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!
Earlier this month, I officially graduated with a Ph.D. in molecular genetics.
It is both relieving and terrifying to have graduated, finally having no set obligations. After the months of intense flares that I was able to tame not all that long ago, I have decided to take a break before moving on to another job. Alas, I still have papers to finish in the meantime, and my future to contemplate, so it will be interesting to see how this break turns out!
But now that I have finally graduated, I feel a bit more confident writing this piece, a list of 10 things that helped me do graduate school with fibromyalgia.
It is sort of a “Part II” of my Reflections on Graduate School, but with more practical information regarding the management of fibromyalgia, so I hope that it helps a few more of us chronic illness fighters navigate through the quagmire of graduate school. And because many of these suggestions apply in general as well, they may as well be my 10 tips for managing fibromyalgia!
1. Prioritize – With a chronic illness, you may not be able to do everything you would like. So prioritize what needs to be done first, what is most urgent, and do that first. Work your way down the list of less important things (aka, things that can wait till tomorrow). That way, if you run out of your energy aliquot before getting them done, you do not have to push yourself to do it anyway.
2. Get help when needed (undergrads/assistants) – It can often be difficult to admit you need help, and then put forth the effort to train people under you, and supervise their work. But with the right, reliable person, this can be a lifesaver! It takes some work to switch from the “doing” mode to the “managing/supervising/mentoring” mode, but those are extra skills you have the opportunity to learn! And it is win-win on both sides: your student learns some new stuff, maybe even feels a taste of independent science (depending on their level of experience), and you get to rest your body a bit, while still working your brain!
3. Make your work area as comfortable as possible – If you spend a lot of time at your desk, it helps to create an ergonomic workstation – which, of course, is a dream on a grad student salary! So I have a pillow on my high-back office chair (both hand-me-downs), and a heating pad against my back, to help me sit “without” pain. I also have a small box under my desk, and a blanket. The blanket is for the extra chilly-feet days. As for the box, I often put my feet up on it so I can recline, and be comfortable at my desk. I realize it is not necessarily the best posture at all times, but (perhaps unfortunately) in my mind, pain relief trumps all else – and it really feels so good to stretch my legs out comfortably on the box! I also have a TENS therapy unit at work. I am not 100% sold on TENS therapy, and it looks ridiculous to be twitching or jerking if someone walks in, but I’ll try anything when I’m desperate! A friend also let me have an ergoBeads cushion to rest my wrists while typing. I am not frequently wracked with wrist pain, but I am grateful for anything that may prevent it!
4. Seek working solutions for cognitive problems – I am perfectly aware how cognitive dysfunction can get in the way of the smartest of people. Unfortunately, brain fog has struck me at some of the most inopportune times as well. I do not have a solution for every time this happens, but I have written an article before on how to manage brain fog so you retain sufficient brain function on a day-to-day basis. I hope that provides some ideas on this point!
5. Slow down – One way of minimizing brain fog is to slow down and take it at your own pace. I know that in graduate school we are conditioned to feel guilty for slowing down, and not all professors even tolerate it enough to let us continue. I was very lucky by that measure. I had a project that could sit in the freezer overnight (or even a few days) if needed, and a prof who did not kick me out for doing 10 AM to 6.00-7.00 PM days. I am ashamed to admit that for about a year, when I was on physical therapy, I worked part-time (<8 hours) two days a week, though I tried to make it up sometimes over the weekends whenever I could. I don’t think my boss has been too happy about it necessarily, but I have tried to be as efficient as possible during that time, and finished all my responsibilities on time. I feel like slowing down was my #1 key to even continuing in graduate school, though I frequently worried about coming off as “lazy” or “unmotivated.” But the truth is, my motivation to continue doing science is what convinced me to keep the reduced hours. The alternative was to not do it at all. I wrote more about this topic in a previous post whose title says it all I think: Slow and steady stay in the race.
6. Use flexibility well – Flexibility is a double-edged sword. If you are working independently, and do not have an overbearing boss, academia offers more flexibility than any other situation I can imagine. This is great on those really bad days when you absolutely need to stay in bed. Assuming your work can wait (and I realize not all work can), the flexibility means that you can rest now, and just catch up over the weekend, if needed. However, flexibility can also lead one to keep odd hours, or no set schedule at all from one day to the next. This can be problematic as your body does not what to expect when. I feel like keeping a steady routine was really key to me getting a handle on my “new normal”, so use the flexibility graduate school affords with care.
7. Do not procrastinate – The other issue with flexibility is that it becomes really easy to procrastinate! This is usually a bad idea, in my opinion. Almost invariably, as the stress of an approaching deadline builds, I feel my FM symptoms worsen. If at that time, I also need to do a bulk of the work that I hadn’t done before, that robs me of the rest time that my body needs. Also, it is more stressful if you know you have a lot of work to finish in very little time. So if your symptoms react to stress, try not to procrastinate!
8. Sleep well before important days – Lack of sleep or poor sleep often makes everything worse for me! I hurt more, am tired more, and can think less. So if there is an important day – such an exam, meeting or interview – I try to get good sleep the night before! I have found zolpidem (Ambien) to be an excellent aid when all else (hot baths, herbal teas/supplements, etc.) fail.
9. Practice and prepare, but be OK with making mistakes – This is as true when you are teaching, as when you may be giving talks and presentations. Despite practicing a lot before my dissertation defense, I fumbled more times during my talk than I would have liked. Though in retrospect, and from the audience’s perspective, it was not such a big deal, it sort of wounded my perfectionist’s soul. And yet, each time, I picked up where I fell, shrugged off a little and moved on. When I have made mistakes while teaching classes, I have admitted it, and then turned it into a learning opportunity. I feel like fibromyalgia has taught me more about being OK with making mistakes than anything else ever – enough so I now call myself a “recovering perfectionist”!
10. Try not to schedule back-to-back classes– This one especially holds if teaching long classes, such as 3-hour-long laboratory courses, when you are on your feet and active the whole time. It is also one of those things where it just depends on the person! If it works better for you to schedule it all on the same day, and just have one miserable day a week, instead of two, then ignore this point. But if you are like me, and that one day casts a shadow over the entire week, then it may not be worth it. I have found it easier to split it up over multiple days, so I am not under too much strain on any one.
Graduate school (in an academic institution, at least) is interesting because you are part employee and part student. So I hope that my management tactics has some relevance not just in graduate school, but school in general as well as the workplace, and not just for fibromyalgia either, but other chronic illnesses as well.
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.
“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?
I think of acceptanceas lying on a continuum between denial and resignation:
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 denialthat 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.
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.
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:
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!
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!
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.
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!
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.!