Reimagining your Professional Identity as a Scientist with Chronic Illness – Part II

Since around the time I was planning my graduation, I had been giving a lot of thought about how I can be a scientist without pushing my body farther than it can realistically go. I was lucky that I could still work and that meant a lot to me. I wanted to keep it that way instead of sending myself down a bad spiral with a workload I could not handle. But I found it terribly hard to extricate myself from the “academic conditioning” that academia is the only way to go for a Ph.D.

From my internal deliberations then, aimed at redefining my professional identity, was born this series of posts. At a time when I felt lost, not seeing a way forward for myself if I did not continue on the path I was already on, this series of steps helped me devise a new direction for myself.

While I hope it will be helpful for other scientists/grad students seeking a path outside of academia as well, this post is not only for them. Too many of us spoonies are forced to relinquish existing careers we cannot handle anymore. I hope this post is also helpful for them who may be wondering where they could possibly go if they quit a job they closely identify with.

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The path “least trodden” is the path forged for oneself by one alone.

In Part I of this series, I discussed Step 1, getting over the guilt of leaving academia, before I could even start thinking about other paths. The guilt was on many levels, but I mostly felt bad about how I was another statistic adding to the list of chronically ill people leaving academic science, instead of standing up to it and perhaps helping to make the road easier for future grad students like me.

But I quickly learned that you cannot educate everybody — even when you talk the science behind your condition to other scientists. I also learned that my first responsibility is to always to myself; I cannot do anything for others if I cannot take care of me first. And if I wanted to continue sciencing, I would have to find a fairer path than the one I was on.

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Allow yourself the freedom to fly free

Once I got that, I was able to move on to the three core steps that helped me figure out where I could take my life after academia.

Step 2. Understanding what you enjoy about your current work

Assuming you enjoy doing what you currently do, figure out what exactly is it about the job that you like. Let’s call these “transferrable interests.

For me, the intellectual aspect of the job was perhaps the most rewarding, followed by the thought that my work might benefit people in some way some day. I also enjoyed the hands-on “bench work,” i.e. all the pipetting, playing with test tubes and chemical solutions, and sticking them in fancy machines that use mind-blowing technology. Regardless of the frustrations inherent in “bench work,” I found joy in the process itself, regardless of the results (though a successful result always added to the joy!). And finally, I enjoyed sharing knowledge with others (through talks/seminars) and helping a new generation find the joy in science (through my role as a teacher).

Figuring out what about your day to day activities bring you happiness is a great place to start, because it lays the foundation for the kinds of jobs to seek. Ideally, you would then look for jobs where you can still engage in as many of these interests as possible.

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Look within to find your own daily source of joy

Step 3. Recognizing what you are good at in what you do

This is the part about “transferrable skills.” Many grad students (including myself) get so absorbed in the day to day workings of the lab, that we start to feel like our skill is the entire package. But if we look at the components of the package, we realize that the individual skills could be applied to other things. For example, nearly all grad students probably have the at least some of the following skills by the time they finish grad school:

  • Creative as well as critical thinking
  • Troubleshooting skills (i.e. ability to figure out what’s wrong and how to fix it)
  • Research skills (i.e. the ability to sift through a haystack to find the needle)
  • Solid argumentation skills (i.e. being able to back up what you say with facts)
  • Ability to clearly communicate verbally and in written medium
  • Ability to communicate to both specialized and non-specialized audiences
  • Experience with Microsoft Office (or equivalent) products, other softwares (e.g. statistical or image manipulation tools), and/or technical skills (e.g. programming)
  • Great organization and project management skills
  • Tenacity to see both short- and long-term projects through to the end, regardless of their complexity

Recognizing the specific things that you are good at helps in two ways: (1) it adds to your confidence that all that time you spent in grad school wasn’t wasted time even if you cannot continue in your planned path; and (2) it helps you start practically looking for where you can now apply your skills, and get paid for doing what you are good at!

Once I overlaid the jobs that that matched both my skills as well as interests, I knew I finally had ball rolling!

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Recognize your own blossoms

Step 4. Realizing what #2 and #3 tell you about you

Understanding your transferrable interests and skills are great, and they might help find job options that sound good on paper — but they alone may not serve you well in finding a new fulfilling job until you understand what your interests and skills tell you about your core values and motivations.

For instance, I would describe myself as a scientist with a heart; who sees science as way of bettering the world and helping humanity. I am not someone who views science as a way of making money or how to snag the next big patent or paper. I am also not a science snob; I enjoy talking science with other scientists and non-scientists alike. More than scientific facts, I lay emphasis on the scientific process, which I like to talk about with people, to help them make informed decisions. But I also recognize that not all things can be done “scientifically;” some things are just based on how you feel, and I don’t discount the validity of that approach, when appropriate, either.

Realizing the motivations that drive our interests and motivate us to master the skill sets that we are good at help to rule out certain jobs that may involve doing the things we like but does not fit with our overall personality.

For example, I could not see myself working in a place where the primary motivation for doing science was profit. (I have nothing against making money, as long as that is not the core goal of the science I am doing.) Knowing this helped me rule out certain options (e.g. the pharmaceutical industry), and helped me draw up a shortlist of potential job options.

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When you find yourself considering an unlikely branch, return to your roots to see if that’s where you belong.

In the third and final segment of this series, I will discuss the last two steps in my process, as I used my reflections to draw up a list of potential career paths and the final considerations I made, especially regarding my health, before moving forward.

But these are the core three steps that I used to actively decondition myself from thinking that academia is all there is for me. Breaking down my job into its component parts and analyzing what it all meant to me helped me realize there may even be potentially better directions for me out there than what academia had to offer!

At all major forks in life, I feel like some introspection is key to helping us overcome the hurdles and find a reasonable solution. But it can feel like we are lost in a sea of confusion when we are faced with losing a career path we closely identified with. In times like that, I hope these steps can help one understand why the job means as much as to them as it does, and then apply those core motivations in a more health-friendly direction. Stay tuned for more on that in the next post.

Love,

Fibronacci

Reimagining your Professional Identity as a Scientist with Chronic Illness – Part I

In my last post, comparing my experience being a scientist in government vs. academia, I had promised to talk a bit about how I got there. Admittedly, it’s a bit surreal to me, because this time last year, I was practically despairing that I might not have any career at all, forget one in science. Having experienced the pressures of academia first hand, I knew it wouldn’t be conducive to my health to continue in it. But it was immensely daunting to seek a life after academia as a scientist with a chronic illness.

In this series of posts, I will discuss my story — it has been a long, and in many ways, is an ongoing journey to redefine my identity. But before I could do anything else, I first had to assuage my feelings of guilt for wanting something different out of my life in the first place.

Step 1. Overcoming feelings of guilt and loss.

Ever since I joined my lab, it was made clear in no uncertain terms that I was being trained for an academic career. From the boss’ point of view, that’s what a graduate program is designed to do. It’s an apprenticeship model, where your mentor trains you in the arts and crafts of the trade, so you carry their mark forward as you grow in the field. That is your job, and your responsibility.

So when my body couldn’t handle double the full-time workload that is expected of the field (I was probably working under 40 hours at the time trying to get my health back in some sort of order), I was immediately relegated to the side. Once a promising student, I was now a waste of time; a wayward kid; a lost cause. And I internalized some of that at first, and felt guilty for letting my advisor down. I knew he had high hopes of me, and I felt guilty for not being able to live up to it.

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Guilt is a fire that scorches the soul

But there was another kind of guilt at play, one that hit at my core. Academia is still a very male-dominated field; I felt I once had the potential and motivation to add to the roster of successful women in academia. But there are even fewer disabled and chronically ill scientists in the field. We can be ostracized at best and actively discriminated against at worst. So we hide our disabilities, afraid to stand up to those who look down upon us for fear of ruining our future prospects.

I felt like I should try to make it as a successful academic scientist, even more so now that I had fibromyalgia, so no one could doubt our scientific acumen! Once at a stable point in my academic career, I could raise awareness for our cause without fear of retaliation; mentor more students with disabilities; try to change the culture in academia that sees us as lesser mortals. I felt like I had the responsibility to stand up to the establishment that had looked down on me. Walking away from it felt like walking away from a battle, like they had defeated me and my spirit. And I felt guilty for giving up on all the future disabled or chronically ill grad students I might have been able to help.

It took me a long a time to see that these feelings of guilt were misplaced. It is my life and my body, and my first responsibility is always to myself. To keep myself healthy, and active, and in a mental state to be able to enjoy life. It is my responsibility to find a fruitful direction for my own life, one that suits my current needs.

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At the edge of all light

To feel beholden to others’ expectations of me is only a noose I held around my own neck. I realized that is never how I lived my life so far, and it would be a mistake to start now. As far as thinking of my own past dreams or future hopes are concerned, they only serve to make me feel worse. They do no practical good in helping me carve a way forward.

I also realized that advocating career over self-care is hardly being a good role model! Especially with a chronic illness like fibromyalgia! How can I help other people if I cannot even help myself? Perhaps my limited energy is best spent raising a candle to the issues from the outside, rather than burning in the fires on the inside. It was time to let go of my misguided sense of pride.

The first step in any journey is often the hardest to take, but also is the most important for it sets you on a new course. Once I was able to get over the feelings of guilt over leaving the career I strove for for so many years, I felt like a fog had just cleared from my view. By the time I graduated, that was perhaps my single biggest accomplishment; bigger, even, that the Ph.D. And when I finally could see the different directions my career could possibly go in, I felt the glow of a new hope warming a heart grown cold and scared.

In the next post(s), I will talk about the specific steps I used to retrain my brain to think of new possibilities and new directions. I know when I was seeking some of this information, I had none I could turn to. So I hope that this series of posts will reach future grad students and scientists in a similar boat, and I hope they find some value in it.

Gentle hugs,

Fibronacci

Working with a Chronic Illness: Scientist in Government vs. Academia

As I was getting close to finishing graduate school, I was contemplating many career directions. I liked the flexibility academia offered, but the labor expectations of a postdoctoral appointment made that a difficult option for me with fibromyalgia. So I looked towards private industry (pharmaceuticals, hospitals, genetic testing companies, etc.) as well as science jobs in government. I knew they would be less flexible but also come with a saner work load. And I wrote about my thoughts regarding whether a highly flexible vs. a more routine-oriented job might better for a fibromyalgiac such as I in Part I under this title.

Finally, I chose a job as an environmental health scientist in government. And nearly every day, I thank my lucky stars for getting it! After 3 months of employment, I am absolutely loving my job (except for the hard bits here and there). Like everything, it has its pros and cons over the “standard” post-PhD academic route. And I felt it deserved a fair comparison for other grad students with chronic illnesses who may be considering non-academic options. So here’s my take on “sciencing” in an academic lab vs. on a government computer!

1. I do miss the serious flexibility academia offers.

Working in a relatively respectable position, I actually still have a reasonable degree of flexibility. Nobody would fuss if I came in at 9 one morning, instead of 8.30, or took a slightly longer lunch break, and just made up for it in the evening. But nothing quite offers the extreme flexibility that is unique to academia. It takes time to build up the leave time you need in order to comfortably make doctor’s appointments or other life commitments that may take longer than a couple of hours. Accruing leave at about 1 day per month means having to push through many flares initially, until sufficient leave time is built up.

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The sad reality of my flexibility dreams, captured perfectly (as always) by Jorge Cham!

2. I start work earlier, which can be painful (literally and figuratively).

Many of us have our “best hours” later in the day – I certainly do! – and having to start moving too soon before my bones and muscles have had a chance to thaw can be a struggle in the morning. As a senior grad student, I was able to work 10 AM to 6 or 7 PM, because I called my own shots. As a government employee, I feel the earlier hours very sorely on days when it is especially hard for me to get out of bed.

Realistically, however, if I took  a postdoc position, I would not have been able to exercise a 10-to-6 workday anyhow. Most postdocs are expected to work anywhere from 60-80 hours, under an intense amount of pressure. But on days when I am seriously flaring and desperately needing a bed to lay down on, I really miss the ability to work from home or just lay on the couch for 15 minutes while some test tube is incubating.

3. I really like the shorter hours though!

It is much easier to pace yourself when your body knows what to expect from each day. This job definitely offers that regularity of schedule. However, like with any transition, it is taking me a bit of time to find that new pace. Still, coming from an environment where the trade-off for flexibility is working till 1 AM in the morning, it was an interesting experience to leave every afternoon while there’s still some daylight! And now that my husband is all better, I really appreciate all the rest time.

4. You are actually off on government holidays and weekends!

This was a new experience for me too, as I typically worked through all holidays and many weekends as a graduate student (as most academics do). But here, we get several long weekends a year, and you are expected to NOT work during that time! These extra off-days often come right around the time I really start to need an extra rest day, making them very welcome and much appreciated! And I found out long ago, that weekend rest time is absolutely essential for me to continue working period. So it is really nice to have this guilt-free time off!

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Not anymore!

The sum of #3 and #4 is that this job comes with a reduced anxiety factor for me.

While I was in academia, I felt like I was always carrying a huge weight of unfulfilled expectations. I knew what I was expected to do, and that I was not able to do it. I was well on my way to completing the Ph.D. and had a history of being a dedicated worker, so I was not kicked out of grad school. But there was always the latent anxiety from knowing you are not quite the grad student your advisor may have hoped for.

Here, I finally felt that weight lifted off my shoulders. My boss is amazing, and she made it clear that I surpassed her expectations. And she is more than happy with what I am doing at the pace that I am doing it in. This has resulted in much reduced anxiety, and had added to my career satisfaction.

5. There is less physical activity as a data scientist than in the lab.

This could go either way. Sitting too long can cause extra pain and stiffness, so it’s good to move around time to time. But for me, the pain in my legs went down (in general) after I took this job! I imagine I must have been overworking them at the lab, likely by standing or walking more than my body could reasonably muster, and I never realized that until I got out of that environment for a while.

6. Government is more slow-moving and bureaucratic than academia.

Which, again, has its pros and cons. You will not publish a lot of papers very quickly, but the ones you do will be meaningful and thoroughly vetted before it even reaches peer review. Instead of publishing just for the sake of it, the idea is more to publish when you have something important or meaningful to say. While the bureaucracy can be irksome at times, it is the same mechanism that allows you rights to fight your position in case of any disagreement with the boss, or say if you need to negotiate special accommodations. In academia, your boss is your master. So if s/he does not agree with you, then other routes are all but blocked for you. Here, there are clearer rules for such things that both employee and employer must abide by, so there isn’t a ridiculous power imbalance.

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There is a WHOLE new vocabulary in the “adult” outside world, that I am now learning!

All in all, this job has really been a great boon for me! I am somebody who is environmentally conscious, and actually care about the topic of environmental health. In fact, what I studied before – epigenetics – is closely linked with how the environment can affect our health! It’s just that now, instead of working on the molecular mechanistics of it, I am working on the human aspect of it. Personally, I find that much more rewarding, knowing that my work is reaching people now, instead of just the hope that it might help somebody decades from now!

So if you are a grad student, or a scientist, who is struggling with a chronic illness and looking out for various options, I would recommend staying open to government jobs. In the future, I might even do a short series on how I was able to expand my horizons regarding career options (basically, getting over the fear that my science career was over if I couldn’t make it in academia), and other potential job options for scientists with chronic illnesses. I know I searched high and low for much of this information when I needed it, and sadly, found little of it. So, it is my hope, that these posts might reach others in a similar boat as I, and help them in at least some little way!

Love,

Fibronacci

13 Tips to Simplify Daily Living with a Chronic Illness

Every day can be a struggle with a chronic illness. Even when my husband helped me with just about everything around the house, there were very few days when I didn’t feel the brunt of fibromyalgia in one way or another. Now, with him out of commission, I am feeling it even more.

I have previously written about how I managed grad school with fibromyalgia. And I am using many of the same strategies at my current job. But I have had to “rediscover” some tips to manage the daily chores in a way that eases my growing pain and fatigue now that I have to hold up the fort at home as well.

I have shared them here, hoping they may reach someone who might benefit from them.


In general:

1. Don’t be proud. (If living like a college student is a complete deal breaker for you, you might as well stop reading now!) Seriously though, many a time, it is our pride and expectations of how we should appear, how our house should look, how holidays should be conducted, that make life more difficult for us than they need to be. Try to let go of the allure of appearances, and worrying about how it looks to the neighbors. Focus only on what you need to do to get some semblance of your life back.

2. Prioritize. Start with doing the things that absolutely need doing that day (if that garbage is starting to stink, taking it out needs to be near the top of the list!). Jokes apart, with this general strategy, if you run out of energy before you finish your list, you can stop without too much concern. Let those less important things wait. Trust me, they’ll be waiting for you tomorrow. Unless your fairy godmother steps in and turns some mice into fairy-housekeepers who magically take care of the remaining chores for you! (If that happens, please give them my number!)

3. It’s OK to put off the optional activities if there’s only room for the mandatory. Sometimes the optional activities are the fun “me-time” things, like our hobbies. If so, consider replacing them with equally fun “non-activities” (binge watching Netflix, for example) that help you relax and find peace in a chaotic day. However, if you can move around some less important tasks to make room for that “me-time” activity, don’t pass up the chance!


Groceries and Meals

4. Frozen meat and vegetables. If you enjoy cooking, doing large batches once a week and freezing meals is a great idea. But, that does add to other “intensive” weekend chores, and may not be the right fit for everyone (certainly isn’t for a non-cook like me). So, I turn to frozen chicken, sausage, fish and vegetables. Many of them can be prepared within minutes in the oven, microwave or on stove-top, and they are really hard to mess up! With some careful label reading, portion control and balancing with other food groups, this is not a terribly unhealthy option either.

5. Snack healthy with fruits and nuts. This is easy for me because I love both, but they really are an excellent source of nutrients and perfect for between-meal snacking!

6. Meal delivery services (e.g. Uber Eats). When all else fails, and you simply haven’t the energy to do one more thing, meal delivery services can prevent you from starving. If available where you live, Uber Eats (or other delivery options) can be a life saver!

7. Online groceries. Several places like WalMart and Amazon (Amazon Fresh & Prime Pantry) are now allowing you to buy groceries online, and either picking them up at the store or delivering to your home. It cuts out much of the walking, reaching, bending, standing, etc. that can make grocery shopping hard on spoonies. I think Amazon is kind of expensive for this service, but I feel I am actually saving money buying a list of things I need online at WalMart and having them load the bags into my car at the store. It reduces impulsive buying because I just saw something cool at the store. Rather a neat “plus” for an already useful service!

8. Use wheels to transport groceries. A folding bag or basket on wheels (something like this, for example) can be very helpful so you don’t have to carry a heavy load of bags from your car to the home. It’s a bit more awkward to use if you have stairs to climb, but there are some “stair climbing” options too, like this one.


Hosting & Housekeeping

9. If hosting is too much trouble, take your friends out to eat. Don’t feel obligated to deal with the cleaning, decorations, table and meal preparations, and the subsequent clean-up, if that is not your thing and you know it will wipe you out. This also goes for the holidays; find creative alternative solutions so you can still spend quality time with friends and family, without tiring yourself out.

10. Make as few dirty dishes as possible. Don’t be too proud to use paper plates or just eat out of take-out boxes! Soak “adult” dishes/utensils (or use a dishwasher) for easier clean-up that requires less wrist and elbow grease.

11. Reduce frequency of housekeeping tasks. House cleaning once a week, or alternating between rooms and taking it easy might reduce how much energy is spent on a ritual task that can often take more time and energy than we anticipate (and leave us drained and hurting).

12. Focus on functionality over perfection. Practice the science of “good-enough.” That means the house may not be perfectly clean, the corners may remain dusty, actually a lot of things are probably dusty, but at least I can walk across my floor without the dirt and grit sticking to my bare foot! That’s good enough for me! My clothes are not neatly folded (in fact, if they are not hanging, they are lying in a “dump” on a shelf in my closet), but as long as I can still find what I need, I don’t bother fixing up the closet just to make it look pretty. It’s in a state of “working disorder,” which is good enough for me.

13. Break up tasks. If cleaning takes a lot out of you (as it does for me), try breaking up the different tasks on different days. Dust the books and shelves one day, vacuum or mop the other, clean the bathroom on a third. If a particular cleaning job takes more arm-power (cleaning the toilet or bathtub for example), do that on its own day when you take on fewer other intensive chores.


To be completely honest, these tips have not been enough to keep me from sliding into a flare. I have felt my symptoms worsen despite using the strategies above. However, I do feel they have made a difference. When every little bit seems to take a gargantuan effort, any bit of reprieve is appreciated.

I certainly don’t think I could manage to keep on taking care of my home as well as work full time forever, even using all the strategies I write about. But these tips have allowed me to successfully fulfill the temporary needs of my household, without needing to take at least 1-2 days off from work (that I have not even collected yet!) over a complete crash that pins me to the bed. Essentially, they have slowed my decline, and that was about all I could ask for!

So, if you or someone you know is in a similar spot, and is struggling with daily life as a fibromyalgiac, I hope these tips help them too — at least a little anyway. And if you are a fellow chronic illness warrior with more daily living tips of your own, I invite you to share them in the comments below, so others can benefit from them too!

Gentle hugs,

Fibronacci

What I Learned from my Leap of Faith

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


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

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

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

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

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

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

2. It is impossible for me to be bored.

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

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

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

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

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

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

5. I was ready for a major change.

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


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

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

Love,

Fibronacci

Temporary yet Timeless

Though I like having nice things as much as the next person, I have to admit that I am more of a sucker for experiences.

While material objects you acquire may be permanent (in the practical sense of the word), it is human nature to slowly just get used to its presence and take it for granted. And then that grand old antique grandfather clock you coveted forever until you found it on a killer deal loses its appeal, and its ability to make you happy.  Even worse, acquired things may only be temporary (like money), in which case the happiness they bring is doubly short-lived and may even be followed by some misery!

Experiences, however, are usually by nature temporary — and yet, they are timeless! Think back to a wonderful family vacation, or a funny incident that happened to you, or even a particularly interesting class you took or a memorable event you participated in. Think back to a time when you learned something new, or saw something in new light, gained a different perspective, or found a new way of looking at things which you had never considered before. Chances are, simply thinking back to the family vacation brought an image to your mind, or remembering that funny incident made you chuckle. All of these experiences were in the past, their time come and gone, activities done and over with. And yet, you carry some essence of them with you forever!

Experiences, unlike physical objects, also have the potential to teach you things and promote self-growth. This is perhaps almost more true of unpleasant experiences than pleasant ones, a chronic illness for example. I remember in Michael J. Fox’s autobiography, Lucky Man, he said getting Parkinson’s disease was one of the best things that happened to him. Until I gained some acceptance of fibromyalgia, I could never have understood what he meant. But even in dealing with what has been a far less debilitating experience than Parkinson’s, I have learned and grown so much that I am kind of glad it happened to me. Sounds strange, doesn’t it, given how much I gripe about it? But I feel like the griping and then getting over it is all a part of the experience too!

Particularly, the experience of going through a competitive grad program with FM has taught me an important lesson in life. That regardless of what others say, think or do, you’ve got to be true to yourself! Your self-worth cannot hinge on others’ (negative) evaluation of you. You cannot educate everybody, not even when you talk the science behind your condition to scientists. When you feel alone, instead of feeling dejected and lonely, use that space to spread your wings and find your own flight. Do not feel guilty if you choose to use a particularly good day to turn your back on the world and enjoy it simply for yourself! There are too few of those in our lives to waste them on others’ expectations of how you should be spending them, rather than how you want to be spending them.

Perhaps all these thoughts combined made me particularly fond of the featured image, which I clicked on a recent trip to the local zoo. Here’s a pelican who doesn’t give a hoot about the world, he’s without a care except to just make the most of a beautiful day! The photo, a bit overexposed, is perhaps technically flawed, but you can really feel the sun on his back, the splash of the cool water, and his ecstasy of motion.

It is a reminder to live life unabashed and cherish small moments of pleasure.

A reminder to not let imperfections tarnish the timeless beauty of the experiences.

Love,

Fibronacci

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

I love painting sunsets.

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

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

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

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

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

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

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

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

recycled-art
Reimagine the possibilities!

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

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

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

Love,

Fibronacci

 

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

In the Grand Scale of Things

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.

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Do you see that little fuzzy ball on the bottom right? I’ve no clue what it is but it’s so cute!

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!

Gentle hugs,

Fibronacci

Working with a Chronic Illness: Flexibility vs. Structure and Routine

In my last post about how I did graduate school with fibromyalgia, I touched on a point about being careful with how flexible a “job” grad school can be, which has its plusses, but can also be a double-edged sword.

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 goingAGAIN?!?!?!“). All in all, I just don’t see pattern working out so well.

98_Going Round and Round
Going Round and Round
(11X14, oil on canvas)

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!

Love,

Fibronacci

How I did Graduate School with Fibromyalgia

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.

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When you feel trapped . . . but know you’re capable of flight

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!

iceberg_2
How fibromyalgia helped me be a better mentor

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!

86_good-morning
As any self-respecting scientist will tell you, the solution to brain fog is of course COFFEE! (Do not believe them blindly)

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.

title_ _Brain-body problem_ - originally published 10_1_2010 - Jorge ___
The sub-conscious can be a good motivator, but try not to let it bully you!

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.

Sleep
The secret to avoiding this vicious cycle is to use flexibility well and not procrastinate! And, of course, treat your body well!

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.

Cheers to all my fellow-fighters!

Love,

Fibronacci