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.

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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.

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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!

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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.

Love,

Fibronacci

Tough Realizations (Part I)

What felt like a whirlpool inside a sinkhole around this time last week, is finally looking like just a simple crater (minus the suction) now. For the past month or so, I have not been able to fully shake off a flare. With fewer hours spent at work or recreation, and more resting on my heating blanket in bed, I feel like I am starting to get this down to somewhat manageable levels. My doctor and I are also working on new medication to see if that can help with the daily pain and fatigue management. The upshot of all of this has been a lot of soul-searching, a healthy helping of frustration and some unavoidable, tough realizations about the way forward.

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“Pushing Through” – crocus flowers pushing through the snow in spring (digital, “oil on canvas” finish)

Until last year, I had some hopes of being able to graduate and move on to an academic postdoctoral training job. I had the condition enough under control to be a reasonable (though less-than-ideal) postdoc for few years to gain the training I would need to eventually move on to a more cushy, permanent job. But I rapidly realized that those dreams were castles built in air, for two reasons:

(1) My body decided even coming close to that kind of workload is a no-go.

(2) “Reasonable” postdoc jobs are practically impossible to find. The boss wants a publication-machine, not a person with a life. Add a chronic illness to that? Unthinkable!

Which brings me to the tough realization – that unless a fairy-godmother steps out of a pumpkin for me, I am probably going to have to take a real break after graduating and be out of “real” work; or (what feels like a complete non-option), take on a postdoc job that might be the (figurative) death of me.

In case you were wondering what I mean by “real” work, you are in good company. I have been giving that a lot of thought lately too, and may be topic for a future post in itself.

I feel like some part of me knew all along that it would come to this, but I needed the latest flare to remind me to quit kidding around. I spent the entire last year coming up with every reason for why I cannot be out of a job – everything ranging from financial, to emotional, to career potential and innate ambition. But all of that has come to nothing. I realized that the time is here and now for my husband and I to start revising our budget to account for the absence of my paycheck. And I am not looking forward to the pain that changing health insurance plans will inevitably be!

What I do know for sure is that it would be utter stupidity now to ignore the gut-punch that my body has just dealt me. (Talk about tough love!) And that I need to prioritize my health in a very real way – not in the kind of tangential way I had been doing before. I know things are going to be financially tight for a while, but I am hoping that taking a temporary break will help me get back to a different kind of work later on. Otherwise, I am afraid I might crash for good at some point in the (probably not-too-distant) future and never be able to work at all, and then finances will be tight forever!

For now, I am trying to focus on pushing through one day at a time. I try to keep my chin up that this might be the beginning of a new trajectory that might lead on to a fruitful new journey. I am not one who believes in regrets. I believe that every path we choose at a fork leads us down a different probability. And each of those probabilities will have its own ups and downs, and none will be perfect. So take your pick and let life lead you on!

Love,

Fibronacci