The internet is targeting me. In the past year or two, the ads that show up for me are anti-wrinkle face creams, Botox®, sensible loose-fitting maxi dresses, and exercises for bat wing arms. AARP is filling my mailbox. Friends, it’s happening. I’m turning 50.
My daughter recently asked me if my life turned out the way I thought it would when I was her age (18). Without hesitation, I replied, “Nope.” When she pressed further, I explained that I grew up as an overachiever with high expectations. I wanted to live in New York City with my husband and three kids while also managing successful bands or practicing psychology. I did not expect that having cystic fibrosis would prevent me from attaining all of that. I reminded her of the plenary I hosted at the Volunteer Leadership Conference in 2018, “When Life Doesn’t Go as Planned.” (Turns out my then-13-year-old wasn’t listening). She did get me thinking though.
When speaking in front of the CF community, I have proudly shared my signs of aging: strands of gray hair, faint crow’s feet, and smile lines. For someone born in 1973, when the life expectancy for cystic fibrosis was around 12 years, I felt I earned every gray hair and wrinkle in my early 40s. I have been fortunate. I went away to college and graduate school, started a career, found a life partner, and gave birth to two incredible children. I was grateful to share my life experience with parents and family members who saw hope in my CF story.
This is not to say it’s been all sunshine and rainbows. Far from it. Although I did not have exacerbations as a child, I had persistent nasal polyps leading to 13 surgeries. I was so scared of needles that a team had to chase me through the hospital to give me an IV and — annually — chase me into the bathroom stall for my flu shot. I still can’t lay my arm out straight, fearing someone jabbing me in the cubital fossa.
My older brother, Jason, was in the hospital four times a year for tune-ups. Although that was our “normal,” my anxiety over his health did increase the older we got. Two weeks before I turned 15, I was called to the hospital to say goodbye to him. Although time does heal, there will always be a Jason-sized hole in my heart. I still grieve whom he would have been and whom I would be if he were here, and my kids grieve the loss of an uncle and cousins that they should have had.
Despite my brother’s death, I never doubted that I would grow old. In my mid-20s, I was working in the music business, as planned. Suddenly, I had episodes where I had trouble breathing, felt numb, and had an erratic heartbeat. I could barely function. In 1998, you couldn’t Google symptoms. If I ate a PowerBar® and called my best friend, my symptoms eased, but these episodes began to happen more often and more severely.
One afternoon, I was on the office floor, calling my dad to get me. We went to my hospital. I underwent a week’s worth of tests only to find that I was suffering from panic attacks. The life expectancy of someone with CF was 27 then, and I was quickly approaching it.
Seeing a therapist was very helpful and long overdue! I continued hitting up against extended life expectancies, but I began to surpass them with less anxiety.
Throughout my early 20s, my lung function decreased steadily and in the next few years, my gastrointestinal (GI) symptoms increasingly affected my quality of life. I was plagued with distal intestinal obstruction syndrome, or DIOS. I would walk home from work chugging the laxative magnesium citrate. On my honeymoon, I sat with my new husband on our lanai drinking the laxative GoLYTELY® instead of champagne. I was in the hospital multiple times a year for tune-ups and GI pain.
One day, I called my doctor from work, doubled over in tears. She met me at the hospital where we made the painful decision that I stop working. I have made peace with it (sort of, not really). When my health has enabled me, I’ve accompanied my kids on school trips, joined PTAs, advocated for CF families, participated with the CF Research and Sexual Health Collaborative and Palliative Care Advisory Board (I’m published!), worked on CF Foundation Mental Health Research Priorities, etc.
I had hoped Trikafta® would start my life anew. When I started it, I took that deep breath I had been craving since hearing Emily Schaller speak about Kalydeco in 2012! However, days later, I was doubled over in stomach pain that lasted weeks. My left thumb joint hurt, and I couldn’t open jars. I reached for words mid-sentence but could not recall them. I have been diagnosed with gastroparesis and intussusception and added three new meds for that. I have been on a journey to figure out the joint pain in my thumb, my knees, and my hip. I have been to four different gynecologists about irregularities that could be hormonal but may not be.
With so many new health issues, I have become fixated on how CF plays a role as we age, especially since I’m on the front lines of people aging.
Last year, I developed a panel for ResearchCon, “Is It My Age or Is It My CF?” I valued weekly meetings with top researchers in women’s health, gastroenterology, and palliative care and tried so hard not to turn it into my own personal diagnostic … but I had three top researchers captive on Zoom every week!
Spoiler: There are no definite answers. As frustrating as that is for those of us with CF in our late 40s, 50s, and beyond — I met a 72-year-old last month — we have been on the frontlines of what aging with CF looks like. As my friends without CF joke about entering middle age (and I reflexively add, “hopefully,” to my husband’s distress), perhaps my aches, pains, fatigue, and brain fog are age appropriate. Maybe I should be grateful that I am having conversations about eye cream and perimenopause and that Instagram is suggesting I follow 40+ style influencers.
P.S. I hear maxi dresses are great for covering up CF belly bloat!
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