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I just passed a birthday. It was my 59th, to be exact. I did not celebrate it because I was too busy mourning the thorn in my side. I am writing this because now I see how wrong I was to feel that way.

The thorn I am referring to is Temporal Lobe Epilepsy. But you knew that since you are reading a blog dedicated to TLE. I was spending the day mourning all the things that I would no longer experience because of the condition, instead of celebrating being alive.

I mourned no longer being able to walk into any restaurant, order a latte and a piece of chocolate cake, and sit quietly enjoying the experience. If the gluten, soy and dairy didn’t get me (I now have celiac disease secondary to the epilepsy), the always-present fluorescent lights would begin to create a painful hum in my nerves that makes me feel like my bone marrow is melting. And that always leads to a seizure. Fluorescent lighting is called a trigger.

I would never be able to leave the house wearing an evening dress, feeling excited and looking forward to listening to live music and having a cocktail or two. Live music is another trigger that can cause simple seizures that result in bazaar hallucinations, head pain and nausea.

I won’t even talk about the lights, or the cocktails, and crowds, which are also triggers. Oysters and straight vodka, once a favorite Sunday brunch, are right out.

At this point, it is unlikely I will ever hold another job, especially one in management. Or get into a car to drive to the job. Or to host a Christmas party, or even attend one for more than a few minutes.

The list goes on.

So I felt sorry for myself with all the things that I will never experience again. But why do I feel that way now? Well, it’s because the yoga, the strict diet, the enforced quiet, the constant monitoring and the small things I work through each day to get one more hour of health or one more night of uninterrupted sleep, are working. They provide enough benefit that I no longer focus entirely on my pain and the difficulties of daily living. I am starting to wake up.

This is what I should have been celebrating. Waking up.

Waking up to a family who has not only been through all this with me, but is still here, full of love and support.

Waking up to a husband who still sees me as an intelligent person worth spending time with each day.

Waking up to creativity, finally.

I realize now that I did not lose anything of true value. And in thinking about all of this, I cannot help think about St. Paul and the thorn in his side.

Paul writes openly in 2 Corinthians and Galatians of an illness, or as he puts it, a thorn. He writes about how he asks God to take away this ailment that was a trial to himself and to others. But the early Christian community accepted him despite his physical condition. He came to understand that the “thorn” played an important role in his ministry, serving to keep him honest and balanced.

Many people believe that temporal lobe epilepsy was his thorn. They point to the physical descriptions of his conversion and his visions, along with his pain and suffering. Maybe it was and maybe it wasn’t.

It doesn’t matter because I get the point. Epilepsy is also my thorn, but the important thing is how I survive with it rather than give in to it.

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