When Serena Lawrence, the late BioNews senior columns editor, responded to my email about potentially writing for Cystic Fibrosis News Today and promptly offered me a columnist position, I was awestruck. This was the first concrete (read: monetary) endorsement of my writing. My hope with this column was to talk about polarizing topics in the CF community and shed light on the wide spectrum of different perspectives, while also discussing some scientific topics since my background is science-based. This column is my 14th — and it hasn’t gone exactly as I had hoped. Almost half of the columns have been about grief or my sister (I guess this could be in the “conversations” category, but still). In three months of writing this column, life has happened, as it so often does.
Dec. 12 marked nine months without my sister. It also happened to be the day of my CF appointment and is also the date of another — eerie — milestone. On that day, I was almost the same age Alyssa had been when she underwent her first double-lung transplant; approximately 24 years and 7 months old. I used a date calculator to count down to the days — as I said, it’s eerie. And I admit it’s a little strange I figured this out, but I’m weird with numbers, which is why I minored in math. That day wound up being one of the most overwhelming days of my grieving period.
The day of that age, 24 years and 7 months (and some) old, remarkably resembled mine and my sister’s lives on a small scale. I had my annual diabetes test (the past few had been borderline, but this one came back perfectly normal) as well as my regular CF checkup. My lung function has been mostly stable for the three years that I’ve been on Orkambi (ivacaftor/lumacaftor), and my doctor called it an excellent exam. My sister’s day was her double-lung transplant, after being on her deathbed for over four months. The juxtaposition of these days felt a little like cruel poetic irony.
I feel obligated to write about every milestone, to acknowledge them in some way, and to try to learn some profound message — as if nine months without my sister is dramatically different from eight months and 29 days. If I don’t acknowledge these milestones, I feel like I’m confining my sister, whose life was cut short before she reached 30, to my past, and relegating her to a different era of my life. I feel better after writing on these days, but I wonder if it is preventing me from moving forward in the grieving process.
Since I started grieving — a weird concept to even think about — I’ve wondered if I’ve been grieving “properly,” so to speak. I ask myself: Are these emotions normal? But the death of a loved one is a profoundly abnormal experience. We become so used to life with somebody that once they are gone, our brains are broken to an extent. I know in my heart that grief is abnormal, as it should be, but the brain doesn’t function well when you’re mourning, so it’s not a switch you flip to feel OK, magically.
When I write about my sister, I feel like I’m talking to her and she’s reading my words as I type them from over my shoulder. I feel connected to her. It doesn’t matter how I approach each milestone because there isn’t a “right way” to grieve. At the very least, the wrong way is by abusing some form of dangerous coping mechanism, but even then, we need to recognize that grief-stricken people first and foremost need compassion.
So maybe it’s true that when I started this column, I wasn’t planning to write about grief as much as other topics, but life happens, and we can’t control that. This column has given me a platform to talk about living with CF, and one of the realities of living with CF is that too many people die at a young age, so I feel that writing about this topic does make a difference. And, at the very least, I know my sister would be proud.
Follow Tré at his humbly named website www.trelarosa.com.
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 Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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