Wednesday, August 11, 2010

Vulnerability...

A couple of weeks ago I came down with strep throat. My ears were aching and I finally gave in and went to the doctor. I walked out with a prescription for Azithromycin. The first night I took it, I was up all night. I did not feel well and had many episodes of tremors and that terrible sense of doom. That is what my aura feels like most of the time... doom. Sometimes it catches me off guard if it has been awhile since I've had an aura or seizure. That night I was just off and not feeling quite right and could not sleep.

I continued to take the medication because I thought I had taken it before for something. The next day I was tired but got through the day. Two days after my sleepless night I woke up in the morning and was trying to get ready for a business trip that I was due to fly out for that morning. My arms were tremoring so bad at times that it was difficult to get ready. And the sense of doom overcame me once again.

I decided to lie down for awhile. My husband came upstairs and found me in bed where he saw me tremor and shake. He has not really seen me have a bad seizure, as most of my seizures are simple partial seizures and many times not noticeable by most people. But these were more active and uncomfortable. He had a worried look on his face and wondered if I was having a stroke or heart attack. He kept saying "our kids need a mother". That in itself freaked me out a little as I've never quite seen him look so worried before. But because I was feeling so awful at that time I did not resist when he wanted to take me to the emergency room.

In the ER I actually got a doctor that was familiar enough with seizures that he even asked me if I had simple partial seizures or if they were more severe, like a grand mal or tonic clonic seizure. I was impressed, as most doctors don't even speak the terminology. I felt at ease immediately and he had different blood work done and checked my heart just to make sure it was not anything more serious.

The next day I stayed home from work and worked from my home office. I was not feeling 100% confident in driving into work or sitting through the day. My co-workers have been wonderful all of these years when I have had seizure issues, but I just was not feeling 100% normal.

I spent two days working from home and the seizures started to subside. When I finally went to work, walking through the parking garage that first evening back, I suddenly realized why I was so bothered by something that I should be used to by now. It's that terrible feeling of "vulnerability" that you have when you experience times when your seizures are more active or you're not feeling 100% in control. I do not like not having control of a situation. Epilepsy at times has taken the control away from me and it's not fair. I sat in my parked car for awhile thinking about things. For the first time in a few years I was feeling sorry for myself.

With two kids and a husband the stakes are high if something happens to me and I can no longer work or can no longer function at the same capacity that I am currently handling. The stress of that weighs on my every day. My seizures for the most part are pretty controlled by medication, but there are times like this when my seizure threshold is lowered and I get a flashback of what my life was like the first 3 to 4 years that I started having seizures. I was married to a man who left me because he did not "sign up for this". "This" being Epilepsy. My second husband has signed up for it knowingly and my kids have had no choice in the matter. But it's still not fair. It's not fair to them or to me, but that is how life has played out for us.

A few days ago I sat in on a family panel made up of other family members of people who have had brain injuries. My husband suffered from a traumatic brain injury at age 17. I was the only spouse on the panel. Everyone else was a parent of a brain injury survivor. My perspective is different. I married someone knowing that they have had a brain injury and my husband married someone knowing that they had Epilepsy. Life is such a hard thing to figure out. I listened to the other families stories and I found it hard to hear the details of the accidents and injuries. It just tugs at me. But that day, sitting on the panel, was a day that was meant to be. It worked out perfectly with what had happened to me the previous week with more active seizures. You can sit and think hard about what has happened to you and let it define you, or you can take what has happenend to you and embrace it and see what you can make of it. It is not the events that define who you are, it truly is what you do with that information or that experience that makes you the person you are.

People have choices every day. I did not choose to have Epilepsy, but because it chose me, I have taken it and done with it what I can. I have those moments of vulnerability that make me realize how precious life really is and how often people take their health for granted. I was one of those people.

3 comments:

Anonymous said...

Very well stated! Life does have a way of throwing us curve balls and it really makes a difference how we handle them. Using our own difficulties to help others does give meaning to our struggles and our lives. Thank you for the wonderful example you set. Laura

Anonymous said...

I just came across this blog, and while reading it, I could feel mye eyes tearing up. I was just diagnosed two weeks ago, and feeling very depressed, emotional, tired and asking myself, why me? Im 40 years of age, everything was going great...staring a business on the side, then suddenly someone tells you that you have epilepsy and they dont know why. I am on medication...keppra...but am feeling upset, anxious, depressed, overly emotional, and everyone around me is now treating me as if I have a mental defect. I just wanted to thank you for posting this blog....I wasnt sure if maybe I was going crazy, or if I was normal for feeling this way. Tanya

Michele said...

Tanya,

If you'd like to talk in person, you can contact me through the Nebraska Epilepsy Foundation office. You can get my email information or phone number by emailing efnebraska@efncil.org. Michele