But You're So Young

If I had a quarter for every time someone exclaimed those words to me, I'd be a rich woman: "But you're so young!"

People are frequently astonished by the number of doctors appointments I've had, tens of thousands of dollars I've spent, and variety of specialists I've seen during the past five years.

Endocrinologists, gastroenterologists, naturopaths, orthopedic surgeons, neurologists, otolaryngologists, gynecologists.

Today I had a marathon of doctors appointments, from 8AM until 5PM.  I was told two important things: I'm special and I'm so young.  I suppose the two go hand-in-hand.  My body is so young that my chronic illnesses make it "special," and I am special so I was bequeathed the duty of bearing these chronic illnesses.

Hashimoto's thyroiditis.  Faulty thyroid.

PCOS.  Faulty ovaries.

Insulin resistance.  Faulty cells.

Meralgia paraesthetica.  Faulty nerves.

Chondromalacia patella.  Faulty bones.

Small intestinal bacterial overgrowth (yet to be diagnosed). Faulty digestive tract (I'll spare the details).

Chronic otitis media. Faulty ear canals (and faulty earwax).

And, for those reasons, today the neurologist's physician assistant proclaimed, "But you're so young!"

I returned home from my appointments feeling a little blue.  It's difficult not to be overwhelmed and sinking in a mire of self-pity when you're thrown orthotics and leg braces and physical therapy prescriptions and nerve tests and ear-canal suctioning and advisement to lose weight; when you're told your "special" ears (the doctor's words, not mine) require regular cleaning treatments and that you'll likely require knee replacement surgery in the future and that there's a 30% chance you'll never regain feeling in your thigh due to nerve damage.  After all that, you begin to share in the PA's sentiments--but I'm so young!

Every part of my body is affected, from top to bottom.  There is some faulty part of me in every section of my anatomy.  When you think of all those faulty bits, the distinction between faulty components and faulty whole becomes blurred.  I feel faulty.  I am faulty.

The one ray of hope that shone through the dark cloud of my brooding was a recollection of Paul the Apostle's words: "So we do not lose heart.  Though our outer self is wasting away, our inner self is being renewed day by day.  For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison,  as we look not to the things that are seen but to the things that are unseen.  For the things that are seen are transient, but the things that are unseen are eternal" (2 Cor. 4:16-18).

Reflecting upon those words now, they bring tears to my eyes.  Yes; my outer self is wasting away.  Yes; I face affliction.  But, as my body undergoes treatments and receives diagnoses and becomes more and more faulty, my spirit is being made more whole.  I am being conformed more and more to His likeness.  My suffering is actually light and momentary.

"The eternal weight of glory beyond all comparison."  Those are words I want to cling to on days like today.  The eternal weight of glory.  The burden of my illnesses feels much lighter knowing how much weightier the coming glory will be.

My body is transient and temporal.  His purposes are eternal.

The Slow Life of Recovery

A fellow autoimmune-disease-sufferer recently described the healing process as "slowing down life to a crawl and setting boundaries."  For a lifelong perfectionist and overachiever, the "slowing down life" part of autoimmunity can be wearing on the self-esteem.  Mind you, I have no trouble at all with the actual slowing down of life; I can lounge and binge-watch Netflix like any good couch potato.  It's the thinking related to the slowed-down life that sometimes gets me down.

I am fairly content right now with my circumstances, not because I feel like I am fulfilling my dreams and passions, but because I feel like I can breathe and wake up in the morning without wanting to die.  I know that sounds melodramatic.  But, I know that my autoimmunity has gotten the better of me when I struggle to get out of bed, when tears constantly seem to be seeping out of my eyes, when I stop being able to make decisions and feel like my sanity has left me.  My body becomes inflamed, my thyroid swells and affects my swallowing, my joints hurt, I crave sugar and fatty foods.  I can't sleep at night.

I recently made the difficult decision to leave a full-time job after only two months of employment.  I had been pursuing special education for the past few years, and I applied to jobs like the one I took in an effort to maintain a cohesive resume.  However, it only took about a month for me to realize that the job was killing me--really--and that I needed to seek other employment if I didn't want to end up hospitalized.

A retail position in my hometown providentially opened up right at the time I finally had the courage to give notice at my old job.  I was offered a new job that has nothing at all to do with my bachelor's or master's degrees and really doesn't formally require any specified education, but it doesn't add stress to my life.  In terms of the amount of mental exertion it requires and stress it causes as compared to my previous role, the position would be classified as slow--a slow job for a slow life.

It's actually been fascinating to see how my body has responded to stressful situations in the past few years.  Normally I shut down completely and have the urge to flee.  I am thankful that my body takes care of itself even when my conscious mind tries to push me beyond reasonable (for me) limits.  I dropped out of graduate programs, moved across the country and back, changed majors, changed jobs.  It may seem reckless and confused to an onlooker, but really the back-and-forth nature of some of my decisions and life activities has been nothing more than a battle between my body protecting itself from breaking down and my mind telling me that I need to live up to my own unrealistic expectations.

It is humbling working in a retail position with a master's degree in hand.  I am not making very much money (not even enough to meet my basic monthly expenses).  I live with my parents.  Sometimes I feel as though my intellect is atrophying.  But I'm breathing.  And I'm alive.  And I'm not just surviving.  I am still inflamed and my thyroid is still swollen and my joints still hurt and I'm still 30 pounds heavier than I normally am.  But I have hope.  It's going to be okay.  I'm going to be okay.

The same person that described healing as a slowing down of life also said that it is how we recover from autoimmune burnout that is most critical.  I can think about how I'm not using my graduate degree; or, I can think about how amazing it is that I was able to earn a master's degree despite the mass of obstacles I've endured in the past couple of years.  I can think about how I don't have a career and haven't met my earning potential; or, I can think about the ways in which my current job suits me and allows me the freedom and flexibility to sleep in and see doctors during the week because of my nontraditional schedule.

My fellow autoimmune-disease-suffer said that as our lives slow, we not only heal from years of exhausting our adrenals, but we discover our purpose.  And, according to him, it is after that simultaneous healing and finding purpose that we can thrive.  When my life is slower, my mind gets quieter.  And when my mind is quieter, I stop pushing myself.  And I listen to my heart.  And I let my body lead.  When my life is slow, the first threat of stress immediately gets pushed away.  That's how I know I'm not ready.  And somehow it's easier to listen to my heart when I know I'm in a season of waiting.  The perfectionist, over-achieving tendencies get shelved because I know there is nowhere to push myself.  I'm waiting.  I'm not ready.

And I think that when I am ready, it won't be my conscious mind pushing me anymore, but my heart guiding me into the happiest, healthiest places where my body knows it will thrive.

The Unhappy Mind of an Unhappy Thyroid

I sat in the family room with my parents while my mom read and my dad channel-surfed.  I had my dad check what was playing on a few of the T.V. stations that I usually enjoy, and saw that The Little Couple was on.  Some years ago I was a dedicated viewer of the show, so I felt sad to hear the recent news of Jen Arnold's cancer.  The show features the day-to-day experiences of two little people that are married, and Jen is the wife in the "little couple" duo.

After watching the show for a few minutes, I was awed by Jen's attitude.  She was born with dwarfism, underwent multiple surgeries and hospitalizations as a child, struggled with infertility, battled cancer.  She lives in a world where her stature makes her 'abnormal,' which adds to her slew of trials.  I began to think about how inspiring it is for people who face adversity to maintain positive attitudes in light of all the negativity they could focus on.  I can think of a woman I knew who has now passed from cancer, but while she was still alive and undergoing chemo, she exuded peace and joy unlike even the healthiest people I knew.

But then I started to think about maintaining a positive attitude when you have Hashimoto's disease.  You can tell yourself to buck up, or just think positively, or focus on all the good in life.  Hey, it's not cancer, right?  The fact is that autoimmune thyroid disease often robs you of the ability to be positive in the first place.  The depression, apathy, negative moods, feelings of worthlessness can be profound--and they are all due to the malfunction of a butterfly-shaped gland in the throat.

Perhaps that's what makes invisible autoimmunity particularly ravaging on the body.  Not only does Hashimoto's cause physical pain, exhaustion, brain fog, weight gain, but it also takes control of the very ways in which we think.  Even if we wanted to think positively in spite of our circumstances, we can't.  And the loss of control over our very perceptions of the world and ourselves makes us feel very helpless indeed.

I don't mean to minimize potentially fatal conditions by any means, but only to point out that autoimmune disease is a beast of its own.  Sometimes I'm hard on myself for not being more upbeat or energetic or productive or grateful.  I forget that my hormones are giving my body all the wrong signals, and my metabolism is sluggish, and I'm experienced chronic inflammation.  It's so good to be thankful no matter what a person's lot--but it's also okay to be sick and to validate very real experiences of suffering, without feeling guilt associated with not focusing on blessings apart from illness.

I think, for me, a loss of some sense of control over my body has been one of the hardest parts of battling autoimmunity.  Currently, I feel as though I've given up even trying to control the things that I can--and I find this makes my condition worse.  The elimination diet, and carb-counting, and exercise regimen actually give me greater health.  But perhaps some part of me is in denial that those things are a necessary part of my reality, and so I willfully choose to ignore them as a means of reasserting control over my life--which actually ends up leading to less control as I become sicker and my overall mood declines.

It's a tiring cycle, and sometimes I wonder if I'll be forever mourning the loss of what would have been a 'normal' life.  You would think that by now I would have come to terms with my reality, but I still think longingly about what could have been (or, perhaps even what I thought should have been).  The one chance I have of finding positivity amidst the struggles (a.k.a. controlling my mind) is to take control of my body and health in the few ways I can.  Even if I can't choose to be happy right now, I can choose to take better care of myself, which I hope in turn will bring with it the happiness.

A Commitment to Newness

Last summer, I dragged my brother along with me on a field trip of sorts to our local Barnes and Noble.  My goal was to gather a variety of magazines to be used in creating a vision board.

For those of you unfamiliar with the concept of a vision board, it's basically a poster filled with a collage of pictures that cast a vision for an individual's life.  They are like a map of dreams, and supposedly have some sort of psychological effect on people so that those dreams are more likely to be fulfilled (I have no data on this, just a recollection of something I read in Oprah's magazine once).

My sister is a passionate proponent of vision boards, and is now fulfilling many of her own dreams by way of her recent move to Brazil.  So maybe the boards do have some underlying powers over the subconscious.

After choosing a variety of relevant magazines, ranging in central topics from photography to women's health to interior design, I dutifully searched for and cut out the photos and text that seemed to best represent what I hope for in the immediate future.

Pictures of chiseled abs, runners, women lifting barbells.  The words look good feel better, healthier, diet, gym, healthy weight, fight off cravings, exercise, strong, respect yourself.

Pictures of church steeples.  The words believe, change the world, truth, love, renewed views.

Pictures of camera gear, interior design drafts, paintings, drawings, hands holding pencils, marble busts.  The words photograph, crafting, create, design.

Pictures of women posing, pretty dresses.  The words confidence, myself.

Pictures of dogs.  The word dog (did you think I'd create a board without this?).

Pictures of yoga poses, women free in creation, women on scooters, women smiling and laughing.  The words content, peace, embrace, live, still, play, centered, free.

Pictures of brick walls, houses surrounded by fields, plant-adorned walkways, brightly-painted buildings, the coastline.  The word beauty.

Pictures of groups of people smiling, girls laughing together.  The words people, friends.

Pictures of libraries, writing desks, people sleeping in fields with their notebooks, home offices, hands cupping mugs next to open books.  The words ideas, influence, words, dream, think, your heart's desire.

Despite the fact that I spent so much time scouring each of my carefully-selected magazines for pictures and words, I have yet to actually create a vision board.  The cutouts sit in a stack hidden away in my desk, perhaps symbolic of the way in which my dreams stagnate.

For those who celebrate a religious Easter, the holiday commemorates newness--the new life given to people through the death and resurrection of Jesus Christ.  He rose again so that we might be able to be spiritually reborn.

With the theme of newness in mind, I think back to the pictures for my dream map.  I have a renewed desire to take the time to actually assemble them together on a poster, much in the same way I have a renewed desire to act on and pursue my dreams.

Newness.  A commitment to healthy eating and exercise that pushes my body.

Newness.  A commitment to my faith and finding a church that fits.

Newness.  A commitment to my creativity and continuing to experiment in as many mediums as possible (without letting me talk myself out of anything).

Newness.  A commitment to accepting and loving who I am, flaws and all.

Newness.  A commitment to continuing to be a good dog-mom.

Newness.  A commitment to enjoying life fully.

Newness.  A commitment to creating and finding beauty in the world.

Newness.  A commitment to forming new and nurturing old relationships.

Newness.  A commitment to time for contemplation, reflection, writing, and pursuing my dreams.

So Easter is my New Year, a time that marks the newness that I hope to find in my life in the coming months.  Sometimes I'm so busy concentrating on my illnesses that I forget that it's not time for me to mourn my life (or what would have been a "normal" life).  While my conditions do place some limitations on the future, there is no reason they should be stopping me from living.  I need to renew my mindset so that I no longer think that way.

Newness.  A commitment to moving forward in spite of my diseases, allowing them to make my life richer instead of allowing them to stunt me.

Behold, He is making all things new.

Sharing Our Lives Beyond the Keyhole

Some time ago, I read an article that compared our observing other people's lives via social media to seeing someone's life through a keyhole; we have a very limited perspective of what actually goes on in that person's life, and by and large those observations are of positive events (marriages, births, new jobs, moves, etc.).

In thinking about what it means to be authentic, I recognize that true authenticity means sharing the not-so-good along with the good.  When we "keep it real," we tarnish the façade of a perfect life and remove the possibility of even creating that notion in the first place.  In cultural studies, we often talk about how the abnormal is only defined as such by its relationship to the invisible, unmentioned "normal"--the diseased in relation to the healthy.

When we make our struggles less private, we make them less powerful.  My logic in this is twofold.  Firstly, oftentimes our experience of suffering is tied to some sense of denial.  If we keep the struggles a secret, they seem less real to us.  It allows us to keep from acknowledging the true condition of our lives.  Secondly, we usually cling to a lengthy set of assumptions regarding how people will view our diseases (which, in itself is a word rife with negative meaning).  We give in to the idea that we are abnormal, and hence reinforce that "abnormality" by separating ourselves from "normal" people and hiding the suffering we endure.

For the past few years, I know that I've begun to increasingly hide out in my suffering.  My mind goes through a similar script: "They just won't understand," "I'm different than people my age," "I'm weird," "I don't want to deal with all the questions," "It's easier to just stay away."

Additionally, I think that for me hiding out is a way of ignoring my real circumstances.  I think back to how life was 5 years ago, 3 years ago.  Since I'm not happy with how things are going now, hiding allows me to distract myself from what's going on and save the need to give a lot of explanations to people, even those I once considered myself close to.

But, lately I've been thinking about how stupid it is to hide what's going on in my life--to attach all these negative meanings and beliefs to things that are, truly, so small in the grand scheme of things.

By keeping it real, I can share things like:

• I take 32 various pills/capsules throughout the day (mostly vitamins and supplements).
• There is a list of something like 30 specific foods/food groups I cannot eat.
• I've gained 30 pounds in the past year and 9 months because of thyroid and reproductive hormone imbalances.
• Many people my age are married with kids and a mortgage, but I had to move in with my parents because living on my own almost killed me.

There is something powerful about making these truths un-private, and acknowledging the reality of my circumstances.  By saying, "Yes, this is my life.  This is just the way it is," I think I somehow take a little more control of what's going on, and it removes all those voices telling me I'm weird, different, abnormal.  It empowers me to make changes where I can, and in cases where I can't, to recognize that my diseases place certain limitations on my life but none that make me need to isolate myself from other people.

About 6 months ago, at a particularly dark moment in my autoimmune experience, after reading that article on social media and keyholes, I wrote a haiku entitled "My Grass Isn't Greener."

What if my keyhole

Didn't entice the viewer

Filled with emptiness

The reality is that each of us struggles and suffers.  We all encounter trials and tribulations.  None of us is perfect, and I think most of us experience feelings of being abnormal and not belonging.

So what if instead of sharing with one another only our keyholes, we share with one another our lives beyond those very limited views?  What if we become truly authentic, and keep it real by owning up to what's really going on in our lives?

I wish we lived in a world where the focus wasn't so much on fitting in, but on being as genuine as we could possibly be.  I know that the plastic bodies, veneer smiles, and hot cars will never go away.  But it's nice to envision a place where people feel free to share their not-so-good parts, and those not-so-good parts are viewed no differently than the "good" parts.

I wish we could see one another holistically.  I wish we didn't have to live in fear of one another.

Finding Purpose in the Ashes of Suffering

This afternoon, I started to half-consciously ask myself, "When did I become so filtered?"

At what point in my life did I start worrying about what people thought of me?  When did my writing change because of how it would be received?  When did my art stop because I didn't think it was good enough compared to real artists?

When did my childhood dream of working in a shopping mall on Mondays and an artist on Tuesdays and Wednesdays become not okay?

I wish we weren't filtered.  I wish we were real, authentic, genuine people.  I wish we contributed our unique gifts to the world.

Earlier, I read a quote by Vartan Gregorian: "The universe is not going to see someone like you again in the entire history of creation."

We are so driven and simultaneously trapped be our senses of duty and responsibility, by the endless struggle for survival and striving for success.  We think that more money, power, love, (whatever) will bring us more happiness--will provide us with more room to find the real 'us.'

But perhaps the very identity--the truest and deepest identity--we hope to find is the one that is found without money, power, human love, (whatever).  When we can pursue our dreams in spite of potential losses, in the face of great odds, then I think we are living authentically.

In our world of options and possibilities, I think it's become increasingly difficult to find a niche.  There are so many directions we could take, and sometimes I believe our own thinking paralyzes us from taking action.  What's more, creative/alternative enterprises and careers are not celebrated or compensated, and so there is little motivation to pursue what is potentially a person's true heart's desire.

I think that highly sensitive people and INFJs are particularly susceptible to feeling lost.  HSPs are overwhelmed as it is by sensory input, and so to present them with endless choices is to overload their psyches.  And for the INFJ, there is this need to contribute to the greater good of mankind and make a mark on the world--and so often we fear that we will somehow make a wrong turn and miss our calling.

Barbara Sher, in I Could Do Anything, writes that truly knowing how to live means believing in what you're doing with all your heart--regardless of wealth and status.  According to a Harvard study, real happiness is dependent upon a person's knowing what s/he wants and believing that s/he is moving in the direction of that goal.  Sher claims that our skills are of little consequence, but it is what we love to do that should guide our careers and lives.

I believe that each of us has a particular calling and purpose.  I know that, for me, the autoimmune journey is somehow deeply tied to my own.  I think all of the trials we face make us more compassionate, empathetic, and authentic; they bring us closer to becoming the people God designed us to be.

Sher states that in times of war, there are fewer incidences of depression because everyone feels that the work they do has great meaning.  All efforts, large and small, are necessary for the survival of a community.  I think, then, that times of adversity maintain a particular ability to awaken our sense of purpose.

When we become ill, our options and choices are sometimes limited, which can focus how we spend our time.  But, perhaps more importantly, when we become sick, we no longer have the time or energy to devote to causes that don't truly arouse our heart's interests.  And our perspective goes through a sort of spring cleaning in which we catalog those dreams that are truly important, and everything else is released.

Autoimmunity forces us to reevaluate everything in our lives.  And it tests us, in every way, and often shows us we can endure more than we ever thought possible.

With a new-found awareness of that strength, how then can we live believing we don't have something meaningful to contribute to the world?  Creativity and beauty and authenticity?

Recently, a customer where I worked asked me about my philosophy on art and creativity.  He wanted to know what I think about humans' artistic interests.  I told him that I believe we were fashioned to imitate the Creator, to create beauty that reflects His glory and truth.  I think we were fashioned to be like Him.

And what a beautiful thing, to know that out of the ashes of suffering, rises the beauty of art.  He uses our experiences to allow us to create that which will bring glory to Him.  Our suffering is not needless, but in fact reveals truth.

Knowing that my illness ultimately does good, how then would I be able to complain or live immobilized by my own self-pity?  I rise up out of the ashes and create.