Own it, Girl.

I forgot I had MCTD.

Since Christmas, well, since I can remember really, I haven’t experienced a flare-up. I’ve been eating healthy, exercising almost daily, working late and sleeping well. Sure, I’ve been tired. Sure, I’ve thought about my slow muscle recovery, but only after a challenging workout with my new trainer. I’ve felt achy here and there, and there’s been some swelling. But nothing like it used to be. Nothing.

I forgot I was sick.

It all started with one cough, two weeks ago, and since then I have been in the slow, painful process of remembering. This doesn’t feel like a regular flare-up. It’s different, less controllable and less able to be slept or stretched away.

When I went to the doctor’s for the second time this week, I was shocked to hear that lung infection is a common, serious complication of MCTD. I was surprised with myself, much more than this news. I knew that. I knew that MCTD was bigger than the genetic markers that confirmed my diagnosis, the achy joints, swollen appendages, and immune issues. But I never wanted to admit it.

Admitting I’m not the athlete, the stay-up-all night student, or the energetic friend I used to be has been too much. I still can’t let go of all of those pieces of me. So, my way of telling people about my disease has always been with a laugh or a comparison to the flu; something minimal and fleeting. For this reason, I get slews of the following responses:

“But you never look sick?” They say.

“Enjoy those sick days!” They laugh.

“That sounds like a made-up disease. Too many letters.” They play.

It’s taken me a long time to understand why I do this. Since being diagnosed three years ago, it’s taken a lot of frustration with the people closest to me in my life to see that inside, I just can’t admit to myself how sick I am. I’m scared. I don’t want to be twenty-three and fairly certain about how this is all going to play out. I pretend like I just have a sore muscle here and there, letting people believe that my MCTD isn’t a big deal. I allow them to laugh at my pain.

But now, I don’t want to laugh anymore. I just don’t want to fall apart. I don’t want to miss more work, or feel more confusion or discomfort. I just want to accept the hand life has dealt me, and do the best that I can with it. This journey is long. This journey can be lonely if I don’t let people in. 

My greatest fear, I think, is of becoming G., the girl with MCTD. I don’t want people to stop inviting me out because they’re afraid I’ll have a flare-up and need to be taken home. I don’t want my gym buddies to comment when I pick up a ten pound kettle bell instead of a twenty-five because my fingers are just too weak that day. I don’t want people to think I’m pretentious or judgmental because I can’t eat gluten-y pizza or ice cream with them because it makes me sick. I also really don’t want people to think that if they stand too close they can catch what I have.

I think the key to coming to terms with my MCTD has to transcend the way I want people to see me, or not see me. I have to come to terms with this for myself, not anyone else. I am not my disease, but I will never be separate from it. It’s my struggle, and my burden to bear. I can’t blame myself anymore for a condition I didn’t contract or catch or will upon myself. At the end of the day, I just want to be my version of normal. 

So this is where I am at. Today, despite my nervousness for the onslaught of new tests I will have to go through this week, I see a lot of hope in this journey. I am blessed with so many great things, people, and experiences in my life. I have good friends who support me, and a job that allows me to help others and not worry too much about the doctor’s bills and expensive groceries. I am informed about my condition, and I am young and ready to fight. I’m scared, but I’ll do whatever it takes to just be ok.

Now, it’s my time to love myself. All of the parts of myself, even the sick ones. Maybe I can help others who struggle with the same disease that I do every day. Maybe I can just be more honest with the people I love. Either way, I am thankful, I am getting better, and I am blessed.

 

Image

A page from my Grandfather’s journal. Miss you every day.  

“You’re on a mission from God”…

…reads the shirt staring at me, long and hard, across the crowded coffee shop. The man displaying this motto across his chest is unassuming, weathered, and lost in a book.

I sit two tables and many lifetimes away from him, flipping intently through one of my favorite college books, “The Forgotten Desert Mothers: Sayings, Lives, and Stories of Early Christian Women.” I’ve picked this gem up again because I’ve been feeling particularly womanly lately, a feminist mystique radiating from my usually gender-mellow aura.

I think that this lady charge comes with the onset of winter break, and the frenzied state of my school and classroom. I have slipped into mom mode. I’m living in hushed tones and deep breaths, trying to maintain some semblance of order. Constantly redirecting frustrations, tears; shooing and ever-so-sweetly directing children to calm the hell down. Please. Sweetheart, please.

Nonetheless, here I sit in the midst of my “me time”, investigating the ancient paths of some of the most thoughtful and inspiring women warriors.  My hope is that I can learn from them. Since it’s a Sunday and I still need to lesson plan, maybe I can find the answer to something simple like, “What is my purpose in life?” That is what’s been on my mind lately, after all.

The introduction to this wonderful book alerts me to the realization that if only my thinking was clear, and I conformed myself to rational thought, my life would be on the right track. Naturally, I wonder, how in the world do I manage to engage in something even close to rational thought with the complexities of the life that I lead? I mean seriously, just last week I got the flu, had my chapstick stolen and then returned (ew… not a big deal just really annoying), and put in a seventy hour work week.  I laugh in the face of clear thinking and rational thought. HAHA! Of course these ancient broads could attain enlightenment!  All they had to do was renounce all of their things and run off into the desert for some locust-filled bon bons and casual R & R. SPRING BREAK 1100 B.C.E. I wish.

However, as I begin to really read into their accounts, I realize that for them, leaving their homes, homes that were comfortable and lavish, wasn’t awesome. At first, I saw them as quitters; leaving behind their messy lives for self-actualization in the desert. Vacation monasticism.  However, as I read on, I get the sense that they really did want to be closer to God, and that their trip into the desert wasn’t an escape, it was a challenge, and a burden they were willing to take in the name of everything they believed. The Ammas left their lives of riches and comfort, to become mindful and intentional about their lives and their paths. They entered the desert hoping to find meaning through sacrifice. They were cautious, without the negative connotation of fear.

When I open myself up to this perspective, and take a look at my own life, I realize that there is no desert to flee to. This is simply because the desert is already here. I am already encompassed in the dunes and soul-searching of the desert mothers. There is no pilgrimage outside of the one that I am already on. Especially now, in the wake of school tragedies and desperate cries from children across America, the group most hardened and marginalized by our country’s troubles, I feel like I must be brave as I confront this new wilderness.

When I think about it even more, whatever comfort I did have I forfeited on this journey into the harsh environment of middle school and post-graduate “real” life. Now the question remains, what is my goal? If the classroom is my ascetic wilderness, do I stay there until I attain enlightenment? Do I allow this experience to open my heart and remind me of how I want to live?

The mothers saw the desert journey as an opening for vulnerability. This leads me to an understanding that I must open myself up to my job, even the parts that I don’t like, with a respect and understanding of the goal, the whole, whatever it may be. It’s scary, you know, letting yourself be bad at something new. A struggle is a struggle; whether it is under the heat and scrutiny of the hot desert sun or the fluorescent lights of my classroom and the constant drone of misunderstanding and test scores that don’t make the grade.

I think about my quest for enlightenment and my need to have it all figured out. I get frustrated with myself when I don’t have all of the answers. But then I think about what I tell my students every day: “It’s not that you don’t understand. It’s just that you don’t understand, yet.”

The “yet” is what keeps them going. It reminds them that education isn’t final. They’re not losers or winners. They’re just learning. And while I can research desert life and asceticism until I can hear the crunch of sand and filth under my sandals, or feel the sting of sweat in my eyes, nothing is more powerful than the “yet” of my own journey. Sure, I don’t know the ultimate goal that I’m supposed to be searching for in life, but maybe nobody truly does. All I know is that I’m searching for something; inner peace, true happiness, love or the like. Maybe I’ll never find the illustrious meaning of life, but I can sure enjoy the parts of life that I don’t understand…yet.

“…One afternoon at four o’clock we separated…

…For a week only … and then-

That week became forever.”

-Constantine Cavafy1

I have been reading lately. Yes, me, G., the once crazed work-a-holic teacher has found time to read, and see my personal trainer three days a week, and even host friends from out of town on “GASP!” a school night. As I’ve opened myself up to literature, every book I pick up has seemed to have a focus on loss. Thus, my musings lately have been focused on the topic, especially the absence of certain people and moments in my life that I continue to miss while I move on.

In her book, The Inheritance of Loss2, Kiran Desai asks, “Could fulfillment ever be felt as deeply as loss?” She remarks that “love must surely reside in the gap between desire and fulfillment, in the lack, not the contentment.”  This got me thinking that when it comes to loss, we are left with so many “maybes”.

Maybe I didn’t need that person in my life- I only miss them now that they’re gone. Maybe I imagined or aggrandized their significance. Or, especially when it comes to the loss of someone we truly love, we wish ourselves to believe that maybe, just maybe, they will come back.

Whether we are dealing with loss in the form of a temporary absence, or an eternally ended life or love, it all seems to come down to timing. During times of struggle, people have always told me that God gives you only what you can handle. While I have internalized and admired this philosophy, at times it is hard to take.

For instance, two Octobers ago, when I lost my Grandfather, was it that I had not hit my stress quota for the month, the year? Did his death need to occur to remind me of something, perhaps the preciousness of life? Was it just about time for me to experience deep, irreversible and uncontrollable loss?

Since I don’t believe in the existence of some fate puppet-master, toiling away adding ingredients of grief, despair, or vulnerability to my life, I had to think of some reason why loss exists, and moreover, what I could do to move on.

The more I thought, the more I realized that the greatest remedy for loss is hope. Hope as a concept has always infiltrated our psyches. Since Pandora’s Box3 left us with nothing to hold on to but the sentiment, and Dickinson planted the “thing with feathers”4  in our souls, through our darkest times we as humans have been led to believe there is hope.

While I don’t believe people die or leave to teach us a lesson, I do feel that it is the audacity with which we embrace hope after loss that settles us.

I’ll never get over the fact that my Grandfather is gone. I still struggle with the reality that I will never curl up in his lap again, happy to be still and near to him.

When I am at the seaside, I look out into the blue and feel sadness and nostalgia knowing that I won’t ever again watch his strong, graceful body glide over the tops of waves.

And no matter how hard I listen to the song of birds outside, or the notes of a fine-tuned piano, I won’t ever hear his laughter, that deep expression of contentment exploding from his heart.

Despite all of these losses, this summer, I saw my Grandfather in Shenandoah. R. and I were on our way to Virginia to be with our Brothers, and in a fit of tenacious spontaneity, we stopped at the Rainbow Hill5 country store to buy wine and goodies for our weekend.

I walked into the place and was greeted by the smell of incense and the sweat of a hard day’s work. The man at the counter welcomed us with a smile.

He had a raspy voice from years of cigarettes and his hair was grey and white; as thick as it had been when he was young.

He spoke softly to R. upon seeing me migrate towards the wine room.

“She’s a Wine-O isn’t she.” He winked and chuckled that same deep, smile-laden laugh that comforted me as a child.

His words came out in a sweet, low voice out of the side of his mouth. It was that same voice that Grandpa used to speak when he told a joke meant only for me.

R. shook her head in compliance, “YES.”

As if this granted him permission to be near me, the man found his way quickly to my side, an arm around my shoulder, the opposite hand tightly wound around a bottle of merlot.

“There’s nothing like a good glass of red wine.” He smirked, happy to let me in on his secret.

My mind flooded with memories harkening me back to all of those nights where wine and dominoes flowed like water from a joyful fountain. We were happy, then, weren’t we? I, with my game pieces in front of me, the warmth from my Grandfather radiating at my side. I felt full of something, then, something sweet like happiness.

After the old man at the shop gave me the tour of his wine room, told me about his past and his present, R. and I gathered our thoughts and our things and prepared to leave.

On our way out I told the man at the counter that he reminded me of my Grandfather. I told him that seeing him that day, in that moment, reminded me of just how real the love and connection between Grandpa and I was. He responded by saying that it made him feel good to hear that, and he smiled that smile that sealed our encounter.

It was at that very moment that I noticed his bottom teeth. Just like Grandpa’s they overlapped and gapped and jutted out at odd angles. I laughed one more time, reminded of the beauty of his gaping mouth. I remembered that mouth from countless laughs, and especially from those last few days when he snored helplessly on that hapless hospital bed.

Tears filled my eyes as we left Shenandoah. They were not tears of sadness, but ones of remembrance, thanksgiving, and hope that I could again, someday, feel the warmth of love and connectivity I lost along with my Grandfather.

In the end, what is the moral of my contemplations? For me, it is to remind myself to always listen deeply to the heartbeat of the closest person you cherish, to let yourself let go in love. But most of all, I have learned and begun to strive to be hope to others.

Along with the million other maybes that cloud our days, I try to stop to think that maybe, just maybe, I am the smile that reminds someone life is still possible and that happiness, as changeable and fleeting as it is remains. By being myself, I find that my capabilities for inspiration can never be lost. For it is in myself, and the many maybes that bring me light and love, that I find the courage and the power to still hope.

Sources:

1. Cavafy, Constantine. “The Afternoon Sun” http://www.poetryfoundation.org/poem/181786

2. Desai, Kiran. The Inheritance of Loss. http://www.nytimes.com/2006/02/12/books/review/12mishra.html?pagewanted=all

3.  “Pandora’s Box” http://en.wikipedia.org/wiki/Pandora’s_box

4. Dickinson, Emily. “Hope” http://academic.brooklyn.cuny.edu/english/melani/cs6/hope.html

5. Rainbow Hill http://www.rainbow-hill.com/

“When you’re ready” …

bellowed Steven, the friendly bearded man at the natural foods store counter.  To him, it was a simple prompt for me to enter my PIN and pay for my groceries. But for me, “When you’re ready” grabbed my gut and I looked up at him, smiled, knowing that he had no idea how many loads he had lightened for me today.

This past week, I have been to a slew of doctor’s appointments getting my mind and body prepared for this upcoming school year. The theme of this phase has been readiness and prevention (OBAMA!), specifically in the hopes that I can control the amount of flare-ups I encounter this year. After being diagnosed with Mixed Connective Tissue Disease (MCTD)1 two years ago, my life has revolved around rheumatologists and Rhodiola. In the heat of uprooting my life to Louisville, starting my first big girl job, and beginning a Master’s program, my health took a serious beating and I was essentially living in one constant flare. I felt like I was running the length of the Reading Rainbow daily, trying to do everything for my little darlings while providing no center for myself.

This summer, I’ve forced myself to relax. I haven’t really thought about school, I’ve been working holistically to better myself, and I’ve come a long way. Thus my frustration when only three weeks before school is scheduled to start, I feel like I’m losing my grip on all of it.

It makes sense. Hyperanalytical G.  and her mental hermeneutics have done it again! FOILED.

This time, though, instead of letting me get me, I am trying my best to focus on what logistically I can do to prepare for school, calming the voices in my head that tell me I never do enough. Up until this point, I didn’t feel like my summer vacation was over, and I was unready to get myself together. But, now I feel that I can’t spend any more time worrying about a classroom that doesn’t exist yet, students who haven’t thrown tantrums, and paperwork that isn’t stacking up in my face. So, instead of doing all that, finding myself feeling like a normal person this morning, I went to my work corner, cleaned and organized it all, and have prepared myself to start preparing. The relief I feel is fantastic.

So, I think to myself, why can’t I apply this readiness factor to all of the other things I’m doing in my life? Slow down, take it all in, let things get to work and stop the rush. I am doing that already in certain ways and it’s been fine. For example, after removing gluten, soy, dairy and excess salt and sugar from my diet, I feel fabulous. But that took time. It’s been nearly three months since I’ve made those changes, and I’m just now really drinking the Cool-Aid from the limited diet altar. It works for me; I’m not going to fight it anymore no matter how much the “Krispy Kreme and Coffee” marquee off the highway harkens me to those double doors.

Continuing with this idea, I was up last night, ruminating over comments from quite a few dear people in my life who have mentioned the idea of me seeking more medications for what I’m going through. Whether this is for psychological support, or steroidal supplements to sooth my joints and muscles, it’s been weighing a lot on my mind. I really pride myself on being a minimalist when it comes to medicines, and I think I’ve found a good balance between trusting prescriptions and finding natural support. I’m far from an Echinacea-toting hippy, but I do like feeling secure about what gifts I’m bringing into my temple.

So, here’s the deal I made with myself. I will now transcribe the conversation encountered between Doctor G., who is a supportive friend and confidant, and Self G. who, is… myself. Here goes.

 

[START]

D.G.: “Don’t rule out the possibility that you need more medicine in your life.”

S.G.: “But, medicines are scary, and what if they thwart my innate healing process and make me feel weird?”

D.G.: “Have you ever tried anything that has been recommended to you?”

S.G.: “No.”

D.G.: “So, you have no negative experiences on which to base these thoughts?”

S.G.: “Nope, and now that I think about it, (chuckles to self while remembering how looney she was upon taking some relaxation meds before getting her wisdom teeth out. Waking up to a mouth stripped of teeth, overcome with hysterical laughter was fun for everyone involved, she notes.) I’ve had one alright experience.

D.G.: “Good. So can we agree that if your yoga, and diet changes, and honest, truthful, wholehearted attempt at natural healing doesn’t work in a few months, you’ll try something new?”

S.G.: “Sure. Thanks for having my back, Doc.”

[STOP]

 

So, there it goes. I can’t convince myself that I’m ecstatic about my job, my anxiety, and other situations in my life, because I’m not, and Mama always taught me honesty is the best policy. However, what I can do is find the positive in it all. Most of that, I think, comes from doing things when I am ready to do them, and not when others assess that it’s time for me. I need to start living on my own clock, and feeling confident and strong in my decisions. Why? You ask?

Because I is beautiful, I is kind, I is smart, and I is important.2

 

 

Stay tuned for some musings on why I think I’m a modern-day ascetic. YOLO.

 

1Here’s a good link from the Mayo Clinic if you’re like “Huh? What fantasy disease is this?” Trust me ; it’s real and less than ideal. (http://www.mayoclinic.com/health/mixed-connective-tissue-disease/DS00675)

2…. Yes I went there (http://www.youtube.com/watch?v=UZimx1wHYcs).

So I’ve decided to make some new life changes… here’s why…

Nine years ago, I woke up at midnight in a hotel room gasping for air. Since that day, I have struggled to find relief from fear. Anxiety has controlled and consumed my life, pushing me towards precipices of danger and unhealthiness. I have struggled, persevered, and been on a constant journey towards inner peace. My successes have been fostered by a series of encounters with positive people and experiences, brought into my life through fate and chance.

Through time, and with this help, I have been in an increasingly calm and emotionally prosperous state. However, yesterday I experienced the worst anxiety attack I have had since my first. Fresh from a weekend in Virginia, a weekend spent happy, enjoying a blissful reunion with my brothers; I fell into a day-long comatose state of panic, fear, and overall pain.

I couldn’t identify the trigger. My mind raced, my arms and legs dripped sweat, and I feared that I could not be helped. I laid my body down on the hardwood of my living room, as R. rubbed my back and helped slow my breathing. I still couldn’t calm myself down, even after I played the piano for an hour, a usually soothing technique for me. I called my mom, mentors, friends, and still couldn’t feel right. It was in these moments of anguish, yesterday, that I realized my life has hit a breaking point.

My thoughts are controlling my life, and it’s time that I make them stop.

I have done a lot of self-discovery here in Louisville, focusing on the intersection of thoughts and feeling. With my therapist, we have identified that I am addicted to negative thinking. I don’t want to worry about death and flat tires and uncontrollable vomiting, but… I do. All of the time.

I constantly feel overwhelmed, helpless in my own understanding. Just trying to rid my mind of these negative thoughts has proved fruitless. I am content for a while, and then something innate or subconscious triggers me to delusions again. I need a lifestyle makeover. Thus begins my Yogic training.

Huh… what , G.? Yes, that’s right, I want to become a Yogi. No, I’m not renouncing any possessions (Let’s get real here, I have too many beautiful shoes) nor am I surviving on a diet of Locusts and dirt (is that even gluten-free?). I also don’t feel like this is a fickle, Real Housewives-style attempt at Yoga. There’s no “Let’s get sweet yoga pants and go to a Hatha class at the gym after Zumba” type yoga here.

As Barbara Stoler Miller writes in her translation of The Yoga Sutra Attributed to Patanjali, Yoga Discipline of Freedom, yoga “is the system that ‘yokes’ one’s consciousness to a spiritually liberating discipline” (ix). I feel like I am going to take this idea and run with it. For me this is a full-body, full-mind spiritual conversation that I need to have with myself.

Plus, what do I have to lose? Let’s meditate, share our stories, and be the better versions of ourselves that we want to be. Holler at your Yogi, it’s on.

 

 

***Please note that despite my Bachelor’s degree in Religious Studies (at least I’m not a total idiot, right?), I don’t know everything about the path to enlightenment that I am embarking on. Please also note that no one does.

All I want is to have an open, honest conversation with those I love about my journey and my discoveries. This will never come through a religious rant, or ideas that are not debatable. Debate me; help me to understand what it is I am missing in this beautiful disaster we all call life.

 

Sources:

Stoler Miller, Barbara. Yoga Discipline of Freedom. The Yoga Sutra Attributed to Patanjali. A Bantam Book/March 1998. ISBN o-553-37428-1.

The (WO)man, the Myth

This morning I woke up and thought to myself, “I need to share.”

It wasn’t that forceful need to share like you experience in Kindergarten when Bobby wants to devour the contents of your Barbie pencil box. He approaches you under the guise of creativity, hoping to talk you,  artist to artist, into sharing a few crayons, markers, or colored pencils. He stares at your box with such covetousness and need that you pull it away and tuck it under your chair. Neatly. In response to his tearful complaints, the teacher turns and tells you (YAH YOU!), “Geena. Don’t be greedy.” So you pass it to him. And watch him eat.  Your crayons, color by color.

No, this feeling I felt this morning wasn’t like that.

In the midst of eating an entire papaya that I found in the depth of my refrigerator (Gross.), I realized that I truly love to write.

This epiphany, of course, was anticlimactic. Everyone has seen the myriad of notebooks that fill my closets and bookshelves and nooks of space.  These books,  filled with poems and stories and silly thoughts,  taught me that I love to write long ago.

So, I meditated on my creeping amorousness for the written word for a minute and identified my desire as less of a new-found love for writing, and more of a loss of publishability. In my heart of hearts this is a loss I’ve been mourning for some time now.

My current life as an audience-less twenty something grad student/teacher/earth mother hybrid doesn’t leave me with much of an outlet for my creativity. This seems strange seeing as I’m surrounded by people who listen to my advice and encourage my responses. However, I’ve lost myself in a world where I’m used to listening and prone to keeping my ideas to myself.

In my undergraduate years, I had mind-blowing discussions with exotic advisers about life and religion and the world beyond my doorstep. I spoke the words of many tongues and gave presentations and wrote theses about my passions. People read them. People listened. I felt on top of my small world.

Now, I am Atlas. I hold up the worlds of others to keep them from traveling down the path(s) of destruction. The passion for my own creative thought, music, dance, soulful and authentic movement and sound dissipates with the pitter patter of footsteps into my classroom and the movement of fingers on keyboards that share empty tweets, texts, and posts.

Alas. Today it ends. Maybe no one will read this blog, maybe no one needs to for me to feel well-expressed.

Nonetheless, here it is, here I am. I’m proud of it.

 

 

                                                                                                 “Laconian black-figure cup, ca. 560 B.C. The two Titans endure the punishments of Zeus: Atlas holds up the star-studded heavens and helplessly watches the vulture attack his brother, Prometheus, who is bound to a column. (Vatican Museum)” [Morford, Mark P.O. and Lenardon, Classical Mythology Eighth Edition, 2007.]