Each person’s experience of having a sick parent is different. For me, it was relatively easy until my mom’s condition became a crisis. From the start, I refused to research any terms that I’d overheard. I didn’t want to know what Dr. Google had to say about “interstitial lung disease,” “hypersensitivity pneumonitis,” or “fibrotic lungs.” I chose to go through it with a degree of ignorance. My parents enabled my innocence; they kept me in the dark on scary developments until I needed to know.
A lot of people don’t agree with that approach — hell, I don’t completely agree with it, either. It was frustrating to suspect that there was more going on than the information to which I was privy. But honestly, I am glad that they gave me the gift of ignorance. Being 25 was hard enough for me.
During the same year that my mom became a patient at the University of California, San Francisco (UCSF), I worked three part-time jobs, my then-boyfriend joined the Army, we got engaged, eloped, and he left for basic training two days later. I had my hip reconstructed, battled depression, and moved to Washington from Nevada after 10 months of being apart from my husband. I would have felt enormous guilt on top of everything if I had moved away knowing how sick my mom was going to get.
Each visit home revealed new developments in my mom’s health. To address air quality and allergy concerns, my parents got rid of anything with goose down, traded the carpet for wood floors, and installed radiant heating. Each change made me more aware of the severity of her illness, but instead, I continued to focus on my dramas. It didn’t feel that she was deteriorating even when she started using supplemental oxygen. It’s easy to be in denial when you aren’t confronted with the daily reality.
Then it all hit the fan. Six weeks before my mom’s midnight medevac flight to UCSF, we were in Hawaii celebrating her retirement. She was thinner than before, but sun-kissed and vibrant. She didn’t even need her supplemental oxygen. But then, poof, she was in the intensive care unit (ICU) at America’s top lung transplant hospital. Hello, reality.
As my dad guided me to the ICU for the first time, he said, “She thinks it will freak you out to see her hooked up to all this stuff.” I didn’t want her to worry about me feeling anxious or upset by her state, so I readied my brave face.
I visualized the room into which I’d be walking. I knew she had a tracheostomy. I assumed there would be IV lines and heart and oxygen monitors. I pictured her in my mind’s eye in one of those sickly blue gowns. I saw the trach, tubes, wires — the works — and imagined the tiny room, the bed, the beeping. As we approached the room, I practiced walking in and seeing her in my imaginary room. By the time we got to room No. 3, all I had to do was take a deep breath and hug my mom. The tubes and wires were nothing I hadn’t seen before.
While visualization is a good way to work through your fears, you can’t get some details right until you see them in real life. When I visualized my mom in the ICU, she looked like she had the last time I’d seen her, only this time hooked up to medical devices.
However, when I walked into her hospital room, she did not look like herself at all. I had prepared myself for medical paraphernalia, but I hadn’t anticipated her pallor. She had gray-white skin, blue tinted lips and nails, and thin lines of worry across her forehead. I tried not to let my worry overwhelm me as I took in all of these unexpected details.
I felt both terrified and relieved. The veil had lifted and the ugly truth was out there. The age of my ignorance ended, and with it, my time of innocence. I aged 10 years in 10 seconds. I felt fragile and helpless but also empowered and ready to fight.
We held hands and made small talk. I struggled to read her lips, so she wrote to me on a notepad. I combed her hair and rubbed her feet. We laughed, cried, and comforted each other. The world slowly rearranged around us and I began to understand what we were facing.
Note: Pulmonary Fibrosis News 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 Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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