The Work of ‘Project Fix Me’ Is Never Done

The Work of ‘Project Fix Me’ Is Never Done

I’m restless.

My eyes are red-rimmed from late-night Google searches.

I can’t sleep, in part thanks to CF symptoms, in part because of a mind that’s running too hot, too fast.

In daylight, too, I’m preoccupied. Each time I sit down to start a task I get drawn down a different path. The thoughts appear, unbidden, and before long I get drawn in again.

“What about that supplement you were researching yesterday? You haven’t tried that one yet.”

I had little talent for science in school. Yet, over time, I have learned the specialist lexicon of a biochemistry major and speak fluent “healthcare.” In my quest for knowledge about myself, my condition, I had no choice.

I read and reread medical journal abstracts, looking for clues I might have missed. The titles blur into one another: “The importance of ‘x’ in cystic fibrosis microbiology: a meta-analysis.”

I find no conclusive answers, so I simply ask myself more questions.

“What about immune-modulating proteins like Lactoferrin? Maybe there’s some new research out.

I read about electrolytes and promising novel antimicrobials with fewer side effects. I review the literature on the importance of glutathione regulation in CF.  

But will any of these findings lead me down a path to better health? And which will leave me stumped, complete with a shrinking spending allowance?

A thought cycles through my mind constantly: “How do I know that I’m doing the right things for my body?”

I’m so busy searching for something, anything, that might make my day-to-day health just a little better that I have become distracted from all else.

I could be following up on business leads, pitching stories, or chasing invoices. I write a few lines before being drawn back into the latest headlines on CF research, the morass of potentiators, correctors, life-changers. So attainable, so out of reach.

I close a tab and try again to focus on something else, snail-like.

But it’s nighttime now and again I’m drawn in. Side effects have me fretting. I’ve noticed mild changes since starting a medication, but the implications, alone in the dark, fixated, leave me cold.

Gitte Aabo, CEO of the Danish pharmaceutical company LEO Pharma, said recently, “Patients are the real experts in their own disease. They live with it 24/7/365. I get weekends and holidays, but they don’t. Nobody else is more motivated to solve their own condition.”

That sentiment rings so true for me right now.

There are days like today, when no other task, chore, or project can take its place, or be more urgent. It’s all-consuming.

As another frustrated research session draws to a close, I realize my dedication is, in fact, proof of an industrious work ethic. It’s just that today, I cannot drag my mind away from its ultimate project: to fix myself.

***

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.

2 comments

  1. Mark Tremblay says:

    I believe I’ve experienced something similar to this before as I look back at different periods of my life. In hindsight, I realize that whenever I became negatively obsessed with my health, my mind or my future – whether I would live to see the cure – I found that my underlying emotions were predominantly fear-based.
    The first time this happened I was studying genetics in school and became obsessed with the genetic aspect of Cystic Fibrosis. Specifically, I tried to develop a CF model using Drosophila Melanogaster (fruit flies) because: their entire life cycle takes ten days complete; some of the physical characteristics (small wings, white eyes, red eyes, etc.) occur with similar prevalence to that of the phenotype of Cystic Fibrosis; and tens of thousands of them can be bread in a small space with minimal equipment. There are many other reasons why these ugly little creatures are used for genetic modeling but I think you get the point. Anyhow, as the months wore on and my mom and I (no greater love has mom ever shown) ) ethered and examined thousands of flies trying to create a prevalence model approximating CF, the overwhelming nature of my condition and more importantly the remote chance I would survive to see the cure started to weigh on me like a thick mental blanket. I spent every evening for six months after school obsessively studying fruit flies and genetic probability models (the Bayesian method stands out the most) from when I got home until dinner. After dinner when I was supposed to be doing my homework my mind continued to obsess about my life with CF, the funerals I had attended, and my future with a disease that was impossible to understand let alone escape.
    That experience, other than having produced an unnatural aversion to common house flies, made me realize that whenever my obsessions turned inward out of fear it led me to despair, depression and eventually drinking (that’s a story for another time). In a nut shell, as I learned in AA, I needed “the serenity to accept the things I can not change, change the things I can, and the wisdom to know the difference.” Among the things I can control are taking my medication including a modulator as well as an anti-depressant and supplements twice daily, doing treatments two to three times daily, and exercising regularly. I do all that so I can live the life I value which includes: working, doing ministry at church, loving my family and friends, and raising awareness about the emotional, psychological, and social impacts of CF.
    Overall, what I found is that whenever fear was the underlying motivation for my behavior, I was left emotionally empty even when my concrete objectives were met, e.g., advanced degrees, published papers and research projects, career advancement etc. On the other hand, when love was the underlying motivation for my behavior, I experienced personal fulfillment even when the outcomes were more abstract, e.g., helping someone with depression find hope through faith, sitting silently with someone mourning the loss of a loved one, bringing dinner to someone who’s hungry etc. Presently, I try to keep CF corralled through treatments, medicine, and exercise but I really focus on taming my mind so that I can more fully live the life I love and value no matter what CF does to try to throw me.

    • Elly Aylwin-Foster says:

      Mark, thank you for your comment. Incredibly insightful and a good reminder to me of when my actions may be more rooted in fear.

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