I Am Not My Job

When I ran into a particularly difficult situation with my last job, the “d” word entered my lexicon for the first time: disability. While my life doesn't look like I thought it would, I have come to accept where I am and gained a new perspective on work and life.

| 5 min read
Rich-DeNagel
Rich DeNagel
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From early on, cystic fibrosis left me uncertain about how my life would unfold. I would "back into" activities rather than making plans or setting goals. Graduating from college, I hadn't thought about a career, but before I knew it I was a high school teacher.

Up to this point, I had a good handle on my disease. CF was a part of my life, but it wasn't my whole life. But during my first semester of teaching, taking care of myself grew difficult. I was tired all of the time; I would pass out as soon as I got home and then wake up late. All of a sudden, life was complicated. When I went to my quarterly appointment with my doctor, my PFTs were lower than ever, I had lost a ton of weight and I had a grayish tint. She admitted me into the hospital that day. Afterwards, I changed my schedule, prioritized my treatments and, within a month or so, was back to my old self. Lesson learned: work on work-life balance.

Rich-DeNagel-Looking-into-Distance-rectangle
Rich-DeNagel-Looking-into-Distance-rectangle

Five years and a few jobs later, I ran into a particularly difficult situation again. I had used all my sick days and vacation days and even borrowed a few from coworkers. What was I going to do? I needed the job and the insurance. This was the first time that the big “d" word entered my lexicon: disability. Every time CF forces a major change in my life, my initial reaction is to say, "I'm not doing that."

Stubbornly, I gave work one more try. I was going to redouble my efforts and put CF in its place. I was shocked when the results were the same, but no one else was even mildly surprised. CF had kicked my butt.

Confused and angry, I finally -- begrudgingly -- applied for Social Security Disability.

I then faced three big questions: How do I live on a fixed income? How can I figure out government insurance? And who am I?

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The challenges seemed daunting and scary. When the first check arrived, I cried. How was I going to pay for rent, food, meds, etc.?  (Today I know that somehow I always make it through the month -- some better than others.)

The next issue was my insurance. Medicare and Medicaid are a labyrinth. The possibility that I would be on a fixed income with public insurance never occurred to me.

The first few months of not working were rough. All of a sudden, I did not have to be anywhere by 9 a.m. I had time to do my treatments and rest, but I got depressed. If I was not a teacher, who was I? I never realized how much of my identity came from my job.

When my friends would say, "I would love to sit home and watch TV all day," I wanted to punch them. The worst day of the week was Monday, a stark reminder that I had no place to be. I'm still not a fan of Mondays.

Being on disability has been a slow process of coming to terms with my disease. I had to reassess my expectations and hopes for my life. My notions of self-sufficiency were tough to let go of, and I had to learn when to accept help from my friends and family and when I could do it on my own.

I also had to learn that I am not my job, I am not my relationships and I am not my CF: each of these things are a piece of the puzzle that is me. I still had a shot at living, after seeing too many friends lose their battle. Letting go of self-pity became a necessity and I went through a lot of changes.

I love the Maya Angelou quote: “I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” It helps me gain a new perspective about work and life. Valuing myself was where I needed to begin. While my life isn't the one I thought I would have and CF is a bigger part of it now, I've come to accept where I am at. Acceptance drives a whole new idea of myself, and more often than not, I like my life.

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Topics
Workplace | Patient Assistance | Insurance
Rich-DeNagel

Rich was diagnosed with cystic fibrosis in 1969 when he was 6 months old. He also had an older sister with CF. Rich is a tough fighter who resides in New York City, and looks forward to many more years fighting CF.

May 2019 -- We were deeply saddened to learn of Rich's passing. Rich opened his heart to the CF community through our blog. He will be missed by many.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.