Me, Too: Extended

 

 

I saw the Facebook statuses—my newsfeed was full of brave women coming forward, openly talking about personal experiences with sexual harassment… #metoo, and then some. And it made me—me the “healing out loud” girl—uncomfortable. What in the fuck? I couldn’t believe that this patriarchy-conditioned part of me that I thought was dead was suddenly awake for a feeding. In my upbringing, I was trained to hear “sexual harassment” and immediately follow the words with “always the woman’s fault.” That means I have blamed myself for countless horrifying interactions. I didn’t claim victim; I have seen myself as the perp. The 2016 election started to break down those old ideas I had; I started to see misogyny and sexual abuse more clearly and honestly, but I still sat in my self-made jail with a head full of regret and shame for all of the sexual harassment I thought I caused myself. But ALL of these women were writing #metoo with personal stories included, armed with the keys to my handcuffs, ready to show me the escape route if I wanted to be free. I did want to be free. I had been standing atop the cliff, peering over the edge for hours thinking, jump jump jump, it will feel good. And in a sudden burst of willingness, I went for it:

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On Mucus, Urine, and Peace

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Mucus:

I’m home sick—”normal” sick. I have plump yellow and green stuff building up, breaking up, and making its way out. The “normal- sick” sensation remains one to rejoice over. I didn’t experience this for a couple of years—something about Lyme making it impossible for my immune system to work enough to fight common infection—I don’t get it. But what I DO get is that yellow stuff equals normal infection and that’s the kinda thing I’m after. So, hooray, right? Well, not quite.

A couple of weeks ago, I received an emergency phone call from my immunologist. I’m on Medi-cal. For the most part, Medi-cal doctors do not emergency- phone- call me—I’m lucky if they know who I am, can find my files, or call me back after I leave a 911 message. It’s been one of the most frustrating things about being sick: bad doctors, poor treatment. But as the most unpleasant of pleasant surprises, a couple of weeks ago, I got two emergency phone calls, one after the other, “Jacqueline, we need you to come in first thing in the morning to review your recent blood work and get the process started for the IVIG.It’s very important we get going.” I know what my numbers are (I’ve been following them closely and consistently telling the doctor that I need to get started on the IVIG) but still the phone call scared me. It must be bad if the doctor is going out of his way to call, I thought. 

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I am Lonely; I am Loved

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Throughout illness, I could not simply or efficiently answer the question I was so often presented with: “how are you?” I’m sure the answer seemed like an obvious, “not good.” To  the outside eye— I was undeniably amidst a shipwreck. I was skinny and pale and frail and depressed and being told there was probably no way out.  But “not good” didn’t resonate—it wasn’t true. The experience of being sick  felt (feels/felt/feels) dynamic.  I was learning indispensable lessons. I was developing as a human, deepening as a spirit and as a creative. I was gaining a wealth of knowledge and a sea of love and compassion. How could I be miserable about such a beautiful makeover?  I was very hopeful—always, almost painfully hopeful. I once read that “hope is the opiate for the truly hopeless.” I wondered if that was me. I still wonder if that is me. Maybe it is, but it feels more true to say that it has been light and dark all at once. All of my life, maybe—I have felt the lightness in equal proportion to the darkness. Amongst these monumental inconsistencies was the desperate loneliness I felt while absorbing more love than I even knew existed. A love not only from my fellows but also from myself. But what brings me to this post is not necessarily the reflection of the past (although, I am very much reflecting) but the feeling I have presently: Why after getting so much healthier do I still sometimes feel so completely heartbreakingly alone?

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I Don’t Want to Lock up my Feelings

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When I was home for the holidays, a basket full of papers and old chachkies was handed to me. I was meant to sort through it and throw stuff out. It was like a grab-bag of old family memories—things that brought a smile to my face, others that made me grimace. I pulled out a purple book, decorated with Esmerelda from the Hunchback of Notre Dame. I immediately recognized it as the first journal I ever kept—I was 11. An age that I was unafraid of my passions, an age that offered a soft FULL heart and a spirt that, as an adult, I can’t quite find. As I read some of the brilliantly sweet things I wrote, I felt sad that I ended up taking such a violent detour, I felt inspired by my young self, and I laughed…hard.

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Treating Anxiety, Part I

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In 1998, at ten years old, I discovered that Mama Cass died choking on a ham sandwich. Maybe I heard it on TV. Or maybe I was eavesdropping on some random adult chatter. Or maybe my mother told me during one of my relentless questioning sessions about all of her favorite musicians.  It doesn’t really matter. What matters is that with that news, I was hit— for no rational reason— with life-changing fear. My brain grabbed onto this idea of “death -by -choking” like a shark grabs its prey: What if I choke in the school lunchroom,  nobody hears me over the chatter and I die? Days passed as that thought flipped and flopped and tossed and turned restlessly—violently—through my brain. Choke and die, choke and die, choke and die.  I sat through school lunches half invested in the innocent adolescent conversations about lipstick and half obsessed with my imminent death. One March day, the thoughts were so overbearing that when I took a sip of my peach flavored Snapple, it went down the wrong pipe, coughing commenced, and I came into contact with my first debilitating panic attack.

“Are you ok? Jackie, are you ok?”  The teacher spoke to me over the microphone, “stand up, stand up.” I stood up. I was overheated from both embarrassment and physical stress. I was already unpopular, but now an entire cafeteria of cruel ten and eleven year olds were staring at me.  I gasped for breath and simultaneously considered my poor wardrobe choice that day. If I had known I was going to be the center of attention, I wouldn’t have worn that stupid pink cardigan and those unbecoming gray sweatpants. “Nod your head, nod your head,” the teacher was saying, “do we have to do the Heimlich?” I knew they didn’t have to do the Heimlich. After all, it was only Snapple that I was “choking” on. But I certainly wasn’t going to admit that, not after the spectacle I was creating. My coughing slowly subsided, and a  breath of relief rippled through the couple hundred kids in the cafeteria…  immediately followed by an outburst laughter. I sat down, wanting to hide, and suddenly—just like that— all of the ease I had previously lived with was gone. Who knew that it was a luxury to be able to interact with your peers, go to school, eat lunch, and exist in the world without a consistent feeling of impending doom holding you back?  I tried to act normal. I walked with the herd to my next class, took my seat, stared at the chalkboard, and wrung my sweaty hands seeking some sort of solace in myself. Something was infinitely unsafe, but I didn’t know what so I couldn’t even protect myself. The walls were closing in on me, my friends looked like enemies, words were muttered, faces were fuzzy, and I burst into tears.

I was sent to the nurse’s office. I could barely speak by the time I got there. Sweating through that stupid fleece cardigan, I was crying so hard that I could only gasp out one  comprehensible word at a time, “I—choked. and. am. —scared.” The nurse looked at me confused and harshly, got me a five ounce dixie cup of water, and led me to a small, poorly lit,  corner room. There was one beige metal folding chair meant for me to collect myself on. “Sit in here and calm down,” she said.  I took the seat thinking I’d rather be anywhere else or maybe nowhere at all. I wanted a hug desperately. That is what I wanted. As the nurse closed the door, I heard her say to her colleague, “I mean, seriously, she should be able to control herself, she’s ten years old. What’s wrong with her? My God.” Did she think I couldn’t hear her? I was so embarrassed, so ashamed.  I didn’t know what was wrong with me, and if I could have controlled it—like she was suggesting— I certainly would have.

By the time I got home that day, I had decided that I should probably never leave my bedroom again and that I should definitely never eat again. If it was up to me, I would have lived a very small life. My parents got in the way of my ideas.

I cried through dinner one night, trying to spoon a small amount of plain broth into my mouth but every time I looked at the bowl of liquid, I was hit with the memory of “choking” in the lunchroom. I just cried and shook until my father lost his cool, dropped his fork and said, “What’re you gonna do? Never eat again? If you went outside and tripped and fell, would you never go outside again?”  I felt pathetic. What I was experiencing was NOT logical and could not be beaten with logic.

My mother held me in bed that night as i sobbed and sobbed. I said, “I wish I had some physical illness. Even cancer. Anything but this. It’s so scary.” And I meant it. I was in unthinkable pain. Thankfully, my mother understood what I was experiencing due to her own turbulent history with panic attacks and, as a by-product, she pushed me. She wasn’t going to let me become a slave to my anxiety. It was strategic, and it was brilliant. She sent me to school everyday, she denied me medication even though doctor’s suggested it, and I was forced to take part in all daily commitments whether I sobbed through them or not.  To this day, I consider it the greatest gift my mother gave me. To this day, I consider it her shining moment as a parent.

When my seventh grade field day came around, I was hit with a new deepening wave of panic. Who knows why. There was no real why. At 7:30 am, I hid in the closet sobbing, “I’m not going. Please, please, please don’t make me go.” I begged for an hour until the bus came and my mother lovingly pushed me out the door. I went. I mean, I WAS forced.  I went full of terror, but I went. And, as the day went on under the suburban sun, the fearful pangs subsided. The distraction was helping. The sun was helping. Exercise was helping. I was easily able to take part in field day activities, and I even won a flimsy second place ribbon for a short-distance race. By the end of the day, I felt great, and I was deeply proud of myself.  I sprinted through my door that afternoon, impatiently shouting at my mother, “mom, mom. I had the best day ever. Thank you for making me go! Look, I won 2nd place in the sprint!” She was so proud of me. In that one day, I had instanteously grown muscle where there wasn’t any, I had a new life experience that would forever change the way I lived—a reference point for what it felt like to feel the fear and do it anyway which remains a saying I try to live by. Curiously—or not so curiously— I didn’t have another panic attack for seven years.

At nineteen years old, everything I had learned about coping with anxiety was put to the test. My panic attacks came back, and this time they were not so easily defeated.

To be continued….

Love,

Jackie

 

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What this Election Season Made Me See, and Why I’m With Her.

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I am a woman with a hard-hearted history towards women’s issues—I was quick to unite with sexist men in an effort to gain their attention and approval. I’m ashamed to say that I thought women were being over-dramatic and whiney about what I once also considered “locker room talk.” I didn’t understand why women found cat calling so annoying and disrespectful. I was all “free attention? what’s the problem?” I came from the “I’m asking for it” line of thinking. Yes, even around rape. My father and brother made it very clear that whatever came my way…I WAS asking for it, that I was a “whore”, and that if men ever had a bar fight it was the woman’s fault. Because women don’t know how to keep their mouths shut. And now we have a big-mouthed MAN named Donald Trump, and his words may kill millions of people. His slandering words directed at women have made me sick to my stomach—partially because it’s not my first time hearing them. His center stage presence has propelled me to ruminate about WHY I ever thought it was okay to speak about women like he does— why I once was the girl who preferred to be “one of the guys,” how it feels to be a girl who has been sexually degraded, mistreated, and abused. How it feels to be a terrified girl. And also how it feels to be an incredibly powerful and intelligent woman. His words have been like gasoline to my inner-fire for FEMALE.

I spent most of my life trying to be more masculine. I was brought up to believe that the only asset women had was their sexual power—their hotness. And if that’s really all we had to offer then we better be very very hot. It seemed like by my generation,  the expectation of aprons and dish gloves lifted and was replaced with an expectation for smoking hot sex, perfect vaginas, perfect faces and perfect bodies. I got “lucky” and happened to be a very pretty young woman. I didn’t need hair dye, diets, or proactiv to be considered attractive.  I strategized for my father’s love by leading with red-hot sexuality and supplementing with  “manly” qualities: a firm handshake, a foul mouth, drinking, being low maintenance, being a smoker, a wide strut, ego, confidence, drive, having a pair of “balls,” being drama free, being a go-getter, provider, money earner, heavy hitter, etc. Of course this definition of manly is what my upbringing showed me; these qualities do not represent manliness. My target was to be the sexiest girl in the room while also being “one of the guys.” When I was about seven, I told my father I wanted to be a football player. Trust me, I didn’t. I just wanted his attention. That’s the way it starts. That’s the innocent version of needing Daddy’s attention. The more grown up version is unsavory to say the least.

I wanted to make my crack smoking, cheating, lying father proud. He was the STRENGTH. He made the money. He drove the Porsche, and he used his money to control us. I wanted to be like him. Hard like him. Not soft and weak like my mom. I cheated, I lied, and I did drugs. I desperately sought love and affection from men. I took my clothes off in front of crowds, I danced on tables, and I made out with all of the girls FOR all of the boys, and precarious situations were the result. I was told that any trouble was my own fault because I was a “slut.” But really, I was a young teenager with minimal guidance, and I didn’t know how else to get “love.”

I was 16 and my father was leaving the house to go see his new mistress. I stood in the kitchen, watching him go, not knowing if I’d see him again. I begged him, pleaded with him, to come back to us when my eye caught something strange sticking out of his “briefcase.” It wasn’t really a briefcase anymore. It was an overflowing sack of dregs and crap, but there was this shiny photo sticking out that looked familiar. It was my headshot. “Dad, why do you have my headshots in that briefcase?” He laughed and twitched and spurted out from a thumping heart, “Oh! I carry them around and tell people you’re my wife.” I was confounded and silenced. And he left. What people? His drug dealers? And also, sadly, I felt loved. At least he wants me. Did he tell the creep he copped from the other day, I wondered. He had sat me down around that time to boast about how he saved some girls from drug-den torment. Apparently, his dealer had a couple of girls over and when my dad paid for the drugs, the dealer said, “watch this.” The dealer tossed the drugs and told the naked girls to get down on all fours and “fetch.” My father bragged to me, ” I kicked him down and told him that I have a daughter and how dare he treat women like that. I beat the shit out of him, Jack.” I stared at him baffled AND totally jealous. He was taking care of those girls and not me. Did I need to degrade myself that much to get his attention? And also I really hoped he didn’t show that guy my picture. Because dealers were coming to our house seeking out my dad and I was really scared that they had seen my picture. Because I am a woman and constantly afraid of being raped.

Where was my dad when I was 17 and ended up in an empty parking lot with a guy three times my age and three times my size. A guy who was supposed to be helping me “straighten out my life” took me somewhere private and told me to sit on his lap—that I needed a hug. I cringed as he pulled me over to him but I didn’t know how to stop him because I was afraid to use my voice and I didn’t know how. Because I didn’t want to excite him further. Besides, it seemed like I hadn’t been hugged in a while.

When Hillary and Trump took the stage, I  didn’t actively care so much about women’s issues —well, not beyond our right to choose. Initially, I was not a huge Hillary fan. You know why?

I was a pre adolescent when Bill Clinton was in office and what I remember about the Clintons is this: Chelsea Clinton was “ugly” and Hillary was laughable. Why? Chelsea was a bookish looking teenager and Hillary cared more about the state of affairs than her body or her dresses. For that, the pair were the butt of many jokes in my home. Because they weren’t sexy.

 

And as the 2016 election rolled on, I was getting more and more fired up for Hillary and more and more angry at Trump.  Here’s just a sliver of what Donald Trump has said about women:

He  has called women “bimbos,” “pigs,” “gold diggers,” and “FAT” He’s compared women’s faces to the faces of dogs.

He said, “If Hillary Clinton can’t satisy her husband, what makes her think she can satisfy America?” Ouch.

He tweeted, “While Bette Midler is an extremely unattractive woman. I refuse to say that because I always insist on being politically correct.” Unattractive? Bette Midler founded the New York Restoration Project in 1995. That’s your city, Donald. How about thank you?

His favorite part of Pulp Fiction is when Sam tells the guy to tell his girlfriend to be cool. He said, “‘Bitch be cool.’ I love those lines,” Donald said.

Donald Trump said women should be punished for having abortions. I was scared because my boyfriend was abusive and I didn’t want to live a life like my mother lived and I didn’t want my child to experience an upbringing like I had. I was with the guy because he was just like my father and I didn’t know better yet. You want to punish me?

Donald Trump joked that he would date his daughter. “If Ivanka wasn’t my daughter perhaps I’d be dating her.” Yeah, my dad thought that was funny, too. It fucked me up. Ivanka, my heart goes out to you and to your mother who accused your father of rape. 

He said this about Katarina Witt,  the gold-winnning olympic athlete: “Wonderful looking while on the ice but up close and personal, she could only be described as attractive if you like a woman with a bad complexion who is built like a linebacker”.

He mocked Rosie O’Donnells weight. Multiple times. Rosie started the Rosie’s For All Kids Foundation for disadvantaged children.  What has Donald done? No, really—WHAT has he done?

Oh, he ran beauty pageants and you know how he ran them… He had pageant girls parade in front of him so he could separate who he found attractive and who he didn’t. Before the pageant even began, he sent girls home. Thank you for contributing more image issues, humiliation and insecurity in women world-wide.

He tweeted: “26,000 unreported sexual assaults in the military- only 238 convictions. What did these geniuses expect when they put men and women together?” THEY EXPECTED MEN NOT TO RAPE. 

Maybe that’s confusing for Donald Trump considering he has had three rape allegations against him.

And then there was the— now infamous— tape of him bragging about all of his “pussy-grabbing” and his ability to kiss whoever he wants because he’s famous. That’s terribly bothersome, but what bothered me more about the video was the woman who greeted him immediately after his comments with a big smile and a great dress. The way he kissed her. The sly and creepy way he put his arm around her, and the way she seemed to not care. The way she hung her sex up on his arm and the way he carried it with pride and said “Melania said it’s ok.”  I’ve been that pretty girl.  It’s not rewarding. And I can’t stomach that being a woman’s role in society anymore.

After that video, a new tweet surfaced: #repealthe19thamendment . And that’s when my heart broke and I got really scared. This is the man my country elected to run for President? And, he’s not even far behind. Oh my god. How many people feel this way about women?

I do not need any more time in my life dictated by an ego maniacal sexist. By the way, my father destroyed his life and ours in the process. I have direct experience with what an ego like that can do. There’s no money—only debt. There’s no love, only psych wards, and hospitals, and heartbreak. That’s all. I will do everything I can to negate this crazy belief that what we have to offer as women is sex, attractiveness, “a pleasing aesthetic.” I will be part of making a woman president. Not because she’s a woman and not because she fits some bullshit standard but because she is smarter. She has more experience. She has self-control. She is stronger. She has self-restraint. She has WORKED HARDER. She is wiser. She has compassion. She cares. Her fortitude is admirable. Her policies are logical. She HAS policies.  She deserves to be the next President of the United States. And I’ve never been so proud to be FEMALE.

 

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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

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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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No Inner-Child Gets Left Behind

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Stored trauma is Lyme disease’s best friend. They play off of each other like school yard bullies relentlessly tormenting the mind, body, and spirit. Lyme is an opportunistic disease and tends to jump on those whose systems are already compromised. Personally, I had a weakened immune system from years of infections and antibiotics, I had been breathing in mold and smoke all of my life, I had those heavy -metal- filled amalgams in my mouth, and I had—maybe most importantly—a shitload of stored trauma. Healing the past has been a vital part of  my recovery; I went into the basement and the attic and met the old memories, had a new experience with them, and then went to the freakin’ Materials Recovery Facility where they got recycled into something new and sparkly.  But how to do that? Getting sick stripped me of all of my effective coping mechanisms. I had nothing— no distractions, no booze, cigarettes, cake, no over exercising, and no late-night coquetry (well, Ian got some of that). I had only myself—a self that was ignored for most of my life, a self that I was scared of, a self that I often absued. Caring for myself and healing all of the built up heartache meant getting in touch with my inner-child (yup. deep breath. I am talking inner-child work. It might get weird. But if you’re here to save your life then maybe it’s time to try weird shit?)—that little girl inside who had been shouting out for attention for two decades. The little girl who I just kept hushing, “you want to rest? Well, too bad, I want to party.” We were going to have to team up to fight this thing. I was going to have to pay attention to all of her needs. My parents weren’t showing up for me and I was either going to cry over that every single day or take the power back into my hands and “re-parent” myself. My boyfriend and my friends made an incredible support system, but there were too many times where I was left alone and panicked. It’s frightening to go into the darkness alone—naturally, we want someone to hold our hand through the haunted house tour. And that’s ok. Hold a hand. God knows, I hold so many hands. But, acquiring the art of being my own primary care-taker while everyone else acted as support instead of the other way around enhanced my life, my freedom, and my health.  I needed to find a way to rely on myself, to hold myself through the hard times, have my own back, and thoroughly heal from all of that old nasty trauma.

I was an adult before I ever got to be a kid, and I was pissed off about it. Full of resistance, I sought people out who would care for me the way my parents never did. Collecting father figures and mother figures was my favorite hobby—I had a whole china closet full of them and, yet, no real fulfillment. My collection brought me short-lived comfort; my internal-void remained. I was introduced to inner-child work in 2013  when I was detoxing from a wildly fucked up romance. In an effort to snag what little dignity I had left and not text or call this dude, my friend suggested I start telling myself everything that I wanted him to tell me. When the quick-fix cravings hit, she would say, ” put your hand on your heart and say, ‘I love you. I’ve got you.’Imagine a photo of you as a little girl that is just so cute and precious and start taking care of that girl.” I was down. Anything to get my life back. I found myself picturing my little self and organically saying, “I’m your guardian now and I’m going to take really good care of you.” That became my mantra. I said it all day ,everyday, so that I could make positive choices for myself: like going on a hike instead of calling someone who would inevitably hurt me. I practiced just enough self-love to keep me from getting involved in another demoralizing situation, and (for the skeptics) I’m here to tell you that my practice paid off—I have been blessed with a beautiful relationship. However,  when I got bit by a tick just six months later,  my inner-child got tossed away and quieted again. She suddenly needed way too fucking much from me (sick people are needy as fuck), and I had no idea how to give it to her.

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I spent a long time beating myself up for being sick—maybe a year. It felt like my fault, like I was weak, powerless, or had bad Karma. There were moments where I was so angry at myself for not being able to “pull it together” that I considered physically harming myself. I couldn’t stand the sight of myself in the mirror. Every single day was agony. I couldn’t tell what was worse —the physical symptoms or the way I emotionally tormented myself. My internal dialogue went on repeat, “Get better. Be better. What is wrong with you? You’re disgusting. You’re weak.” Oh hi mom and dad!  That voice started keeping me awake at night. I lied in bed seething in pain and with a monster in my head, “you’re faking it. You’re not even really sick. This is just a ploy to get people to pay attention to you. Stop being so afraid. You’re not dying. You are being SUCH A BABY.” I only got sicker. Shockingly, that cruel self-talk wasn’t doing the trick. I was not “pulling myself up by my boot straps” at all. In fact, I was getting to a point where I could hardly put on my own shoes. As my symptoms ramped up and not a single doctor had a complete answer, I got willing to do whatever it was going to take—to do whatever was in my power— to get well.

I said farewell to the audiobook “A People’s History of the United States” which took up  most of my cell phone space with its 35 hours of “entertainment” and purchased—instead—self-help books like, “SelfCompassion,” by Kristin Neff and “You Can Heal your Life,” by Louise Hay. I listened to those calming voices preaching self-tenderness in the car, in bed, and while I made myself food. I was in research mode, a good student of self-love, entirely teachable. It was one thing to care of myself enough so that I wouldn’t reach out to a toxic dude, but how do I take care of and love a sick person? Like a really sick person?  I went practical—the basics— I started with the 101 course, if you will.  I used to work in childcare—I have looked after hundreds of children of all ages. I used my behavior as a caregiver  as my blueprint for my own self-care.  I would never let a child go hungry or thirsty or without sunscreen. I wouldn’t let a kid fall asleep without brushing their teeth and listening to a calming story in their comfiest PJ’s. If a child woke up afraid, I would comfort them.If they were too hot, I would take layers off and give them some water; too cold, I would give them layers and hold them tight. It seems so simple, but I certainly wasn’t that careful with myself on a daily basis. There’s no “age plateau” where we stop needing those simple things; we just get better at tolerating the discomfort.  I had to learn that it didn’t make me “high-maintenance” to need the basic human comforts. I didn’t let myself go hungry, thirsty,  without a nap, or without my vegetables. That was a tremendous beginning for me, but it wasn’t nearly enough.

My insomnia was a son- of- a- bitch. When hard-drugs weren’t working, I needed to find a way to soothe myself enough into a sleep. That’s how I started a dialogue with “little me.”   I would put one hand on my heart and one on my belly and picture little Jackie. My imagination— which sometimes works like the Beauty and the Beast mirror— showed me a toddler. She sat alone on a metal folding chair in the middle of a dark room. Her shoe laces were untied and she wore grungy sweats. She was so lonely, afraid, and dying for someone to come save her.  And, in my head (because, hello, Ian sleeps next to me and I was still trying to seem *somewhat* normal) I would tell her things like, “you’re OK, I’ve got you. I know this is so so scary. And I know you feel so bad. Yes, I feel that crazy pain all through our body. It’s real. I’ve got you. I will take the best care of you that I can. You’re not making this up. I love you.” It was usually the only thing that would calm me down. And, eventually, I started imagining myself hugging her, and ASKING, “what do you need little Jackie?”  And then I’d listen. This is truly one of the fucking winning practices in healing. My inner-child is smart as fuck. Every single time I ask “what’s up?” she’s like, “this is what’s up! Please fix it!”  Sometimes, she wants things like Advil or a cool cloth and other times, she wants a hug, but A LOT of the time, she really wants to have FUN and be free. It’s my job to give that to her. When a child is sick, parents do the bulk of the work to get them well, right? A Doctor only steps in for prescriptions and a diagnosis. So, it only makes sense, that we need to constantly care for ourselves the same way.

I was getting noticeably better. I had  this direct line of communication to my inner- child.We were having ping-pong conversations before I knew it, and I started knowing exactly how to care for myself at all times. I no longer saw little me in that lonely metal folding chair. She grew up a little bit, wearing bright colors and a high ponytail. She was healing and needed to play and be free more and more. The more I did this, the healthier I got, and the less I needed from others— including my parents. Being able to meet my own needs time and time again left me feeling, ultimately,  free.

Now I’m in the home-stretch and I’ve got this one problem: there’s a wildly hurt teenager in me that i really do not want to commune with. So much damage was done in those years, they were the most dangerous years of my life—because my parents were more unreliable and more destructive than ever, but, on top of their ruination, I was harming myself.  I turned all of my anger inwards and started self-medicating to make the pain stop.  I remember once around 16 when I was so stoned I hadn’t stopped laughing for three hours… or maybe 30 seconds? There was no such thing as time. I said to my best friend, “You know, if I ever met myself, I would absolutely hate her. We would never get along.” We both laughed so hard, knowing it was true. I hated myself. I shudder thinking about those years, between the way I behaved in public and the lunatic man who merely resembled my dad that lurked around corners in my “home.” So, can’t I just put that all to rest? Tie it up in a neat little box, pack it away in the attic, and just forget about it?  Apparently not.

I sat at my shrink’s office confessing how deeply I’m aching for Ian, (who’s Ian? Keep up!) the man I love who I don’t get to join on his big adventure for another 4 weeks. “I don’t know. We are both in so much pain. And it’s sweet, but it also feels just…excruciating,” I said. She suggested, like a good pain in the ass shrink, that it wasn’t just “love” and just “missing” each other, but that it may be something deeper. Something probably relating to my family of origin. ugh I had to open my big mouth about Ian. Here we go again. “Really? I think that’s maybe a psycho-babble stretch. I mean, how many times am I really going to miss my dad?” I retorted. “Exactly,” she said, “I think you miss your dad. That’s not to say that you don’t miss Ian and love Ian and that you guys aren’t yearning for each other. It’s the excruciating pain you’re experiencing that I think might have something to do with your dad.” With the same immediate shock value of a popped balloon, I broke and started to cry. Oh, fuck.

I kept that idea safely on the periphery for the next few days, not letting it quite into or out of my sight. I got on Skype to do a distance-healing with the dazzling, vital, sweet and madly intuitive  Emily, and as I detailed the week, I mentioned the possibility, “My therapist thinks that Ian’s departure has opened up my “dad” wounds and that all of the hollow emptiness I feel in my heart is actually from my father. I mean, whatever, it’s almost too obvious. So obvious I don’t really buy it.” But Emily, bless her,  was intrigued. I had to open my big mouth again. Thankfully, her instict had been precise on earlier occasions so I trust her. In our work together that day, she had me travel back to my past, finding the moment that left me with that hollow emptiness. In my meditation,  I found this one tragic scene from when I was 17—the day I watched everything I knew about my nuclear family collapse in on itself. Emily had me watch the scene play out and then freeze everyone and everything except my younger self and my present self. Everyone was frozen —my father froze mid-stomp on his way to attack me, my mother froze with her head in her hands crying in the car, and our dog froze in a frantic bark. Emily said, “approach your past self and tell her all of the things that she needs to hear right in this moment.” I slowly approached her, feeling very skeptical. I judge her, and I don’t know how to comfort my teenage self. She’s so stabby.  So I started with the basics again. I took her by the hands and brought her to the curb to sit down, I got her some water, and I took her bubble-gum pink leopard coat off. It was a warm day in October and she was covered in sweat from running, screaming, crying, and being dressed in 1,000 awesomely torn up layers. I fanned her off, helped her breathe and got her some food. I parented her. All things that I needed that day, that year, my whole life. Finally, I was able to say some kind things, “I love you. it’s ok. you’re ok. You’re beautiful, and you’re doing the best you can. Don’t worry about your dad. I promise you are loved.” My 17-year-old self was feeling calmer and calmer, and as I walked her back to the car, to finish out this scene, I said, “I really love you, and I promise dad is just high. This isn’t about you.” My past self turned to me with a smirk, totally cool and calm, and said, “thank you, you know, I don’t even like him that much. I think this day is actually the beginning of my freedom.”

I realized, as I came out of this time traveling experience that once I gave myself all the love I needed in that moment, I didn’t need my dad anymore and the experience completely transformed—from one of traumatizing heartbreak, to one of total freedom and joy. I also—wait for it—didn’t feel empty without Ian. With the willingness to heal this part of my life, I’ve had more and more memories surface over the last few days leaving me feelng irrationally unsafe in this world. That’s the risk of doing this work—all the stuff really does fucking surface. But UP AND OUT, BABY, my body has limited storage space and I need room for joy! I know now to go into the darkness, to let it surface, and heal it instead of ignoring it and powering through. Because no matter how much I try to fight it with my mind, there are things that my body will not let me forget.

Two nights ago, I laid awake panicking. Why, I wondered, while tears soaked my pillow, why am I especially panicked in my own home, in my own bed? Why, in my unscathed, sweet home today, do I feel terrified, like someone is lurking around every corner. I thought I’d ask that teenage version of myself what was up since that has worked so well in the past. Again, I was willing to do what it took to fall asleep. I did the ol’ trick: one hand on my heart, one on my belly, and I asked, “what is going on? Why is it at home that you’re so afraid?” In my imagination, we were sitting on the same curb outside of my teenage “home” that I comforted her on in my last meditation.  She said, “Well, it’s not outside that’s scary. It’s in there,” she nodded to the front door, “that’s where I fear for my life.” Ding ding ding.  My home was always the scariest place to be. There was no resting in my house, resting left you vulnerable to god knows what. By high school, I was realistically safer outside of my home. So, of course I feel like enemies are at every window or just outside of my door. Of course. But I am safe now. In this present moment, I have given myself a very safe life. And, so, with the knowledge of why I’m freaking out, I can start comforting myself, “you’re safe. you’re loved. It’s over. It’s OK.” All of that healing in the middle of the night when no one else was around to comfort me? It’s proof that I have everything I need within.

People ask me all of the time if Ian has been my primary caregiver. And, I usually say something like, “it has taken a village to get me well, but, in the end, I have been my own primary caregiver.” I am not a victim today. I can choose how to take care of myself, who takes care of me, and furthermore/even more radically I can give my past self all that she’s been looking. ALL of my past selves. Even the needy, over sexualized, annoying and sweetly confused teenager. I’m calling off the search party! Now, I can get get busy collecting memories instead of mother and father figures.

With fun, and love,

Jackie

 

 

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The Power of Whispering “Please”

 

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I was in a yoga class last Tuesday afternoon, August 30th, 2016. I had spent an hour “opening up” (insert: eye roll), breathing, and getting in touch with the silence and stillness of my body, feeling so grateful for how far I’ve come on my way to wellness. After savasana, I felt all calm and centered, all like “mmm namaste.” Slowly packing up my mat and water bottle, I swiped my phone out of airplane mode simultaneously driving my energy to erratic and off-center. A message from my cousin immediately popped up that read, “I’m sure you’ve heard the news. Will you be at the funeral?” PANIC. I hadn’t heard the news. I was about to hear the news. My 23-year-old cousin passed away tragically in the earliest hours of Tuesday morning. “Passed away” suggests some sort of peaceful movement into another realm, but, I can assure you, nothing about it felt peaceful. Not to me. For me, it was more of a disorienting impact, like when those cartoon characters see stars after getting hit really hard. I couldn’t breathe. The same room I had just gotten all namaste in, held space for my hysterical tears. I immediately thought of his mother—notably one of my favorite people on this planet— and his brother. My heart aches deeply for them. I made a fierce and confident decision in that moment, on my knees in tears, that no matter what, I would be at the funeral. Yes, I knew it was across the country, I knew my health wasn’t super stable, and I knew that I was super short on cash, but I also knew that I WOULD be there. My (almost) three-year long struggle with Lyme disease has taught me a thing or two or three or four about compassion, about humanity, and about empathy. Well “you” taught me, actually. You know who you are—all of the people who have had my back again and again and again over the last couple of years—you’re the reason I know how necessary it is to show up. After I pulled myself together from the shock of the news—out of the hysterics, floating into more a cloudy daze of confusion—I got in my car and drove home to look up airline tickets. Apparently, I had spoken too soon and too confidently. The cheapest ticket was $930.00, and painfully out of my price range. And yet, I went, and I went fully available to my family. How in the fuck, you ask? Because just when I thought I had been shown my fair share of love in this lifetime, I was proven wrong, love saved the day. . . again. As it turns out, there might not be a shortage on that shit.

I’ve always been way more comfortable in the role of care-taker. I truly believed that I didn’t need— “you” clearly needed love and support and help, but, me? I’d be just fine. I’m tough enough, I can take it, I thought. As a kid, I would watch my brother or mother suffer under my father’s cruelty and wish/pray that I could just trade places with them, thinking that I had some sort of magical armor that they didn’t. I played that role for a good long while— giving, giving, giving until I used up all of my energy, got Lyme disease and had nothing left to give. OK, I had to stop giving, but I certainly wasn’t going to ask for anything. GASP. How could I? I would just take care of myself, like I always had.

I continued working as a waitress (I don’t suggest this) to desperately try to pay bills. I refused almost every offer of accompaniment to the doctor, assuming I would just need a couple of months and lots of antibiotics to get back to my “normal life.” Without my asking, a couple of friends jumped in over this short period— my dear friend ran a $1,500 fundraiser so I could cover some antibiotics, another friend took me to one doctor’s appointment, my mom paid for a months worth of an intramuscular antibiotic, and my boyfriend held me while I cried a few times. I thought, at that point, that I had used up my predetermined supply of love, help, and support one gets in this lifetime; as though, upon entering the world, we are handed an allotted number of chips or tickets, and each time we are loved, we hand one in, making us want to “save them for a rainy day.”

My storm came. I took a nose dive into the unfathomable darkness of Lyme disease and multi systemic chronic illness. If I was going to get well or survive, I was going to NEED help—next-level help. I certainly didn’t know how to ask or what to even ask for. It seemed like I needed too much—like I’d probably die waiting for my needs to be met. Finding myself in fetal position, terrified and disturbed, I whispered out into the universe, “please.” Just. . . please. Looking back, it seems like all I had to do—once I surrendered to reality— was sit back and ACCEPT what people were offering me. Here is just a glimpse into what people have done for me over the last two years:

You fed me : One friend flew across the country just to cook me batches of healthy food. My freezer was full of cauliflower soup, lentil stew, lamb burgers, tzatziki sauce, and carrot ginger dressing. Another friend delivers me groceries or home-made meals during every single IVIG treatment. I’ve been treated to countless lunches, dinners, green juices, and smoothies. I have been sent gift cards to Whole Foods or Gelsons just…randomly. I’ve opened my front door to surprise packages from friends and family chock full of nutritious sustenance—from meat, to protein bars, to nuts and tea. hehe. My boyfriend has spoon-fed me / force-fed me more times than I can count, and my family—oh, my lovely family that knows nothing about the insane diet I’m on worked their asses off last time I saw them to meet my dietary restrictions. THANK YOU.

You tucked me in: I kid you not, I have been rocked to sleep. My back has seen many loving hands, and my forehead has been calmly caressed by countless. I have been sung to, massaged, and even CHANGED into pajamas. YUP. Those were the days…when I’d be so sick I couldn’t take my own pants off. More than one person has changed me into comfortable clothing. More than one person has seen to it that I fell asleep. More than one person offered their bed or couch or arms when I needed comfort. THANK YOU.

You STILL take me to the doctor: In extreme ways and not so extreme ways, I have been taken to the doctor. One woman who suffers her own struggle with Lyme disease, took me to get blood drawn before she ever even met me a couple of years ago. Other friends held my hand for blood draws or took me to the doctor when I simply COULD NOT do it alone anymore. And then there were three special people who did long-term treatments with me. One friend took me to Florida and did a week-long doctor visit with me. He wheeled me around in a wheel chair so I could be a tourist in between doctor appointments and bedtime. Another friend traveled to Indonesia with me for two months, reading me books, singing to me, and cooking for me while all of my blood got removed, restored, and returned. My boyfriend met us during that treatment and has sat through days and day and days of IVIG treatment with me and doctor’s visits and ER visits with me, entertaining me with things like, “Heads up.”  THANK YOU.

You paid my way: We raised over $18,000 to help cure me. I think about 300 people donated to my health. 300 people! Each one of those souls played a part in my recovery. Some people donated 1,000 dollars and other donated 5.00 and every penny cracked me open a little more, showing me just how abundant love is. I needed every cent that came my way, and I still do. A sweet friend of mine just purchased me a very expensive air purifier that I couldn’t afford, my aunt and uncle got me a much-needed new pair of shoes, and my mama buys me supplements. I wouldn’t have had a chance in hell without your help. A certain “you” gifted me a laptop. UH, THANKS. And a certain “you” gifted me crazy expensive supplements, coffee enema supplies, meals, and striaght-up cash. THANK YOU.

You LOVE me: You have listened to me, you have let me cry on your shoulder, you have had endless compassion and kindness for me. You have talked to me for hours, given me advice, loaned me special weird healing things, cried with me, cried for me, sent loving texts, made me laugh, came to visit, taken me for walks, called to check in, skyped with me, and cheered me the fuck on. THANK YOU.

That’s just grazing the surface of the last two years. Here’s what happened in one day:

Last Tuesday, August 30th, 2016, I sat talking to two of my favorite humans about my cousin’s passing, “I don’t know what to do,” I said, “I want to be with my family, but I don’t know how to get there. I can’t afford it. It hurts to be so far away.” And one of those women, a woman who knows too much about death, said, “do you want me to put it on my credit card?” Just as I was saying “no. . . that’s too much..” my other friend casually said, “Why don’t I see if I have miles.” I’m still not super good at accepting help. I STILL think I’ve used up my fair-share so instead of saying, “oh that’d be great, thank you,” I was more like, “well. I mean. If you’d be willing and..” awkward weird space-filling chatter and shifting and nail-biting. While I got weird, she found a flight and booked it. When I said, “you’re an incredible human,” she said, “nah, just a human. You’ll do it for someone else one day.” Two people were willing to get me to my cousin’s funeral. And two other people helped me pack/decide what to wear, AND another person drove me to the airport at 4:30 in the morning the next day. I swear all I did was whisper please.

I landed in South Carolina on Thursday afternoon, walking into the heartbreak. I’m wordless. I just love them so much, and I don’t know what else to say about it.  I watched person after person flood the home of his mother with food, flowers, and hugs. I watched her struggle to accept all of the kindness. I watched people step up and pay for expensive and necessary things because death is not only so heartbreaking for the loved ones, but it is also bank-breaking. Grief is not a weekend deal. It goes on for a long, long time and so should support.

Before I left, I told my his mother, “keep accepting the help. Everyone wants to help you. Let them.” She looked at me and said, “But I’ve already gotten so much help over the last year.” She has been in the throes of her own serious health struggle this year. “There’s no point at which you’ve used up help, support and love. There’s always more,” I said. And I KNOW that to be true because of what “you” have shown me.

For some reason, I still slip back into thinking that I’ve used up my chips. I landed back in LA around 1 am on Sunday night and, get this,  two different friends offered to pick me up from the airport. At 1 am! Just when I thought I’ve had enough, my phone rings, a text comes through, a note comes in the mail, someone donates to my fundraiser, or I get a much needed hug.

I love you, my friends and family. I only hope I can give back an iota of what’s been given to me. Thank you, Lyme disease, for giving me an opportunity to learn about love so that I can show up during this trying time. And *please*, if you read this and know my family, show up for them right now and in the months to come. It takes a freakin village and every single person counts, every single hand, counts. And, I beg of you (I’m not whispering now) if YOU are the person who needs help, ask for it. Ask anyone.Because shame is deadly.

Here is my cousin’s memorial fund.

love upon love upon love,

Jackie

 

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