To borrow a line from the Rolling Stones, please allow me to introduce myself. My name is Kerrie Brooks and I’m a mom to three boys, Domenic, 16, Rocco, 13, and Antonio, 9. I’ve been married for 20 years, am originally from Boston (please don’t let my love for Boston sports deter you from reading my blog), and have called Maryland home since 1995.
I’ve worked, I’ve stayed home to raise my boys, I’ve volunteered at school events, I’ve traveled, I go out with my girlfriends for much needed laughs and wine, and I love my husband. By all accounts, I’m your basic white girl, according to my snarky 13 year old. So what makes my story worth reading? I’m also a sick mom with a little known illness called functional neurological disorder (FND).
What is FND, you say? Have you ever heard the terms conversion disorder, hysteria or stress illness? How about psychogenic seizures or, get ready, demonic possession? They are all one in the same and are terms used over time to describe symptoms that aren’t explained by any organic disease. FND is the most current term on the books, and the least archaic and demeaning.
Put simply, my brain sends mixed messages to and from the rest of my body, resulting in a whole host of fun and weird symptoms. Why does this happen? One theory is a suppressed traumatic event or stress overwhelms the system, and in order to cope, the body shuts down.
Unfortunately (or fortunately, depending on how you look at it) I don’t fit into this box and so I can’t really answer the question why did this happen to me. All the tests in the world won’t prove that you have FND. In fact the opposite is true: Every test under the sun is done to rule out known diseases. When all those tests come back normal and the neurologist can’t find anything wrong with you, you are sent home with a FND diagnosis and a prescription to see a psychologist.
For me, this all started five and a half years ago, when I was 40. I had been experiencing sporadic migraines, which came with its own set of weird symptoms such as a zig zag prism in my eye, right -sided weakness, slurred speech, fatigue, stabbing pain in my head and the smell of burnt toast at onset. The last one was a doozy, so I called my husband at work. My older boys were at school, but my almost 4 year old was home with me. After losing my speech and collapsing on the kitchen floor, my husband called an ambulance.
I was scared to say the least, but my little boy showed such love and compassion in those moments before the ambulance arrived. He put his prized blankie under my head for comfort, patted my head and opened the door when the paramedics arrived. A police officer accompanied them and took Antonio up to his bedroom to occupy him, so he didn’t have to see me taken out to the ambulance. That officer stayed with him until my husband got home from work to take over. Antonio still remembers the nice policeman who played catch with his little foam football. I wish I knew his name so I could thank him.
After that event, similar symptoms took over my life in a continuous loop and have waxed and waned in degrees of severity over the past five years, rendering me disabled. Those symptoms include: numbness and tingling, slurred/stuttering speech, overwhelming fatigue, brain fog, non-epileptic seizures, gait problems (I sometimes use a cane or wheelchair depending on how wonky my step is), loss of balance, nerve pain, tremors, irritable bowel syndrome, loss of muscle strength, headaches and temporary paralysis. I’ve been told the symptoms are as debilitating as MS and Parkinson’s. I don’t wish this on anyone.
I’ve had no choice but to adjust to this new normal and accept it. I still hate it, but I’m here to tell my story. Feel free to laugh with me, cry with me and ask me questions as I go about mom-ing from the sick bed.