Have you ever felt like your life's being thrown into a trajectory of a whirlwind and you just don't know where it starts and where it ends? I do. I'm not even slightly excited that it's a Friday -- and that worries me. Frankly, I'm not sure what happened the rest of the week. I vaguely remember being in Toledo shooting engagement photos last weekend and now I'm here.. relentlessly trying to salvage what's left of my sanity. Writing has always been an outlet for me, and although it's going to be hard to share some of it, I'm hoping it'll give me back some sense of normalcy.
Mike's seizures seem to be getting progressively worse. At first, they were strictly sensory -- funny taste in the mouth, weird smell. He used to get headaches with it which led us to think it might be migraines, but that was eventually ruled out. The sensory episodes grew more frequent, though completely random. Then he started complaining about getting dizzy, or losing orientation. Still, we couldn't figure out whether they were related to anything or just arbitrary symptoms. There didn't seem to be a contributing factor or a specific trigger for any of it. Then about a month ago, he actually lost consciousness (couldn''t tell how long) while he was driving to work one day. We were very blessed that he didn't get hurt, or anyone else. But when he finally got to work and called me to tell me what happened, I could feel the fear in his voice. He suspected that it was a seizure so I suggested that he call his neurologist right away and that's when we found out (after months and months of seeing the doctor and NOT getting a diagnosis) that he actually has partial seizure disorder, otherwise known as epilepsy, and that he is recommend not to drive at least until we get the seizures under control.
Epilepsy? I couldn't think of a word more intimidating. My initial reaction was less than stellar, and I don't even remember if I sounded anything close to compassionate. I mean I knew Mike's condition wasn't like of the social stigma that people think when they hear the word -- person laying on the floor, entire body convulsing, foaming up on the mouth -- but I felt afraid of the unknown. I remember getting angry at the neurologist for taking this long to tell us what was really going on. On those doctor visits that I accompanied Mike, he'd vaguely mention the word "seizure", almost as if he was afraid to say it. I grew even angrier realizing that he's had Mike on the same medication for almost a year and done nothing but increase the dosage everytime Mike complains about the symptoms getting worse or more erratic. Obviously, the drug's not working... it would only make sense to try a different approach, right? But what do I know? Watching the weekly episode of House certainly doesn't make me an instant diagnostician -- but what I am is a concerned wife and friend. We have found another neurologist who has more experience with seizures but the appointment's not for another couple of weeks. He's also made an appointment with an epilepsy center (the only one in our state) where they might keep him for a couple of days for testing and observation but that's not til the end of the month. The appointments couldn't come any sooner -- it's like holding our breath..... until we find some real answers.
I know that it's expected for me to feel this way but I feel helpless sometimes, I feel that there must be much more that I could do. I worry that he would fall in the likes of those who let the epilepsy define who they are and only see the limitations, as oppose to focusing on the opportunities. Although I know that that's not the person I married, I feel responsible for constantly reminding him that. Since the diagnosis, there has been this unstated cloud of tension in the house. Even though he doesn't come out and say it, I know he hates that he has become dependent, that he is not able to just take off and go where he wants. I know he's frustrated that some people have made him feel as if his life is now pretty much "over" -- which couldn't be farther from the truth. Can I blame him? NO! A thousand times no, I can only stand by and be there for him as long as I am physically and mentally and emotionally able.
Mike's seizures seem to be getting progressively worse. At first, they were strictly sensory -- funny taste in the mouth, weird smell. He used to get headaches with it which led us to think it might be migraines, but that was eventually ruled out. The sensory episodes grew more frequent, though completely random. Then he started complaining about getting dizzy, or losing orientation. Still, we couldn't figure out whether they were related to anything or just arbitrary symptoms. There didn't seem to be a contributing factor or a specific trigger for any of it. Then about a month ago, he actually lost consciousness (couldn''t tell how long) while he was driving to work one day. We were very blessed that he didn't get hurt, or anyone else. But when he finally got to work and called me to tell me what happened, I could feel the fear in his voice. He suspected that it was a seizure so I suggested that he call his neurologist right away and that's when we found out (after months and months of seeing the doctor and NOT getting a diagnosis) that he actually has partial seizure disorder, otherwise known as epilepsy, and that he is recommend not to drive at least until we get the seizures under control.
Epilepsy? I couldn't think of a word more intimidating. My initial reaction was less than stellar, and I don't even remember if I sounded anything close to compassionate. I mean I knew Mike's condition wasn't like of the social stigma that people think when they hear the word -- person laying on the floor, entire body convulsing, foaming up on the mouth -- but I felt afraid of the unknown. I remember getting angry at the neurologist for taking this long to tell us what was really going on. On those doctor visits that I accompanied Mike, he'd vaguely mention the word "seizure", almost as if he was afraid to say it. I grew even angrier realizing that he's had Mike on the same medication for almost a year and done nothing but increase the dosage everytime Mike complains about the symptoms getting worse or more erratic. Obviously, the drug's not working... it would only make sense to try a different approach, right? But what do I know? Watching the weekly episode of House certainly doesn't make me an instant diagnostician -- but what I am is a concerned wife and friend. We have found another neurologist who has more experience with seizures but the appointment's not for another couple of weeks. He's also made an appointment with an epilepsy center (the only one in our state) where they might keep him for a couple of days for testing and observation but that's not til the end of the month. The appointments couldn't come any sooner -- it's like holding our breath..... until we find some real answers.
I know that it's expected for me to feel this way but I feel helpless sometimes, I feel that there must be much more that I could do. I worry that he would fall in the likes of those who let the epilepsy define who they are and only see the limitations, as oppose to focusing on the opportunities. Although I know that that's not the person I married, I feel responsible for constantly reminding him that. Since the diagnosis, there has been this unstated cloud of tension in the house. Even though he doesn't come out and say it, I know he hates that he has become dependent, that he is not able to just take off and go where he wants. I know he's frustrated that some people have made him feel as if his life is now pretty much "over" -- which couldn't be farther from the truth. Can I blame him? NO! A thousand times no, I can only stand by and be there for him as long as I am physically and mentally and emotionally able.
I just hope he knows that....
5 comments:
wow - I'm sorry! I hope you are able to find out some answers and his coming up appointments and able to get them under control! Good luck!!!!
Oh, my gosh, I cannot even imagine what you and Mike are going through. Whatever the results are, I am sure he knows that you are there for him. I think it's only normal to feel angry especially at the doctors - I know I would be. I am sending you positive thoughts and prayers for some real answers soon!
I hope you're able to get some answers soon. this must be a scary thing to go through.
I think that Mike is blessed to have such a wonderful and caring wife and friend. And yeah...his life is HARDLY over...this is just a bump in the road that you have to figure out how to cross but it's not IMPOSSIBLE to cross. Keep me posted!
Anne, so sorry to hear about Mike. I agree with Kimberly, this is just a bump you'll have to get over. You'll find the right medicine over time and Mike will get his independence back. Keep your chin up.
Post a Comment