Wiggle Your Big Toe

Daylight pierces my vision and I flutter my eyes through sleepiness. I’m still cozy and wrapped up in my blankets. I have one foot in my dreams, but the other is inching toward the waking world. My senses slowly start to awaken with me, but there is always one sense fully in gear well before I am. As my pupils adjust to the morning light, I am trying to mentally and physically adjust to the pain that overtakes my entire head. It is always the worst in the mornings, though I’ve never understood why. The pain is an overbearing wave that engulfs me. I always feel like I’ll never make it out of bed. The promise of another day has just been fulfilled, but I am already deflated.

“Wiggle your big toe,” is my morning mantra ever since I saw Kill Bill Volume 1.

“Wiggle your big toe.”

Get up. Push through. Be productive. Get to adulting.

“Wiggle your big toe.”

Find the will to move. Summon the motivation to sit up. I need a cup of coffee.

“Wiggle your big toe.”

For 16 years I have gone to sleep in pain and woken up in pain. Living in chronic pain is exhausting. Having a disability no-one fully comprehends makes living with it difficult and lonesome. It is extremely scary for me to declare publicly “I live with this condition,” when I have spent more than a decade perfecting my performance of hiding it from the world. Hiding it has always been easier than explaining it, but here goes nothing.

My condition has been classified as Chronic Daily Migraine. It is theorized that is the result of how I was placed in the womb, as a twin. The best working theory to explain why or how this happened is just that, a theory. I still don't really know. Maybe I'll never know. So here's the best guess multiple doctors and I have come up with; I have a pinched nerve in my brain stem, my Trigeminal Nerve. This pinching didn't occur until puberty, as a result of bone growth and development. Since then, I have had a 24-hour, 365 days a year, for the past 16 years. 

Chronic Daily Migraine/Headache is a tough diagnosis to carry. Migraines are still very misunderstood in the medical community. As a consequence, I went through over 2 years of hospitalizations, every scan and test imaginable, and every treatment possible offered by both Eastern and Western medicine just to prove my pain was real, not psychosomatic or the result of medication abuse. It was also during those 2 years I consistently hoped every test would reveal something or each new treatment would magically cure me. After those 2 years, I stopped getting my hopes up with each treatment and test. To this day I remain open-minded to new treatments, tests, and theories but it protects me to approach each proposal with realistic expectations and remain emotionally neutral, not to be crushed over and over when things remain the same.

Migraine sufferers know that migraines come with any number of side effects, depending on the type of pain, the location of the pain, and the intensity of the pain. My side effects include light sensitivity, noise sensitivity, nausea, dry heaving, dizziness, exhaustion, blurred vision, loss of appetite, halos, and all out incapacitation. I deal with most of these daily.

I never know what kind of reaction I will get from someone if I decide to share this diagnosis with them. I have received an array of reactions ranging from “I’ve never had a migraine, but I can’t imagine living with one is that bad,” to “I don’t know how you function.” In high school, I had teachers and other authority figures lecturing me that if I was sick, I needed to act sick, look sick, and be sick, but this lecture was not for my benefit. They didn’t have my interests at heart or true concern for my well being in mind.  It would make ‘my situation’ easier for people if I looked the part, since there is no external, physical evidence of my ‘being sick.’  But when I presented myself honestly, sick with something unknown and complicated, I was alone and isolated. So I rejected their lectures and learned a completely different lesson. Perhaps it was not the lesson they intended to teach at that young age, but it has repeated itself over and over none the less. When someone asks, “How are you?” They don’t really want to know. They are just being polite.

I’ve read many stories of people living with disabilities. Most of them are inspiring stories of triumph, overcoming adversity, finding faith and God, and accepting themselves as they are.

That is not my story.

If and when I have overcome adversities, it is basically because I’m too stubborn to let the alternative occur. I lost my faith and belief in God. I still struggle to accept this part of myself that I often times hate. 

If a person is the sum of their experiences, then I can’t say this chronic condition has ruined my life. It has foraged an arduous, sometimes grueling, path that I have stumbled through, but I'm stumbling through. I wouldn't be able to walk or stumble without the love and support of my amazing family. If I had walked a different path, I wouldn’t have met my husband, who is my everything. I wouldn’t have the most loyal and amazing friendships that make my world brighter.  I wouldn't be who I am today.