Our society places great emphasis on success through careers. Whenever we meet a stranger, one of the first questions we ask is, “What do you do?” I feel this pressure despite my awareness that my illness makes it difficult even to predict what the next few months might bring.
The other day, I took part in a conversation about what is an appropriate salary after five years in the workforce, plus how and when to ask for a raise. I was silent for most of this conversation because I didn’t have much expertise to add.
Three years ago, I turned down a scientist position, testing water and wastewater at an engineering firm’s lab. This would have been my first big-girl job. After the interview, however, I secretly hoped I wouldn’t get an offer because I wasn’t prepared to face the decision I would need to make.
I also wrote my first published work, for the newsletter CF Roundtable, three years ago. It was a pained, confused reflection on being stuck in a situation where my body was failing me, while ambition kept me reaching for the corporate ladder’s next rung. I couldn’t escape the feeling that I was falling behind all my peers in life.
My CF had its own agenda, and “keeping up” wasn’t in the plan. I was down to 30 percent lung function; realistically, I couldn’t work eight-plus-hour days and manage my health well enough to ward off infections and stay out of the hospital.
I credit another amazing woman with CF for encouraging me to continue my flexible, part-time work as a technician in a university microbiology lab. This job ensured that I didn’t lose my Medicaid benefits, which have proved to be absolutely vital. It doesn’t completely satisfy my desire for success, though, since there’s no opportunity for advancement.
I vowed to find success in other ways, but I didn’t know what that would look like. Would I really find it or would I just feel like I was floating through life?
Surprisingly, that first article I wrote — meant to simply vent frustrations and reach others who were going through the same things — ignited a passion. It sparked in me an interest in exploring and explaining my thoughts.
Writing has brought me fulfillment and generated other opportunities to use this skill and my biology degree simultaneously. I’ve been published on multiple websites, and even get paid for it sometimes.
As time has passed, some of the microbiology work in my lab has intersected with CF. I study commonly found bacteria in water systems — the same bacteria that can cause infections in lungs with CF — and their antibiotic resistance. Having this background knowledge has allowed me to explore and to understand CF research.
In addition, I’ve been involved in various advisory committees that provide patient perspectives on research questions and methods. I now provide a scientific voice to the CF community, while cultivating my life’s purpose and success.
I’ve also participated in CF research conference planning, and through many meetings with doctors, researchers, and those interested in understanding the patient experience, I’ve found interest in science communications. This involves helping researchers and professionals relate to the general public and raise public awareness about research.
If I get the opportunity to devote time after a lung transplant to a career, I want to further pursue this path. I have already gained experience in the field through volunteer opportunities in my free time.
Needless to say, the last three years have inspired me. They have also brought setbacks in my health: three surgeries for collapsed lungs, months in the hospital, many infections, and weeks of IV antibiotics. Most recently, I’ve been evaluated for a lung transplant.
If I’d had a full-time job, I would have missed so many hours that I’d probably have been fired and forced to take disability. It’s likely I would not have been able to get back on Medicaid. I also wouldn’t have had time to take care of my health, pursue interests, and travel.
I want to reassure those with CF who are on the fence about employment that there are other ways to fulfill a desire for success and identity. Life works out. As long as we have the drive, determination, and ambition to invest our best in whatever we do, and to gain fulfillment from that task or accomplishment, we are successful in our own way.
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