Thursday, December 11, 2008

A story

Boston is known for a lot of things. Colonial and Revolutionary War History, Irish and Italian immigrants, scrod and clam chowder (by the way, Manhattanites, chowder is NOT a tomato-based soup!). It is also known for its modern industries: financial services, high tech and biotech. Cold weather, Yankee sensibilities, Brahmins, Cabots, Winthrops, Ayers, Harrimans, Saltenstahls, Forbes and Kennedys.

More than anything, though, Boston is probably known for its Universities and its Hospitals. People come from all over the world to research, study and live. And people come from all over the world to be treated.

This is a story about The Brain Surgeon. And it is a story about one of his patients, a (now) 17 year old girl from very far away who came to Boston four years ago. I am going to call her Lily (because I want to!). She came because she was suffering from severe, crippling headaches, and her brain scans and other tests revealed a totally inexplicable brain condition. Her local doctors were unable to help her, and referred her to a specialist in Boston. That specialist happens to have a very close associate that is married to my favorite Big Sister:-)

So, since age 13, Lily has basically spent half of her time in a hospital in Boston, away from her friends and her family and in a horribly scary situation where the very best doctors in the world told her "We have no idea what is wrong, and we have no idea how to treat it." As time has passed, they have figured out little bits and pieces of what is wrong, and have made little bits and pieces of progress in treating it. Early on, they figured out how to minimize her physical pain and at times they slowed the deterioration of her brain.

Every doctor who ever met Lily speaks of her inimitable spirit. She never cried once. Not ONCE. She never complained about anything. She thanked every doctor and nurse after every single meeting she had with any of them. She constantly brought little cards and presents to other patients that were having bad days. She wrote a card to Big Sis and The Brain Surgeon for their wedding that would make you bawl uncontrollably. She came to terms with her own mortality a long time ago, but she never stopped trying to live.

Lily's doctors and nurses became very attached to her. In addition to their great empathy, they just plain like her. She just makes people happy to be around her. Doctors and nurses regularly brought her to their homes for dinner, or for holidays when she couldn't get home. To baseball games and to the beach and even (in the case of the son of her primary doctor) to their junior proms:-). She had Christmas dinner with us two years ago, and Thanksgiving just two weeks ago.

During that Thanksgiving dinner, it was clear that she had lost a lot of her spark. She seemed smaller and weaker. She still had the same electric smile she always had, and her infectious giggle surfaced a couple of times...but it was obvious that her health was failing her. What started in her brain had spread throughout her body and she couldn't fight it much longer.

Lily died yesterday. She simply couldn't fight anymore. Her family was never able to spend much time with her in Boston, certainly not as much as I am sure they hoped, but they were all by her side for her last days. I see the way that she touched the hearts of all of the people that worked with her, and I can't imagine the loss that her family feels today. Or the helplessness that they have felt for the last four years.

Doctors don't cry over patients very much. It is a job that comes with a certain amount of built-in tragedy, and the emotional distance is a necessary tool of the job. But this one seems to be a little bit different. The Brain Surgeon has been very affected by this, more than I have ever seen him with another patient, and I have to imagine that all of the other doctors and nurses feel the same. I don't think that this is someone that they will forget very soon.

Lily may have never cried once during her entire treatment. But her doctors cried a lot when she died.

13 comments:

big sis said...

Oh, you whore. You can not make me read this at work!!!

dawn said...

This is heartbreaking for everyone involved. I'm so sorry for your loss. "Lily" sounds like a very special person to have had in all your lives.

Lpeg said...

That is so sad, I'm crying, at work.

Nicole said...

That is such a sad story! My heart goes out to all the people who knew her. :(

Ally said...

What a sweet and sad story....I'm glad Lily had a home away from home with the doctors, nurses, and other patients--and was obviously able to make a positive impact on those around her.

And you're a great story writer even thought it is sad.

Nilsa said...

This hits close to home as my neighbors have a newborn and just learned he has brain damage. Life is so damn precious. What's amazing is no matter what you look like on the outside or what's happening on your body's inside, there are still ways to see that life is beautiful.

Jamie said...

This poor sweet girl. She was so lucky to have you all in her short life. A spirit like hers is something we can all only hope to strive for.

HappyascanB said...

What an amazing story. Thanks for sharing. . . .

anne said...

And now you are making me cry...seems like a story out of an after school special.

A said...

Thanks for sharing. I needed a bit of perspective today. XO

Still just me said...

It sounds like this young woman's life was not in vain. She touched so many people, and this morning, she touched mine, through you.

Thank you for sharing this girl's story with us. I am deeply touched. I am crying for her, and for the caregivers who gave their hearts and souls.

Little Miss Obsessive said...

What an amazing story... she sounds like a very special girl who touched many lives in the short time she here. Thank you for sharing even though I think I need a tissue now!

Rachel H. said...

I missed this post! I'm so sad reading it...