What It's Like Having a Migraine for 243 Days
I work in an industry that never sleeps and is filled with bright lights, broadcasting.
I am a master multitasker, a director to be exact. I am the one who steers the ship and controls it all. I am the safety net that catches every mistake everyone makes to be sure we do not mess up on air. I am the one who puts everything on air. I am also a migraine warrior.
I direct at least 10 primetime shows a week for my local NBC affiliate. During each show, I watch over 30 monitors at once while keeping track of everything that is going on and everything that could go wrong, and plan what to do in case it does go wrong. At any given second I have about five back up plans in the back of my mind ready to execute just in case. Believe me when I say it is not easy keeping track of everything when your brain is constantly under attack.
Since October 26th, 2016, I have had over 243 straight migraine days (you don’t forget the day your life forever changed). Not bad headache days. Migraine.
Migraines are so much more than just a bad headache, in fact I’ve grown so used to the pain that I barely feel the head pain… that doesn’t mean I barely feel the migraine, though.
I watch my vision morph into double, triple vision as floaters and jagged lines dance around my field of view. I feel the partial seizures and twitches and jolts that I can’t control. I hear the loudest ringing become even louder and my heartbeat pounding in my ears. I feel the light making me sicker, each passing second I wait to put on sunglasses becomes one second closer to throwing up. I feel the feeling escape my limbs and losing all balance and coordination. I smell the smell I can’t describe, but know it’s the red flag of monster attacks. Words stay on the tip of my tongue and I cannot keep up with how many escape my vocabulary as I lose grip on reality during the peak of the attack. Walls close in on me as my depth perception becomes nonexistent.
I have had chronic migraines since I was 16, but when this round of severe daily migraines began, I’ll admit I was scared. Failed by multiple neurologists, I decided a trip to the hospital was needed… that trip failed me too. So did my last trip to the hospital, where I was discharged with papers on how to treat “headaches.” Boy, if only I had just a headache! Despite hospitals and neurologists not taking migraines seriously, migraines are a seriously debilitating neurological disease.
Migraines are also a life changing disease. There was one point when I had my eyes set on the ultimate prize in the broadcasting industry – work on a primetime show in the number one market, and my hometown, New York. But my memory isn’t what it used to be after over 240 straight migraine days. My vision isn’t what it used to be, although I can still see my dream fading away. But life neither slows down nor stops for a migraine; what is worse, reaching your dream and failing due to your health, or just finding a new dream? I chose a new dream; to be an advocate for those who, like me, struggling in silence while their body wages a war on itself while still directing at my current station. I refuse to let migraines dictate my life. I refuse to take migraines lying down. As I said before, I am a migraine warrior. If you see me out in public smiling and laughing, know I am there, migraine and all, loving the life I fight tooth and nail for every single day.
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Thinkstock Image By: Natalia_Kalyatina
Marie D.L. is an artist, motivational speaker, journalist, digital creator, and Patient Advocate Leader that has been in the media for almost a decade, and uses her skills and expertise to help others grow their advocacy or organizations. She is the founder of R.A.R.E. by Marie D.L. and the creator of The R.A.R.E. Community. Through R.A.R.E. and The R.A.R.E. Community, she seeks to empower and spread visual representation of medical conditions. The R.A.R.E. Community is a social networking site she created that is separate from all other social media platforms, and is meant to connect warriors with a chronic, invisible, mental, or rare disease. She made The R.A.R.E. Community to be a safe place for patient advocate leaders who want to meet others with similar conditions in a positive environment, while keeping divisive and harmful topics not related to accessibility out. She offers graphic and other creative services, AV production, as well as professional collaborations as a way to put a name and face on disability. Her personal advocacy work focuses on sharing the experiences of a disabled woman in the media. You can find her on Instagram @r.a.r.e.advoc8, and join the R.A.R.E. Community at www.rareadvocatesrepresentingeveryone.com
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