Working to Live, Not Living to Work

You know what I have been thinking about a lot lately?

Our innate desire as humans to spend our time pursuing work and what happens when that doesn’t happen.

Last fall, I made the decision with the guidance from my care team and family to stop working full-time permanently. You got it– I am 26, “retired”, and ready to talk about it.

The choice to stop working full-time wasn’t exactly an easy or normative decision to be made in my mid-twenties while everyone around me was in the thick of building their own careers. Truthfully, the reality of it all swooped over me, approaching at a speed I couldn’t foresee and with a certain level of stealth I couldn’t possibly avoid. At the time, I was close to finishing my master’s degree in public health and enjoying my full-time job as a nanny when I felt my “career days” were coming to an end, even before they had officially started.

As an adult with CF, this isn’t technically uncommon. Many CFers stop working long before their peers for various reasons due to deteriorating health, increasing treatment burden, and the typical energy demands of traditional employment. Recent research shows that the act of limiting or discontinuing work is associated with preservation and improvement of lung function, making it a popular choice for individuals at various stages of disease. I was one of the many in this particular situation, but in retrospect, I was a very heartbroken individual.

Outside our little CF world, we don’t talk much about losing your ability to work. Maybe it’s because the stigma and judgment that can come with the territory of an invisible illness– sickness that can’t be seen with the eye; maybe it’s due to the internal grief we experience ourselves from the loss; or maybe it’s because we strive for normalcy and stopping work in your mid-twenties is the opposite of normal. I’m sure there are many other reasons, many other fears, and many other silencers that bury this dialogue deep from the outside world, but having faced it myself, I think it’s important to provide it some sunlight.

Last fall, I felt incredibly trampled by my disease’s unwillingness to compromise to the rigid expectations that were set before me– both my own and of those crafted from the outside. Larger society expected me to work as a well-educated, young, ambitious, and assumingly healthy adult, and I equally expected to somehow manage it all without fail. My body was incredibly worn out, but my mind and expectations were alive and well. It was the first time I failed to meet expectations as a whole, and it also was the first time I comprehended how attempted “normalcy” could jeopardize the quality and quantity of my future.

Consequently in the months following, my medical documents were reviewed and benefits filed. My five-year plan erased and purpose transformed. My schedule shifted and priorities realigned. I quickly recognized that for the first time in my life caring for myself and managing my disease was my actual profession. And, it felt weird. It felt isolating. Suddenly, I wasn’t 25 anymore– I was 65. But unlike those eligible for retirement, I found myself mourning the loss of something that passed long before its time: my opportunity to explore the typical working domain (i.e. social support from co-wokers, financial freedom, occupational purpose), to give back to society and make a difference, and to experience this particular hallmark of your twenties in a conventional way.

Something else that weighted heavily on my heart during this time was a sense of panic that people would assume my decision to stop working translated to laziness—nothing about CF life is lazy. (I know, it was really stupid.) I also hoped people would agree I was still filled with potential and value sans successful career. (Again, stupid.) Finally, I dreaded the unfair assumptions, beliefs, and judgments from overly critical individuals who frankly were clueless to my situation. (Sometimes, Janeil, you are just stupid.) For some preposterous reason, we care so much what others think of us that we sometimes lose our own measure of value. I think last year leading up to my decision, I lost my measure of value and success. I was trying so very hard to be “normal”—to fit into that stock mold of college, career, kids, retirement, etc. When in fact, I’m more than normal; I am extraordinary (just as you are)! When you are extraordinary, developing personal expectations that respect your own physical and mental parameters is the smart, healthy, and brave course to take.

If anything, a great lesson has sunk in and made itself home within my heart in the course of my short retirement: I am the only one who can decide what is right for me. You do not live in my body, you do not walk in my shoes, my heart is not yours, and vise-versa. I hope I give others the same respect in the way they choose to live the course of their precious lives.

I made a smart, healthy, brave and equally painful decision to hand over one large aspect of my life to faith last year. I released another piece of normalcy from my grasp. It definitely wasn’t easy, but there were so many immediate and delayed benefits that a year later I know I made the right decision. With clarity and perspective that can only be gifted with time, I am able to see how the Lord closed one door in the face of an incredibly hesitant and disappointed Janeil last November, while simultaneously handing me the key to my very own door factory. Beautiful opportunities were presented to me over and over again—things I couldn’t have done if I was working full-time and exhausting myself of my resources. I have crafted a lovely, but unique vocation for myself and I am so proud.

It’s true that the best part of having something taken away from you is the empty space it leaves to be filled.

I became a more helpful wife following my “retirement”.
I became a more trusting follower of Christ.
I released a significant amount of burden and guilt I carried around.
I started this blog (ONE YEAR AGO LAST MONTH!).
I learned to rest, heal, and renew when my body needed it most.
I became a more responsible and compliant patient.
I found fulfillment in sharing my thoughts and investing in the CF community.
I gained more mental and physical energy.
I joined The SaltyLife Magazine team and had my writings published.
I volunteered with our CF clinic’s Quality Improvement Team where my unique opinion was valued and I was able to give back to my care team.
I was asked to share more about my special life at speaking events.
I participated in important clinical trials that paved the way for a better future.
I had more time and energy to spend with the people I love.
I had the occasion to enjoy the many simple joys that filled my days.
Finally, I had an abundance of health essential to plan and prepare for a family.

What changes in your life are you hesitant to allow because of fear? Try to be brave and look for the other doors.

Always with Love,

4 thoughts on “Working to Live, Not Living to Work

  1. Nancy Jo Schaffer Walfish says:

    Love and admire you so much, Janeil. And from my very limited, selfish, point of view, God put you here for Natalie, and you never HAVE to “accomplish” another thing! Of course, you do continue to add to our world, and many great things are yet to come, but I am already so grateful.


  2. Elizabeth Snyder says:

    Janeil-so inspired by your words and so proud to know you!
    Although our situations are different, I too have felt at different times in my life that I had to defend and define myself separate from my vocation-and sometimes that was challenging.
    Know that I am sending you and Pete so much love!!!!


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