Getting through difficult periods with the help and support of others

Over the last two months, cystic fibrosis (CF) has summoned challenges that caught me by surprise. First, my body betrayed me in a way I haven’t experienced in more than 20 years: My small intestine became obstructed.

Weeks later, my betrayer was not physical, but logistical: An airline lost my suitcase filled with multiple weeks’ worth of medications. On the third day of my honeymoon.

Both of these situations initially left me feeling isolated and helpless.

How we make it through

I’m fortunate to have remained relatively healthy throughout my life with CF. Most of the time, I’m able to be my own advocate. When dealing with my bowel obstruction, though, I was in and out of consciousness, and a nasogastric tube limited my ability to speak. This obviously made it difficult to advocate for myself.

Jessica, my wife of only four weeks at the time, has been around the CF world and knows it well. She also knows me better than anybody and has my total trust. Throughout this hospitalization, she was with me, monitoring me, asking the nursing staff questions, sending updates to others, and coordinating logistics for our dogs. My parents also showed up, dropping everything and driving hundreds of miles to be there for us.

Others showed immense grace during this week, as well. I was admitted the day before I was supposed to leave for San Francisco, where I was slated to deliver the closing keynote at a CF research conference. I had planned to take the week off to explore and see redwoods for the first time, and was devastated when I had to cancel the trip.

The conference organizers and my colleagues were gracious and supportive, though. Their kindness gave me the space I needed to focus on healing.

More recently, I was forced to check a bag containing essential medications due to limited overhead space on the plane. At the time, I didn’t know I had the legal right to keep my carry-on with me. The situation felt entirely avoidable.

After learning my suitcase was lost, there were moments when I saw nothing but red. The airline suggested I purchase my medications at a local Italian pharmacy, but these meds are not easily attainable. Jessica and I were on our honeymoon, and the last thing I wanted to do was go through this headache.

When I feel frightened, confused, and helpless, it’s easy for my frustration to sharpen into rage and fury. In those moments, it’s not only hard to see how things might work out; it’s hard to imagine why it’s worth even trying.

It can feel easier to resign myself to hopelessness than to believe that, even with the odds stacked against me, I still possess some agency. This doesn’t necessarily mean that I need to take matters entirely into my own hands; in fact, it can mean the opposite.

After getting nowhere with the airline, I had no choice but to figure out what to do about my situation. This meant calling my CF clinicians in the U.S., my travel insurance company, and my friends in Italy. Much like when I was hospitalized, people jumped to help me however they could.

More often than not, the people in your life want to be there for you, just as you want to be there for them. Perhaps you’ve wanted to help a friend who refused to let their guard down; you probably didn’t think of them as weak for going through a rough patch. By asking for help, we not only reclaim some control, but we transform our frustration into something much more tangible. I truly believe that leaning on others — and letting them lean on us — is how we make it through.

I think Jess and I will remember both situations forever. I suspect that even decades from now, I’ll shiver at the thought of the nasogastric tube, and we’ll recount our annoyance about losing my medications on our honeymoon. But I know that, immediately afterward, we’ll reflect on how much others helped us get through.

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Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.