This post was developed in collaboration with Celgene Corporation. All opinions and thoughts are my own.
It all starts with an idea.
It was 4:15 a.m. when my alarm musically chimed and obnoxiously buzzed and loudly announced the time over and over again until I fumbled for the snooze button. Although I was excited about my day, I winced at the time and felt like the only thing that should really be getting me up at 4:15 a.m. on any day was the promise of boarding a flight to the islands. I closed my eyes for a moment longer wishing to hear the crash of a wave and opened them again hoping to catch a glimpse of sand through the small crack of light streaming in through the curtains. Nope, not today. Today I was in a hotel room, in New Jersey. Elated anyway because I was on my way to something so incredibly cool that the super early morning wake-up was totally fine with me.
Seeing as I had only one hour to get to the lobby to meet the team, I ran through a condensed version of my morning routine. Down a glass of water and my morning supplements. Ten minutes of meditation. Ten minutes of stretching. A quick journal entry. Wash the face. Prep my outfit. Do the hair. Don’t worry, I showered the night before to help save time and not over complicate my morning. As someone living with MS, the simple act of showering often requires sufficient rest time after to recover from the energy spent on said showering. True story.
And somehow on this morning in the high tide of summer when the temperatures typically just ride the 90’s, we lucked out with a crystal clear, non humid 65-degree morning with no more than a whisper of a breeze.
It was shaping up to be the perfect day for a hot air balloon ride.
Bumblebee the Yellow Scooter and I were attending the QuickChek NJ Festival of Ballooning. Yes. I was going in a hot air balloon and I was going to love it.
I told myself this over and over because…fear of heights.
My focus at this festival was as a patient spokesperson for The MS MindShift initiative with Celgene and the MS Association of America.
The MS Mindshift is a multi-faceted initiative that shifts the way we think about MS back up to the brain, where it all begins. It was also a fantastic opportunity to explore something new. You can live an adapted life in a limitless way. I share my story for this purpose, to encourage others to keep exploring. I can no longer walk on my own without the use of an assistive device. For me this means a walker inside my home and a scooter everywhere else. Bumblebee is my yellow travel scooter that adventures with me wherever I go.
The MS MindShift built their own hot air balloon that is wheelchair accessible. And it was the only wheelchair accessible balloon at the festival. Accessibility is possible when you push the limits. You have to start somewhere, and it all starts with an idea.
Noun. A thought or suggestion as to a possible course of action.
I mean, technically everything starts with an idea, but sometimes you sit back in awe of something you admire so much and wonder, where did this all begin? One single idea that brings together many brilliant minds with many more brilliant ideas that somehow becomes what it was meant to be in the first place: a wonderful idea that was imagined, meticulously calculated and executed, that came to life exactly when it was supposed to.
How many times have you said, “I wish I would have thought of that”?
Sometimes though ideas get hampered by…life, in short. By logistical issues. By lack of resources either financial or of the material sort or of the human kind. By chronic illness, like multiple sclerosis.
Multiple sclerosis presents itself uniquely in everyone who lives with it and often takes a progressive course at some point in time, varying in severity and onset. For me, I went from strolling to rolling just eight years after my diagnosis. How do you fulfill your dreams when your time suddenly gets filled with doctor’s appointments, do-it-yourself medical research and incessant worry about your future? It feels like a forced pause on your life. I struggled with this for a few years because there wasn’t a definitive start and stop as it relates to my walking. It was a slow decline, one that I tried to hide for a long time. I didn’t want to believe that I was struggling, and I certainly didn’t want anyone to see it.
To imagine the lengths I went through to hide my limp, cover up my cane, and find the shortest distances anywhere I had to walk avoiding curbs and hills was absolutely crazy and all-consuming.
Battling the actual illness was only one part of my personal struggle. Accepting the multiple sclerosis diagnosis and further accepting my life in the moment as a disabled person who needed mobility aids were other hurdles to overcome. A three-pronged wobbly stool that I was sitting on top of not knowing whether to cry or laugh. If I cried, was I giving up? If I smiled, was I giving in? The beauty of ideas and dreams though are that they release that pause button. Pause doesn’t mean you have to stop. Rethink. Retool. Rebuild, maybe. Just don’t stop. Keep going. While acceptance is key to moving forward, taking an action is crucial. I grew to love the independence and freedom that using my mobility aids offered. A burden of guilt lifted, and my confidence returned when I stopped associating needing help with weakness. I didn’t want to need them. I just finally learned in time that peace was living my life as it is not as I thought it should be. I needed to make the connection that my true definition of living well meant fully exposing my disability by using whatever adaptive device I needed to explore, travel and have fun.
That was my defining moment.
And so, my mind wandered under the umbrella of the gorgeous blue sky. I felt so lucky to be among the balloons on such a beautiful day, representing an important initiative for a chronic illness that I live with, and have found a way to thrive with as well. I had never been this close to hot air balloons and didn’t realize how massive yet lovely and intricate they really were.
The burner let out a loud hiss that made me jump and then flinch as a brief but intense heat wave descended from the flames firing up above. I looked up into the expanse of the hot air balloon. A few thoughts drifted about in my mind.
This is amazing.
Still scared of heights.
But this is amazing.
The pilot was talking. The burner was hissing louder and longer. 120,000 basketballs can fill the balloon. A hotdog will cook in 6 seconds on the burner. His voice drifted off. The basket floated off the ground. I scanned the ground below and the sky above only vaguely listening to the hot air balloon lesson. I felt free.
And safe because the hot air balloon was tethered.
An idea. A light bulb. A hot air balloon. The brain bulb. An initiative aimed to shift our perspective up to understand the critical role the brain plays in MS and what we can do to keep the brain as healthy as possible for as long as possible.
And this is where The MS MindShift literally elevates the conversation. The MS Mindshift aims to highlight three things:
The brain’s important role in MS
Brain health and neurological reserve
Positive lifestyle choices
I started this story with my early morning routine on purpose. It is something that I never skip no matter where I am because the components to my routine are a vital part of the lifestyle choices I have made to keep myself living as healthy as possible with MS. There are so many ideas that you can adopt to keep your brain healthy wherever you are in the course of your illness. Remember an idea is a thought or suggestion as to a possible course of action. Take the action. That is your next step. The ability to come up with new ideas is not taken from us. Remembering them might get tricky because…well, brain fog or other cognitive issues I was initially presented with leading up to my own diagnosis. I couldn’t finish a sentence, but I sure did have some good ideas! Sorry, a little MS humor there.
My confidence using my mobility aids was only enhanced as I took control of my life back – the lifestyle choices that I made as a promise to myself that MS couldn’t touch.
Those choices are the ideas, the dreams, the actions that will help you too. Getting back in touch with myself and knowing that I was strong even though my legs were not was a renewal of my happiness. I can still try. I can adapt. I can. You can, too.
I went up in the hot air balloon three times that morning. I listened to the pilot’s same speech three times. I maneuvered myself and Bumblebee in and out of the basket three times. I felt short of breath drifting up off the ground three times and settled into the courage of overcoming a fear.
The hot air balloon. Acceptance, Me & Bumblebee. The MS MindShift initiative. It all started with an idea. And we’re all soaring to new heights.