Life Update and Disability
“We are all in the gutter but some of us are looking at the stars”
We had very long summer of IV not working properly and me not managing my energy with that properly. Now that I have adapted to the change and we have increased IV so my strength is back and here I am!
While I was away, I decided to write more fiction but I love my creative non-fiction stories so I am going to share those here.
You know that feeling you get when the tornado siren goes off? It’s always a feeling of desperation. One of confusion. At some point- probably 2-3 seconds after the initial shock of its blare- a person comes to their senses and either figures out it is just a test or they need to turn the weather or news channel on the T.V. and run to the hall. Those 2-3 seconds are the longest, most uneventful time of the whole situation, but in those 2-3 seconds a person will make the most important decisions on how the scenario will unfold. Those impulsive, decisive 2-3 seconds will impact lives forever. Those 2-3 seconds will be full of decision-making and at the same time contemplation of very little more except the immediate future.
Do you think we’re the lucky ones? I do. I’m sorry I think that. I’m sorry I’m admitting it, at least. But we are. Maybe not as lucky as some people but…I think we may have a better life than most. We appreciate crap. Literally- I adore fecal matter and the likes. If we had the life we were supposed to we wouldn’t be so thankful. I don’t think. Maybe but I doubt it. I look at people who have so much and just complain. I don’t understand it. I do love complainers. They are humorous. I’m just glad I’m not one.
What is luck? You know what? I love shamrock shakes. Love. Besides that McDonalds is worthless. Who eats there? I don’t know anyone personally who likes it besides my mom and most 4-7 year olds.
Poor Ray Kroc. Was he a lucky one? Obviously he was. He founded the world’s largest fast food chain ever and died a millionaire. Probably more than a millionaire, but if you look back at Ray Kroc he wasn’t that cool and today not many know who he is, but if you say Ronald Mcdonald-everyone knows. Shoot man, Ray Kroc has totally been over-shadowed by a pedophiliac clown man. That’s unfortunate. Is Ronald a pedophile? I assume. He looks it. John Wayne Gacy didn’t look it though and he was.
Serial killers are not lucky. Did you see that interview with John’s sister? It would not be lucky to be a serial killer’s sister. Well, actually it would be. You would stand less of a chance of being a victim and you wouldn’t be the black sheep of the family. How do you think one decides upon being a serial killer? Is it that impulsive decision made in those 2-3 seconds after one kills his first victim or is it a longer thought process? Clearly, I should research this or watch MSNBC on Saturday. But, if we are lucky, which I’m assuming we are, isn’t everyone lucky in some fashion?
Most decisions that are important can be made in 2-3 seconds. Whether it is deciding to become a member of the Manson family or deciding who lives what life how. Give 2-3 seconds to think on it or don’t decide.
I was talking to Megan about the hospital tour of ’05. Yes, I cried. There is a reason no one talks about that stuff.
I asked her about it because there was this child next to me in the ICU named Sylvester. He was three when we were there. I was there but it was “we”. You were there as much as I. I don’t have any memories of, “Sylvester”. I saw a picture today. It made no sense to me as to why we had the photograph of a gaunt three-year-old with olive skin. My mom said Sylvester was a transplant kid. He had been in the ICU for two years. We celebrated his 3rd birthday there. Was he lucky?
Want to know what Megan and I remembered?
We remembered reading, “Dangerous Angels”. The scent of vanilla lotion when I was unconscious and you shaved my legs. We remember listening to Kraftwerk and people turning it off more than once. We remember always turning it back on. There was a time we found an office and you wrote, “poopyshit” on a dry-erase board. There’s the remembrance of you guys jumping on my bed while some Johnny Depp movie played. The respiratory therapist who was called Bob and took too many smoke breaks.
I feel that is all I can remember. It’s all I need to.
I know it’s not. Why don’t I remember?
So I think, “ Hey maybe you’re a lucky one.”
Zip it up and Zip it out!
Love always and forever!
Sometimes I forget. I forget how to breathe. I forget what’s reality and what’s just the ideal. Sometimes I even kind of enjoy forgetting. I know I can’t. I know it’s wrong, but forgetting makes me feel better.
I’ll remember at some point. I always do, but it’s always too late. Too inconvenient so I forget again.
I was texting Steve about, “our list.” It is a very cute and immature aspect of who I’ve become in my forgetful ways. The list is things he has to show me and it is a long list. During his texts, my best friend texted to say she couldn’t go out that night, because she had to spend the night with her dad. He has lung cancer. The tumors have grown and they are going to stop treatment.
I don’t know how to feel or how to react. I don’t know what to say. “Shit happens”? I wish I could say that. I wish she’d not have texted me. I wish I knew how to handle things. I wish I could continue talking to Steve about how much we can do still. I wish I could forget again.
Hey Little foot-
How are you? Me too.
Ok. Where does one begin? From the beginning? Oh, that’s a wonderful place to start! Wow. It’s weird how little you know. I thought you knew EVERYTHING about me. It is kray how little we know about people. Is that science, business or love?
I do not remember my first major hospital jaunt. My life was formed in a hospital: I grew up there. I saw my first R-Rated film there, kissed my first boy there, made some true, forever friends and found out who was more than a fair weathered friend there, I went to my first dance there, read my first Harry Potter book there, played my first game of poker, and learned most of what I know. But ask me a question about my time there and I’ll only tell you it was hell. I’ll often forget to mention the good people I met or the experiences I gained. I blocked the memories. I burned almost all the photographs. I destroyed the home videos. Half my life was spent in hospitals and half my life will now be forgotten forever or at least tried.
Why? Forgetting is easier.
I remember fragments, but never enough. My first admittance that I can recall was in 1995. I was 7 years old and The Lion King and riding my bike were my ultimate obsession. The reasoning behind the admittance was simple:
In Gym class my P.E. teacher noticed I could not grasp the chin-up bar so my mom -the over-reactor, who I guess had legitimate reasons-took me to a doctor. The doctor’s in the little Podunk town of, Kankakee where we lived could not satisfactorily answer my mother’s questions and I was recommended to see a specialist in, Chicago-60 miles north of home. Sadly, my mother would never get any answer that would satisfy her there either. Once she did it didn’t satisfy me.
That maybe the real reason behind my extreme loathing for IVIG. It doesn’t work. All my research-not just on WebMD- and all my random trips to medical conferences where a man with a bowtie speaks says, the IV treatment is what they do when everyone is out of other ideas.
I don’t talk about this. I should, but I have had little to no practice so just try and follow. You are a med student. You should know.
The problem is my immune system is an idiot. Scientific terminology. My immune system is attacking the myelin sheath of the nerve. Myelin is like saran wrap that covers the nerve to protect it from stuff. I think stuff. Tay- Stuff- that is another scientific term. So I take that yellow pill that looks like a wizard to suppress the immune system. Hence, IVIG.
IVIG is a blood product. It contains the immunoglobulin antibody that would help you from not getting sick. Obvi, the other med I take would cause an immune shutdown so IV cancels it out.
In perspective it’s really dumb. But interesting fact: To make 2 kilos of IVIG at least 1 thousand plasma donors are needed. Because of this, IVIG is one of the most expensive treatments out there. Dude, it’s $16,000 each treatment I get, which is every 3-4 weeks, I get about 200 kilograms and I’m really freakin’ small. This one guy who is 50 of me, (his name is Hagrid) has to receive twice that dosage, which is twice the price. Pretty ridiculous. The dosage is based on body mass. Like Advil.
I believe IV was prescribed as the main source of therapy when my idiot doctor ran out of ideas on what was wrong with me. I’d say I was about 11.
My doctor is an idiot. Just know that. No other doctor can/will treat me though because what I have is this, “great mystery that take time” They can’t figure it out so they just pass me around and he is the only one who tries, but shoot is he stupid. I love him for trying, but I should have gone to med school and you should have stayed there. We could rule the world.
At the end of 2004: Christmas break. The left over decorations messing up the pristine scenery, I stopped taking the medicine. It was a logical idea. When you’re a junior in high school all your ideas are based in logic.
After 14 days of being fine, I began to not feel well. I figured it was a brain tumor. Really. I was positive it was, actually. I hallucinated I was in a hardcore band. Obviously it was a brain tumor. EVERYONE with a brain tumor hallucinates they are Otep. That’s a fact that is based on nil.
I went to the doctor in Kankakee and took a bunch of random tests. I did not have a brain tumor. They said I was dehydrated. That is all.
At this time I was almost seventeen. I was dating Dean, who was that random guy I had lunch with last week that you thought was so cute. I totally lied to you. I knew him. I knew him a lot more than I told you. He was 24 when I was 17. Don’t judge. I can feel your judgment from here yo, but I wouldn’t allow him to meet my parents and didn’t want him near the hospital so I never told him where I was. Tay- we thought I’d be sick a week tops. It wasn’t that big of a deal. But after a week I just kept getting worse. It was so much fun. I got really sick my first full day there. I was dizzy constantly, couldn’t talk, and couldn’t focus on anything whatsoever; I just stared for hours and hours at a wallpaper dolphin border that encircled my room. As the clock ticked slowly forward, taking my strength, I lost my ability to consume any nutrients and was given a temporary feeding tube.
Again, I don’t remember the parts I’m supposed to. All I remember is how mad I was at myself and someone needed to tell Dean something. I remember at the time I worked at this pizzeria taking phone orders and a bunch of people who worked there came and brought this really sweet stuffed animal elephant. It was so cute. I think I lost it. Once I was OK they disappeared. Funny how people are either your friend when you are the life of the party or the death of the party. Few people stick around when in the middle.
Dean was best friends with mutual friends and when they came to visit it was decided Dean could/would not be allowed in the hospital scene. I don’t remember why. I think it was just decided he could not handle it.
And once he found out the truth the boy went nuts. He was depressed constantly, whining way more than even I. I was in the hospital(s) about three months at the time.
He found out the first month where I really was, but never came, which is fine. That is what I supposedly said I wanted and he couldn’t handle it. He was “too young for all that”. Mind you my friends and I were seven years his junior and handled it just fine, but ok.
Therefore that is why I freaked out. Steve is 24. If what happened in 2004 happens now…That’d suck. Major. And I can’t drag Steve into my problems. I won’t, so I’m not.
That is that.
In 7th grade I had this friend. Her grandma was our school nurse. The girl and I were good friends. One day the girl told me she couldn’t be my friend anymore. I asked why. She said, “My grandma says your going to die soon.” I remember saying, “ok.” I went down the hall and began talking about pizza. It was a 2-3 second decision I made to not explain.
Hey, Hi, How are you?
I hear your good. Not really. But that’s funny.
Congrats on the wedding! Sorry I won’t be able to make it, but I took 2-3 seconds and decided I hate you and hope your plane crashes in the Indian ocean and the air pressure change causes your eyeballs to fall out and your skull is crashed by luggage that isn’t fully secured because a child’s teddy bear has lodged the door open and as your plane hurdles toward the vast ocean your beautiful fiancé hears you scream something only you can hear in your worst nightmare and watches you pee your pants. Kidding. I hope you guys get in a fierey car crash on your way to the airport…I’m totally kiddin.
Hope it’s lovely but If it’s not don’t be surprised.
* and I also don’t have a passport.
But have a good one.
See ya later. Bye.
I’m pretty positive one cannot die from such a disease, but shit happens and my friends’ grandma said. Grandmas often know stuff. I don’t think about it. I’ve been waiting to die for decades. I’m bored. Everyone lies.
I’m dying at the age of sixty-five and I will be murdered by an H.H. Holmes-esque serial killer. I will be the last victim and clues found at the scene of the crime will lead to his capture. That is it. If that doesn’t occur I will live forever like Tuck or some Twilight vampire. I am now the boss of my demise.
Holla back girl!
I do not know if that is a civilized greeting, but Gwen Stefani wrote a song about it, so I’m entitled to believe it is. I believe EVERYTHING that woman says. Her and Cosmo magazine. Could you imagine living without them? I wouldn’t know a thing about boys or sex or… how to spell banana!
Dean is back in Chicago. I may or may not have gone to lunch with him. Same old, same old.
It was an afternoon of rehashing the past and how I “screwed” up everything in his life. I’m beginning to believe he’s got a point again.
I do have a tendency of screwing up the lives of people. I’m just that freakin’ influential.
So did I literally screw up lives? I’m confused. I think I did. But did I do something wrong? I wasn’t trying or anything, but I also wasn’t exactly trying not to.
I think I might be a bad person. I know stuff and don’t mention it. That’s what bad people do. Isn’t it? Or is that what every human being on Earth does? Steve Jobs knew a bunch of stuff he never mentioned. Is that why he got cancer? Karma? Am I going to get cancer too if I don’t mention everything I know?
I didn’t know I was going to get that sick. I knew it was a possibility, but it’s possible to have a potty-trained rabbit bounce or hop into my room right now and eat a carrot while a man, whom I don’t know, hoots in the background. I’m not going to prepare for that scenario. I’m sorry if I should, but I don’t want to or have time. If I was preparing for such an event I would not have time or energy to write you.
I need to know though what to do right now. When we we’re in high school I was Ok not caring. Every decision could easily be made in 2-3 seconds. If it couldn’t there was no reason to decide. The future was just a dream. We were small childs. We could bounce back from stuff easier then.
Dean knew what was needed to be known right then. I cannot go about telling everyone I meet,
“Hey, sometime in the future I might have a flare up and have to spend months in the hospital. Oh, and at times they may say I might die, but that’s just their best guesstimate.”
I didn’t even know that! 15 years it didn’t happen, so why would I even think. Now that I do know and understand I think overall it’d be wrong not to mention.
But when, where, how and sometimes why would I mention that? Because I have to. Whatever. It’s not that important. Chances are I’m not ever going to know the person I’m telling at the future time mentioned. Unless I do, than Jesus Fucking Christ!
I just swore. I swore the eff the other day too because I walked to the grocery store, which is like a billion and a half blocks from mi casa and it was cold, uber- and I went for pudding, ended up spending fifty dollars on alcohol and got home with 0 pudding. I was so mad.
I need a template to follow. I have yet to mention anything to Steve and really have no idea how. He is so young. He can’t handle it and I don’t really want him to have to. I like him a lot though. More than a lot. A ton. On his lunch breaks when he comes home and I’m there I sometimes just follow him about telling him I missed him. It’s annoyingly grotesque. If I don’t tell him what’s the worst that could happen?
He gets a surprise and ends up hating me? Maybe with a screwed up life? If I tell him he is just going to wig out and be thinking about something that probably will not happen.
Here’s the plan: I’m not going to communicate with him from here on out and start living off one-night stands and just not become friends with anyone else ever again. I can eat Oreos and watch Netflix every Saturday until I die.
I’m really bad at the one night-stand, though. I tried but then it turned into an every night-stand.
What Have I become my sweetest friend?
How’s life out there, ya housewife you? I saw bird salt and pepper shakers the other day. They weren’t in any obscene poses. It was cool. Tell Justin I hate his face and the Packers quarterback is hot.
PS: Do I really look like Pete Wentz?
For my science class we have to make a map showing where the latest earthquakes have occurred. Often when I look at the info I say, “Hey that earthquake was probably no quake at all, but occurred because of a large Tremor-like worm. I think this. That is what I believe so before logic or common sense kicks in I will say it. After 2-3 seconds I begin to understand that the possibility of that idea is null in void. But I think about it every week.Share!