Letter Four: december 2021

Hi All,

It’s been a while since I checked in and firstly I wanted to wish you all Happy Holidays! I hope you’re all healthy and well and getting a chance to enjoy the holiday season. I know I’m certainly grateful to have been able to spend a nice, quiet, and low-key Thanksgiving with mine. 

Second, I wanted to just respond to your very much appreciated requests for an update on what’s going on with my health. This process continues to evolve and since you know how I don’t like to write before there’s progress to report, I have been waiting until there’s enough to share (and I’ve had the energy to share it.)

I hope I do a decent job of explaining but I apologize if I miss something or it comes out a bit jumbled! Also, sorry this is a bit long, I tried to keep it as concise yet still as comprehensive as possible. It’s actually the short version, if you can believe that.

I think my last email was around August, so to catch up; August through October the Grand Mal’s (I’ll just refer to them as GM’s) spiked, and after assessing the situation I realized it was very likely a result of a miscommunication around my medication dosages. One of my neurologists advised me to alternate between taking a higher and lower dose of a seizure medication according to how I felt on a given day, and it seems that that might have contributed to the increase. Since there’s no predictable warning precipitating a GM, I felt like I couldn’t trust my own body and Chris was constantly “on”. 

Luckily I had most of the GM’s at home when Chris was around, although I did have one when I was walking downtown and happened to be talking to my Mom on the phone, ironically discussing my worries about having seizures. She was in the awful position of being able to hear me having one but completely unable to do anything. Fortunately for me, there were a few people further down the block I was standing on and one of them had some medical training. They came to my aid, called 911, and I was taken to the ER. Unfortunately the ER was overcrowded due to COVID, with people on cots lining the hallways, and I now have a $3,000 bill to hopefully get my health insurance to pay for, but all was essentially fine.  

In an effort to try to get ahead of situations that you (all of us), generally don’t have to think twice about, we tried to strategize. What if I have a seizure while I’m walking down the stairs in my house and no one is home? Or what about if I have one while I’m cooking, or while walking across the street? So we came up with a system; while Chris is at work I generally stay on the top floor, avoiding the stairs and possible serious injury. I also don’t cook anything while I’m alone because that could also be pretty hazardous. Under (more) normal circumstances I would perceive these situations as low risk, but for the moment they are potentially situations that could easily result in secondary, catastrophic injuries.

As you can probably imagine, all of this has been exhausting. Not just for me, but Chris, my mom, my brother, etc. I mean lets be honest, you’re probably exhausted just reading this! It’s unbelievably draining to keep on going without a tangible result and with no end in sight. However, the few people I’ve been able to connect with who have had this procedure before all say virtually the same thing; be patient, it’s a marathon not a sprint, but it’s the best thing they’ve ever done for themselves and it’s changed their lives. So, I can’t argue with that.

The answer to the frequently asked question of when do they (my doctors) think it will start getting better is maddeningly vague. Essentially, time will tell. I asked that question several months ago of the doctor that oversees my device, and he said “about 6 months to a year.” When I turned to my Nurse for clarification on the doctor’s answer, her response was “It’s a process. Unfortunately you have to have seizures for us to program the device to respond to that specific electrical activity and not some other brain activity. I’m so sorry, I wish there was a different way to do it.”

 However, the good news is that at my last appointment my Neuro said that they have caught all of those GM’s I was having on the EEG and they are clearly defined, which means that they can start to program the device to interrupt the neural pathways. Retraining my brain. Essentially putting up a detour sign and redirecting traffic.

So, going forward the deal is that every three months we’ll go into Boston and Chris and I will meet with a team that consists of the Neuro in charge of the device, the Neuropace Technician (the company that makes the device), and a couple of nurses or other interns. Not quite sure what those last few are doing there but I have a good hunch it’s because I’m a fascinating case and am providing excellent opportunities and teachable moments. If I were to reframe that I would say that I'm just super special and everyone wants to know me (yipeeee!).  

So at that point they’ll turn up the dial another notch. They do this verrrrry slowly, a small increment every three months, because they found out previously on some other hapless Epileptic that if they turn it up too fast, that can cause seizures too. 

Basically, moral of the story is that everything that can control seizures can also cause them. Seriously. I’m not even kidding.

Also, for the time being I’m staying on the higher dose of meds to minimize potential danger as the device starts to work. Even though they make me feel fuzzy, and now I walk from one room to another to get something and literally forget what I went in there for two seconds later, have trouble with word retrieval in conversations, and it’s been challenging to concentrate, I‘ll do it for now. It is getting a bit better and I’m starting to slowly be able to get back to work. Not to toot my own horn or anything, but I still get up in the morning and get ready for another day. I know there’s no prize or medal for that but I think there should be.

So I hope you enjoy the holidays, and I was about to write something like “in these uncertain times” but you know what? Times are always uncertain, it’s just that a lot of us have had the privilege of not being as aware of that fact until more recently. So instead, I hope you find joy in your life right now. 💜

Love to You All and Happy Holidays!

Emily