Drowning in Saltwater - Day 7 WEGO National Health Blog Month

Day 7 Nov. 7th - WEGO National Health Blog Month

Prompt: Redesign a hospital room

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Tonight is a hard night. Well, technically "this morning," since it's already 3:00 in the morning. This January's brain surgery won't stay off of my mind. I promised myself that I'd do my best not to think about it too much at night so that I can actually rest, but the combination of my antibiotics and AED's are giving me some major insomnia... So I can't sleep and I can't help it.

I only wish that the crying would stop. These tears are all over my keyboard as I type this and it's making my discharge seizures flare up. And along with those, my complex partial seizures are flaring up too... They've been going insane this week as it is. Not to mention that harsh"crying headache" I always get.

I am just so scared. Yeah, the death rate is only 0.1% and the risk of stroke is 2%... But one cannot help but worry that they might be that 0.1% or 2%. Let's not forget how hospital rooms seem to just scream disaster into your mind. Maybe if the rooms were a bit more inviting I'd be less scared. Maybe just a little bit.

(See Stanford's Risks and Benefits of Surgery PART ONE and PART TWO for more information on the risks and benefits of Temporal Lobectomies for Epilepsy.)

For example, those darn beds. Do they absolutely have to feel like rocks or is that just a choice the hospital makes to save on cash? I mean, I hate to complain... But even with the crappy pillow that seems as if it is stuffed with nothing but leaves, the bed is the most uncomfortable thing I have ever slept on. It wouldn't kill the hospital to purchase some Tempur-Pedic mattress covers at the very least. That would be a gift from heaven for someone like me, who seems to live there sometimes.

And what about the plain colors of paint on the walls that make you feel like you're sitting in a funeral home? Is it too much to ask for some yellow paint - or at least some other bright color that doesn't tell my brain to feel depressed and plain pissed off? I would paint my hospital room a nice dandelion yellow if I had the chance to choose.

But the one thing that definitely bothers me the most is that I am always alone due to those crappy little bed/chair "things" next to my hospital bed that the hospital assumes my parents can comfortably sleep in. Those darn things make me thankful as can be for that rock-hard hospital bed I have to sleep in. No wonder my family leaves me in the hospital alone overnight. (Which, by the way, is when all the seizures conveniently decide to happen.)

I just roll my eyes as I watch my mother or father attempt to pull out the little makeshift "bed" - which is really just a leg rest - and try to get "comfortable". Within an hour or less they say "Nope, this is hurting my back. I can't do this tonight, I will go home and come back tomorrow." A few times they have been able to pull it off, but these past few visits were't one of those times. And do note, it isn't their fault. It's not that they leave me alone all the time. They do their very best to stay with me... But bad backs and crappy chairs can't pull sleepovers.

Everytime my parents say they "can't do this tonight" I just laugh because I am not supposed to cry, right? Being a 19 year old young lady, almost 20, I should be able to be on my own. But the hospital still scares me as much as a Native American burial ground when I know a Tonic-clonic is coming soon. I need my "mommy" and "daddy" there to let me know I am not dying when a seizure takes me into the dark abyss, and especially when I wake up from the seizure into the hell that it leaves for me. So when I laugh, I am truly just holding the crying in. I find myself finally crying once my parents have left, which magically brings that Tonic-clonic seizure on almost right away.

I always feel so silly when I call the house crying, begging for my parents to come back to the hospital. I feel like I am a little girl again, calling from my friend's house during a sleepover, begging my father to pick me up because her older brother won't stop freaking me out. They answer, half asleep. "Hey, Mandy, is everything okay? What's going on?" Doing their very best to stay concerned even though they are exhausted and filled with back pain from sitting in the hospital all day.

Part of me feels happy and relieved just to hear their voices, but the cranky side of Mandy is angry that one or the other left and I start to cry. I'd usually feel embarrassed about admitting this, but who am I kidding? I'm in the hospital getting an EEG. They rip you off of your anti-epileptic drugs, make you stay awake all night listening to other patients scream from the other rooms - so you're tired and frustrated as hell. What does anyone expect from us other than to go crazy?

"Please come back I'm scared to have a seizure by myself." And it isn't a lie, because I am scared. The discharge seizures, I can handle, no problem whatsoever. I can handle the complex partial seizures too even though they make me a little nauseated, unaware, and worried that a Tonic-clonic is coming. But the Tonic-clonics are scary and impossible to get through alone - aside from the pretty auras - and so unbelievably painful when I wake up.

I then hear my father cry a little, and my mother too. Not too much, but just a few tears and sniffles. "Honey, we can't come back. We already spent a lot on gas and we have to take the kids to school in the morning. But we'll be there tomorrow, don't worry. We'll bring you some cookies. Just relax and we'll be there soon. We are praying for you and we love you. Jesus will take care of you."

I start to cry because I am still angry and scared. As if cookies are supposed to make it all better or something. And for about two minutes they just listen to me cry because I won't hang up the phone. Whichever exhausted parent is currently on the phone at that point passes me to the other parent for a repeat of the same conversation with more crying on my end. We then say our goodnights and I cry the rest of the night until a seizure just takes over and shuts me up.

My last EEG was a great example of why seizures are so painful. After crying and feeling helpless for a good hour and a half, I finally calmed down and grabbed my cell phone to play some knock-off of Angry Birds. And within that first minute of calmly playing a game I had a seizure. I hardly remember any of the aura because it was one of the most intense seizures I think I can ever recall living through, and waking up was the hardest part. It always is.

Why is it so hard, you might ask? Well, because you wake up into the hell that Tonic-clonics really are. I guarantee people would stop being so dang scared of watching you shake and grind your teeth if they could personally feel how bad it hurts to wake up. The seizure itself isn't frightening because you're not awake to feel it. So waking up... Well, that's what they ought to really be scared of.

Intense pain from head to toe - So intense that I wanted to die. I begged the nurse to make it stop and I screamed so loud that I woke up half of the hallway. She kept kindly asking me to "Shhhh... You're waking up everyone who is asleep. Don't worry it's over. Don't worry." Everything smelled and tasted like blood, which is usual. You never realize this right away because it's like you're being born again, or something. For a good five minutes your brain just doesn't work or think. I just screamed, screamed, and screamed some more.

The pain just doesn't stop, either. The head is the main place you feel it, but everywhere hurts. This time it was so bad that once I could talk I quietly cried, actually begging the nurse to kill me so it would all just stop. "Kill me... Make it stop... Make... it stop... please... I want to just die already... Don't... Don't do this to me anymore." No lie, no exaggeration. I still remember the poor nurse's face as she heard this and I can't help but feel bad for what I asked of her. Her eyes watered and she shot me up with pain killers in attempt to stop my crying.

Another nurse came in and attempted to comfort me as they both removed all my clothing. I lost control of my bladder during the seizure. Urine completely soaking the mattress. Blood, urine, an oxygen mask and rubbing alcohol wipes - it all felt disgusting. I felt disgusting. Half drugged, I laid there, still crying. Although the pain was less intense, it was still there and still terrible.

I cried for my father. He's been the one I have always cried for since I was able to speak. My mother still wonders why I cry for her less often than my father. The answer is simple, to me, at least. If someone called me a name, or did something wrong to me when I was a little girl, I counted on him to be the strong man he is and get me the justice I deserved. And in this case, I was more wronged than I ever have been. Epilepsy is hurting me, and it hurts me in ways I can never fully explain.

One of the other nurses, obviously annoyed by my 19 year old self crying "Call... daddy... I need him... He needs to come help me..." dialed him up and let me cry to him on the phone and become his problem. "Where are you daddy? I had a seizure... I'm scared... Please come back..." but he couldn't. It was 4:00 in the morning, he was exhausted, and there was nowhere comfortable for him to sit or lay down. I guess I don't blame either of my parents, though. They didn't deserve to see how much I was literally covered in my own blood anyway. I don't think I have ever seen more of my blood in my life. That would only stress them more.

Anyway... I guess if I could change one thing out of all the things in my hospital rooms, I would put another bed for my mother or father. That way I don't have to feel so scared and alone. Hopefully the story I told you from this past year has helped you understand why those stupid "beds" are not beds at all. But I suppose that feeling scared and alone are just another two parts of this sick and twisted deal that they call "living with Epilepsy," eh? I just don't know if I'm ready to risk my life to get out of this mess...

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Amanda M. Krzywonski