The Pursuit of Something More

The pursuit of something more in life as a broad picture, and in the moment, seems to be something engrained in human DNA. I don’t like to speak for others, but in general, I think that wanting something more is not uncommon. I’ve always been a person to feel this way. This drive and motivation may have contributed to my current state of poor health. It is, after all, because of this drive for accomplishment, and my perfectionism, that I spend more energy doing certain things now, like brushing my teeth, than I did when I was healthier and had more energy to give. I want to do what I’m unable to, and will always try when I’m told I can’t do something, especially when it’s my body telling me. I have pushed my body and mind beyond limitations in the past, and I continue to do so to this day.

This mentality is a double-edged sword. It ensures that I will never be stagnant in my pursuit of accomplishment, even when my body is forced to be stagnant. When I was too sick to accomplish much of anything, I shifted my focus to just staying alive — a major accomplishment given the state of my health at the time. And once my health stabilized, I began to focus on visualizing the things I wanted to accomplish at a future point in my life after I regained some health. I still may not have been able to accomplish things with my body, but at the time I could at least lay the framework in my mind. For months, I wrote short stories and novels, remodeled houses, drove city streets, flew over beautiful landscapes. In many ways, it was this visualization that kept me alive. I’m writing this not to preach some new age, pop psychology wisdom. After all, if you’ve read my other posts then you know how cynical I am about unsolicited advice. So I’m just talking here, no agenda.

Anyway. Now that my health is on an upward albeit still stunted trajectory, I find my yearning for accomplishment to be a dangerous thing. Minimally, my drive has the potential to use up all of my energy, at worst it has the potential to deplete all of my limited health, in turn, making me sicker. So far it has only managed to do the former, but I constantly fear the latter. The fear of becoming sicker is something I encounter everyday. It is a very real, often visceral, maybe even existential, fear that compares to that sinking, zero-gravity feeling one gets when remembering that life will one day end. For me, it feels not only like an eminent death, but a painful one as well. I catch glimpses of not being able to eat — having to swallow nourishment through a straw — and being blinded by the smallest amount of light — like staring directly at the sun, except in my case the sun is a tiny ray of light sneaking through my blacked-out windows. I see myself barely being able to move and struggling to communicate my needs — water, food, bathing, etcetera. These glimpses seem so real I can almost feel the misery of those unbearable days when my fears were reality. Then, somehow, I find myself grateful for the small amount of health I have regained, and thinking how my current health could tip up or down without warning, but perhaps I shouldn’t think about regressing — yes, good point, it only makes me cringe.

When faced with this, or any fear, I try to remind myself that it’s okay to be afraid — it’s only a feeling that will eventually pass — so long as it doesn’t hinder my dreams. I may have borrowed this sentiment from a wonderful, and rare non-comedic quote by Charlie Day — “You do not have to be fearless, just don’t let fear stop you.”

The truth is, because of everything I’ve been through in my twenties, I feel so flipped over and turned around I have no idea which direction I’m facing. It feels like I’ve been capsized, pulled deep underwater and I can’t figure out how to resurface. All I know is I want to find the surface so I can take a big gulp of air and hopefully stay afloat. I’m not exactly sure what resurfacing would mean for me, but it would certainly feature better health.

I realize that, to a certain extent, people always want to feel better than they do in any given moment. But I think anyone in my situation would want to be healthier. Although for me to say so is not unusual. I cannot honestly think of a time in my life when I thought: “I’m content with how I feel.” Even when I was healthy, I wanted to be healthier. And now that I’m so incredibly sick, well, I would gladly take any semblance of my prior health. But then again, I’m not sure I know what being healthy means anymore, maybe I never did.

Some quick housekeeping:

*There’s a week left before the “Show M.E. The Money” shirts and hoodies are printed and shipped, so please buy them now. There are lots of great colors — I recommend getting the brightest ones so you stand out in public and hopefully people ask about M.E.. Then you can tell them how we need more research funding. And if you’re not up for that, the design has my URL on it so they can visit it and educate themselves through my posts and articles.

**Speaking of articles, I recently had an essay published about how doctors rely on psychosomatic diagnoses when faced with a disease like MECFS. It was featured by the wonderful people at QUARTZ.

***Please subscribe to my blog. It would mean so much to me. Thanks!

14 thoughts on “The Pursuit of Something More

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  1. The wider the gap between want to do and can do, the more unrest. UNREST. So you really don’t like unsolicited advice? Okay. I tend to do that. WHY? Your posts are thought provoking. I have talked to so many people who are sick, so many people who live in a small world, they usually find joy in small wonders and live day to day. They have pets and manage to take care of them. You must have been irritated as hell about my comment that you could have a thing to take care of. It is one solution that gives people joy. I make comments based on what you write. I think your answer is in your writing, but if you want to run, well good luck with that. Sounds like your brain is far ahead of your body and your mind cannot control it. Yup. In that spot now. My envelope is the size of a checkbox on a form. Yet, it is relative, isn’t it? I guess I am jaded having done this thing for over 30 years+ I want to live 10 more years upright.

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    1. Hey Pat. Oh no, I should have clarified. I don’t like unsolicited advice from people who are ignorant to this disease. I love getting advice, solicited or not, from you and everyone in the mecfs community. So don’t hold back!

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  2. I can relate to a lot of what you write here, though I am not sick like you are. My father died when I was six years old, and I had to grow up really fast–even before then because of the way my childhood was. Due to those circumstances, I was always a bit of a control freak and a definite perfectionist–always the best everything–cramming in all of what life had to offer me at every opportunity. I didn’t want to waste any of it. I was like that with absolutely everything–work, academics, love. In my mid-20s, life finally seemed like it would work out–and then bam–in a single year–everything unraveled. It started with my breaking off my engagement to a man I adored and ended with my Mama dying on Christmas Eve. I was 26.

    While I had an intimate knowledge of death and how to survive it, I had only recently come to terms with how I ran from my grief–so grieving and staying sane and not losing the person I fought so hard to become was this monumental effort. I was so used to being the best at everything that I didn’t quite know what to do when I just couldn’t do it anymore. When the world I lived in felt like this entirely new planet, and I had no clue who I was supposed to be without her. When I was caring for my Mama, I ran at night in our shitty neighborhood–not caring about my safety–and I wrote. A lot. I faced who I was head on. And somehow, I came out of it. But I wasn’t remotely the same. I didn’t care about my career. I didn’t know what I wanted. Suddenly, I fought with professors. I felt like I lost myself, and I would judge myself harshly for it–trying so hard to do the things I used to do so easily.

    I had a lot of hard reality checks–really hard ones–many involving my health–where I had to figure out who I wanted to be. It was rough. I started embracing “self-care”–and I approached it like the most competitive human on Earth. Basically, the opposite of self-care. I had to realize that all that shit happened and I was never going to be the same, but it didn’t mean that old me disappeared. It just had to be transformed. I could say a lot more about this, but I’ve written a mini-novel already.

    Well, except that Rhonda Britten writes about fear and a lot of it resonated for me and helped me during some dark times. She’s not for everyone, but maybe read some of her stuff.

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      1. It was. And thank you. The thing I learned was that everyone has their something. I’ve talked to a lot of people who’ve gone through major loss or who’ve struggled with loss. We all seem to eventually have this turning point where, while it still sucks, there’s an acceptance of what was/is and a certain kind of freedom that allows us to keep going and to see why we’re here. As shitty as all those thing were, I’m grateful for them now, and they provided this unending well of opportunities to connect with people and things that heal those parts of me I lost. Anyway, what you wrote reminded me of that.

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  3. Yes. To all that you have written here. I empathize. I lived it and am still living it. I started following your blog a few months ago and have been intending to reach out to you ever since. Your eloquence in describing life behind the veil of CFS never fails to touch me. I became ill in 1986, when I was 13 years old. My teens and 20s were spent alternating between being bedridden and taking one step forward and two steps back as I fought back to regain my health. Fear was a constant companion, walking hand-in-hand with my desperate desire to push harder, to do more, to catch up, to live my life. You can’t abandon your goals in life when you become sick. I guess you could, and some people do, but I never did, and neither have you. (Look, I lapsed in Dr. Seuss!) People (the ones who believed) told me that I needed to accept my limitations, stop pushing them, give in and live the best life that I could given the struggle that I had. And dammit, I really tried to do it. I try to be happy with less. I tried to be content and to not wish to be healthier or not wish to achieve the things that illness was keeping me from. But I just couldn’t. I couldn’t stop wanting to be better. I couldn’t stop fighting or stop trying. And slowly and slowly and with so many failures under my belt, I am always fighting to get my life back. Am I still sick? Yes. But time has brought stability to symptom patterns. I am living a life today that I feared I never would. So to you I say keep wanting, keep thinking, keep slowly steadily pushing forward. And keep writing. You don’t know this and you don’t know me but reading your blog helps me to feel less alone. Thank you for sharing your story.

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