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

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!

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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.

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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.

recycled-art
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

Weekly Photo Challenge: Earth

There is so much beauty in all the seasons we experience living on our planet. Yet, all too frequently, I find myself complaining about the heat, or the cold, or the rain because of how I flare every time the weather changes. The frustration that the unpredictability of my condition brings results in a narrowing of my consciousness. That, in turn, renders me unable to enjoy the beauty of nature, many a time, because I associated that with pain and/or fatigue.

But even when I am fatigued, the roses still bloom in the summer, and define beauty with their colors! Despite the increased stiffness in the winter, sunshine on the snow still spell magical delight. Spring and fall, with their allergies and migraines, nonetheless bring gorgeous colors befitting a fairy tale to our earthly lands.

Seasons_5
The Spirit of the Seasons (collage)

So I often feel selfish for judging the seasonal variations for its impact on me, instead of recognizing it as a beautiful, joyous element in its own right. Instead, I yearn to be free of all “associations” when I observe nature, so I can enjoy true beauty for beauty’s sake!

It is my hope that, one day, my art can help me transcend the trappings of my aching body, and expand my consciousness, such that I can really feel one with the Earth and all that is bigger than ourselves.

The collage of my paintings (Spirit of the Seasons) is an attempt to inch closer to that state of being. I hoped to use colors and textures to really feel each season, to absorb its allure, instead of it being solely a visual depiction of items we associate with a certain time of the year.

It is my way of paying homage to nature – the ultimate artist that paints “Mother Earth”!

Gentle hugs,

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.

heart-mind
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

If I Had One Wish . . .

. . . I would wish for perspective. It is so hard to gain and so easy to lose, especially in difficult times.

Over the course of the past year, I had been able to slowly piece back together some of the shreds of my old hopes and dreams – only to feel like they are now being shattered all over again. And the only thing that feels worse than losing your life, is thinking you have it back and then losing it again.

Featured image: Contemplating the Darkness (12X16, oil on canvas)

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What do you think he is wishing for?

I don’t think I had ever quite fully appreciated how much my FM symptoms had improved over the last year or so. With medication, reduced work load, regular exercises and prioritizing rest, I was able to attain some level of normalcy. It was a new normal, but it was a normal. And for the most part, I was feeling better.

In some ways, I was really thinking that I had this thing under control . . . that I was ready to move on to a full-time research intensive job – something that had seemed unthinkable to me just a couple of years back. I knew I could not stay in that high-stress environment forever, but thought I could manage the less-than-ideal position as a temporary stepping stone to something better. I was finally starting to plan for my future again.

But as the work load quickly ramped up this semester, in preparation for graduation, all hell quickly broke loose. What started as a mild flare is now feeling like a full-blown relapse. The bad weather spell we seem to be in is not helping either. And yes it has been stressful. But if it is just the weather or the stress, I am reacting to them far worse than I have in a while.

The pain levels have risen sharply, becoming more widespread, and staying that way most days even with pain medication. The stabbing pains in my chest, diaphragm and back have made breathing a laborious affair. Talking can take much effort, and sneezing, hiccuping or coughing is making me cry out in pain. The fatigue can feel bone-crushing in itself at times. But sleep is a precious commodity that is not easy to come by under severe discomfort (especially when you’re a side-sleeper and the nerve pain is raging on that side!) – thus perpetuating a vicious cycle.

I can already feel my mental state suffer, despite my efforts to stay calm and carry on. Despite a conscious effort to be friendly and social, I am feeling more moody, less patient, and snapping more easily than I would like. I am genuinely afraid that I am more or less back to square one in my fibro journey. And that it is all my fault for pushing my body too far, as soon as I started feeling a little better.

I feel like I had lulled myself into a false sense of security when I was beginning to hope again. But I am realizing quite acutely that the lifestyle I would need to maintain to continue feeling better is not one conducive to the life of a scientist! Very few grad students, and barely any postdocs, can get away with coming to work around 10-11 AM, working barely 6-8 hours a day, and taking large chunks of time off in the middle of the day for PT/rest. Most work 60-80 hours a week. I am entering a relapse after a couple of months of not even 50!

This was an important lesson for me. I learned that I cannot slow down, feel better, and decide now I can pick up the pace again and all will be well. Fibromyalgia requires a lifelong management scheme. And while I had made some level of peace with that, I was just not prepared for the violence with which my body would react to the idea of temporarily deviating from that plan.

In a weird way, when I was working those ~50h/wk for the month or two, I felt a vague sense of accomplishment. I was trying my best to still squeeze in some rest, and trying to only start work during my “best hours.” So I felt a renewed power, a sense of vigor, from feeling like I may have beat my condition and risen on top of it. I was able to snatch back from it some fragments of my go-getter self that I hated losing the most. But alas, that was not to be. And that feeling of loss for a second time feels like a slap in the face. Like I have been put back in my place.

At a time like this, I keep reminding myself that this current low is not going to be forever. I can still plan for other things in my life. I have changed plans before and I can change them again. There is a lot of things I can do, and this one setback is not the end of the world. This closed door may even open new windows. In other words, I am striving to remind myself to not lose perspective. Yet, that is the one thing that is gained with so much difficulty . . . and yet lost so easily!

Love,

Fibronacci

What does it mean to be chronically ill and happy?

If I had to define what it meant for me to be happy, I would call it a state of mind born of blissful contentment and a feeling that all is right with my little world. But as a chronically ill person, haunted at times by the ghost of depression, whose life feels turned upside-down, what does happiness mean for me now?

I always had the feeling that, even now, happiness still held the same meaning for me. The rules of the game never changed, only its appearance has changed; like instead of the familiar black and white chess board, we are now playing the same game with a blue and yellow color scheme! But “a sense of blissful contentment and a feeling that all is right,” when I am not “content” being a fibromyalgiac and everything is clearly not alright, how is that possible? How can it still be the same game?

These are questions I have been meditating over for a while now. But the epiphany came to me one day as I was showering after my pool exercise session. No, I did not run out naked yelling “eureka!!!” but it is funny how these things happen, isn’t it?

Eureka!
Yes, well, except I wasn’t in a bath . . . and I didn’t have a long-sleeved shirt on either. (Who does that when bathing anyway??)

It has been a busy month or so for me. There were more social engagements last month than I had attended in a year. At the same time, the pressures at work have been mounting as well. The result was occasional increases in pain, fatigue, and self-doubt regarding how I was handling my situation . . . was I over-committing myself? Why did I accept the invitation? Why do I feel the need to push through when I should clearly stop?

Yet underneath all of that, I detected something else – I detected happiness.

And then I realized that it really came down to a simple equation! If you feel like your life is delivering more than you expected it to, you feel satisfied and content and happy. Conversely, if reality starts falling short of your expectations, the result is resentment and unhappiness.

Featured image: Light from a Blue Door (16X20, oil on canvas)

At this point in time, I had spent several months being utterly miserable, not being able to really do much of anything. So now, being able to be there at a friend’s wedding, or at their birthday dinners, or just a couple of evenings out goofing, being able to attend the Bob Dylan concert with my husband, all of this meant a lot to me. I had expected the extra activity to cause increased pain and fatigue. I knew beforehand that I will have to pay for it over the next few days. But all of those little moments shared with my husband and my closest friends brought me happiness! And the ugly reality of my fibromyalgia symptoms could not put out that glowing ember because it was nothing I didn’t know was coming! In fact, I was nowhere near as bad as what I had mentally prepared myself to be. So you see, my reality far outweighed my expectations, despite the aggravated symptoms. And there I was – chronically ill, and happy!

In many ways, I have been happier since developing fibromyalgia than I was before. The chronic illness forced me to slow down and appreciate what I have in the moment, instead of blazing through to next finish line. It gave me time to realize how much I cherished having a flexible job with a reasonably understanding boss, how much my relationship with my husband meant to me, how much I enjoyed pursuing my hobbies (something I had all but given up to the harsh mistress that science can be!). It taught me to live moment to moment and take life as it comes. This is in stark contrast to my old self (whom I haven’t completely disowned yet), who was in constant competition with herself! I was never “blissfully content” with anything because I wanted to be more than I was before. Nothing could possibly “feel all right with my world” if I am constantly dissatisfied with it! The chronic illness forced me to drop my expectations far below what I could have ever imagined for myself. And then suddenly, I found my reality fared much better than those new lowered expectations!

In the end, thanks in part to my chronic illness, I realized I didn’t have to do or be anything to be happy. I simply am!

Gentle hugs,

Fibronacci

Overcoming Brain Fog

Going through life with a fuzzy brain can be challenging enough, even when one is not in graduate school! But being in a field where cognition is highly prized, I had to learn fairly quickly how to compensate for the brain-jelly effects of fibromyalgia and its medication.

Featured image: Reclamation (11X14, oil on canvas)

Below are the 5 most helpful brain fog coping skills I have learned.

1) Use your smartphone for lists and reminders : If you find you forget your memory aids (like leaving your grocery list at home), this one is for you! Most of us carry our smartphones with us everywhere, and it is easy enough to make lists, and add events to the calendar on those. They also have handy alarm and reminder features, which is a plus!

What if you have trouble remembering to add the commitment to the calendar on your phone? I find it best to add the event as soon as the appointment is made, before you have a chance to forget!

2) Jot down/verbally repeat key points in a conversation : Any discussion, specially scientific ones, require some level of on-your-feet processing of information for the exchange to be meaningful. When conversations start turning into word soup, I often find it helpful to repeat important points/questions, and/or write them down to help process it in a different way (auditory vs. verbal/written). Having quick notes also means you can think about it later and contribute your insight at a better time.

3) Avoid multi-tasking (if possible) : Multi-tasking requires being able to switch gears from one thing into another fairly seamlessly, which takes more mental capacity than just focusing on one thing at a time. More things happening at the same time means more chances for confusion and making mistakes. But if you must do it, below are two quick tips:

  • Multi-tasking tip #1: Take a short (mental) break between two tasks. This often keeps me from mixing up the details of one activity with those of the other.
  • Multi-tasking tip #2: Keep a plan of what needs to be done for each task. For example, if I am running 2-3 experiments that each take several days to complete, I will write down what needs to be done for each experiment on each day.

4) Use isochronic tones/binaural beats to help focus : I cannot say that I am 100% sure that brainwave entrainment actually works, but it is free and certainly something that is worth a shot! There have been times when beta tones have helped me not get distracted, and delta tones have helped me stay asleep . . . and there have been times when they have done nothing at all! They usually work when I use them for short periods of time, followed by periods of disuse. I suspect if I use it every day for too long, I start ignoring it, and that is why they stop working for me from time to time.

5) TEACHING TIP – Turn brainfarts into teachable moments : In my experience, students typically respond well to your mistakes if you can praise them for being able to spot it, with an appropriate apology, and turn it into a teachable moment. And if you are asked a question you do not know the answer to, it is OK to admit to not knowing it and offer to look it up for them. Alternatively, teach your students to be independent knowledge-builders by showing them how to research (aka, google) their question themselves and find reliable answers.

A lot of the tips above may seem really obvious. But I had to go through some trial and error to figure out what now seems most elementary. So if you are in a spot where you feel forgetful, unfocussed, frazzled or foggy, I hope these tips give you some ideas for how to successfully wade through the murky waters, and be able to achieve more from your day!

Love,

Fibronacci