Weekly Photo Challenge: Out of this World

Seeing a flare to its end (or what I hope is the end anyway) is a feeling truly out of this world!

After being stuck in the tunnel for so long, to finally see some light at the end, is a delightful feeling.

Featured image: Creation, oil on 18X24″ canvas (available)

And yet I struggle with the thought that this is as good as it’s ever going to get. For everyone else, life expands, they incorporate more and more experiences as they move forward. And I am happy if it simply doesn’t contract any more! I move forward too, but always against the wind, and always aware of the limitations.

And yet, as a human being, we register differences in condition more than so than the absolute value of it. This means that despite all the limits placed on me, my instant reaction is one of pure joy, an expansion of consciousness, to realize that I am improving from a worse-off state. That what I am improving to is what most people would consider “lazying” bothers me only when I think about it in more intellectual terms, ignoring my emotional reaction to it.

I realize that my initial happiness is only dampened because I still compare my state to that of other healthy people my age. I compare it to what I used to be at one time, what I remember feeling like but haven’t felt like in a long time. But with a chronic condition like fibromyalgia, my world now spins at a different speed than it does for others my age, than it would have for me if I hadn’t developed this condition. It is not fair to compare apples to oranges.

I have learned to see that slowed spin rate on neutral terms — it has some good and some bad, just like there would have been had my world kept revolving faster. But sometimes I can’t help but feel that the existence of the difference itself is somehow mocking.

At one time, I thought I was closer to accepting my situation. And I was, but only under the circumstances I had grown comfortable in. As my circumstances changed, I realized I am on this journey anew.

Ever reaching for the light . . . thinking I feel its warmth . . . but then my world takes another spin, and I am back in the dim, reaching for the light again.

The painting in the featured image explores many of these emotions that expand through time and space. I am sure everyone has something they are struggling with, where they feel they are locked in a tunnel, and are forever reaching for the light. I think of that when I feel I am fighting an unfair battle, and try to not feel so alone in it. I try to think of the progress I am making, and remind myself to simply breathe.

Perhaps the important thing is not to win the battle, but simply to keep fighting it, and fighting it well. And all the while allowing yourself to feel the joy of small victories, however small they may be, just to feel like it’s not all in vain.




Each painting has a story, one that I strive to tell here. Since many of them have to do with my journey with fibromyalgia, a fraction of the sales 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 here or through my Facebook page for more information. Thank you for accompanying me on this journey!

Tough Realizations (Part II)

After a recent particularly bad flare, I had to make a difficult decision to walk away from a field in which I realized I was not welcome at anymore. If I stayed, I would constantly be forced to push myself beyond what I was physically capable of, and would still not be able to meet expectations. So you would think the separation would be mutual and amicable; yet it is not.

In many ways, I feel like I am still very tied to my work identity (although it’s been a work in progress detangling myself from it). Being a “scientist” is one of the major ways I identify myself. Every other descriptor I could think of – artist, woman, chronic illness fighter, etc. – are all farther down the list. When I think of descriptors of myself, “relationship phrases” don’t show up very high either. Many people identify themselves strongly as a parent (father/mother) or child (son/daughter) or spouse (husband/wife), or in other such relationship terms. I have trouble with that. I have always been a painfully independent person, almost to the point of being a loner. And I suspect it is the associated loss of both personal and financial independence, that comes with being ill and out of work, that is at the core of why it has been so hard for me to face the fact that I just need to take a break to focus on my health for a while.

I am tired of pretending I am stronger than I am . . . so why can I not STOP?

The loss of personal freedom has been something I have been constantly struggling with since developing fibromyalgia. While I can be great at offering and providing help, I absolutely suck at seeking and accepting it! It took me a while to even recognize that I had my partner in my court, and that its OK to lean on him and allow him to help me. It made a world of difference once I let myself be helped with my day to day tasks! And for once, I felt comfortable enough being helped that I never realized how hard it would be physically to live without that help!

Living in a small town, my chances of getting a job here were pretty minuscule, especially in science. For many years, I kind of saw this as a boon because I hated being trapped in one place for too long, and this place seemed to come with its own time limit. But now that it was time for me to move on and take a job in a different part of the country, I had to seriously consider how I would manage a demanding full-time job with other issues like uncertain transportation (potentially a lot of walking), cleaning, cooking, laundry, bathing/hair washing, and a myriad other day to day things that I often need help with. All of the little things that didn’t even merit a thought in my brain at one time are now all serious issues that have the potential to wipe me out and flatten me on my back for days.

Accepting help is its own kind of strength

I realized that for the first time, I actually need my husband to be with me, physically, and help me out! Not to mention, I would also need him financially, if I were jobless, and not just to provide general subsistence (a shared need), but also for my healthcare needs (a very personal one). And I have never needed anyone in that way before. As a person who prizes her independence, that realization – that I might really need someone now – was one of the toughest I have ever had to come face to face with.

My husband knows how hard that is for me. In fact, he has always known it. That is why he has never made big deal of helping me – he just did it quietly and unassumingly – and made a point of doing so without treating me like an invalid. I feel like very few people are lucky to have that kind of love in their lives. And that is why – perhaps what has been even tougher for me to face – is that even that kind of selfless love does not make up for the sense of loss that I feel due to my illness.

This realization has been really hard for me because it is almost like admitting his love is not enough, despite everything he does for me all the time. And it makes me feel guilty, because he has been the only constant force through many of the things that I have been battling for many years. Yet it is not as if I am not grateful to him and for him. But it is the gratitude that one might feel for nurses when interned at a hospital. It’s great to have that tender loving care, but they would much rather never be in the hospital in the first place!

It is through the snow that spring bursts through!

Though, in some ways I wish I never had to face these harsh realizations, in other ways I am grateful for them. It has given me a chance to really think about why my work identity matters so much to me. Why am I so loathed to accept help? Why do I feel this insane need for independence? It has given me an opportunity to delve deeper into myself and work on long-standing issues that I may never have otherwise. So as a person who craves new and varied experiences, as unpleasant as this one is, I still see it as an adventure! I am still expecting good things to come out of this time of uncertain and difficult realizations. I may be a ship in a bottle for now, but that doesn’t stop me from still looking out towards the sea.



The Gift of Gratitude

Any recipe for happiness always calls for a healthy dollop of gratitude. It is, of course, easy to be grateful when one has something obvious to be grateful for. But when things are not quite so obvious, but you seek them out to be grateful for them anyway, that’s when the magic really happens (as I found out for myself today)!

For the last few days, I have been extremely nervous about an upcoming trip halfway across the world. It involves traveling for nearly two days, without the possibility of any real rest break in between. It is the first time I will be making quite such a trip since my fibromyalgia kicked in full force. And I am dreading the depth of the crash that will hit me at the end of it.

Though I am rarely the kind of person to bemoan my fate a lot, this was one instance where the unfairness really hit hard. I have always loved traveling and never really worried about making it by myself. But since my endurance levels have plummeted with fibro, my self-confidence has taken a heavy beating. I even considered asking for disability assistance at the airport, but I am not really disabled, and so felt incredibly guilty potentially stealing away the personnel and equipment from somebody who might really need it. Besides, I could only imagine the looks I would get in a wheelchair, at my age, and with my illness being invisible! All in all, I was really beginning to feel like life and fate were leaving me out in the cold.

After sliding halfway down into the pit of despair, it suddenly occurred to me, that despite the recently worsened fatigue problems, I have been no stranger to pain – not for a very long time! Traveling has always been hard on my back. Developing full-fledged fibro has just made it a bit harder. Yet, at the same time, having that diagnosis has meant that I now have much better resources to ease the pain than I did before! I finally have access to medicines that are designed to try to prevent bad flares, and then subdue them if and when they do occur. I never had any of that before! I was just forced to deal with the pain all by myself.

And suddenly, that one realization filled me with so much gratitude! Gratitude for being able to have the diagnosis, for being able to access the medication I need, for a medical team that has been beyond phenomenal, and for a family who have been trying to make my journey as comfortable as possible.

Life had not left me out in the cold! I had both formal and informal support systems to help me as new difficulties arose. Being able to recognize that, especially though all my grief and woes, felt like a gentle cozy hug on a cold and windy day. I couldn’t help feeling warm and fuzzy inside, as it filled me with so much joy, despite all my apprehensions about the trip!

That’s when I realized the true magic of the gift of gratitude. The joy it brings never runs out! There is always something to be grateful about, whatever the outward circumstances may be. And in that sense, it is truly a gift that keeps on giving!

I wish all my dear readers a wonderful holiday season! I may be gone awhile for this trip, but promise to return soon in the new year, with more thoughts and tips from my fibro journey. Thank you all for supporting me through 2016!



The Power Within

Chronic illness has a way of making one feel very powerless, like they have lost say over much of their own body. But a couple of incidents over the last few weeks showed me just how much power I still retained. And just how resilient the human body really is!

I had the epiphany a couple of weeks ago when I managed to desperately (and successfully) “hold back” a major crash, or at least keep hidden any outward signs of it, while in public. It was sudden, my energy was depleted, and I was feeling dizzy and nauseated as an intense gnawing ache gripped my body. Yet I was not in a position where I could easily make an escape and collapse in bed, or even find a place to be miserable in private.

So I tried my best to look as normal as possible on the outside. I think I was successful because I did not pass out regardless of how close I came. I am not sure how much sense I made during the conversation with my boss. I suspect I said things to just put off the talk for later. Processing anything seemed impossible at the time, as it felt like it took all my remaining capacity for effort to just hold myself upright and stay conscious.

Incidentally, this wasn’t the first time I was engaging in such a battle of will against my body. That was my modus operandi for the first year with FM before I learned how disastrous that is for me.

Given my past experiences, however, I knew I could not keep up the shield for long. Running on auxiliary power feels incredibly draining. Without exception, I always feel worse later when I can finally stop the show. On the contrary, when I am free to “give in” to the crash, I find I swing back from it faster.

I liken it to a dam that is holding back a flood. It works up to a point. But as the force of the water grows, the dam eventually breaks. And then it causes more damage than if you had just opened the dam(ned) gates in the first place. But sometimes it is necessary to risk that damage in order to evacuate folks and save their lives.

38_Sun Meditation-II
Sun Meditation (7X14, oil on canvas)

Sometimes I wonder how erecting such an internal dam is possible at all. My best guess is by the sheer force of will.

I find it amazing that such will is capable of us puny human beings! And the conscious awareness of that kind of strength of will is certainly a gift in itself. It is a reminder of the power that we hold within us, regardless of how much control we may feel we have lost to our illnesses.

But with great power comes great responsibility. Stronger the power, the more sparingly it is best exercised, so as to avoid its abuse. It will be a rewarding journey as I learn more on how to best channel and direct my will power towards achieving better balance and harmony in my life.