Good grief, it’s time to return to raising PH awareness

It’s been a while. Do you remember me? I fell silent in June 2023 after sharing a column titled “How I am coping since my husband passed away.”

I’m an only child to aging parents, Mom, 86, and Dad, 94. When my husband, Brian Steele, died, I moved to New Jersey to take care of them, leaving behind, in Washington state, my home and my son Aidan, 23.

Caregiving isn’t new to me. Together with Brian, I’ve cared for our son Cullen, 24, since he was diagnosed with pulmonary arterial hypertension (PAH) in 2008 and underwent a heart and double-lung transplant in 2014. I lovingly honored my wedding vows of “in sickness and in health” and cared for Brian through several years of declining health up until his passing.

Now I think of myself as a coping caregiver, coping with grief, change, uncertainty, and, at times, loneliness while I care for my parents. I’ve been busy, but also avoiding pulmonary hypertension (PH) awareness out of grief. Brian looked forward to my column every week. He comforted and encouraged me to reach deep within and continue sharing Cullen’s PAH and transplant journey and our experiences as his caregivers, with the hope of helping others climbing those same hills.

Sadly, with Brian no longer here to share his perspective, the memories feel incomplete, and in many ways, so do current events.

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I didn’t totally abandon the PH community when my husband died. A few months later I returned to Pulmonary Hypertension News as a forums moderator alongside Jen Cueva. Not surprisingly, I continue to receive as much love and support from our members as I’m there to give.

If you haven’t already, please join the PH News Forums and find out for yourself, as a PH patient or caregiver, how dynamic yet comforting awareness and advocacy can be when you aren’t fighting for it alone.

The power of a nudge, a reminder, and a month

The forums are wonderful, but I’ve missed the therapeutic benefits of writing. A series of fortuitous events occurred that helped me find the courage to rise above my grief and return to raising PH awareness through my column.

Halsey Blocher, columns manager and SMA News Today columnist, reached out and inquired if I’d given any thought to returning. This gentle nudge helped me realize that it was probably time, but a reminder from Brian is what persuaded me.

In November 2020, he contributed to a special Pulmonary Hypertension News project called 30 Days of PH. Life lessons from Charlie Brown, a character from the Peanuts comic strip created by Charles M. Schulz, inspired Brian to write about the ups and downs our family had experienced because of PH. He shared how loss and hard times taught us to treasure the moments we have together, celebrate small victories, and look forward to good things to come.

The following quote, which Brian selected from the comic strip between characters Charlie Brown and Linus, foreshadowed how his version of our personal story would one day inspire me to continue telling mine.

Linus: “Nothing goes on forever. All good things must come to an end …”

Charlie Brown: “When do the good things start?”

Grief is like Lucy and my column the football, making me struggle to kick one off every week, but I’m feeling more optimistic that I can. Good things won’t happen without effort, and Brian always considered the “Life as a Caregiver” column to be a good thing.

November is PH Awareness Month, and I can’t think of a better time than now to start back up again.

The power of hope

Through the years my family has been inspired by others’ PH and transplant stories, and I’m paying it forward by sharing ours. Cullen’s journey offers hope to other PH patients and caregivers, especially those considering the scary option of transplant.

Cullen also moved to New Jersey but went out months ahead of me to get established with new doctors and make plans for his future. He was accepted as a junior to Immaculata University in Pennsylvania after years of online classes at Southern New Hampshire University. He’s survived health struggles post-transplant and the COVID-19 pandemic and is finally living in a college dorm. He’s already completed a minor in psychology and is studying hard to complete a double major in social work and sociology. His career goal is medical social work, inspired by many who helped him over the years.

On Aug. 7, Cullen celebrated 10 years post-transplant, and on Sunday, Nov. 17, he will turn 25. How good is that?

Through my column I’ve often helped others share their experiences as PH/transplant caregivers. If you’d like to be interviewed, please contact me at [email protected].

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.