The Symptoms, Part II: Physical

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The symptoms! Everybody wants to talk about the symptoms. I view healing as a rhombicosidodecahedron— a shape with 120 edges. There seem to be endless tools/ sides and alley ways— all need to be used.”Symptom-bonding” is one very small (albeit necessary) part , but if we get stuck there too long then we miss the 119 other aspects of healing.  At some point, when I started taking note of the things that zapped my energy vs. the things that gave me energy, I noticed that talking/obsessively thinking about my symptoms was actually a ZAPPER. Trying to “figure it out” made me more sick and more confused. Every little sensation I experienced sent me on a panicked google spree, zapping my energy and ruining my day. Once I learned the hard way, I took a different approach: Instead of googling (and almost never finding anything helpful) I would take a nap, eat some celery, meditate, go to an infrared sauna, laughed out loud at something, or do any number of things that actually took me one step closer to wellness.  I stopped talking about my symptoms for the most part, and got busy doing things that brought me joy and wellness,  but that doesn’t mean that symptom talk  is not a crucial part of the road to wellness. At first, I needed to feel heard, understood, and validated— especially with an illness as elusive as Lyme disease.

I, like many people with Lyme, initially got stuck in symptom research -mania. Of course I did. I was trying desperately to figure out what was happening to me, to gain some sort of control over my body, and I was questioning whether or not I even HAD Lyme disease thanks to the doctors around the world that claim Lyme is not real. I have had doctors look at my POSITIVE Lyme blood tests, hear my symptoms and say, “it’s not real,” or, “I don’t like Igenex so I don’t count them,” or, “Lyme is treated with antibiotics. If you took antibiotics then you have post Lyme disease which isn’t really Lyme disease.” And to all of those MD’s I have said, “So then what do you propose I have?” Only to see raised eyebrows, shrugged shoulders, and a confused response of, “well I don’t know. You’re an interesting case.”  COOL. It’s no wonder I  questioned myself and my symptoms.  It’s only natural to become hyper focused on your “condition” when the world at large seems to resist it. You start googling, looking for validation, looking for a solution and asking any fellow Lyme sufferer—”Did you have joint pain, heart palpitations, trouble breathing, trouble walking, seizures, etc.” Becoming  a symptom- fanatic happens in an effort to save our own lives.

At Wellness Companions we work with newly sick people all of the time that want to dive right into symptom-bonding. We get it: the gratification of someone else understanding what you feel, validating what you feel, confirming that you’re not crazy, AND giving you hope that it can/does/will get better is indispensable—especially  in the beginning stages of illness. And, yes, it’s extra important when most people in your life probably couldn’t begin to understand what you’re feeling. I got more and more angry the more I tried to describe what I was feeling to others. They didn’t get it, they’ll never get it—how could I expect them to? But I get it and I’m here to tell you: You HAVE the symptoms, you’re not making them up, they are likely Lyme disease symptoms, you can trust yourself, and I suggest you take your power back and get busy doing things and talking about things that actually make you feel better! Trust me, it works.

I’ve decided to list off and describe my main symptoms, list some solutions I found for them, and leave it here for anyone who might need just a little reassurance that what they’re feeling is entirely “normal.”  But I have one request: I urge anyone who is chronically ill to shift attention from the symptoms to radical self-care as often as possible. Because I want to see you thrive. And I want to hear your stories about getting well. I am not suffering from many of the below symptoms anymore, but the more well I got, the more I realized I wasn’t making any of it up and the more respect I had for what I went through and how the bacteria ravaged my body. I’d love for this post to be a space where folks can share their symptoms and solutions—feel free to comment below. In the often isolating word of illness, it’s so important to not feel alone.

That “flu” feeling: You know the malaise, the aches, and the sore throat that hit the day before you get the flu? Yeah, I lived with that on and off for a couple of years. I had it early on in my illness, and I kept convincing myself that it was just a very weird cold. I wish I had stopped treating it like a cold and started treating it like Lyme disease. Solutions: REST, Neti pot, infrared sauna.

Extreme fatigue and weakness: Lyme made me hella tired. More tired than I had ever been—more tired than I thought was humanly possible. There were days when I couldn’t hold my head up. There were days where the stairs were too hard. I was too weak. Extraordinarily weak.Driving was scary and I had to pull over more than once to take breaks. Getting dressed was a chore, and I sat down in the shower. My eyes burned, my face hurt. My voice was weak. Cooking for myself was difficult. I was too weak to hold a baby, to carry a grocery bag, or to …smile. Everyday tasks became unreasonably difficult. It’s  a very “normal” reaction to Lyme and, yes, I thought I was making it up. Please save yourself from that torture— you’re not making it up. What helped: RESTING, acceptance, prayer, meditation, ozone therapy, IVIG, herbal supplements, BIE, acupuncture, infrared saunas. quality diet. 

Insomnia: The Devil’s work. I’d stay awake for 50 hours straight, and when I did sleep, it was rare to get more than 3 hours in a row— I tossed and turned, wept in pain, thrashed out of frustration, and then got up and tried to survive another day.  I tried everything: Exercise, no caffeine, massage, meditation, every natural supplement you could imagine, baths, candles, movies, reading, whale fucking music and the list goes on. I tried Trazadone which made me suicidal and Kolonipin which had equally damaging effects.I really am so sorry if you’re suffering through this. It got better for me, and I believe it will get better for you too.  What ended up working: Ambien worked OK, Valium was better, and a natural supplement called Tranquil Sleep from Natural Factors, inner-child work, breath work. 

Joint pain: It sucks to have arthritic pain. I spent many nights icing my knees and heating my hips. My joint pain moved through my body—it could be there one second and gone the next. It was stabbing and awful. Sometimes, my wrists got it, my fingers, my toes and ankles, but my knees took the hardest hit. I’m sending love to your sweet joints!  What helped: curcumin supplements, poke root oil, epsom salt baths, moderate exercise, anti inflammatory diet, TENS machine, acupuncture, ice packs, heating pad.

Myalgia pain/ muscle soreness/ foot soreness: Yes, I was one of the lucky ones who got that all-over pain they talk about. So brutal. My back was indescribably tight at all times— no amount of massage or acupuncture or rolling around on a tennis ball relieved the pain for any significant amount of time. The pain kept me up at night. And my legs felt like I had just done a 30 mile hike every single day. Some things made pain worse especially when herxing. The Cowden Protocol made the muscle pain so much worse that I eventually had to stop it because standing up became way too painful. Stretching and exercise made me hurt more—especially yoga. What helped: anti-inflammatory diet, curcumin, magnesium, infrared, IVIG, Ozone, ice packs, heating pads.

Muscle twitching: Nothing feels like powerlessness more to me than when my muscles twitch uncontrollably.  I had it all over my body— my face to my toes. It especially sucks on the face—the eyes. I don’t experience this much anymore. I’ve realized that exercise can set it off.  My best solution: Magnesium and/or magnesium with calcium. 

Brain fog: This is a sad one. I found myself constantly word-searching, forgetting names for the first time in my life, and walking around in a complete daze. One day, I couldn’t remember how to write out a check. It’s very painful and felt quite literally like I was losing myself, my ability to think. There was a time in my life that I felt very on-point. The brain fog of Lyme made me feel like I was constantly missing the point, the bullseye, just a little OFF and dreamy and tired. It was deeply depressing. What helped: essential oils especially frankincense, Omega 3 and 6, sleep, forgiving myself and trusting it would get better, rest, moderate exercise, meditation. 

Heart palpitations: I’ve actually had these for a long time. They got worst with Lyme and scared the shit out of me many nights.  What helped: CoQ10, breathing, staying calm.

Breast pain: I was in terrible breast pain every single day for about one year. It hurt to hug, it hurt to lie on my stomach, it all hurt. I’m not sure how this plays into Lyme but for me it came with the illness. Good news: I NEVER experience this one anymore not even much when I’m PMSing. How I fixed it? under wire free bras. That’s it. Or no bras. Let the babies breathe. 

Anxiety/ Depression: Read last weeks post for my in-depth experiecne with Lyme depression. My anxiety was just as bad. I will comment on that in the future. Try meditation, supplements like ashwagandha, acupuncture, massage,  clean eating,  a creative project, gratitude lists, and therapy. If you need extra support from anti-depressants, don’t be ashamed to ask. 

Thyroid/hormone dysfunction: Yep, my hair started thinning—quite a lot. I lost weight. I lost my appetite, my periods got much more painful. I lost temperature control in my body, and my circulation was shit.  It was very scary. I took naturthroid for a while, but I didn’t love it. A friend introduced me to a supplement called Xenostat that helped me a lot! After I started taking it, my hair started growing again.  Also, the progesterone-only “mini pill” or “pop pill” helped my periods and balanced my hormones. 

Dry heaving/ nausea: I have done far too much dry heaving over the last couple of years. I have felt extremely nauseous more times than I can count. Super hot. What helped: homemade ginger tea. Add lemon and cayenne for  an extra healthy kick. Aloe Juice saves the day—drink it 30 minutes before a meal. Also, try waiting 30 minutes before a meal and one hour after a meal before drinking any fluids. That’s a gem.

Other sensations came and went like intense ear pain (I constantly felt like I had a super painful ear infection.), swollen glands, shortness of breath, and numbness and tingling. Other common symptoms that I’ve discovered from talking to people with Lyme are air hunger, night sweats, dizziness, gastrointestinal dysfunction, bladder pain, seizures, fainting, fever, bells palsy,  and headaches—all very common.

Crazy, huh? It’s hard to even remember all of the symptoms because there are so many. But they’re all SO real.  How could one disease present with SO many seemingly unrelated symptoms? I don’t know. I don’t question it. I don’t bother. It’s a waste of my time and my time is needed for healing. I just know that the symptoms are 1.) real 2.) treatable and 3.) reversible.  I urge you to refer to this list any time you feel alone and misunderstood. I urge you to take note of your pain, welcome it, and then get busy focusing on how to care for yourself. We are so powerless over so much of what happens inside of our body. The best way to heal is to take power where you can get it: self-care, treating the symptoms, focusing on the things that bring you joy. focusing on something like taking a photo, taking a bath, or meditating gave me energy and made me feel powerful!

Feel free to comment here to the symptoms you relate to or to add to the list so that someone else can feel heard. Let’s start the solution revolution.

With fun and love,

Jackie

 

 

 

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

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