As I sat in my mom’s hospital room on the day of her long-awaited discharge, I felt like we were bringing home a very fragile adult baby. Her body had been through a series of assaults starting with an acute exacerbation of IPF and ending with a double-lung transplant.
As I continue to recover from an acute health setback I wrote about earlier this month, I’ve been seeking ways to prioritize and improve my mental health. While I’m not completely alone, it has been tough to remain indoors and away from the many people I love, especially as…
There is a phenomenon in psychology known as “lost possible selves.” Possible selves are the heroes in our life story that we create within our inner narrative. They are made from goals and wants, fears and risks. They represent the infinite possibilities, expectations, and desires for our lives.
I write a lot about the importance of person-first language and illuminating the identities that make me who I am. I often point out that my diagnosis of idiopathic pulmonary fibrosis (IPF) is just one part of me. In narrative therapy, we call these our preferred identities, a…
A Yiddish proverb states, “When a father gives to his son, both laugh; when a son gives to his father, both cry.” This is true when giving gifts of time, energy, and love, as in caregiving. A parent caring for a child is an act of…
Many Pulmonary Fibrosis News readers know that during the last few months, I have had several acute illnesses. As a patient living with idiopathic pulmonary fibrosis (IPF), a life-threatening lung disease, I ended up quite sick as a result. Since mid-November, I have been recovering from pneumonia, influenza A, strep…
Last week I wrote a column about energy expenditures and how I choose where to invest my energy in the multiple tasks vying for my attention. Unfortunately, since being diagnosed with idiopathic pulmonary fibrosis (IPF) four years ago, I just can’t give everything the energy I’d like. As a…
When I recall the times that loved ones were in the hospital for extended periods, I can still feel the energy of the waiting rooms. ICU waiting rooms have a particular hum about them, a palpable tension created by people in limbo, including those often too stressed to…
Learning how to balance personal tasks with my health needs has been a difficult lesson since my diagnosis of idiopathic pulmonary fibrosis (IPF). It’s something I have not yet mastered. Previously, I sought recommendations from my healthcare team about how to do this better. They encouraged me to think of…
Last week was Global Tracheostomy Tube Awareness Week. The mother of a child with complex health challenges started it. Her goals were to educate people and normalize her daughter’s trach. While Trach Week focuses on the use of a trach as a long-term treatment, it got me thinking about my…
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