I should probably take a moment to introduce you to one of the most major parts of my life: Ezra :)
Ezra and I have been dating for 5 years. He is such a loyal, kind, patient (most of the time ;) hysterical, and real person. I love him to pieces and am so thankful that he has been a part of my life for so long. (For those that just stumbled upon my blog, the little girl in the picture on the right is his little sister Alex, who is 20 years younger than him!) Ezra has epilepsy. He didn't always! In fact, we had been dating for 4 years when he had his first seizure. We were on our way home from a warehouse job we were both temping at. He had been messing with the radio and I asked him a question. He didn't respond, so I turned to look at him. I was so caught off guard with what I saw that I didn't know what to think. I had never seen anyone have a seizure, so I honestly didn't know what I was seeing, but I thought it was a stroke, or a seizure. When he came out of it, his words were slightly slurred for a moment, and then it was like nothing had happened. He thought I was crazy, and had imagined it. I was terrified not to watch him every second. Just in case it might happen again. Little did I know on that one scary evening, that this very feeling would become a permanent one etched in the back of my mind, from that point on.
I'm glad I was watching like a hawk, because he did continue to have what we call "small" seizures. To the medical world, the type he has that we call "small" are called complex partial seizures. Loss of consciousness, repetitive movements (lip smacking, chewing, picking at clothes or hands) and amnesia surrounding event are common. Sometimes, small seizures can trigger a big seizure, also known as a tonic-clonic seizure (or formerly known as grand mal) where the entire brain is effected, all muscles contract and relax rapidly and cause major shaking, biting of tongue/lips, sometimes incontinence. When it is over, the person is exhausted and normally enters a deep (med term: postictal) sleep.
After many seizures, many doctors, and many tests; Ezra was officially diagnosed.
Since then, life has been a whirlwind of testing, doctors appointments, neurologist appointments, medication changes, blood level checks, laughter, tears, frustrations, failures, and successes.
I could keep telling you all about the medical mumbo-jumbo that you probably don't care too much about. And I can appreciate that. So instead, I'll take this opportunity during epilepsy awareness month to share and educate others a little bit about how this disease has effected our lives, and the lives of those we love.
This month is epilepsy awareness month. I remember when Ezra was first diagnosed. I thought: Okay. He will take some medication, and not have seizures anymore. End of story!! Then he kept having them. That's the thing about this stupid disease. There isn't always a way to pinpoint whats causing it. Therefore there isn't always a way to know which drug to use to treat it. So they try a new medicine, up the dosage for a while, and then switch meds again. The side effects of the medication are arguably worse than the epilepsy itself. He is in a daily internal struggle to remain the person he is, and not the person the medicine makes him want to be. It is exhausting to watch...I cannot imagine the agony of living it day after day. It breaks my heart.
Ezra really is one of the funniest people I know (up there close to my sister, and my dad) He used to love to be around people, make people laugh. Be on the constant move doing things, seeing things, experiencing things. There are days now, when he gets out of bed, sits in a chair, and doesn't move for the rest of the day, because of the paranoia and anxiety he experiences because of the medication.
Its been a long, hard, crazy, educational experience thus far. And although everything changed that first evening, we have made a lot of progress.
This article isn't to make you pity Ezra, or feel sorry for him or me. It sucks, yeah. But there are worse things in life, and we can all deal with things that suck one way or another. The point is that everyone has something. And through our somethings it may seem really easy to get discouraged and depressed. There are times I am sure he's wanted to throw in the towel. It seems easier to NOT have to go through some things in life. But my mama always tells me that God never wastes a wound. No scar he leaves us is without purpose of a reminder of a lesson learned, or a testament to how he loved us through it.
Sometimes, even if it doesn't make too much sense in the moment, that's all we have to cling to.
so, Happy (ha. maybe not the most appropriate term) Epilepsy Awareness Month!
I know that although I'd love to kick epilepsy right in the teeth...waking up everyday with the determination to live life despite of the disease will be winning enough!
I am proud of YOU, Ezra.
You're my heart.