Treasure-Hunting? You Have the Map

314. %22Safe Route%22

If you’re here looking for a quick-fix solution to Lyme disease, I will disappoint you. If you’re here because you’re googling in a desperate search for the way to “get better asap,” I will—sadly—disappoint you. I am a person that has a great deal of recovery from this disease and more to come, but the most important thing I have learned over my two- and- a half-year long struggle with Chronic Lyme disease is that there is no one solution, no one way, no magic trick. What works for my body, likely won’t work for your body and what works for your body would probably need to be modified for mine. Antibiotics do not work for everyone. Nor does The Cowden Protocol, the Buhner protocol, Ozone therapy, infrared saunas, eating raw, high doses of vitamin C, coffee enemas, IVIG, stem cells, reiki, and the list goes on. For most people(including myself), it’s a combination of many things, leaving an uncertainty around what ACTUALLY “did the trick.” But look at that list: yes, it’s scary and confusing that there’s no one remedy, no steadfast solution, but it is also a list that presents bountiful opportunities to heal; there are no real barricades, there’s always a new road to explore. Healing flaunts an abundant landscape. On this site, I can only write about my experience, the paths I went down, which paths led to an opening and a rainbow and which ones led to a moldy cave summoning death. I can only hope that one of the paths I suggest happens to help you. It was frightening when antibiotics — the most commonly known treatment for Lyme — didn’t work for me. It was frightening to look at all of the forks in the road and know that nobody, not a single person, had the exact directions that would lead me out of the woods. That my guidance needed to come completely from within was startling…lonely, but every time I relied on someone else’s map, it didn’t take me where I hoped it would go. It felt so hauntingly desolate to be that much of an individual— I felt I had already done enough work in this area, and I really wasn’t up for the task of a deeper relationship with my internal guidance system (fuck that), but it seemed like I didn’t have a choice. If I wanted to heal I was going to need to become my own greatest ally, advocate, and traveling companion. And I wanted/want to heal.

As a result of how I was raised, I didn’t trust myself for most of my life. My personal instinct and self-trust— something that we are all born with— were stolen from me and replaced with extreme self-doubt. My notably powerful inner-voice was quieted by my father’s outer-voice, force-feeding me the idea that I was wrong… always.  That foundation left me endlessly seeking counsel on what I “should” do, the opinions around me seemed to hold more weight than my own. And then in my early twenties, I was faced with a big decision that no one could make for me, and I was forced to begin the scary descent into self.

I moved to Hawaii from NYC when I was 23, both for a boyfriend that made me feel safe, and because I didn’t want to do the NYC grind anymore. Deciding that I wouldn’t let an acting career control my happiness (I didn’t want to live in NY or LA or London), I moved, thinking, “if I love to act that much then I can act from anywhere.” And I did just that. I landed on Maui and within a couple of months was on stage and signing with an agent on O’ahu. There was one tiny little problem—I HATED it. I was a big fish on dry land. I loved the work I was doing, and I loved a lot of the people (some very talented) I was working with, but, in the end, there was a total disconnect: I did not belong. I didn’t want to talk about the surf, I wanted to talk about George Bernard Shaw, and I didn’t want to look at one more fucking painting of coral, I wanted the MOMA. And I didn’t want to be the best, I wanted to be INSPIRED and challenged by the best. But leaving Hawaii meant leaving my long-term relationship with my sweet boyfriend, it meant leaving a picturesque mountain home essentially on a goat farm. It meant leaving my very  comfortable life that COULD likely satisfy me on some level for a good time to come. I wanted to leave, but what if leaving all of that was a terrible decision? I struggled for over a year. YES, OVER A YEAR. Should I stay or should I go?  Or maybe I should move to O’ahu ? ON REPEAT, for a year, to anyone who would listen. I wished more than anything that someone could just tell me what to do, what the right thing was, or give me the instruction manual on how to live a fulfilling life. I attended Unity Church one Sunday, a non denominational experience of— I don’t know— spirituality, in a desperate attempt at peace. After the service, an announcement was made that there were prayer chaplains, people who pray with you, and I jumped up to be first in line— I was THAT desperate. I was seated opposite a mild-tempered man dressed in pale linens—his demeanor matched the luxurious breeze and lush scenery on the outdoor balcony. I was the thing that didn’t belong, dressed in black, a tea kettle about to scream. He looked at me and said, “what do you need today?” The blue sky and the green grass darkened, the breeze went stale as I shifted out of the present and into the fear of the future, and I burst into tears, “I don’t know…GUIDANCE. I need guidance, desperately.” I closed my eyes to deepen my breath, he gently and lovingly— like he was an old friend— took my hands and… said a bunch of spiritual stuff that I don’t remember. I opened my eyes, now bored and still without an answer, and that’s when he said one last thing, “may you always know that the guidance is inside of you and nowhere else.” DING DING DING. I did know. That deep-knowing that I had been trying to repress for so long came storming through the surface, like a breeching humpback whale, and bellowed, “please leave. You need to go, you need to leave your guy, and you need to go to LA.” Motherfucker. My heart wants the most complicated shit. Plenty of people would have wanted to stay, plenty of people would be happy and thrive doing exactly what I was doing, but I am not plenty of people, and I cannot steal your desires. I cannot rob you of your internal guidance system because I can’t locate my own.

I went— I went terrified, in tears, and with almost no money, but I went, and I claimed for months that it was the hardest decision I had ever made. I don’t know why—I had already chosen to quit drinking, quit doing drugs, move multiple times, cut off my father, welcome him back in, leave multiple relationships, quit college, continue my education as an actor, quit jobs, take jobs, turn down jobs, etc—but something about leaving that relationship and that goat farm on Maui for LA life truly felt like the hardest decision. I turned 25 in Los Angeles a few months later, and I was high on my new life. I had made the right choice, I was thriving.  And then, suddenly, my worst nightmares started to manifest. I went overboard, and the only thing that threw me a life-raft when I was a hot- second away from drowning was my internal voice.

I was profoundly tested in the waves of a destructive romance and a new decision needed to be made that would deeply affect the rest of my life—would I deny myself and submit to his storm in an act of feebleness or trust that the life-raft would lead me safely to shore?  My inner voice was wild and loud. I knew from the moment I met him that he and I would clash so profoundly it could be deadly, and I repressed myself again, manipulating my truth to get what I intellectually wanted—self-betrayal is almost a betrayal of the Universe and, in my experience, it has always led me to the depths of despair. Again, what was my near-death experience is probably someone else’s fantasy life. Someone else could have happily been in that situation, but I wasn’t—I wasn’t just unhappy, I was suicidal.  When the act of not listening to my gut was actually going to kill me, I gave in—I left him, I flew to NYC to recover from what was a traumatic experience, and I vowed to trust myself, to listen to my inner voice from there on out. It knew better than my brain did. I would stop denying myself, betraying myself, abandoning myself, and I would pay attention to what my body wanted instead of shutting it up with some damaged part of my brain.

Again, I thought I had learned enough at that point: there would at least be a couple of years  of smooth sailing. NOPE— I got sick just a couple months later. While all of that previous experience gave me a foundation to grow from, trusting my guidance system when it came to how to treat and heal from an illness—when literally EVERYTHING (my life) was at stake and literally NO ONE had the one answer— that is next-level shit. I actually had no idea just HOW MUCH information my body held. Our bodies are very smart.

When the common treatment of long-term antibiotics didn’t work for me, I was faced with the horrifying task of trial and error. I learned/ am learning to submerge myself in patience and self-care. Slowly, the practice of staying in touch with my body, consistently doing what felt “right” to me, going where the love was, and being my own greatest ally has dropped me here—in a much healthier place. We are each dealing with distinctive chemical structures/illnesses/traumas/brains and therefore, we all heal differently. I found out that the guidance system I hold within my little self is a perfectly detailed map to the treasure, inviting me to use it freely whenever I want. I still turn down the offer sometimes because I’d really rather not walk through the Lion’s den that is sometimes life, but it’s there, and it’s the best tool for healing Lyme disease I’ve got. I am sorry if this disappoints you, but that is what I have to share today: find your own way, trust your body, and learn to love the shit out of yourself. Find a few (or a hundred) loving hands to hold on the journey but you lead the way—the benefits are miraculous and empowering.

With fun, love, and an abundance of healing,

Jackie

Share if you liked it:

The Story I Never Tell: There’s No Silver Lining

224. still

My body was breaking out in mysterious rashes.
I’d discreetly lift a pant leg to reveal the repellant red rash and ask people what they thought.
They’d say, “ Huh, that’s weird, but I promise you it’s no big deal.”
Or, “Don’t worry so much.”
Or, “Be positive. Have positive thoughts.”
I was positive when they first broke that they were no big deal, and I was positive as time went on that they would heal.
Weeks passed. I was panicking.
The rashes got worse.

I saw an herbalist.
He examined me and gave me some herbs saying, “don’t worry. It will clear up in a couple of days. These always work.”
I left his office positive that I was holding the solution in my hands.
I was relieved.
I took the pills. I took his advice, putting tea tree oil on the irritated areas.
The rashes continued to infiltrate my body without my consent.
I was concerned. People said, “I’m sure you’re fine. Stay Calm.”

I saw a doctor at Urgent Care and he suggested it was Lyme disease.
PHEW. I felt naively positive about the diagnosis.
At least it’s not bed bugs or psoriasis, I thought.
Because NOTHING is worse than bed bugs, right?
Wrong.

I was told to find a lyme literate doctor in the LA area.
Easy, not a problem, right?
Wrong.
I was turned down by four or five different offices.
“We aren’t accepting new patients.”
“We have an opening two months from now.”
“We are 1,000 dollars for your first visit.”
I cried.
Why was finding a doctor such an obstacle?
Why didn’t anyone want to help me?

I found a reasonably priced doctor in San Diego that was willing to fit me in.
PHEW, I was positive THAT was the beginning of the end.

I drove to San Diego, and the doctor prescribed three different antibiotics for a duration of two months.
I left her office absolutely certain that an attack plan like that was more than enough.
It was good I caught it so early, she said.
It was good I was being pro active about my health, I thought.
I would be one of the lucky ones– I’d escape the terror presented with Lyme, I told you.
I put about $2,000.00 on a Credit Card that day for the doctor’s visit, the medicine, and herb tinctures to support my body. I thought I’d pay it off quickly.
I took 456 oral antibiotics in two months.
I was tired.
I reminded myself that it was temporary; that I would get well soon.

Two months passed.
I took my last pill and posted on social media, celebrating, “the end! Back to the mountains”
I went on a hike.

Two days later, I got sick with merciless flu-like symptoms.
I was scared; I could tell something was wrong.
I convinced myself that my body was adjusting to being antibiotic free.
Two weeks went by and the flu-like symptoms lulled into my new normal.
I stayed positive, and I stayed busy waiting to hear the results of my blood tests.
I was positive they would be negative. They HAD to be negative.
I told you they would be negative.

The results came back positive for active Lyme infection.
I fell onto a bench in Union Square, NYC.
I sobbed.
It made no sense.
I felt so alone.

My doctor said I needed to do another few months of antibiotics including an intramuscular injection called Bicilin.
“Do you think you can you stomach more antibiotics?” she  asked
“I can stomach anything that will get me well. Promise me it will get me well.”
“This is the best course of action, especially with the Bicilin,” she said.
At least I had an action plan. OK so another few months.
I COULD and WOULD handle it.

Insurance refused to cover the Bicilin.
I started fighting with insurance.
Day after day I listened to hold music,I got transferred to person after person who could not/ would not help me.
I was being denied such a basic right.
If the doctor says it will help cure me of this hell, why would insurance deny paying for it?
Months went by, fights ensued, and we finally gave in to paying out-of-pocket.
My mother generously paid 1,000 dollars to get me a month of shots at $100 a shot.
People said, “You have this shot now. Be positive. It WILL do the trick.”
I was certain that the shot would cure me; the doctor told me it would.
I was grateful that my mother could pay for it.
I stayed grateful.
I got so much sicker.

I tried to apply for disability.
I got turned down.
I kept working instead.

Four months of antibiotics went by. I can’t count the number of pills I swallowed.
A daily dose of red pills, blue pills, white pills, pink pills, and one
long, painful shot in the ass that left me limping for a day or two.
I slowly suffered.
I consumed countless disgusting herbal tinctures and hundreds of supplements that I didn’t know existed – just to combat the fucking armed rainbow terrorizing my gut.
I was counter- attacking Lyme from all angles.

I started writing a script.
I kept working.
I stayed positive.

I swallowed my last Clarithomycin feeling very sure that it was over.
I posted a photo of myself laying in the sun, “antibiotic free!”
I kept wanting YOU to think that I was “getting better.”
Because I kept needing to think I was getting better.
A week went by, I was doing well!

Suddenly: Crippling pain.
Suddenly: Insomnia.
Suddenly:Muscle spasms, sore soles, ear pain, confusion, and heart palpitations.
Suddenly: darkness.

I went away from social media. I had nothing positive to say.

I dropped out of acting class; I couldn’t do it
I dropped my short film; I couldn’t do it.
I stopped eating, and I stayed in bed.

I called the doctor AGAIN.
She put me on a new regiment of antibiotics — a set of colors I had yet to experience.
I took them for a month along with my newly prescribed sleeping pills that didn’t work.
My body was giving out.
Lack of sleep, all of those pills, and Lyme Disease were officially kicking my ass.

I couldn’t sit up.
Laying down hurt.
Social events were the loneliest events.
Showing up at work was the greatest acting challenge I had ever been presented with.

I called my Uncle from my serving job one morning.
It was 6 am LA time, and I was cleaning up a cafe preparing to serve people on no sleep and belly full of pills.
I wanted something… some sort of comfort that my father couldn’t offer me.
He said, “Oh honey, I’m sorry, but be positive, don’t forget to be positive.”

Be positive? It’s like watching someone laid out on the concrete getting their face bashed in and standing across the street from them, watching, and shouting, “Don’t worry, man, THINK positively. The pain will pass. Hey- at least it’s temporary.”
Instead of crossing the street, getting down to their level, holding them, and saying, “I’m here. Where does it hurt? How can I help?”

My mind, body and spirit pain were expanding, wrapping me into a straight jacket.

I was a prisoner.

I couldn’t fight and my perp was a tough mother fucker.

I took myself to the Hollywood Mental Health clinic at 8 am one Monday morning.
I stood in line with homeless people who blew their noses too loudly and stood too close to me.
I just needed to survive.
I wouldn’t tell anyone.
Not until I felt better. Not until I could stop crying.

I couldn’t do antibiotics anymore.
I decided that I would beat this naturally; antibiotics weren’t working.
I was 100% sure that was the right choice.

I had no money which presented a great obstacle if I wanted to heal naturally.
My credit cards were maxed out already from this medical hell.
I kept working: serving, acting, babysitting, and a few other random jobs I used to pay my rent, feed myself, and go to acupuncture.
At least I had a job, at least I could pay my rent. The money would come, I told myself.

I did a fundraiser, and you guys supported me BIG TIME.
The fundraiser allowed me to quit my waitressing job.
You sent me to Florida to get peptide shots.
I was SO excited/ hopeful about those peptides.
I posted about all of my gratitude and progress.

Weeks passed. Peptides helped but it was apparent they were not the solution.
I never said that out loud.
I couldn’t.
It was too painful.

Onward. I found a new, highly recommended Lyme doctor in Los Angeles. I felt so good about her.
She could over see all of my care here.
She cost $600.00 out of pocket for the first visit.
After much deliberation, I used some fundraiser money for it.
She WAS going to get me well.
I told you that she was.
I was being just as strong for you as I was for me.
So that you wouldn’t get scared and run away.

She ran a host of new blood tests.

I didn’t post when the blood tests came back with numbers that terrified me.
I couldn’t understand exactly what they meant.
She wouldn’t review them with me unless I paid 300.00 for the follow-up visit.
I emailed:
ME: “I can’t pay you but will you tell me what these immunoglobulin numbers mean?”
DR. : “Chronic disease.”
ME: “Lyme disease or something else.”
DR. :“Lyme, something else, or both.”

I felt let down by her.
I felt let down by my San Diego doctor who kept filling me with antibiotics.
I felt let down by my family.
I felt let down by my General Doctor again and again and again.
I felt let down by peptides.
Let down by the Cowden Protocol.
Let down by some friends.

Let down by my body and myself.
This was too dark; I got back into action.
What CAN I control? Where can I find positivity?

I went to Bali for two months of ozone therapy.
My best friend took the journey with me and paid my way where the fundraiser fell short.
My mom helped a lot, too.
I was so grateful.
stay grateful stay grateful stay grateful.
I put those blood test numbers out of my head.

I got stuck with 40 needles in two months.
I cried a lot. I was in horrible pain.
I didn’t sleep.
I showed up anyway. I went to yoga anyway. I meditated anyway. I wrote anyway.
I loved anyway.

I was very sick the day we left Indonesia.
So sick that we had to fight to get on the plane.
“She looks too sick,” Cathay Pacific employees said as they ran around trying to determine whether or not they wanted to let such a sickly human on the plane.
What the FUCK do I look like?” I wondered.
It had been a year and a half, but I still didn’t even really believe that I was sick.
I still don’t, sometimes.
Denial helps.

I got back to LA.
I attacked life immediately because I HAD TO BE better.
I promised you I would get better in Bali.
Within 24 hours, I was at an audition that nearly killed me.
Ozone therapy helped more than anything else had, but I pushed it.
I couldn’t do it; I was back in fetal position.

I got an easy front desk job at a yoga studio.
Then they let all the front desk people go.

I got food stamps.
I got unemployment.
They took away my food stamps.

Through a series of events, I found out I needed the IVIG treatment.
It seemed/seems this would be my last step.
If I needed IVIG, I would GET IVIG.
I immediately made phone calls.
I asked my General practitioner.
He said Yes.
I was ecstatic.
Then he left the room for 15 minutes, came back, and said, “On second thought: No.”
He said, “Well, you’ve made it this far so you can make it a few more weeks without treatment.”
Did he just say, you haven’t croaked yet so like let’s roll the dice- your chances are good, I thought, did he just fucking say that.

He sent me to specialists instead.
I was hopeful the Infectious Disease doctor would help.
She immediately turned me away, “your case is too complicated for me.”
I’M QUOTING: NOT PARAPHRASING.

I went to a Rheumatologist.
He said it would take him many months of hearing my history before he would even examine me.
He argued with me about the existence of Lyme Disease.
I didn’t want to fight anymore so I cried.
He diagnosed me three months later with Chronic Fatigue Syndrome or Fibromyalgia.
He said, ‘I’ve never seen someone so young, so sick. I’m sorry.”
That didn’t make me feel better.

I saw an Immunologist.
I felt hopeful.
He said I had asthma, am severely allergic to dust and mold, and have a fucked immune system.
Then he went on a mysterious leave of absence.

I casually told my Neurologist that I needed the IVIG thinking he couldn’t give it to me.
He said, “Oh you want IVIG, I’ll give you IVIG.”
What a fucking miracle.
I was so excited.

I was excited until the pending authorization was the catalyst for months of fighting and phone calls.
It got denied because Lyme disease was listed as my condition.
It took months to sort out and appeal.
It finally got approved. I was thrilled.
I called the infusion center to make an appointment all sweaty with giddiness
There was a problem. An insurance problem.
It wasn’t going to work.
I cried.
A week went by. I got sent to a new infusion center.
I called them. There was a new and more complicated problem this time.
But at least I got the approval, people said.
Stay grateful stay grateful. Eat well. Do what’s in your control. 

Weeks, maybe one month, later, after countless phone calls, I had a date to start infusion.
I was nervous it would fall through, but chose to be positive.
I was beyond excited.
I posted on social media what a triumph it was.
I started telling people! I was preparing for my life-changer.
It was Friday, and I was due to start on Monday.
Friday at 4 pm, I got a phone call.
It fell through again.
There was a new problem with the home nurses. I needed to find a different doctor for my first infusion; it was too high risk to start at home.
My body was overwhelmed, swinging on the pendulum between fierce excitement and fierce disappointment.
I wanted to give up so many times.

I did, thank the freaking heavens and angels, finally start my treatment one Wednesday afternoon.
How triumphant.
I received the drip everyday for 5 days.

There were side effects. I got a superficial blood clot.
I was up all night dry heaving with migraines. I had intense pain all through my body. I was spoon fed and carried to bed when I couldn’t lift my hand or stand up.
THAT was my triumph? My big celebration? I would prefer celebrating over a big job, an engagement, a new home, a pregnancy, a diploma, or anything else that wouldn’t result in dry heaving with migraines.

Onward.
Last month, in May, I received my second infusion.
It was easier. Much easier.
And I feel positive effects. I, again, feel hopeful.
But the authorization has run out, and the infusion center has to resubmit it to my insurance. I was scared for weeks.

I just found out that it has been approved. Exhale
But then, I have no idea where the next check is coming from because unemployment ended. I worry about my next meal. I worry about the side effects of treatment. I worry that I won’t get well. I’m sad, so sad, that this is how I’m spending my 28th year.

I talk to government-run agencies everyday just trying to get my needs met.I feel invisible.
They say, “Hopefully we will get this sorted in 3-6 months.”
3-6 months? Because I need to eat TODAY.

I’m running really low on ink in my silver-colored pen.
My positivity gasket is running on empty.
Gratitude is slipping through my hands; I’m too tired to hold it.
My heart is heavy, and my body wants to sleep.

YES, there’s been massive progress:  I can sit up, walk, climb stairs, smile, laugh,  I’ve put on weight, and I have color in my face. YES, I’m grateful for so many things. YES,
it will pass, like everything else does. And, YES, I still have remnants of belief in myself and my strength. I still have a thread of hope that I will heal completely.  But I am fucking tired.
The uncertainty is weighing on me. I don’t want to fight for my life anymore. I beg of you: hold me, ask me where it hurts, and how you can help because I am down, lonely and afraid.

Love,

Jackie

Share if you liked it:

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

Share if you liked it: