We should celebrate every year that we made it through and every year that we're happier and healthier. ― Ellen DeGeneres

     Today I was writing the date down and talking things out with my RNS group and I realized "OH MY GOD! It's been a year. A YEAR!" I have been a cyborg, officially been a cyborg, for a year. Happy Neuropace day to me!!! 

    What a crazy crazy year this has been. 

    Recap: I woke up in March 2020 in the hospital and it felt like I had awoken to an apocalypse... They kept me for 10 days and then after all of that, after the tests said I was a candidate for the RNS, I was ready to get this device, insurance and the hospital and I don't even know who- fought with my doctor because they weren't doing "elective" procedures due to COVID. I cried- a lot- when I heard that. But he fought hard and he won. And on August 11, 2020, I went in for the surgery that has been slowly changing the way my brain is behaving.  

    I am still having seizures. They are not as frequent, they are not as long, and they are not as noticeable. It's amazing how much this device has changed my life. I was able to go walk around DC and enjoy the monuments and the heat didn't cause me to have a seizure like it would have just last year. Hell, just walking around would have caused one last year. I am able to go DO things. 

    I can wear my reading glasses without the sensitive spots on my head hurting, the surgical spots have healed. I have hair- it's grown back and I feel like me again. It's so weird to realize that it's been a year. 

                                                            Before I went in:

When I came home: 

(Thank you for the shirt, Kirstie)

Now:

(See??? I have hair!!!)

 I can't wait to see how much my brain continues to improve. And I can't wait to get rid of one of/some of/all of my meds. We are slowly starting to see what is causing the seizures, the triggers are starting to reveal themselves and slowly we will be able to take care of those. It's been an interesting journey. And it's not even close to being over. 

I feel my brains, like a pear, to see if it's ripe; it will be exquisite by September.

     It's been a long time. And that quote speaks to me... Not the way Virginia Woolf intended it, I'm sure, but oh my goodness, does it speak to me in a literal way. You're supposed to give yourself a year to heal from brain surgeries- which puts me at August. So by September, I should finally feel healed. 

    The scar is healed from the surgery. My hair has grown back. I still have pain in some of the areas from the March surgery, but I'm told that's ok. And I have weird pressure in areas from the August surgery so maybe by September, I'll feel better?

    I have had a lot of people asking me questions about the Neuropace and my "cyborg brain". Since the last time I updated I was talking about my neurosurgeon arguing with somebody about it not being an elective surgery. They aren't scheduling elective surgeries during COVID. We were worried that I wasn't going to get it after all- after all of tests and everything that we had done to get it, they were trying to tell us no.  It was approved though, and I had the surgery in August. 

    I think a lot of people expected it to stop the seizures right away. (Which would be amazing!) But it's not quite that simple. Which seems to be what the questions are about. The device is basically learning the way the brain works, and learning the ways my seizures happen, and as it learns these things, it learns how to stop them. We are trying to find my trigger(s). So far, we can't seem to figure anything out. Each time I go to the doctor, they make adjustments to the device as necessary, and eventually, we will (hopefully) be able to say this thing is stopping my seizures before they start. And maybe I will get the reduce my medications as well.

    I went through January without any real seizure activity, and then February my brain decided to throw a party again, and now here I am. I am still having seizures. Just this morning, I had a typical spill coffee on my lap kind of seizure. BUT the "seizure hangovers" are no longer there. Before the Neuropace, I would have to sleep off the headaches caused by seizures and rest for the whole day if not for the day after as well. And now I have a seizure and can just go on with my day. So, yes, I am having seizures, but there is already some kind of improvement in my day to day life and that is wonderful.