So often when I’ve spoken about becoming “normal,” I’ve gotten several responses that all say the same thing: Normal is just a setting on the dryer. It doesn’t exist.
From a human perspective, this seems like a legitimate claim. There is no one way to get something accomplished. The majority of the time, there is no right or wrong – just a difference of opinion. We are all so diverse and that should be celebrated.
With having CF, though, the pressure to fit into societal norms is strong.
For years I did this. College was rough. Making it to class on time after doing treatments. Rolling out of bed after pulling all-nighters from writing papers because I procrastinated all week. Keeping up with the grueling speed of a social life. Typical college student routine.
Except, nobody saw the work I put in behind the scenes. They never did.
The same was true for adulthood. Working full time. Juggling the essence of CF which is another fulltime job that got exceedingly more difficult as I went along. Having a social life. Keeping up with everyone amongst failing lungs. It. was..really hard. Harder than I realized.
I never admitted how I felt each day. Family over the phone, friends in person…it was just easier to say: Oh yeah! I’m doing great! Meanwhile…I had been up all night coughing. My breathing was labored. My energy depleted. Pushing my exhausted body to function on zero, counseling children all day, fitting in multiple treatments, eating twice the “normal” caloric intake, going to bed, interrupted sleep… rinse, repeat.
I was constantly striving for something that was unattainable – a normal daily routine. Nothing about my routine was normal. I had to tack on an hour to my morning because of treatments. The same with at night... And if I wasn’t feeling well, somehow squeeze in another one in between. I was exhausted before my day even began. I was running out of steam…
Almost two years ago I had to resign from a position that I loved. I worked until I was physically forced to stop.
The pressures from the outside were suffocating. I felt restricted in my own skin. Whatever I was doing… wasn’t good enough. I couldn’t keep up with other people my age or even older. The world around me was capable of working full-time, running a household, and having a family. I…could barely take care of myself. Trying to be normal was exhausting, frustrating, and out of my reach.
Thoughts ran through my head: Why can’t I just be normal? Why can’t my biggest worry be about where to get my coffee in the morning, instead of whether or not I’m gonna have enough breath to talk to kids all day?
When I went from working full-time to part-time, most people didn’t understand. I could feel the shift in my health and knew I needed to scale back or my job would kill me. At the time, other’s remarks were hurtful, but only because they were unaware of the magnitude of how sick I was: What are you gonna do with all of your extra time? Man, I wish I could work part-time and stay home more, too! You’re so lucky! Wow, you’re livin’ the dream!
It wasn’t a joy ride. It wasn’t so that I could sit on my bum eating bon-bons. And it wasn’t so I could have wild dance parties all day (although that would be a blast)! No, it was so that I could have more time for treatments. For resting my tired body from my overworked lungs… because a day with the kids kicked my butt something fierce. So that I could somehow push myself to be healthier than I was, as if the matter was in my hands to control.
With each new setback from hospitalizations, brought new normals for me. Acclimating to using supplemental oxygen all the time. Requiring more treatments. Using all of my energy to breathe. It was a constant learning curve.
Navigating the parameters of my body has been…challenging. Figuring out where my new set of limits is…interesting. Learning how to breathe “normally” was a difficult process. Having to deal with severe anxiety as a result of new medications, trauma, and a suppressed immune system was (is) the hardest thing I’ve ever had to do (yes, having the transplant itself was easier)!
What I’ve learn though…is that normal doesn’t exist in actuality. No two people are the same. Yes, we all have similarities, but there is no actual normal. It is merely an illusion. An imaginary reality that society has convinced itself exists.
Unfortunately, society puts us into this box, and if we don’t fit into this box then we aren’t considered “normal.” What society doesn’t teach us is that everybody has something that they are dealing with. Not everything goes as planned. And circumstances can change in the blink of an eye and derail the entire course of your life.
It’s taken a long time to dodge the restricting labels of normal, or to avoid them on purpose. The truth is, there isn’t a single part of my life that is normal. And that fills me with a ridiculous amount of joy. Why?
…because by being myself, it gives others the permission to be themselves too. It grants them the acceptance that comes from doing things differently. It encourages people to be their authentic selves, refraining from hiding their innards for fear of not “fitting in” to the status quo.
It’s also because if I never had CF, numerous hospitalizations, or a transplant…then I wouldn’t have met the most incredible people in the world. Literally, I have connected with people all over the planet because of what I’ve been through. Experiences that have brought us together. Love, support, and prayers that have held us together. That in and of itself makes my life richer, filled with love, and worth all the struggles. And the falling short of being normal… makes my life more adventurous, hilarious, and fun in the most ridiculous situations.
An ancient manuscript (the dictionary) tells us that normal means: Conforming to a standard; usual, typical, or expected. However, a wise teacher once said; do not be conformed by things of this world. So, that tells me that you’re doing it right if you are not fitting into the social constraints of society.
High five for being you!
Lara is 31 years young and resides in Vermont. She has Cystic Fibrosis and received a double lung transplant in August 2017. A beacon of light for the existence of miracles; Lara enjoys adventures, nature, and belly laughs with her loves. She believes Jesus walks and pants are the devil. Passionate about spreading encouragement, she always lends an ear to those in need.
Follow Lara here: www.facebook.com/Lungs4Lovey
Help Others Live STRONGER and LONGER-
***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation***
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