Growing out of the Ashes

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We left early in the morning for Sequoia National Park last Tuesday.  I woke up excited for an adventure—a new place, lots of rocks, big trees, and people I love to share life with. I showered, put on in-the-car clothes, double-checked my suitcase for hiking boots, warm socks, an iPhone charger, and sunscreen. We had booked the trip a couple of months prior—my uncle and I debated dates and national parks on the Facebook messenger app ( I’ve found it secretly amusing for years that Facebook is our primary form of communication). When he initially asked if I would be able to join him and my Aunt in Sequoia, an intoxicating joy shot through me— an appreciation for a healthy life that I can’t imagine will ever find its way to evaporation.

“I CAN. ”

After a couple of years of  “I cannot,” “No,” “sorry I have to cancel. I’m too sick,” few words feel more exhilarating to say than, “hell yes, I can. Count me in.” I can walk. I can plan ahead. I can manage the altitude. I can hike. I can do long car rides. I can sleep in a hotel. I can eat some “bad” foods. I can wake up early. I can push it. I can join. I am able.

And how grateful I am that I could be inside of such a marvel of a national park—a park where the largest tree on planet Earth stands both humble and impressive as fuck. I had a feeling a blog post would come out of the trip—I assumed I would end up shamelessly celebrating my ability to climb on top of big rocks in my “fashionably sensitive but too cool to care” hiking attire.

Exhibit A and B:

 

I couldn’t help myself.

But, truth be told, that’s not at all what this post is about. This post, as it turns out, was birthed as I walked through a touristy museum in the park appropriately named, “Giant Forest Museum.” A museum that I was— admittedly— dreading going to. I was hoping for a quick stop to satisfy my Aunt and Uncle. Anyone who knows me knows that I don’t care too much for foliage. I mean it looks nice and I love Mother Nature and the abundant gifts she offers that I too often take for granted. I love to pause and appreciate the majesty of it all, but that is different from walking through a fucking museum where I could just as well open up an “S” encyclopedia and sit in a corner and read about the Sequoia for an hour. The name, where the name is derived, where it grows, why it’s so special BLAH BLAH BLAH. Is there something for me to climb on? I’m missing the world outside. The sun is shinging and we are in here…looking at dioramas of trees.  I know, it’s a shameful, embarrassing admission for a crunchy liberal, but in keeping with my value of balls-out-honesty, there it is. You will NEVER catch me on a park ranger tour unless I’m promised to see adrenaline-inducing wildlife (this is why I have adrenal fatigue).

Whether it’s due to age or illness or ten years of attempting a solid meditation practice I don’t know, but I am changing. I felt similar at Disney World two years ago when I discovered that Epcot was awesome. Only a boring, sleepy,  non-child thinks Epcot is awesome. And only an adult laced with trauma would determine that “The Giant Forest Museum,” and the Sequoia species are wilder and more exciting and more exhilarating than any rock climbing, jumping out of plane, running down a hill so fast your legs might fall off experience.

Sequoias are magic. Yes, there’s the obvious things like their size and girth. Like the fact that the sequoia named “General Sherman” is the largest living thing on planet Earth today at 275 feet tall and a circumference of 102.6 feet at the base. Looking at the General Sherman is stupefying— standing near it made me feel both like a piece of sand, tiny and insignificant and like a divine entity just as much of a marvel as every other living thing. And while that should probably be enough to produce wild appreciation, respect and honor, it wasn’t what held my attention. What got me were the substantial wounds Sequoias have to endure and heal in order to thrive to such rich heights, reaching their full potential.

A Sequoia needs fire to grow. Flames burn down surrounding trees that are taking sunlight and water that the Sequoia desperately needs—cruel like we know life can be. The fire blazes and burns up the Sequoia, scorching the lower branches consequently  sending down pods full of seeds. The fire clears the brush of leaves and dried up pines atop the dirt, leaving a rich ash soil for Sequoia seeds to grow in. It’s this ash that makes the most hospitable womb for these sacred seeds. (Familiarly, the mother is scarred).

sequoia tree scars

Any mature Sequoia has visible burns on its bark. However, the trees are terrifically built to withstand fire. The bark of the Sequoia is made to be spongy, soft, and fire resistant. There is a protective layer just beneath the outer bark that heals fire wounds. Some trees have been able to live through upwards of 80 fires, healing the wounds every time, becoming all the more magical because of what they survive with such dignity and triumph (ahem: without. even. trying.)  The trees know they already have all they need.

Do you see where I’m going with this my wounded and healing friends?

I thought about my grandfather. He was the sole survivor of a deadly amusement park fire on August 13th, 1944. His scars made him all the more a hero in my eyes. The fire opened his heart the way I imagine seeds fall open from the trees.

More insignificantly, I thought about The Planet of the Apes.. when one ape says to another, “Don’t worry, blue eyes, scars make you strong.” I saw that movie when I was newly sick and held onto that quote. Because I have blue eyes. And because I have scars. And because I have everything I need to heal and transform the wounds. And, I guess because I find a way to make most things about me (like what I just did with the Sequoia).

I thought about #neverthelessshepersisted … because I love an opportunity to think about that. And because it’s powerful as fuck to persist in the face of obstacles.

I thought about illness, grief, heartbreak, joy, death, abuse, injury, and celebration and I thought about the endless ability we have to heal. I thought about how if you opened us up and put us on display (like scientists and medical professionals often do) and/or went to the museum on the South Street Seaport called “Bodies: The Exhibition” then you know that we are equally as magical and awe-inspiring as these magical trees. That we too survive fires— whether literally or figuratively. And all/many/some of us heal and thrive… and, in fact, if you’re like me (and the Sequoia species) then you need the fire to grow to your greatest potential.

Here is the most mature result of what rises up from the ashes:

mature sequoia tree

 

With fun and love and THRIVING BIG,

Jackie

 

 

 

 

 

 

The Curse of Knowing how Healthy Feels

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I was observing my surroundings. How did I get here? I was lying on a flat table with one needle in my right arm and one in my left—the one in my right drawing dark, heavy, apathetic blood  from my sick body so it could pool in a machine where it got an expensive make-over,  the one in my left  feeding me an upgraded, strawberry-like vibrant blood. My dear friend sat next to me with a book she was reading aloud to keep me calm. Two innocent-faced,  pretty nurses that didn’t speak much English were nearby watching multiple patients. We were in Bali, Indonesia. My eyes grew fainter, my body more restless as though something inside of it was dying and fighting for life. The needles hurt, the treatment exhausted me,  I was afraid. Across from me was another woman receiving the same treatment but with no friend sitting at her bedside. How do you do this alone?  We struck up a conversation because it was weird to be receiving such an intimate treatment in the same room and not say a few words like, “hello. funny to see you here.” or something. As it turned out, we were both in the grips of Lyme disease.

A lot of people with Lyme disease—especially Australians— go to Bali for this one doctor and this one treatment. Penny was in her forties—she had an incredibly sweet demeanor, long nails, tan skin, a great body, she wore modest shorts, a tank and flip-flops. Her hair sat in an effortless pony tail, her face was untouched by makeup.  I had so many questions, “when, how, what have you tried, what are your symptoms, do you work?” I was constantly comparing myself to others with Lyme, I was on a mission to find out whether or not I was making it up, whether or not it seemed likely that I would recover—or maybe I was on a mission to feel less alone. Most of what she said was all too familiar to me. Her words confirmed that Lyme was real.  She knew how tired I was when I said I was tired; I knew how much she needed to rest even though she didn’t want to. Together, we understood the loneliness. So few actually understand what I felt, what I was going through. It felt like a hit of validation any time someone else talked about the symptoms I had been complaining about: We can’t all be making up the same symptoms. We aren’t in fucking cahoots. But there was one big difference. I was newly sick —just a year and a half in— and she had been sick since she could remember.

I remember Penny sympathetically saying to me, “I think it’s harder for you. Because you know what feeling good feels like. You know? I never really knew that. I don’t really know what it is to do a cart-wheel on the beach without pain. It’s been this way since my early teens. But you know what that feels like. And it got taken away. And, I can’t imagine how hard that must be.”

“………..Really?” I asked, dumbfounded.

“Yes. don’t you think?” she said.

I didn’t. I definitely didn’t think. I thought she was way off.  My god, I was so glad I hadn’t been sick my whole life and, to be fair, I still am glad about that. But now… now I get precisely what she was talking about.

Recently, it torments me—the memories of effortless late nights and early mornings, the fearless dive into sugary desserts, the hikes without pain, the ability to hustle and spend my money on things that weren’t about my health, the ability to push through, the tight body, the very rosy cheeks, the falling asleep without the assistance of melatonin, 5-HTP and sun-theanine, the drinking coffee first thing in the morning instead of celery juice and water and tea, the plan-making, and jam-packed schedule, the giant smile I’d have as I ran uphill, downhill, and through the hills, the dancing, oh the late- night- anytime dance parties, the bountiful, delicious hope that lived inside of me for my bright future, and the innocence—the not knowing the dark underbelly of life.

My positivity reserves are all used up, they are tattered and unrecognizable now.

And here’s the confusing thing: I’m so much better now! Today, I CAN make plans, I can hike, I can be spontaneous again, and I can work again. Most of my days, I feel very alive. But it’s not without work. It takes a very careful house of cards to keep me stable and that takes up a lot of my precious time. Time that I would much prefer not making doctor phone calls, or peeing into a cup or getting blood drawn or screaming while I receive an infusion on my couch. There was a time when feeling like I feel now would actually be the predecessor to getting a cold. A time where I would lay low and wait to get back on my feet. But this is the new “on my feet.” So, when I sit at home writing a post or memorizing lines or sending emails, sometimes I remember when it was all so much different—a different body and a different mind. A mind before illness. A mind free from years of discouragement, rejection, and crazy depression.  A heart free of the trauma that three years of illness comes with. A free and happy and hopeful body—before I knew that my body could abandon me.  I would be lying if I said I didn’t miss it. I would be lying if I said that sometimes I wish this didn’t happen, sometimes I wish nothing changed, sometimes I wish I didn’t need this lesson in order to grow to my fullest potential. But I did.

I’ve posted a lot about my triumphs and how much I’ve grown as a human and about how I wouldn’t have it any other way. Blah blah blah. It’s not untrue. I DO feel that way. And I also feel betrayed and ripped off and really really bummed that the second half of my twenties were spent….suffering. I imagined those years would be full of very sexy successes. But, in so many ways, they are my most fucked.

From what I’ve learned, my current experience is extremely common. Since I’m safe now and not desperately trying to survive, I’m more aware of how difficult it’s been—what a beating I took. I’m less focused on needing to lie down and be spoon-fed so I get some nutrients and more focused on the fact that I used to be able to wake up without joint pain. I see clearly all I’ve lost and I’m not entirely clear on everything I’ve gained. Not yet. I’m trying to welcome my new self to the table and get to know her and respect her. And I also try to use my old memories to my advantage when they come stampeding in. I use them as fuel to keep striving for health, for a pain-free body, as fuel to persevere. It will always be different than it once was because I am different. I am forever altered. For better and  worse. I can find that little seed of hope that’s left over and nourish the fuck out of it—start sewing up the tattered positivity reserves. I can just keep going. If there’s one thing I’m good at it’s keeping on no matter the circumstances.

Just keep swimming.

Fun and love,

Jackie xx

Bill Nye Saves the World?

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That is a mighty declaration Bill Nye makes in his new Netflix show’s title, isn’t it? Especially since his “entertaining” op-ed-esque message in episode two on alternative medicine is mostly destructive. Normally, I wouldn’t be interested in watching anyone try to debunk alternative medical treatments because it is just a way for me to get unproductively angry, further taxing my adrenal glands. But on a particularly boring Saturday night, I got a text from a friend, “Bill Nye has a new show on Netflix, episode 2 is on alternative medicine. Check it out—some good stuff.” We can call this friend (who I love dearly) a world-class instigator. I was already mad because considering his kitschy name—”the science guy”—I assumed it would be very anti-anything-that-isn’t -Western medicine. But masochism and feistiness won: I watched. The episode far exceeded my expectations: I was left more angry than I imagined was possible by a short 30-minute segment. I wasn’t feeling personally offended that Mr. Nye disagrees with anything slightly to the left, I was angry at the much larger effect is has on the mysteriously sick population to use your platform to sell ideas that could potentially be harmful. In an effort to turn the unproductive anger into something productive, I would like to do a little debunking myself.

The episode proves nothing. Oh, I’m sorry, it proves one thing: There is a very expensive item at Whole Foods that claims to cure heartburn. But—surprise— it doesn’t. Of course, this does us no good because he never divulges the name of the product. But we all know to be suspicious at Whole Foods, right? RIGHT? Instead of using facts and stats and, well, science, he spends his time mocking a world that he clearly knows nothing about—a world that has many advantageous options, a world that helps people—if not, saves people—from pain, heartbreak and illness. Being biased when it comes to medicine can literally take someone’s life.  So, if you happened to catch Bill Nye shamelessly (and ineffectively if you really paid attention) try to debunk any treatment plan that is not FDA approved or available at the pharmacy then I want to offer a deeper, more comprehensive and truer reality.

To be clear, I’m not interested in any radical opinions about medicine whether they are Western or Eastern.  I think the modalities compliment each other nicely—I have healed using both, and I still use both on a daily basis. Where Eastern falls short, I go Western and vice versa. I strongly believe that people should be well-informed, well-researched and do what works for them— that treatment is individual and personal. I think people should never feel bullied into or out of whatever way they deem best to care for themselves.  The only generalized belief I have about healing from something as destructive, cunning, and chronic as Lyme is that it requires a three-fold approach: spiritual, emotional and physical. All three must be met equally to have full success.  Point being, I am not biased. I am, HOWEVER, a person who got sick with something that is a hell of a lot less straightforward than say, a sinus infection—something that is notoriously well-treated with antibiotics. A serious illness and a lack of funds forced me to open up to a world of possibilities when it came to medicine, and I guarantee you, Bill Nye has had no such experience nor did any of the guests on his show.

Considering the wide array of medicines and treatments that are not recognized as Western medicine, I thought it was quite ambitious to debunk ALL of them in just 30 minutes. Of course, he doesn’t at all do what the title of the episode suggests— instead he focuses on magnetic knee bands, sound therapy, and a mysterious $50.00 potion from Whole Foods. Oh, I’m sorry, he also gives us about one minute on homeopathy. He never touches on acupuncture, herbs, infrared saunas, massage, Reiki, supplements, ozone therapy, vitamin drips, exercise, meditation, or FOOD.

He spends the first many minutes of the episode explaining how medicine becomes medicine: Research. Research includes 2 groups, a group given the new drug and a group given a placebo, the results are looked at and effectiveness is determined. I thought this show wasn’t for children? Nye breaks down this process as simply as possible and then for the rest of the episode forgets to ever mention whether or not the alternative medicines he preys on were tested that way. Of course, most aren’t because they can’t get funding to do research—he says himself that alt medicines aren’t researched so consequentially he has no stats or facts.  Alt treatments aren’t given the same kind of money and don’t have backing from big-pharma.  Not to mention that medicine NEVER starts as medicine. If antibiotics are made from mold and fungi then there was a time when they weren’t considered medicine either, right? They had to undergo the process he describes and weren’t discovered until 1928 and chemo wasn’t used in cancer patients until some years later. Remember just some months ago when weed wasn’t medicine? Cancer patients use it now.

But, to be fair,  there are some things we agree on. He suggests people tune their “quack-o-meter.” I would suggest the same. Except that I know lots of “quacks” that have their MD and are prescribing— oh I don’t know—painkillers, psych drugs and antibiotics by the dangerous handful.

His handy check list to help us tune our quack-o-meter involves things like:

“does it claim to be better because it’s natural” 

Mine involves things like:

“Is the doctor taking your symptoms seriously or are they sending you away with some steroids and no blood work.” 

“are you biased” (ahem ahem)

Like him, I believe in research. People should be protecting themselves and doing research on whatever treatment plan they’re after. I think one of the best places to start is by asking people you respect who have recovered from what you have, what they did to get well. And then following it up with a couple of practitioner opinions and your own detective work in books and on the handy computer. He doesn’t approach research the same way—I guess it wouldn’t be entertaining or laugh out loud enough?

Instead, in an effort to debunk sound therapy, he sent an  “in-the-field researcher” to see a sound therapist in Haight Ashbury San Francisco—a notorious hippie-zone. I’ve got to hand it to them, they found one of the kookiest, craziest kinds of healers out there.  They found a man who claims sound therapy can heal cancer, shrink tumors, and get people off their Parkinsons’ meds.  They got the guy on tape screaming at organs. Yikes. It’s shocking. And horrible and can be dangerous to make such extreme claims—claims like “I can cure cancer, ” OR claims like,  “Bill Nye Saves the World.” Seems like the two of them are cut from the same cloth, doesn’t it?  The unfortunate truth is that I have equally terrifying scenes I can recount that take place in a Neurologist’s office. It was also dangerous, shocking and horrible to find out that my neurologist over-prescribed a medicine that could have killed me and failed to notice for five months. It was also horrible when my first doctor for Lyme kept prescribing me handfuls of antibiotics without ever so much as checking my CBC.  It was also shocking when that male OB GYN looked me in the eyes and told me I had a tiny vagina and a beautiful uterus. OMG.  My experience with sound therapy was much more pleasant than those very Western experiences.

As far as sound therapy, I had great experiences —albeit, I visited two in-demand centers that know precisely what they’re doing with those big Himalayan crystal bowls. And I’m here to tell you, it’s a fucking incredible meditation. Relaxation is a key component to combatting illness. The less stress in the body, the less acidic your body is and the easier it is for your immune system to function and fight disease. Your organs and glands aren’t working extra hard to monitor stress reactions. This is researched and proven. SO, wouldn’t something like deep meditative states encouraged by relaxing environments be useful to sick people? It is also proven that  sound therapy specifically is beneficial for stress-induced illness. Why did Bill fail to mention that? Maybe because he hasn’t had a real run-in with illness? Maybe because he has access to good doctors and vacations to the Caribbean whenever he wants them?

Let’s be clear: Just like there are very bad/ dangerous MD’s out there—quacks, if you will—there are also poorly trained and, yes, dangerous healers out there. I should know, I’ve had good and bad experiences with both sets of people. Again, staying well-informed and being your own advocate is key. It is discreditable to discuss the dangers of sound therapy without also discussing how many people are dying because of over-prescribed painkillers. And there are statistics for that.

Bill Nye brings on one guest who veers to the left in his expert panel. He  had legitimate things to say about crystals, sound therapy and complimentary medicine and he was talked over, and mocked by Bill multiple times. It’s a shame because he had solid arguments and it seemed like Mr. Nye was all too overwhelmed to actually address anything he was saying. The “expert panel” was cut short so that a three minute   “comedic stand-up” act could take the stage. Really? I thought this was about science and medicine? The comic makes fun of Deppak Chopra, white people over-buying Buddhist statues and white people ruining what was Yoga. I don’t disagree— what was an amazing spiritual and physical practice is now a hip trend, a fashion industry.  But there’s a lot of incredible yoga teachers and studios. There’s a lot of people living up to the traditional practice. And, more importantly, it helps sick people. It helps people with pain levels, it helps with lymph drainage, it helps with stress levels, and it helps people who are rehabilitating and building their strength back.

I know people who have healed from various illnesses using solely Western medicine or solely Eastern medicine or a combo of the two. And I know people who have died. It can’t all be summed up with science OR the law of attraction.If 34 billion dollars a year are spent on supplements and vitamins and alt medicine then why in the fuck aren’t we looking at what lies beyond that number: people aren’t feeling well and doctors aren’t always helping. Bill tells us to save our money, but we are simply trying to save our lives. I think the much bigger question here, a question that deserves attention and research is:  Why are people feeling so bad and why isn’t the medical industry fixing it?

On Mucus, Urine, and Peace

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Mucus:

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

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

Ian took off of work and came with me to the appointment. He was  immediately kicked out of the consultation room due to HIPAA laws. It was all a new experience. No one has ever been kicked out of a consultation with me before, and I have had many friends come to appointments with me. Ian was sent away because he is not my “husband.” Of course, I immediately perked up, wondering, “Hmmm will this make him propose?” I can’t help it. But the doctor pulled me out of that fantasy with all of the scary annoying information that I’m constantly being dealt.

ME: “Can we wait for Ian so that he can absorb all of this information you’re giving me? That’s why he’s with me.”

Doctor: “How much schooling do you have? Are you educated?”

Me: “excuse me?”

Doctor: “Did you go to school? Can you absorb information?”

Me: “I went to school. Some college. And longer training in my field.”

Doctor: “Ok so you don’t need Ian to absorb this information. You’re smart enough.”

What a dick.

He had on one of the most blatant toupees I’ve ever seen. I wanted to rip it off his head and do mean things with it.  Him and his stupid toupee.

Oh, Medi-cal.

Ian signed some paperwork and made it back in time just to hear one last thing. The old toupee’d doctor shook Ian’s hand and said, “Just make sure she doesn’t get sick. Because if she gets sick, what we are worried about is that her immune system can’t fight infection so she could get pneumonia and die. You two have a good day.

You’d think that they would have rushed to get my IVIG figured out considering the threat of death they kicked us out the door with but no: They still haven’t even submitted my file to the infusion company. COOL.

So, while I’m slightly rejoicing over the magical feeling of ‘normal’ illness, I have a little voice—no a giant voice—shouting “don’t get sick. Too late. DEATH awaits.”

Also on a much less dark/devastating note, I am bored as fuck. I am bored, slightly depressed, and lonely and wondering how in the ever-loving fuck I did this for two years!? I stayed in bed, at home, walking from the kitchen to bed to the bathroom for two years. It’s been 24 hours and I feel like a lunatic.

I’m amazed by what we can tolerate as humans when we have no other choice.

Urine:

February 13th was my first day off in a while. It wasn’t even a day off. It was just the morning and afternoon that I had off. Another miracle! I used to have everyday at home and now it’s so sparse that I sometimes crave days to stay at home. In fact, the truth is that on February 13th, I had to cancel plans to stay home so I could pee into a bottle for six hours in “Peece.”

Let me explain: I have this new amazing doctor in New York (that my mother generously paid for) and he suggested/ordered a heavy metal pee test. That’s not what he called it. He used more pro lingo like “urine sample.” I was grateful for the test. It’s the first time in my illness that I feel ready to deal with whether or not I have heavy metal toxicity. Yes, I got my amalgams removed, and took ALA, and ate lots of cilantro, and took loads of charcoal and detoxed like a mofo so it’s not like I wasn’t already taking some actions, but, all of this time, I didn’t have the emotional or physical capacity to find out IF I was actually toxic—I was in NO position to chelate so it didn’t seem constructive to find out IF I was toxic. But now I’m ready.

I received the kit. It was  a cardboard box equipped with a giant plastic bottle, a plastic cup for you to pee in and then transfer to the bottle, and then a small test-tube  vial to eventually send off. You also have to keep your cherished pee in the fridge all day as you add more and more. YUM. I have a slight— or maybe major— obsession with my pee. It’s like a competition I have with myself everyday: How clear can I urinate today? How hydrated am I? Am I acidic or alkaline? It may seem ridiculous but these are the things that get me through. I was uncannily excited about seeing what a giant jug of a day’s pee would look like,  and, I’m here to tell you, it looked FAB. A slight yellow tint but otherwise just hydrated perfection.

I NEEDED to show Ian and my roommate. I needed to brag about my ph levels and my pretty piss. Ian got grossed out and I got mad at him. We often fight about things like this. I think it’s OK to pee in the shower; he thinks it’s disgusting. I think it would be fun to cross streams in the shower; he thinks it’s disgusting. I think it’s hilarious to pee on or near each other when we’re in the ocean; he, again, thinks it’s disgusting. OK, fine. We agree to disagree.

But it only seemed fitting that for Valentine’s day, I would need his help dealing with my urine specimen. I wasn’t going to be home to hand over my specimen to the FedEx guy so he needed to do it. What a man: he rushed home from work and the handoff was successful. That was, for sure, the sweetest thing he did for me on Valentine’s day: passed my beautiful urine to a total stranger.

Happiness

On the topic of romance, last week Ian and I had a terrifyingly vulnerable “chat”—maybe it’s classified as a fight?  But we don’t really fight. He talks, I talk, I cry, we hug, we have sex. We weren’t exactly disagreeing or raising voices—is that what classifies a fight? I don’t know. I grew up with very real fighting so maybe I’m nt the best to ask.

Regardless, near the end of this “talk,” I was scrunched up, sweating, and nauseous and he was standing against a door frame. He said, “I guess all I really want is for you to be happy. I just want you to be happy. Sick or not.”

QUIET. TEARS. SWEAT.

He thinks I’m unhappy? Am I unhappy? After we made up and moved on, I had to do some investigating. No one has ever looked through me like that and accused me of being an “unhappy” person. I’m smiley, and sparkly, and joyful and also…moody. That night, I thought (and haven’t stopped thinking), what is happiness? Happiness is short- term. It’s a state of mind that comes and goes. I don’t even want to walk around happy all of the time: How boring, how false, how inauthentic. Still, it was painful to finally admit to myself: I am not happy; I am hopeful. The last three years of illness have taken a toll on me. I have, truth be told, been more sad than happy. But I certainly don’t need to berate myself for this—I have compassion for myself, AND I’m ready to outgrow some of what has held me down. But still, the more I thought about it, happiness is not the end goal. Too much pressure. I know enough now to know that I have no idea what life has in store for me—there will be joyous times and shit times.  I think being “happy” is a bullshit blanket statement. I almost wanted to take that word right out of my vocabulary. I was so mad at it. I wonder how many people feel pressured to be happy? It’s not what I want.

I want PEACE. I want an inner peace so sturdy that it can hold the joy and the sadness—the ups and downs. What a freedom to not be striving for happiness. It lands me right in the present moment. Peace. When do I feel most peaceful? When I am most connected to something bigger than me. When I am helping others. When I am present. HERE, doing the next right thing. Whether that’s peeing in a bottle, drinking lemon cayenne water to bust my mucous, watching Schitt’s Creek,  getting on the stage to perform, writing, having sex, talking to friends, and the list goes on. Peace is possible. I’m excited to have something new to strive for everyday. I feel free.

Other things I wrote/ am offering this week:

On patience

On romance

with fun and love and peece,

Jackie

 

 

 

 

 

 

 

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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