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?

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.

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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

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