What’s Going On?

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It was forty-six years ago that Marvin Gaye was wondering what the fuck was going on. People were coming back (or not coming back) from Vietnam having suffered terribly, drug-use was peaking, and police-brutality was a common response to young activists. But what’s forty-six years? There has been suffering, fighting, hate, and a whole lot of what in the living fuck is going on for centuries; since the beginning of man, there has been war. I’m no expert on history. Ask me when WWI broke out: It’s a guarantee I’ll have the facts wrong. For a good portion of my twenties, it wasn’t just history that I lacked an understanding of: it was current events (which I’m still NO EXPERT on- everyday I have to read more about “Brexit” because it’s so hard for me to understand). As I’ve previously posted about, I didn’t follow the news. People condoned my behavior, “you’re better off, there’s nothing good to read anyway. It’s all so negative and fear-driven.” It still never sat right with me that I wasn’t following what was happening in the world at large- maybe because I have always been surrounded by people- intellectually well-bred New Yorkers – that knew everything. I found myself on the outside, sort of… stumped. Maybe it was that I didn’t want to know, or maybe it was just a maturity thing. But I have a hunch that I had too much personal garbage to sort through and recycle before I could see the impressive mountain of garbage that lied just a foot away from the tip of my nose. Strangely, getting sick, healing from the inside out, gave me space to see beyond just ME. I started following. The “breaking-news” updates were popping up in my email in rapid succession: “this murder, that murder, another murder, dead, dead, death, shoot up, guns, guns, gunman kills x number of people..” I sat down with Jason one night at a cafe in Los Angeles, “I feel so powerless,” I said, “I want to do something, but I guess we can’t really DO anything- do you feel that way?” Jason, wise and calm, said, “Well no actually. I did my research, and I found a foundation for gun-control that I donate to monthly.” Inspiration struck. Imagine that? I can DO something. This post isn’t much of anything: I have no links for you to donate to, and I have no new information for you. All I have here is compassion and all I ask is that, if you read this, you take a second to recognize and fully meet the pain that is out there. I personally CANNOT write another ANYTHING without simply acknowledging what is going on.

I do not want to hide from the news because it’s frightening and “negative.” I feel that I owe victims around the world the respect to acknowledge their suffering. There is a tremendous amount of suffering. Three people were killed in Oregon today, June 27th, two were killed yesterday in different states, and another two the day before in Texas. I had to go searching for that information; they didn’t make the headlines because they’re not famous and because “3” isn’t close to the 41 killed in Turkey, or the 49 that were killed a couple of weeks ago in Orlando. It feels like there’s no time to remember the victims of Paris, San Bernardino, Brussels, UCLA, Oregon, and holy shit ETC. It’s SO MUCH.

Yes, it’s common knowledge that too many people are dying at the hand of guns, AND too many people want to kill- to excess. Too many people are losing family members; children and parents. OK- so we unload that ton of garbage that is currently sitting on the surface, and then there lies the corruption in Washington, crisis in Eastern Europe, the Rohingya people, rape, violence towards women, starving children, hate crimes, racism, the environment, the food industry, the people who are dying because they can’t pay their medical bills, poisoned water, natural disasters,spreading viruses, homelessness, mental illness, and etc. Etc because I don’t know where it ends.

I went to a 3 hour loving-kindness mediation sit yesterday afternoon. I went because all of the proceeds went to Oneorlando. I went because I needed to sit in a space where I could acknowledge what’s going on, meet it, send love, and process my own fear and sadness (which, by the way, is also very real). No, I don’t necessarily think it reverberated out into the world or anything, but it certainly didn’t harm anyone. One of my greatest obstacles in being sick has been the resentment that comes up around people who are dismissive of the illness, the pain. People who are so scared of it, they abandon ship, or ignore me, as though I am contagious. I want to just say to whoever I can, whoever is suffering: I see you. There’s no problem too small or too big, you are seen, your pain is valid, and it is my responsibility to do what I can, when I can. It is my responsibility to give love, compassion, money, or service. THE BEST PART? There’s space for all of it. I can see the darkness and the light. There’s pain, but there is always an abundance of beauty. So, yeah, the news might really suck A WHOLE LOT OF ASS these days, but I’d rather experience this life as one, as a community in the greatest sense of the word. I want to have each others’ backs.

HONESTLY, it’s just nice that I’m finally slightly relieved from the deep obsession with myself. We are all a little relieved about that.

What’s going on is not a new question and the worldwide devastation is nothing new either. But I think about that song, and it did it’s part to spread love and compassion. Maybe it changed someone’s life. Maybe it changed someone’s mind. Ian and I went to see Toots & The Maytals last week, and they dedicated the show to Orlando- it was beautiful and I watched hundreds of people hold space for ALL of the victims. We can all do a little bit of what those musicians do. Whatever is going on- I love you.

With so much love for all of you out there and, of course, holding space for the fun, too,

Jackie

Health Tip Tuesday: Eat Garlic

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Consuming raw garlic works as a natural antibiotic! Amazing, right? It fights fungal infections AND yeast which I found so fascinating and exciting AND curious that one time I stuck a clove of garlic up my vagina ..and that’s how I ended up LOSING a whole clove of garlic up my vagina. Apparently you can stick a clove up there if you’re worried about yeast infections so I did just for funnies, and then I LOST IT. Definitely, be sure to attach a thread or cheese cloth to the garlic.

The way I consume garlic these days (everyday, actually- so I ALWAYS smell like garlic) is by crushing it up and putting it on top of salads with olive oil and avocado.

It’s always one of my main suggestions especially for Lyme suffers.

Here is a link to some helpful garlic-consuming-instructions to follow:

Avoid These 6 Common Mistakes When Using Garlic As an Antibiotic

PS: That photo up there is me shouting at my friend Eric, “I lost the garlic!”

Fun and Love,

Jackie

Just Keep Swimming

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I said, “I am down, lonely and afraid.” To better help you understand how I’ve felt over the last couple years, I used the analogy of a person laid out on the concrete, getting their face bashed in. I asked all of you to meet me down there, hold me, ask me where it hurts, and what you can do to help. Many of you did just that, and it gave me that little bit of strength I needed to get up. I am standing. I may be a little weathered, but I am upright and ready to walk on. Actually, that’s metaphorical because I’m actually horizontal on the couch with two IV’s in my arms, but I’ve eaten today, I’ve rested, I’ve given love and received love, I put some laundry away, and I’m writing this. If you are struggling, if you are obsessing over what the fuck, why the fuck, and how the fuck, the one  piece of tangible advice that never fails me was said by Dory from Finding Nemo: “Just keep swimming.” It was also said by like a bazillion other people in a variation of other words, BUT Dory said it best if you ask me, and I’d like to honor the release of “Finding Dory.” I’ve been practicing this for years though the situation I’m currently in has been the greatest challenge. There have been countless times I’ve wanted to just stop and sink, but I’ve experienced the benefits of  keeping on too many times in my life to give up now.

I was heart-broken (again) a few years ago. I was stuck in bed, restricted by panic. It had been light out recently enough that I still hadn’t turned any lamps on. As it grew darker outside, it grew darker inside, which reflected MY insides. I’m so sensitive during that hour-long adjustment when the light turns to dark. I can do the light and I can do the dark, but the in-between, the purgatory, the new, the gray- THAT I do not like. I laid flat crying, fuck it’s already night-time, he still hasn’t responded to my texts, I can’t get out of bed. I called a woman who was 20 years my senior and sobbed to her, “I can’t get out of bed! He hasn’t responded,” snot filled my shirt, I choked on some phlegm, and I made a whole case supporting my sadness and paralysis. She was so compassionate- this beautiful  woman with 3 children, and a host of her own more threatening struggles, took the time to talk me through the pain of “he hasn’t responded to my texts.” She said, “It’s OK sweetie, listen, I want you to get up and make the bed. That’s all you have to do. Get up and make the bed. Do the dishes, take a shower, come over for dinner. That’s ALL you have to do. Get up and make the bed.” I swung my legs around, I got to a standing position, I turned a lamp on, and I made the bed. It’s easier to keep moving when already in motion – that’s like simple science, I think. I did the dishes, and I took a shower and I went to dinner. I didn’t feel good, but I certainly didn’t feel any worse than when I was laying in bed. That wasn’t my first lesson in “just keep swimming,” but it simplified something I had been hearing/practicing for years.

Both of my parents taught me this lesson- through their words and actions: they made life so fucking hard that I had no choice but to learn to tread water or drown. When I was 12 and made the beautifully stupid decision to be an actress when I grew up, my Father challenged me to study the craft, and I did. I studied it as much as I possibly could for a girl that age. When I got nervous that I wouldn’t succeed, he said, “Doesn’t matter, you never fail if you don’t quit.” I wonder sometimes what would have happened if I didn’t hear that so clearly: Would I have quit after so much rejection? Maybe. Years later, during my first year of college, I called him in an attempt to connect. He had already slipped out of my hands into the world of insane drug use, but this was in my denial phase. I called him very upset- why he was my first phone call is a lesson in psychology 101, but regardless, it worked out because he said something I’ve never forgotten: “There’s only one thing you need to know all through life. ONLY ONE NECESSARY PIECE OF ADVICE. The only rule you ever need to follow is ‘just do the next right thing’.” Just do the next right thing. I’ve found that to be true- it’s all I ever need to do.

My Mother told me a story once that really stuck with me, too. When she was dealing with the true horrors of being married to a violent alcoholic and trying to raise two children, she had many mornings where just  seeing the daylight pained her. She told me that during those times, she started taking out one book at a time from our encyclopedia collection (oh my- I’m showing my age. I grew up with encyclopedias!). She went from A-Z and studied. She learned something new everyday which led to some college courses, which led to meeting a professor that changed her life, which led to TWO Master degrees. Just keep swimming you get places.

I feel lucky to have  the ability to persevere, to persist, to try again, to get up, stand up and TAKE ONE STEP. I comfort myself often by visualizing the path I’m on, and I think “well if I just keep walking forward, I WILL get healthier, I WILL get a job, I WILL grow as a partner and a friend and a human.” It doesn’t  all happen at once. It’s in the small little steps, one foot in front of the other, that we make progress. I know that last week’s post was a hard one to swallow for some people, and I know that it was a binge on comfort food for others. I’ve had a lot of pain in my life; I’ve had plenty of obstacles to surmount- some self-inflicted and others where my part was victim, straight-up. It brings me so much comfort time and time again that, in this world where I’m powerless over so much, the power to keep walking is mine. I always have a choice about whether or not I want to get out of bed, make the bed, do the dishes, feed myself, write, apply for jobs, apply for government assistance, make that next phone call, find that new doctor, go to the next audition. The most freeing part: I don’t have to FEEL LIKE doing any of it, I just have to do it and shit gets done. I keep moving forward, growing, walking the path, and, MY GOD, at some point, you acquire all the tools you need to surpass the weeds, your legs are so strong you can climb any hill, your knees are so strong you can go through any valley and when an earthquake hits, somehow, you’ve developed enough balance to stay standing.

PS: First stop after Iv treatment: FINDING DORY.

WITH FUN AND LOVE,

JACKIE

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

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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

10 Things my Mother Taught Me:

giggle w mom

10. On Anatomy: How to use a tampon: I was a late bloomer; I didn’t get my period until I was nearing 14. I had also been lying about having it for some time since it was considered heinous in my junior high to not have to visit the bathroom every 2 hours to change your tampon (a bloody piece of cotton you stuffed inside yourself aka: the symbol of womanhood)? So, when I did finally pop, it was very exciting… UNTIL I was invited over to my best friend’s house to go in the pool during “that time of the month”— I couldn’t simply go for a swim. Enter..My first attempt at THE TAMPON. My mother brought some “OB’s” into the bathroom, handed me one then waited outside the door for me to finish. “WHAT HOLE DO I PUT IT IN?” I shouted. Ah, the days of innocence, when I didn’t know where that hole was. “Not the hole you pee out of,” she said. “I can’t find it…oh wait I think I found it… now what?” “Now you push it in.” OW. Was she kidding? NOPE. NO WAY. Nothing should go in there. “It can’t be that hole, it hurts too much—can you just help me…doesn’t water stop the bleeding anyway?” “No, you have to use a tampon,” she said, “It might be easier if you lay on your back.”  I needed more space -that’s how we ended up in my bedroom. We tried every size, every kind of tampon, and every position the physical form could possibly endure. I was frustrated. “Can’t you just do it for me?” I finally asked all shameless and stuff. She paused, exhaled, deliberated, scrunched her face and said, “no.” I can’t even remember if we (I ) got the tampon in that day, but we both learned very important things: I learned which hole to put it in, and she learned that I was still a virgin.

9.On the Arts: Music (i.e Michael Jackson is a man): My mother wasn’t/ isn’t known for her cleanliness. The way I knew it was tidying time was when the music was on and my mom was dancing and singing around the house. She’d do a one two step, and then fluff a pillow. One two step, snap her fingers, sway, and wipe something off. While she shuffled, I was very busy in an imaginary life more satisfying than that reality. One day, however, I heard a sudden burst of , “A BOO BA BOO BA BOO. a boo ba boo ba boo,” which threatened the fun even my own imagination could have. It won me over, “who is this? I love her,” I said and started dancing with my mom. “It’s not a girl..that’s a boys voice — it’s Michael Jackson and the Jackson 5. The song is called ABC.” Obnoxiously, now jumping around with my mom, I said, “THAT’S A BOOOYYY?” If it wasn’t The Jackson 5, it was Stevie Wonder, Sinead O’Connor, Tom Petty, Lucinda Williams, Ricki Lee Jones, The Eagles, The Rolling Stones, or Joni Mitchell. Oh, and I LOVED JONI. There were always Joni Mitchell and Ricki Lee Jones CD’s in my Mom’s car, and I could never remember which one I liked. I accidentally slipped in Ricki Lee Jones expecting to hear “Big Yellow Taxi” once and was apparently nearly traumatized, “THIS is not the woman who sings about the mean old daddy, is it? I want the one who sings about the mean old daddy.”  Joni sings about the mean old daddy and the milk and toast and honey, too. Ricki Lee Jones sings about nothing because I can’t understand anything she says. So my mom taught me some of the artists I don’t like as well.

8. On Safety: Kidnappers have all kinds of tricks: YUP. I guess parents have to teach us this stuff, huh? One night, IN THE DARK, we were walking to the car in a quiet, suburban grocery store parking lot (already scary), and my mother casually said, “Now be careful, kidnappers have a new way of getting kids— they’ve been hiding under cars so at night they grab your ankles and take you before you get in the car.” I must have lost color in my face and maybe like never gained it back? Here I am, 28, still thinking about it; If I walk to the car alone at night, I walk haltingly. I tremble inside a little trying to get in the car before the monster under the car can catch my ankles and eat me or something? Also, what an incredibly dumb move, kidnappers..what if you miss your 10 seconds of ankle vulnerability? Do you just get run over?? Nonetheless, thanks for this gem, Mom—it has literally been of zero help.

7. On Health: Drinking too much water can kill you: I drink a lot of water, and I highly suggest everyone drink a lot of water. When I ask my mother how much water she drinks, she says things like, “Well there’s ice in the coca cola I drink- that counts you know.” And then I get on her, “that does not count and that is not enough water.” And one day, in the middle of one of these arguments where I was being self-righteous about hydration my mom said, “You’re such a hydration-bully, you know drinking too much water can kill you…you have to be careful, you can flood your brain with too many fluids.” COOL. WHAT? I did my research and, yes, it’s true, an obscene amount of water CAN kill you—it’s incredibly rare and very difficult to consume the amount of water it takes unless you’re doing a ton of physical activity. Later on, I asked my mom where she came to the conclusion that water is fatal and she said, “Oh I don’t know, my father saw it on the news once and always warned us because it really scared him so I guess that’s where.” And that is how “anxiety disorders” have gotten passed down from generation to generation.

6. On Grammar: The word is “proposed,” and pronounce your T’s: When I was a “cute” (actually I was considered ugly) little girl totally obsessed with marriage and babies (actually, I still am), I would take note any time somebody got engaged by stating,”He engaged to her, mom!” Or I would ask, “OOO, did he engage to her?” And, every single time, my mother would remind me with increasing frustration, “The word is proposed. He proposed. He proposed. He proposed. They GOT engaged.” huh, what’s this alien word proposed? That’s how I processed that information. It’s a good thing it sunk in at some point because I’m pretty sure Ian would be rethinking engaging to me if I still said that shit. The other thing she really gets on me about is the pronunciation of T’s. Getting very dramatic and aggressive every time a T is missed, putting on her best lazy, valley girl teenager body language and repeating, “it’s not Clin—iiinn,” and then changing to an upright professor who fucking took Shakespeare for a decade or something and says, “It’s ClinTon.” I don’t know why this has come up so many times around Bill and Hillary, but it has. Considering, I’m the only one in my immediate family who does not have a New York accent, I find this terribly annoying yet totally EFFECTIVE. I never want to miss a T around her— god forbid she shames me for being some ghetto valley girl. Moms are so annoying.

5. On hygiene: The more you shave, the hairier you’ll get: I shaved for the first time in the fifth grade because I was curious, sneaky, and trying to get an in on the popular kids. I sat in the bathtub, found a razor (it was probably rusty) and shaved. Afterwards, I ran downstairs all excited, “MOMMMMM!!! guess whaaaaaaat, I shaved, I shaved, I shaved!” I thought she’d be proud of me and say something like, “Oh wow! good job!” But, instead, her face morphed, she put a hand over her eyes like she just couldn’t take another problem in this house then slapped her leg and yelled, “WHY? You don’t need to shave, why would you do that without asking? You know… the more you shave, the hairier you get.” I was like, “WHAAAATTT? Seriously??” She reminded me again and again for the next five years until there were bigger problems like my Dad’s crack addiction. Many years later, I asked, “Why did you get so upset when I shaved for the first time?” And my Mother said, “Oh, I don’t know, I think I just wanted to be there with you. Also, now they’re saying that whole theory on shaving making you hairier is actually a myth so..” Oh, cool, more unnecessary anxiety.

4. On Cleanliness: Getting in bed with your jeans on is disgusting: Again, my mother is not known for her cleanliness or organization skills so when there is something that bothers her, my ears really spike up. We lived in NYC together so all day long, your body comes into contact with the most disgusting things like subway seats and other things that a million other people touched that day and haven’t been cleaned in a decade. Not to mention, that I would wear jeans like 6 times before actually washing them because who wants to go to the laundromat?? When I’d crawl into bed with my jeans on to read a book, my mother would say, “EW. your jeans have been touching subway seats all day, don’t sit in my bed with them.” It’s like her one ‘tidiness’ pet peeve, AND, I have to say, I appreciated this lesson. It’s true. That is fucking disgusting.

3. On Classic American Sayings: “I need this like I need a hole in my head”: It’s a good saying— very clear. When I write my book, this will be the title of the chapter on my childhood. It pretty much sums it all up. My dad was a maniac and all, but my mom had a lot more presence in my life. Her reactions to the storm were just as horrifying as the storm itself some days. She’d be so sad and so angry, repeating day in and day out, “I need this like I need a hole in my head.” And I didn’t understand it or know what it meant, but it was always my cue that mom was in a wicked bad mood and most likely dad was the reason for it and DEFINITELY everything would be better if I wasn’t alive. Too dark? too bad.

2. On SEX: How to give a blowjob: OK OK. That was for dramatic effect- she didn’t give me a visual tutorial or anything. But I DID request and receive in depth instructions. It’s not her fault, I was curious and an incredibly persistent MOFO; I would get the answers I was looking for. I came home from school one day. It had been another long day of pretending that I knew what the cool kids were talking about when they said words or phrases I had never heard in my life. I was 12, a little confused, and had enough. I confronted my mother in the basement while she was in the middle of her 25th viewing of Annie Hall and cracking open her 100th sunflower seed. I sat on the coffee table and said, Mom I have some serious questions..” Naievly, she said, “OK,” paused Woody Allen, and  got catapulted into a world even more uncomfortable than his affair with his step-daughter. I took it as far as I could, not letting her off the hook, “So, how do you get him hard again? Oh it needs to be hard before you have sex? You put your mouth on it and like all the way in? And so then he puts his mouth on your vagina? And that feels good? That’s what getting eaten out means?” Oh, it went on for an hour, at least. As uncomfortable as she was, she winced through the answers to every question including, “So you do this with dad?” EVERY MOTHER’S DREAM DAUGHTER.

1.On Strength, and Courage: Never give in to panic attacks– This is the most profound thing my mother ever taught me, and, in my opinion, her greatest accomplishment as my Mother. I may have been a late-blooming-menstruator; but panic attacks invaded my brain at the ripe young age of .. ten. The thing that set me off: I found out Mama Cass died choking on a ham sandwich and thought, what if I choke during lunch at school and nobody hears me? I spent the next couple years crying through classes, begging to go home, going through stints of not eating, and trying to convince myself that I was safe. But I was a child with no real life references that made me believe I was safe. My father was a real dick about it, but my mother would hold me in bed at night as I sobbed, “I’d rather have anything else but this. I’d rather have cancer.” No kidding— I have been in physical hell for over 2 years, and I would never trade it in for a life of panic attacks. My Mom had her own debilitating past/present struggles with panic attacks;  her knowledge and compassion were indispensable. All of my peers thought I was certifiable, but my mother kept explaining, AND she kept making me show up for life— she never bailed me out. My turning point was 7th grade field day. That morning, I had a wicked outbreak of panic. I was hysterical, “I’m not going, don’t make me go, I can’t go, please mom, please mom,” unable to breathe, I was pleading. I think I ended up in the closet at some point. My mom said, “You have to go, you cannot let anxiety win. I promise—if there was anything dangerous about this field day then I would not let you go. Please trust me.” I sort of did trust her but the panic was stronger. In the end, I was forced to get on the stupid bus. I went unhappily and full of terror.The kicker?  I had a fantastic day; I even won a first place ribbon for track. I’ll never forget running that track, feeling free or running through my door that afternoon shouting, “Mom . mom, I had the best day thank you so much for making me go!” And she said, “see that!” That was it. Anxiety has never controlled me. I moved to Hawaii, I moved to LA, and I’ve done everything in between that has ever scared me. Best part, I do not suffer from panic attacks anymore. I have shit loads of anxiety (SO DIFFERENT), but the beast that controlled me for so many years on and off has dissipated. I pass this on to all parents with children who have anxiety. Honestly, it’s not just the most important thing my Mother taught me; it’s been one of my greatest lessons in life. And, for that, I will be eternally grateful to my Mama. Thank you, mom, for not giving in to my demands. You were right. That’s what all Moms want to hear, right?

With Fun and Love,

Jackie

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