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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How I became High Maintenance: A Top 10 List of how Illness Changed my Life

emergency stopping

10. I wear therapeutic bras: That’s right. One of my bras looks like the bra Robin William’s wore to play Mrs. Doubtfire. Yes, the under garments of my sexy 28 year old body are that of a 50 year old drag queen. I started experiencing regular breast pain just months into my diagnosis. I braced myself before each hug, I couldn’t lay on my belly, and it hurt like hell to take my bra off OR put it on.I had the intuitive thought one day, “what if it’s the underwire?” It did seem like every time I had a longish stint of being braless (YEAH I’m one of those lucky bitches- I don’t need a bra) I’d notice less pain. So, I tried it out. I found a bunch of underwire free yet supportive bras and, within a month, the pain completely went away and has yet to come back. Even DURING PMS, I’m not in much pain. You can hug me, shake me, accidentally bump into me, and, most importantly, SQUEEZE me. I highly suggest both sexy underwire free bras from Free People, sports bras, and SERIOUS therapeutic bras from “True& Co”- I promise, you’re even sexier for taking care of yourself.

9. I stay caught up on current events: This might seem like something I should have been doing for the last decade but, unfortunately, I was not that person. Seven years ago, I actually thought that Newt Gingrich was a town in New England, and I was like, “what’s all the fuss about Newt Gingrich- must be like the Hamptons’ of Maine.” I didn’t even know New England was a part of America until I was like 12 when my father suggested I attend college in “New England” and I cried because I didn’t want to be across the ocean. Geography is not my strong suit. So it’s pretty shocking that, these days, I’m the super annoying person that’s all, “Did you hear about Putin? The shooting? The blizzard? the oscars? Paris? Syria? Isis? Donald fucking Trump. Ted Cruz is a canadian. David Bowie is dead. Theres a new show coming to BBC, BERNIE SANDERS, abortion, immigration….” I often want to talk about the news because it’s the first time in my life I know what’s going on so I’m gonna capitalize on that shit. With illness, came a lot of time on my hands and some extra curiosity. Turns out, it’s VERY simple to stay in the loop. NY Times emails, Twitter, and some NPR, and you are swimming in information. All I really needed was a reason to sit still and Lyme Disease gave me an excess of that.

8. Phone Time: You probably loathe the idea of calling a customer service rep about something- OH just the thought of listening to that atrocious hold music that makes you question whether or not you even want a phone anymore! Yeah, it’s the worst. It’s also a part of my daily life. My speed dial consists of the phone numbers of my medical insurance, doctor’s offices, pharmacies, and my assigned case workers at various government- run agencies. It’s exhausting and, at a certain point, these calls are unproductive and actually harmful to my well-being. Therefore, I limit my calls- I can no longer attack these institutions with incessant dialing and yelling. Instead, I balance. I make one call, maybe two , a day and then spend the rest of my day not thinking about my medical “to-do’s.” I’m a lucky MOFO with lots of friends which means that outside of these “hours of operation” calls, my phone buzzes constantly. You know that airplane mode button on your nifty little device- the one that makes you appear off the damn grid. I USE IT- often. I’m an airplane mode PRO. When I need quiet time, decompressing time, or time to just be unavailable, I swipe up, click left, and take a deep breath. My phone is almost never on past 10 pm or before 10 am. Nothing is urgent enough for me- I am not the President…of anything.

7. I breathe (more deeply, and more frequently): I’m a distracted, fidgety, impatient, and excitable human, and that has been my lifelong default setting. Even when I had time to sit still or relax, I couldn’t focus. When I moved to LA at 24, my restlessness reached a new extreme. I stopped reading, watching TV, meditating, writing, or like, just sitting. I had so much extra anxiety which I medicated with work and exercise– I worked about 4 different jobs, and in between shifts went rollerblading, conquered the rings, took hot yoga, went running, and discovered new trails to explore. I did anything that induced emotional numbing via movement. I mean, I was avoiding my wildly painful grief and heartbreak-  my body was incredibly smart. I sit still today. I need to. First, it was forced and felt like torture. Now, it’s voluntary and I often enjoy it.  I need quiet time. I write for about 2 hours every morning. I average about 45 minutes of reading everyday, an hour of TV time, and 10 minutes of meditation. AT some point, every afternoon, I put my phone in airplane mode and nothing is allowed except a book or TV for one hour. I get more done now, too. Who knew?

6. I’m much tidier: About a year into being sick, I got the advice to make my home a serene, healing environment that I loved being in. I hadn’t had a “serene” environment pretty much ever in my life (except for those 2 years I lived on Maui). I grew up in chaos, and, as an adult, I was NEVER home (see number 7) so I didn’t need a nice environment. I was also a total hoarder- a saver of everything that might have the slightest meaning. I lived in survival mode so I was always like, “I might need that one day!” Things were cluttered, confused, and chaotic. Not anymore! I’m creating a peaceful, joyful, and organized living space for myself. I put things away when I’m done with them, hang my jackets up when I get home, I almost always know where my keys are, and I open bills as soon as they come in. I throw things away or GIVE THEM AWAY as soon as I no longer need them, AND..I make my damn bed daily! Marie Kondo, the NYT bestselling author of, “The Life-Changing Magic of Tidying Up,” has been my main source of inspiration. Check her out! I no longer have the luxury of making a mess and being OK with it.

5.What I spend my money on- Gone are the days of reckless spending on that shirt, that trip, and those shoes. Today, almost all of my money gets spent on supplements (hundreds of dollars a month), natural treatments like acupucture, and the most expensive food in the market. It’s hard to hustle which means it’s hard to have an excess of money to spend, and, when there is some extra money, I’m way more excited about that juice cleanse, or spirulina powder than I am about the Jeffrey Campbell shoes. I DO, of course, occasionally buy something for fun, or take a trip, but it’s always well thought out. I buy it because it brings me the kind of joy that will, in fact, enhance my physical, mental or spiritual wellbeing.  It’s unreasonably expensive to keep myself alive which brings us to..

4. FOOD- I grew up with a mother who told me “raisinets” were healthy because “at least they have raisins in them.” I grew up on powdered soups and the occasional steak or meatloaf dinner. I loved creamed spinach and creamed corn, and I considered these excessively healthy options. So, when I entered my late teens and started eating Kale, quinoa, veggie burgers, cottage cheese, almonds, and fruit, by god, I thought I couldn’t get healthier. I mean, I was a pack a day smoker but kale cancels that out, right? I had no idea what the world of wellness and clean eating actually looked like. The exclusions in my diet, today, were strategically made to 1,) starve Lyme and inflammation/ keep my body in an alkaline state and 2.) to rebuild my immune system so it can work it’s magic. I do not consume any eggs, pork, gluten, dairy, sugar, canola oil, MSG, natural flavors, corn, soy, or citric acid. This means that I read every ingredient label detecting for one of these ingredients and, if it’s on there, I don’t eat it. It’s intense. Go try to buy an in store hummus or frozen veggie patty that has no canola oil, citric acid, eggs, or soy in them. It’s hard AND expensive. What I find surprising, though, is the consistent follow-up question I’m posed with, “what DO you eat?” I mean, I eat everything that isn’t on that list which is like more foods than I could possibly fit into this paragraph. I eat organic veggies, fruit, grains, legumes, oils, meats, nuts, seeds, nut butters, and my signature 2 raw cloves of garlic a day. Yeah, I stink. I drink enough water to have earned the nickname, “Hydration bully,” and i also love me some coconut water or celery juice. But let’s get really real: I drink coffee- it’s pretty much the most joyful substance in my life, I eat potato chips that are like organic and made with coconut oil (but still..) and sometimes I cheat BIG: I’ll just say “fuck it,” and house an “In N Out” burger, or pizza, or ramen, or a cupcake, or movie theater popcorn WITH butter. It’s rare that I cheat BIG because it’s totally not worth the follow-up pain, but I don’t want to pretend to do this stuff perfectly..

3. I’m softer : UHM NO- I am not talking about my atrophying muscles, inner critic, but thanks for the reminder. GEEZ, sometimes my head is such an asshole. What I have is a softer heart and outlook- a softer experience around my own humanity and yours. Pre- illness, I could be harsh and judgmental of the human experience. My standards for humanity were irrational, unreasonable, IMMORTAL. I blamed people for their suffering, “they brought it on themselves, that will never happen to me” kind of attitude. For example, a few years back, I was very good friends with a woman who was struggling with an unknown illness, and I suggested that if she simply leave her destructive romantic relationship, she’d probably get better. Sure, I do believe that toxic relationships can do great harm to the body, but, in the end, I was blaming her. I wanted it to be her fault that she was sick. Nobody, I repeat, NOBODY, wants to be sick. I’m not so scared of human experiences today. When people tell me about their divorce, illness, miscarriage, abortion, heartbreak, financial trouble, etc.. I feel for them and hold a loving space for them. Look into Dr. Brene Brown’s talk on empathy vs. sympathy. Being sick taught me a shit load about true empathy. Today, I’m also not as demanding of myself or others. People are allowed to make mistakes in my world today. Even more importantly, I AM allowed to make mistakes today. We really are all just doing the best we can. Here’s to an imperfect practice of this thing called life!

2.Aint Nobody Got Time For That!: AKA: I have a very limited number of fucks to give. OR, the more popular phrase, I have a limited number of “spoons.”  The “spoonie” term and theory was deveoped by Christine Miserandino and is now used worldwide by sick and suffering people to describe the sensation I am calling “a limited number of fucks to give.” When you are a healthy person, each day comes with an unlimited number of possibilities, but when you have something like chronic illness dictating how many possibilities you get that day, you are a “spoonie.” The idea is that we wake up in the morning with just a few spoons to use and each time we use one, we’ve got one less- our energy is a little more depleted. So we have to be strategic every. single. day. My strategy: I do not welcome anything into my life that doesn’t support me emotionally, mentally, or physically. I’m on a mission for total wellness. If it doesn’t enhance my spirit or my health, it GOES. For me, that included a few relationships- those hurt the most. The best advice I ever got around illness is this: “Do what feels good all day long.” It’s amazing how when I started focusing on only the things that feel good, how much more I started saying NO to people, and how much started falling away from my life. When it was life or death and I was forced to put my every action under a magnifying glass, I realized that I was engaging in a lot that didn’t ultimately serve my highest purpose. What an incredible awareness!

1.I’m an insomniac- I have NEVER had sleep issues. I didn’t know jack about how painful insomnia was. My brother, on the other hand, has been suffering from it all of his life. When I was a kid, I’d wake up all casually well rested (like an asshole) and I’d pass by my brother’s room and see him in some sort of rotated, mutated form, looking like a wild animal that had taken a tranquilizer dart to the face mid outburst and finally, with one last squeal, passed out. He could never wake up in time, he was always moody, and I judged him. No wonder he hated me. When I got sick with Lyme, it came on slowly. First, I just couldn’t sleep through the morning sun. Then, I had a hard time falling asleep. And then, nine months later, I STOPPED SLEEPING. First I tried household drugs: Nyquil, benedryl, and dramamine- sometimes, feeling desperation around 3 am, a combination of a few. Nothing worked. I was now not only sick, and on zero sleep but also heavily drugged and emotional. I started crying all of the time- just constantly. My good friend always reminded me that sleep deprivation is a legitimate form of torture used by military systems worldwide. It’s true- watch Zero Dark Thirty, or Homeland- sleep deprivation is the first tactic. Just imagine being more exhausted than you’ve ever been and incapable of sleeping for nights on end. People are always confused, “But if you’re exhausted all of the time, shouldn’t you just be able to sleep?” Jonathan Franzen says in The Corrections, “his tiredness hurt so much it kept him awake..”  That’s what it’s like. My face hurt, my body hurt, my anxiety was unmanageable. When it came time to try to sleep, it felt like Satan was taking control of my body. I’m NOT kidding. To date, I have been prescribed Trazadone, Ambien, Valium, Kolonipin, and tried every natural version of sleep medicine you can name. I have had varying experiences with each drug. Nothing truly worked, guys- not until I started getting healthier. I could be awake for a full 60 hours in terrible flares. I could have walked 5 miles in a day, or done yoga, meditated, stretched, had no caffeine, done an infrared sauna, not eaten for 3 hours before bed, watched something soothing, listened to whale music, classical music, EMDR, focused on my breath, prayed my ass off and/ or done ALL of those in one day AND, STILL, NO SLEEP. Any solution you had for me, I tried. These also came with varying degrees of success rates. I’ve done yoga, taken a hot bath, popped a valium, then had my back rubbed while I was sung to and, GUESS WHAT, NO SLEEP. That shit is rough. Today, I sleep. I don’t sleep well necessarily, but I mostly sleep. Sometimes it’s with the assistance of Valium but more often it’s with “Tranquil Sleep-” the most potent natural sleep aid. I focus on my breathing, I don’t let the negative thoughts take over, BUT, when I’m in super bad shape physically, I still can’t sleep. IT’S PART OF THE ILLNESS, and it sucks. I repeat- the MAIN thing that has made my sleep better was getting healthier. I beg of you, be compassionate and understanding and loving towards people who cannot sleep (whether they are sick or not)- including yourself.
If you stuck with me for this long and read all of those then I have a little gift for you. I have a number “zero” bonus feature. Guess what I talk about now more than ever in my whole damn life? Did you guess Bowel Movements? That’s right. Us sick folk are just CONSTANTLY being asked how our bowel movements are. And then, we start talking about it together or doing things like coffee enemas. My dear friend and business partner for “wellness companions” sent me a coffee enema kit and said, “we can Skype for your first one in case you need help!” NOTHING WEIRD HERE, GUYS… just all of us trying to manage our own shit and stuff.

With Fun and Love,

Jackie.

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