For You, My Fellow Introverted Idealists, My Fellow Autoimmune Disease-Sufferers

What if I told a new narrative for my life?

Last year in one of my graduate seminars, we read a book by Geraldine Pratt in which she discusses transit lane versus trapped narratives.  Transit lane narratives are the dominant discourses of the most visible populations.  The ones told and retold by the media, in our schools, by way of a constructed cultural consciousness.  The trapped narratives are those of oppressed peoples, that get bypassed for the more "important" narratives--that stay hidden away because they contest our neatly-constructed cultural consciousness.  They would upset the status quo.

And, when I shift the concept of these narratives from macro to micro, I realize that I have designed the same system in my own life--for my personal narrative.  I have an idea of who I am or who I should be, informed by choices I've made over the years, words that people have spoken to me, beliefs I have been trained to believe about myself or have wrongly assumed about myself.  I have been fixated on one narrative that is defined by the woulds and shoulds and supposed tos.  A narrative that is neatly-constructed and deeply embedded in my self-consciousness.

Perhaps the real narrative for my life is trapped.  Or, a narrative for what my like could be is trapped.  All those beliefs I have believed and tales I have been told and assumptions I have assumed--but how many of them are part of His narrative, the meta narrative, and how many of them have become the story of my life simply because it is the same narrative repeated over and over...?

Can I frame a new narrative for myself?

Is there another narrative He wants me to tell?

My narrative for the past five years has been about disease and exhaustion and doctors' visits and medical bills.  It has been isolation and rumination and depression.  It has been giving up on a lot of maybes and possibilities.  The admitting that compromise and sacrifice are necessary evils of living with chronic illnesses.

I cannot rewrite my story.  I am who I am who I am.  I will always have my past experiences and my chronic illnesses and my passions and likes.  But my narrative doesn't need to be dictated by sickness or past experiences.  Illness is my transit lane narrative, but that doesn't have to be my narrative at all.

I don't know how to ride the line between living with a chronic illness and not letting it control me.  It affects a huge part of how I live my life.  But I think that I've for so long wallowed (I'm not sure that's the appropriate word) in the knowledge of my diseases that my every experience and very reality has been shaped by that wallowing.  I don't want to live life that way.

Additionally, before illness more or less came to control my life, I had certain ideas and ideals about what I wanted to do with myself--what I wanted to devote my time and talents to.  Sometimes I wonder if being diagnosed with chronic illnesses wasn't a sort of get out of jail free card--an opportunity to start out on a pathway I had never given myself the room to consider, at least not since childhood.

I'm still figuring out who I am.  What I like and what I'm good at and where my talents and passions will collide.  I'm still learning what it means to be an introvert (more specifically, an INFJ) and a Highly Sensitive Person.  What it means to be a cancer survivor and live each day battling autoimmune disease.  How I can live a healthy and happy life, finding balance between recognizing my limitations and not giving up on dreams.

I want to make a difference in the world, but that dream seems like such an amorphous and ambiguous thing.  I know I want to create, and organize, and contemplate, and help, and connect, and be independent, and embrace my values.  I don't want my work to just be work.  I want it to be my mission.  But I also want to take care of myself while on that mission.  No more grandiose dreams of high-stress overseas work with people.  I just want peace, and beauty, and authenticity.

I don't want to feel constrained by my past experiences or limited by my degrees or jobs or what people have told me about myself or even what I have wrongly or rightly believed about myself.  Can't there be a new narrative?  An emerging trapped narrative?  One that is true and good, but simply buried by more visible story lines?  Or, by ones that are easier to believe or that fit together more neatly as an unfolding narrative "should"?

What if I was brave enough to tell a new story?  To unearth a trapped narrative?  What if my life became something that no one, not even I, ever predicted or envisioned for myself?

I don't know what it would mean to live a trapped rather than a transit lane narrative.  Somehow it seems harder, scarier.  But also richer.  Better.  More beautiful.

And that is what I want.  Richer, better, more beautiful.

God, help me tell my story.

My Non-Linear Trajectory

Sometimes it's difficult for me to accept that my interests evolve.  In my mind, I would like my life to reflect some kind of linear trajectory--logical and focused.  I want the central unique purpose for which I was created to be obvious in all of my jobs and volunteer efforts, etc.

However, as I get older I realize that nothing in my life has ever (ever) gone according to plan.  I wanted to be a missionary.  That desire became more focused, and I decided that I wanted to work overseas with children.  I wanted to attend a Christian college, where I thought that I would receive the best training for my intended career.  I ended up at a (very good) state school.  I started out majoring in Liberal Studies, and within only a few weeks of my first quarter of college discovered the program was not a good fit.  I waffled in indecision over my major for nearly two years.  My university approved a new bachelor's degree in Comparative Ethnic Studies.  The program required two Ethnic Studies courses to switch majors.  I registered for the prerequisite courses and applied to switch majors, not really knowing what Ethnic Studies was, but certain it would better prepare me for work overseas.  I went overseas and worked as a missionary for a year.  I hated it.  I returned home to the U.S. and discovered that I actually really loved Ethnic Studies.  I wanted to get my Ph.D.  I was accepted into a doctoral program.  I went to visit the school where the program was and I freaked out.  Despite being offered a full fellowship, I decided not to go.  I considered divinity school.  I thought it would prepare me for religion-focused research in a doctoral program down the road.  I tried two different divinity programs.  I hated them both and dropped out of them both, one year after the other.  I ended up working in special education at the same time I made the decision to get a master's degree in Women's Studies.  I started the program, realized it wasn't a good fit, and then transferred into an interdisciplinary program that allowed me to take more education coursework.  I graduated and got a job in special education and hated it.  Now I'm in retail.

There has always been an innate drive to help people and make a difference in the world, but I don't know that I've ever pursued the best and most appropriate means of doing those things.  I've chosen very extroverted and emotionally-draining roles, and as an INFJ and Highly Sensitive Person, I burn out quickly.  I don't know that I've ever found a job that truly embraces all of my gifts without totally wiping me out on an emotional, spiritual, and sometimes physical level.

I loved the Comparative Ethnic Studies program at Cal Poly, not just because the subject matter fascinated me, but because during that time my lifestyle was perfectly suited for my personality type.  I spent countless hours pondering issues and ideas that were meaningful and aroused my passions for those treated unjustly.  I was in class during the mornings, but had most of the day to work on projects or papers and make decisions about how I would manage my time.  Focusing on the experiences of oppressed peoples made me feel like I was somehow making a difference in the world, if only because I was becoming a more aware world citizen--and thus could potentially educate others.  I wrote and read and had engaging intellectual discussions.  I worked for my professors doing editing and creating handouts and fliers, which tapped into my artistic sensibilities and need to organize and attend to details.  I conducted oral history interviews for a number of ongoing projects, which allowed me to connect with people in deep and productive ways that were based on pre-determined questions and thus didn't exhaust me.  In terms of my Clifton Strengths, Intellection, Responsibility, Relator, Input, Achiever, I was actively making use of all of my greatest assets.

The desire to go on for a Ph.D. was largely to mimic my undergraduate lifestyle, and not necessarily for the doctoral title or program itself.  With a high strength of intellection, I am drawn to any role in which I have a significant amount of time dedicated to critical thinking and making connections between ideas.  This is both a blessing and a curse.  I love to contemplate and learn and study and focus on big ideas, but my interests are at times so diverse and disparate that it would be seemingly impossible to focus them into one doctoral program.  Can't I just go to school forever?

The last few years have resulted in a significant amount of self-discovery and self-analysis.  After I lived in China and discovered that I am an INFJ, my entire self-perception and worldview shifted.  So much about myself finally made sense.  When I discovered last year that I am also a Highly Sensitive Person, it was like the final piece of the puzzle fell into place.  I'm not crazy.  I don't think I am unique as an HSP who struggles with deciding on a career path.  I wonder how many HSPs are also INFJs, and how many of them also have a strength of intellection?  How many of them struggle with autoimmune disease or other physical manifestations of living in an over-stimulating world?

I've been thinking a lot lately about continuing on in my education.  I really do love being in school.  However, I feel paralyzed when it comes to choosing a program.  There are so many programs, and it feels like choosing one would be at the expense of a whole realm of interests.  It's also hard for me to choose a program without some kind of practical application in my mind's eye, because I want a job to be at the end of it, but I don't really know what job I want to do.  Does the job I want even exist yet?  Do I have to create my own job?  I've been reading a lot of online articles lately that basically tell me that the best option for a Highly Sensitive Person is self-employment.  That seems easier said than done.  I'd love to work for myself, but what kind of business would I be creating in the first place?  Can I get paid to think and organize?  Wouldn't that be nice...?

I've thought about continuing my education in Disability Studies, pursuing psychology, becoming a naturopathic physician or nutritionist.  I've considered doctoral programs in traditional fields like Sociology or Education, or nontraditional fields like Sex and Gender Studies.  Unfortunately, Ph.D. programs require you to submit a focused research proposal with your application, and when it comes down to it, I don't really know what I want to study.  Do I really want to conduct a major research project?  Can't I just read and think without having to worry about a dissertation?  Can't I just skip over all the politics of academia?

I know there are other people out there in the world that think and feel like I do.  I wish I knew my tribe.  I wish we could all band together and brainstorm and discover what each of us is meant to do.  I don't always mind doing the work of self-discovery, but sometimes I feel stuck and want to move forward--but I just don't know how.  I see so many of my peers that are happy and progressing in the normal socially acceptable ways.  I don't necessarily compare myself to them, but it does leave me to wonder why I can't just make decisions and when I will actually take action steps to change my life.  Will I ever really know what trajectory I'm on?  If my past is indicative of the future, my path will never be linear.  I think I'm in denial about this.

What do I want to do?  What do I really want to do?  I know I want to work in a quiet, scenic environment and have lots of time for thinking and reflection.  I want to be able to do something creative.  I want to be able to use my hands to organize--to sort and categorize.  I don't want a boss hovering over me.  I want my work to contribute to the greater good of humankind.  My MAPP Career Test results list the following as my "top motivations":

• I have a strong preference to work under the supervision of someone who is knowledgeable. I seek clear direction. I like to "learn the ropes" and develop expertise.
• I am motivated to gather, record, departmentalize, store and retrieve information.
• I am talented at spatial measurement and arrangement, artistic ability for factual image reproduction, attention to detail, awareness of machines and their function, and tolerance of routine.
• I have the ability to remember exactly what was written or said.
• I perform well in roles where I feel I can share information that makes a positive difference to others.
• I am motivated to carry out instructions for routine tasks in a familiar environment.

I wish that someone could simply read that list and say, "Aha!  I know exactly what you should do."  Somehow, I think this journey of self-discovery is ongoing.  As much as it pains me, I think that I will probably continue to try things and hate them as I whittle my way down to my true purpose.  Or, perhaps my purpose is simply to be a sojourner trying all these things, never really knowing where I am headed, but trusting that God is in control nonetheless.  Perhaps I am meant to experience as much life as possible so that I can relate better to and serve all people, and the true linearity of my trajectory is actually found in its inconsistency.  If that's the case, Lord, give me a willing heart...

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.

My Hashimoto's Diagnosis

Looking back at my Hashimoto's diagnosis, it all seems very anti-climactic.  My then-naturopath casually (perhaps flippantly) told me I had an autoimmune disease of the thyroid.  He explained to me in basic terms what this meant: my body doesn't recognize its own thyroid gland; it produces antibodies against the thyroid to destroy it.  He prescribed some herbal supplements and introduced some new dietary guidelines (cook some goitrogens, avoid others).  It all seemed and felt rather manageable, and I figured that once a diagnosis label was given, healing would be instantaneous and I could go about my life without giving much thought to 'Hashimoto'...

Fast-forward four years.  Having an autoimmune disease sucks.  Instead of progressively getting better, at times I almost wonder if I'm getting worse.  My mood was bad before, but I was in great shape and in no pain.  Now my mood is usually steady, but I'm just on the verge of crossing over into 'overweight' territory, and I have weekly, if not daily, joint pain.  I had bad (no) menstrual cycles before, but my circadian rhythm was in check and I woke without an alarm clock.  Now I menstruate each month like clockwork, but I can't fall asleep at night and struggle to get out of bed in the morning.  I floundered in the face of stressful situations (moving, jobs changes, taking care of a new pet), but continued to dream about the future.  Now I still flounder in stressful situations, but it's becoming more difficult to dream about the future.

I've invested so much time, energy, money, and research into getting well, but when you have an autoimmune disease, sometimes the quest (fight?) for elusive wellness might as well be the same as a hamster's quest to reach the end of its running wheel.  At what point does the hamster give up running, and do we follow suit when healing comes slower than we anticipated?

Four years ago, I had no understanding of autoimmune diseases.  When I was diagnosed with one, I had no grasp of how that reality would change and shape my life.  I've spent the last several years dedicating myself to understanding my condition, making changes that will improve my quality of life, and trying to find a means of surviving and thriving without feeling like my life is somehow lesser.  This is difficult to do.

I am relatively young, and to see the other young people around me doing the things young people are 'supposed' to do can be disheartening.  It's usually easier to focus on the losses that come with an autoimmune disease instead of the benefits (and now I realize I'm not sure there really are many benefits, save for forcing a person to be committed to a healthy lifestyle).

Coupled with my autoimmune struggles are the struggles I face as a Highly Sensitive Person (HSP).  Those struggles so seem to overlap, and I'm convinced that somehow the creatively intelligent and highly sensitive are more susceptible to autoimmune diseases and health ailments.  I'm not sure if there's any valid scientific data to back up that belief, but the idea certainly seems to pop up fairly frequently in online literature...

And so I live feeling somewhat stunted and stuck, afraid to dream and venture out because of how my body may respond.  Will my thyroid retliate?  Will my soul be able to deal with an overload of new sensory information?  Will I feel okay tomorrow?  If I don't feel okay, will I be able to take care of Tobin?  Damn you, Hashimoto.

I hover above a line that divides military-like vigilance and dedication to sleep schedules, meal plans, and exercise regimens from a denial-based desire to sleep whenever I want and eat whatever I want and move whenever I want.  I do yearn for physical healing, but I also want to be in control of my own life.  Ever since my diagnosis, it feels as though Hashimoto, not I, controls my life.

I can only hope and pray that this proverbial thorn in my flesh is for some greater usefulness and purpose, if not for myself then for others.  I continuously recall Cardinal Newman's meditation, and press on with the belief that He has committed to me a specific work that cannot be accomplished by any other person.  I must rest in faith that my diagnosis is part of that specific work and calling.

"God has created me to do Him some definite service; He has committed some work to me which He has not committed to another. I have my mission--I may never know it in this life, but I shall be told it in the next. I am a link in a chain, a bond of connection between persons. He has not created me for nothing. I shall do good, I shall do His work. Therefore I will trust Him. Whatever, wherever I am. I cannot be thrown away. If I am in sickness, my sickness may serve Him; in perplexity, my perplexity may serve Him; if I am in sorrow, my sorrow may serve Him. He does nothing in vain. He knows what He is about. He may take away my friends, He may throw me among strangers. He may make me feel desolate, make my spirits sink, hide my future from me--still He knows what He is about."

-Cardinal Newman