My Story - Growing Up

Growing up can be tough. Growing up with epilepsy can be more tough. Sometimes it can be really tough. Luckily, there were some things that helped me along the way.

Early on, Dr. Wang told my parents not to treat me any differently than any other child. He told them to let me do whatever the other children do, and not stop me. This was great, because I was still allowed to climb trees, and swim, and ride my bike, and do all the things that "normal" kids get to do. But that doesn't mean that nothing was different for me.

Anyone who has ever asked me to tumble ("do back flips") knows that my parents always taught me to protect my head. This is something that has become habit. I can't do a back tuck because it is beyond unnatural for me to go backwards. I don't know where I'm going, and therefore I can't guarantee that my head is going to be safe. Even attempting the backwards motion is almost impossible for me.

My parents also told me, from an early age, that all of my teachers, coaches and close friends should know about my seizures. That didn't mean that I had to tell everyone, but there were a list of people who should always know. That was to keep me safe. If I had a seizure in class, or at a sports practice, and my teacher or coach didn't know, then they would have no idea how to handle it, and would likely freak out (like many people do when they see a seizure.) If they were informed ahead of time, they could prepare themselves for that scenario. My friends knowing did come in handy a couple times. Those stories will be saved for later.

These days, I pretty much do tell everyone (as evidenced by this blog.) OK, not quite everyone, but there is nobody that I would hide it from. If it comes up in conversation, then it comes up and I don't worry about it. I tell my story like it's an open book, and I answer any questions that people may have.

Many people who I know who have epilepsy went through this phase of being diagnosed. That diagnosis generally cones with a phase of being upset, depressed, embarrassed, and/or other deep feelings. I never went through that because it was always a part of me. It was just a part of life for me, so I can't always fully understand those feelings when people talk about it.

All of my close friends have always known about my seizures, and a few have seen me have seizures. But they also know that my epilepsy is the one thing they could never joke about. People can make fun of me for being a nerd, or being a cheerleader, or playing too many video games, and I accept all of that; I usually just laugh it off. But having seizures is not something that I chose, and it's the one thing that I don't let people joke about, even to this day.

My Story - Early days

Since I started having seizures almost immediately after being born, I also started seeing a neurologist almost immediately as well. My pediatric neurologist was Dr. Wang - which is pronounced like "gong" not like "gang". He had a saying "If you're saying it wang, you're saying it wong."

Dr. Wang put me on medicine to try to control the seizures, and my mom started a seizure journal. A few years ago, we found a small piece of this journal and I digitized it. Here's what I found:

1985

Feb 7 2 Seizures with Apnea

Feb 10 2 Seizures with Apnea 

Feb 20 Off  Dilatin 

Feb 24 2 Seizures @ home

1 Seizure in the ER

Turned Blue

Started Dilatin

Mar 29 Completely off Dilatin

Apr 21 2 minute seizure

Stopped breathing for 10 seconds

Apr 22 4 minute seizure

Back on Dilatin (4cc's 2x's)

1986

Jan 13 2 minute seizure

Eyes rolled back into head

Left arm jerked

Jan 16 3 1/2 minute seizure

Jerking, then stiff, bent arms, eyes rolled back

After it stopped he went to play immediately 

then seized again for 10 seconds

Jan 16 Seized in sleep (11pm) for 1 1/2 minutes

Phenobarbitol - 5cc's 2x's/day

Feb 2* 3 1/2 minute seizure

Lips started to turn blue

Eyes back and body jerking (7:30pm)

Feb 3 4 minute Seizure (1 am)

Took to hospital - Pheno blood level @ 23

Back on Dilatin - 50mg 1x/day

Feb 3* 3 minute Seizure (7:30am)

Eyes back and body jerking

AFTER last 3 seizures he had high temperatures

1987

Mar 9 2 1/2 min Seizure (11:35am)

Eyes back and body jerking

Was weaning off Dilatin - Hospital put him back on 2 1/2 tsp/day

1990

Fell on garage floor at babysitters house and smacked head.  Stood up - fell - went stiff - foamed at mouth and lost consciousness. Was awake for ambulance.  Had 10 second or so Grand Mal when they were trying to attach IV.

1993

Jan 9 Seizure on Stairway

Jan 10 2 seizures in toy room

Fell off stool and turned blue

First time Stephanie witnessed one.

A star/asterisk (*) indicates that I was not taken to the hospital.

I recall some of these incidents, but not many. For instance, I remember the 2 listed in 1993, but not many details. I remember that it was a weekend, because I had seizures both Saturday and Sunday that weekend, and that was abnormal for me at the time. I remember thinking that it had been a bad weekend for seizures. (And I actually remember a bit about the one on the stool in the "toy room".)

I've also heard stories about the one in 1990 at the babysitter's house, but I don't remember the incident. From what I've heard, it was raining and I think we had been playing in the rain. Then I slipped and fell in the garage and had the seizure. But again, all of this is stories from other people. I don't actually remember anything from that day.

Also, notice that I was on and off of medicine, and switched from one medicine to another a few times until we found Tegretol. It's actually not noted when I went on Tegretol, but I assume it was somewhere in the emptiness of the log between 1987 and 1990. I was on that until 2014.

This is also not a complete log of every seizure that I had. I'm not sure why these are the ones that were logged, or why they were not all logged, but I do know that this is likely incomplete.

My Story - The beginning

On Wednesday February 6th, 1985, my mother gave birth to a healthy baby boy. Or, at least, mostly healthy.

(Let me again start by saying that this is obviously not my story, this is mostly from what I have heard from my mom, put into my own words.)

After giving birth to what appeared to be a healthy baby, the doctors took me away from my mother - as they usually do with newborn babies - to clean me up and do whatever else they normally do with a newborn baby. After waiting a while for them to return me, she realized that the woman in the bed next to her, who had also recently given birth, was holding her baby. She also realized that the woman next to her had given birth after she had, but yet that woman had her baby back and I had not been returned yet. So she asked the doctors why I had not been returned. That's when she got some news.

I was only a few minutes old, but I had started having seizures. This was obviously concerning to both the doctors and my parents.

My Story - For Epilepsy Awareness Month

This year for epilepsy awareness month I've decided to do something a bit different. Instead of posting facts about epilepsy, I'm going to be telling the story of my life with epilepsy.

I'm not quite sure how I'm going to go about this quite yet, and I'm sure that I'm going to miss some things (there's a lot to cover.) I'm thinking that these are going to be roughly twice-a-week entries, and will be tagged with "My Epilepsy Story."

Throughout this journey, I would like you all to keep a few things in mind:

1. A lot of these stories take place in a time before I can remember. I obviously can't remember things like the day I was born, and honestly can't remember much from my early childhood.
2. When someone has a tonic-clonic seizure, which is the kind that I have, they are completely unconscious. Meaning that I do not know what happens during my seizures.
3. Seizures cause issues with memory. Not only memory surrounding the event (immediately before and after the seizure are always blurry) but also general memory issues.

Because of these points, many of the stories are not my own memories, but stories and memories of my parents, siblings, friends, or others who were around. Honestly, anything prior to somewhere around the year 2000 is probably mostly from someone else, possibly with a few minor memories from my own head.

So keep all of that in mind when reading these stories - they are not entirely mine, and therefore may have been slightly altered over the years through multiple retellings. However, they will be as accurate as my mind allows.

I hope you all enjoy. The story will begin in my next post.