m learnING. The desire to outsmart my humanity still creeps in on me in unarmed moments—like last week during my IVIG, and even this afternoon when someone mentioned that I looked tired, and I heard, “you look pitiful and weak. You’re an embarrassing disgrace.” Why do we always get so offended when someone suggests we look tired? Why is it such an insult to be human? Today, I’m capable of recognizing those thoughts as unproductive, calling a loving friend, and forgiving myself for whatever mistakes I may have made. I’m capable of allowing myself to be tired— to love myself anyway. But sometimes I spiral into the darkness, anyway. I’m failing…better.

When I was like 19, I was having one of many heart- pounding tantrums about a boy. I stood in a circle of girls on a street corner in NYC puffing down cigarettes. I was in the quick sand of obsessiveness, talking in hysterics about whether or not he liked me, when he would call, or how to make him love me again- who knows – all of those big deals were such a blur once the next boy showed up. I looked at my 3 girlfriends around me, embarrassed, feeling like I couldn’t escape my own insanity, and said, “I know- I need to get over this.Oh God, I’m being so annoying.. who would ever want to be friends with me like this.” One of my friends smiled and said, “What? No, Jackie, I love you. And I don’t love you in spite of your ‘crazy’ I love you for it.”
I had never heard such an idea expressed. I try, and sometimes fail, to love myself and you for our collective crazy- our humanity. And when I fall short, I remember what Samuel Beckett said, “Try. Try Again. Fail. Fail better.”

 

With Fun and Love,

Jackie

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Ru Paul “Rules”:

My dear friend spent his weekend at “DragCon,” in Downtown Los Angeles,  where all of the famous Drag Queens from “Ru Paul’s Drag Race” gathered to inspire all of those who have that extra splash of color to their inner rainbow. Or maybe the Queens were gathering for the financial profit- doesn’t matter. When I was asked if I wanted a souvenir from the event, I frantically said, “yes! yes- anything that says, ‘if you can’t love yourself how in the hell are you gonna love somebody else?’ duh! ”

I got home last night after an awful Mother’s Day, feeling all depleted,  and this poster sat on my bed. I yelped. I squealed, “Ian! Look what I got!!!” My “on- the- spot happy” was in rage.  I just so happened to have a perfect sized frame that had my “vision board” in it. With no regret, I tore the vision board out and put my new poster in. THIS pretty much covers the idea behind every magazine clipping I carefully placed on that new agey creation, anyway.  Within 5 minutes, it was framed, and I was like, “This is going to go right above my bed!” And Ian, the boyfriend, was like, “Remember that time I bought you an iPad and you were just like, ‘cool, thanks.’ I’ve never seen you so excited about something.” It’s true.

BEST PART: the poster was free. No financial profit was had. SECOND BEST PART: Read the first paragraph from my post entitled “Read This” from  5 days ago- I talk about this exact quote.

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WITH FUN AND LOVE, Jackie Shea inspired by Ru.

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