Letter Five: december 2022

Dear Friends and Family,

It’s been a long time since I’ve updated you on my progress and a lot has happened so I wanted to write you now, at the close of the year, to let you know about the incredible changes that have taken place in my health and my life in general.

Just as a reminder (for both you and me :)), when I began the process of qualifying for the RNS implant I had been unable to work for months because my life was constantly being disrupted by increasingly volatile seizures, both in frequency and intensity. My husband and I were living in a constant state of fearful anticipation; not only of the next seizure but also of what I might be doing at the time because that would dictate whether I could get seriously injured. What followed involved being prescribed higher doses of my current medication as well as the addition of another new medication.

However, as of today it has been over a year since I’ve had a Tonic Clonic (Grand Mal), and about 8 months since the last of the “small” seizures (absence or partial complex). Once the device was dialed up to a therapeutic level and my seizure activity abated, I have been slowly and carefully reducing the primary seizure medication I have taken for the last 10 years from 450 mg a day to nothing. In fact when I went in to MGH for my last appointment earlier this month they showed me on my EEG (as it is continuously recorded by the device), the most recent activity and at that time it was clear that the device had detected it and responded quickly by treating and course correcting the neural pathways so that the activity didn’t escalate into a full blown seizure. 

AH.MA.ZING. Science. . . amiright?

I have been on high doses of any one of a number of combinations of seizure medications since I was 20 years old and although at various times they controlled some, they have never fully controlled all of my seizures. The truth is that part of the tragedy of this particular illness is that the side effects of the treatment (constant exhaustion, blunting of my cognitive functioning, nausea, weight gain, etc.)., shaped my life beginning at a formative stage. I was supposed to be using the RISD degree I had worked so hard to earn, to start at my first design job in New York City. Not losing my drivers license, moving back home to Vermont, spending my time in and out of hospitals getting tested frequently, and taking a variety of anti-seizure medications. All of my actions have required careful calculations of energy output, possible stimuli, and safety considerations, so to not only be free from seizures today but also of one of my primary medications. . . well, that’s just nothing short of life changing. 

I have long had a vision of what my work could be and what I wanted to be able to do with it, but it wasn’t until this past year’s incredible success with the Neuropace implant stabilizing my health and allowing me to reduce the medications I take, that I have been able to begin to implement my vision. If you haven’t already, check out my new website and you’ll see some of that change. 

Thank you for witnessing and supporting me throughout this process, I can’t wait to see where we go from here!

Wishing you all a healthy and Happy New Year 🎉

Love,

Emily

“Every new beginning comes from some other beginning’s end.” 

-Seneca