‘Look at Me, I’m Atrophy’: Being Chronically Ill at Halloween
I have always loved Halloween, but celebrating it with a chronic illness like cystic fibrosis has always meant having to be creative.
Being chronically ill meant having to spend a few Halloweens in the hospital or at home, but my mom always made the most of it so that I’d enjoy the holiday. She’d decorate my room with fall leaves and trick-or-treat signs. Because I had to take precautions and isolate myself because of my immunosuppression, I wasn’t allowed to leave my room. So, nurses would bring the party to me with goodie bags, and they’d decorate my walls with my classmates’ pumpkin-themed get well cards.
Of course, I also enjoyed being able to go trick-or-treating with my friends, but what makes Halloween the most fun for me are the costumes and getting to dress up and be creative. So, whether I was at home, in a hospital, or out with my friends, I was most happy being able to show off my costume.
Skeleton in my closet
For several years, I dressed up as a skeleton, foreshadowing the bone distress I would soon suffer from.
The problems with my bones stemmed from a lot of issues. I wasn’t properly absorbing fat-soluble vitamins, and I had problems with my blood glucose levels, so I suffered from poor nutrition. I also wasn’t getting enough physical activity. Overall, I was in poor health. When I was 22, I was diagnosed with osteopenia, which was upgraded to osteoporosis following a bone density scan four years later.
I even resembled a skeleton by the time I received a double-lung transplant in June 2019. My limbs were terribly atrophied, and my joints made more noise than the Rice Krispies elves, Snap, Crackle, and Pop.
I’m now taking alendronate for my osteoporosis, and six months of physical therapy after getting my new lungs has given me enough courage to be able to run around my block.
Columnist Nicole Kohr, right, strikes a Halloween pose in her hospital room at Robert Wood Johnson University Hospital during a visit from her best friend, Ashley Bock, in 2010. (Courtesy of Nicole Kohr)
An accessible costume
When I was using a wheelchair or had a catheter, I really had to be creative. It was complicated, but I loved the challenge, whether it was making an IV line work with my Hermione Granger outfit, hiding a port-a-cath in my Wednesday Addams dress, or weaving IV tubing through my Pippi Longstocking pigtails.
Of course, wearing white presented problems. Blood and mucus aren’t forgiving substances, especially when they end up on a white pirate shirt. But I suppose I could have just claimed they were makeup. It was the most authentic pirate costume at the award ceremony!
My experience with Halloween reminds me of the song “Look at Me, I’m Sandra Dee” from the hit musical “Grease.” It’s sung by a group of teenage girls who make fun of the leading lady, Sandy, because she is shy. I was never made fun of, but I do understand how having a different set of experiences can make someone feel like they don’t fit in.
I hope I get to trick-or-treat in person this year! I’ll say, “Look at me! I’m atrophy! Lousy with bone density!”
Come back every Thursday to read more of my story!
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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, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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Tim Blowfield
Great to hear that your lung transplant has given you back a life. But I still do wonder about every other cell in the body - they all have the faulty CF gene. The Osteoperosis is almost certainly at least in part caused by the faulty CF gene affecting your Parathyroids (P), the glands that control Calcium metabolism. With the failed Chloride channel Chloride will be high within cells and must be balanced with cations, K, Na, Ca and Mg) - high Ca in the P will affect Calcium metabolism. The new corrector/potentiator drugs should normalise such metabolism and should be tried in pwCf who have had transplants. High Potassium (K) and Ca are also likely to affect heart function and the Adrenal Glands. talk to your CF team.