She is standing in the witness stand. The trial has been dragging on, but she is here for a very important reason. It’s time to tell the perpetrator exactly what impact their crime has had on her life. She’s been waiting for an opportunity to make her voice heard. Yet she doesn’t even know if her words will make landfall. Still, she has to say them. She takes a deep breath and begins to read a letter.
Imagine if you got the chance to tell your Diagnosis exactly what it has done to your life. If you were writing that letter, what would you say? What would your ‘victim impact statement’ describe? Here’s mine:
Some of my friends have pet names for you. But I have never wanted to do that. Calling you something cute might give you the idea that I’d like us to be friends, when I don’t think that is possible. I often wish I had never met you.
I’ve had weaknesses in my autonomic nervous system, since I was a kid. And that was okay; 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. Who needs basketball when they have books?
Then you arrived with full force. You came in through a window left open by a nasty virus. You made my already wobbly autonomic nervous system your target. You hijacked my immune system and made it your henchman. It’s been doing your dirty work ever since. You hid there, where they didn’t think to look for you. Sneaking around my nerve junctions, sliding out of view as one doctor after another searched for the reason behind my ills.
First, you had a go at my heart. They put in a pacemaker to limit your influence. Then my digestion, and my ability to go to the toilet. You made my extremities burn and numb in relentless torment. You troubled my focusing ability and pulled and pushed my blood pressure into a see saw of ups and downs. 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. The doctors gave me pills and potions, enemas and catheters. For every trick you pulled, we tried counter-manoeuvres. Few of them were effective.
There were times when it even seemed like you had taken the shine away from the best treasures of my life. My marriage and the motherhood I had 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. Angry on behalf of the beautiful people I call my own, too. I was so angry about the freedom I had lost to you; they had lost to you.
I hoped. For six years, living with you, attached to my every move, dulling my capacity to think. I hoped. Someone will discover something, I thought. Medical advancements are happening all the time. Maybe they will identify something important in those minuscule, sparsely funded research studies. And they are. Little by little the scientific community is inching their way towards something. I chanced upon a keynote presentation by a neurologist in the States. A man who has 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 very promising treatment pathway; I’m getting the movers in. I just wanted to write you this letter as we attempt to excise you from my life. My own victim impact statement. All those things above, they are painful facts about why I don’t like what you have done to me. But there are other facts too. Surprising gifts you’ve given, even as you have been carving your swathe through my autonomic nerve fibers.
You taught me that I could find things out. Figure things out, too, things way beyond my artsy brain. You led me to patient groups where I have found some of my staunchest friends. And you forced me to re-arrange 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 had dropped a long time ago. You made me write again.
I don’t know why it is that it takes hardship 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 have 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 am grateful to you. You are 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 never manage to eradicate you from my life, I will always be your EX victim. Because I can choose whether or not I continue to be victimised by your presence. And I choose a different perspective. To accept that every torment, is a teacher.