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Finding My Brave

Finding My Brave

This past week I feel as if my bravery has really been put to the test.

Due to my recent pain spike, my treatment plan was adjusted and my pain medication was increased to 100mg every 4 hours (or 3x a day) and Tylenol as needed.  My previous dose (100mg 2x/day) did not leave me with many side effects, but this new dose caused a lot problems.  I would take it around 4pm and by 6pm it was difficult to concentrate, my head was heavy, my stomach hurt and I really did not feel like myself.  I hated this.  It made studying nearly impossible. I’d have to read the same sentence 3 or 4 times just to understand it.

The ridiculous part is that my pain significantly improved while on this dose, but the side effects made me feel so awful I couldn’t even benefit from this result.  I reached I point where I knew the side effects weren’t going away and it was back to the drawing board for a new medication.

I felt like I lost my bravery during this medication adjustment period. At a certain point, constantly feeling like crap started to wear down my mental toughness. I was tired of fighting my body.  I was scared and worried that nothing would ever be a good solution to my pain. I didn’t want to go back to a new medication. These thoughts did not make me feel brave.

I took to writing to search for clarity on this feeling and started my writing process by reading some quotes. It was then I realized bravery doesn’t mean you aren’t scared. Bravery is being afraid and still moving on despite the fear. You are human.  You have feelings and vulnerability within you.  It’s equally as brave to admit you are tired of the fight and need a break, as it is to forge head on into the fire.

The world is filled with scary and difficult things.  I don’t know why I often tell myself that being afraid means I’m no longer brave. Because you know what? I am scared.

I’m scared of medications that make me feel like a shadow of myself.

I’m scared we will never find solution to my spine pain.

I’m scared about the lack of research for EDS.

I’m scared of having a rare disease.

I’m scared of pain, even though I face it every day.

So yeah, I’m scared.  But when I fall, I always get back up.

I might be scared now, but I’m still brave.

Fighting Through the Flares

Fighting Through the Flares

“Fans, for the past two weeks you have been reading about the bad break I got. Yet today I consider myself the luckiest man on the face of this earth.”  – Lou Gehrig in his “Farewell to Baseball Address”

I have been struggling health-wise with the transition back to college from winter break, but for some reason Lou Gehrig’s speech keeps coming to mind in the midst of these struggles. It’s easy to get stuck in a rut of negative thoughts when I’m not feeling well, but Gehrig’s speech reminds me that despite EDS, I have been living quite a lucky life. On hard days I strive to channel the strength and confidence Gehrig had when giving his powerful speech. Because if you look around, we are all pretty lucky to be here.

Lou Gehrig’s “Farewell to Baseball Address” is one of my favorite speeches in history.  Gehrig gave this speech as a way to announce his retirement from baseball after being diagnosed with ALS, a progressive, terminal disease that would ultimately take his life less than two years after this speech.  This speech captures the essence of getting a bad break and not letting it define you. Every single time I read the speech, I am left in awe of the strength and courage it took for Gehrig to get up and speak about being forced to leave the sport he loved with such poise and confidence.  He could have easily spoken about how terrible his life was, but he chose to make it about happiness.

Being diagnosed with a disease or illness doesn’t alter your ability to love your life. There is no need to feel immensely sorry for people with a disease or illness, as our lives have the same capacity for happiness as anyone else’s. It might look different from yours, but it’s still there. If you are newly diagnosed it might not feel this way, but if you look close enough at your life you might be surprised at what you find. Gehrig talks about the things he finds “lucky” in his life and they range from playing alongside the greatest ballplayers to simply having a mother-in-law who takes his side (against her own daughter) in friendly squabbles. He shows us that you don’t have to have it all to have it good.

I’m sure Gehrig wasn’t just blindly optimistic after receiving his diagnosis, he probably had his dark days and times when he struggled to cope with the reality of a terminal disease.  However, he decided his legacy would be of courage and optimism.  He decided to view life on his terms, not ones set for him by ALS.

It’s stories from other chronic illness warriors, such as Lou Gehrig, that keep me motivated to fight through the flares. As Gehrig said “I might have been given a bad break, but I’ve got an awful lot to live for.”

Visit: http://baseballhall.org/discover/lou-gehrig-luckiest-man