girl drew

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Today, when setting up an online account, I was prompted to select a security question. The first one on the list was, “In what city or state did you meet your spouse/significant other?” I automatically moved past it, instead selecting “What street did you live on in third grade?” (and, if you know, shut your mouth!). The spouse/significant other question wasn’t upsetting, but the options didn’t include “late husband,” so it didn’t seem appropriate for me. Tomorrow we enter July, which means that we’re closing in on the anniversary of Ramón’s death, July 20. For me, there’s nothing about that particular day that will separate it from the rest. I imagine people will be reminded — via Facebook memories and the like — and might post updates or send me texts. And, just like other days, I’ll struggle with how to respond. When people say that they can’t imagine my pain, I often feel guilty because, for the most part, I’m enjoying life. Alternatively, when I respond happily, it feels like may...

One day last June while I was staying in the hospital with Ramón, I decided to watch the video of his swearing in ceremony. Since he was minimally conscious, I thought it would be good for him to hear familiar voices, including his own, on what he deemed one of the best days of his life. As I hit play, a nurse practitioner entered the room. Though I was tempted to pause and quickly minimize the video, I didn’t; she asked what I was watching. When I told her, she was curious to see, so I skipped to the ending where Ramón got up to speak. With teary eyes, she told me she’d never heard his voice before. I often think about Ramón’s thank you to everyone who opened doors for him. He claimed that all he had to do was walk through the open doors, but he did more than leisurely strut through them. Ramón nudged them open further — even banged them down if necessary — then caught everyone’s attention with his calm command and charismatic smile. Ramón opened many doors for me too, literally and f...

On my birthday in 2013,  Ramón and I went to a place where we drank wine and painted. For the next several years, Ramón insisted that his painting was better than mine, despite the fact that I’ve never seen a hibiscus with roaches for leaves. We kept them on display (Don’t ask why.) and requested opinions when people came over. I asked simply and directly, whereas Ramón would phrase it more like this: “Which of these do you like better? The one on the right that’s kind of bland — or the one on the left that has more personality and creativity?” One day, when we were getting ready to move from that condo, I came home and Ramón asked me if I noticed anything, gesturing toward the paintings. His was missing, so I asked what happened. He told me that a guy who came by to do some work (which did in fact happen)  complimented them. Though I wasn’t there to witness it, Ramón claimed that he wanted to buy one. The guy chose his painting and insisted on paying him five dollars, at whic...

This day last year, Ramón walked out of our house for the last time. In the days leading up to his transplant admission, he spent more time than usual loving on the dogs. He assured them how much he loved them and said what I deemed – even at the time – to be his final goodbyes. It was wearing on me because I didn’t want to think about Ramón’s mortality; I'd already spent more than my fair share of time thinking about death. Also, after all that I’d learned about acute myeloid leukemia (AML), the cancer itself wasn’t really something to take his life out of nowhere. Instead, in Ramón’s case, maybe in the months or years [or decades] after his transplant, we’d learn that the cancer had recurred, at which point we’d try more treatment options. On one of our many hospital walks during the previous admission, Ramón asked me what actually caused people with AML to die. From what I’d read, the most frequent cause was infection and the body’s inability to fight it due to lack of immune sy...

Check out my latest update:   http://fightcf.cff.org/goto/drew .

In the fifth year of marriage, I'd finally gotten the hang of identifying as "married" after never having envisioned that for myself. Now I find myself checking another box. It took a fraction of a second to create that X, yet the route that it signifies spanned almost 9 years. Sealed with an X.

 “People ask me how you’re doing,” my dad said on a walk one morning. “I tell them you’re doing surprisingly well.” As I nodded in agreement, my dad asked if it was a choice I’d made – to handle Ramón’s death well. I wasn’t really sure how to answer that question because I didn’t consciously decide, “Boy, this sucks, but I plan to handle it well.” Instead, my life has been a revolving door of grief, and, though it never gets easier, it becomes more familiar and less permanent, even in times of deep despair. My grief experience began at a young age when I started living with the anguish that cystic fibrosis would cut my life short. When I was a junior in high school, my first good friend with CF died. The day I moved into my college dorm freshman year, another friend died. Less than a year later, it happened again. On the subsequent go-round (Are you losing count?), I got to go say goodbye at the hospital. The next time was another hospital experience, though we didn’t arrive in tim...