I wanted to be like one of those kids you see on TV.  The ones who have Leukemia, but always have a smile on their face; the St. Jude’s kids.  When I was eleven years old I was convinced I had a brain tumor.  I started getting headaches, which in and of itself isn’t much to worry about; apparently headaches run in my family, along with dizziness and alcoholism.  The worrying part was that they were occurring seemingly all the time.  So, I began to wonder what was going on in my head.

I looked in my mom’s medical book to see if I could figure out what was wrong. I used to love looking through it and reading about all of the bizarre diseases a person could get and knowing that since I wasn’t living in some remote jungle or in the year 1802, I was relatively free from anything too serious. That is until I decided to look up “headache”. In the index was a fairly short list of the things that could be wrong:  cancer of; abscess of; enlargement of; injuries of; migraine; tension and finally… brain tumors.  Now why the words brain and tumor stood out, I’ll never know, but I instinctively knew that’s what my problem was.  I flipped to page 295 and began reading.  The more I read the more convinced I became that this was my problem.  One would think that I had a host of symptoms, but alas, I only had one:  the headache!  I didn’t have problems with my vision or motor control.  The pain wasn’t of “recent onset”.  No loss of speech, or the insidious “mental changes”.  Nope, the only thing I had were fairly frequent headaches.

I read further on to see what my prognosis was.  Now, who knew that there were so many different types of brain tumors?  You’ve got your benign and malignant tumors; tumors that just cause seizures; tumors that aren’t really tumors but only seem like tumors.  It was mind boggling.  The fact that this was a medical book that I was reading chock full of medical jargon didn’t help.  Did I have an astrocytoma or glioblastoma?  Was I stricken with a meningioma or a pineal tumor?  I figured that these headaches of mine were bad enough that whatever it was I had, it had to be the worst of a bad lot.  Also, it didn’t really matter ultimately, because the book stated that despite treatment only about 25 percent of people with brain tumors are still alive after two years (this was the ‘70’s by the way, I’m sure people live longer nowadays!).

Great!  Just as I was going to enter my teens, I was going to be struck down.  That meant no high school, no dances, no drinking and driving, no pre-marital sex, no nothing.  I was going to have to cram a whole lot of living in the two years I had left and I wasn’t even old enough to drive!

This news really put a damper on things.  I thought about telling my parents, but I didn’t want them to be upset.  I kept quiet about it and silently stewed; I became moody and depressed—which of course to me, signified the dreaded mental changes.  I thought that end was approaching faster than expected.  As soon as I reached my diagnosis, the symptoms just increased.  I noticed that my vision was a little blurry—hadn’t I gotten glasses just a few months ago?  I became clumsier…well, I was always clumsy, but now I was hyper-aware of my propensity to bruise easily and run into things.  Shit, I probably had this tumor since I was a baby and had gotten to live these eleven years on borrowed time.  Obviously the end had to be near.  I just hoped that my brain wouldn’t explode and leak out my ears while I was at school.  It was bad enough the time I threw up on Mr. Craig’s shoes in  fifth grade—imagine having this happen?

I started having trouble sleeping.  I was afraid that I would go to sleep one night and never wake up. My tumor was like Freddie Kruger without the striped sweater and one-liners. I would lie in bed at night, checking my pulse and counting my respirations. I would lie as still as possible to see if I could feel anything shifting in my head. Sometimes, my body would be clenched so tight that my arms and legs would start to tingle. Naturally, I thought this was the result of the tumor and not, you know, muscle-related.

After two weeks of this torture, I finally decided I needed to tell someone what was wrong with me.  I figured it would be selfish to have this knowledge and then one day keel over and leave everybody wondering what had happened.  Although I did sort of like the idea that people would think me brave.  “Oh, the poor thing, she knew all this time and kept it to herself—how courageous and selfless of her…”  Frankly, I was neither courageous nor selfless. I was scared shitless, so I decided to talk to my cousin, Michelle.

Michelle is six years older than me and she lived with us for most of my life; I idolized her. I figured if anyone could help me or at least sympathize with what I was going through, it would be her.   So one day while we were driving around in her Gremlin, I spilled the beans.  I told her about my headaches and how I looked it up in the medical book and through my brilliant powers of deduction came up with the cause:  BRAIN TUMOR.  She didn’t say anything for a couple minutes.  I’m sure digesting the tragic news and trying to imagine her life without me tagging along after her constantly.  Just as I was getting ready to tell her everything would be ok, that I would fight it and survive, she started to laugh.  I mean really laugh, not just a giggle or a chuckle, but a braying, hysterical guffawing. Like she’d just heard the funniest joke ever!

I wondered if this was just her way of dealing with the pain or if she was not-so-secretly happy that I was going to be buying the farm shortly.  This was not the reaction I was expecting or hoping for, frankly.  Disbelief, tears, prostrating herself before God…these were more in keeping with what I thought would be appropriate responses.  After she wiped her tears of…joy away, she came right out and told me I was ridiculous.  “Oh, you are such a hypochondriac; you don’t have a brain tumor!”  Well, pardon me, DOCTOR Alexander, I didn’t know you were so versed in matters of the brain.  I was miffed, to say the least, but still I asked her to not say anything to my parents, as I didn’t want them to worry.  She giggled and said she’d take it to the grave.  Poor choice of words in my opinion.

About three hours later my mom came into my room.  She wanted to talk to me.  She sat down on my bed and told me that Michelle had told her about my tumor.  She then explained that everyone in the family is plagued by headaches and that the odds of me having a tumor were very, very slim, considering I had absolutely no other symptoms.  I must add that she said most of this with a straight face, which I did appreciate.

Now one would think that all of this would’ve brought relief. After all, everyone gets headaches and apparently my family is prone to them.  Plus I didn’t have the other symptoms.  I tried telling my mom that my vision was blurry, but she just chalked that up to near-sightedness, which also runs in the family—as does the clumsiness.  So, it should’ve appeared that I was off the hook.  But, I wasn’t convinced.  I still felt sure that I had a brain tumor and that I was going to drop dead one day soon and boy, weren’t they going to feel bad when I did!   And that’s when I embraced my tumor!  Instead of fearing it, I began to nurture it.  I came to love my tumor.  It was going to prove me right after all and that was something worthy of love!  Michelle, mom, dad, my brother Scott, they were all going to feel like shit when they were standing at my casket!  “We shouldn’t have laughed at her; we should’ve taken her to the hospital right away!”  I bet Marlo Thomas would’ve believed me!  Heck, she might’ve put me in one of those commercials for St. Jude’s and I could’ve maybe met Phil Donahue!  So, I just figured I’d wait it out.  I’d lie in bed at night and picture my funeral.  The tears, flowers, hordes of people…”if only we knew…”  Yeah, well you did know and you chose to laugh. This is what you get!  I began to sleep like a baby and my mood noticeably improved. 

After a few months I began thinking less and less about my tumor.  It was still there, I’m sure, but my focus began shifting.  Starting Junior High School, boys, needing to get my first bra before school started, wondering when I was going to get my period, boys, the usual pre-teen concerns.  I would still get headaches, but my fear of them began to dissipate.  I made it all through Jr. High and High school without dropping dead.  I must have a slow-growing tumor. 

I didn’t really worry much about it again until my mid-twenties.  I started getting headaches more frequently and no amount of aspirin, ibuprofen, booze or drugs would get rid of them.  The only thing I could do was go to sleep.  Naturally, I began to start flirting with the thought of the tumor again.  This time however, I kept my thoughts to myself.  I certainly didn’t want a repeat of the laugh at Ellen’s expense show.  After a few months of this, I went to my family doctor for a check-up.  I explained to him that I’d been having these headaches and how they scared me and then I asked him if I could have a CAT scan.  You could’ve heard a pin drop.  He stared at me like I was nuts and then he laughed!  Why everyone laughs at me is a mystery to me!  I told him I had insurance, so it shouldn’t be an issue—this made him laugh even more.  He said he couldn’t justify that sort of test just because of a headache.  What the hell? What do you need to have to get a test run?  I must have looked terribly disappointed because he said he’d do some other tests just to make sure I didn’t need the scan.  He looked in my eyes, had me touch the tip of my nose, walk a straight line—it was basically a roadside sobriety test.  I guess being drunk and having a brain tumor are pretty similar.  Then he said, “You have tension headaches”.  Tension headaches?  Well of course I’m tense…I HAVE A BRAIN TUMOR!!  He gave me a prescription for a medicine called Esgic Plus—some sort of acetaminophen concentrate with a barbiturate base.  I was very excited by the barbiturate prospect, but still skeptical that tension was all that it was.  However, I started taking the pills and surprisingly enough, the headaches receded.  This was good news, but I still knew deep down, that the tumor was there and always had been.  Just ‘cause you kill the pain, it doesn’t mean that the problem is gone.

A year or two later when I was living in New York City, I was again beset by the old headache.  This time it was accompanied by dizziness and blurred vision, but by this point, I had gotten on board with everyone else.  I suffer tension headaches and all this talk of tumors was pretty funny—as far as I was concerned.  Tumors in and of themselves=not very funny at all.  I had gotten to the point of saying, “oh the old brain tumor’s acting up again…hahahahah, but this business with the dizziness and blurry vision was too much to just laugh off . I got very scared.  It was like being eleven years old all over again.  I went to the emergency room at Beth Israel hospital.  At first, when I said I’d had a headache that had lasted for 3 days, they were prepared to have me wait about eight hours, but when I mentioned the dizziness, they hustled me right on in…see they were thinking brain tumor, too!  I had a resident treat me.  He did the roadside sobriety test as well and then asked if I wore glasses.  When I said yes, he told me to get my eyes checked!  THEN, he asked how old I was and where I was from.  When I told him 32 and from Ohio, he paused.  “You know”, he said, “being a woman, your age and from the Midwest, you have a higher than average chance of having Multiple Sclerosis”. Ok, now you’re a doctor or you at least play one on TV, you pretty much come right out and tell your patient that you think they’re a paranoid nutjob (“um, do you wear glasses?  Maybe get your eyes checked, chuckle chuckle, chuckle”) and then you decide to tell this person (i.e. ME) that their odds of having MS are greater than the average bears?  You sir, are a dumbass.

So, while I still know that one day my brain is going to pop, I’ve now made some room in my repertoire for multiple sclerosis.  When this all hits me one day, it sure ain’t going to be pretty, but I’ll still be able to comfortably say to all the naysayers, “I told you so”.

Ellen Keffer is a writer.