I began writing my last post about Epilepsy because I felt good expressing my experience and feelings via this medium. My first draft was a novel, but I felt relieved because everything was out on the screen. As I edited the text and made it more concise, my thoughts and memories became more clear. I’m happy I found this outlet.
When I shared that post on Facebook, I saw the outpouring of support and was humbled. From the bottom of my heart, thank you to everyone who read that post. It means the world to me, more than I can describe in text. Still, I’ve been conflicted about continuing to write. I usually tend to isolate my feelings, so sharing like this makes me uncomfortable.
Anyway, I’m going for it. The following text describes what happened in the weeks after I returned from Chicago, back to the “real world” that I had waiting in San Francisco.
Coming back to SF
When I returned, most of the primal feelings of fear toward seizure activity were gone. I had a list of rules that would keep me healthy if I followed them:
- Avoid anxiety. It is the biggest trigger for my seizure activity. This is by far the most important rule
- Do not drink alcohol, it has bad interactions with the anti-seizure medication I’m taking
- Avoid sleep deprivation and keep a regular sleep schedule
- Take medicine on a regular schedule (9am and 9pm)
- Keep blood sugar stable, insulin spikes can lead to seizure activity
- Stay hydrated, dehydration can cause seizures
- Always carry my rescue drug with me
I realized quickly that these would only keep me from having seizures. They did nothing to bring me back to life emotionally and socially. And I was in a bad state in those departments. I thought to myself many times that my life was gone. The feelings were similar to other losses in my life, so maybe this was a grieving process of sorts. And I was ashamed that I wasn’t strong enough to avoid these feelings and find a way to make my life work.
I often wondered if I was suicidal, but concluded that I wasn’t because I didn’t want to harm myself. I felt like the harm was already done. I was anxious about my future, depressed, resentful, isolated, angry, and so on.
I hid these feelings from almost everyone, which made things worse for me for so many reasons. I did such a good job in fact that most of my friends and some of my family had no idea anything major was going on until they read my previous post. I talked with my parents regularly, then started talking with my sister. They all provided support which eventually helped me open up.
At some point, I was able to open up to my psychologist and begin doing constructive work with her. My coworkers and friends helped too, probably without even knowing. If any of you are reading, thank you for all that you’ve done and are still doing. Seriously, thank you.
Every time I opened up a little more, I knew I made a little more progress. I got to a place where I was focusing on keeping healthy and living sustainably.
I joined a few running groups and began to run longer distances. I enjoyed soccer games more and began to play with a new passion that I don’t think I ever had before. I could go to work without burning myself out, be in social situations and not wonder what others think of my epilepsy, and even speak about my feelings openly. Big steps for me.
And, most importantly to me, I was getting good at identifying when I was stressed. I found that once I identified the anxiety was there, I didn’t have to do much more to eliminate it. I’m going to write more sometime on that whole process.
Months passed and overall I was doing well and slowly making progress. Then the drugs I was taking began to interfere. After a few days of minor aura activity, I told my doctor that my anxiety was a bit higher lately. At the time I was taking Celexa to help me control anxiety, and she told me to increase the dose, which led to a bad reaction.
The worst part was depression. There’s a scientific explanation to explain what was happening, but I didn’t want to hear it. It was a different feeling than anything else I’ve known. I had a horrible outlook on the world, I had to drag myself out of bed in the morning, out the door to do chores, or into the car to go to work. And my confidence was almost completely eliminated, both in myself and the world.
I felt once again like my life was about to go very badly, like I was at a breaking point.
So, with the help of my doctor and my parents, I began to slowly stop taking the drug. As I did, I experienced a withdrawal. The depression remained and worsened at times, I had some increased anxiety, migraines, and some other side effects. Some remain even now, but they’re quickly receding.
During the worst parts of the withdrawal, I also had an intense feeling of anger at pretty much everything. I felt like I had a terrible deal in life, and at the same time was ashamed of those feelings because I knew that there are people in life that had a much worse situation than me. So throw some self-loathing into the mix too.
At my Dad’s suggestion I went to see a psychiatrist during this withdrawal period to understand details on what’s going on. He seemed experienced with epileptic patients. We talked for a while about what’s going on, how I’m feeling, etc. He even offered to prescribe other drugs to help combat the withdrawal. I am strongly opposed to taking drugs to solve the problems of other drugs, so that sounded like a terrible option.
I was proud that I told him my feelings calmly and rationally. In retrospect, that doesn’t sound like much of an accomplishment to me, but I remember it was a big effort at the time. I felt like he cared what was going on with me, and we came to a reasonable compromise.
After the visit, a switch had been turned. Over the rest of the day the good feelings began to grow. During the days afterward, I started feeling much better very quickly. I had more energy, and that grim filter over everything in my life was gone.
Now I was starting to move in a positive direction rather than just surviving. And I was moving faster than I had since before my first seizure. Maybe even before that.
I quickly realized how strong these good feelings were when I got a bad case of food poisoning a few days later. I remained happy throughout the whole experience, and I even remember feeling good experiencing a “normal” problem like this one. A few days earlier, the experience would have been destroyed me emotionally.
The withdrawal effects of the Celexa wore off as I thought they would, and I knew I was right to refuse further drugs at the psychiatrist visit. My confidence in my own health judgements grew quickly, and it spread to other parts of my life. I think it was always there, but I refused to let it come to the surface.
By the time I returned from the Christmas holiday, the problems that I had with my life seemed mostly normal. I had come a long way to improve my emotional state and now I was focusing on improving my social state. A far cry from 4 months ago, when I was working harder than ever just to stop having seizures.
If it wasn’t before, my newfound confidence was confirmed after I attended an open bar new years party and had a fun time. Two weeks beforehand, I was sure I wouldn’t go, but I did and enjoyed it, and I was proud of myself for that achievement.
And now, 11 days after that party, I’m sharing my second piece on my own epilepsy - something I never imagined doing even a month ago. And I’m extremely proud of that too.
So, I have this foundation on which I’m building a new life. I have a good idea what I’m doing right now and what I want to do in the future to stay physically, emotionally and socially healthy. I’ll continue with details in a next post.