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?

I had never felt more alone in my life; I had never been more surrounded with love. The two have sat side by side for the last three years fighting for attention. Well which is it—are you lonely or grateful?  The gnawing ache of isolation— the total seclusion— paired with a swelling of people and homemade food and an abundance of affection. It was (is/was/is/was)  a loneliness that felt like punishment, that took a chainsaw to my heart, slicing away the pieces that felt uplifted and loved;  It was (is/was)  a groundbreaking, fascinating  joy and comfort I experienced as a community of protectors gathered around me. There was an army gathering for ME, with my life as their cause. But what was, in some ways, even more profound, was the experience of me leading the army. All  of those moments in the day when no one was there holding me up, I was handed an opportunity to hold myself. In my insomnia ridden madness, when my portion of the world was silenced and inaccessible, I got  to know myself. I got to learn to have a relationship with myself thus altering my life forever into a more comfortable existence. And yet, knowing myself, loving myself, and experiencing a hearty love all around me didn’t  completely cure the loneliness that comes with being sick (sick/ human/sick/human?).

I spent months—maybe a year, who knows—lying in bed during the sun-drenched hours. The hours one was “supposed” to be outside.  The majority of my days were spent in one corner of my bedroom locked inside of my body. My bed had lost the value it held in comfort at that point. A bed is only exciting, cozy and comfortable when you aren’t forced by some tyrannical bacteria to be in it all of the time. In a dire search for entertainment, I listened intently for every rustle in the trees and for the intricacies in the songs the birds sang. I know it’s 2017 and there are so many options for entertainment and it seems ludicrous that I would have to resort to the noises outside of my window to do the trick, but, at my sickest, I couldn’t tolerate the dynamic, intrusive noise of the television, I was too tired to read, and I was in too much pain to sleep. Not to mention, that I couldn’t emotionally tolerate the television,  I was unable to stomach the effortless joy and beauty that sitcom characters presented. Watching television added to my loneliness—it was a reminder that life was happening and I wasn’t invited to the party. It was the same when my neighbor had band practice. The mysterious band practice always happened in the evening. The sun light would be slowly departing —a measure of the time, of how little I’d done that day, of whether or not I had eaten anything, of the fact that bed time was coming and I wouldn’t be lucky enough to actually fall asleep. An aggressive depression barged in, another day gone and wasted. At the center of my depression were the faint sounds of drums and guitars— my peers able to express themselves creatively, easily taking part in their preferred art form.  Their music mocked me. Band practice would finish, the sky would be midnight blue, and I would be in the same—or similar— position that I started my day in. Closing my eyes made my heart race and dropped me into my body in a way that increased discomfort so, like an infant, I looked at everything. I looked at whatever the moonlight revealed to me outside of my window. I looked at the colors in my room, I listened to audio books about self-compassion. I heard my roommate get home verging on early morning hours after a full day of not being home. I could do that once. I could come and go, taking for granted the kind of energy it took to “come and go.” I could get home late. And I could easily and organically just…fall asleep. I missed those days.    My peers were at work, at yoga class, hiking, on set, traveling, at lunch dates and coffee dates, dancing, going to the movies, and I was still in bed. Those were the loneliest days of my life. Even when i went out, I was separate. I was more tired. I was too tired to converse. That kind of fatigue locks you in your body, in your bones into a sort of quick sand of self-pity. To look at the world and not feel a part of the world. I felt like I was behind one-sided mirror. I was able to see everyone, living, doing just fine, but I was alone, no one saw me, no one cared because I barely had the energy to speak up: we were separate, you could never know how bad I felt.

And yet, people called everyday. Countless people were willing to help me. People brought me food, they sat in that bed with me, in that corner of my room. My friends skyped with me, my mailman delivered multiple care packages, friends were willing to listen to me, to hold me while I cried. My boyfriend never once complained about all of the laying in bed we did—in fact, he let me know that he wanted to lay in bed with me because he was WITH ME. One of my best friends ran a fundraiser for me. People donated. People that I barely knew jumped on board to warrior for me, donating consistently, sharing on social media constantly. The love was ENDLESS. I was put in touch with person after person after person who also suffered from illness. And, in speaking and laughing with one another, loneliness often evaporated on the spot only to creep back in later. My dear friend came to Southeast Asia with me and took care of me for two months—feeding me, watching movies with me, healing with me. Another friend flew a more manageable distance across the states to wheel me to and from doctor’s appointments. I was written letters, poems, emails and texts all with the same sentiment: You’ve got this, and we’ve got you. My roommate whom I envied for her energy was a house of compassion and cheerleading. And,as for myself, I was growing more and more in love with myself everyday—not in a narcissistic pseudo-love way but in the way you innocently come to love a child. As I got to know myself, I got to forgive myself and have compassion for myself. I had ignored me for far too long and she was fucking screaming for some attention and acknowledgement. I met myself in person, and I wanted her autograph.

And with all of that experience, all of that love thrown at me in an almost reckless way, (we are talking love on top of love on top of love from all ends of the Earth: Need more? Have more.) I still felt (feel/felt/feel/felt) lonely as fuck. It’s not that I feel sick and separate anymore.  I feel entirely human again, albeit a bit tired and with maybe a smaller bandwidth than others. But I’m certainly not locked in a corner of my bedroom; I am cruising through the sunshine on foot. I’m cruising lonely. And loved. People kept telling me while I was very sick that no one could ever know or understand what I was feeling in my body. Because it’s impossible—the feelings exist only in my body, I can’t show you or share with you, we are separate and always will be. I can write about my experience and some people will relate but it remains my own. And so perhaps it’s just lonely to be human. A biological impenetrable wall. And maybe pre-illness, I was fighting that reality. I so needed “the pack,” I needed us to fully get one another and be together and do it together, and understand each other. I took no comfort in myself. I’m still sad that this experience of illness has been mine and mine only—that no one will ever be able to know all of the precise obstacles I had to experience through illness; and that I will never understand the precise obstacles you had to experience through illness or whatever you’ve gone through.  And there we go again: we are all having the same experience of individual experiences—we are all susceptible to be misunderstood. We are all alone, therefore we are never alone—we are one.

Fun and love and a broken isolation barrier,

Jackie

 

 

While we’re on the Topic of Women: What’s up with our Immune Systems?

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His teeth moved in his mouth like they weren’t cemented in place—were they dentures or just loose? Was it a twitch he had in his jaw that made his upper teeth push against his lower teeth rocking them forward like that? Was it just his age—will my teeth soften too one day? Jack was in his nineties, after all. That’s why I liked him so much—he had almost a century of life in him, nine decades of sorting through the garbage life can sometimes hand you—learning about humanity, empathy, and compassion.  His eyes had seen so much and his heart had held agony and released it more times than I could even imagine. I sat at a diner with him on Maui—the island I dubiously called home and the island he inhabited only in the winter, escaping Canada’s cold. Living there, I sometimes felt like I was either waiting for him to come or missing his presence—he was always on my mind. I met him a couple of years earlier when I was vacationing on Maui. I overheard him in a conversation talking calmly and precisely about the effects of growing up with alcoholism in the home. He didn’t grow up that way. It was not his path, but he seemed to understand what it was like and have a compassion that I had yet to meet. I stuck to him, maybe he became one of my collectible father figurines. I don’t really know. I only know that I wanted to learn from a man with a heart like his.  So I jumped on the opportunity to spend as much time with him as possible over those few winter months of 2011 in an effort to learn faster— I was dying to get ahead of myself, get ahead of my youthful age of 24, desperate to outsmart my humanity and escape the traps that maybe he fell into. Why, oh why, wasn’t I already at that plateau—that juicy plateau of nothingness and comfort. I was tired of navigating—no more obstacles, please.  I sat with my head resting on the top of the booth and said, “do you think I’ll be successful in life?”  Jack said, “I see you. I see how hard you’re trying. You have to be careful. You’re going to exhaust yourself. Women have a tendency to overdo it. I’ve seen it all of my life. Some women suffer in an effort to over achieve. If you’re not careful, you’re going to burn out way too early in life. I see it in you.” I knew he was right in that moment. I mean, we were just trying to have a cheeseburger on a Saturday night, but my head was diving into the future, diving into all the things I needed to accomplish between that night and the age of 34: I’ve gotta get home and do the dishes, dust the floor, have sex with my boyfriend, do we have enough sex, do I please him, do I want to live here, what am I going to do for a career if I’m not acting, when am I going to write my book and pick up my camera, and I haven’t read the news all week, and this all has to be done in the next 10 years so that I can have a child, and my god, I don’t think I want to do that on Maui so I should probably start preparing for my move to…somewhere..Colorado, Los Angeles, New York, Oahu. But I also  knew his caution wouldn’t work, I would have to experience the burn out myself before I was willing to change. I got sick with Lyme disease two years later: The ultimate burn-out. And from the moment I was diagnosed,  I couldn’t help but hear his sentiment on repeat in my brain. I was only 26 and ready to tap out. And when I started to meet woman after woman after woman who were all also sick with Lyme or autoimmune challenges, I started seriously pondering the source of our “sickliness.”

I know roughly 80 women (mostly under the age of 40) that are sick with Lyme, autoimmune disease, cancer, or mysterious and rare illnesses yet to be diagnosed or completely misunderstood. I know about ten men with similar struggles. These are all people I have directly spoken to—or befriended— over the last three years. 75% of those affected by autoimmune disease are women with thyroid diseases and lupus holding a 10:1 ratio. Autoimmune related illness is one of the top ten causes of death among females under the age of 64. People are dying—mostly women. It is estimated that 50 million Americans are suffering from autoimmune disease while around 13 million are suffering from cancer worldwide (just to give an idea of the magnitude).  The funding for cancer research is much higher than the funding for autoimmune diseases—never fucking mind Lyme funding or research.  As far as Lyme disease, there is no clear indicator if it affects women more than men. There hasn’t been enough research done because it is not recognized as a chronic or life-threatening condition. (It is. It is both of those things.) It seems to present differently —drastically so—between the sexes (perhaps due to hormones, our immune system response, and the fact that doctor’s don’t always hear us), but with Lyme I only have my personal experience: Everyone I have met with chronic, debilitating Lyme disease—upwards of 50 people— has been a woman with the exception of four men. FOUR. So WHY are women experiencing exaggerated illness specifically in our “child-bearing” years? Is it like my friend Jack said—because we are trying to be and do it all in the 21st century? Or is it because our immune systems are… whacky (I’m no doctor), or is it because we are being ignored by the medical community?

In too many instances, we aren’t taken seriously from the exam table. Doctor’s are quick to diagnose women as “hysterical.” Oh, I’m sorry, they don’t use that term today—because it’s not the 1600’s— the term “hysterical” has been changed to a more palatable yet still completely insulting “depressed” or “conversion disorder.” Jennifer Brea speaks eloquently and vulnerably on this topic and how it has affected her life on her most recent ted talk. Please watch it. On women, Brea says with grace: “Our immune systems are just as much a battleground for equality as the rest of our bodies.” I am lucky that I haven’t had to deal with the life-threatening consequences of this particular brand of dismissal. Sure, many doctor’s I’ve seen have denied Lyme disease’s existence and many have questioned if I was just really depressed and needed to get more exercise, but because I was lucky enough to have a physical manifestation on my body that produced the diagnosis of Lyme disease almost immediately, I could shrug the uninformed doctor’s off more quickly. Having a confirmed diagnosis from almost the start worked deeply in my favor. However, in order to get well, I had to become my own doctor because I couldn’t find a single MD who was willing to listen to me and truly care for me for a manageable price. I used doctors as extensions of my care, as my associates but I was the boss—again, as a woman, I had to take on more work and more stress to get the job done. I watch my boyfriend do little to no research on his physical issues. The doctor simply takes care of him—sure it’s not as complex as Lyme (that’s debatable), but not a single doctor has ever suggested that his pain was due to being under-exercised or over-sensitive. He talked; they listened. I have talked;  they have laughed.

But that can’t be the only reason we are getting hit harder. Is it because of our hormones? Is it because of the battleground we are biologically built with in order to reproduce? Hormones are complicated as fuck (again, I’m no doctor). High estrogen/ low estrogen and high progesterone/low progesterone can have disastrous effects on the system. Well what the fuck? How are we supposed to stay in balance at all times. Many of us take extra amounts of estrogen or progesterone (putting our bodies through the wringer so that we don’t get pregnant) in our birth control. It has been noted that excessive amounts of estrogen end up suppressing the thyroid and activity of NK cells (natural killer cells).It has been studied and it is hypothesized that the reason women get hit harder with autoimmune disease is due to the relationship between estrogen and the immune system.  We  KNOW that hormones play a role because it’s been researched that our illnesses are directly affected by our cycles: ovulation, menstruation, and menopause. We tend to experience a serious symptom upgrade during any of these cycles. Speaking for myself, it’s fucking brutal. But then there’s pregnancy. Pregnancy. The whole creating life thing we do.  Dr. Steven Gundry, an expert on autoimmune issues, says in response to why women are more affected than men:  “A woman’s immune system must be able to do two things that are diametrically opposed; always be on the lookout for pathogens like bacteria and virus and parasites, but simultaneously switch to totally ignoring the largest parasite ever when you become pregnant. I believe, along with many others, that this dual role contributes to confusion for the immune system.” And, on top of that, some say that some fetal cells get leftover in our bodies after birth waging war confusing the shit out of our immune system. WHAT? OK so our bodies are much more complex than our male couterpart. Does that explain it? It hasn’t been proven.

Autoimmune disease and Lyme disease and their acute effects on women are being examined and heard, but then what about all of the other women I know that are suffering in similar fashions without a diagnosis. Or with a different diagnosis. I just keep coming back to my old friend Jack. Are we way too hard on ourselves? Are we burning out trying to climb to the top of our career, have children, be a homemaker, and a good friend  and do it all within our chilbearing years? It’s a lot to ask for, isn’t it? It’s stressful—are our minds constantly busy and stressed trying to be everything to everyone? Is it our reaction to stress? Is it the pressure of our biological instict to  be a shoulder to cry on while men find a way to quite literally “turn it off” and compartmentalize pain?  None of this is to negate the stress that men experience. I wouldn’t trade places with them—I really wouldn’t. I just want to offer an honest look at our complex bodies and minds and in the hopes that we ease up on ourselves—maybe even expect less of ourselves (EEEK). That we slow down. That we rest more. That we keep speaking up for ourselves and being heard.  That we come together and love one another. That we take just some of the pressure off in an effort to live presently and more fully.

Fun and love,

Jackie

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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.

I was a certifiable love addict, dreamer, and  codependent. But I also had the kind of innocent wisdom that we can use today, in this angering time. I can only hope it brings a smile to your face as well, reminding you of the simpler things and inspiring you to love.

“A journal is thoughts and feelings. It’s important. It’s called…MY BOOK OF TRUE FEELINGS.” 

“I’m excited. Did you ever know what you want and then never let go of that feeling of wanting and nervousness if you’re gonna take the right road or not? Well, I want to be an actress. I have that feeling. It’s actually kind of a scary feeling. I’m feeling tired. Goodnight.” 

“Why do I want some dreamy way of getting a boyfriend? Ugh hormones….not really.” 

“I want a baby. Not like every other girl wants a baby.More than that. I feel like I could be the real #1 mom. I dream about that day where I get all sweaty and push so hard and cry and say ‘it’s a girl/boy’ I’m going to love that day and that baby more than anything.” 

“I can’t wait for that moment where I know that I’m falling in love. I want to say I love you to a man and mean it. I don’t know why some people say it when they don’t mean it. I know what love is. And I’m lucky that I know what it feels like and I love the feeling. It feels like nothing could happen. You’re nourished. It’s like sweetness of sugar which always gets you hyper and excited. You close your eyes and dream up this wonderful and clueless feeling and have that feeling every minute of the day. I hear the whistle of the wind and the beat of my heart. And at the same time I hear ‘I love you.’ “

“I’ve been thinking and I’ve decided to look at the way things are better than worse. I want to tell you about this book. I got it from Oma and Opa and used it as a diary. But I wrote stupid things so I ripped those pages out and made it the book of true feelings. I took the lock off because I don’t want to lock up my feelings. I don’t even hide the book!” 

“Mom had to get a tissue sample this morning. I was so nervous. It felt like the world stopped and I had to hold it in my hands until I knew Mom was OK. It was hard for me. It took strength. She’s OK. I was relieved when I came home from school and found out it was just menopause. The world began again and as I opened my sweaty hands and released my breath everything felt like a rose at that moment.” 

“Some people can have so much fun spinning in circles but sometimes you have to watch your step. You could end up falling.” 

“I’ve been unreal lately. I’m not sure exactly what I’m talking about but it’s a feeling that I have. What’s next? The feeling of lateness, cruelness, sadness? If only we could know ahead of time.You have to take a guess and when your guess is wrong it could do damage.”If heaven has ponies and big fluffy clouds then why does earth have to be fighting  and littering. Why must we have wars and death? I wish everyday could be a happy day. I wish that for one day nobody would fire a gun or do anything to hurt themselves or another person. I want to keep writing forever and ever.” 

“I feel sad lately. One day makes no difference all it is, is the day before today and days pass so quickly sometimes. I feel like I’m not even living. I dream of getting married. I used to dream about going into Junior High School. Soon I’ll go to High School. I still remember Kindergarten. I feel like I’m 100 years old.” 

“Why do some people like to be mean and make fun of the handicapped? The answer is they want to fit in. It makes me sad.” 

“I love someone. I feel it. I wish I knew who! I’m beginning to feel cries on the inside like my stomach is bubbling. I think I like Dennis. I THINK. I know I like Nick. I KNOW. As a matter of fact, I think I love him.”

“I started crying but I don’t know why. Something hurts me but I don’t know what.” 

“I’m full of tears lately. Over the silliest things. If everything could be exactly as you waned then it wouldn’t be life. I wish that everyday we could have something to look forward to. Some people have that. What’s going on? I’m changing…almost like Jekyl and Hyde. I wish I could wake up happy every morning, but I can’t. And that’s life.” 

 

3 years later, I wrote one entry:

“I’ve taken a new outlook on life: Fuck the world. It’s working good.” 

Here’s to getting back to our purer hearts.

Fun and love,

Jackie

Treating Anxiety, Part III: Lyme disease

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“I just have a deep sense, a deep inner-knowing, that I am safe in this world now,” I told my mother one day in early 2013. It was true. For a girl who seriously suffered from panic attacks and PTSD, I had gotten so far in life.  I had worked through my issues very seriously, utilizing everything from medication to meditation, and it was all proving worth it.  Life’s anxiety inducing situations rarely spun me into a panic— deep down I could feel that the Universe was my ally, not my enemy. My risk-taking, fear-facing, and spirit-searching had left me with (what seemed like) an excess of emotional and physical freedom. And I attached to that freedom like it was my identity,  endlessly exploring my options, hopping the fences that said “no entry,”  and following my heart’s desire to go to the parts of the Earth that were untouched. I didn’t want to walk away from this life unscarred, untouched and inexperienced. In an effort to affirm this preconceived notion of myself, I took a camera man and  got my photos taken while rolling around in the dirt as an expression of my free-spirt. This attachment to identity and proving myself…it got me sick. How ironic that, in an attempt to solidify myself into one small box called “free-spirit,”  I got bit by a tick, I contracted Lyme disease from the tick,  and everything I thought I knew about myself violently unraveled.  It was terrifying. That “sense of safety” I had confidently chatted about to my mother months earlier was tested and, as it turns out, fear is a whole different beast when it’s NOT irrational. But it had to be faced and overcome because if I had acted from fear when it came to healing from Lyme disease, I would have died.

A couple of days after my 26th birthday, a mysterious rash began to take up space on my skin. MY skin. Why am I powerless over what happens to my very own protective shell? Why is it my shell, if it’s so vulnerable?  One itchy bump on my thigh, one itchy bump on my elbow, and one itchy bump on my butt later, I realized I might have a little problem. The anxiety set in. I was overly attentive, looking at the newly forming rashes every few minutes, “did it go down, did it go up?” Days passed and the rashes were only expanding. I had one on my calf growing more irritated by the minute and wider by the minute. Like it was alive. I lied  in bed one night on the phone with a free-spirited young man I was loosely dating. I was scantily clad in cotton underwear and a tee- shirt. I was examining the rashes, half invested in our conversation, half obsessed and anxious about my mystery ailment. Slowly, like a hippo’s eyes surfacing on a placid river, a red bump formed on my upper thigh. I watched it come, and I watched it grow. Three more bumps then streaks overtaking the upper part of my thigh—a part of my thigh that was meant to be sexy and welcoming.  And a weighted anxiety began to torture me. “I’ve gotta go,” I quickly hung up the phone, and the googling began.

What in the ever- loving- fuck was happening to my own body? I researched psoriasis, bed bugs, impetigo, poison oak, poison ivy, and spider bites. I was impatient— I tormented myself with questions that I wouldn’t be able to answer unless I was a doctor.  I quit drinking coffee in an effort to magically cure myself. I tried every type of cream and anti-allergy pill. I did everything a young waitress with no insurance could do and nothing worked. I kept naively thinking, “once I work this rash situation out then life can just go back to normal.” I had lived my life that way and with that false idea: get over this obstacle and then I’ll coast. But, in that state,  I was constantly seeking the coast and anxious to get the hurdle over with. When so much of life is an obstacle, well then you’re really just asking to miss a lot of life, right? Part of the reason I HAD such bad anxiety was because I could not tolerate the messiness, the discomfort, of LIFE. Life is messy, hard, and full of detours and if I couldn’t tolerate that… well then life would be …intolerable.

I was desperate to FIGURE IT OUT so after two weeks of no answers,  I took myself to urgent care and was promptly told that I likely had Lyme disease. I was relieved, “cool, I’ll take some antibiotics and then go back to my normal life.” My anxiety dissipated. I was a survivor; I knew how to get my needs met and I knew how to show up for the tough times… Or so I thought.

I was immediately met with a resistance I had never known before. Part of the world seemed to be collectively AGAINST me healing. I felt like I was at war.

I instantly tried to find a doctor. No one would see me on short notice; no one would see me for a manageable price—the beginnings of anxiety, abandonment, and frustration in dealing with the medical community.

I finally saw a doctor, and the cost went directly on an already debited credit card—the beginnings of financial anxiety.

The antibiotics didn’t work—the beginnings of a deep fear that I wouldn’t get well.

My family didn’t show up for me—the beginnings of a loneliness, abandonment and anxiety full of depth. I constantly wondered if I would be cared for.

Lyme disease began affecting me neurologically— Lyme anxiety, a different beast altogether.

Insomnia kicked in and I stopped sleeping for nights on end—My anxiety took me over and I started saying, “it feels like satan is trapped inside of my body.”

I got so sick that working suffered, I had to back out of creative projects, I could barely waitress, and my debt expanded—rational financial panic, rational panic about the potential my future held.

I lost weight, I lost hair, I lost color in my skin—Anxiety about losing my looks, my most used coping mechanism in this life. Also, the “I might actually die” anxiety.

I traveled around the world seeking treatments—I was afraid of needles, afraid the treatments wouldn’t work, afraid I’d disappoint people, never work again, and the list goes on.

I cried all of the time—Anxiety that I would lose my boyfriend to this disease, anxiety that I would end up in the psych ward, that I was actually losing my mind.

I wasn’t sure I’d survive OR, God forbid, what if  I would have to LIVE WITH Lyme disease.

 I would have rather died. In fact, I wanted to die. 

I’m glad I didn’t.

I’m glad that I kept calling the doctors even when they disappointed me.

I’m glad that I put the treatments on a credit card; I’m glad I faced the fear of doing a fundraiser and let my friends and family support alternative treatments.

I’m glad I tried the antibiotics, and I’m glad I was willing to do alternative treatments. I’m glad I faced fears of each new treatments and jumped in with a zest and a need for life.

I’m glad I felt the rage and the heart-break caused by my family’s initial absence, I’m glad I talked about it, I’m glad I took my mother to therapy, and I’m glad I have the option to forgive.

I’m glad I never stopped seeking new solutions to my sleep issues, and I’m glad I found one.

I’m glad I kept my creativity alive by allowing myself to be imperfect. I’m glad I faced the fear of backing out of projects, putting work on hold and resting for a while.

I’m glad I quit waitressing and trusted the universe. The universe provided.

I’m fucking glad that I showed up no matter how I looked or felt. I looked you in the eye when i was pale in the face and 97 lbs and needed a wheelchair, I looked you in the eye and said, “I’m so fucking afraid, but let’s keep going if you don’t mind pushing.”

I’m glad that I stayed in bed when I was afraid I’d miss out on something cool; I’m glad I got out of bed when I was afraid for you to see my face; I’m glad I said “yes” as often as I could and “no” when I knew it would disappoint you.

I’m glad I yelled at doctors and asked for help and risked losing everything— including my own life— in an effort to get well and thrive.

Because now I’m out on the other side and it has all been worth it. And I’m not just saying that because it’s kind of a radical thing to say—I mean it.

Sometimes I think about anxiety: the pumping heart, tingly body, erratic thoughts, paranoid eyes, and I think, “that’s a body that really really wants to live.”

Maybe my anxiety is my desire to live run amuck. Maybe it’s my anxiety that I have to thank for pushing me to fight for life.

I love being alive, I desperately want to live.

Lyme disease, in many ways, birthed my greatest fears into reality. And I faced them head on, sometimes with an army of people behind me and sometimes alone. But I made sure to face each and every one. And I feel like I have a brand new life. I do not have some identity I’ve wrapped myself in, some identity I’m trying to prove. Today, I live more free than I was in the first place: I am deeply in touch with the softness, the fragility and truth, of my humanity (and yours), but also now I  really  know what the fuck I am capable of.

Go show ’em what you’re made of. It’s worth it.

fun and love,

Jackie

Fall Down, Get Up, Repeat.

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Ideally, I would wake up at 7 am everyday and immediately scoop a fresh wad of coconut oil into my mouth for fifteen minutes of oil pulling. After spitting out the freshly swirled toxins, I’d down 16 oz. of fresh celery juice. Then I’d use green tea to get my caffeine buzz on, journal, pray, and meditate. Around 8:30 am, I’d  start responding to emails and writing. I’d make my morning smoothie around 9:30, do more work, eventually get to a yoga class, make a raw salad for lunch, take an hour to rest, hit an infrared sauna or acupuncture, get some joyful activity in like socializing or dancing, and end my night with a healthy ,balanced meal, my necessary supplements, powdered magnesium, and red root tea. I’d then zap with my TENS machine and be in bed with a delicious story by 10 pm to read for thirty minutes before I passed out, benefitting from a solid 8 or 9 hours of perfect rest. IDEALLY. Sounds overwhelming right? So perfect it’s jarring. That’s why it’s an ideal. Because right now I’m sitting in this cafe writing and eating french fries. I woke up at a lagging 9:30 am,  oil pulled for ten semi-bearable minutes, drank coconut water, drank a couple of cups of coffee (instead of the more advantageous tea), responded to emails, made my smoothie by 11:30 am,and got out of the house— not to do yoga but to work. Also, I forgot my supplements at home. Eh, oh well.

I am imperfect. At everything. Including healing from Lyme disease. A shorter way to get the point across is to say, “I am human.” But I have found that statement to be ineffective; we need specific examples in order to actually believe that other people are just as human as we are. Or I do, anyway. I’ve always felt a little paranoid that I was missing some very important piece of information about this whole life thing— especially the whole healing from illness thing. Like other people had the rules—the user manual, the directions—and I didn’t. I would often get advice from other women—people who had previously suffered from Lyme—and I used their advice as an opportunity to beat myself up. Everyone was doing it better than me! “Your” diet was better than mine (or at least you were more disciplined about it), “you” were a better meditator, you saw the “right” doctors, took the “right” herbs, did the “right” research, spent money on the “right” things, you drank better water, had a better air purifier, did the “right” energy work, etc.  I thought I was bad at being sick (and “you were good at it??)  I cried every single day even though I knew it was harmful to my central nervous system. I cried every single day. And I thought maybe if I could just stop crying, I’d be doing it right.  I looked at people who seemed to hold it together—was that the right way, I wondered? I looked at people who worked serious jobs—was it a more serious job I needed? I looked at people who took two years off of work—did I need to take off? It was an endless mind-fuck. And now people are looking at me through sick eyes and wondering some of the same things: what does she do that I am not doing? She’s better at it than I am. I can’t be as disciplined as her. What’s her diet? Her protocol? on and on.. I’ve heard  you say these things and I’m here to tell you all about how I fuck up.

It’s important for me to write this as a wellness advocate— as a person who preaches a certain diet and lifestyle—to let you know, that I fall short a lot of the time. We cannot all be Kris Carr or Louise Hay. I hold myself to pretty high standards as you saw in my “ideal day.” Some practices have just become habit for me—no questions asked. And other practices—the ones that have less severe consequences— I have to work hard at. And some things, I’m just waiting on the willingness to carry out (like quitting coffee). The most important thing is that when I do fall off of the horse, I get back on. And that I get back on quickly. One of my dear friends once told me, “there’s only one rule. The rule is that you never, under any circumstance, beat yourself up.” That’s the rule I carry with me. It makes it much easier to get back up if I’m not whipping myself into a state of unrelenting weakness, forcing myself to stay down.

Two weeks ago, I was in Hawaii—my first vacation in three years. I took the vacation thing to heart. I ate all wrong, consuming more dairy and gluten than I’ve had in at least a year. I over did it physically, doing long hikes without shoes/water, and I didn’t get enough sleep. Oops. A few days after getting back to LA and trying to get back into my healthy groove, it was my birthday. Again, I bailed on my raw afternoon salad, I ate sweets that night, and instead of prayer and meditation, I spent the whole morning crying. Then it was Thanksgiving and, again, I “cheated” on my diet eating some extra desserts because… it’s the holidays!

It’s true. It’s a very hard time of year to eat a mostly-vegan, gluten-free diet. So, I fucked up a little. Every single day, I fuck up a little. Either I eat something a little off of the perfection I’m going for, I drink too much coffee, I forget to exercise or I don’t rest enough. It is challenging to fit it all into one day and have a job and live with any bit of flexibility. So, I don’t. But I do always wake up with the intention to try. I am always willing to get back on the horse when I fall off. My inner dialogue after whatever poor choice I made is something like this, Ok, that didn’t feel great. What’s next? Should I maybe consider doing it differently next time? Should I drink some detox tea or hit a yoga class? Or do something else that makes me feel good now? It’s OK. It happens.  If I don’t beat myself up then I have the space to compose a solution. So, let’s be real: you’re probably going to slip up this holiday season and abandon some of your custom self-care practices. What do you do then? Keep going, be kind to yourself, allow humanness and try again. And please know that all of us—all of us—are fucking up, too.

With fun and love,

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

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