Thursday, August 27, 2009

Making Lemonade from Lemons, a Look at Epilepsy

I would not be a very good author if I didn't face a few of my own fears and slay some of my own dragons. Today is going to be one of my most difficult blogs to write, but it is one that I feel needs to be written. You see, the day before I turned 30 I was diagnosed with epilepsy.

A few weeks before, my son had an emergency appendectomy, it was very scary for me and the hospital was a very crazy place to be when I was so stressed. We hadn't gotten any sleep and dealing with other family's stress (Thomas had shared a room with a split family) as well ,made it even worse. Tom and I had decided to divide and conquer, he had the younger two kids while I stayed at the hospital with our oldest. Isabella was still nursing at the time, so that added stress as well.

The day we left the hospital changed our lives forever. As we headed home, I started to feel a little funny, but didn't think too much of it. I was talking on the phone with my Mom and feeling a bit disoriented, but assumed it was due to our crazy hospital stay. Looking back on it, Tom said I had started to say off the wall stuff, like saying I loved things that he knew I didn't. Of all places, we were going through a KFC drive through when I had a Grand Mahl seizure (yes, I was still on the phone with my poor Mom, so she could hear it all). Obviously, Tom had no idea what was going on and just started screaming for someone to call 911. The actions of perfect strangers that day brings tears to my eyes even as I write this 9 years later. One of the wonderful people even drove our car back to the hospital so that Tom could stay with me.

I was told that I immediately needed to start seizure meds, something which Tom and I were adamantly against. It wasn't until my third opinion, that we finally found a doctor that agreed to not put me on medication. Along with the grand mahl that I had just had, with his background info, etc., it was determined that I had had a few petit mahl seizures throughout my life, which meant that I had a predisposition for seizures. That is what epilepsy is.

I couldn't drive for six months, which was really difficult having kids and living seven miles from the nearest highway. My friends and neighbors were wonderful and helped me with the mid-day pre school pick up and taking me to the store. When I was able to return to driving, it was one of the scariest days of my life. What if it happened again and I killed someone? The thought was terrifying to me, I didn't like to have the kids in the car, to say the least.

It was about a year later when I suffered my second grand mahl seizure, and then eleven hours later, a third. For a second time I was rushed to the hospital, this time they started me on meds before I was even back to myself. Having not really recovered in between the two seizures, meant that my brain had been malfunctioning the whole eleven hours, and this was very serious. There was no getting out of the brain changing meds anymore.

Along with not driving again for six months, I was told that if I didn't stay on the medication, I would not be eligible for a driver's license. The medication and the recovery from these two seizures changed the way my brain functions. I am now very uncomfortable with crowds, they cause too many "vibes" that my brain can't handle. I have what I call bad brain days, where I just can't seem to get it together, this is very hard on my family. But, I think the hardest thing for me, was accepting the fact that I had this life changing disorder.

This is the part where the keyboard goes quiet, I have a rather difficult time talking about it-just ask poor Tom! On my bad days I tend to be cranky because I really don't want to feel that way, let alone have the time for it. Those are the days that I get all of my physical work done, it seems to be great therapy, and I don't mean to sound like too much of a hippie, but working outside tends to "ground" my brain; no kidding.

We have adjusted in other ways as well. Some minor, like using my crock pot a lot when I know I might not be too together by evening. Some major, like not driving when I don't feel"right", and being careful where we travel. This all sounds so serious, but it really isn't anymore, we have changed with the times. I am careful and aware, but I no longer have the panic.

Epilepsy can affect people in all different sorts of ways. Some peoples' seizures are simply the brain having a hiccup, and it appears as if the person has just "checked out" for a few minutes, or as we all know, it could be much worse than I have; uncontrollable with medicine. For me, it was the stigma of having any disorder, especially with it being one that made others so uncomfortable. Knowing that people looked at me differently really bothered me. It felt to me like a very large weakness.

No, this is not a boo-hoo story. I am writing this as a form of encouragement and sharing. You see, we took this as gumption to really get our ranch based businesses up and running as we knew I was no longer capable of working in the "real world". My "seizure disorder" (which is what I call it, makes me feel better-ha!) has brought wonderful friends even closer and showed me the strengths within all of them. I know for sure it has made my family much closer and more understanding of other peoples' "baggage". We all feel absolutely blessed that our situation is not much worse, as we know it could be.

Now I need to work on not being so hard on myself. On the days that I am clear, I tend to work myself into the ground, trying to prove that I don't have any weaknesses. I'm sure this does not help me in the long run, probably even a little destructive. My point being, that we all have things to deal with, it's how you deal with them that really counts.


Tiffany said...

Thanks for sharing that Judy! I've seen you on a bad brain day, and seriously hon, you're still worth a dozen of me. (-:

Joe Holbrook said...

Who knows why we have certain challenges in life. Some people fail from them some become stronger. Some like you share that strength with others Good job kiddo. If I look at you funny it is not your illness but your sense of humor and I look at you funny because you just put a smile on my face. :)

Jim and Pat Shepherd said...

Well, I have tired to pick up the phone and call, but I don't think I would be very good at the conversation, as my emotions have not setteled down yet.

We are so proud of you and how you have handled the "lemons". We are also very proud of the way you conduct your life and how you and Tom raise your family!

So many folks hide this kind of problem. I hope others read your story so that they will benefit from your courage and attitude.

Love, Dad!!!

Anonymous said...


Lisa Kassel said...

Judy, You face new challenges with more courage than I will ever have. You are dedicated to your work and your beliefs. You do all of this with a smile. I would say you've done a great job making your lemonade. Love, Lisa

VickieB said...

Thank you for posting about such a misunderstood illness, that took a lot of courage and it sounds like you handling it well, with the help of family and friends.

My youngest aunt has had epilepsy ever since I can remember and my son's fiance has uncontrollable epilepsy.