In the autumn of 2012, I suddenly started to stutter. I spoke with a lisp when I was a child, so at the time my main concern was that I might be developing a new speech impediment.
Then about a month later, I began having problems with my left hand. At the time, I was an undergraduate student at Davidson College in North Carolina. I was in my dining hall, reaching for a cup of green beans, when I could not close my left hand to grab the cup.
When I finally managed to force my hand to close around the cup, the hand started shaking uncontrollably, making me drop the container.
From that point onward, I really lost control over my left hand. Whenever something touched my hand, it would stiffen and twitch. Putting on a t-shirt, pants, and shoes would take 40 minutes, because my hand would shake whenever I tried to grab and hold fabric.
I went to health services, which ran some tests, but was unable to diagnose the problem.
When I was home in Atlanta over Thanksgiving break, I went to see a neurologist who ran basic physical tests and performed an EEG. During the appointment, she said that I did not have epilepsy, but she would review the results and call later with a definite answer.
A few days later, I was home alone at my parents’ house, eating trail mix at the kitchen counter. I did not know it at the time, but one of my seizure triggers is using my mouth too much – for eating, talking or even for smiling.
While chewing the trail mix, I started feeling discomfort and muscle pain in my mouth. When I kept eating and tried to push through that discomfort, I ended up triggering my first tonic-clonic seizure.
I remember feeling sharp pain – both on the left side of my face and radiating from my hand up the left side of my body. Thinking that I was having a stroke, I picked up the phone and dialed 911.
I don’t remember what happened next, but I woke up on the kitchen floor with no clue what was going on.
Ironically, less than an hour after this seizure, the neurologist called to tell my parents that the EEG had confirmed her initial diagnosis that I did not have epilepsy. My mom replied that I had literally just experienced a severe seizure that caused me to collapse on the ground. Then she hung up on her.
Even after that, it took me a while to get a proper diagnosis. When I went back to college for the spring semester, I started having more and more seizures, but none of them were in public. They always happened either in my dorm or in the restroom.
One time I had a seizure in the restroom while a custodian was cleaning the facilities. She called an ambulance, which took me to the hospital. Eventually, a neurologist did the usual EEG and sleep tests and diagnosed me with epilepsy. He put me on medication, but it didn’t work. He increased the dose, but that didn’t work either. Even though my epilepsy was drug resistant, I stayed in school for the spring semester.
Over the summer, I started going to the Mayo Clinic in Jacksonville, Florida to see an epilepsy specialist. By autumn 2013, we found a medication combination that greatly decreased the number of tonic-clonic and partial seizures I was having, but the heavy doses of medicine came with serious side effects. Basically, the medicines knocked me out. I felt drowsy and sleepy all the time.
It was frustrating to know that I couldn’t take the classes I wanted to take. I had to take the ones that worked with my medication schedule.
For example, as an art major, I was interested in photography and video. But I had to take a sculpting class, because it was the only one that was taught during a time when I was knew I could function properly.
You need two hands to sculpt. It’s a bad idea to take a sculpting class if you only have one functional hand. I barely passed.
My doctors told me that the high doses of medication I was taking were not sustainable long-term, so I took a break from college in early 2014 to prepare for resection surgery. As preparation for that surgery, the doctors removed part of my skull and inserted electrodes to figure out exactly where my seizures were originating on my right temporal lobe. When they collected all the information they needed, they wheeled me into the operating room – but at some point during the procedure, while I was under anesthesia, the surgeon changed his mind and decided not to operate. The seizure activity was located so close to my speech center that the surgeon was worried the resection might leave me mute.
When I woke up from the anesthesia, I was grateful that they had decided not to proceed. I was already having difficulty speaking, and I’m such a naturally extroverted person that not being able to speak at all would have been terrible.
After that, I took more time off from school to figure out a new treatment plan while my doctors continued to adjust my medication. Unfortunately, the new medication regimen produced severe mood-changing side effects, making me angry, depressed, and irritable.
Eventually, my doctors modified my prescriptions again until I was well enough to return to school for the spring semester of 2015. The medications prevented any further tonic-clonic seizures, but my partials were still very bad.
In late 2015, my neurologist suggested that I consider getting the RNS System. I was reluctant to try anything new until I graduated from Davidson and completed a one-year post-baccalaureate art program at Oglethorpe University in Atlanta.
While I was in the post-bac program, I started seriously researching the RNS System. I read all the information on the website, the patient stories, the printed handouts and flyers, social media.
I remember Richard Lopez’s story about working at his computer and not noticing when the RNS System stopped his seizure. For me, reading that story was magical. I thought to myself, “I need that! It would be such a relief to be able to live like a normal person – not forgetting that you have epilepsy, but not having it hovering over you either.”
After doing all this research, I reviewed the material with my parents. Knowing that they approved of my decision made me more comfortable with the concept of getting the RNS System.
In October of 2017, I made the decision to get the RNS System. That December, I stayed at the Mayo Clinic for a few days for studies and lab work. I then returned there a couple of times over the next few months for required counseling sessions before finally having the surgery on April 3, 2018.
I experienced minimal pain after the surgery to place the RNS System. I took Aleve for a few days, but that was it. That was nothing compared to the resection surgery, which had left me severely uncomfortable for weeks.
With the RNS System surgery, I stayed overnight in the hospital and was discharged the next day. A week later, I returned for my first checkup and my doctor turned on my device. A few weeks later, I returned for another checkup. He told me that in the interval, I had a seizure. I didn’t believe him because I hadn’t felt one. He showed me the charts. Sure enough, the data collected by the RNS device indicated that I did indeed have seizure. That was the first time I was excited to have a seizure!
The fact that I had not felt the seizure meant the device was working as intended.
The RNS System has dramatically improved my quality of life. Since I got the RNS System, my focal seizures have become both less severe and much less frequent. Before the surgery I had partial seizures all the time. For example, in a 20-minute conversation, I might have had 30 seizures. Now I can talk with someone for more than an hour without having a single seizure.
In the months after I received the RNS System, I gradually recovered use of my left hand. That’s such an incredible improvement. I did not realize what a necessary role two hands play in our lives until I could only use one of them.
I can get dressed more quickly and easily now. On really awesome days, I can even tie my shoes. I have the dexterity to put in stud earrings without assistance, put on bandages, or connect the clasps in necklaces. I can even wear watches and bracelets on my left wrist, which would definitely have triggered ongoing seizures before I got the RNS System.
Before I had the RNS System, I had to skip business dinners and formal events because I could not speak and eat the table without experiencing multiple seizures. Now, I can usually eat whatever I want while participating in discussions over meals with family, friends, or professors.
In the summer of 2018, my doctors proposed starting to reduce my medication. I took some convincing! Lowering my medication dosages was always a goal of mine, but it was scary to actually start on that path. For years, I was accustomed to increasing medicine levels to decrease seizure activity, so it seemed illogical to go in the other direction.
Still, after a few conversations with my doctors, I took a deep breath, decided to trust the RNS device and my doctors, and began reducing my medications. I was taking 16 pills per day when slowly started lowering my pill intake by half a pill every 5 weeks. I’m down to 12 pills per day now and I have not noticed any increase in seizure activity.
Taking less medication not only saves me money, it also reduces the associated side effects. I feel that I can think clearly and remember more. I’m much less drowsy. I’m in graduate school now at Maryland Institute College of Art (MICA) to obtain a Master of Fine Arts. It’s a huge relief to finally be able to take the classes that I want without having to schedule everything around my medications.
I have incorporated some of my feelings about the RNS System into my artwork. One called “Transcriptions” deals with patient-doctor trust, how the brain not only processes thoughts, but holds memories that make up your identity, and how you trust surgeons with who you are as a person.
Another piece of art called “Battery-Powered Brain” is based on manipulated photos, projections, and holographs of the agenda planners I kept for over a decade. I made this work as a metaphor for all the mental transformations and labor I had to do to get to the point where I was OK with having the RNS surgery.
These are both silent video works, and people have told me they feel like the silence makes the art more intimate. Most people don’t talk to strangers in detail about their surgeries, so people who have seen these pieces said it makes them feel special, like they are being let in on a secret.
For me, the RNS System has given me back my independence.
Before, I had to give up my driver’s license and synchronize my daily schedule with a close friend or family member. My caregivers and doctors worried about me being alone, even for just a trip to the grocery store, much less traveling to other cities or states.
Now I have my own apartment hundreds of miles away from my parents. I can socialize with friends at meals or go with them to cocktail parties without worrying as much about seizures.
One other huge benefit of the RNS System has been that it has allowed me to play soccer again. I’ve played since I was 8 years old. I always loved the physicality and camaraderie. In college, I played at the Division 1 level. When I found out I had epilepsy, it was hard because I had to stop playing and practicing. Naturally, your coaches and your teammates don’t want you to have a seizure on the field.
In my family, we have a fun tradition that girl cousins pass on their soccer skills to the next generation. Before I got the RNS System, I was not able to continue that tradition. But now I’m happy that I can teach my younger cousins how to play.
I do think that having the past experience of being a competitive soccer player helped me cope with epilepsy and the surgeries. To play at the Division 1 level, you need to work hard, endure physical challenges and resist mental shutdowns to achieve long-term benefits. That outlook helped me get through the surgeries, the pain and the medications. I was less afraid of both surgeries, because I was able to make myself focus more on the outcomes.
The most significant benefit of having the RNS System is the fact that I’m no longer a burden to anyone else. My friends and family don’t have to worry about me as much. My loved ones have more peace.
Published on: January 28, 2020
This represents the experience of individual(s) who have used the RNS System. Individual results will vary.