Why, No Matter What, I'm Not My Chronic Illness' Victim


Dear Dysautonomia,

Some of my friends have pet names for you. But I’ve never wanted to do that. Calling you something cute might give you the idea that I’d like us to be friends. I wouldn’t. I’d like us to be strangers.

I’ve had weaknesses in an area of my nervous system since I was a kid. And that was OK — just something about me I learned to make adjustments for. Those little quirks of my system — the fainting, the tummy aching, the tiredness — those things were just something to accept, like my lack of natural talent on the sports field. I had other strengths.

Then you arrived with full force. You came in through a window left open by a nasty virus. You turned my already wobbly autonomic nervous system against itself. You set up shop in my immune system and began to wreak your havoc. First, you had a go at my heart. They put in a pacemaker to limit your influence. Then, my vision, my digestion, my ability to go to the toilet. They gave me pills and potions, enemas and catheters. For every trick you pulled, we tried counter-maneuvers. Few of them were effective. You made it hard for me to regulate my temperature and threw in some dizziness every time I moved into an upright position. You drowned my days in bone sapping fatigue. You shifted my career well out of my reach. I felt so purposeless.

There were times when I even felt like you’d taken the best years of my life. A new marriage, the motherhood I’d longed for. These gifts were tarnished because I couldn’t be the wife and mother I yearned to be. I was angry with you for that. On behalf of the beautiful people I call my own, too. I was so angry about the freedom I’d lost to you, they’d lost to you.

I hoped. For six years, living with you, attached to my every move, part of my thought process. I hoped.  Someone will discover something, I thought. Medical advancements are happening all the time. Maybe they will identify something important in their minuscule research studies. And they are. Little by little the scientific community is inching its way towards something. I found a keynote presentation by a neurologist in the U.S. A man who’s studied autonomic ganglia for years. It flicked a switch in my brain, and I began to see.  There might be a way to finally let you know, Dysautonomia. You’re not welcome here.

And now, I’m on a promising pathway; I’m getting the movers in. I just wanted to write you a little letter as we approach your eviction. Like a victim impact statement. All those things above, they’re painful facts about why I don’t like what you’ve done to me. But there are other facts too. Surprising gifts you’ve given, even as you’ve be rampaging through my life.

You taught me I could find things out. Figure things out. Things way beyond my artsy brain. You led me to patient groups where I’ve found some of my staunchest friends. And you forced me to rearrange my interior self. To consider who I am and what I want to be remembered for. To identify the things that really matter.  To let the people I love know how I feel. And you gave me back a gift I’d dropped a long time ago. You made me write again.

I don’t know why it takes hardships to gain insight. But it does. Being sick with a chronic illness, dealing with you, Dysautonomia, seems like too harsh a price to pay, but I would pay it all over again. To learn what I’ve learned, to become who I am becoming. I would like to tell you that although I don’t like you, didn’t want you in my life and would dearly love to see you go, I’m grateful to you. You’re my shortcut to wiser living. A portal into a new and better me. 

Thanks for that.

I also want you to know, that even if I can’t eradicate you from my life, I will always be, 

your ex-victim,

Rach 

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

JOIN THE CONVERSATION

Related to Dysautonomia

To Each Illness I've Had to Fight, This Is What You've Taught Me

Dear Illnesses, Enthesitis– You are my oldest constant companion. For years no doctor could find you and yet I was well aware of your presence. At age 10 you started to attack me, stripping me of my active lifestyle. But, for all you took away from me you have given me just as much if [...]

Why the ‘R’ Word Is Not ‘Just a Word’

Every year, I try to create a post highlighting why I feel it’s important to support and practice the “Spread The Word To End The Word” movement. In an attempt to sum up just how I feel, I’m going to redeliver last year’s post with a few changes. We live in a society where having [...]

To the Mom Who Asked Why a Down Syndrome Diagnosis Is a Great Thing

I read a question today another mom posted. She recently gave birth to a child with Down syndrome. She said she’s constantly told her life will change forever and how great it’s going to be from now on. She wonders why. She holds so much fear of the unknown and is genuinely interested in why it’s so great [...]

The Sweet Reason Adam Levine and Maroon 5 Got Down on the Floor With This Boy

Christopher Warner, a 10-year-old Maroon 5 super fan with Down syndrome from Howard County, Maryland, just had his dreams come true. Last week Christopher’s teachers helped him make a YouTube video about his love of the band in the hopes of getting him the chance to meet them. Soon, local radio station Hot 99.5 got [...]