Thursday, February 18, 2021

Diagnostic Relief!

Somehow, understanding the nature of my condition mitigates living with it. And getting an official diagnosis of non-epileptic seizures has greatly eased my soul. 

“Normal” people instigate all their actions; their autonomic nervous system rarely instigates action. Autonomic responses are limited to a startle response when something unexpected happens or when they feel threatened which is infrequent in most lives today. I, on the other hand, live a life controlled by my autonomic system. 

I get it now. My breathing, my limbs, my heartrate and temperature are operating without any regulation from my frontal lobes, the most important and newest part of the brain. Instead, these functions have been coopted by my parasympathetic nervous system and its information highway, the vagus nerve. Somehow, understanding lessens the burden of living this way.

And—miracle of miracles—I’m now connected to a community of health professionals who are dedicated to helping people with what they call non-epileptic attacks (NEAs); I’m full of that wonderful “I am not alone” feeling. I feel so, so incredibly much better having access their website and their partner resource websites.

Oh my God: Information can be as effective as medication. I feel almost euphoric thanks to all the learning I’m doing on the websites to which Dr. Shoja directed me. And getting an official diagnosis of NEAs has helped me incredibly.

One amazing thing is that one website actually provides text for a letter for me to carry. I’ve long wanted one to keep people from calling 911 when I have a seizure in public. I asked doctors to give me one, but they couldn’t in case I needed professional assistance one time. But now I have an excellent model letter to carry. Oh my God, I’m so much happier.

All the information and the letter have infused me with confidence. I’m feeling far, far less afraid of engaging with the world. The sites I’ve visited even have resources for friends and family of people with NEAs that inform and advise. It’s so, so great.

Maybe it’s the nature of the business—showbusiness. Maybe it’s the setting—Paris. Whatever it is, I’ve enjoyed watching Call My Agent on Netflix. It’s a sitcom; the kind of show I detest except when it’s a rare gem such as Ted Lasso. It often makes me chuckle and its thorough Frenchness gives me a nice rush.

Yesterday I was back to work, chopping, stacking and clearing space in two sheds for incoming wood. I’m now ready for delivery but dreading doing the schlepping and stacking in cloudy or rainy weather. My friend Beth asks why I don’t hire someone to help me; it’s a logical question. I think that in spite of my complaining, I actually feel good about doing the work. I take pride in accomplishing it and I think it is good exercise for my tired old body. Plus, I don’t have a deadline, really. I can work taking lots of breaks.

Today I rest. I’m ready for the wood to arrive and can just chill and read by the fire today. It’s cloudy and it’ll probably rain later. I hope it does and that rain washes the remaining snow away.

Rush Limbaugh is dead. Hurray! 

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