Learning To Live With This

Friday, July 8, 2011

So its not a hobby of mine, to go around getting in the face of misfortunate bugs or anything, but- I thought that this picture was kind of appropriate. This is sort of how I feel right now. Like a fly trapped in a water glass.

Even just sitting here with my laptop opened up on the scratched up dining room table, my fingers tapping on the dusty keys- things just feel different. They are different. This feels foreign.

A year ago, the day that Christopher put on his first set of Sergeant stripes, I was sitting on the couch in the living room, and I had what can only be described as a stroke. It wasn't an actual stroke, by the way, but- thats what it felt like. I went straight to the ER in an ambulance, keep in mind I was 33 weeks pregnant and thought my baby and I were about to die, and it was there that I was misdiagnosed with "Bell's Palsy". Now, I knew that was wrong from the moment the bored ER doctor let the words come out of his mouth- this case is no fun, this lady looks just fine to me, send me someone else to poke at- because it was so much more than just a bit of facial paralysis. But I was so traumatized from the event, that I didn't put up a fight, rolled with the punches, and went home soaked in sweat, and my own urine. (You can read about that here).

364 days later, about a week ago, I was standing in the kitchen peeling sweet potatoes- Charlie sitting on the counter to my left, Evelyn sitting in her high chair to my right, Eleanore dancing and singing (or maybe complaining of hunger) behind me. And I started to feel weird. A couple days before, I had kind of blacked out while driving. I tried to brush it off as no big deal, considering my never ending symptoms that I've been having ever since the big attack a year ago, but really- in the back of my mind I knew something was up.

So I'm in the kitchen peeling sweet potatoes, and I start to feel weird. I said to Eleanore "Elie get Mommy her phone, right now sweetie". She must have sensed the urgency in my voice (which normally doesn't mean crap to her), because she ran to fetch it faster than a dog runs to catch a frisbee. If only I could get her to do that all the time. I texted my husband that something strange had just happened. I had felt that awful tar-like feeling again, the same feeling that I had felt a year ago. Like somebody was slowly pouring a bucket of invisible thick dark goo over my head. I felt it creep over the left side of my face, followed by the rest of that half of my body. It had reversed pretty quickly, after only a few seconds, but I knew something wasn't right.

Christopher called me right away, he must not have been too busy at work if he was able to just stop what he was doing and call, but in between the time of my texting and his calling- Eleanore had somehow gotten herself stuck in the glue trap by the back door (seriously, child?), and I had to go peel her out of spider legs and beetle butts.

When everyone was rescued (except for the defeated bugs who had dared sneak in through the back door), I went back to making dinner, and returned Christopher's call. As I was trying to explain to him what I had previously been feeling, my brain paused. It skipped a beat. My words were taken from me mid sentence, followed by a long moment of silence, followed by my repeating the same thing that I had already said, not knowing why I said it or what I was going to say next. And then it happened again. My words cut off where they were cut off just a minute before, followed by a long pause of silence, and then ...I was frozen.

I couldn't move. I couldn't think. I couldn't... anything.

I was like a floating head.

I couldn't feel my body. I couldn't feel my brain. My soul. Nothing.

So I started fighting it. All that I was thinking was "I can't talk". Three words was all that my brain could pull together. Out of everything going on around me, and everything going on inside of me, those three words seemed to be the only thing that existed in the anywhere. I thought them over and over again, not understanding their meaning or why I was thinking them. But I fought so hard, to think that one thought, that eventually it came out of my mouth.

"IIIIIIIIIIIIIII... ccaaaaaaaaaaaaaannnn'ttt ...taaaaaalk".

It sounded horrific when it did, my voice was lowered and my words very slurred, but- I had said it.

I'm having a stroke, I thought, after hearing my voice. And even though I was starting to use my brain to think of something other than the 3 words "I can't talk", my mouth was still stuck on my previous statement. My mouth, which now had a mind of its own I guess, repeated it over and over again, still in slow motion, and still sounding like it was being said by someone else entirely.

Christopher must have been having a similar experience, because he shouted "I'm on my way, I'm on my way, I'm on my way".

Have you noticed how in the movie Speed, Sandra Bullock says half of her lines twice? Aaaanyways...

I started realizing what was happening around me again. My speech and movement were gone, I was still a floating head, but- at least this floating head could think!

And when I had the gift of thought back- I immediately remembered my babies.
I was surrounded by terrified babies.

Charlie still on the counter beside me, covering his eyes. What did I look like? Was it my voice that was scaring him? It was probably my sobbing. Wait- I was sobbing? Why? Oh right, because I was mad! I was mad, and I was scared. But more than being scared, I was mad. The moment I remembered my babies, but before I could turn my body to look at them, I got so angry at whoever it was or wasn't that poured this awful bucket of invisible tar on me, that I wanted to scream. But because my vocal chords had taken a vacation to an old folks home, the only thing that I was able to do, was cry. So I cried. And I cried a lot. And loudly.

Evelyn cried because I was crying. So then Charlie started crying.

But my strong girl Eleanore, who only fake cried to be a cool kid in the club, asked "Mommy are you okay? Whats happening?". What a little adult she is sometimes.

And so I continued to fight it. And I found that strength. And I turned my body to look at her, standing there clutching the door to the refrigerator with her white knuckled fingers, and I said "don't be afraid, sweetie". I said it! I had turned my body, and I had said it! It came out slurred, and in a voice other than my own, but- ...and of course she was still afraid. They all were. And so was I.

The tar started drying up though, and within the next minute, my speech had returned. I reassured them all that I was fine, even though I knew I wasn't, and then- "Distract them!", I thought. I instant Netflix'd The Land Before Time 398, they raced to the couch to watch it, and as soon as they were entranced in Little Foot, Sarah, and all of the "yep yep yep"'s that the tv could throw at them- I broke down.

What had just happened to me? No really. What the fuck had just happened to me?

Next thing I know, Christopher is coming towards me, picking me up and helping me walk into the kitchen, and then holding me tightly and whispering in a calm voice not to talk. ...I had lost my speech and movement again.

I cried into his shirt. I soaked it with my snot. And every time I'd try to say whatever thought that I wanted so badly to let out, he reminded me that it was just me and him, and I could say it later.

God, I love you Christopher.

It all lasted about 45 minutes. I was exhausted afterwards. And desperate. Not for any answers, or normalcy, but- for my husband not to leave me. As long as he was there, I could do it. And- please don't leave me alone with these babies again. Don't make them go through that again.

Later on that night, we realized that it had been exactly a year to the day, since my last attack, and joked around how maybe it was a yearly occurrence that we could prepare for and throw a party for. I was willing to hang up streamers even! But- the next morning our joking was stomped out with seriousness when it happened again. This time so badly that I was stuck lying flat on the couch with drool pouring out of my mouth, unable to even blink. Couldn't speak a word, couldn't think a thought... just, couldn't.

And it lasted for 7 hours. Seven, long, exhausting hours. I went in and out of my wide awake coma. We went to the ER, and in between attacks I tried to tell them that I was having a hemiplegic migraine, not that they even knew what that was, but I looked fine to them, so I could tell they really didn't give a crap. The check in nurse sent the nurse practitioner in to see me and to send me home, but my attack returned just in time for her to see me stroking out (thats what we call it now. Ya know, kinda like rocking out, only, stroke style and way awesomer?), so they gave me a room and said they'd need to do a cat scan (which they ended up not doing). 3 hours later they sent me home doped up on muscle relaxers and anti anxiety meds. Fine, I'll take it. By the time I left I was so worn out I don't think I even knew my own name. The things that happened in the next few hours I thought I had dreamt. Talking on the phone to my best friend, watching Harry Potter- I thought I was dreaming. And the kicker- the drugs didn't even work. They just made it so that I didn't care when I had my next attack. I didn't even know I had had one, until my husband told me.

And now I stroke out every day. Multiple times a day. It just, happens.

Its not as bad as that 7 hour spell where Chris was wiping the snot off of my face and telling me how to breathe since I had managed to completely forget how lungs work, but- everyday I feel the tar, and every day my brain goes dead.

Floating head. Stroking out. The tar. Lobster claws. ...our hemiplegic migraine slang. Lets review, shall we?

Floating head: when I can't feel my body.

Stroking out: when I lose my speech and sound like a drunk old man.

The tar: that awesome sensation of being hit over the head with a bucket of thick hot molasses.

Lobster claw: what my arms and hands do when they go paralyzed.

I'm not mad at you for calling me lobster claw anymore, honey. You're totally right.

I don't usually take self portraits, but I had been working on a diary of my C25k (which has since been canned as a sucky precautionary measure), and the day that I started really feeling good about my running, the day of the night that I had had my first attack in a year, I had quickly snapped a shot of me wiping away the fog from the bathroom mirror after my post workout shower.

I felt so good about myself that day. I had recently decided that I wasn't going to let my condition control my life. Or, the fear of my condition. The minor symptoms I could handle- face going numb, tingling in my body parts, dizzy spells and flashing lights, auditory hallucinations, intolerance to heat, inability to control my body temperature, etc etc. But even with all of that becoming my new normal, I was always kind of living in fear of another big attack. Maybe it was a once in a lifetime thing. Maybe I'd never have another one again? I had gone this long without having one, maybe I'd go forever.

I had been running for 2 weeks, when I got stuck with another attack. Just two weeks. Whhhy!

We've got so many things to figure out now, as a family. I have personal boulders I need to climb over, and we've got paths to explore as I conquer and fail my struggles.

So what if I stoke out at the grocery store and the cashier calls 911 because she thinks I'm dying. It might happen, and thats okay. I can't drive anymore, not off base at least. It would kind of suck to be a floating head in the car, right? I'm going to have to learn how to rely on other people. Its one of the most embarrassing things ever, to let anybody see me like that, but this is who I am and we all have to accept it. I have to prepare my kids. This is how you call 911, this is how you call the neighbor, this is what you say to anyone that tries to help me.

There are still so many beautiful things in this world. Like oranges, and snuggling on the couch with my babies, and Texas sunsets- I'm not going to let a little paralysis get me down.

I've seen several doctors in the last year. I think the count is up to 6? Nobody can help me. Nobody will help me. I've finally found a doctor who at least understands what it is, but unfortunately, he says that its over even his head (and hes a migraine specialist). Hes on the hunt for a new neurologist who can take on the case and hopefully treat me.

See. We're strong, us Hermans are.
Okay and kind of silly.
(can't let those pictures from the now non existent running diary to go to waste, even though I look totally crazy in that last one, haha).

We'll get through this. Even if I am moaning like a whale instead of speaking, and covering my husbands work shirt in snot while I cry through it.

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