“They Keep You Alive” – Emily Schaller

Earlier this week, as I was managing my YouTube channel, I came across a bunch of videos created about, for or by people with Cystic Fibrosis. One of the videos stood out to me, so I clicked on it. That led me to more videos created by the same person – Emily Schaller – and I clicked again.

Emily, who she admits that she resembles Ellen (yeah, that Ellen), is a bundle of jokes, insights, positive energy, determination and sheer brilliance. She has a characteristic and unmistakable laugh. I watch several videos, which led me to her website, “Rock CF”.

This image on her page caught my eye – the colors, the visual, the message. I identified with her message. I connected with her sparkling personality. She spoke to me.

Copyright Emily Schaller

Copyright Emily Schaller

Well, not literally. I did contact her, and we chatted via email. I was honored to witness her strength, tenacity, humor and bluntness. CF is an ugly disease, yet the moment I saw her on her video, and heard her raspy voice interrupted by that wonderful laugh, I found goodness and beauty.

Fate? Destiny? Coincidence?

I had recently purchased and broken in my new walking sneakers, but getting to that point – again – wasn’t easy. This past weekend, I started walking again, and joined my hubby at the local walking trail. He took off, running his usual pace, while I kept at a modest 2 mph pace.

It’s funny, because I forgot that no matter how far I walked, I’d have to walk back, and ended up walking twice as far as I thought I could. Thankfully, I had charged my phone, filled up my pink water bottle (with ice!) and wore a hat to keep my head from getting sunburned.

I am never without my water, and now I have a cute bottle to carry it in!

I am never without my water, and now I have a cute bottle to carry it in!

This adventure was nothing new. I must have “started exercising again” a hundred times in my life. At first, “restarting” again this past weekend didn’t feel any different from all of the others, despite my hope that it would lead to regular activity. This time around however, something was different.
Screen Shot 2013-05-03 at 9.29.54 PMAlthough I was never athletically gifted or graceful, I was a cheerleader in junior high, performed (acting, singing, dancing) in musicals all through high school, and was a gym rat for most of my 20s. I’m pretty uncoordinated, and have no running form, but I can walk. Immediately following every surgery and during every lung-related hospitalization, the doctors had me walking as soon and as much as possible.

Mind over Matter?

I always say that I enjoy exercising once I’m doing it, but starting is the hardest part. It’s so easy to fall into excuses…

I’m too tired.
I’m in pain.
I have no energy.
It’s too hold/cold/damp/dry outside.

It’s so easy to say, no, not today. Years of infections, medical treatments, and old age have damaged most of my organs to some point. My medications give me side effects that zap my concentration, balance and alertness. The list of reasons excuses can go on and on, but should it?

Surely, I have many more physical obstacles than I did fifteen or twenty years ago (don’t we all?), but my mind is also probably ten times stronger. Heck, I have endured twenty-five hospitalizations, nearly a dozen surgeries, and countless tests and medical procedures. I’ve taken thousands of pills and injections. At home, I monitor my breathing capacity, blood pressure, heart rate, and blood glucose. None of these interventions are pleasant, and some are downright dreadful.

Somehow, thought, I got though them all. Somehow, I continue to handle each diagnosis, illness, and treatment, no matter how scary, painful or uncomfortable I feel. Screen Shot 2013-05-03 at 9.30.00 PM

I just admitted above that once I start moving, exercise feels good. No, it feels great! Challenging my lungs. Stretching my muscles. Taking just one more step. And another. And another. No, it’s not a matter of enduring the process, but enjoying it. Even the day-after muscle aches feel good.

There have been, are, and will be plenty of times when I simply cannot push my body any further at one particular moment. CF ravages the body in so many ways, but I’m not talking about those times. I am talking about those in-between opportunities when the mind can overcome the totality of my bodily symptoms.

Cue Emily

I often fight the allure of procrastination. Like I said above, it’s really easy to just not start doing something.

Screen Shot 2013-05-03 at 9.30.05 PM

Can I just ignore that? The message came to me at a time I needed it most.

I saw Emily’s poster. The sneakers looked a lot like my new sneakers, the ones that Ken and I searched for, to support a high arch and weak ankles, to walk on either or both trails or on a treadmill, and of course, in the right colors.

Electric blue with amazing arch support.

Electric blue with amazing arch support.

Who is Emily? She’s an amazing woman with CF who founded the Rock CF Foundation, a 501(c)3 nonprofit corporation. I found her and her work at the perfect time. I read through her website, and saw that she was selling t-shirts with the sneaker-lungs on the front. I just had to have one.

I went to Emily’s Facebook page and asked how I could get this on a t-shirt. She directed me to the place and I jumped right in, purchasing a tank-top version in pink and blue. I actually enjoy wearing tanks for working out, and I have planned to do a lot of that from now on. The one thing I’m bummed about is that I already committed to wearing my Team T-shirt for Great Strides, but I have no doubt that Emily’s shirt will serve as a huge source of inspiration to me.

I can't wait to wear this publicly!

I can’t wait to wear this publicly!

Having Cystic Fibrosis, we are often encouraged to exercise, even in the hospital when receiving treatments for frequent and varied strains of Pneumonia. I know that to some people, it might seem that if we could walk X distance and/or exercise several times a week, we must not be sick, but exercise for CF patients is just a piece a complex, aggressive therapy plan that will help clear our lungs, keep infections in check, and perhaps lead to a longer, better life. The fact that it’s difficult to achieve and maintain any level of activity means that we have to do it all the more.

“They Keep You Alive” – Emily Schaller

What has previously served merely as an interest has become an imperative. Lungs are a gift. So are our legs, feet, and the body’s ability to carry us. It’s our responsibility to use them as God intended.

Thank you, Emily, for reminding me how blessed I am. I promise to put feet where my mouth is!


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