One day my brain decided enough was enough. For years and years and years I had hidden my problems from myself and the rest of the world. I didn’t really know what the problem was. I guess I just thought it was normal the way I lived, the constant worry, my head always spinning out of control. Never believing in myself, constantly trying to be more, to do more, to be the hostess with the mostest in everything I did.
There was a catch though. At some point in my life I had developed a self-destruct button I would push whenever things felt like they were going too well for me.
I had convinced myself a very, very long time ago I didn’t deserve all the goodness in life. I had a very boringly normal kind of charmed childhood right up to high school. School was school for me, but my finger was always hovering just above the self-destruct button. Whether it was to do with my grades or friends (it didn’t really matter what it was) self-destruction was never far away.
I developed a coping mechanism that if I made things, bought things, gave people things then they would stay around. It seems really silly to write it down and say it aloud. But it is how it was for me. This is how it has been all my life. Make a gift, buy a gift, make a cake, do something for someone, leave a gift — and around in circles it goes. In between all of this there have been times of drinking — lots and lots of drinking — trying to be the life of the party so that people want me around and won’t not invite me along, though in the back of my mind I was (still am) pretty certain I am the pity friend.
This has really been the cycle of my life. I don’t understand it. It makes no sense at all really, over and over I am told I am loved, needed, wanted — but time and again I self-destruct. Until my mind finally decided it was time for the big disconnect. The biggest of them all.
My brain disconnected from my body.
The left side of my body stopped listening to what my brain would tell it to do. Which meant my arm wouldn’t hold a cup or open a bottle or even lift up when I told it. It also meant my leg wouldn’t walk when I wanted to, I couldn’t walk for a long time without the aid of a stick. There were so many things. Every now and then I still get pins and needles for absolutely no reason, and occasionally I limp when I’m tired.
This brain and body disconnect is called functional neurological disorder (FND). It is actually a lot more common than people know. Functional neurological disorder has been known as lots of different things over the years: Freud referred to it as hysteria, after WWI it was known as shellshock, often times doctors will consider hypochondria or will tell a patient the symptoms are simply psychosomatic. It has also fallen into the somatoform disorders. Currently it sits in the DSM-V as a conversion disorder.
Its cause is unknown and the symptoms are vast including and not limited to shaking, blindness, muscle weakness, hemiplegia, inability to speak, multiple sclerosis-like symptoms and so many more. This makes it more complicated because often doctors, nurses and other professionals just don’t know why things aren’t all working together. Lots and lots of tests are run, and they will all come back within normal limit, which only makes it more confusing for me the patient (or someone else). No one knows what is wrong, so you’re put in the “too hard basket” or the “making it up basket.” You can get sent from doctor to doctor, psychologists, psychiatrists and neurologists telling you things will get better in time if you can just work out that trigger. Then there are others with FND who are certain their brain and body disconnect is in no way psychological and was triggered by a physical event such as an operation or virus.
Basically, if we think of the brain as the hardware of a computer and the nervous system as the software, then the issue is how the software is interacting with the hardware. The key is to get the two working together again. This can take a long time to work through, and if there were no psychological issues prior to the FND diagnosis, then they might develop after a long period of not knowing what is wrong and trying to convince everyone what is happening is real.
I can look back over my life and can absolutely connect the dots. I am in no doubt that my FND is related to my depression, anxiety, PTSD, dissociation and depersonalization. That said, it still doesn’t always make sense. It is a long way back from a brain and body disconnect. It doesn’t happen overnight and it doesn’t happen without a lot of hard work, physically and mentally. There was a time not all that long ago walking around the block would have been a near impossibility. Now I can go off on a walk by myself without a walking stick! Physically I have improved out of sight, so I am told. The memory issues mean I actually don’t know how far I’ve come! Mentally there is enough to keep a team of psychiatrists busy for years!
Sometimes it’s hard to not get angry and think why me. I guess the reality is why not me? Why am I so goddam special I should get to avoid mental illness and associated problems. I am blessed with an amazing loving family, there were however, plenty of other things going on in my life, Many little, some bigger. Add them all up they create a perfect storm of exactly why me.
For more information on Functional Neurological Disorder visit FND Hope.