When you Keep Hitting a Rock

Sometimes it is hard to feel like you are making any progress at all, no matter how hard you try. Every time I think I have something figured out, it turns out that I had missed taking something else into account, so I am really back to square one. You would think as a scientist, I would be more accepting of failure and be able to gallantly pick up the pieces and move on and try again. But here’s a little secret about our lot – we’re human too!

I have heard it told many times that grad school can be a hard and uncertain place. To be honest, I had never really thought of it that way. I had entered my current lab as an undergraduate and dove right into the research because I found it fun and interesting. Over time, I had worked on many different projects and enjoyed learning about a variety of topics and many different techniques. I never really worried too much about “what’s next” because I always assumed I am going to continue having fun the way I am now, though perhaps in a different location and doing different things.

Yet now, I feel rather uncertain as I edge into my final year. My life has been in a flux recently and I feel like I cannot devote as much time as I should be towards my research. I have several publications but much of that work was done before I developed fibromyalgia. There is no way I can keep up that level of productivity with my current hours. I cannot imagine who would want to give me a postdoc job (something I had always banked on) and so I am having to look towards other directions for jobs for recent Ph.D.s. That is an scary outfield period for anyone trained only to find a job in academia; it is doubly hard for somebody who is also juggling a chronic illness and wondering whether the job description will fit their needs, when and how to disclose their problem, what types of accommodations to ask for and when and how, etc. Somewhere in the back of my mind though, I am still hoping I can do a postdoc with an advisor who will be willing to let me work at my pace, so I don’t have to jeopardize my health for my career – something I am convinced is totally NOT worth it! But my hopes are low on that one.

On the health front, I feel like I am shooting completely in the dark. Every time I hit or miss, I take a note of that and make a mental map of the place that I am in. Trouble is, I am never quite in the same place and a target I hit once may never get hit again. I try the scientific method when deciding what works and what doesn’t, or what may be the best approaches to tackle a flare with, based on published literature and personal experiences. But keeping an objective view of yourself as the subject while also being the observing scientist is hard on the best of days. It is made doubly difficult when your brain goes foggy and a storm descends on your senses.

All of this brings me to the featured image, my 11X14 oil painting titled “Inner Turmoil.” I painted it some time ago when I felt like the wave that is doomed to crash on the rock surface on a dark and stormy night, yet one that insists on doing it with flare!

Along with portraying thoughts I could not put in words at the time, it also made me ask the quintessential question of why the wave doesn’t give up. I suppose the simple answer is that it simply cannot! It is not its own boss, it is governed by the gravitational forces of the earth and moon. And I think we are all somewhat like that. There is a part of us that stops us from ever giving up. Graduate students and chronic illness fighters are both known to be a resilient lot. We have to be I suppose! And so we keep chugging along and keep hitting that rock, chipping away at it a little at a time, hoping that one day we will be able to wear it down and flow masterfully over it.

Love,

Fibronacci

P.S. A huge thank you to my dear friend S.G.B. for providing a lovely home to my painting. I hope the painting sings for her the same tune of resilience in the face of all odds as it is does for me.

 

The Spring of Joy

A few months ago, I took an online course called A Life of Happiness and Fulfillment, which (perhaps ironically) was taught by a business school professor. As a person who thrives on cognitive therapy, I thought this was one of the best decisions of my life.

One of the “habits of the highly happy” (as Dr. Raj puts it), is simply making the choice to be happy. Somehow that made an odd kind of sense to me. Happiness is, after all, a state of mind. You cannot be smiley-happy or excited-happy all the time, but unless you are in the absolute deep dark pit of depression (and I have been there before), there is probably a little spring of joy lurking somewhere just underneath your conscious judgement. All you have to do is choose to find it and then drink from it!

Today is one of those days when I need to consciously remind myself to look for that hidden spring. On days when it seems the farthest, it may be closer than you think. For instance, with Spring in full bloom, there is so much beauty just outside the building I work in! All I have to do is choose to really see it instead of just walk by it everyday and never quite notice my surroundings. The simple act of living in the moment can bring much joy with it just by itself. When I start to wonder what the point of it all is, the grand oaks remind me that perhaps there doesn’t need to be a point. They have simply existed through droughts and hurricanes for a century and a half or more! Beauty exists in its own right and for its own purpose, as does perhaps life itself. There need not be a rhyme or reason to find joy in the moment. The moment itself might be your spring of joy!

Love,

Fibronacci

A Tale of Turtles

After a night of poor sleep, and driving around all morning, my brain is about as murky as the water these turtles are swimming in. I start a new aquatic therapy program next week that I was evaluated for today by a physical therapist. As usual, after all the prodding and poking, I am worse now than how I started off (which wasn’t so great today to begin with).

Incidentally, I also felt like a deplorable hypochondriac today looking at an image of the human body trying to click on “pain areas” and trying to describe the type and intensity of my pain. I felt like all the boxes applied to me at some point or another! I was somewhat embarrassed though, so we decided to go with the major/focal areas. It was kind of exciting and depressing at the same time to think that 3/10 is the best pain management score we can aim for even for the most basic tasks like standing to teach (granted, that’s like ~3 hours at a time) or doing stairs or working at a computer or just washing my hair (again, granted, I do have a LOT of hair)!

I hate that I am going to have to miss another day of work but I needed the rest desperately today. What is it about us graduate students feeling so guilty about taking time off for ourselves?? I am sure there are other ways of making our lives productive (even scientifically productive) without always necessarily working on our thesis project all the time. But then the thesis is our baby, and who doesn’t feel guilty about neglecting their baby? (Whether or not it is healthy to make your thesis project your baby is a whole another discussion and I am not even going to go there!)

I need to keep reminding myself that just like a mom who does not hover over their child 24X7 is not a “lazy mom,” I am not a “lazy graduate student” for taking a day off to recover my strength. Yet I know that that is not a popular sentiment in academia. As understanding as my advisor can be regarding my situation, even he gets frustrated with my recent slowness and absence. I cannot blame him for that – sometimes I feel exactly the same way about myself! At least, he has enough faith in my ability to do science to allow me to complete my Ph.D. at my current pace. And for that, I will always be grateful.

Love,

Fibronacci

The Whirlwind in My Brain

Most of us with chronic illnesses have our own coping mechanisms. I rely heavily on visual imagery, meditation and art therapy. And they are not all exclusive of each other.

Case in point: the featured image. This is one of my original oils on a 11X14 canvas, titled “In the Darkest Hour Before Dawn.”

The image came to me as I was trying to meditate and visualize my feelings of pain, loss of control, exhaustion, frustration and a desire for peace. Being able to paint it later (much later!) felt almost like a release! It can be so difficult to focus when the pain is overpowering you, kind of like you are stuck in a whirlwind that is inside your brain. Being able to make a tangible image out of it felt oddly empowering.

Love,

Fibronacci

P.S. Just for full disclosure, I am hugely inspired Vincent Van Gogh!

The $10 Gift Card

That’s just what “good days” are – a $10 gift card!

Don’t those gift cards feel great to have? You think you’re gonna save so much money! But we all know, somewhere in the back of our minds, that those gift cards are only designed to get us in the store. Which they do. Then you see a dozen things that you just need to have. I mean, how did you live without them for so long?? So you get them, and keep telling yourself you have ten extra dollars on hand, so it’s all good! Then you get to the check-out counter, and the total is $22.95. That’s your $10 gift card, plus the $10 in your daily checking account, and $0.95 from your savings.

How did that even happen???

Truth is, it happens a lot! Happened to me just yesterday in fact. All the sedatives in my system had put me out and I finally got a good night’s sleep. I woke up feeling great in the morning (as great as it gets these days anyway)! So I decided to put up the laundry before heading for work. It doesn’t sound like much, but it involved carrying/dragging a heavy basket and a lot of bending back and forth – not something I am often in a position to undertake. But yesterday I had the $10 gift card so I could help my husband out with the chores! Then I went to work and did a lot of pipetting (as molecular biologists are wont to do). In all fairness, I get did a lot done and got the data I have been trying to get for a month now. Graded some papers, entered some grades, sent off a few emails, sat through a seminar, all with almost no breaks – oh I felt great! If only for that one day, I was back to my regular level of productivity!

And then it hit me. All of a sudden I got up, felt sick and dizzy, and had to collapse back down to my chair. I became cognizant of a gnawing ache. All that pipetting was making the pseudo-neuropathy in my arms worse for a while but I had been ignoring it. Now my nerves stung and muscles ached with a vengeance. I quickly turned to my heating pad, and eventually towards my painkillers, and had to ask a friend/colleague to carry one of my heavier bags to the car. The rest of the evening was spent largely collapsed in bed under a heating blanket.

On days like that, you wonder if that $10 gift card was worth it. You didn’t save any money at all, and maybe even spent more than you had. But “healing” in the context of a chronic illness is not just a physical process. In fact, you never heal physically (that’s why it’s called chronic) but you can reduce the impact your illness has on you. That impact is in equal parts physical and mental/emotional. I have always been a go-getter about nearly everything and the effect fibromyalgia was having on my productivity always did bother me. So if only for one day, I felt like my old self, and got the work done that I felt I needed to do, I feel like it was probably worth it. When constantly fighting a chronic illness, it becomes easy to think that you have become enslaved by your illness. For one day, I was in charge and not my illness. And that’s a good feeling worth holding on to!

Love,

Fibronacci

 

I DON’T LOOK SICK

A very telling post, reblogged from LifeAsASpoonie, one that I can relate to more than I would care to!! But hey, that’s life! I am sure a lot of others probably have it a lot worse than me, so I don’t mean to complain. But kindness and understanding towards others goes a long way . . . and I guess that includes not saying things like “you don’t look sick” to those of us with chronic invisible illnesses.

Behind The Scenes - Life as a Spoonie

Saw this – Had to re-post

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Wish I could credit whomever created it.

If anyone knows – Please let me know

LifeAsASpoonie

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The Liebster Award

liebster-award

Can you imagine my surprise to have been nominated for the Liebster Award barely a couple of weeks into starting my blog?? Many many thanks to Life as a Spoonie for the kind nomination, and also for the wonderful blog! It is a refreshingly honest, unadulterated view into the true feelings of a chronically ill person.

This award has some “chain mail” set of rules:

  • The award goes to new bloggers (blogging for less than 2 years and have less than 1000 followers)
  • When you are nominated, display the badge, thank the person who nominated you and post a link to their blog from your page
  • Answer 11 questions about yourself
  • Nominate up to 11 other bloggers for the award
  • Ask your own set of 11 questions for the bloggers you nominate
  • List the rules in your blog, and provide the nominees with a link to it so they can learn more about it

Here are the answers to the questions I was asked:

Tell us 1 piece of odd info about you.

Although I am a logical adult with black belt in karate and generally not afraid of much, the bathroom and closet doors (overlooking the bed) MUST be closed at night. Also, the lights in there MUST be off. The little gleam of light at the slit at the bottom of the doors somehow reminds of the gleam of an alien ship. All I can figure is I must have repressed (wiped out??) memories of alien abduction. Yes, I know it’s a logical improbability – that’s why it’s “odd”!

If you could live anywhere, where would that be?

A tropical island would be amazing… like Nevis or the Bahamas. Wouldn’t hurt to have a mountain on it either.

What is your favorite animal?

Fish. Does that count? Dogs come in a close second.

What type of film/tv do you like?

Mystery shows, mostly British

If you could have a superpower for a day, what would it be?

Invisibility. The power of flight would be cool too. A nice combo might be if I were to become a ghost. Then I could float around without being seen.

If you could have a conversation with ANYONE living or dead, who would it be?

I can think of three: (1) The Dalai Lama, (2) Rosalind Franklin, (3) Rita Levi-Montalcini. They all achieved greatness against the face of all odds; the first as a spiritual leader, and the other two as scientists (though Franklin couldn’t get the Nobel Prize posthumously for helping to work out the structure of DNA). Their resilience and love for what they do inspire me.

Chocolate or Lemon?

Chocolate. All the way. Though lemon is nice in some things, like lemonade and chick pea curry.

If you could have any job, what would it be?

I would be love to be a professor with a genetic counseling practice on the side. I enjoy doing science and mentoring students/teaching. I think I would also like to do some outreach work as a professor. But a life in the ivory tower is not quite for me. While the job security is nice, I would like more human interaction and meaning in my work, and generally be able to feel like I can help people with my knowledge. With a Ph.D. in progress in molecular genetics and epigenetics, the genetic counseling would be an obvious choice.

If you could have a special skill, what would it be?

I would love to be able to foretell the future (if that counts as a skill). I could see that coming in pretty handy.

That, or be able to cook. I managed to go through over a quarter of my life without being able to cook anything past instant noodles and eggs. (Perks of being married to a man who loves to cook I guess!!!)

Where were you born / raised?

A small industrial town called Jamshedpur in eastern India, which has some sprawling greens and hills nearby.

If you could change 1 thing in the world (don’t overthink it, make it fun) what would it be?

(1) Make the world a less judgmental place. But that’s not very fun, so (2) Have more hotels on the sea floor with views of lovely fish and corals!

And I answered a “free” 12th question, just because I am sure almost everybody wonders about this:

Why did you start this blog?

Fibromyalgia can be a very frustrating condition in more ways than one. And developing it while in graduate school does not make it any easier. This blog is my way of taking back some control over something that can make me feel very powerless. It is also one more window into the outwardly invisible world of graduate students/scientists with chronic illnesses and disabilities.

My nominations to pass on the Liebster Award:

  1. Beyond the Masquerade
  2. Frankie Plus Me
  3. One Mountain at a Time
  4. Eccedentesiast
  5. Talking Through Life
  6. Nikki’s Confetti Life
  7. Light Everyday
  8. Loving Leisure Time
  9. Expressing the Silence of Pain
  10. jenn2dabennphotos
  11. Think Farris
  12. And a bonus 12th: Sunlight in Winter (yes, bonuses are theme for this post… somehow after teaching undergraduate freshmen for a while, you simply cannot escape the bonus bug)

And below are my 11 questions:

  • What made you start your blog?
  • Tell us a secret about yourself.
  • If you could live anywhere, where would that be?
  • What/who is your most favorite book/author of all times?
  • Think of (at least) one thing that you could be grateful for even on your worst day.
  • If you could have a superpower for a day, what would it be?
  • If you could go on a date with a historical figure, who would it be and why?
  • Painting or Photography?
  • Name one thing that made you happy today.
  • If you could have a special skill, what would it be?
  • If you could change one thing in the world (don’t overthink it, make it fun) what would it be?

That’s it! Thanks again to Life as a Spoonie for nominating me. And I hope to learn more about my fellow bloggers.

Love,

Fibronacci