Chapter 1 Brooke:
Mike and I are about to engage in our evening sex, but tonight I am just not feeling it. As a matter a fact I haven't been feeling it for the past couple of weeks, but at least I've been going through the motions tonight I'm not even doing that. I push myself up to the head of the bed and press my back tightly against the headboard. I curl my knees up to my chest. "What's wrong babe?" Mike asks,
"Why'd you stop? aren't you having fun" I pull the covers up to my chin and rest it there. It suddenly dawns on me that I am freezing despite the fact that we live in Tampa Florida. "Mike I'm not feeling it today" I say, "Babe what's wrong?" He asks again, "It's not me is it?" I prey to god that he hasn't noticed that I haven't been feeling it for weeks. "No" I say in a quiet voice. "Really?" Mike asks,
"Because you do seem kind of distant lately" So I guess he has noticed. The thing about Mike and I is we are a very off again on again couple, we've broken up and gotten back together so many times it's ridiculous, this must be our 6th or 7th time back together, it's so hard to keep track. We have been dating for 2 years now which is as anyone may have guessed the longest we've stayed together. "I don't really want to talk about it" I say quietly. "Great" Mike says, "just great." I then very suddenly find myself interrupting him. The words just kind of pop out of me like some weird sort of tourette syndrome. "I'm sick" I say, and I honestly can't explain to him why I said it, I don't know that for sure, I've been trying to avoid doctors which has been hard seeing that I am a second year resident in medical school, Mike smiles lopsided. "You're just getting over something" He says. "It's probably just taking a while for you to recover" He kisses me on the top of the head. "I think you'll be fine. but all right no sex tonight you got it"
"He is absolutely right I am getting over something, and I do not mean I'm just getting over a common cold from a week ago, I actually was hospitalized for three different diseases, the cold not being one of them and by just getting over something does not mean just a week ago either, try a month ago. As a matter a fact I should be better by now, but I'm not, I haven't recovered from those three diseases so there must be something else wrong with me.
It all started when one night out of the blue I suddenly developed a strange habit of waking myself up choking and coughing it had happened three times that night. I have never had any sleep problems ever nor do I have a family history of sleeping problems so it was of course very unusual. By my third choking spell Mike who was usually a very heavy sleeper (Obviously since he wasn't woken up by the other two) rolled over and seemed as awake as could be. "You all right babe?" He asked me. "Brooke sweetie? Are you choking?" All I could do was nod my head yes. Mike had called the ambulance and I was instantly rushed through the hospital. It was found out that all though I had my tonsils out when I was 10 years old they had apparently grown back 19 years later. Not only had they grown back, but they had grown to be twice their size and were blocking my airways. On top of that, I also had an extreme case of double Pneumonia as well as mono, all three problems were apparently completely unrelated. But you know me, I'm just a bunch of loose idea's tied into one huge rubber band ball of mess. I know that as a second year in medical residency I should be using more intellegent language and that, that would be more forgivable if I were an Intern or maybe an adorable little freshman in Medical school (Undergrad that is), you know it's how an unintelligable med student would describe someone with a bunch of unrelated health issues, I guess a special snowflake would work too but how un medical sounding is that? Anyway what a mess. I can't say I ever remember being so much of a mess. If anyone in our family is a mess it's my younger brother Adam, cross that out WAS my brother Adam. He has now gone off to college and has recently launched his career in teaching, I'd say for the time he's one of the most together people I know. So now I guess it's my turn to be the mess. The loose idea's tied into one huge rubber band ball of mess that is. At least Adam was a straight forward mess. A refreshingly straight forward mess that is. I guess I would be lying If I were to say I'd never been that thing I just said I was (Don't really feel like spelling it all out again thank you very much) After all there was Freshman year of college. That year I had developed some sort of a seizure disorder, not like Grande Mall Epileptic seizures or anything like that, more like short moments where I would space out and completely forget where I was, other times I would be eating in the cafeteria and I would freeze whilst going through the motions of eating. Those seizures were of course less like seizures because I was completely aware of them, but very similar to cataplexy, Locked in Syndrome, or Stiff Person's Syndrome. Instantly I would become the center of attention at the entire table,
"Are you okay Brooke?" Someone would ask, "What's wrong Brooke?" Someone else would ask. "What happened Brooke?" Someone else would ask,
"Should we call 911?" Other's were ask. Other's were not so nice. "Look's like Dumb Blonde's back" That's right. I was nicknamed Dumb Blond even though I am not by any means dumb, It was the damn seizure's that earned me the nick name. Because of all the attention I was getting negative and positive it didn't matter to me, I stopped eating in the cafeteria. Eventually I stopped going to class to avoid humiliation as well after experiencing another kind of embarrassing kind of seizure where I would have smacking or chewing spells, fortunately those seizures were very rare because man were they ever embarrassing as I've already said. Also like the catatonic spells those seizures also weren't really seizures because I was also very well aware of them
"Ms Kennedy, you know very well I have a strict policy against chewing gum in class." My Anatomy and Physiology Prof had said, "You better go spit it out" "What?" I had asked. "You heard me, go spit out your gum" There were a couple of giggles from the classroom. "Right" I said. "My gum" I couldn't bring myself to tell him I wasn't chewing any gum, I would rather have him think that I was just being a bad student then have him think that I was having a seizure. I stood up from my seat in the front row (Lucky me having a seat in the front row) and headed over to the back of the classroom where the garbage was, only when I was to about the fourth row of seats I completely spaced out and forgot where I was. "Ms Kennedy?" The Proffessor asked.
"Are you all right?" "I'm sorry" I said, "I got uh side tracked" "Are you feeling all right?" The Proffessor asked, "Do you need to go to the nurse?" I didn't say anything, I just bolted out the door and rushed back to my dorm room where I stayed for the rest of the day. It was the story of my life Freshman year I would have said I had become a total Hihikumori but I did leave the room to go to soccer practice, where I completely blew out my knee doing pretty much nothing which was as you guessed it another unrelated health issue. Without soccer or class or the cafeteria I kept to my room and I slipped into what I thought was a deep depression but now that I think about it was more likely a complete mental breakdown. I said few words to my roommate Genica which was really sad because we got along so well the first couple months of school. Pretty soon it just annoyed me when she went out of her way to try to include me and try to snap me out of my funk. She eventually gave up trying and we drifted apart which was fine by me, that way she would never have to find out about my embarassing seizures.
"Unfortunately one day she did find out. I was sitting on my bed eating a cup of noodles, my mouth was open and was filled with a fork full of noodles. It was one of the rare times I actually ate something, I was becoming a stick figure I could tell, but food just wouldn't go down, nor would it stay down. Genica had come back into the room because apparently she had forgotten her Math book. "Hey just hear to get my math book" She said, she then took one look at me, her eyes became wide as dinner plates (And I mean that in the least literal sense of course) and she dropped her duffle and ran over to me. "Brooke?" She cried. (Literally cried that is) She is not a pretty cryer but is anyone? "Are you okay?" "Brooke hey!" She said waving her hand in my face. I snapped out of it and instantly choked on the huge wad of noodles that was in my mouth. Genica put her hand on my shoulder. "Are you okay?" She asked gently. "Brooke what happened?" I coughed up the wad of noodles and burst into tears. "Hey it's okay" Genica said stroking my hair (Not in a lesbian way, okay maybe a little, but I'm pretty sure she had a boyfriend if I remember correctly) "I' I need to go to the hospital" I stammer. "It's it's getting really bad." "What is?" She asked. I just couldn't bother to tell her about my seizures or that I barely did a single thing to blow out my knee. "Just it" I said, "Just go to class" I said. "You expect me to go to class?" She had asked. "No way, I'm staying with you, you might have another fit? Why didn't you tell me you were epileptic it's really no big deal that you are" "Because I'm not" I found myself snapping at her and I didn't really mean to snap at her, she'd been nothing but nice to me. "Fine then" Genica said, "I'll see you after class, let me know what the doctor says" She then took her duffle and ran off to class. I did end up going to the doctor eventually. Well technically the student health center. Let's just say it was a huge bust. I started crying deep chested sobs and told him that I was miserable but for some unexplainable reason I couldn't explain why I was miserable. He ended up "Prescribing" me with various over the counter pain medicines. Fuck that. Up until now I came to realize that I had nothing to worry about after that the seizure's disappeared and I was able to come back from my complete mental breakdown. But now I realize I had every reason in the world to be worried. Things haven't been the same since I was hospitalized with that unrelated trio of diseases. First of all there is the presisant cough, it seems like I at least have Pneumonia in one of my lungs still. My appatite has also been really suffering, I used to love all kinds of food especially things like prime rib and filet Mignon and rumor has it breakfast food (It's okay I guess but it's not my favorite) Now however the only thing I'm ever hungry for is plain buttered noodles and other equally bland foods. I'm sure Mike is sick of making pasta for me every night, (The athletes diet) especially since I'm only ever able to get a couple of bites. It is really nice of him to go out of his way to boil a new box of past for me every instead of making reheating it from the night before. Another thing that is really suffering is my gag reflexes, I never had a bad gag reflex by any means before but now it's completely over activated. I used to love playing the Oboe, in high school I was the master of the double life, I was both on the cool soccer team and on the totally geeky marching band, I floated between both crowds being a jock/geek hybrid. Unfortunately when I tried to play my Oboe I vomited all over the instrument and I'm pretty sure It's ruined now. Sometimes my gag reflex would just become activated for absolutely no reason whatsoever like when I was working at the hospital the other day (During one of my first days back at work since I got sick that is) here's the thing. I wasn't even doing anything remotely gross, I was just putting the doctors gloves on for him and I vomited everything that I had eaten that day which was a vanilla blizzard from Dairy Queen (Which was basically just soft served vanilla Ice cream in a blizzard cup) and a cherry soda, (Best tasting throw up ever) all over him. He gave me the rest of the day off.
"Do you want to just go to bed?" Mike asks. "Yeah I guess" I say. I am awoken again, not by choking but by some weird kind of sneezing fit or something. Mike turns on the light and sits up in bed next to me.
"You okay?" He asks me. He helps me out of bed.
"Let's go clean off the throw up" he says, I don't know what he's talking about until I realize that this weird spray stuff has been coming out of my mouth. I can't even vomit right anymore apparently. I continuing vomiting (or trying to vomit I suppose you might call it) as we make our way towards the bathroom. It tastes terrible like the chinese take out we got. That's right Mike really is sick of making me buttered noodles. I wonder if I might be having an allergic reaction to something, maybe I have suddenly developed a peanut allergy although I'm pretty sure the Kung Pao Pork, Beef and Snow Peas and Mango Chicken didn't have peanuts. I suppose they do almost always use peanut oil in Chinese food though. I can not stop the fit. "You okay?" Mike asks. Tears stream down my cheeks as I shake my head. I can feel myself suffocating. My throat becomes so closed that I suffocate and collapse to my knees.
"Brooke Hey" Mike says shaking me I can feel myself start to foam out of my mouth."Are you all right?" Mike asks for the third time that night. I am unable to answer
"C'mon Brooke" Mike says right away. "We're going to the hospital" He than picks me up, swaddles me in our bed sheets and carries me out to the car, I can not seem to stop throwing up on him, but he doesn't seem to care right now he just cares about getting me to the emergency room
"I'm not really sure how long I have been out but the next thing I know the doctor a doctor is shining a light down my throat. "Well this is quite unusual" The doctor says putting on his glasses.
"What is?" Mike asks, "It looks like her tonsils have completely blocked off her airway. "What wait! How could that be?" Mike asks, "She just had her tonsils out a month ago which was already weird enough in of it's self since she had her tonsils removed when she was a little girl" I throw up all over the doctor well the way someone with over grown tonsils would that is. That has got to be a record that is the second time I've thrown up on a doctor. "Is she going to have to have a tonsilectomy?" "Of course" The doctor says. It frightens me to think that I'm probably going to need a tonsilectomy every single month. It's probably going to be that every time my tonsils grow back in they're going to be enlarged a bit. Very rarely patients come in who have regrown their tonsils due to having special abilities where they can regenerate similar to how some species of lizards are able to regrow their limbs if cut off. On paper it sounds like it would be really cool, but if it means things like needing a tonsilectomy every month then it's really not so awesome. Thankfully I'm pretty sure that I don't have the power of regeneration, if I had that my knee would have healed it's self right away and I wouldn't have had to have a complete replacement also I probably would have recovered from the three diseases which I clearly haven't.
"This is just ridiculous" Mike says, grabbing my hand tightly. Frustration drips from his voice, although I can tell that he is trying very hard not to sound frustrated. "She just had a tonsilectomy, is she going to need one every month now? Every week? Every day?"
I might have a pretty good idea of what he is thinking. If things continue to go that way, he may be stuck having to put my food through a blender every night, which would be maybe 50 billion steps down from making buttered noodles every night. On the other hand he could go back to making normal stuff like steaks on the grill just as long as my portion goes through the blender everyone's happy. I realize that I am projecting my thoughts on to him and that of course that is not what he is thinking. How silly of me to think so. How stupid of me. "We may be getting a little bit far ahead or ourselves there son" The Doctor tells Mike, "All I can say is she needs to have her tonsils out right now before she suffocates to desk. A nurse hooks me up to some morphine and wheels me down to the opporrating room. Now Mike is crying. Really crying as in snot is running down his nose crying.
"By the time I wake up I am in some strange room which I figure must be the recovory room. My throat hurts tramendously, like even worse then it did when I had my tonsils in, tonsils are supposed to protect people from getting really bad sore throats and without them, sore throats are about 50 billion times more miserable, the feeling is very similar to the consistancy of raw hamburger, prickly raw hamburger that is, it also feels like I have a whole colony of bumble bee stingers only the stingers that is. I suppose that is a terrible analogy. After all the stingers wouldn't be able to work without being attached to the bees, after all once the bees are dead the stingers have no use. I should know that. It is after all basic biology. I feel stupid for letting myself think such a stupid thought, but I suppose I was given a heavy dose of morphine and anethesia, which I assume has warn off by now and that is why I am in so much pain. It hurts so much I cry. The nurse let's herself in shortly. She is carrying a big jar
"What's that?" I ask, my voice of course coming out raspy and throaty,
"These are your tonsils" She says nervously. I can't imagine why she is showing me my tonsils, let alone why she has kept my tonsils in the first place. "Why are you showing me my tonsils?" I ask, "Well" she says "Take a look, It's very unusual you will find" I take one look and find that yes it is very unusual, I have never seen tonsils that enlarged, much less from my own body, It appears that they must have at least gone as far as my esophogas
"How are you feeling Are you all right?" The nurse asks, "Yeah Why?" I ask, "Just that was quite the procedure" She says "My throat hurts" I moan "Can I have some ice cream or morphine" The nurse giggles a tiny bit, "Sure we could get you some ice cream" She says, "But I'm afraid we can't give you Morphine because we're going to want you fully awake when the doctor runs some tests, "Test what kinds of tests?" "He's going to ask you some questions about your medical history and maybe run some biopsy's spinal taps and other stuff. I shutter. "You okay?" The nurse asks. "I'm just cold" I lie. I am cold that much is true but I am not just cold I am also scared to death. "Would you like a blanket?" She asks. "Sure" I say absently. "I'll be back shortly, would you like chocolate or vanilla?" She asks. "Huh?" I ask, because I really had no idea that blankets came in flavors. "You said you wanted ice cream" She said. "Chocolate or vanilla?" "I don't really care" I say, "Whichever"
"All righty" she says. I really don't want any ice cream at all when I asked for Ice cream or morphine the thing I wanted was well morphine. The nurse returns with a paisley blanket that already looks like it's going to be super itchy for my already super sensitive skin. As pathetic as it may sound, I am probably already developing a rash just from looking at the thing. As for the ice cream she has ended up chosing a chocolate and vanilla duo cup. "Thanks" I say unenthusiastically. I expect the ice cream to at least sooth my excruciating sore throat a little but instead it does just the opposite, instead of having a nice smooth texture that you would expect ice cream to have it is rough and grainy causing me to cough fitfully.
"Good heavens, you okay?" The nurse asks. I set the ice cream cup on my bed post. "This ice cream hurts my throat" I say and she must think I'm really idiosyncratic and weird. "What do you mean sweetie?" She asks, I really feel like she is laughing at me. "It's so grainy" I complain.
"Hospital ice cream" She says apologetically, "You'll get used to it after a while, "It's known for being kind of bad quality, would you like something else for your pain?" "Morphine" I moan miserably. The nurse gives me a generous squeeze of the hand, "You're going to wait until after the doctor does your tests" She says, "In the mean time I could give you an IB Profin would that work okay for now" "Don't you have anything stronger like Vicoden?" "Sorry sweetie" the nurse apologizes, she is a little too touchy feely for my liking I find. "But Vicoden's a very powerful drug and when it kicks in you're not going to be able to give the doctor fully accurate answers." I have taken Vicoden before for my knee and I don't remember it causing any fun trippy effects it just caused me to be angry, constipated and not hungry, oxycontin didn't cause any fun or trippy effects either though it basically caused the same terrible effects as Vicoden but well worse, plus some other terrible effects like crippling anxiety. Morphine on the other hand. Morphine is fun. If anything that works too well for me. I was prescribed Morphine pills for my injury in addition to the Oxy and Vicoden, I would take them during the afternoon and would sleep all day, as it was my only escape from the terrible real world. The morphine pills ran out almost as fast as they were prescribed so basically on top of everything else I also had a drug problem. Now that made two of us in the family, but when Adam did drugs he was out doing them with his stripper friends at night, not in his dorm room alone in the middle of the afternoon. "Vicoden doesn't effect me the way it effects most people" I say folding my arms across my chest. "I'm sorry" The nurse says, "But you're going to have to deal with just an IB profin for now" "Fine" I say as she hands me the red pills and a cup of cold water. "Atta girl" She says patting my back. "The doctor will be with you shortly" By shortly I guess she means a couple of hours or at least that's what it feels like, I am all alone scared, cold and miserable. The tylonal or IB profin or whatever the nurse has given me hasn't worked at all. My throat continues to burn and I wonder if it is at all possible to miss your tonsils. It must be. Because I miss mine. /span/p
The doctor let's himself in. It turns out to be none other then Dr. Paul McCarthy, not to be confused with Paul McCartney the former Beatle. Paul and I go way back. We have been working together since I had my part time job as a filing clerk during the summer before my Freshman year at College, and had continued working their the next couple of summers and later started to go steady with him. So as you can imagine this is incredibly awkward. I have also shadowed him a couple of times with my first year intern group which doesn't really help the awkward factor too much.
"Hello Brooke" He says holding out his hand. I shake it woodenly. "I'm sorry I have to see you under such bad situations" He says. I shrug. "So I got some of your medical records but I'm also going to want to talk to you about some stuff"
"K" I say which is more of a letter of the alphabet then a sentence but whatever. "According to this document, you were hospitalized in June with double pneumonia, tonsilitis and mono" "right" I say staring down at the ground. "This one here says that you had a complete knee replacement in 2030, and of course we know now that you had an emergence tonsilectomy for unusual tonsil growth." He sets down the documents.
"Other then that? We've got nothing. I was hoping you could give me some additional information if you could" I guess the reason their is nothing documented about my seizure disorder is because I never ended up telling any doctors about it, I'm sure the student health doctor wasn't in any way shape or form willing to write any me any medical evaluations, he probably just saw me as a whiney histrionic annoyance. "There's more about 2007" I say. "That was the year you started college yes?" He asks, "You were so excited to start Freshman year that summer" "Yeah too bad it had to suck so much" I say. He puts down his glasses and starts jotting down a new set of notes. "Tell me a little bit about Freshman year, I know about the knee injury already, according to the document you were playing a pretty brutal game"
"No" I say shaking my head. "No what?" He asks, "It wasn't a brutal game at all. I probably lied. I mean I definitely lied. It was during practice, we hadn't even started playing yet I blew my knee out putting on my shin gaurds. I can feel my cheeks flush with embarrassment. "I'm sure you can see why I'd make up a story to make it seem less embarrassing right?" I ask. "Yes I could see that" He says. "I think we're getting somewhere." "I was just a mess Freshman year of College" I say, "A bunch of loose idea's tied into one huge rubber band ball of mess." I feel myself blushing again.
"I'm sorry" I say, "I'm second year resident I shouldn't be using such idiotic speak" Paul lets out a kind of sad chuckle. "No it's all right" He says,
"Quite poetic" "I had seizures" I blurt out. "Seizures eh?" He asks. "Yes but not like the typical epileptic kinds more like" "Petite Mal Seizures?" Paul guesses. "Well some of them I wouldn't say were really seizures at all, like sometime's I would just altogether freeze in place, "Like cataplexy" Paul says, "Right" I say, "Other times I would have lip smacking moments I don't think those were really seizures either because I was well aware of them. But then their were the third kind which were actual seizures where I would just space out and completely forget where I was or what I was talking about. I was dubbed the dumb blonde for those attacks by my classmates, "Well that's not very nice or fair of your classmates now is it?" Paul asks. "Of course it's fair" I say shrugging, "They didn't know" "Were you on any anti seizure meds?" He asks. "Brooke?" He asks when I don't answer him right away, "Are you all right Brooke?" "I'm thinking?" I say. "Are you sure?" He asked, "Because it looked to me like you were having one of your seizures you were talking about." Was I? I had been seizure free for 10 years now. "Um no I don't think so" I say, "After Freshman year of College I never had seizures again" Paul continues to jot down notes. "So you're okay?" He asks. "What?" "So you didn't have a seizure just now you don't think?" He asks, "I don't think so no" I answer. "All righty" He says. "Were you on any new or different medications that year that may have caused the seizures, "just prozac which I'd taken since 6th grade" I say, "I've basically been battling depression since puberty" He jots down notes I assume it is something about my history with depression and prozac. "My depression worsened during freshman year" I tell him.
"All right Brooke" He says, "Now that we've got this part over with let's get going with the physical part you ready Brooke?" "Ready as I'll ever be I guess" I say, "What are you going to do?" "Full body scan" He says, "Come with me" He helps me into a wheelchair and wheels me up to the lab. He asks me to take off my cloths and dress into a robe and then step into the machine. I remember this procedure from when I injured my knee but last time it hadn't been a full body MRI. I shudder. "Brooke you all right?" Paul asks, "Cold" I moan, "It's going to take 45 minutes." For some reason that seems like centuries.
Finally Paul releases me and sends me back into my recovery room. "The nurse will be in with your results" He tells me. The nurse shows up much faster than I thought she would, Paul goes over to talk to her. They talk for quite some time. I know that this is not going to be good. The nurse leaves and Paul comes over to my bed stand with the MRI "Well I've got some good news and some bad news for you Brooke which do you want to hear first" "Good" I say because it is almost guaranteed that 100% of the time people are going to want the good news first and about 99.9% of the time the good news sucks. "All righty then" He says, "The good news is we have a diagnosis" See what I mean? I suppose it's better to have a diagnosis then to go your whole life not being able to put a name to what's wrong with you. You know what? Bullshit! It's just as terrifying and sucks just as much having something with a name tagged to it. "What kind of diagnosis" "Well" Paul says, "Based on the pea shaped nodules on your connective tissue, the double jointedness and Chiari malfunction of your brain and Spinal Cord, I believe you have a condition called Ehlers Danlo's Syndrome. So that's what it s called and yes it does suck as much as having an un named disease. Just thinking about the pea shaped nodules on my connective tissue makes me feel like gagging. Peas just make me gag in general. I remember sitting at the table when I was a little kid crying and gagging while my mom forced me to eat my peas before leaving the table. But now having something like that in my body? And that disease is already just about as gag inducing as you can possibly "B'Bucket" I moan. Paul hands me a bucket while I throw up the chocolate and vanilla ice cream cup. "You all right?" Paul asks. "What's the bad news then?" I ask. Paul sighs heavily.
"The bad news is, your tonsils grew back in" "What already?" I ask, "You must be joking" "No" Paul says, "No joke, we're going to do another tonsilectomy. We'll get you some morphine and get you going" I am once again wheeled back into the opporating room. Mike quickly gets the news and rushes in to see me. "Are you all right?" He asks me. I am hooked up to morphine so I am already feeling a little loopy. "Ehler Danlos Syndrome I has it" I say. "I know" Mike says. "That's what Paul said." "Can I have my phone?" I ask I am not sure how I managed not to mess up that sentence. "Of course" Mike says