Growing up with a terminal disease, it was not a secret that one day I would become disabled. What I didn’t expect was how messy the process would be. There’s no handbook or guide about how to become disabled. It’s not as though one day you wake up and cystic fibrosis doesn’t let you do life anymore. It slowly and methodically chips away at your life so you don’t realize that it’s being taken from you.
About five or so years ago, I noticed my disease starting to affect my life in many more ways than just needing to do daily treatments and occasional hospitalizations. My errands were becoming limited, my energy dwindling, and the hours spent caring for my body increasing. There isn’t an exact point in time that I can pinpoint as to when I became disabled. I’m not sure if it was the semester I took off from college, having to quit my serving job, the day my disability sticker showed up in the mail, or when I realized that a service dog was right for me. Even then, it was easy for me to reallocate my time or multitask to get everything accomplished. It didn’t come without a learning curve, but overall, it just took a little more creativity with time management than I was accustomed to.
Fast-forward to this past year and that time management creativity has essentially blown up in my face. I find myself just sitting and pondering how I used to do everything I did. I stare at my schedule to creatively fit everything in. Then real life happens, and I erase, reschedule, and rewrite that meticulously put-together schedule. I take on commitments as if my body were capable of what it was five years ago, and I’m left behind and constantly apologizing. I can’t help but be hopeful that the infections will ease up their relentless attack with each new treatment option. It’s hard to know exactly what my body can handle when that threshold is forever in motion. It can be incredibly taxing on the mind to feel like I am giving up on my dreams when there is still hope that they will pan out.
I am a career-driven, passionate person. Cystic fibrosis has driven me to pursue a lot of dreams that I probably wouldn’t have otherwise had. CF is also the reason I am not achieving all of those dreams. There are no guidelines to becoming disabled. No doctor will be able to tell you that at a certain lung function or point in your disease, you should be able to do this or you shouldn’t be able to do that. Each person is different, life is messy, and becoming disabled is ungraceful. We make mistakes and keep hoping that life will get easier.
Follow my not-so-graceful journey at The Living, Breathing Wendy
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.