Must-Have Books for Healing

Hi beautiful friends, 

Few things make me happier than passing on something that has changed my life to YOU. Today I’m focusing on my must-reads for healing (from chronic illness.) Unfortunately, as you know, something else I’m passionate about is that we all have different experiences and different cellular structure and different minds, traumas, and pasts so what works for me won’t always benefit the you. I can only hope that something I say or suggest resonates for you and you have a similar feeling of holy-shit-this-is-what-I’ve been-searching-for. Because I so badly want you to feel and be at your most well and joyful, and I know that’s at your fingertips.

When I was bed-bound and raging with sleeplessness, pain, depression, and feral anxiety (just a few of the things), I needed all of the support I could get. Whether that be a text from a friend, a grounding meal, a funny movie, or an inspiring book. The things I could do while alone were my most precious gems in my box-of-tricks—I was alone a lot and self-soothing was both paramount and something I sucked at. The books listed below saved my ass. At first, I couldn’t read because of the terrible anxiety and confusion I experienced, but I could listen. I invested in an audible account, and I really believe that the books I listened to on repeat contributed a great deal to my getting well. As I started getting better, I could read again and books number three, four, and five  kept me moving along my inspired path to recovery.

Listed in order of importance: 

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9. How to Self- Advocate at the Doctor’s and Why it’s Crucial

Natasha Cecere, self-advocacy hero 

 

“You are allowed to be demanding and annoying about your health” 

 

Self- Advocacy:

This is a topic near and dear to my heart. Probably because it saved my life. I have always said that I am my own primary care-taker and everyone else is supplemental—including doctors. Someone I agree with once said, “the days of doctor knows best are OVER.”

For the first episode of 2018, I chose to bring on Natasha Cecere a knowledgeable and fierce self-advocate. It’s the resolution time of year, many of you are grabbing life by the balls—taking control where you’ve regrettably released the reins. As far as I’m concerned life= HEALTH. Take your health into your own hands, don’t simply surrender your most precious self to the “white coats in charge.”

In this episode, you’ll learn some easy self-advocacy tips and hopefully feel inspired to take control of your health.

Natasha Cecere:

After facing her own mortality due to a rare reaction to Hepatitis A, Natasha began educating herself on health and has since learned so much about her body and medicine that it is one of her great life passions. Her interest is especially strong in women’s health.

Natasha is an East-Coast transplant, living in Hollywood. She is an actor, storyteller, singer, and body and sex advocate. You can find her on Instagram @funnygal83

 

Listen to this Episode if you are Especially Interested IN:

  • What info to give your doctor and what it’s safe to withhold
  • Antibiotic misconceptions (and different tips for taking them)
  • Women’s health and how to make the most out of gyno. appointments
  • Mirena IUD complications and how to advocate for removal
  • Who is safe to use Mireana IUD and who shouldn’t
  • Why it’s worth it to look silly at the doctors office
  • Why you can’t care what others think
  • Listening to your body above all else
  • How to learn about your body
  • Quick and easy ways to advocate for yourself at doctor’s offices, in hospitals and at home.

 

Reminder: We are not doctors, and we highly suggest everyone see a doctor that they trust and respect. While we suggest you push for what you think is right for your own body, we also suggest getting multiple opinions from multiple doctors before making any rash decisions. 

Happy Listening!

xo

 

 

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Why I’m Matcha Obsessed

 

It’s all of the buzz right now: We are experiencing a bit of obnoxious “matcha madness” in Los Angeles,  and I’m joining in on the trend. But I’m hoping that as an ex-coffee junkie, my message is more palatable for the masses. Are you confused about what matcha is, WHY matcha is, and how the hell to make it? Allow me to explain..

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3. Lyme Disease: How to Self-Care with a Demanding Job

Halley Feiffer

 

Lyme disease:

 

Halley Feiffer ignored her symptoms until they were drastically affecting her lifestyle. It was backstage in the middle of a performance, when she realized that she couldn’t rely on booking effortless jobs and she needed to go to the doctor. Through treating Lyme and strategically monitoring her self-care, today Halley manages a jam-packed schedule and demanding atmospheres. Find out how in this episode!

More about Halley:

Halley Feiffer is a bi-coastal actress and writer. Currently she is writing on “Kidding,” the upcoming Showtime series starring Jim Carrey. Halley was diagnosed with Lyme disease three years ago in New York City.

Listen to this episode if you are especially interested in:

  • How to keep working with your symptoms!
  • How to self-care with a demanding job
  • How to manage stress
  • Dr. Richard Horowitz
  • Antibiotics vs. holistic treatment
  • Lyme diet options

Happy listening!

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Clean Eating: My “Controversial” Diet

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I gave up booze and drugs at the startling age of 17—the age many (or most?) people are just getting started. Jaws still drop when I mention in passing that I, in fact, do not drink and haven’t in over a decade, but the news doesn’t land with the same deafening impact it did in my early twenties when my peers found such a choice to be blasphemous. I am no stranger to the often judgmental— but sometimes inquisitive— reaction I get from strangers or new friends (or even “friends”) about my lifestyle choices. Choice. If you want to call it that. But I quit drinking because it was destroying me and I really want to live…fully and vibrantly. And in order to LIVE fully, vibrantly, and, ironically, limitlessly—I now follow an extremely strict diet as well, a diet that generates the same jaw-dropping, mind-boggling reaction— “Why do you do that to yourself?  What DO you eat? Do you have any fun, ever? How do you do it?” I’d like to address these questions I am faced with almost daily.

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How I Step Into the New Year

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It was hours before midnight, and I was already wasted. Running around in shredded jeans that put my hip bones on display, a tight red, spaghetti- strap shirt that revealed the push- up- bra- boobs of a teenager, and a pair of red sunglasses just to complete the “Fear and Loathing in Las Vegas” look, I was not making mom and dad proud. The New Years Eve party I attended was at my own house—my parents’ friends, my friends, and my brother’s friends shared the space in one excitable gathering. We had been throwing these parties for years, but that would be our last one—the last time we could pretend to be somewhat functional. Although, I’m not sure we had anyone fooled.  My father was only half present that year, leaving the room every so often to take a hit— an omen for what was to come. The clock was running out on 2003, and I had no resolutions for 2004. I was 15 and lost. All of the vitality I had lived with most of my life was just gone, eaten up by poison. I wanted out, I sought escape every chance I got. Around ten PM, with a red Dixie cup in hand, I sloppily took a stand atop our coffee table. Inspired by the music of The Spice Girls (I had picked out the song), I made a loud, screechy toast, “You know,” I shouted, “people never keep their resolutions… so THIS YEAR, I’m going to make a resolution to drink and be fucked up as much as possible because THAT’S a resolution I know I’ll keep.” Laughing so hard, feeling so clever, I stumbled off the table, found my way to the bathroom and spent the remainder of the night puking my guts up. I missed midnight. Technically, I was off to a good start considering my resolution, right?

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Treating Anxiety, Part II

Part I here. 

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My hips led me around a Montauk boutique. My jean skirt was too short, my acrylic nails too long, and my shirt too tight. I drank too much, smoked too many cigarettes and cursed more than a “young lady should.” I was too wild, too antsy, too dishonest, too sexy. I was monitoring my movement around the store, looking for mirrors so I could watch myself sway by. Deeply immersed in the passion of self-obsession, I could hear my mother’s muted voice trying to pull me out of my too-cool-for-you attitude, “Jack, jack, this is cute, isn’t it?” She held up a beige shirt,  “Ugh, no mom,” immediately dismissing her excitement, “I don’t like it.” “Well, it’s not for you, it’s for me,” she said annoyed. “Oh. Well then sure.”  I was 15. My mother and I were vacationing in Montauk and we were killing time shopping. At the register,  I spotted a brown leather bracelet. I picked it up to see what was inscribed in it and read, “feel the fear and do it anyway,” written in italic script.  I was cosmically drawn to the saying. It made me feel like the badass I was determined to be. My life had been so overtaken by mood altering substances and experiences that I was numb to my childhood, numb to my passions, numb to love. SO, when I saw that bracelet, I thought, “yeah, feel the fear of overdosing and take all of the drugs anyway, yeah feel like you’re going to die from the insane adventure and do it anyway, be afraid of drunk driving and do it anyway, feel the fear of mixing all of the booze, of fucking the wrong guy, and DO IT ANYWAY.” It was with that M.O that I begged my mother to buy me the bracelet. Because she was in denial of my M.O, she agreed. I wore it everyday,  I followed its direction, and it got me into trouble. That is, until I learned how to use that saying to my life’s benefit.

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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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The Symptoms, Part One: Depression

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

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

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

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

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

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

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

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

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

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

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

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

With Fun and Love,

Jackie

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A Note for my Caretakers

caretakers

Dear Caretakers,

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

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

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

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

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

With Fun and Love,

Jackie

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