The title is a bit tongue in cheek today because the little wildflowers are anything but “grand” in scale! But these tiny flower bouquets, that seem to crop up out of nowhere, add a lovely bit of color to the woods and can be such a joy to ponder. They can feel grand in essence despite their diminutive physical presence.
These little yellow flowers are abound during the spring season in a swampy wooded area I like to walk in whenever the weather isn’t oppressively hot. That isn’t very much of the year when one lives in the sub-tropics, so I really have to make the most of the time I have! That they are spring flowers should be no surprise given their bright as sun yellow color.
I find it sad how most people walk past these little beauties without a thought, only to behold the tall, defiant cypresses that grow in the same area. The latter are majestic and worthy of looking up to (and I mean literally, for these trees can be really tall), but in many ways, I prefer the delicateness of the former. The flowers just feel “happier” to me somehow.
That is so much of life, isn’t it? Especially with a chronic illness. When the good days are few and far apart, we try to make the most of what we’ve got. When the big goals seem too far beyond reach, we focus on the smaller ones. We learn to find joy in the smallest of things.
It sounds like a compromise, and everyone makes some compromises in life at some point or another. But when you’re young, you face judgement from ignorant faces, who are not intimate with your trials, but who feel you have made that compromise too soon in life. You’re left to wonder if you are getting “too comfortable too early” (in my Ph.D. advisor’s words) too close to the ground.
Or is it simply that you have realized that the things that mean the most to you are exactly where you are. That true happiness really is in the smallest, the most seemingly insignificant of things. And that when we reach for the heights, it is usually only to attain something of an illusion – an illusion of power, of respectability, of security. And during that process, as we are looking up at the heights, like that of the cypresses, we miss all the joyful little wildflowers that beckon to us from down below.
In a quiet, meditative moment, it may be wise to wonder: In the grand scale of things, which one matters more?
In the last few weeks, I have gone through another round internal conflict in trying to balance the part of me that wants to reach for the heights, and the part of me that sees sense in drawing the energy from the wildflowers. I concluded that the little joys of the present outweigh the potential of illusory powers in the future. While it is true that I would find much joy in making the best use of my scientific training to benefit society, I had to admit in a moment of honesty, that I would find more joy in not feeling like absolute crap while doing it! This meant finding a line of work that may be “closer to the ground” but more in line with my priorities.
None of this is to say I still don’t have that ambitious spark which would like to see me accomplish big, important things in life. But for now, I feel like just getting through my new exercise routine, without the excess fatigue grounding me in bed for the next several days, would be accomplishment enough for me!
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.
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.
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 theAmerican 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!
This was not the first time that I thought long and hard about what kind of a job would be better when leading a life with a chronic illness: one that is very flexible, or one that has a more structured routine.
There are lots of “pros” to a flexible job, like that of an academic professor or a lab director. You don’t have to be up too early, can rest in the middle of the day, and take time off for flares as needed. But there are “cons” too: you end up working odd hours, and the body often doesn’t know what to expect when. Not absolutely having to do something now, also means it is easier to put it off for later – and the ephemeral “later” may turn out to be a worse time than “now.” This has the potential to cause much stress, which can be a trigger for a fibro flare.
With a more structured job, days are better-planned, and there is a chance to settle into a reasonable routine, and perhaps reduce the frequency of flares with better pacing. But when flares do occur, it is harder to take time off. The other downside is that constant working during the day, and the pressure to stick to the routine, can get tough on the body, especially if you’re prone to fatigue.
On that note, I read two very poignant articles. The first is a great piece on the importance of routine, on a blog I always enjoy visiting, Invisibly Me. Our blogger is fairly convincing in how routines can be helpful when dealing with a chronic illness, and gives some great tips on how to boost your routine as well.
And the second is the story of a recent Ph.D. grad, on the blog ErrantScience: Clutter, who moved on to a “regular” (aka, normal 9-5) job and gave a deft comparison of the two. Her conclusion: the grass is always greener on the other side! Somehow, despite all arguments and my own better judgement, I think I will always agree with that!
As for me, during my Ph.D., I recognized that maintaining some amount of routine was critical for pacing. That routine involved allowing my body to “thaw” in the mornings (not rushing it before it was ready), working mainly during my best hours (10 AM to 7 PM), and using the evenings for rest (i.e., not bringing work home). I tried to keep a routine for painting and blogging as well, but that sort of fell by the wayside. Overall, I felt the routine helped me progress towards the Ph.D., while also not working myself too far beyond what my body could handle.
And now that I am done with graduate school, and have no set responsibilities, I feel like I am getting a whole lot of nothing done! I was planning on keeping up with my blog and painting better, studying for some technical licenses, finishing up my leftover papers from grad school – and of all that, I am only making very slow progress on that last one (and probably only because there’s a deadline looming for it). I suppose after working long and hard for so many years, I shouldn’t begrudge myself the rest and relaxation. It truly has been lovely to lay down in the afternoon (a time when I often experience an energy slump) and just read for pleasure! But I dislike the way I am being unproductive in all other ways. So clearly, some level of “work structure” is important so I don’t rest away the entire day.
However, I am also the kind of person who feels stifled by too much routine. I feel a bit like the fish in a bowl, bound by structure, doomed to swim round and round. I like a bit of spontaneity, freshness, and interest in my days – and too much routine is just not interesting to me. Not to mention, if I wake up feeling particularly crummy, I like to be able to go in to work late or take the day off, and have the freedom to make up that time in other ways. Losing that kind of autonomy might push me to work through escalating pain, instead of “calling in” and admitting I am sick (I could hear the voice at the other end going “AGAIN?!?!?!“). All in all, I just don’t see pattern working out so well.
And yet, I do like the feeling of getting work done in a timely manner (which requires some level of structure). Also, my body does usually fare better when it knows what to expect, rather than when it gets pushed in every which direction. Pacing, by its nature, requires a routine, and it has been proven to make life productive and less painful for many a chronic illness warrior.
I guess the bottom-line is that both flexibility and routine are important when dealing with a chronic, unpredictable condition like fibromyalgia. Ideally, I envision a job with a reasonable amount of autonomy, so there is the flexibility to call my hours. But with a job like that, there needs to be sufficient self-discipline to be able to set a routine for myself, so I can get all the work done, but on a pace I can handle and with allocated rest times that I don’t ignore.
I realize that it may be a tall order to find a job like that, where there is a mix of the best of both worlds. Until I get there though, that grass will always be greener on the other side!
I had initially intended my last article to be the final chapter in the Acceptance series of posts. However, recently a friend asked me a very poignant question borne of that post, which prompted this one. It is sort of an extension on my last post on “how to seek acceptance,” in answer to her question:
How do you fight the denial that creeps up even you mentally decide that acceptance in the best way forward?
In my best attempt at a response, I thought I would share my story, with more personal details than the previous one, about how I fought denial while in search of acceptance.
If you’re a frequent reader of this blog, you probably know that I used to be a very ambitious, go-getter type of person. I worked hard, and for the most part, enjoyed working hard because I enjoyed my work! The body was just a vehicle to get me about, nothing that needed any tremendous amount of attention. The idea of “listening to the body” was fairly foreign, it sounded “whiny” to me, like a hypochondriac. And this attitude meant I landed myself in frequent flares because I would ignore my body and what it was trying to say to me.
My avoidance of what the body was trying to tell me was not without reason. I felt like if I were to listen to it, I would never do anything, because I was always tired and achy and never really wanted to do anything at all! Every morning was a struggle just to rise and dress for work (and it kind of is even now). Mind over body, I kept telling myself, however. I just needed to will myself into breaking through the chronic illness mode. But the walls proved harder than I expected. And I almost always lost that battle.
It took me a lot of soul searching to realize that listening to my body is not being beholden solely to its desires.
I was afraid the latter would trap me into the “this is all that is possible” box, and I would not be able to see opportunities outside the box, even if they beckoned at me. I refused to accept all that my body felt or felt possible of it, but I realized that I needed to hear what it said. Then I could evaluate it in my mind, and decide on the best course of action. Mind and body needed to go hand in hand, not fight against each other. The mind still rules, but uses the body’s counsel, as it were.
And that, in a nutshell, is the essence of what “acceptance” has meant for me: Listen to the body; push it but without pushing it over the edge. The mind is still the king, the one who ultimately decides what to do, but one who uses the queen’s (body’s) guidance and counsel. It does not have to always do what the queen wants, but the mind-king must keep the queen-body in the back of his mind so as to not offend her. This idea of acceptance is distinct from “denial,” where the mind rules entirely by itself; and far from “resignation,” where the chronically ill body calls all the shots.
What convinced me to finally embrace this meaning of acceptance (and quit denying my body all of the time) were three pointed realizations, that I arrived at through many months of soul searching and internal dialogues:
1. The first thing I realized is that my old state is not coming back – and certainly not if I keep fighting myself like this!
Educating myself about FM and chronic fatigue helped me the most to come to this realization. Current understanding suggests that these are disorders of central sensitization. A maestro from hell, the brain and nerves in a fibromyalgiac have become so good at shooting off pain signals that they overreact to every perceived stimulus by doing just that. Fatigue and sleep quality are believed to linked to similar pathways, thus making us feel tired all the time (as if just fighting the pain wasn’t tiring enough!). The upshot of learning the science behind the condition was the recognition that fighting my body, and in turn having more pain because of it, is only setting me up for long term failure. The more practice the nervous system gets at sending pain signals, the better it is ever going to get at it by strengthening all those overactive pain-response pathways even more. Therefore, in relieving my body of as many perceived pain signals as possible, like allowing myself to rest as needed, I am really doing myself a favor. Perhaps, in time, it might even allow the brain a chance to “cool off” its pain response a bit.
If you are curious to learn more about central sensitization, check out this video in the blog Sunlight in Winter, whose author does a beautiful job of spreading awareness for the science behind the syndrome in patient-understandable knowledge.
2. The knowledge of the science behind central sensitization made me realize that I needed a truce with my body. And the said truce is my only hope of getting my life back.
It may not be the life I had initially planned, but if I didn’t make some kind of peace with my disorder, I would not have any kind of life at all! Getting this through my thick skull was a huge step towards acceptance for me.
This truce was not giving in to the disease, or resigning away to the illness, but simply making a conscious decision to listen to my body more. Like most things in life, it is of course easier said than done. I have struggled with it off and on, along with my faith that this is the sensible thing to do, and I am still in the process of learning how to listen well.
As a scientist, I am quite used to observing the outside word, our experimental universes. But rarely do we use ourselves as the subjects, while also trying to be the objective observer of ourselves! I have found that it can be quite difficult at first, and really easy to slip up on even after doing it for a while. But what has probably helped me the most to detach and observe myself in as unbiased a way as possible is mindfulnessmeditation. I have trained myself to keep a piece of me in my head to keep a watch over myself, my thoughts and my body. Sometimes this watchkeeper may bring to my attention my negative train of thought, or at others, remind me to relax my shoulders and fix my posture.
Many of my blog posts emanate from me tapping into this watchkeeper to see what she has observed, and then the posts are the results of my analysis on those observations. She has given me many insights into my thoughts and feelings, especially on the more unpleasant aspects of dealing with a chronic illness. I am not a believer in wishing negative thoughts and feelings away (I know from experience they don’t go anywhere, they just fester under the surface). So I decided to work through them by writing/blogging. Aside from being cathartic, I have also come to greatly appreciate the support of others in the chronic illness community, especially those of us who are also young, and face that additional stigma of “oh-but-you’re-so-young,-how-could-you-possibly-be-sick.” Being around others with similar conditions and associated feelings, and being able to share in their challenges validated my own.
Through my blogging experience, I also realized that being surrounded by accepting people also promotes acceptance in one’s own heart. You see that a chronic illness does not have to be the end of the world, that it is possible to fight it without killing yourself (metaphorically) in the process, and that there can be a life after chronic illness. I think all of these factors played a part in my being able to fight the denial that kept creeping up from time to time.
3. As I slowly came to terms with the idea of acceptance, I realized that not everything about my new life with FM was bad.
It’s just that the benefits in my new life aren’t always the things that are thought very highly of in our fast-paced modern society. For example, I am now a much calmer person, more patient than I used to be. But that permanently changed how my boss views me, because in academia if you’re not a highly ambitious overachiever, you might as well be nothing. But in my personal life, or even my professional life (as a teacher and a mentor), I realize the patience that I have gained has served me well. I feel, overall, more balanced in many ways than before, when I lived a lopsided workaholic world all the time. I have been able to reconnect with my husband, and feel a measure of mental peace that I never knew could be possible.
This recognition, that it’s not been all bad since FM struck, was a major leap forward towards accepting my my chronic condition.
These three major realizations, mostly arrived at through internal deliberations, were my stepping stones to a point where I could stop kidding myself that the chronic illness doesn’t exist, or that I can somehow “wish it away.” Once I had these down, the activities I described in my last post helped me work through my thoughts and feelings (many of the ones I have talked about here), which helped me inch closer every day towards embracing acceptance.
Acceptance of a chronic illness, however, is a very private matter, and can mean something different to each sufferer. So I, by no means, wish to suggest that this is a fool-proof how-to guide that should work for everyone. This is just my story. It is my hope that reading this story might trigger thoughts in someone else in a similar boat, so that they can make their own journey, taking their own private paths, towards their own personal goal of acceptance. In there, lies my satisfaction as a chronic illness blogger.
The journey towards acceptance of a chronic illness is a long one, with shifting goalposts, and an uncertain finish line. It takes strength and persistence to overcome the loss of a life that could have been, and embrace a new one. All of us who have been battling chronic illnesses are full of stories of how we conquer it everyday to find our center of gravity and come to terms with a difficult situation.
In the last few weeks, I have deliberated much on how I have come to accept that a chronic illness invades my body. Yet, in accepting the illness, I have not allowed it consume me, refusing to give in to a “fibromyalgiac” identity. It may be one of my identities, but I am made of so much more that FM cannot extinguish within me! Accepting that dichotomy within me has been key in being able to nurture my health as well as my other interests that make up the rest of me.
To wrap up my Acceptance series of articles, then, today I talk about what helped me achieve a state of acceptance on some consistent basis, and some of the things that helped me embrace my new life with fibromyalgia.
1. Education:It can be hard to accept a strange, unfamiliar diagnosis as the illness that we suffer from. Therefore once I had a name, a diagnosis, I could look up, I tried to learn as much as possible about my condition. As a scientist, I was already trained in reading primary literature. So I hit the medical journals, and sought out the latest, most definitive research on fibromyalgia, in an effort to know all there is know about the condition. This helped me make sense of the myriad symptoms of fibromyalgia, which in turn informed the problem-solving approach that is central to my definition of acceptance. It also helped me feel less crazy, and like I had more of a ground to stand on against the “doubters.”
2. Writing/Blogging: It is difficult to accept a relatively rare condition when you feel all alone, dealing with it by yourself, surrounded by people who think you should probably just be able to suck it up. The graduate school environment, in particular, promotes stoicism, which is likely to encourage you to deny anything is wrong at all. This, of course, is a recipe for disaster. Through my blog, I have been able to make friends who share similar struggles, whom I can learn from and support in return, and around whom I can allow myself to admit my “true” state of being. Out here in the blogosphere, I do not have to pretend to be OK when I am really not. I have also found writing to be a cathartic experience in itself. It helps me sort my thoughts out, make sense of what is going on in my head, and create a journal of experiences that occasionally helps me see how far I have come. The blog creates a space which encourages me to acknowledge the struggles that come with the illness, and find ways to overcome them – both of which are, again, central to my definition of acceptance.
3. Focusing on something other than myself:Over time, this has taken various forms, such as helping other people, and immersing myself in a process, such as art or science or writing. It makes me feel connected with something bigger than myself (e.g. art, humanity, learning), which then helps me feel like there is a place for me in this world, even with my illness and all. Especially in helping other people, I find I am able to cultivate more compassion, not only towards others but also towards myself. It refocuses attention away from myself, so my own problems do not consume me. Also, it helps me see that many others have similar or worse problems than my own. In recognizing that, I have felt less alone, less self pity, and more self-compassion. Altogether, it has helped me place myself and my problems in perspective, which in turn has aided in accepting the new life that I have been dealt.
4. Meditation: I have had particular success with two types of meditation: (1) Mindfulness; and (2) Visual Imagery. Each in its own way has helped to bring a kind of clarity in my mind, without which it would have been really difficult for me to deal with my condition. Meditation helped me detach from myself at times, focus and break through the pain on others, so that together, they have provided some perspective on my new life and its new issues. It helped me see my problems as tractable ones, and promoted a kind of adaptiveness, that I believe is key to being able to accept any new (and less than welcome) situation.
5. Seeking the many levels of my mind:We all have the capability of living many levels in our heads. We are, in one sense, our thoughts, which are akin to a film playing on a movie screen. In observing our thoughts, we watch this film. And in being able to change our thoughts, we play the part of the one controlling the projector who determines what film to play. Through cultivating mindfulness into my life, I have come to identify with many parts of myself. There is one part of me that is in pain, another who is observing me experiencing the pain, a third who is controlling what I think or feel regarding the pain, so on and so forth. This exercise has been instrumental in me being able to identify myself as being more just than my illness, which was crucial for me to be able to accept my problems without feeling resigned towards them.
In tandem with each other, these five “activities” really helped me come to terms with the battle with a chronic illness. They helped me make sense of what I was feeling physically and emotionally. In being able to see my problems in perspective, and as tractable, manageable issues, I felt I could give myself permission to accept that indeed the problems existed, and that I am not giving up the fight by accepting their existence. Indeed, by acknowledging my chronic condition, and its associated limitations, I am finally opening myself up to finding new ways of overcoming those limitations.
All in all, being able to accept my current life has brought with it a level of internal peace and happiness that was missing from my life before. I know that happiness and acceptance have very personal meanings for each person dealing with their own situation. Even so, I hope that my musings can help somebody, who is struggling and is in search of peace, trigger some thoughts of their on these issues, which helps them find their version of peace they seek.
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?
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.
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!
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.
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.
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.
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!
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.
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.
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.!
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.
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”!
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.
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.
. . . 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)
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!