Eating Dark Chocolate While Searching for Good PH Memories

I love dark chocolate: the complexity of the rich flavor, the bittersweet notes of cacao. Some say that dark chocolate is an acquired taste, not for everyone. As I write this column, I’m indulging in a square of hazelnut and coffee-flavored dark chocolate and thinking about memories.

The chocolate was a holiday gift from a dear friend with whom I’ve shared many good memories during a relationship sustained for over 20 years. Good memories are the building blocks that lift up many of our personal relationships. They’re like the shoulders our friendships stand on as we move through the years. Good memories prop us up when life deals us a tough hand.

Living with a progressive rare disease like pulmonary hypertension (PH), which affects the heart and lungs and sometimes leads to heart failure, certainly falls in the “tough hand” category. Navigating life with PH means good days when my energy levels might top the chart and bad days when excessive shortness of breath or other side effects leave me in a puddle of exhaustion. I bounce from taking medications, refilling prescriptions, and getting new medical equipment to managing side effects, getting enough rest, and attending various doctor appointments and exams.

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After my diagnosis in 2016, I struggled to hold on to any good memories that might buoy me at a moment when a disease I knew nothing about left me feeling untethered. As doctors urged me to prepare for a “new normal” with PH, any memories — good or, for that matter, bad — of the person I was in the years before diagnosis seemed temporarily useless.

I’d planned to create many memories that had nothing to do with this new disease: countries to visit, meals to eat, jobs to earn, concerts to see, and books to read. You get the idea. I wondered at the time if all those memories would fail to materialize, only to be replaced with memories of PH-related flare-ups, bad hospital food, episodic anger, bloody noses, and other trappings of this disease.

Memories are on my mind because this Thursday is Good Memory Day. It’s a reminder to reflect on memorable moments, celebrate enduring friendships and family relations, and set plans to spend time with loved ones and make more memories. The start of a new year also offers a tabula rasa of sorts — a blank canvas to paint 12 months’ worth of memories.

I don’t know if I’d readily put PH and “good memory” together in a sentence. Memories associated with chronic illness can sometimes have negative tones or remind us of traumatic medical experiences. It’s been nearly seven years since I left a Washington, D.C., area hospital with an oxygen tank and a list of prescriptions. Reflecting on that 2016 hospitalization and life with PH since, I find the memories are better described as more bittersweet, like the chocolate, than good.

A chronic illness is life-altering, and the journey to get a proper diagnosis can be painful and frustrating. That was my experience, something I share with others with PH who’ve had delayed or missed diagnoses.

It’s hard not to be bitter after enduring multiple tests, doctor appointments, and pokes and prods, yet hearing no answers for why I can’t walk more than two blocks without gasping for air. Struggling to breathe, figuring out how I’m going to afford speciality prescriptions, and having low energy levels dictate my social life: Those are just a few stressors of managing PH that can feed bitter memories. I feel bitter when physical symptoms prevent me from doing something I’m more than mentally prepared to do.

Bitter memories can also be a trap. It’s so easy to focus on all the negative aspects of this terrible disease; it becomes almost impossible to balance things out with anything sweet. But then memories of the intensive care unit and respiratory nurses who took such excellent care of me over the years put a smile on my face.

I think of laughs and games of hangman with my mom in doctors’ waiting rooms even before PH was part of the picture. I remember people I’ve met doing advocacy work on behalf of the entire PH community, and the opportunities I’ve had to raise awareness about the disease while making friends at the biennial Pulmonary Hypertension Association conferences. These are the memories to hold through every six-minute walk test, blood draw, and tough day.

A bittersweet PH-related memory isn’t wholly bad. It can still have plenty of good, especially if you add a little chocolate. Readers: I’m curious what memories we’ll make this year.

Follow Mike Naple on Twitter: @mnaple.

Note: Pulmonary Hypertension 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 Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.