What I Learned from my Leap of Faith

I ran, and I ran, and I ran, until I could run no more. I was at the edge of a cliff, and the only way forward was down. The waves roared below but I had no choice. Down, down, down I went. I felt the ocean breeze spray my face. Yet I did not hit the rocks. That’s when I realized, I could fly!


In fantasy terms, that largely summarizes the last year or so of my life. After struggling with a bad fibromyalgia flare all of my last semester at graduate school, I was at the end of my tether. I realized I needed to take a break before continuing on to any new work in order to prevent a complete collapse.

It was a tough decision for me at the time. It had been nearly a decade since I was on any vacation longer than a few weeks. I was concerned that while my body might feel better during a period of sustained rest, my brain would feel “wasted” without any brainy-work to do. At the same time, I was facing a lot of judgement from my professors who were not privy to my physical problems, and were convinced the break would ruin any prospects of a career. I was also worried that without something substantial to occupy my mind, I may be too focused on the pain and feel the worse for it.

Not knowing how I was going to react to an indefinite period of unemployment, it was largely taking a leap of faith. But as it turned out, most of my worries never came to pass. And in the process, I even learned a thing or two about myself!

So here are five things I learned about myself when I stepped off a ledge into the dreaded unknown:

1. I can actually enjoy taking a complete break from work for a while!

It certainly took a while — at first I was just very stressed about not having a career direction — but then slowly, I was able to embrace the lack of all absolute obligations, deadlines and requirements! Instead of feeling wasted, as I feared I would, I felt more open. Once I got comfortable with not having anything particular to do, I felt my brain slowly creep out of its “lefty” mode and start spreading its wings! I felt more creative and free, and thoughts and ideas flowed in and out of my mind more easily. I loved the peace and quiet, the serenity of the guilt-free time to think and write. Now that all of my energy wasn’t spent working, I had more energy for other things (like, as silly as this might sound, washing my hair!).

2. It is impossible for me to be bored.

I know when I first floated the idea of the break, many well-meaning people thought I might get bored. I wondered about it too. But as it turns out, my mind is too full of things to ever be bored! I always have something going on in there — perhaps a new idea for a painting, or a blog post, or even a future book! Most of the time my mind is full of reflective, meditative thoughts about both the world inside of me and that which surrounds me. My home is practically a library, so I always have a stack of books I am working through next to my bed. My capacity for imagination may be endless when I choose to engage in it. And I am surrounded by both instant access to knowledge (thanks to the internet) and a mind that voraciously craves new and varied information about a diverse set of topics. So, as I learned, it is impossible for me to get bored as I am engaged in too many activities at any one time, even if I don’t move a limb!

3. I can get too inward-focused for my own good.

Truth be told, given a choice of living in the “outer” world and the “inner” world, I would choose the “inner” one any day. And as I got all comfortable living in that “inner” world last few months, I realized that is also a problem. As someone who has always suffered from social anxiety, it has taken me years of practice at being around people to learn how to function properly in the world. It is never comfortable, but it is an important life skill. Yet now, I seem to be using fibromyalgia as an excuse to get more and more away from the outside world and turn back inwards. Without any definite obligations to attend to, I feel especially free now to just give in to the regular ups and downs of the condition, and just stay in and recoil into my own world even more. This can begin to feel too comfortable after a while, something which, ironically enough, makes me quite uncomfortable! So I learned that I need things that push me against my instincts and challenge me, so life stays fresh, interesting, and even a little challenging all the time!

(Besides, neck strain from too much reading is contributing to some killer headaches last couple of weeks, so it is clearly time I got out and did something else!)

4. I am more OK with leaping into the unknown than I had thought I was!

When I was first offered my current job with the state government, I was not sure about it at all. I was afraid it will take me too far away from biology proper. But ultimately, after a lot of deliberation on other potential options, I decided to take the plunge. One of the things that appealed to me about the job was that I knew nothing of the specifics of what I was about to do! That was a good thing, because I did not know enough to know what to be stressed about! And I realized that I love this feeling of the “beginner’s mind” that can only be accessed when exploring the complete unknown. This is how I felt when I first walked into the research lab as an undergraduate that I eventually graduated with a Ph.D. from! I knew nothing about doing science, so I was eager to learn all I could. With an open mind, I was able to think about what I was learning without the restrictions that come with expertise. It was a feeling of freedom, of possibilities, of growth, and of accumulating life experiences — all of which I dearly cherish. Now I feel ready to inhabit the “beginner’s mind” once more. I have no real clue where this unexpected path will take me in the future, but I am in for the ride with an open mind.

5. I was ready for a major change.

After spending several years working as a bench biologist in academia, I will be a data scientist for a government agency. That is about as different as different can get, and I remain surprised the opportunity even came by me! But, I feel ready for it. I feel I am too young to cage myself into a narrow realm of possibilities. I had stayed long enough in academia to recognize the good, the bad and the ugly in it. It was time for me to explore a different setting now, a different field. My interests are too widespread to be constrained into the narrow niche that a standard academic career demands. So if I am going to play outside of the academic playbook, I would have to create my own paths into a non-standard career. I feel like this job out in left field is the first step in that direction.


For a fiercely analytical person, who likes to weigh the pros and cons of everything, taking a leap of faith can be very difficult. This was especially true of me in the case of my break from employment, because it conventionally bodes ill so early in one’s career. But at the time I had few other choices, and luckily, everything turned out just fine in the end! Plus I really appreciated having the time to exclusively manage the nasty flares that have gripped me most of this year. So I wanted to write this post not just as a future reminder to myself to not be so afraid of doing the crazy “unthinkable” thing, but also as an encouragement to anyone else who may be in a similar spot as I was back then.

If you’re feeling iffy about the jump but it’s edge of your cliff, close your eyes, and trust your wings.

Love,

Fibronacci

The Glow of a New Hope: Redirecting Career Possibilities as a Scientist with Fibromyalgia

I love painting sunsets.

Aside from the fact that they are simply gorgeous, the glowing light also signifies a lot of hope for me. First, the warm colors in the light of the setting sun has a psychologically uplifting effect. And second, on a more philosophical level, sunsets signify a state of transition, where you are standing at the threshold between the old and the new. A state of liminality. The very nature of the sunset marks the end of an old, and therefore by extension, the beginning of something new! It’s a beautiful close to what once was, and invites you to think of what the future will bring.

Featured image: Twilight’s Last Glow (oil on 6X6 canvas; available)

It was about 7 years ago that I first got into academic research as a career. The field of epigenetics fascinated me: it is the study of the various modifications on our genetic material that fine-tune how the genes actually behave. If you think of the DNA code as just the lyrics to a song, then the epigenetic modifications provide the tune, so you can actually sing the song. I was enthused enough to learn more about the subject so that I joined a research lab that studies the same. Over the next 7 years in that lab, I first completed an undergraduate honors thesis, and then a Ph.D. dissertation.

Epigenetics
A conductor wouldn’t know how to direct the opera with just the libretto (the genes), s/he would also need the accompanying musical notation (the epigenetic marks).

All that time I was on a single-lane, yellow brick road to become a tenured academic professor in Oz. I worked hard since the junior year of undergrad, often working long hours without pay, paying all the seemingly appropriate dues for a supposedly cushy future. But I was devoted to the deity called “science.” I knew the sacrifices I would have to make to reach my goal, and I was ready for it. At the time I felt like that was really what I wanted of my life. And besides, it wouldn’t matter if I did not – I was conditioned to think that that was the only road possible for me after a Ph.D.

Yellow brick road
The yellow brick road to the ivory (emerald?) tower!

So then when I was struck with fibromyalgia, about halfway through graduate school, perhaps you can imagine my state of mind when I felt my dreams had just gone up in smoke. I felt I was now trapped into this very narrow specialized field, educated beyond most jobs, with a medical roadblock in the only credible path to a bright future. In addition, it certainly did not help that my advisor, who had high hopes for me, now thought that I was a lost cause. He had no reasonable advice for me other than to “just deal with it.”

I have now spent upwards of 2 years trying to get out of the dark mindset that my professional life is ruined because I am no longer able to spend 60-80 hours per week working any ol’ time of the day. It has taken a lot of career research, reading other peoples’ experiences of life after academia, and talking to people who were more supportive of my seeking “alternative” routes, to really figure out new possible directions for myself. More than anything else, it has required me to shake off the chains I had put around my own expectations of my future. I had to do some serious soul-searching about what I truly enjoyed about my job, in order to figure out how I could continue engaging in that, in a way that is not so detrimental to my health.

recycled-art
Reimagine the possibilities!

The result has been a liberating feeling that I have a lot more paths to choose from than what I was initially led to believe. I just spent the last year or so considering traditional postdoctoral research appointments, along with “non-traditional” post-Ph.D. options like teaching, as well as jobs in science publishing, government, and clinical laboratories. Some of these are more directly connected with the topic of my graduate training (molecular genetics/epigenetics) than others, but I was not shy about looking into related but different fields like human genetics, environmental health, public health and policy, and forensic science. I even considered options that would require further schooling, such as genetic counseling and molecular epidemiology.

Not all has been bright and sparkly, though, as I sought out new potential directions for myself. I learned that it can be incredibly hard to budge even a tiny bit from your field of specialization, especially after a doctorate. At the same time, I also received enough positive responses to have faith that difficult though it may be, it is not totally impossible! However, it does require you to be honest with yourself about your priorities (both professionally and personally), and keep realistic expectations of your job search. It is possible to carve out a new fork in the road for yourself, but it takes time, perseverance, and a healthy dose of luck.

Despite it not being all glowy, I nonetheless feel like this period of transition after graduate school is like a sunset. It is a time to reminisce about the past as one chapter in my life comes to a close, and to contemplate what new experiences the next one will bring. Nobody knows what tomorrow holds; but for now, as I stand on this threshold, the possibilities are endless!

Love,

Fibronacci

 

Each painting has a story, one that I strive to tell here. Since many of them have to do with my journey with fibromyalgia, 20% of all yearly sales income from my paintings will go to the American Fibromyalgia Syndrome Association (AFSA), who fund research into this poorly understood condition. If the paintings and/or the cause touch your heart, as they do mine, please feel free to contact me through my Facebook page for more information. Thank you for accompanying me on this journey!

A Window Into Happiness

I read a beautiful article a few days ago on Crafts, Chronic Illness and Adulting about how happiness is a state of being, and it is our choice to make every day (as much as we can) to seek that happiness within ourselves. I have ruminated much about that elusive state of happiness before, and couldn’t agree more with that attitude.

I feel like happiness is a flame that is burning within us. Sometimes the flame dwindles, gets buried, becomes hard to reach, as daily frustrations take over our minds. It can be especially hard to deal with the everyday when one is also fighting a chronic illness. But in a moment of quiet, it is possible to find that little candle of happiness still burning, underneath all of the tears of anger, sorrow and frustration.

Depression, on the other hand, is the absence of that flame. You can push yourself, just like you push anyway with the pain and fatigue, to do your everyday tasks. You can cover it up with laughs, alcohol, drugs, music, company, whatever you think might make you happy. But really, all of it is to cover up the knowledge that that flame is gone.

I became acutely aware of that as I had to come off some nerve pain medication rather suddenly. The burning in my arms, trigger points, and spinal cord became more insistent, along with my other FM-related woes – but that was expected. What was a little unexpected (and perhaps stupidly so) was the effect it had on my mental health. I felt a return of my depression and anxiety like I haven’t felt in a decade.

Then funnily enough, I saw the light (again) on one of my absolute worst days. My muscle spasms were so bad in my upper back that I was largely immobilized from neck up, and I could only move my right arm with intense stabs of pain with each movement. Yet, I had promised to bring my friend’s daughter to the circus, and I did not want to cancel on an 8-year-old. So I doused myself in every pain relief method at my disposal, and I went.

Despite all my pain, the joy that emanated from the child at her first circus took precedence over all my misery. I feel like she not only stopped me that day from delving deeper into the hole that I was in, but she actually pulled me a little bit out of it!

That night was one of the worst nights I ever spent. I was practically paralyzed from the pain, and the only reason I did not go to the emergency room is because it would have caused me more pain to get there than just languish in bed.

Silver Lining_framed
The Silver Linings (5X7, oil on canvas)

And yet, that night I was able to find a little bit of the happiness spark, like the flickers of light from a flint, as if a caveman was trying to start a fire. It was like the first dim light that touches the earth after the darkest part of the night. As if from the ashes, a phoenix was trying to emerge!

That flame then grew stronger a day or so later.

I had spent another night in intense pain, so much so, that my husband said I moaned aloud in my sleep anytime he turned, or even touched the bed. He fed me a pain pill, and then spent the rest of the night on the couch to minimize my discomfort. I did not learn of this until the morning, and was filled with so much gratitude when I did.

As I learned that day, gratitude is a like a breath of air on a little spark, a little blow of oxygen that can stoke the happiness flame, and help it realize its potential as a bright source of light.

Although you don’t need much to be happy, on the darkest of days, it helps to remind yourself of all that you do have to be happy about.

I have much to be happy about. I have a husband who is made of the stuff of dreams, I finally have access to my nerve pain medicine again, my pain is slowly getting better (progressively fewer screams have been heard by my neighbors over the last couple of days), and I have a very understanding doctor. Not to mention the friend who trusts me with her children, on whom I can shower my adoration as if they were my grandchildren, and with whom I can connect and find tender joy.

Yes, I also have many challenges that I am going through right now, but I have a lot more to be grateful for. To be happy for.

So today, now that I have the choice, I will try to focus on the silver linings when I look at the clouds from my window. And by doing so, I hope that window opens into another dimension, one where the flame of happiness continually glows bright within me.

Love,

Fibronacci

 

Each painting has a story, one that I strive to tell here. Since many of them have to do with my journey with fibromyalgia, 20% of all yearly sales income from my paintings will go to the American Fibromyalgia Syndrome Association (AFSA), who fund research into this poorly understood condition. If the paintings and/or the cause touch your heart, as they do mine, please feel free to contact me through my Facebook page for more information. Thank you for accompanying me on this journey!

How Acceptance can lead to Happiness

A few weeks ago, I was triggered by an certain events to give some serious thought regarding “acceptance” of a chronic condition as a philosophy. And then of course, I had to wonder: why do we seek acceptance in the first place?

acceptance_1

On a practical level, acceptance can mean that we are finally in tune with our bodies, and are working it without overworking it. Thus, we are able to find some sort of a steady state for ourselves, where the ups and downs are not too high or too low. This, of course, is a reason all by itself to accept an unpredictable and often brutal illness like fibromyalgia!

But I feel like the true essence of why we seek acceptance lies in its emotional impact. A state of acceptance promotes a state of happiness.

acceptance_2

Chronic illnesses are difficult beasts to deal with. I had previously likened fibromyalgia to being in an abusive relationship, in many ways. It is the invisible partner in my life, who beats me black and blue from time to time, often for no apparent reason. Such chronic conditions can be extremely frustrating to try to build a life around.

When one is in denial of a chronic condition, I feel that is akin to an all-out physical battle between the self and illness. The self wants to make no room for the illness; and the illness retaliates with resentment, and wishes to annihilate the self! On the other end of the spectrum, when one is resigned to the chronic illness, they have given up the fight completely, the enemy is camping out in the self, ravaging it from within. Both states leave the chronic illness sufferer feeling very helpless, as they struggles with losing control over their bodies, and their lives in general. Neither is conducive to seeking happiness with a chronic illness.

Somewhere along that continuum lies acceptance. Here, there is no all-out battle; neither is there a simple surrender. It is more of a quiet, deliberate, game of chess between the self and illness. Each calculates their move carefully; and if played right, the self usually gets the upper hand!

So how can acceptance lead to a state of happiness?

1. By offering PERSPECTIVE. Accepting a chronic illness does not mean being OK with half a glass of water, or even necessarily thinking it is “half full.” In my view, acceptance offers a realist’s perspective, where the glass is both “half full” and “half empty.” The chronic illness may have taken a lot from us, but we still have a lot of us left! Accepting the condition means taking both into account. We may have lost our energetic selves and left counting spoons through the day; but we still have our goals and interests! Being able to keep sight of the fact that we remain “ourselves,” underneath the burden of poor health, helps the happiness quotient!

2. By encouraging a PROBLEM-SOLVING attitude. Once we accept the chronic condition, we begin to acknowledge the associated problems and limitations, and then find practical solutions to them. Instead of the illness itself, the focus now is on overcoming the limitations the chronic condition imposes. This problem-solving attitude puts us back in charge! We can begin to plot how to rebuild our lives around the chronic condition. It is a way of regaining some control over our lives that the chronic illness may have snatched from us. Nobody likes to feel tossed around on the choppy waves like a rudderless boat. The feeling that we still have some power to steer our lives in a satisfactory direction, albeit perhaps towards an alternative to the original one planned, is an important ingredient in the recipe for happiness.

3. By promoting INNER PEACE. A combination of the understanding that the chronic illness does not fundamentally change who we are, and that we can continue to be somewhat in charge of how we work around it, promotes a sense of inner peace. We learn to identify that the chronic illness is a part of us, but that it is only one part of us (out of very many)! Once we have made some level of peace with that, it limits self-doubt that is often triggered by others who doubt us and/or our diagnoses/conditions. It all promotes a level of inner peace that I think is crucial to find a state of happiness, if not the very essence of happiness itself.

Most of my “happiness philosophy” stems purely from my own experiences, both from long-term growth as well as brief moments of revelation, followed by long periods of meditation on my experiences. But it’s interesting to see how much of it aligns with the current research on what makes people happy! Yet “happiness” is a very personal thing, with each person having their own definition of what happiness means to them.

But there is also a higher level unity in human psychology. People from almost any part of the world, belonging to any religion or any culture, generally find happiness when they feel like the universe is their friend, instead of it trying to thwart their every move. They find happiness when they can see themselves, and their trials and tribulations, in perspective, instead of feeling like they are being manipulated by unseen hands. And no matter how one defines what core happiness means to them, cultivating a state of mental peace is crucial regardless. In fact for many, that state of inner peace, itself, is what they might call happiness!

Collage_1
Heartbeat – a digital abstract series focusing on the unity of minds in search of acceptance and happiness

It can be very difficult, however, to not feel like the universe is playing nasty practical jokes on you when you suffer from a chronic illness. And cultivating a state of peace amidst the inner turmoil can be difficult indeed. But accepting that illness may be the first step to emotional healing! As I said in my previous post, however, the road acceptance is not a straight path, and the very state of acceptance is along a continuum, and ever-changing like a dune. But regardless, in looking into ourselves to seek it anyway, we might unlock the secrets of finding our secret source of happiness.

Love,

Fibronacci

 

MORE IN THE ACCEPTANCE SERIES:
Part I: A Lesson in Perspective and Acceptance
Part II: What is “Acceptance”?
Part III: How Acceptance can lead to Happiness
Part IV (A): Seeking a State of Acceptance
Part IV (B): Fighting the Denial of a Chronic Illness

 

READ MORE ON ACCEPTANCE AND HAPPINESS:
On Acceptance and Healing
What does it mean to be chronically ill and happy?

What is “Acceptance”?

“Fibromyalgia is kind of like my logical nature, there’s no point wishing I was different regarding either!” So went my thoughts one day, that landed me in a long reverie about what it meant to me that I had absorbed my diagnosis like so. I had written before about what acceptance meant to me on a practical level. But now I wondered, what does acceptance, as a philosophy, mean to those of us with a chronic illness?

Featured painting: Guided by the Lights (8X10, oil on canvas)

I think of acceptance as lying on a continuum between denial and resignation:

acceptance_0

Denial:

In a nutshell: The chronic illness does not tell me who I am or what I can do!
Keynote: Defiance

On one end, there is extreme denial that a chronic illness even exists. Often, this results in massive overexertion, leading to increased pain and fatigue. So one rests, feels better, and starts pushing their body’s limits almost too soon after, landing themselves back in a state of flare. The huge hills-and-valleys in the state of their health takes a toll on the mind. Frustration gives way to a strong sense of grief and loss, even depression. Nothing they do feels like it’s enough. They feel inadequate in their new state, like a shadow of their former self. So they do everything possible to act as if nothing happened, and carry on with their old lives, in order to feel like less of a failure. And the vicious cycle continues, amidst a general state of mental and physical anguish.

Resignation:

In a nutshell: My chronic illness is who I am.
Keynote: Capitulation

On the other end is what I call resignation. This is where one has lost their mojo, they see no point in fighting the illness at all (perhaps after a long fight with it already), frequently in a state of depression. The combination leads to being involved in too little activity, which can slowly result in deconditioning of muscles and joints, making it even harder to move and participate in meaningful activities. One begins to wonder what is the point of even trying, if that only makes the pain and fatigue worse. They often lose any social circle they may have once had, thus feeling more and more isolated. Loss of job- or hobby-related activities can make it feel like their lives lack any meaning, leaving only a shell of their former selves. All hope for any light at the end of the tunnel — or even an end at all! — has withered to ashes. The resulting mental toll pushes them to retreat even further into their shell, thus compounding the vicious cycle.

Acceptance:

In a nutshell: The chronic illness may dictate what I can do, but not what I can be.
Keynote: Determination

Somewhere in the middle of that spectrum, I imagine, is acceptance. This is where one recognizes that there is a new kid on the block, namely a chronic illness, that wants to “play” too. The kid can throw a lot of temper-tantrums and really bring them down, but they are stuck with each other. So they may throw a few blows at each other, but ultimately, they know they have to get along — somehow! This is where one makes peace with their body and listens to it carefully, yet they don’t stop fighting the illness invading that body either! Acceptance does not mean that one is necessarily OK with their limitations, but realize that it is to their advantage to acknowledge what they are. And yet, they don’t allow the limitations to define them either! They continue to engage in the activities that lend meaning to their lives, but on different terms than before — on terms their body can reasonably manage. Like a good coach, one pushes the body, without pushing it over the edge!

I don’t mean to imply that these three states are quite as far away from each other as the neat little line diagram might make it seem. It really probably is much more like this:

acceptance_1

I imagine acceptance is a point of “happy-medium” that is in a state of dynamic equilibrium. There is a healthy dollop of both rebellion and submission, but they are balanced in just the right proportions so that it evens out. A bit like destructive interference between oppositely-oriented feelings, which each make waves, but together it’s a recipe for being able to find inner peace.

Dealing with a chronic illness is complicated, and there are many shades of grey. One does not move in a clear path when seeking their state of acceptance. It is a convoluted mess of feelings, with a lot of going back and forth, until one finds their own “happy-medium,” where they are most at peace with themselves. And this “happy-medium” may not always be the same either. It could change with age, experience, addition of new symptoms, alleviation of old ones, gains in perspective, changes in support structure, and a host of other factors! And even after finding, readjusting and fine-tuning this point of “happy-medium,” one may not always be at peace! But for many of us with chronic illnesses, it may simply be enough to be able to feel the calm most of the time!

That, at the moment, is my idea of acceptance.

Gentle hugs,

Fibronacci

 

MORE IN THE ACCEPTANCE SERIES:
Part I: A Lesson in Perspective and Acceptance
Part II: What is “Acceptance”?
Part III: How Acceptance can lead to Happiness
Part IV (A): Seeking a State of Acceptance
Part IV (B): Fighting the Denial of a Chronic Illness

 

READ MORE ON ACCEPTANCE AND HAPPINESS:
On Acceptance and Healing
What does it mean to be chronically ill and happy?

A Lesson in Perspective and Acceptance

Is the glass half full or half empty? In one’s mind, it may be either, depending on whether they bend towards a more optimistic or pessimistic view of the world. But in reality, it is both. Admitting this realist perspective offers an opportunity to cultivate acceptance, which can then lead to happiness!

69_The In-Joke

There was a perfect storm of unpleasant events about a week ago. Allergy season brought on a sneeze-fest, which triggered intense spasms in my back, that then wound up my muscles up in a knot most sailors would be envious of. The back tension spread to the neck and head, eventually bringing on a bout of recurrent migraines, complete with the ice pick stabs, aura, and symptoms of trigeminal neuralgia. After waking up in the middle of one of the worst attacks of the series, I painted a dream image titled “No End in Sight.”

I will not lie, I intended it to be every bit as depressing as the title sounds. At the time, the pain felt relentless. By this time, I had been in a flare more days these past few months than I have been “normal.” I tried to encapsulate complicated feelings of hope and hopelessness, pain and exhaustion, the desire to keep trudging and the desire to just stop, all at once, in the painting below.

Abstract_11_No End in Sight
No End in Sight (a journey through time)

And yet, a friend, one far better versed in chronic pain than myself, planted an idea in my head that helped me see this image differently. She pointed out how his burden gets lighter with time!

That sprouted a thought in my mind: perhaps he is not giving up after all! Perhaps his perspective has just shifted, and he is simply accepting that he is stuck in the desert for the moment, that there is no use fighting it, so he might as well accept his current situation. As he tries to find peace within himself (note the hermit look by the end), even under the less-than-stellar circumstances, his “burden” is made lighter.

Though this might seem like a silly optimist’s game of what-do-you-see-in-the-picture, ultimately, perspective is all that matters. I felt it acutely on the 4th day of my recurrent migraines, when I felt momentarily delighted to wake up with my regular all-over fibro pains! This meant that my headache intensity had now lowered enough for me to feel pain elsewhere on the body! Of course, that delight was short-lived once the spasms started reasserting themselves, and another migraine attack followed shortly thereafter. But in that bizarre moment when I was happy about fibro pain, I learned an important lesson in how much our perspective on a situation determines our response to it, much more so than the situation itself.

I do not believe that one needs to be an optimist to find happiness in tough situations; one only needs to be a realist. If you are wondering if the glass is half empty or half full, I would argue that it is both! No situation is all good or all bad (despite chronic illnesses tending towards the latter). As an example, I recognized that because of the rest that my unwelcome migraine forced on me, I am in less pain overall (for most of the day) than I have been in months! Being able to see both the good and the bad of fibromyalgia and its associated maladies have helped me accept things for what they are. And with acceptance comes some measure of inner peace, which then translates to happiness.

I have written in the past about what acceptance means to me on a practical level, but not much about what acceptance, as a concept, might mean (or what it might not!). And though I have implied the role of “acceptance” in finding happiness with a chronic illness, it doesn’t much help those still in search of either. So I have decided to do a series of posts after this one, talking a little about what acceptance means from my perspective; how it can lead to happiness (or at least, less frustration); and finally, some of the ways by which I think I was able to achieve that state of mental stability. I hope that my insights can reach somebody still in search of these ideas, and that they may spark thoughts in their minds that lead to their own personal definition of acceptance and happiness!

Love,

Fibronacci

 

MORE IN THE ACCEPTANCE SERIES:
Part I: A Lesson in Perspective and Acceptance
Part II: What is “Acceptance”?
Part III: How Acceptance can lead to Happiness
Part IV (A): Seeking a State of Acceptance 
Part IV (B): Fighting the Denial of a Chronic Illness

 

READ MORE ON ACCEPTANCE AND HAPPINESS:
On Acceptance and Healing
What does it mean to be chronically ill and happy?

Reflections on Graduate School, Academia, and the Way Forward

This week, I successfully defended my doctoral dissertation, and added my name to a long list of Ph.D.s in biology – and a shorter list of those with a chronic illness.

title_ _Brain-body problem_ - originally published 10_1_2010 - Jorge ___
How a fibromyalgiac gets a Ph.D.!

As I have researched the case for disabled and/or chronically ill scientists, I realized that there may actually be more of us out there, all hiding our own plights (if invisible), so as not to be viewed “differently” at best, or ostracized at worst, by our colleagues. Many have quit science altogether because of its notoriously performance-driven culture, which allows little room to show “weakness.” Yet there may be many more of us who are still striving for our own goals in science, wishing to contribute our curiosity and intellect to better the world, and wanting to make a mark independent of our diagnoses. My thoughts are for all of us today.

Featured image: Distorted Reflections (8X10, oil on canvas)

I was diagnosed with fibromyalgia halfway through graduate school. I have been tackling random aches and pains, migraines, etc. since my teen years, but sometimes I wonder if the grad school lifestyle is what triggered any latent tendencies for central sensitization, leading to fibromyalgia.

I have no regrets, however. I always thought that if mathematics and physics are what helps us understand the universe and everything in it, biology is what helps us understand why we can even think about it! So to be able to reach a terminal degree in biology, understand ourselves from a molecular standpoint, showed me that I am capable of not just partaking in this world, but also contributing to it. Here, finally, I could apply my logical and analytical thinking towards human health, instead of just using it to aggravate my parents who had no time to argue.

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What NOT to say to a chronically ill person

I will admit that at times I thought of quitting, and I am glad that I did not. I was lucky enough to have projects that allowed me to be very prolific through the first couple of years, so I was well on my way towards a successful Ph.D. before FM even hit me. It would have been sad to see that work not reach fruition. I was also able to wrack up enough “karma points” by then, through my diligence and good reputation, that I could afford to slow down but still keep trudging. Luckily, graduate school in an academic institution affords the kind of flexibility that I may never experience in any other setting. So all the reasons to quit were psychological, nothing logistical.

Psychology can be powerful enough to transform us and shape our decisions. With some practice, and within reason, we can learn retrain our brains to think of current obstacles as future achievements. The hardest part about continuing grad school was not that I felt I couldn’t do the work. It was, instead, the loss of respect I felt at every turn when I could not keep up my former hours, or work at the same speed – the perception that I was now somehow weak or less than I was before. A large part of this was not necessarily just other people, but also “academic conditioning” that was haunting me from within my subconscious. But regardless of this general no-room-for-weakness atmosphere, or perhaps precisely because of it, I learned to see myself as quite the opposite of how they would have liked to paint me.

I realized that, because of my experiences, I was stronger and more than I was before!

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Anima (8X10, oil on canvas) — my internal warrior & heroine!

One thing I recognized since being more selectively open about my diagnosis is that everyone is fighting their own battles. But one is not made a hero for just fighting, or even winning, a battle. One is made a hero for how they fight it. I decided I was going to fight mine, and fight mine well. I felt increasingly that it was not enough, any longer, to just try to be a good graduate student, or strive for women scientists, or be a feminist voice for career-women in the conventional sense. I had to find within me to be more than that.

I decided that I will strive to be a better person because of my struggles, internally as well as externally. 

I will learn to be more compassionate (towards myself, as well as others who may not always be understanding of my condition); I will try to reengage in interests I may have lost touch with (so I am not beholden to the one deity, science); and I will be even more introspective than I was before, learn more about myself, so I can carve out a new identity for myself as I move forward.

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Drawn into the Light (7X14, oil on canvas)

Once upon a time, I used to be naive enough to think you can get whatever you want, be whatever you want, as long as you work hard enough for it. But life makes too many decisions for you, and often at very critical stages, so that is not always possible. Once upon a time, I had dreams of being able to follow my intellectual curiosity wherever it took me. The reality, however, is that if I did that, I would be potentially looking at 60-hour work weeks with little time for rest. I would be a flaring mess of pain and fatigue if I followed that route!

But it is not impossible to reimagine ourselves, our interests, our desires, and channel them into another path. The last two years of my life, trudging through grad school with FM, I have spent a lot of time focused inward. I have questioned what I like and why I like it, and how I can do it differently in a way that is conducive to a healthier lifestyle. I have also had to untrain my brain from thinking my intellectual pursuits are automatically married to academia. Once I did that, I could see the different possibilities that may still be out there for me.

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Reimagine the possibilities!

So by no means is this the end of the road for me. I like to think of it as a fresh beginning. I have gained insights through my years as a graduate student with a chronic illness that I could not have gained otherwise. It formed a preface to my life’s goal, which is learning how to merge my health needs with my intellectual ones without completely giving up my ambitions. The next years will write the chapters on how (and if) I am successful in ever attaining it.

I look forward in continuing my journey forward, and sharing any insights with you. Thank you for accompanying me so far in this roller-coaster ride that led to my Ph.D.!

Love,

Fibronacci

The Joy of Painting

I haven’t talked much about painting or the painting process in this blog, but it has been one of the most important ways I have been able to handle my fibromyalgia diagnosis. There is so much more to painting than what meets the eye. It is not just mixing paints and adding color. As I discovered one day – much to my own surprise – painting is a state of being!

Painting allows me to depict my world and my experiences the way I see it. It gives me the freedom to explore my frame of mind. It is a safe space where I can unleash my pain, sorrow, frustration, anger, confusion, joy and creativity. In the security of the studio, surrounded by the paints and brushes, I have the power to create a physical embodiment of my emotions. Then in choosing to share that piece of my inner world, I allow others to feel a portion of my feelings. It gives me freedom and power to accept, to portray, to share, and with only as much depth and complexity as I would like.

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Spring Snow (8X10, oil on canvas)

What does the painting of the dense woods on a snowy day make you think/feel?

With an illness like fibromyalgia, which has often left me feeling alone and misunderstood, painting has opened up a safe avenue for a dialogue with the world. An emotional painting forces engagement with the viewer. A desperately private person, I feel uneasy opening up my own mind, heart and soul. So my paintings have been a window into my world! I prefer this mode of conversation, in many ways, because I do not have to explain my situation to anyone. An emotional painting does not necessarily force the audience into the artist’s mind. It makes them look into their own, through the prism of their own experiences, and find within them the emotions that the painting embodies or evokes.

I have found security in being able to paint, both as a way of exploration as well as expression. And in a surprising way, that has really helped me deal with the many aspects of my chronic condition.

Love,

Fibronacci

Tough Realizations (Part II)

After a recent particularly bad flare, I had to make a difficult decision to walk away from a field in which I realized I was not welcome at anymore. If I stayed, I would constantly be forced to push myself beyond what I was physically capable of, and would still not be able to meet expectations. So you would think the separation would be mutual and amicable; yet it is not.

In many ways, I feel like I am still very tied to my work identity (although it’s been a work in progress detangling myself from it). Being a “scientist” is one of the major ways I identify myself. Every other descriptor I could think of – artist, woman, chronic illness fighter, etc. – are all farther down the list. When I think of descriptors of myself, “relationship phrases” don’t show up very high either. Many people identify themselves strongly as a parent (father/mother) or child (son/daughter) or spouse (husband/wife), or in other such relationship terms. I have trouble with that. I have always been a painfully independent person, almost to the point of being a loner. And I suspect it is the associated loss of both personal and financial independence, that comes with being ill and out of work, that is at the core of why it has been so hard for me to face the fact that I just need to take a break to focus on my health for a while.

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I am tired of pretending I am stronger than I am . . . so why can I not STOP?

The loss of personal freedom has been something I have been constantly struggling with since developing fibromyalgia. While I can be great at offering and providing help, I absolutely suck at seeking and accepting it! It took me a while to even recognize that I had my partner in my court, and that its OK to lean on him and allow him to help me. It made a world of difference once I let myself be helped with my day to day tasks! And for once, I felt comfortable enough being helped that I never realized how hard it would be physically to live without that help!

Living in a small town, my chances of getting a job here were pretty minuscule, especially in science. For many years, I kind of saw this as a boon because I hated being trapped in one place for too long, and this place seemed to come with its own time limit. But now that it was time for me to move on and take a job in a different part of the country, I had to seriously consider how I would manage a demanding full-time job with other issues like uncertain transportation (potentially a lot of walking), cleaning, cooking, laundry, bathing/hair washing, and a myriad other day to day things that I often need help with. All of the little things that didn’t even merit a thought in my brain at one time are now all serious issues that have the potential to wipe me out and flatten me on my back for days.

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Accepting help is its own kind of strength

I realized that for the first time, I actually need my husband to be with me, physically, and help me out! Not to mention, I would also need him financially, if I were jobless, and not just to provide general subsistence (a shared need), but also for my healthcare needs (a very personal one). And I have never needed anyone in that way before. As a person who prizes her independence, that realization – that I might really need someone now – was one of the toughest I have ever had to come face to face with.

My husband knows how hard that is for me. In fact, he has always known it. That is why he has never made big deal of helping me – he just did it quietly and unassumingly – and made a point of doing so without treating me like an invalid. I feel like very few people are lucky to have that kind of love in their lives. And that is why – perhaps what has been even tougher for me to face – is that even that kind of selfless love does not make up for the sense of loss that I feel due to my illness.

This realization has been really hard for me because it is almost like admitting his love is not enough, despite everything he does for me all the time. And it makes me feel guilty, because he has been the only constant force through many of the things that I have been battling for many years. Yet it is not as if I am not grateful to him and for him. But it is the gratitude that one might feel for nurses when interned at a hospital. It’s great to have that tender loving care, but they would much rather never be in the hospital in the first place!

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It is through the snow that spring bursts through!

Though, in some ways I wish I never had to face these harsh realizations, in other ways I am grateful for them. It has given me a chance to really think about why my work identity matters so much to me. Why am I so loathed to accept help? Why do I feel this insane need for independence? It has given me an opportunity to delve deeper into myself and work on long-standing issues that I may never have otherwise. So as a person who craves new and varied experiences, as unpleasant as this one is, I still see it as an adventure! I am still expecting good things to come out of this time of uncertain and difficult realizations. I may be a ship in a bottle for now, but that doesn’t stop me from still looking out towards the sea.

Love,

Fibronacci

Tough Realizations (Part I)

What felt like a whirlpool inside a sinkhole around this time last week, is finally looking like just a simple crater (minus the suction) now. For the past month or so, I have not been able to fully shake off a flare. With fewer hours spent at work or recreation, and more resting on my heating blanket in bed, I feel like I am starting to get this down to somewhat manageable levels. My doctor and I are also working on new medication to see if that can help with the daily pain and fatigue management. The upshot of all of this has been a lot of soul-searching, a healthy helping of frustration and some unavoidable, tough realizations about the way forward.

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“Pushing Through” – crocus flowers pushing through the snow in spring (digital, “oil on canvas” finish)

Until last year, I had some hopes of being able to graduate and move on to an academic postdoctoral training job. I had the condition enough under control to be a reasonable (though less-than-ideal) postdoc for few years to gain the training I would need to eventually move on to a more cushy, permanent job. But I rapidly realized that those dreams were castles built in air, for two reasons:

(1) My body decided even coming close to that kind of workload is a no-go.

(2) “Reasonable” postdoc jobs are practically impossible to find. The boss wants a publication-machine, not a person with a life. Add a chronic illness to that? Unthinkable!

Which brings me to the tough realization – that unless a fairy-godmother steps out of a pumpkin for me, I am probably going to have to take a real break after graduating and be out of “real” work; or (what feels like a complete non-option), take on a postdoc job that might be the (figurative) death of me.

In case you were wondering what I mean by “real” work, you are in good company. I have been giving that a lot of thought lately too, and may be topic for a future post in itself.

I feel like some part of me knew all along that it would come to this, but I needed the latest flare to remind me to quit kidding around. I spent the entire last year coming up with every reason for why I cannot be out of a job – everything ranging from financial, to emotional, to career potential and innate ambition. But all of that has come to nothing. I realized that the time is here and now for my husband and I to start revising our budget to account for the absence of my paycheck. And I am not looking forward to the pain that changing health insurance plans will inevitably be!

What I do know for sure is that it would be utter stupidity now to ignore the gut-punch that my body has just dealt me. (Talk about tough love!) And that I need to prioritize my health in a very real way – not in the kind of tangential way I had been doing before. I know things are going to be financially tight for a while, but I am hoping that taking a temporary break will help me get back to a different kind of work later on. Otherwise, I am afraid I might crash for good at some point in the (probably not-too-distant) future and never be able to work at all, and then finances will be tight forever!

For now, I am trying to focus on pushing through one day at a time. I try to keep my chin up that this might be the beginning of a new trajectory that might lead on to a fruitful new journey. I am not one who believes in regrets. I believe that every path we choose at a fork leads us down a different probability. And each of those probabilities will have its own ups and downs, and none will be perfect. So take your pick and let life lead you on!

Love,

Fibronacci