WHAT THE MOST SIMPLE, YET POWERFUL, ADVICE FROM MY DOCTOR TAUGHT ME

Emotional pain is like a summer storm. As you’re enjoying the warmth radiating from the sun, a dark cloud-covered sky arrives and indicates what’s about to come. Lightning strikes. Thunder claps. The earth shakes. And, you scramble to find shelter to keep yourself safe. Pain often works the same way. It’s unpredictable, damaging, and springs upon you when you least expect it.

A year ago today, April 2016, was when I experienced one of my most painful periods and deepest lows to date. Just like a storm, this period of my life left a mark- one that I have not been able to shake.

I had been hospitalized for another illness, but this time, it took a huge emotional toll on me. Over the past couple of years, my health had taken a steep decline as my disease progressed rapidly. (Thanks to Spinraza this is no longer the case!) I lost the ability to speak a single sentence without feeling winded. The energy it took just for me to speak affected my life greatly as my body was working in overdrive to do a simple, daily task. I was exhausted both physically and mentally and somehow coaxed myself into thinking that the next time I was to get sick would be my last.

I cried every single day in that hospital bed. I was irritable. I was in physical pain. I had tubes all entangled in me making me feel uncomfortable.Worst of all, I actually felt sorry for myself. I wondered what was even the point in trying. I was just so beyond tired of fighting.

However, several days into my stay, my SMA critical care specialist walked into my room, his eyes wandered around, and spoke the most simple, yet powerful, words that suddenly changed my perspective. (To this day, they still resonate with me.)

He looked at me and said, “I know this isn’t fun. You’ve been sick for awhile, haven’t eaten in days, and have a really uncomfortable tube up your nose and in your stomach. But, it’s 2pm, and it’s pitch black in here. Let the sun shine in. It’ll make you feel better.”

He walked to the back of my room, threw open the shades, walked back to me, and said, “I know this isn’t where you want to be. I get it. But, I also know how strong and stubborn you are. So, promise me you’ll keep those shades open, and I promise you’ll be out of here soon.”

He was right. I was strong (and stubborn as hell), but I had somehow allowed circumstances that were out of my control to control me. For the first time in my life, I felt like a stranger in my own body. I wasn’t that girl nor did I want to be her. And, as the sun began to radiate into the cold, dismal hospital room, I began to feel lighter- a shift of energy began to take place. That was the moment I realized my thoughts and feelings needed to change. I needed to stop playing the victim and start recognizing the resilient power I had hidden inside of me.

Of course, it’s important to let your negative emotions ride out. Scream, cry, feel sorry for yourself, and just plain ol’ hate life. Be bitter. Be angry. Be anything you feel like being because you’re entitled to feel whatever it is you want to feel. But, there comes a point when you have to realize that these emotions you’re feeling are not in control of you. Instead, you are in control of them. Knowing this, I came to realize from his advice, is the foundation for overcoming any and every “storm” of life.

Storms, just like pain, are messy, but that’s just their nature. They wreak havoc, cause destruction, and do everything in their power to destroy what once was. Every now and then, getting caught in the middle of a storm is a fact of life, but fortunately, they don’t last forever. The raindrops will taper, the clouds will begin to part, and the sun will start to shine again. Only then will you decide to rise above those negative feelings.

And, only then will you decide to open the shades and realize you are strong enough to let the sun shine in again.

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Chronicling my journey while teaching the world that I have SMA, but it will NEVER have me. Life's what you make it, dare to make it a remarkable one✨

9 thoughts on “WHAT THE MOST SIMPLE, YET POWERFUL, ADVICE FROM MY DOCTOR TAUGHT ME

  1. I am so proud of you in so many ways! Your writing skills are incredible, the way you describe things, you make me want to read more! Your tenacity about fighting and winning to get yourself back home where you belong and where we want you! There is so much more I could say but I know I don’t have to, you know how I feel! Don’t ever give up my Alyssa, 😘MFA

  2. Alyssa… every blog amazes me..you amaze me on how insightful, faithful, beautiful (inside and out), strong and talented you are! I said it from the first time I met you and You still inspire me to be the best I can be! You have a beautiful gift for writing from your heart.. your beautiful heart!!!

    1. DAMN GURL IF PEOPLE DON’T FEEL INSPIRED BY YOUR WORDS AND YOUR POSITION IN LIFE THEY WILL NEVER FEEL INSPIRED BUT ME ION THE OTHER HAND WANT TO THANK YOU FOR YOUR AND YOUR DOCTORS WORDS OF INSPIRATION. IT TAKES INNER STRENGHTH AND CONFIDENCE TO FEEL THIS ALSO …GLAD YOU HAVE IT ALL . GOD BLESS XO JULIE

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