A Mysterious Illness Spoiled My Plans but Not My Life

As I neared the end of a long, fulfilling career as an administrator in the health field, I was excited by the approach of my retirement years. I had improved the lives of people with disabilities and other health concerns by raising money so children with disabilities received physical therapy, obtaining grants to care for adults with mental challenges and helping families and veterans with mental illnesses find appropriate care.

When we got closer to retirement, my thoughts turned to envisioning long trips with my husband. We had traveled all over the United States and in some European countries and expected more travel in retirement. I hoped we could visit many museums and art shows. I wanted to attend writing conferences and book fairs. We planned more frequent trips to visit our only child, in Washington, D.C., two flights away.

But life had something else in mind. I had been asthmatic since my mid-30s but when an asthmatic flare sent me to a hospital in January 2016, a hospitalist recommended I see a pulmonologist. On my first visit there, my blood oxygen level, a measure of the oxygen in my bloodstream was 72. A healthy level is 90 and above.

"You have a dangerously low oxygen level," the doctor informed me, "and you need supplemental oxygen."

He meant now. When I arrived home from his office, two technicians delivered a blue, 40-pound oxygen compressor to my house. This machine makes a continuous flow of oxygen from room air. I named the big blue box "Big Tanko."

The technicians also left eight or nine 20-pound tanks of compressed oxygen for me to use away from home. I lugged three full tanks — each supposed to last three to four hours — to my car every morning and removed the empties when I got home. My job as business development director kept me hopping all day, from working with sales staff in physician offices to attending community health meetings and consulting with the staff of our local V.A. hospital on their patients.

The first summer with the supplemental oxygen was challenging. I learned to live with something tethered to me; eventually, I ordered a portable concentrator to run off a plug in my car. He was called "Lil' Tanko." While he was an improvement over the heavy, green tanks, I had to take what I dubbed "cord management training" to learn how to avoid tripping over the tubes and cords I needed with me. I also had to be vigilant to keep people around me from tripping over the translucent tubing. I often found myself wound in plastic tubing around my feet or tangled in my purse handle.

And my shortness of breath and fatigue got worse.

My pulmonologist was baffled and thought something else was happening in my lungs, a mystery that would take years to solve.

I was hesitant to get an accessible parking placard for my car, thinking they were only for people who were in wheelchairs. Why take up a convenient parking space when so many people needed it more than me?

I did not see myself as impaired. I had spent my career in health care and knew what being disabled looked like, and this wasn't it.

I volunteered for six years at our local Easterseals office, serving a term as chair of the board of directors, building new programs and raising funds for adults and children with disabilities. Seeing the challenges of severely autistic children who couldn't speak, adults experiencing quadriplegia or persons born with spina bifida or cerebral palsy made me grateful for all that I had.

It became harder to manage work when the heat and humidity arrived in the summer of 2017. Every day, I wondered if I could make it to 5 p.m. Getting in and out of the car on the sultry days sapped my energy and focus. I also did not think I could work with the level of passion the job demanded. I often came home and fell asleep from the fatigue.

I had been wrong about myself; I needed help. I had to learn the lesson that disability, like many things, is on a spectrum, and while my illness was less challenging, that alone did not diminish its significance in my life and its effect on my mobility. I began using an accessible parking placard unless a regular space was nearby.

It is still difficult for me to say I have a disability when I see the challenges of people around me, those with cancer or those served by Easterseals to cope with serious problems that require 24/7 assistance.

The time arrived for a change. My husband and I turned to our financial planner for assurance that I could retire without a huge hit to our lifestyle. My full Social Security retirement age was 66½, a long way off.

I retired in October 2017, stupidly never bothering to see if my work disability benefits would cover me, still believing I was not that impaired. (Later, I would apply for Social Security Disability and be awarded on the first pass, which after 29 months gave me access to Medicare benefits. Not applying for work-related disability benefits was a huge mistake.)

While I was happy to be away from the eight-to-five grind, my husband still worked, which felt strange. I had few domestic skills, so despite all my free time, I wasn't interested in cooking all the meals and cleaning the house daily.

Travel went out the window as I couldn't fly due to my oxygen needs, not even to see our only child in Washington. Trips to art museums or shows or anywhere that required a long walk was untenable, as my "Lil' Tanko" usually pooped out after two hours.

Even going to church was a problem. With a thirty-minute drive to church, the concentrator always died during Holy Communion. I could change the battery; taking off the case I needed to carry was like removing a toddler from a snowsuit with more trouble and noise. The service was over by the time I replaced the battery.

What was my purpose now? How would I spend my time? I had always been active, going here and there, volunteering for church and community groups, and working since I was a carhop at age 14 for 40 cents an hour at the local root beer stand.

Retirement is one of life's biggest changes, although I had no idea that the transition would be as hard as leaving for college or adjusting to the empty nest when our son moved a thousand miles away.

I had to adjust. I learned where all the electric outlets were at my favorite restaurants, so Lil' Tanko could get powered up. Friendships changed, as some were busy on the career treadmill, and I had just stepped off. Other friends faced health challenges or caregiving responsibilities they could not have anticipated, and I found ways to support them in my situation. I made new friends, which was a delightful surprise in my 60s.

I joined online writing groups, and now contribute to several publications and participate in a weekly writers' group, Dreamweaver, which means a lot to me.

While I cannot run a booth at my church's Fall Festival, I can serve as the council secretary for our monthly meetings.

After years of looking for oxygen that would allow me to fly, I discovered a portable oxygen concentrator with pulse and continuous flow settings. In April, my husband and I visited our son and his fiancée in Washington for the first time since I went on oxygen. He had often visited us in Indiana, but we longed to see him in his own life.

I continue to find my way in an unfamiliar world. In 2022, six years after I went on oxygen therapy, my doctor finally came to a diagnosis. I have fibrosing mediastinitis, an interstitial lung disease with symptoms similar to pulmonary fibrosis. While my health continues to decline, my spirit is fine as I've worked through these adjustments.

For me, the secret is counterintuitive to a career. Life is best spent one day at a time, not glued to a phone or old-school Day Planner. I don't think much ahead. No one can discern the future, crystal ball or not. I often remind myself to appreciate each day's wonder and not worry about the next.

Amy McVay Abbott is a retired health care executive who writes about health and aging, caregiving, disability, and occasionally the arts and history. She formerly wrote “A Healthy Way,” syndicated by Senior Wire News Service. Read More