My POTS Story

An alternative title for this post could be "How a Parking Lot and Some Goats Led Me to a POTS Diagnosis."

For over a year-and-a-half, I had been dealing with a variety of vague and sometimes debilitating symptoms that I wrote off as fatigue, side effects from medications, or incorrect dosing of my thyroid medication.  During June and July of this year, I underwent a variety of tests that led to a definitive diagnosis of POTS: Postural Orthostatic Tachycardia Syndrome.  My symptoms seemed to have awakened one day and progressively gotten worse with time.  When I reflect back on this year and last, I can recall particular days where my illness was becoming more and more evident.  I am thankful that a diagnosis came quickly.  And I am thankful for my parking lot at work and some goats at a local barn for leading me in the direction of a fairly fast diagnosis.

My first memories of POTS symptoms started early last year.  In 2016, I had decided to begin taking antidepressants for episodic hormone-related depression.  I tried a handful of medications at the end of that year, and finally began the medication I am currently taking at the beginning of 2017.  With that new medication came some nausea and appetite loss.  Some mornings I would feel sick to my stomach like I was going to vomit, and there were days I actually did vomit.  Around this same time, I noticed that I was experiencing increasing pain in my hands and wrists, particularly with gripping or over-use.  I found that if I minimized time on my iPhone, it seemed to reduce the pain.

Moving towards March, I began to experience debilitating fatigue.  I have to get iron infusions periodically because I am chronically anemic and my body doesn't absorb oral iron.  I thought that perhaps my iron levels were running low again.  What I came to find out is that my body had decided to suddenly stop processing my thyroid medication--which is extremely rare and had only ever happened in one other of my endocrinologist's patients.  For a person without a thyroid, hormone replacement medication is necessary in order to live.  My blood labs reflected a total lack of thyroid functioning in my body, which explained the debilitating fatigue.  Around this same time, my morning vomiting became worse, to the point that I was in my doctor's office one morning for an appointment and they had to give me a B6 injection because I couldn't stop throwing up.

Looking back, I think that March of 2017 is probably when my autonomic nervous system broke--the beginning of my POTS.  As the year went on, I continued to face nausea and vomiting, as well as the migraines that had become the norm over the past year or so.  I only needed to use five sick days during 2017, but I did need to go to work late or leave early at times due to my symptoms.  Towards the end of the year around November, I found that it had become increasingly difficult for me to wake up in the morning.  By that time, my iron and thyroid levels were in appropriate ranges, but I found that I would be running late to work every day.  Because I already started work later that the majority of campus staff, I had to park in a lot that was about a half-mile from my department.  In the morning, I would rush to my building and arrive to my office out of breath, sweating profusely, dizzy, nauseous, and feeling like I was going to cry.  I also began to notice how difficult it was for me to walk up the stairs in the building to my office, as I experienced heavy legs and a racing heart.  I blamed anxiety and depression.

Because of my challenges arriving to work on time and needing to park so far away from my department, I decided to pursue disability-related accommodations through our HR department.  I was approved for an even later start time so that I could walk to my building without having to rush, and also an extended lunch break so that I would have enough time to walk to my car, go home for lunch, return to campus after lunch, and walk back to my building.  The walking felt extremely challenging to me, but I didn't entirely know why.  I was a mostly healthy 31-year-old woman that should be able to walk the equivalent of two laps around a track, but why did walking make me feel so ill?

The accommodations coordinator with HR encouraged me to explore a disability parking placard with a physician.  I contacted my endocrinologist and was told that they have an office policy against approving disability placards.  I avoided talking about my need with my psychiatrist because I was having a hard time finding a reason why I needed assistance with walking.  My pain and exhaustion and weakness felt so real, yet there wasn't a clear explanation for my symptoms.  They seemed to be getting worse.  In fact, I remember being on the verge of tears on Christmas morning in 2017 while my family was opening presents because I felt so unwell.

Early in 2018 marks another moment in time that I can now look back on and recognize the increasing severity of my condition.  In early January, I felt like I had come down with the flu.  I felt more run-down than I ever have in my life, and that is a significant statement for someone with multiple chronic conditions that cause debilitating fatigue.  My glands felt swollen, I felt weak, my body hurt, my cognition suffered, I struggled to participate in work meetings.  The thing was, I was still able to go to work and appear fully functional, but internally I felt like I was slowly dying.  My endocrinologist suggested I might have the flu without a fever.

My symptoms started to resolve a bit the following month, and I discovered that I had been getting cross-contaminated with gluten and possibly dairy from a local pizza place.  I assumed that the symptoms I experienced for all of January were the result of my autoimmune response to gluten and dairy, and I thought that avoiding eating out would help my symptoms to resolve.  From March through April, I used three sick days at work, but in May is when my body finally said, "Enough."

I was at work on a Wednesday, three days before my birthday, and beginning to feel like I had during January.  I felt dizzy, feverish, sore, and unable to concentrate at work.  I called my fiancé in tears because I wasn't sure I was going to be able to drive myself home.  I stayed on the phone with him until I did get home, and he rushed over to pick me up to take me to urgent care.  The doctor I met with at urgent care tested me for strep and mono, but both came back negative.  She told me that I likely had some kind of virus and that I should stay home from work until Monday.  I e-mailed my supervisor and explained that I would need to take some time off, and that I wanted to discuss modifying my student caseload because I thought work-related stress might be negatively affecting my health.

I slept for the better part of the next two days, and on Saturday, my birthday, my fiancé and I went to a local farm so that I could feed goats.  I still felt fatigued, but improving, and knew I could handle a brief excursion.  However, what I didn't anticipate was that I wouldn't be able to move my dominant wrist by the end of the afternoon.  We had gotten groceries the previous day from Costco, so I thought perhaps I had injured myself while lifting something.  However, in the days that followed my pain continued to get worse rather than better.  I began to experience numbness and tingling from my hands up to my shoulders, and there were days at work that I couldn't do anything with my hands during my last two hours in the office because I was in excruciating pain.

At this point, I had continued to put off pursuing a disability parking placard because I couldn't mentally justify my need for it, even though walking some distances had become a challenge.  I also noticed increasing pain in my legs in the evenings after a walking-heavy day.  It felt like my ankles, knees, and quads were on fire.  I would cry after work when I got home because the pain was so unbearable.  So, between my leg pain and hand pain, I finally sought to find a primary care doctor in town.  At my first appointment with the new doctor, I broke down into tears describing to her how much pain I was in from walking and how ill I felt when I arrived to my office after the half-mile trek.  Without my asking, she immediately said she would approve me for a disability parking permit.

In the following weeks, I was given an ultrasound of the veins in my legs and arms and referrals to an orthopedic surgeon and a neurologist.  The orthopedic surgeon ordered an x-ray of my hands, which showed no osteoarthritis or evidence of anything abnormal.  The neurologist performed a nerve conduction test to check for carpal tunnel, but my nerves were functioning normally.  I described my symptoms to the neurologist's physician's assistant, and when she and I and the neurologist were meeting to discuss a course of action, the physician's assistant asked me to stand up and then attached the blood pressure cuff to my arm.  She shot the doctor a knowing look and then said to me, "You have POTS."  Apparently, when I had first come into their office, my blood pressure and heart rate were in perfectly normal ranges.  As soon as I stood up, my blood pressure remained about the same but my heart rate shot up 37 beats per minute.  The neurologist said they would continue with standard POTS testing just to be certain, but that it meant at some point my autonomic nervous system broke and that there would not be a way to fix it.  He also said he suspected fibromyalgia and chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), but that further testing would be needed.  I was referred to a cardiologist and pulmonologist and ordered a variety of blood labs and an MRI of my cervical spine.

Testing with the cardiologist included an EKG, echocardiogram (heart ultrasound), Holter monitor, and tilt table.  The testing led to a definitive diagnosis of POTS.  The pulmonologist will be performing a sleep study, and he will be exploring sleep apnea, periodic limb movement disorder (PLMD), and chronic fatigue.  The MRI revealed a herniated disc in my cervical spine at the C5/C6 vertebrae, which has likely been the cause of at least some of my upper-body pain.  As for the POTS, that at least in part explains the pain in my lower extremities.  Essentially, my body has challenges with gravity, and so when I move into a sitting or standing position, blood pools in my legs and doesn't reach my brain quickly enough.  In response, my heart rate elevates significantly in order to get the blood moving as quickly as a possible.  When I am doing normal, non-strenuous activities, my heart rate might be the same as it would be for an adult of my same body composition doing vigorous aerobic exercise.  Essentially, my body is in an all-day workout.  At the end of the day, I find that my lower limbs tend to be uncomfortably hot and swollen.

As has been the case for the entirety of 2018, my symptoms seem to be progressively getting worse.  I have had three instances of near-fainting, one of which included a visit to the emergency room for IV fluids.  My body is happiest when it is laying down.  It struggles the most when I am standing for too long, walking for too long, in heat, walking upstairs, rushing, dehydrated, on an empty stomach, or not laying down periodically.  My doctor has asked me to increase my electrolyte and water consumption and wear compression garments.  I will be starting POTS medications in a few weeks.

I wanted to capture the challenges of the past year-and-a-half so I don't forget what my lowest POTS moments have felt like.  I am hopeful that with treatment there are better days to come.  But I also want this to serve as a reminder that it can be dangerous to write off symptoms.  I didn't realize what I was doing to my body until I was given a label.  Blood deprivation of the brain is serious.  I am so grateful that the physician's assistant had the wherewithal to check my standing heart rate.  My constellation of symptoms seems unrelated and random; they could have easily been the result of my pre-existing conditions and side effects from medications.  I feel validated.  My body is sick.  There are treatment options.  There is hope for the future.

My primary care doctor suspects that I may have an underlying connective tissue disorder, so more testing is on the horizon.  We also both suspect I may have mast cell activation disorder (MCAD), which would explain my frequent hives, copious food sensitivities, and general system-wide sensitivity to every environment, which has been getting progressively worse.  There are treatment options to help regulate my autoimmune disease, manage my migraines, and promote hormone balance.  I am moving towards healing.  But, that doesn't diminish the fact that these past many months have been hard and exhausting and at times I didn't think I could push forward.  I know many people wait years for accurate diagnoses.  I know I should count myself lucky to have doctors who believe me and are doing everything they can to help me.  It has taken a certain level of bravery to entrust myself to this process, and there are moments that I wish I could trade in my body for a different one.

But, the reality is that I struggle daily with chronic illness and that makes me who I am.  I do the work that I do with my students because of who I am.  Other people might be diagnosed with these illnesses and then not choose to do this work.  For me, I willingly accept these diagnoses because with them I choose to do the work that I do.  And it makes it okay to face these challenges because they are what allow me to help my students best.  And so I say to all of this, yes.  Yes.  It's okay.  This is okay.  I'm okay.  I'm okay because I can help others because of this.  I'm okay because I can better understand others because of this.  I want to help and understand.  I want to affect positive change for people.  And if that means being on the front lines of the chronic illness battle, I give my yes.  Yes, yes, yes.  I take this cup.  This is not easy, but I will let it be my truth and path and purpose.

The Imagined Life vs. Real Life

I've struggled to live in the present for probably half my life.  Sometime during high school, as childhood came to an end and I propelled towards adulthood, all that demanded my attention seemed to exist in the future: test scores, grades, college applications, a bachelor's degree, a first job.  We were trained to do everything for the sake of what would eventually come, and so I think in some ways we were conditioned not to live in the moment, but instead to always be moving forward and looking to the next thing, the bigger thing, the better thing.

This week I've experienced a tumult of emotions, which I blame in large part on a mix-up at my local pharmacy.  I was unknowingly given the wrong thyroid medication last Monday, and for most of the week I experienced severe mood swings; they caused such a marked change in my disposition that I eventually had the intuitive sense to check the imprint on my hormone tablets, and thus uncovered the error.  It was emotionally exhausting, to say the least, but in combination with beginning to read Steven Pressfield's The War of Art last weekend, I've had some time to thoughtfully consider where I am in life and the direction in which I am and/or hope to be moving.

For the past several years, living an imagined life has been my default.  I think I've encountered so much pain during this second half of my life that I cope by dwelling in the land of imagination.  INFJs are naturally future-focused as it is, so I'm likely hard-wired to use daydreams as a sort of coping mechanism.  I've constructed fantasies about where I'll live, what I'll do, what I'll have, who I'll be with.  I've created imaginary depth in relationships with people I actually know, and dreamed of pretend scenarios that some part of me hoped would come true, if only to take me away from the life that I actually know.

Clearly, using imagination as a means of escape just signals a larger issue of not wanting to deal with my reality, the here-and-now.  Perhaps my imagination has bred a sort of hope that has made the pain of disease and illness bearable.  If that's the case, I can't be too hard on myself for finding a way of moving forward in what have been the most difficult years of my life.  At the same time, living so much in fantasy not only keeps us from progressing, but prevents us from appreciating the people and circumstances that exist in a given moment in time and space.  Incidentally, focusing on an imagined future has actually prevented me from advancing in life.  Now that I think about it, I suppose that I haven't wanted to move forward, as I'm sure that in many ways I maintain a fear about what is to come.  Will there be more pain?  Disappointment?  Suffering?  Disease?  Hopes squashed?  Imagining a future has given me a sense of control over the terrifying unknown.

What is to be done about chronic disappointment?  Normally I would say that a person has too many expectations.  I thought it was fair for a person to assume s/he would experience good health, true love, and vocational fulfillment, but now I realize that any expectation is already too many.  We can't know what life will bring us, what will be our assigned portion and cup.  I have handed my security over to dreams and fantasies, when I should have been entrusting my security to God.  Isn't it like us to trust our own imaginations over the sovereignty and loving-kindness of a divine and all-good Creator?  I find myself proving over and over that I lack trust and faith in God.  Fortunately, He continues to be good and loving and all-knowing whether or not I believe Him to be so.

I often say that I wish I trusted Him more.  And I do.  But more than that, I think I wish I knew Him more.  Because if I truly knew Him, I don't think I'd be afraid of Him.  Because I don't think I'm as afraid of entrusting my future to someone else as much as I am entrusting it to God.  Because when I entrust my future to God, it feels like I am inviting more pain and disappointment and suffering and disease and squashed hopes.  I know I'm partly jaded because of misfortune, but hasn't it been the very hand of God that has allowed my life to go on like this up until now?  And isn't it up to His sovereign hand what the outcome of my life will be in the future?  I wish I could say that I honestly believe that He uses all of our life experiences for our own benefit.  But it's difficult to truly trust that the enormity of my pain and disappointment has been a blessing rather than a curse.

It would be selfish and ungrateful for me to ignore the great amount of blessings in my life, from living in a beautiful location in a beautiful home, to having a loving and supportive family; from being the dog-mom to a most handsome miniature schnauzer, to having a secure job that I enjoy enough on most days to keep me going back; from having a master's-level education, to having access to healthy food and a healthy lifestyle.  When I consider the struggles of people around the world, mine seem so small.  But, my emotions are as they are, and because so much of my pain has been internal, sometimes the evidence of external blessings is clouded.

And I've arrived at this point in my writing without any conclusions.  Except that I know I want to be more present in my life, in the here-and-now.  And I do still have hopes for the future.  And if I am going to make an effort to stop living an imagined life, that means all I can do is entrust the outcome of my life to God.  And my one true future hope is this: that He will fulfill His promise to do more in my life than I am capable of hoping for or imagining.  My hope is to truly internalize, despite whatever circumstances I encounter, His divine goodness and love for me.

Upon further contemplation, I realize that my greatest gift as of late is vision for the future.  Not that God has imparted me with specifics on where or what or who, but I feel deeply drawn (perhaps called) in a direction.  And I don't think I would be moving in this direction had it not been for the very experiences I've endured.  I have always said that my one desire in life is to help people.  Now it is my desire to see my experiences, particularly the painful ones, act as the platform for my destiny and purpose.  If I am a lump of clay in the process of being made into some useful piece of pottery, then my trials are the tools that are shaping the form I am to become.  I believe that my pain is deeply tied to God's designation for my life, and so I can see now how my disappointments will actually lead me to be a truer, more authentic version of myself--the divinely-ordained version.  Ultimately, I cling to the belief that my pain will be the most profound source of my abiding joy.

Disheveled: Becoming “Post-Evangelical”

The main title for this post came to me as I sat in my bedroom in momentary silence, reflecting on the current state of my life. It was the one word that popped into my head as I stared at my messy closet and the shelved books I had just sorted through. My collection of books has always acted as a sort of barometer for where I’m at and what I’m interested in. In the past, the shelves were brimming with titles related to theology, Ethnic Studies, Christian romance, nutrition, classics. Over the years, I whittled down my number of books in hopes of abating a semi-addiction to buying reading material from Amazon. The books I knew I wouldn’t read, I parted with, and I refused to allow myself to purchase anything new until after the books on my shelves were read.

Since that first weeding through the books, my collection has seemed to shrink rather than grow. Or, perhaps the contents--the themes and topics--have merely changed so vastly that it seems shrunken, when in fact it’s not the number of books that’s been depleted but my sense of faith.

As I was examining the spines of books still in my possession, I came upon my university yearbook. The summer before I left for college, freshmen had the opportunity to send in copies of their senior photos along with a selection of two interests from a form that listed pre-determined activities and fields. I still remember when I received this notice and decided to participate. There was no option for Jesus or faith, and so I chose the write-in option at the bottom and inscribed “Christianity” on the blank line. At that time, it was very important to me that people knew what I was about. In my mind, knowing that I was a Christian was more important for people than knowing my name, or major, or how I spent my weekends (although, I could have come up with a way to link all of those things back to the fact that I’m a Christian). Even during my first phone call with the dorm roommate I was paired with, I openly talked about my faith and the depth of its importance to me.

Along with the yearbook, I found some old books on practical spirituality that I no longer want to keep. They seem to be the last bit of proof that I was once evangelical. Now, I make that claim with some hesitation, as I don’t know that I will ever be entirely “post-evangelical.” My upbringing in the church and experiences doing ministry around the world have created deep roots that I don’t know will ever really die off or be able to be pulled out. But I know that my faith is not the same as it once was; it seems to have become disheveled.

I was contemplating my feelings towards the church, and the only thoughts I can ever really come up with are that I have been deeply wounded. But as I sat and considered those words, it occurred to me that God and the church are not one in the same. God has not wounded me, but the church, and more specifically Christians in the church, have wounded me. And it’s not even necessarily specific people or churches or occurrences, but it is in large part the ideas and ideals I was imparted with so that I feel that I was in some ways recklessly (though the intention was not reckless) led to believe things that actually did more harm than good. Rachel Held Evans articulated my own sentiments beautifully:

“When you grow up believing that your religious worldview contains the key to absolute truth and provides an answer to every question, you never really get over the disappointment of learning that it doesn't...Like it or not, our religious traditions help forge our identities. The great challenge...is to hold every piece of my faith experience in love, even the broken bits, even the parts that still cut my hands and make them bleed. We are all post-something. We are all caught between who we once were and who we will be, the ghosts of past certainties gripping at our ankles. There’s no just getting over it. There’s no easy moving on.”

I haven’t regularly attended church in over two years, mostly because I don’t really know where I belong, but also because I needed space. My life was so hyper-focused for so many years on my participation in church and evangelical activities that I lost my sense of self. I would use the justification that we are to sacrifice ourselves for the cause of the cross and a crucified Savior. However, I think that my lifestyle was more representative of a codependent relationship and sense of fear than anything else. I was terrified of somehow losing my faith that my entire life became based on being engaged and a leader in as many Christian organizations and opportunities as I could possibly be involved with. In some ways, I admire that kind of dedication and commitment. At the same time, I had no idea who I was.

As my 20s quickly come to a close, I’ve been reflecting a lot lately on the amount of growth and change I’ve experienced during the past decade. I feel that every year since I first left for college has been one of pivotal self-discovery, particularly my year in China and those following. I can thank my time in college for providing me with the tools to think critically. It all started with ideas related to social justice. The frameworks for thinking that I learned in my Ethnic Studies classes began to shape how I viewed other fields, including Christianity. As justice for the oppressed grew in importance to me, I began to see my political ideals aligning with Liberalism. And because I had grown up believing that Christians were automatically Republicans, I had to begin to reconsider my faith and how I could possibly reconcile belief in Jesus and His message with Democratic ideologies.

I don’t consider myself to be a Democrat, but I merely point out this example to mark the first moment of the dishevelment of my faith. It was that one small reconsideration that has led me to become more critical in my thinking about Christianity, in relation to people groups, sexuality, church attendance, relationships, purpose, and beyond. I know that there are many circles and branches of Christianity throughout the world, but it’s difficult not to feel like you’re amidst a divorce from evangelicalism and looking to remarry a new Christianity. And perhaps that’s why I’ve taken a break from church for so long; I’ve been mourning the loss of a Christianity that was as formative as it was painful for me.

As I lay the on carpet in my bedroom and stared at my ceiling, all I could think about was the fact that God is with me and will continue to go with me--no matter the state of my heart or circumstances. And I know I will never fully understand Him in this life, and I know that I will often feel disappointed by the church and by Christians; but I also know that He is not done with me yet. He has appointed me my portion and my cup, and as much as I’ve faced disappointments and trials and pain, I truly believe that I am part of a much larger purpose and story. I just hope that those disappointments and those trials and that pain shape me to be more compassionate and Christ-like in my life. And even when I don’t know what label to use when it comes to talking about my faith, I pray my eyes will ever be fixed on Jesus and all that He was and all that He stands for and spoke about. God is bigger than our interpretations and ideas and labels and debates and churches.

Life is Passing Me By

I woke up last night to a vomiting dog, and then found myself unable to fall back asleep.  I was awake in the first hours of the day, Googling things like "life is passing me by."  I almost laughed aloud when the first hit that popped up said, "When you're unhappy, you tend to be thinking a lot about life. When your job sucks, you're not engaged. You're listless and googling sh*t, and in general not enjoying what's going on."  Nailed it.

After reading some articles on Milk the Pigeon, I tossed around my bed in the dark, attempting to sleep, but distracted by the realization of how scared I am.  I am scared by how uninterested I am in my own life.  Aside from loving my dog, I am not doing anything I enjoy or am excited about or that gives me a sense of purpose.  I'm unfulfilled by my job, but I need it to pay the bills.  It consumes most of my time, and I have nothing to show for it.  I have no time to devote to creativity or outside interests because I am so exhausted on my days off that I end up sleeping through them.

It's terrifying to realize that you really, truly hate everything about your life, and that you feel powerless to change anything.  I feel limited by my own health problems and medical conditions, and so I don't allow myself to dream too big because I don't know how far I can realistically go.  I do job searches, but they generally feel futile or meaningless; I am picking a job to have a job, and none of them get me excited or arouse my interests or passions.  I would love to work for myself (maybe; I say this, but I'm not sure how I would feel if I was actually doing it), but I don't know where or how to start.  I need money for my monthly expenses--dog, supplements, visits to doctors, insurance, student loans, food, car, prescriptions, life--and it seems impossible to be able to start anything entrepreneurial before stopping my current job.

But, even more scary than realizing how uninterested I am in my life is realizing how long it's been since I've been excited about anything.  I really think the last time I felt content in my circumstances was about six years ago, when I was still in college.  I would literally have moments when I thought to myself how perfect my life was at the time.  I was studying a field I was in love with, which fed into my Clifton strength of intellection.  I was working for my department which gave me a sense of deeper involvement in our progressive major and closeness to my professors.  I was exercising daily and eating well, and I was keeping off the weight that I had lost a few years before then.  I was discipling a younger student through weekly Bible studies and mentoring.  I was working on an oral history project with the local historical society.  My life was full, but everything I was doing felt meaningful and I had a lot of freedom and time to myself.  I was so happy with my life back then that it drove me to apply to Ph.D. programs, just so I could maintain that same life forever.  But, when the reality hit that I would be moving cross-country to immerse myself in academia, my heart seemed to shrink and I didn't want that life.  I basically never wanted to leave the life I was living at my university, and I eventually realized that getting a doctorate at an East Coast school would not simply be a continuation of my college experience.  It wasn't so much the academia I was interested in as it was the academic lifestyle.

I wasn't terribly unhappy during the few years following graduation.  I worked in a gluten-free market, where I got to talk to people about healthy eating and organize things all day.  I experienced a lot of autonomy and time to contemplate, and so I was content.  I continued to maintain an active lifestyle and was involved in a local church.  I even had a few friends that were still in town and who I saw with regularity.  However, life began to shift in 2011.  It started with debilitating joint pain that sent me to physical therapy.  A rheumatologist couldn't figure it out.  Physical therapists couldn't figure it out.  My endocrinologist eventually figured out that it was a sensitivity to almonds, which I ate constantly throughout the day in every form you can imagine.  I was taking two art classes at the local community college, but outside of that I was mostly watching a lot of T.V.  I did start interning that summer as a photojournalist for three local papers, but at the end of summer I broke my leg, and so once again my life became all about physical therapy.

In January of the following year, I began working for the local school district and awaited grad school acceptances.  Once I decided to pursue a master's in Women's Studies, I immediately began to have misgivings about the program and whether I really wanted to study that field.  I knew I wouldn't be able to recreate college, and I think that's what I was after.  Additionally, I didn't feel like I fit in with the program or its students, and so I began to move in the direction of special education.  I wasn't necessarily something I felt passionate about, but it gave me a sense of purpose.

I numbly floated through my interdisciplinary graduate program, eventually realizing that I didn't really want to teach special ed.  I began to pursue school counseling, until I realized that I didn't want to do that either.  I desperately grasped for a sense of purpose, having somewhere lost my sense of passion or even any sense of what my passions might be.  I finished graduate school, and was essentially forced into the only job that wanted me, and shortly after that into the only other job that wanted me.  And then I eventually found myself in survival mode, no longer even thinking about purpose or passion or my idyllic time in college.  I had to turn off any sense of wants or dreams so that I could cope with the reality and limitations of illness, and get through the day-to-day grind of a meaningless job without becoming suicidal.

I try to get through five days of work so I can get to my two days of sleep.  I think more about paying my bills than finding purpose.  I think about my limitations more than I do my potential.  I don't really know what I want anymore, except I know I don't want this.  And the things I know that I do want--a cottage by the sea and a vegetable garden and a flock of schnauzers--are unrealistic without a job to finance them.  And so I dream of this vague life I want, but don't know how to get there.  And even though I feel stuck, I am terrified of getting unstuck because I don't want to get sick.  And illness seems to follow me wherever I go.

It seems silly for a person to feel trapped in his or her own life.  We think, "Go do something about it!"  But the logistics of actually doing something about it are profoundly more complex, generally because they involve money.  Do people with a lot of money ever feel stuck?  Maybe on an emotional level, but at least they have the means to physically remove themselves from lives they hate.  Or, perhaps I'm wrong.  I know money doesn't solve problems, but sometimes I think it might in some small way solve some of mine.

The article I read last night told me that I should stop thinking so much and just start doing things.  Anything.  Create things.  Learn things.  Keep myself busy.  And I think back to my time in college and how busy I was, and perhaps the key to my happiness was that I had so much going on and I was contributing to the world in a way that lined up with my values.  And perhaps the longer I've been out of college and the more sick I've become, the less I've been able to do.  And as I did less, I began to think more.  Exercise and church and seeing other people were no longer important factors in my life.  I blame my lack of involvement in anything on fatigue.  But is it that?  I don't even know anymore.

It seems there are many things I no longer know.  I have accepted this as my reality, but I don't want to settle for this.  This can't be it.  I won't let this be it.

"For most of us, we hit that 'stuck/fu**ed' spot right when we get the first secure job. It pays us good enough so that we don’t worry, we get a good enough apartment, then a good enough spouse, then a good enough marriage. And then life is 'Eh, good enough' for the rest of our lives. F**k good enough."

-Alexander Heyne

I know that my circumstances need to change.  I just need to figure out what I can realistically do to change them.  Please help me, God.

I am a survivor.

That moment when you remember how your professors radically changed your life...

That moment when you're reminded of the vision you held for your future...

That moment when you realize you're a survivor.

Today is the 16-week anniversary of my total thyroidectomy, and thus my 112th day of being cancer-free.  These anniversaries are largely non-monumentous.  Every few weeks, I take a photo of my scar and post it on Facebook with a caption about which anniversary I've reached.  The photos always garner "likes" and comments, and they're a small and simple way for me to celebrate.  I have also been turning these photos into "covers" for my Facebook profile, after I add to them the statement "I am a survivor."

The fact that I'm a survivor has been a conscious reality since the day I was diagnosed with cancer.  But I have given the title (survivor) little meaningful thought in the past few weeks.  I don't know that I really considered what the word meant beyond the fact that it made a statement about my having battled cancer.  However, something in me shifted tonight as I read those words.

I've been struggling a lot lately with trying to figure out the future.  I realize that working in retail is unsatisfying and impractical for the long-haul.  I want to contribute something to the greater good of mankind--research, teaching, love.  I want to make a difference in the world.  As an INFJ, my heartstrings are always pulled in so many directions.  I read an article recently that said that career options for INFJs are always simultaneously exciting and heartbreaking.  As idealists, the world of possibility is thrilling and produces in us all sorts of fantasies about the future.  However, all of those possibilities are also crippling, because we come to realize that to pursue one pathway is to sacrifice another.  We can't do everything.  And so at once none of the options are appealing any longer because we can't do all of them in one self-designed career (wouldn't that be nice?).  It's frustrating.

So, I've been dealing with all of that INFJ confusion--the appeal and drawbacks of every job out there.  Add on top of this the fact that INFJs often feel misunderstood (and often are misunderstood) when sharing their intuitive insights, so people write off this deep analysis of future options as crazed neuroticism.  The INFJ then packs up all this thought and places it back into the very personal introverted intuitive luggage, and once again starts mulling over the more "conventional" options, because those aren't considered "crazy."

And then I get to throw an autoimmune disease, endocrine disease, MTHFR gene mutation, and histamine intolerance into the mix of my endless thought processes, which does result in a certain amount of crazy as I try to create a game-plan for my future.

The past few weeks I've been revisiting the idea of pursuing a Ph.D., as I think it may be one of the only career paths that affords me the level of freedom and time for contemplation that I'm seeking.  The struggle I have been facing with this idea is what kind of research agenda I would propose in my personal statement.  I want to write something honest and compelling, but to be honest would be to say that I really don't know what I want to do doctoral level research on.  Earlier tonight I read through old personal statements and academic essays, and then found a letter I wrote to my professors when I graduated from Cal Poly.  The letter mostly talks about how their mentorship and guidance is what made me want to become a professor in the first place (over eight years ago), and how I wanted to inspire my future students in the same ways my teachers inspired me.

When I finished reading the letter and closed it on my desktop, the first thing I saw was the cover photo I had posted on my Facebook profile earlier today.  It felt like the "I am a survivor" statement was boring a hole into my heart.  For the first time, those words made me want to cry.  They no longer just meant that I battled cancer, but that who I am in my very essence is a culmination of every event that has ever happened to me, both in the past and moving into the future.  I could easily say "I have hope" or "I have a future," and they would mean the same thing as telling people that I'm a survivor.

Writing this now brings to mind the verse that was a favorite for years and years--the one that all my friends knew I loved, and that caused them to give me knowing glances whenever we read or heard it.  It was my signature verse, for reasons that I won't outline in this post.  But, suffice it to say, the words still hold profound meaning in my heart, and are something I think I need a reminder of today.

Jeremiah 29:11

"'For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future'" (New International Version).

or

"I know the plans I have in mind for you, declares the Lord; they are plans for peace, not disaster, to give you a future filled with hope" (Common English Bible).

I take the GRE in one week.  My prayer is that during the test, these words will be my companion:

I am a survivor.

I have hope.

I have a future.

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...

I Am Valuable, My Life is Worth Living

I don't love myself.

It's a realization I've made during the past weeks, or perhaps months or even years.  I don't love myself or find value in myself, and so I haven't been taking care of myself.

I'm not usually the biggest fan of Joyce Meyer, but over the weekend I came upon some words she wrote that spoke to my soul.  We can't love ourselves until we are healed emotionally, and we can't heal emotionally until we accept God's profound and unconditional love.

The depression demon usually visits me a handful of times throughout the month, generally in relation to a combination between where I am in my hormonal cycle and how I've been eating.  Tonight I was trying on some outfits, and all I could think about is how fat I am.  I looked in the mirror at how big (objectively speaking) I've gotten in so many places, and it made me feel totally unattractive and undesirable.  Coupled with those feelings is my already low self-esteem resulting from knowledge of my diseases, and the belief that I'm abnormal and tainted and not someone who anyone would want to marry; I cry in desperation, feeling like an alien creature stuck in a life she doesn't want, but incapable of having anything more or different.

In reality, I'm only 20 pounds heavier than my "normal," a result of hormone imbalances, cancer, and a puttered-out thyroid.  However, I think much of my self-worth hinged on my thinness, and now that it's gone (objectively speaking), I don't feel good about myself.  Before that, I found value in academic performance and achievement.  Before that, the perceived strength and quality of my faith in God.  I'm not in school and I've moved away from my legalistic Christianity and into something that feels less certain and secure (the loss of legalism is a good thing, the loss of security is not such a good thing).  Without my previous appearance, or academic accolades, or the recognition of a mature faith journey, I no longer have anywhere to find value.  Except the value that God has inherently created me with.

So much of my life has been about performing and doing and achieving that I missed out on many years of just be-ing.  When I was a missionary in China, for the first time in my life I was surrounded by a team of people who spent time doing things they enjoyed, simply for pleasure.  That concept was so foreign to me.  I didn't even know what I really liked doing.  I remember starting to spend afternoons outside with my camera, and then I bought some paint supplies at a bookstore and painted some pictures for the first time ever, just because I could.  I bought fiction books.  I downloaded music and learned about different singers and bands.  I began to exercise and cook healthy foods.  I became less focused on the appearance of my life to other people, and made choices that brought joy to my heart.

I'm not sure what's happened in the past four years, except I think that somehow with my medical diagnoses I began to give up on my life a little bit.  I remember when I was first told I had Hashimoto's Thyroiditis and probably PCOS, my immediate thought was, "Well, I guess I'm not getting married."  Somehow a disease made me abnormal, and that abnormality made me unlovable, and to be unlovable meant I had no value.  I think that I've been caught in the web of this pattern of thinking since that day in the beginning of 2010.  I am abnormal, so I have no value.

It's difficult to come to terms with the physical ailments you've been born with--to know that God created you with these proverbial thorns in your flesh.  I know that we all have our weaknesses and idiosyncrasies and problems, but somehow because I now see that I am not and can never be perfect, I have lost all sense of self-worth.  Perfectionism is such a painful and exhausting addiction.

But then I think about how much God has created me to be able to offer to the world.  My emotional and spiritual and physical struggles are but fodder for the possibility of ministering to others--of feeding God's sheep.  My suffering makes me more real and authentic and genuine (I hope), so that I can be a source of comfort and respite and truth to the people around me.  And He has given me gifts, as a human be-ing, that are unique only to me.  And not only gifts, but a calling to which no other person has been called.

I think about so many people He has placed in my life, people who love and value and appreciate me for who I am and nothing I've done.  People who have loved me through the ups and downs of my autoimmune disease, the good days when I've been kind and grateful and warm, and the bad days when I've been depressed and cranky and cold.  People who have loved me through my cancer, showering on me their support by way of an outpouring of financials gifts and notes of encouragement.  People who have continued to seek out relationships with me, even when that seeking out is very much one-sided.  All of that love and support and seeking speaks volumes about the love of God, and if the people in my life have valued me in this way, how much more does my Abba Father lavish His value and love and pride on this little creature He has created--me?

Earlier this year, I began to see a counselor to help me with PTSD from a near-fatal car accident I was in two years ago.  During our first session, she gave me a list of positive self-affirmations and negative self-talk.  We discussed some of the phrases from the list that I want to come to believe to be true.  I no longer see the counselor, but I have since begun writing these positive phrases in my journal.  I think there is a lot of power in claiming these affirmations in my own writing in my own personal journal.  I also began to rewrite some of the affirmations as truths about God (i.e., God is in control; God can be trusted).

I haven't been very consistent about going to the gym since my cancer surgery, but tonight, amidst a mini emotional meltdown, I knew I just needed to get out of the house and focus my mind on something other than my own unhappiness.  As my endorphins kicked in and I actually began to feel the cloud of depression lifting, I began to say to myself, over and over:

My life is worth living.

And then I added to that:

I am valuable.

And so I pumped those elliptical pedals and chanted to myself, "I am valuable.  My life is worth living.  I am valuable.  My life is worth living."

I have begun to make a list of things I want to commit to doing every day and/or every week in order to nourish my body and soul.  If I feel trapped in my life and want things to go differently, I am the one that needs to take steps to change what is changeable.  I am going to start taking care of myself because I am valuable, and my life is worth living.

He made me valuable.  He gave me a life worth living.

God, grant me the serenity to accept the things I cannot change,

The courage to change the things I can,

And the wisdom to know the difference.

Sanctified Artistically and Creatively

At some point, I will conclude my account of the day my thyroid was removed. I've felt guilty for not spending any time writing as of late--actually, I've felt guilty for not wanting to want to write. To be honest, going back to work about a week ago was completely exhausting for me. Though my mood is mostly good and I can keep up with my co-workers and complete typical day-to-day tasks, there's not much of an energy surplus when I get home to devote to creative endeavors or even exercising. The gym is something I typically do on a daily basis, but right now my body wants rest, so I'm giving it rest. I think my brain also wants rest, so I'm giving it the same treatment as my other parts.

I've been mulling over some thoughts during the past few weeks, and especially the past 36ish hours. Being surrounded by artists and fine art supplies every day certainly forces me to confront the reality that I'm not devoting any time to my own art. My camera sits in its bag, unused. My paints sit in my ArtBin, unopened. My collage cutouts sit in my desk drawer, unglued. I know that I need to extend some grace to myself for not accomplishing any projects, given that the past couple of months have been so focused on my cancer. At the same time, I can't blame my cancer for the months before my diagnosis in which I still wasn't cultivating my seeds of creativity. I know that I've been battling ill-health for some time now, but I also know that I have a good many excuses, most of them stemming from my perfectionism, that keep me from acting on this yearning to create.

As a child, my desire was to become an artist. That was my career plan for probably the first eleven years of my life. I had student artwork displayed in my community's art gallery. I read all I could about Vincent Van Gogh (and even dressed up like him for a research report in fifth grade, bandage-wrapped ear and all). I came home from school and immediately turned on the television to tune into "It's Curtoon Time!" My mom bought me art and craft kits for birthdays and Christmases. I spent my weekends designing outfits with my Barbie fashion design kit.

I don't exactly remember when, but sometime after fifth grade I stopped wanting to be an artist. There was a brief period of time where I wanted to be a veterinarian (because of my new-found interest in reptiles, via my lizard, Sam). I wanted to be an actress (because of praise after performances in classroom skits and winning a play-writing contest at school). I wanted to be a special education teacher (because I was a "big buddy" to a kindergartener with special needs). As I got older, my desire was less and less to create, and more and more to help others, particularly marginalized people groups. I became more serious about my faith in sixth grade, and shortly after that I decided that I wanted to be a missionary. I think that this desire resulted in part from my drive to help others, but also from the belief that it was what would bring me into greatest intimacy with God. What I can now say in hindsight, after working in full-time Christian ministry for a year, is that I am neither called nor gifted to do overseas missions.

For the past few years, I've bounced around in terms of career ideas and pursuits. My sister told me that I change my mind a lot, but my coworker suggested that I just haven't found my place yet. Amidst my missions work and brief divinity school stints and plans to get a Ph.D. and jobs working in special education, deep down I have wanted to be an artist. I don't know exactly what that means, but I think that God has guided me to the place where I can discover the meaning behind that desire.

Several years ago, I sought prayer from a spiritual leader at my church. During one of our meetings together, without having any prior knowledge of my childhood desire to become an artist, the leader told me that I was created to be an artist. She told me that I had been sanctified (set apart) artistically and creatively, and while we were praying she said that God gave her visions of beautiful pieces of art pouring out of me. I don't remember the exact descriptions of her visions, but I do remember feeling equal parts surprised and skeptical. In the days following our meeting, I went to the gym and chose an elliptical machine, and then realized some type of artist magazine was left on it. This was somewhat strange because I had been going to that gym off and on for at least six years at that point, and had only ever seen celebrity gossip magazines. But what made it even more strange was that there was a post-it note inside the magazine with the words "your article," and it was flagging a piece of writing that discussed becoming an artist(!).

Last night, I had the opportunity to attend a lecture and demonstration at work that featured a local oil painter. Interestingly, several years ago when I was actively involved in college ministry, I somehow obtained a bookmark with a picture of the painting "The Last Supper with Twelve Tribes." I never paid much attention to the artist's name, but I remember always having a fondness for the work. Well, imagine my surprise when I started my job a few months ago and learned that the man who made that painting is a regular customer at our store. He is the one who spoke at the work event last night, and his words reminded me that I have a gift and talent that need to be nurtured. Because of my perfectionism, I'm prone to give up on creative endeavors because right now I'm not at the level I want to be at. However, hearing about the effort this man invested in practicing and learning and becoming a good artist made me see that I need to actually set aside time and space to practice art--without placing expectations on myself. With all the jobs I've tried and career paths I've pursued, I keep coming back to this small voice of desire deep down in my heart, telling me that I need to be an artist, and it's time that I listen.

As I said before, I don't know what kind of art I want to create or even what tools or mediums I will use. All I know is that somehow as this journey slowly unfolds, it seems more and more connected and logical. Despite a resting brain and potentially muddled writing, I am posting this as: 1.) accountability to pursue artistic endeavors; 2.) a reminder that last night God stirred something in my heart.

Side note: I would like to draw attention to my insightfulness as a first grader.  Jon Holland, a psychologist, came up with the "Holland Occupational Themes"--six primary career strengths that are assigned based on personality.  My top two Holland Codes are artistic and conventional, essentially creating and organizing.  On the Holland Codes hexagon, my two strengths are directly opposite one another, meaning that the combination of those two strengths is possible, but rare.  At the age of seven, I was self-aware enough to know about my desires to create and organize, thus my conclusion that I would work in retail part-time (a conventional job), and as an artist the rest of the time (an artistic job).

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.

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.

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.