Wednesday, February 16, 2011

The Whole Story

A follow up to Two Lies and a Truth:

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 while we were both teaching 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....

Eighteen 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 eighteen 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, 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 the 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 that came out while I was in the hospital:


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.

17 comments:

  1. Wow. You could write a book about *this*.

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  2. Wow that's an amazing story. I agree with Kathy above.

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  3. Thank you for sharing this experience with all of us who read your blog.

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  4. Not to sound too repetitive to the above comments but...wow. This is quite a story & I agree that you could write a book about it. Thanks for your willingness to share something so personal.

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  5. What a story. Thank you so much for sharing.

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  6. Amazing story. Isn't it interesting how much strength is born of trials? That being said, don't you sometimes wish you didn't have to be quite so strong?

    Your perspective is amazing and I'm certain that your sense of humor has helped tremendously. I admire your courage and candor.

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  7. I'm speechless. But happy for you.

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  8. As others have said, simply amazing and so artfully well-told. I guess you truly never know where life's turns will lead.

    And, I should have realized that you'd more likely be knitting a sweater with circular needles vs. straight. (Rookie mistake!)

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  9. I echo all the other commenters. Not only is this a tremendous experience, but you wrote about it in an amazing way. Thank you for sharing this with us.

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  10. You've been so brave through all these terrible things! I'm glad you have David and a loving family. Thank you for sharing your story. Taken all in all, it's actually more romantic than my own choice, option 1!

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  11. What a story! Amazing, as so many others have already said. Being deaf myself (but since birth), I'm fascinated by how your experience caused yourself to be part of deaf culture. I'd love to know the titles of your already-published works so I can look them up!

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  12. Hey, nice blog. I'll bite. Consider hazarding a look at my blog. http://sesquipedaedalus.blogspot.com/

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  13. What an amazing story and experience - thanks for writing it up. And your dynamic with David seems so lovely. :-)

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  14. So do you look forward to Valentine's now? Do you think of it as Valentine's or the anniversary of your trip into all this experience?

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  15. I feel quite humbled reading this post.I have chronic fatigue syndrome, but have never yet truly come to terms with what has happened to me, or accepted the changes it has made to my life. I will remember your story now, to give me courage when life becomes a bit of a trial.

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  16. what an amazing story! I echo the other commenters in saying you have written about it wonderfully.

    And now David can always say "I told you so." As in "remember that time I told you you had a brain tumor and you didn't believe me?"

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  17. This is unbelievable. I know everyone has said it, but you have such an amazing story. I'm so glad you took the time to share it.

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