A wave of grief can bring sorrow, but also joy
A columnist remembers beloved friends and family who have passed
I was sound asleep at 3 a.m. on Nov. 25 when I heard my mother call my name. It didn’t sound like she was in distress; it was more like she needed help reaching something on a shelf in the next room. After I awoke, I had some trouble processing this. My mother passed away on Nov. 26, 2020.
When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, it was a surprise. For more than a year, I had attributed my cough to allergies, which I now realized wasn’t the case. As my disease progressed, my mother was with my wife, Susan, and me for every step of our journey until her passing.
I don’t know why I heard my mother’s voice. Grief is funny like that. However, it did happen near the anniversary of her passing, and I’d also recently returned from the Pulmonary Fibrosis Foundation (PFF) Summit.
During the summit, as the cadre of current and former PFF ambassadors gathered, we shared stories about those who are no longer with us. Because the event convenes only during odd-numbered years, it was our first time seeing each other in person since the 2023 summit in Orlando, Florida.
These stories introduced newer ambassadors to those who had passed. None of the stories was sad, though, as I observed smiles among the listeners.
There are no rules
Grief is not bound by time, seasons, lunar cycles, the calendar, or any other measurement. I have suffered loss in my life. My father passed in 1992, and my stepfather in 2021, the year after my mother.
Shortly after I received a bilateral lung transplant in July 2021, I was anxious to communicate with my donor’s family. My friend Jim Carns, a lung transplant veteran who’s had two single-lung transplants, urged me to wait. His words, “Grief lasts longer than joy,” were not lost on me.
I have come to understand what it means when people say, “Grief washes over you.” Imagine waves that arrive without warning and overwhelm your senses. There are days when they pass almost as suddenly as they arrived. Other days, they linger longer than expected. When I heard my mother call my name, grief washed over me, and I didn’t rest well the rest of the night.
Then there is the grief I anticipate every year. On the anniversary of the date and time when I received the call that lungs were available for me, I visit the National Donor Memorial in Richmond, Virginia. As I approach the entrance, I can hear the water cascading over the memorial, where donors’ names are carved into the walls. I grieve for my donor and my donor’s family. The memorial is where I feel closest to them.
All in good time
For those of you on this pulmonary fibrosis journey, you’ll experience grief and deal with it in your own way. I can’t tell you what steps to take, as what works for me may not work for you. When grief becomes heavy and dark and feels like it’s consuming you, I recommend you seek counseling. Therapy was certainly helpful for me.
Personally, I don’t want the grief I experience to stop. It may sound odd, but grief can bring joy, and memories that make me smile are refreshed.
I miss my mother. She always told me I wore my heart on my sleeve, and I know she would be extremely proud of what I am doing today and how I make every breath count.
Note: Pulmonary Fibrosis 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 Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
About the Author
John
Hi Sam
Thank you for this important post. I am a Vietnam vet, was diagnosed with IPF in Dec 2023 4 (was given 3-5 years to live when diagnosed - Ha !), life expectancy was reduced my my Dr to 2 years or under in Dec 2024 and and have been on the transplant list since July 2025.
A few years ago my Mom passed at age 86. A week before my.mother in law had passed at 99, she stroked out. So my wife made arrangements and had the funeral for her Mom, then a week later my Mom passed of COPD, and I made arrangements and for her funeral for her on Mothers Day, the same day I was notified, I was called by the rehab center where she was supposed to be rehabbing from a fall so she could go home and my wife daughter and I were at a Mothers Day brunch to take our minds off my wife's Mom passing. They called my and said your Mom died what do you want us to do with her body? We had no clue at all she was going go pass so soon.
Then my wife for her Mom's house and me for my Mom's house simultaneously and separately had to deal with the contents of our respective houses - both of us being the closest in town child of our Moms and being the caregivers for our Moms in their last couple of years.
Word of warning - my Mom and Dad divorced after being married most of their lives, my Dad was a Vet so was Jan's but her parents never divorced. We buried Jan's Dad and Mom at the Veteran's cemetery in our town, my Dad was buried years earlier there too. My Mom's body was st the funeral home next to that cemetery. After I made the burial and funeral arrangements and got home on Mothers Day Sunday, they called me and said - they're not letting your Mom be buried at the cemetery, I said why not? they said when your Dad died your Mom and Dad were divorced, I said -:that is insane, they were married most of their lives, please call them back an get an exception. They called the VA they called.me back and said there are no exceptions. Who will be picking up your Mom's body today? I said - I have no idea right now. I'll call a funeral home in her city and make arrangements, they picked up her body the next day on Monday and I had to go through the burial and funeral arrangements once again - this time it included buying a grave too.
So the above nightmare process required me to.put my grief on the back burner. However, when going through my Mom's furniture, clean thing and jewelry shortly thereafter I remembered my Mom wearing certain dresses, wearing certain jewelry and sitting on certain furniture and waves of grief hit me at various times during the process. It was a year until those waves of grief (mostly at work, and out of the blue) were gone. As a CPA and Attorney I work in preparing estate documents, estate administration and Probates.for 45 years and I always tell children of clients whose parent had died - let grief have its way, bottling it up causes stress and health issues.
John