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!

PeekingThrough_signed_framed
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

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15 thoughts on “Tough Realizations (Part II)

        1. I am so sorry to hear that. I can understand how that must feel. 😦 I am (desperately) hoping that if I take a short break now, I will be able to eventually do some type of full-time work. But with my current path in academia, I would be looking at a 60-80h work week, and I feel like it’s probably for the best that I walk away from that for good.

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  1. Thank you for sharing your struggles. As difficult as it sounds, I feel like you are making progress with how you deal with life challenges. It sounds like losing control as a result of this illness has also been difficult. Your mind is going strong but physically, it hasn’t been easy. Hugs.

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    1. Losing control has indeed been hard, but I am learning to make my peace with it and thereby get back some of the control. A strong mind in a weakening body really nails me right now! But as pathetic as that sounds, I am sooo grateful for that strong mind. It helps to be a “mental” person and think about things happening to me, and work on accepting various aspects of it. 🙂 Thank you so much for your kind words and your continuous support! Hugs!! ❤

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  2. “It’s great to have that tender loving care, but they would much rather never be in the hospital in the first place!” Understand that so well! I am sad for what you are going through, but I have no words that would not be just platitudes. Please remember, an important thing that is helping you to deal with this hard situation is your determination and attitude, and for that I admire you so much. You may not be brave for “living with a chronic illness”, because what choice do we have? Bravery is also not about being cheerful all the time in spite of one’s misfortune and illness. That would be robbing one of their humaneness and honesty. To me, you are brave because you put in so much thought in understanding your own limits and strengths, and trying to continuously deal with all this in the best way possible – be it painting, be it writing, be it planning and exploring options. To be so proactive in dealing with a chronic pain + fatigue illness takes immense bravery. And I wish that you never run out of this fortitude. Hugs.

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    1. Thank you for understanding me so well! You really have a way of really lifting people up – you certainly have that effect on me! 🙂 Not to mention you can read my mind. What you said about not being brave for living with a chronic illness or being (falsely) cheery about it, is exactly how I feel about it! But it is indeed true that a lot of times when faced with a less-than-ideal situation, your attitude is really what makes or breaks you in that situation. As long as I am not pit of depression, I try to look up to see what potential good can come out of current ills, and how to get the most out of what I’ve got. Sort of harboring the “when life gives you lemons, make lemonade” sentiment, but also recognizing that sometimes you might really NEED that “lemonade” (without you necessarily knowing you need it!) so try not to be too grumpy about making it! It’s taken me a while, I think, to gain that outlook and I cannot always stick to it but I try my best. I think the proactiveness has also come with time, and is part of the lemonade-making activities. Now I just have to not run out of sugar… 🙂
      Thank you so much for all the kindness and understanding you’ve shown me! Sending you loads of hugs!! ❤

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  3. I am sorry to hear that you feel the way you feel. As an independent person myself, I find it hard defining myself as someone at home – I see myself as my own self, as a writer and person working in my own field.

    When I was unemployed a few years ago, it was hard. I refused help from my family who looked down on me. But it is through these times you realize how strong you are. Good on your husband. He sounds very selfless and loves you a lot 😊

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    1. I am sorry that your family chose to look down on you for being unemployed. That must have been awful! I can imagine how hard it must have been for you personally too, as I cannot see myself as someone at home either. But you are right, we never realize what strength we’ve got unless we are forced in a situation where we need it. I am glad that you were able to redefine your role and emerge as a successful writer! 🙂

      Thanks for the note on the hubby! He really is a gem of a guy. A lucky find if I do say so myself! 😀

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  4. I’m sorry to hear that you are having to go through this right now. 😦 When you really love a career, it can be heartbreaking to have to leave it.

    I’ve had a similar struggle over the last few years as I’ve learned more about my own illness and realized that being a food scientist probably won’t be a reasonable career for me. I’m really grateful that you’ve been able to share your experiences of chronic illness in grad school, since reading about them has helped me realize that it’s okay to be sick and that the general scientific mindset of “I shall push myself through everything” doesn’t work with chronic illness.

    And I hope you will be able to have a peaceful transition to a more restful lifestyle. ❤

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    1. Thank you for your kind words! I am glad that reading about my experience with FM in graduate school might have helped someone, if only in feeling less alone. ❤ I am really sorry though that you might be unable to follow your passion in food science. Is there any way you could reassess what it was about food science you loved, and then try to approach doing it in a different way that suits your body better? That has been one of my major "thinking points" over the last few months — how can I redefine "scientist" and play that role in a way that suits me, instead of chasing something that's only going make me sicker. If you ever feel the need to toss some ideas about – about grad school, science, whatever – feel free to drop me a private message over at my FB page (the link is in the right sidebar). Because you are right, we cannot just push push push and not expect to pay the price, that is an unrealistic expectation. I think just making peace with that one though might help me transition more easily into a more restful lifestyle. 🙂 Sending a ton of good wishes your way! Take care.

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      1. Thank you for offering to message with me on FB! 🙂 I will keep that in mind. Right now, I’m sort of waiting to see if the sensory therapy can get rid of my issues with reading, and light and sound sensitivity. That way I know how limited I will be. But I’m fairly certain that the physical work in the lab would be too much for my weak joints. I like what you say about trying to figure out what I loved about science and see if there is a better way to do that. That is definitely something I have been thinking about a lot, too.

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  5. I’ve had to accept my chronic migraines as there isn’t much I can do. When you have a passion and you can’t follow it due to an unforeseen circumstance, it really sucks. But, we just have to be strong and move forward; it’s all anyone can expect from us, despite the stigma of invisible illnesses. Great wishes and a wonderful post. 🙂

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    1. I am very glad you could appreciate the post, but also sorry because of the circumstance. Chronic migraines sound absolutely hideous! 😦 But you are right, about all we can do is keep on keeping on! I think in many ways our circumstances even make us stronger, even as they suck. I am hoping I can channel this strength into rebuilding my life into something new, so I can continue doing the things I enjoy but in a different way. 🙂 Thank you for all your kind wishes! ❤

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