Some days, I feel well enough to make the most out of each day. On these days, I find the energy to clean the house, make food, do laundry, get shopping done, and work a part-time job as a nanny. Although all of this…
Columns
Wonder Woman has an invisible jet. Harry Potter has an invisibility cloak. I have an invisible illness. The people I sit next to on the metro cannot see it. Members of my family cannot always see it. Every day I work with and walk among healthy…
One of the most challenging realities I face with chronic lung disease is that my only option to feel better is to continue with treatments. There is no cure to make it all go away. Instead, I must choose to say “yes” to treatments, taking medications,…
For 16 years I slept with supplemental oxygen delivered through a nasal cannula. Prone to desaturation at night, I blasted two liters of concentrated oxygen through my nose every minute in an attempt to keep my bloodstream’s amount of oxygen at a safe level. When…
People say that bad things happen in threes. I think that saying is a bunch of baloney. Lately, it has felt like bad things are flooding my life. Some days I ask myself, “What else can go wrong?” The universe takes that as a challenge:…
“When we’re headed toward an outcome that’s too horrible to face, that’s when we go looking for a second opinion. Sometimes, the answer we get just confirms our worst fears. But sometimes, it can shed new light on a problem. Make you…
Lately, I’ve been so busy with my freelance photography business that I haven’t had time to put thought into a new column. I suppose that means it’s time to write about what I do outside of publishing this column and moderating the Pulmonary Hypertension…
According to the National Consortium on Racial and Ethnic Fairness in the Courts, “National Disability Employment Awareness Month (NDEAM) is a national campaign held in October that raises awareness about employment issues for disabled people, and celebrates the many and varied contributions of America’s workers…
I previously defined myself by the things that consumed the majority of my time. In high school, I was a student-athlete. I used most of my energy for ice hockey and the rest for studying. In college, I spent most of my time in classes or…
Last week, I was discharged from the hospital four days after surgery. During my stay, my body had gone through a trauma. I was operated on, intubated, and mechanically ventilated. I was managing pain that felt beyond my control. I was sleep-deprived, medicated, and not in…
Claire Wineland’s death on Sept. 2 set the tone for the month. Great losses in my communities clouded September. Claire suffered a stroke after a double-lung transplant. She was a brilliant young woman with a gift for public speaking, and she had cystic fibrosis. Her story was highly…
Wednesday’s evening air was heavy. It was as if Atlas kneeled and tugged the sky down with him. I drove through the California hills and beaches of Santa Cruz for hours, searching for anything that could relieve my inexplicable despair. While driving, I remembered the month before, when I sat…
