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What I Wish People Understood About My Occipital Neuralgia

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I think I can, I think I can, I think I can …

To me, these are more than just words in a children’s book. Somehow, I have to muster up the ability to take my 3-year-old to soccer practice while simultaneously caring for his 1-year-old sister. This sounds like any other day in the life of a mom. But I live with what I call an “invisible demon.” A pain that is unimaginable to those who do not suffer with this condition. But no one sees it.

It takes every fiber of my being to get my kids ready and out of the house. The simple act of riding in a car can intensify the non-stop jack-hammering in my head. I vomit in pain.

At the field, I will put a fake smile on my face and give my usual happy sounding hellos to the other moms and dads. On a daily basis, I hide the agony from my kids and always give them a smile, while inside I writhe in pain. Today, I’ll set my chair off to the side of the field and try to make it look like I’m preoccupied with keeping my 1-year-old entertained when, in fact, there’s a hidden truth. I want so desperately to shout out to my son as he makes his first goal. But I can’t.

The secret I hide is that the vibration of my own vocal cords sends searing pain up my scalp and makes my eyeballs rattle painfully as if they were at the epicenter of a major San Francisco earthquake. To the other parents, I appear aloof and unsocial. 

My frame has withered down to 100 pounds because I’m so sick with pain that I can’t eat. I’m constantly nauseous, and the lightning bolts zapping through the right side of my head makes eating something I dread more than most people dread being covered in poison ivy.

I would love to run out and help the coach, but every step I take feels like my head is being slammed into a cement wall. Makeup covers the black rings that have sunken my eyes, and I’ve learned to fake a smile like nobody’s business.

This is the reality of my invisible pain, my invisible misery. My kids have a mother who is scraping by to make sure they are taken care of and safe. My reality is a chronic condition that can’t be seen, so others aren’t able to comprehend the magnitude of its life-robbing qualities. Occipital neuralgia. I hate those two words.

When my kids ask me tonight to read them a book, chances are the sound of my own voice will cause the vice grip on my head to tighten to levels that aren’t humanly possible. I’d cry over not being able to cherish all of their milestones, but it would just cause more pain.

Tonight, I will go to bed and my heart will do the crying for me, hoping that some day a switch will appear and magically give me a life again. I desperately seek to eliminate my title of chronic pain patient and restore it to just “mom.”

With support from good doctors, friends and family, people with occipital neuralgia can maintain some quality of life. New surgeries and treatments are emerging that are finally giving some pain relief. There are also numerous support groups online where you can connect with other people with occipital neuralgia. Through one forum, I found a surgeon who helped me.

Never lose hope and hang on to the “ride or die” people in your life.

A version of this post originally appeared on The Huffington Post.

Lead photo source: Thinkstock Images

Originally published: July 27, 2016
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