Migranes and Hula-Hoops

Last night I had my first real headache since having gamma knife for my arteriovenous malformation. In the past I have had random pains, weird sensations, and passing discomfort, but nothing like this. I called the pharmacy and asked them if I had any refills, they replied, "of what?" They seemed taken aback when I said, "Whatever, anything really." No dice.

My head felt like it was splitting open, but I still drove 20 miles to take a baby bird to a wildlife refuge, and went to two separate stores looking for hula-hoops for one of my kids, wondering all the while if I was going to drop dead in the process. By time I got home (after three temper tantrums--the baby's, not mine), I am bitched out by my older child about the sub-par hula-hoop. She followed me around the house, hula-hooping and moaning, making faces and stomping her feet to demonstrate what a terrible hula-hoop her mother had imposed on her. I was curled up, holding my head in my hands, and I tried my best to think of a way to constructively ask her to stop, but that came out was: "Will you please fuck off?"

I am thinking about writing a book about my AVM experience, but if that doesn't work out, maybe I'll give Lynne Spears a run for her money and write one on parenting instead. I will call it: "Profane Parenting: Nurturing Through Expletives for the Vascularly Challenged"

Who else has used this technique?

Insurance is a Magical Thing!

(Photoshop Dramatization)

Well, it turns out that if your insurance decides to cover Botox for neurological damage, Neurologists suddenly decide that wrinkles are neurological damage! From now on everyone will just have to picture my world weary, sardonic expression in their mind's eye! Wooohoooo!

Is That a Giant Sucking Sound, or is it Just Me?

There are international agreements governing trade, and countries who are parties to the agreements take on certain obligations that prevents them from erecting barriers to free trade. For example, customs rules. A country must agree to publish instructions on what you must do in order to get things through customs. Sounds simple, but there is a reason the rule was needed. In order to protect domestic industries, countries come up with clever and sneaky ways to foil trade. Many only published lists of things that you can't do if you want to get things through customs. An affirmative idea is infinitely more powerful than a negative. Imagine if you asked my how to roast a chicken, and I said, "Don't boil it." Not very helpful, although technically true.

Lately I have been inspired by this concept as it relates to personal healing, both for my brain and my spirit. I don't want my AVM to bleed, I don' want to have gamma knife again, I don't want a craniotomy, I don't want a seizure, a migraine, or an anuerysm.

These are all really general thoughts and fears, diffuse and tress induceing. They don't really address my hopes, my wants or desires. From now on I am trying to channel my thoughts into the affirmative. I want the AVM to be obliterated. I want my brain to heal. I want to relax. If I give my brain clear instructions, I am hoping to remove the barriers to healing. A treaty, if you will, to root out the sneaky processes that undermine progress. And while Ross Perot might disagree with my logic, I'm hoping the benefits will lead to better relations between my body and mind...after all, they're stuck being neighbors, they might as well get along.

Supportive...Like a Jock Strap

I view myself as something of broken person. Maybe other AVM survivors don't feel this way, and I hope no one takes offense when I say, in some respects, we all are. The stress and depression, the anger, the rage, the brain damage...we are a fragile bunch. I have made a lot of friends who are dealing with arteriovenous malformations, either their own, their partner's, their child's...no matter how this enters your life, It leaves you changed. Most people I have met have been amazing. Others have...not been. The question is, are the people who are waaay out of line the ones who need the most help and support? Are the people who are inappropriate positioned to benefit most from community? Maybe. But, not from me. I recognize my own limitations. I can nurture and feel empathy, but only to a limit. Growing up with three sisters, I developed a keen sense for when it was time to throw down my school bag and fight. (Our mother dressed us in hideous, poorly made, cheap clothing--as a result we all became champion bare knuckle boxers in the school yard.) I am quick to stand up for those I care about, often with inappropriate force and swiftness. Its possible that some people act like assholes because they have monster AVMs, catastrophic brain damage, etc. When caustic attitudes are directed at me or my friends, however, the only hand I am able to extend to reach out to them, tends to be a fist.

An "A" for Effort!

What ever happened to the good old days, when your best efforts, no matter how dismal the results, still earned a shiny gold star and a mello-smello sticker from the teacher? I crashed and burned today on my second of four final exams, like Jon Bon Jovi--shot doooooown in a blaze of glorrrr----aayyyy!!! But I feel like I worked way harder than any other person in the class. As far as I'm concerned, I should have rated a standing ovation every time I went to class. Extra credit for resisting the urge to walk out every time I was gripped by a panic attack and couldn't breathe. Instead, all of my efforts will be judged by three typed pages that, instead of addressing the exam questions, criticize the professor's grammar. One of my answers relating to a question about federal regulations went something like this: (and yes, I did use bold)

These sentences are all written in a passive voice!!!!!!!!!!! WHO did WHAT? WHO is the ACTOR??!!! WHAT/WHO are the SUBJECTS of these sentences!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!There is no way to answer any of these questions!

So, maybe I suck at being a student right now. They say those who can't do teach. (Ironically, I have no idea how to punctuate that sentence.) Maybe it's true for the professor and I both.

So What is it That You Do, Exactly?

I should have gone to medical school. That's the racket to be in, for sure. Yes, you have to go to school forever, and I hear it's pretty hard, but, you know what they say:
Q: "What do you call the guy who graduates last in his class in med school?"
A: "Doctor."

(insert drum roll--ba-dum-dum!)

After all, for all the money it costs to "follow up" with a neurologist, I fail to see exactly what it is they are doing. I went for an appointment after gamma knife, and had asked for botox injections when I made the appointment. I have annoying muscle spasms in my face, and a little botox can make it stop. So I arrive, expecting to leave a new woman (and planning to claim that the spasms also affected all my "problem areas"). Well, apparently the "botox appointment" is actually an appointment to make a botox appointment. What's more, the doctor says he will only do the botox on one side, which he says will make me look asymmetrical. So, I tell him I'd like to get rid of the spasms--but since I'm not so keen on looking like Quasimodo, I ask if he can just do it on both sides. No. He will only do it in a disfiguring way. And not today. And by the way, that will be $300.

As he picks up his clipboard and leaves the examining room, my mind is racing. This can't be "it"! He's got to do something, right? Wrong. As a last ditch effort I call after him, panicked.

"Wait!"
He turns around, clearly not pleased, with a weary look on his face.

With my voice full of hope, I plead, "Do you think I am 'totally and permanently disabled'?"

He shakes his head and smirks, "No" is all I hear as he shuffles off to collect his next check, leaving me slumped on the table, shattered and defeated.

Some People Have it Worse Than You...

It worked for these people!

...In case you haven't heard--but I'm sure you have. Got an aneurysm? At least you're not buried in rubble in China! Cerebral hemorrhage? At least your house didn't burn down! Well, when you put it that way, my situation is fucking great! What is with the compulsion people have to try to cheer you up by both shaming you for being disappointed (rightfully) for getting dealt a bad hand, while simultaneously encouraging you to wallow in schadenfreude? How, exactly, is this supposed to be "helpful"?

I am going to see how others respond to this. From now on, it will be my response to everything:

Q: "Have you seen my pen?"

A: "At least you're not blind!"

Q: "Where's the remote?"

A: "At least you still have your family!"

We'll see how helpful people think it is.

Ugh. Finals.

I am currently on hiatus from following doctor's orders, overloaded on caffeine and nicotine, cramming for finals. If I stay away from the blood pressure cuff, will that mean that my pressure isn't skyrocketing?

Cause and Effect?

Having an AVM makes you question, question, question. There are no satisfying answers, no solutions. Why did this happen? Is it because I kicked that kid in the balls in third grade at the roller skating party with my skates still on? Is it because I spent too much time laughing at other people's misfortunes? Or because I don't have enough faith in god?

Something goes wrong and you think, okay, well I did a lot of horrible things in life that were wrong, and this is my punishment, but surely, I must be all paid up on karmic debt by now. And then something else goes wrong. You scramble for all the variables, the x's and y's. You arrange and rearrange them like an algebraic equation. The harder you try for the solution, the more disjointed your logic becomes. You become a caveman, never certain, unsure in a threatening and unpredictable world.

"It rains because I am angry!"

Today I was visiting a friend in the hospital. She also has an arteriovenous malformation. After visiting hours were over, her mother and I were walking through the hospital corridors when I whapped my elbow on a door frame. At that exact moment a very loud, low humming sound reverberated through the hospital. It sounded like an enormous tuning fork. I immediately started shaking my arm, waving it wildly up and down. My friend's mom turned around, and asked if my arm was okay, and without pausing to think I blurted, "Is that sound coming out of my arm?!" She looked puzzled and said, "no, that's the intercom, there's no sound coming out of your arm." I looked at her and told her I was just having a little trouble with cause and effect. She burst out laughing, and soon we were both in a hysterical fit, doubled over. She knew exactly what I meant.

Excuses Excuses

I really suck at asserting the arteriovenous malformation defense when it would be most useful, when it really should have been considered. I didn't do it when I decided to return to school full time a week after having gamma knife--no rest? Emotional trauma? No problem (or so I thought...) But I must admit, I have thrown it out it completely trivial circumstances at times when my patience was wearing thin. It's really like dropping a nuclear bomb in a water balloon fight, and it gives me a small and sick sense of satisfaction. Example: I didn't pay credit card bill. I love how the people from collections call, acting personally offended, insincerely asking if there was any "special reason you didn't pay." Yes. I don't have any money. Is that 'special'? I doubt it. So I just say I forgot, and will pay it right away. But yet they keep calling. Finally they tell me, "I know that everyone is busy with work and everything else they have going on, but you need to pay on time."

So I just drop it.

"Well no actually, I'm not busy with work. I can't work. I actually just had brain surgery, and am trying to recover, and frankly, I am not one hundred percent yet. So, no. "

Embarrassed stammering. Fewer phone calls.

Not Even a Little Sudafed?

To be fair, my neurosurgeon at the Mayo Clinic told me I can take whatever I want. Aspirin? Sure! Antihistamines? Yup. Gin? ...Um, okay. This would seem like good news, but with one major caveat: I can take whatever I want, but if I have a cerebral hemorrhage, all of these things will make it worse.

Oh, well in that case, pass the Benadryl and Bayer martinis! I felt like a little kid who asks, "Can I have a cookie?" Only to be told by some snide adult, "Yes, you can have a cookie, but you may not have one."

So everything was fine until I woke up last week hacking and unable to breath through my nose. My head and sinuses felt like they were filled with hot cement. I went out and bought the saline nasal spray. I really wanted the Nasonex, but when I tried to garner the pharmacist's endorsement he threw out his arms in front of him, as though trying to physically deflect liability, as soon as I said, "I have an AVM in my brain.." and flat out refused to give me advice.

Let me tell you, spraying salt water up your nose when you are sick is exactly like being sick and also spraying salt water up your nose. It just adds insult to injury. At 4 am I lost my willpower and downed an E&J brandy and Robitussin hot toddie (I am the MacGuyver of crunk juice pharmacology!) I finally stopped coughing and fell asleep, and actually lived to tell about it- a minor victory.

Catch 22

When writing cover letters to perspective employers, you have to walk a very fine line. Yes, you want to come across as honest and sincere, but not to the point that it reads like a monologue from a group therapy session. This is especially true if you suffer from "word vomit" as I do, and you open your mouth and experience something like an out of body experience, witnessing in horror but powerless to stop the nonsense that comes spewing out. No way to clean it up. I am so acutely aware of this affliction, that I practice interview questions with my husband.

Example:

Husband: "Tell me about a time that you had to work with a person that was difficult to get along with, and how you made it work."

Me: "Oh, that's easy! My mother is mentally ill, and she is just completely impossible to get along with in any kind of way, so I just finally decided that rather than freaking out and screaming at her when she is unbearable and being in a psychotic rage every time I see her, I just stopped talking to her completely. I can't solve her problems. She's crazy."

Husband: "Um, that's a good start, but maybe you shouldn't tell them right off the bat that mental illness runs in your family."

Me: "Oh. I see what you mean."

Word vomit.

So, I have bad grades. Honestly, they are miserable. And I can use the cover letter I send with my resume to explain any "extenuating circumstances" that would explain my sub-optimal performance this year. I have the best, most iron clad excuse, but show me a person that ever got a job by opening with, "My grades suffered this year because I had brain surgery, and suffer from legitimate anxiety that my brain may bleed at any moment."

Word vomit.

I think one of the most difficult things about this illness is the irony.

What, No 3 Month Post-Op MRI?

After having gamma knife radio surgery at the Mayo Clinic, I vaguely remember calling out from the gurney as I was being wheeled into the recovery area, "What do I do now?"

My surgeon replied, "Come back in a year for an MRI."

A year?

I just found out I had something wrong with my brain, which I have not yet even fully processed about which I know virtually nothing. I just had brain surgery. BRAIN SURGERY. And you want to see me--in a year? If it wasn't for the blissfully heavy handed anesthesiologist's generosity with the fentanyl, I would have protested. Instead I remember just muttering, "If I were brain damaged, would I already know?" before passing out. It wouldn't have made any difference, the surgeon was clearly nonplussed when I turned out to be the only patient on the slate to have gamma that day that screamed "F*CK!!!!!!!" when the halo was screwed into my skull. I don't have any idea how those other people took that in stride.

Now I am just waiting. Waiting and wishing I could have another shot of fentanyl.

AVMs, Weave and Irrational Panic

For those of you who lack an intimate knowledge of the world of hair extensions and weave, let me explain kanekalon: kanekalon is kinky, synthetic, bulk "hair" used for adding braided hair extensions. I'm from Detroit, which is probably the kanekalon capital of the world, and I am well acquainted with this product. Back in the day, during my short lived and ill fated stint in beauty school, I used to spend hours braiding this stuff until my fingers ached for glamor girls on a budget. Everyone I knew did this, and we referred to ourselves as "kitchiticians", because we did hair in our kitchens and weren't licensed cosmetologists.

The other day, at the request of a friend, I was back to my old ways. She was sitting patiently in my kitchen chair while I separated the bulk kanekalon into small braid-sized portions. I could almost do this with my eyes closed, but you have to be careful, or it will tangle up like a Barbie that's been in the bathtub, and you have to throw it out.

I was pulling a clump of the kanekalon loose when it happened. A big, ratty snarl appeared out of nowhere. I held the stuff out in front of me and gently tried to pull it loose without destroying the hair. While I was trying to ease the knot out it hit me: This ratty, nappy nest looked just like the image I had seen of my angiogram. I was completely horrified, and a shudder ran through my body. I felt like my fingers were actually enmeshed in my own brain. I couldn't get free fast enough, and I dropped the clump on the floor like it was covered in spiders. I can't even look at kanekalon anymore.

Why Yes, I DO Have Radioactive Blood

It's been five months since I was diagnosed with an arterio-venous malformation in the brain. Since then my life has been a crash course in neurology…gamma knife, embolization, craniotomy, occlusion, obliteration, Spetzler grade, linear accelerator, nidus, intracranial…these words roll off my tongue as easily as I used to say, "A pint of Guinness, please!" Words that, sadly, I am no longer allowed to say. It's been 3 and a half months since I had gamma knife radiosurgery on my brain.

Before all of this happened (well, at least before I knew it had happened--I guess the AVM was there all my life--thanks mom) I could not keep a cell phone for more than a month before it was completely useless. As soon as it came in contact with my head I couldn't get a signal to save my life. I always suspected it was a cause and effect relationship, and that the proximity to my head was actually causing the cell phone dysfunction. Interestingly, I no longer have this problem, and secretly credit the radiation. Of course the neurosurgeon says that's impossible, and that I am neither radioactive nor in possession of any new and mysterious superpowers. I don't know why they are always trying to take away what little I still have.

So now I am able to chat away like everyone else, disconnected from my environment, cell phone glued to my hand…but I still haven't found anyone who wants to debate the virtues of proton beam treatment, or meet over a pint of Diet Coke.

"Uncommon" Complications & Gamma Knife

Britney's such a sweetheart, shaving her head in a show of solidarity for me!

When I was a teenager, the girls used to say, "That's just common" as a put-down. I liked to think of myself as uncommon then, and my intuition is proving correct. Localized hair loss is listed as an "uncommon complication" of gamma knife treatment for "superficial AVMs." At first when I read this I was like, 'superficial AVMs?' But that was just me being common, as they say. "Superficial" in the context of AVMs mean close to the surface of the brain. I really thought some completely callous neurosurgeon was writing this stuff, implying that cerebral AVMs were merely frivolous nuisances only hypochondriacs would seek treatment for.

Well, my AVM is superficial, and so am I. I am superficial, but uncommon. A perfect rectangle of my hair fell out over the area of my brain that was treated with gamma knife. It was about 2 weeks after the procedure, and I was looking in the mirror. All of a sudden, and all at once, it just let go, and fell out. My scalp was so bald, it didn't really feel like skin. My rage was all consuming. The part of my personality that tends to be on the base side had been whispering, 'at least you still have your hair' ever since I opted against the craniotomy. Now I was--yet again--a statistical anomaly. Hair means a lot to a woman. I called my dad, crying and wailed, "why couldn't my pubes have fallen out instead!?" through the sobs. He was laughing too hard to reply, but I was completely serious.

The worst part wasn't the hair loss, it was the feeling that again I was among the unlucky ones. That I was that 1:100,000. That's a bad feeling when you are dealing with AMV statistics. If I had expected the hair to fall out, I could have handled it, no problem. For anyone going through the same thing, hair loss seems to be a lot more common than we are led to believe. Don't worry, it really will grow back. I already have fuzz. If you need to rant, we already have something "in common."