Friday, February 16, 2007

The Tell-Tale Heart

The Truth, The Whole Truth, and Nothing But the Truth:
Ending the Lies


I used to hate Valentine's Day. Red roses gave me hives and the artificial "express your love only in these assigned commercial ways" mentality drove me nuts. The fact that I had never really been in love with someone on Valentine's Day before just intensified things.

One year, a friend of mine had even planned an Anti-Valentine's Day party where everyone would paint their fingernails black and play albums by the Cure or the Cocteau Twins. That same year was going to be different for me, though. David and I had only been officially dating for a few months, but most people assumed we'd been together forever.

It often felt that way to us, too. We had met one another at a summer camp several years before (a program for "heinously gifted" kids, as a friend of ours quips). After a brief conversation across the table in the cafeteria, we sat on a bench outside where we talked and talked and talked about everything important in our lives: our intellectual interests, our favorite authors, our family backgrounds, the importance of our brothers in our lives. We talked about our dreams, our politics, justice, social activism, God-and-no-God, etc. The conversation went on until we began to see the sun rise. Although we had just met, I felt like I knew him deep down, and better than people I had known all my life.

Although we were dating other people at the time and did not think of our intense connection as romantic, we stayed in touch over the years. When we found ourselves in the same city living around the corner from each other while I was in graduate school and David was starting medical school, we started spending every moment together--taking yoga classes, cooking, studying. After dinner we hit the books and ate pomegranates, staining all the pages with the red juice. The whole time I was staring into his eyes--mesmerizing and calming at the same time.

David knew I was skittish about Valentine's Day. When his parents called and said they'd be in town that day and wanted to meet me, he laughed a bit as he watched my nervousness skyrocket. He always says I cooked up an ingenious plan to avoid it all.

* * *

I came back from spending the holidays at home with what I thought was a sinus infection. When a course of antibiotics did not cure it, I asked David to pour over his first-year medical student books for information about how a stubborn case like this might be treated. When he looked up my symptoms, he pointed out that facial numbness is not a traditional sign of sinus infection. Without any facial paralysis to go along it, the only real diagnosis was a brain tumor. Chuckle. Ha. David must have so much left to learn in medical school....

Fourteen years ago on February 12, I headed to Student Health again, still assuming I really had a sinus infection and hoping for an antibiotics refill. Initially, the docs there had agreed with me that it was probably a sinus infection. But after this month when the facial numbness around my left eye began to spread, Student Health referred me immediately to the neurologist, telling me to go straight across the street right away. Dr. Pleasure sent me for an MRI immediately. When I emerged from the dressing room, the doctor sat in the waiting room, pizza in one hand and MRI in the other, and said, "Good news! You don't have Multiple Sclerosis. It's just a brain tumor." Everyone was surprised to discover that my tumor was actually on the right. The 7cm-plus tumor was pressing on my brainstem, smooshing the facial nerves on the left against the inside of my skull.

I spent the rest of the morning being admitted, sneaking home (a 10-minute walk) to get pajamas and lots of books to read (I was studying for comps), and calling my family. I met with lots of medical residents who asked me to remember lists ("Spruce Street, Baseball, and the Palladium"--still remember them after fourteen years...), or to touch my nose then touch their moving fingers.

* * *

As soon as David walked home from med school classes that day, he received my message on his answering machine and turned right back to come see me at the hospital. He spent the next two months there--reassuring me, comforting me, entertaining me, and making me fall ever more deeply in love with him.

I also called my parents. My mother flew up on Sunday, February 14th. Although I did not get to meet David's parents that day, he very unexpectedly got to meet one of mine.

The surgery on February 16th lasted almost 24 hours. I still think they must have ordered out for pizza and a movie. One of my friends, a 4th year medical student, caught some of the surgery on closed circuit TV. Several of my friends from the history department joined David and my mother in the waiting room off and on during the day and early evening. They all entertained her with song and silly jokes. In return she taught them how to dance the shag, the official dance of her home state. David stayed with my mother all night in the hospital waiting room, waiting for me to emerge from the operating room.

* * *

After a short stay in the ICU, I moved to the neuro floor and worked on recovery. I had the whole range of side effects. A severed 8th cranial nerve left me deaf in one ear and with impaired balance. I also had paralysis on one side of my face, wide-open dry eyes, serious nystagmus, difficulty with speech, difficulty thinking with words, difficulty reading, handwriting illegibility, difficulty walking, etc. Because of my balance adjustment, I sometimes felt like I was being dumped out of the bed and held onto the rails for dear life. Eventually I went to occupational therapy and learned to draw lines between pictures and words. I went to physical therapy and practiced walking halls with patterned floors, and then later, up and down stairs. And the nutritionist kept sending up cases of Sustacal, the most foul drink in the universe, despite the fact that I was eating just fine.

* * *

Eventually, I was given a pass to go out of the hospital: My family and friends helped me trod slowly through the snow (with a cane) to the garden show at the convention center next to the hospital. I still have the postcard I sent to my grandmother--scribbles that don't even seem to be words, with a translation filled in by my mother. It sounds like a 3-year-old composed it.

* * *

Soon, I was signing discharge papers. As I bent over to try to sign my name (a great difficulty), a drop of spinal fluid dripped from my nose onto the paper. My neurosurgeon slid the paper away from me, mumbled something about culturing it, and told me to take off my shoes and lie right back down. I spent the next few weeks getting spinal taps, a long-term tap that stayed in my back, and IV Vancomyecin for meningitis. Meanwhile my main neuro resident went bungee-jumping in Australia.

Eventually I was released with a small CSF leak that refused to heal outside the hospital. On April Fool's Day, my ENT told me I'd be coming back in for a second surgery to correct the leak. After this surgery, I had a more serious case of meningitis and more Vancomyecin. I eventually went home with a IV line in my arm, a refrigerator filled with IV antibiotics, and no remaining veins.

* * *

Before my doctors cleared me to leave town for a few days to visit my family, David and I drove down from Philadelphia to DC in his old clunker for the 1993 GLBT March, just for the day. His car was an old beater with a Fisher Price toy phone. He loved to joke that it was his car phone. I spent my birthday with hundreds of thousands of other protesters on the National Mall. It felt like a day of new wholeness and strength, for everyone there but especially for me.

I started learning American Sign Language soon after surgery, partly to help regain control of my right hand and partly to help me deal with my now-merely-decorative right ear. David began to learn Sign as well, taking classes at the Pennsylvania School for the Deaf.

* * *

Our relationship continued to grow as the months of recovery passed. When David went home for Rosh Hashanah that fall, I decided to knit him a sweater. Immediately after I attended morning services on campus, I went to my local yarn store, a below-street-level establishment around the corner from where Rosie's Yarn Cellar is today, and bought light Lopi yarn. Luckily, I did not buy straight needles (see story number 3) and was therefore able to complete the sweater in time to give it to him for Hanukkah. The Boyfriend Sweater Curse seems to have passed us by.

I eventually accepted a teaching job at Gallaudet University, a college for deaf students in Washington DC, where classes are all taught in Sign. My first book grew out of my dissertation on deafness in the 19th century South. My second book, co-written with a friend of mine and currently in press, is a biography of a deaf black man in early 20th-century North Carolina and relies on signed interviews. It could not have happened without the experiences I had due to tumor.

* * *

There are things that remind me of my surgery every day. The lack of a vestibular nerve still makes it hard to walk in the dark or on the snow and ice. I get frustrated in loud parties when I can't follow conversations. My handwriting is only barely legible. Sometimes the person cutting my hair will ask why I have a hole in my head. And I am totally amazed when two-eared people can tell from sound where they dropped a penny. Best of all, I have a funky talent of closing one eye when I pucker my lips (apparently my nerves regenerated in a less-than-typical way). I still drip (spinal fluid?) from my nose upon exertion or in hot weather, become nauseated, and get a headache. I keep a copy of an old Calvin and Hobbes cartoon strip in which Calvin sneezes and remarks "Cool, spinal fluid!"

Since my surgery, I've met many people who've had the same kind of tumor, some whose tumors were quite small and others more like mine. Seeing what kind of experiences they've had, I feel so lucky. Despite the fact that I had a very large tumor and a whole lot of immediate side effects, two years after surgery I was -- well, not at all my old self, but a new and whole human being living a new kind of life with new expectations, new limitations, and new goals.

My tumor and the surgery changed my life, in ways both difficult and very positive. In addition to deepening relationships and changing my academic interests, my experiences allowed me to understand much more about the experience of health and disability, about strength and love. Surgery took me in a new direction, one that I never expected and one that has been filled with surprises and delights. Life is not the same after something like this, but it can take you on an amazing new path.

And I've got the scar to prove it.
* * *

The winner of the drawing is Helen!

20 comments:

Martha said...

What a pleasure to know both of you. Your story is so heart wrenching and beautiful.

(And I know how to shag, too!)

SaraSkates said...

I've heard much of the story before, but you write beautifully. Though you probably knew that already ;) It's awe-striking how profound events like this are. And how resilient people are.

Margene said...

You have an amazing story, an amazing life. You transformed a 'problem' into an opportunity...into a life and your story is very uplifting!

Kathy said...

Thank you for sharing your story. It is truly amazing and your positive attitude inspires.

Francesca said...

Thank you for sharing your story with us. I hate to say that I enjoyed reading it, given the subject, but you know how to write and that's what makes a story a good read.
I am sorry you are still dealing with the effect of the tumor and surgery. At least none of that seems to be affecting your knitting. :)

hillary said...

The real story was even more incredible that the ringers. So sorry that you had to go thru that but it looks like you came out better for it. Congratulations on that.

Inky said...

That is a truly amazing story. Your posts so often move me, thank you for that.

mames said...

thank you for sharing your valentine story, it is an amazing one. i have worked as a physical therapist with people recovering from neurological events and find your account of recovery profoundly moving. i have only been witness to people like you, one that can encourage from the sidelines, but not know the real experience. i love your comment that you are now a totally new person...and once again thank you for your open sharing. happy valentine to you and yours.

Sarah said...

Wow -- I love that your doctor was so optimistic about it being "only" a brain tumor. Thanks for sharing your story, you tell it beautifully!

beadlizard said...

The Phoenix rises from the fire...

This makes me want to meet you in person even more -- a kindred spirit! --Syl

CygKnit said...
This comment has been removed by the author.
CygKnit said...

As I was trying to vote a few days ago, I was hoping that none of the scenarios were true, though of course one of them was.

Thank you for the perspective, it has given me much to think about.

P.S. Mom's from SC? After attending a wedding there a few weeks ago, I have a whole new apreciation for the shag!

LizKnits said...

thanks so much for sharing part of your life with us!!

Carrie K said...

So David was right! Wow, that's one for the books on How We Met and Fell in Love.

Knitting Bandit said...

What a beautiful love story..life story! Thanks for sharing.

Carol said...

What a story. I had a minor health complaint earlier today, I can't remember what it was. You are one remarkable woman! Only a Phil;y girl;-)

Sean said...

thank you for sharing this poignant and inspiring (and beautifully written) story. It is wonderful to read how much good you were able to find out of such a distressing (to say the very least) situation. I'm grateful I get to read about you and your family!

Lolly said...

Hannah, I was completely engaged through every word of your story - thank you first for taking the time to share it so eloquently with us on your blog. Thank you also for relating how great difficulties can be turned into opportunities.

I want to meet you one day very soon - February seems to have slipped away so quickly...

Best wishes, and thank you again for sharing.

tiennie said...

I have to agree with everyone - beautiful story!!!

Birdsong said...

I am so glad that you decided to put up the whole story.. .what an odyssey!

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