How Emily’s CF Journey Changed My Perspective on Health

We are thrilled to share a blog post from Bea Abbott, a close friend of Emily’s and the entire Kramer-Golinkoff family, as well as a special source of support and spirit for all of us at Emily’s Entourage! Thanks, Bea!

 

I am 22 and in college, and like most 20 somethings, I recently had my wisdom teeth out. I know, everybody does it and rarely does anything ever go wrong but nonetheless I was terrified.

Though my seldom health issues, if I can even call them that, have luckily thus far been mundane and routine ones, knowing Emily has become such an important part of how I conceptualize my body and health. As I anxiously navigated my wisdom-teeth-removal experience, I found myself relying on lessons I’ve learned from watching Emily traverse far murkier and completely un-age-appropriate health terrain on a daily basis. While I do not have any insight as to what it is like to struggle with serious illness, I do want to share some things I feel I have learned from knowing and loving someone who does.

I’m happy to report, the wisdom teeth are out; the experience, while painful, was decidedly not traumatic: but most importantly, my wisdom tooth extraction crystallized some powerful lessons I’ve learned from Emily and her CF journey.

Bea Em 1

Pay attention to your body when it’s being good.
Something small that I know I only started doing after I met Emily is trying to consciously take a minute in the morning or before you go to bed to say.. “wow, i feel fine.” Often we only pay attention to our body when something feels off, but since having met Emily, I try to appreciate those frequent moments, days, weeks, months where I feel absolutely fine. Those moments are an amazing gift and as such, they deserve acknowledgment and gratitude.

Get your flu shot.
I don’t care if you “never get the flu,” stop taking that incredible blessing for granted and get the flu shot every year. There is not a whole lot we can do to protect those we inevitably come in contact with who have compromised immune systems, so what we can do we must do — even if it is small and doesn’t come with a 100% guarantee.

When you’re scared, channel your inner Ea.
I like to think we all have a little of it somewhere in us. It’s that petite, feisty, well-dressed, articulate woman somewhere in you who is assertive but graceful and simultaneously incredibly strong and deeply compassionate. She knows how to compromise and listen but is unapologetic when it comes to stating her needs and preferences. I like to pretend that little lady is sitting on my shoulder whenever with I am in a situation where I am scared or where self-advocacy is necessary (the two often coincide). The dentist chair or the doctors office is no place to be coy.

Channel your inner Emily to help you sit up straight, ask whatever questions come to mind and speak candidly about your needs. I also find her quite helpful to invite to any event in which you are likely to be a baby about things like shots, IVs, having blood drawn, or inconvenient treatments or appointments… all things that are not fun but ultimately quotidian to a CFer. Yeah they suck and can hurt or be scary but if Emily can do it routinely, with your travel sized Emily on your shoulder, you too can brave the discomfort every now and again.

Address health issues head on.
One of my all-time favorite things about Emily is that this woman who faces on the daily a serious and progressive illness that causes all kinds of pains and discomforts I can’t even imagine still expresses genuine concern when you tell her you have a headache. Your health issues or concerns are not somehow null just because her’s are greater. So you shouldn’t think of them that way either. Sure your weekly headache or back pain or toothache is probably not life threatening, but that doesn’t mean you shouldn’t do what you can to deal with it in a timely manner. If a life without that pain is possible, do what you can to achieve it. It will likely take time and patience. It is always worth it.

Besides the flu shot (haven’t missed one since I met the KGs), these lessons are a work in progress, powerful things I myself have to keep reminding myself and striving for every day. I try to be conscious that good health is not something you get for life. It can change at any moment. And thus, I know sharpening these skills now will undoubtedly be useful tools in the future and heighten my appreciation in the present.

A very big thank you to Emily for enriching my life with these lessons and skills.

Bea Em 2

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