Monday, May 10, 2010

Patsy Cline on the Rocks, Please.

I’m about to lose my head. I’ve figured out that the only way to manage is to start drinking. Heavily. I really need a long island iced tea, like, immediately.

I’ve developed a seizure disorder known commonly as epilepsy but less commonly as partial complex seizures with generalized seizures. It sounds pretty bad, and I suppose it is, but after watching my mom go through a life-threatening diagnosis of brain tumor, I am happy to learn that it’s just epilepsy. Treatable with meds, which I’ll start eventually, my diagnosis and I will go on to live a happy, healthy life. That is, if I can keep my driver’s license.


However my brain, as it is now, is still having all kinds of epileptic fits leaving me all fuzzy headed and dizzy. It’s as if I’m walking around underwater, all slow motion and blurry-eyed while everyone else is moving at life’s normal pace. The chronic fatigue and lack of energy has earned me the name “Narcolepsy” with my closer friends. As I type, I find myself wishing I could just curl up on the couch and drift away.


But I can’t.


Jack.


I’m still a mother. A mother who has a very energetic 3 ½ year old who, just this moment, came screaming into the room yelling “Kitty!” and jumped onto my head. And since I accidentally burned down my parent’s house recently, we’re living in a hotel without the usual grandparents and 2 acres of land to keep him occupied.


His toddler pace and my old lady pace are already unevenly matched, but this is getting ridiculous. I have absolutely zero interest in playing tag or going for a bike ride or role-playing Monsters Inc., and so I have come to refer to the TV as his nanny. Even making meals feels next to impossible. He and I have both survived on goldfish crackers and string cheese for the past few weeks. I’m lucky if he gets a vegetable or fruit in his body at any point in the day.


Fast-paced anything makes me dizzy and nauseated. It's almost like I'm drunk but without the fun lack-of-inhibitions and karaoke music. Most days, I have these strange moments where my entire left side goes numb and I sorta go away to a dream-like place in consciousness for about 20 or 30 seconds. I smell smoke when no one else does and usually this hallucinatory campfire gets so strong that it brings along it's friend Gnarly Headache and Vomiting.


After a long, nauseating day at work (nauseating because the seizures make me feel like I’m standing on a boat all day) I picked up Jack from day care and he proceeded to scream about a lost robot he wanted me to find. I found myself singing Patsy Cline’s “Crazy” as a coping device to drown out the child-abuse-inducing fit behind me. It worked and he’s bruise free and I’m still allowed to be within 100 feet of him without a monitor.


We’re doing alright. Everything will be okay. Everything is okay. I mean, in the midst of the house-fire and the moving into hotels and the EEG’s and the overdrawn bank accounts due to having worked only 3 out of 5 days a week since March, Jack is now potty trained. And obviously I’m writing again. I’ve even found a way to quit smoking.


I'm really happy to finally have a diagnosis that explains all of these crazy symptoms I've had and that justifies all of the help I've needed from friends and family. It's a life changing diagnosis, not a life threatening one. And so I suppose some days I’ll have to make it okay that the closest thing he has to a functional parent is Dora the Explorer. And I might need to learn a few more Patsy Cline songs to get me through the harder times, although singing the lyric, “…and I’m crazy for loving you…” feels really good to sing when I’m especially frustrated. In the meantime, I’m accepting meals and free babysitting services. Signup sheet is on the door. Best Western Hotel, Room 100.

8 comments:

amber. said...

Casseroles and cocktails are welcome.

*dalyn said...

omg. i love you. when i'm sober i'll write something worth reading. *d
ps. i had to write 'fiesio' to make this post happen. fiesio??? grrr. i HATE word verifuckaction.

*dalyn said...

i can't believe you quit smoking through all of this. SERIOUSLY. wow.
trust me, i know how hard that is. *d


i had to write 'amicuc' to make this post happen. *d

Valerie said...

Wow, Amber. I'm so sorry. That sounds incredibly challenging. Wish I were well enough and close enough to help out! In the meantime, sending Light and glad to see that you are reaching out for support. That's VITAL right now. And over time, I hope that things get a lot easier. This too shall pass.
Big hugs xxx

Oh BTW, did you know that service dogs are available for people with epilepsy? http://www.pbs.org/dogs-eyes/film#

Anonymous said...

Amber, remember me? I have not spoken to you in quite a while via the blogosphere, but your blogging has kept my chin up more times than I can count. I am so sorry to hear about your rough times, but I know you will get thru them and adjust back to a more even pace soon. I wish I could help you with meals and such; it would be great to live in So Cal. Take care, keep your head up and know you have people out there that think about you and pray for you.

christine said...

Jesse, my husband has epilepsy. And I have a son and a daughter whose ages added up = about 3 1/2 years...I pictured you singing Ella, but Patsy is pretty imaginable as well...i recently learned that "A friend is someone who likes you" so, even though we haven't talked since JBU prayer rooms and $5 haircuts, i still hope you can count me ... as one of those friend-things.

eablerri.

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