The Power of Passionate Living

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Fuck the power of positive thinking. Spirit is far superior to the brain.

“Show me how you fight.”

“Show me how you live.”

“Show me who the fuck you are!”

– Aaron Eckhart in “Bleed for This,” the new Ben Younger biopic based on the life of boxer, Vinny Pazienza.

Do you know about Vinny Pazienza? Or maybe you know him better as the Pazmanian devil?  Don’t feel bad if you’re drawing a blank. I had never even heard his name before I went to the screening of “Bleed for This” last week. Of course I didn’t know his name—I didn’t even know the World Series were presently happening until I called a friend last night and she was like, “can I call you back. I’m watching the World Series.” And I wondered who was playing but forgot to google it because I just really don’t care. So it’s no shock that I didn’t know about the life of a pro boxer from the 90’s.

Vinny Pazienza is known to have the greatest comeback in boxing history. In 1991, on the heels of great success, a grave car accident left him with a broken neck. Doctors gave him the unsettling news that he may never walk again and that the boxing ring was undoubtedly only a part of his history—not his future. He wouldn’t have it. Fueled by fierce determination to fight again, Pazienza passed on spinal fusion surgery and opted to be fit with a halo—a medical device screwed (literally) into his head for a few months so his upper body would remain entirely still while his bones mended. The halo was a risk; spinal fusion would guarantee a future that involved full mobility while the halo simultaneously put him at risk to never walk again BUT if it worked, he’d have a shot at the ring. His friends, family and doctors saw him as delusional—all were confident that he would never fight again. Ignoring the doctor’s orders, Vinny secretly trained while inside of the halo—an act that is incredibly dangerous considering that one misstep—one bump or fall— could push the screws through his skull impacting his brain. He had a shitload of passion and determination. He needed to fight, he needed back in the ring—nothing would deter him from getting well. Indeed, he returned to the ring within a year and won his first fight back. It was a title win… he got one of those big belts.

In the movie, the bloody  story is supplemented with inspiring music and montages, ramping up the audience to get busy living their own life with an equal amount of passion and perseverance. Music and montages can make the most horrific experiences seem almost desirable, can’t they? Life isn’t like that. I’m sure it was an incredibly challenging year for him—I’m sure it SUCKED. But  he had a goal, and he had a fervor and zeal that kept him moving toward that goal— that kept his cells bursting with energy. He was not “thinking positively,” his spirit was at work. And THAT gets my rocks off.

The ecstasy I felt watching Vinny conquer his injury reminded me of “Meru.” Do you know about Meru? Meru is a Himalayan mountain with a summit at 21,850 feet known to some as the new Everest—in fact, it’s technically a harder climb with its icy vertical faces. The first completed ascent was made in 2011 by a team of three pro- climbers—Jimmy Chin, Conrad Anker, and Renan Ozturk. It was their second attempt as a team.In 2008, the three gave it an honest go but they made the calculated decision to descend before triumph due to dangerous weather conditions. Chin, Anker, and Ozturk were determined to reach Meru’s summit to spite the painful conditions, and after a couple of years, they decided to play with mother nature at her most violent…again. This time, they had hard-earned knowledge of the mountain and they were set to succeed. But, five months before their planned ascent, Ozturk had a skiing accident so brutal that it has continued to be referred to as”near-fatal.” His vertebrae were shattered, he had a cranial fracture, and was facing a stark future.

Five months later, he climbed Meru with Chin and Anker and made summit—a task that verges on inhumane. Just in case climbing the mountain twice wasn’t enough, they also filmed and completed a beautiful documentary called—wait for it— Meru. Like Pazienza, Ozturk was determined, dedicated, and full of life- force-passion—nothing would stop him and nothing did. He had a full recovery and continues to climb today. How the fuck?  Thankfully, you don’t need to have a passion for fighitng or climbing a mountain. You don’t need to “live on the edge” to know what I’m talking about.

When I was first diagnosed with Lyme, I KNEW I would beat it. I wouldn’t live with it. I wouldn’t be a person that “managed symptoms.” I imagine it was the same way Pazienza and Ozturk looked  their fate dead in the eye and said “no.” I had no choice. I loved life too much to be inhibited by an illness. I was too determined to experience the abundant juice and zest. I refused to suck on a dry orange. But then I got sicker, and it got scarier, and I got more and more beaten down and worried that maybe I didn’t have what I needed to beat it. And in those moments, I needed to remember two things. I needed to remember that *some things* are beyond my control. Let me be very clear. I know people who were not as lucky as Ozturk and Pazienza.  I know the people who are stuck in wheelchairs for life because of freak accidents. People that are not actively choosing to put themselves in danger, die or end up paralyzed. It’s “unfair” and I am in no way suggesting that if those friends of mine had a little more determination and passion, they would reverse their condition. NOPE. I believe that certain things are beyond our control. I’m not a monster. I needed to have compassion for myself and my reality BUT I also needed to remember the stories that prove the impossible IS possible. Lyme IS curable. I needed to remember that healing could happen even when the doctor (a human being with an MD that makes mistakes all of the time) swears it can’t. I needed to see the people who were hit with the “irreversible” obstacles, REVERSE them. And that includes all of the people who are in a wheelchair AND living their best lives. In fact, that’s even fucking cooler.

About one year into my illness, I was crying on the phone with a friend— a friend who had a complete recovery from Lyme. Crying about how sick I felt, about how lost and alone I was, about how weak I was, how ugly and depressed I had become, and how completely terrified I was. I was pacing back and forth in my bedroom fueled by anxiety. She wouldn’t listen to my complaints or my symptoms. She kept redirecting my attention to my heart. “You need to get in touch with the most powerful part of yourself. Think back and remember a time where you felt the most powerful. Think about how you felt before you got on stage for the first time or something..I’m sure you have something.” I stopped pacing. I did.I felt a surge of energy boil in my core and overflow into the rest of my cells—my fire.

I was in the fourth grade. I was uncool, becoming more timid by the day, and a complete liar in an effort to make friends. I felt more and more ashamed of who I was on a daily basis. Was it my father’s abuse catching up to me, was it the school I was in, the cruel kids I was surrounded by? How had I gone from an entirely confident and optimistic kid to one that profusely sweat and blushed with embarrassment at the sight of herself? I sat upright in the school auditorium waiting for my name to be called: I was signed up to perform for the Storytelling contest that day in front of my whole grade. I had been practicing, “The Three Billy Goats Gruff” with my mother, and I felt READY. I didn’t know I wanted to be an actor yet. Looking back, I don’t know why I was so excited, so ready, so talented. I just was. The teacher in charge called my name and I walked confidently up to stage. I was handed a microphone, I turned on my heels to look out at my peers and something happened. They couldn’t touch me. I was free. I was lit up and ready to explode. And  I did. I was brilliant and I knew it. I held the audience captive—even the girls who would have loved to hate me— they couldn’t. I sparkled through my last line and figuratively dropped the fucking mic. I wasn’t surprised that I won—I knew I would. THAT power—the kind I had before my brain knew *too much* about life.

I tapped into the power I felt when I auditioned for Fiorello H. LaGuardia High School—the steadfast confidence and the surety that I WOULD get accepted. I was 13 and the audition process was a day long—performing  monologues, improv,  interviews, memorization tests. I walked into one interview room that had wall-to-wall mirrors in it, and I eyed myself sweeping across the floor. My back was straight, my heart was full, and I was being PULLED forward. I wasn’t pushing or forcing. I was letting passion carry me.  I did get accepted and within one year everything took a nose dive. My brain became too active, my father started using drugs, I was distracted by boys, I hated myself,  and self-medicating was the only solution. Brene Brown says we can’t selectively numb. We can’t. As I numbed my dark thoughts, I also numbed all of my passion until I was left empty.

By 19 years old,  I had cleaned up my act and started thawing out. My passionate light was burning again and melting away all of the icy stuff, but I never fully recovered. I still knew too much—I still thought too much. I used my brain to outsmart my humanity forgetting that while my heart might be where the scary feelings are, it’s also where my power is. When I got sick, I needed my spirit more than ever. I needed to get out of my own way, shut the thoughts down. I needed to tap into the part of me that shouted  “I AM CAPABLE OF ANYTHING. I’VE GOT THIS.” I started closing my eyes and remembering that pure feeling in my body and every time I tapped into that same power I felt at 9 and 13, I felt brighter and lighter and stronger and way more capable of accessing full health. It’s no easy feat when you can barely find the energy to get out of bed, let alone the PASSION to get well, but if I could just tap into it every now and then, if I could just find  the surge to keep going then I’d keep going and slowly but surely… I went.

I love being alive. There is so much sweetness, so much power in this life and I want IN. I want in. I use that same passion, the same drive, the same need that Ozturk used to get up Meru and that Pazienza used to get in the ring, to experience this life free from illness. The same fire I used to mount stage at nine years old, and the same fire that fueled my admission into LaGuardia is what keeps me going—I am determined to live my best life. While I am about 1,000 times better than I was, I am not always free from illness and pain (and I highly doubt that Ozturk and Pazienza are free from pain). I woke up today exhausted, with pain in my joints and sore feet. I’m not going to run a marathon today (or ever because I have no desire to), I’m not even going to do yoga today. But I have two choices: To obsess over my pain and my fatigue, beating myself into a deeper darkness, OR to take a little trip into my lively spirit and let it do the steering. I got out of bed, I drank a green juice, and I got to the coffee shop to do some writing. I’m in warrior training. It’s more hardcore than surviving Meru or getting my nose broken for some big old belt. I’m in training for mind, body, spirit thriving and  thinking has nothing to do with it. It’s pure fucking spirit. It’s heart. And all of us have it.

With fun!

Jackie

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

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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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