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