Thursday, December 18, 2008

Blue ribbons

A week before my college graduation, a member of my senior class, a girl I had never met, had a stroke while writing her final college paper, alone in her dorm room. Nobody found her for several hours. The local hospital she was first taken to was unable to diagnose her--unsurprising, given that strokes are very rare in young, healthy people. By the time the blood clot in her brain stem was found at a second, larger hospital, her brain had been deprived of oxygen for many hours. It was thought that she was in a permanent vegetative state. Now, nearly three years later and thanks mostly to her mother's tireless advocacy and some excellent doctors, it is known that she has at least a moderate level of consciousness, but is, at least for now, unable to talk or move or function on her own. Sometimes she can move her left eye up and down to answer yes-or-no questions, but not always.

I think of this woman, whose life touched mine so briefly and indirectly, quite frequently. Many of us do. There is so much sadness and also so much hope. So many questions.

Her mother. Her father. The rage. The impotence. The hoping against hope. The being right against doctors' advice to take her off life support and let her die. The knowing that she's locked in and not being able to do anything about it. The time and money that everything takes. The fact that you have to go on with the rest of your life despite it all. There is so much excitement some days, so much hope with the new technologies, the possibilities of controlling a computer with your thoughts, so many directions this could go in, so many ways that new avenues could open up for her. And yet it's all so slow, and no matter what, none of these things will do what you want more than anything, which is to return her to the happy, healthy, energetic woman that she was before.

The frustration for her, of being locked in. She can't open her eyes, but when someone else opens them for her, she can see. She knows that she had a stroke and she is aware of what's going on around her, even at times when she does not appear to be alert. And also, beyond frustration, boredom. She must be bored. Her family and friends make an incredible effort to bring her out and about, but they can't do so all the time, and she isn't strong enough for that anyway. And thus she spends a lot of time in a hospital bed, knowing what's going on but not able to participate. Or even stretch.

The boyfriend. Young, also in college, and having been together for years. Wanting to make a life together. What do you do? Do you stay committed to her, hoping that someday you'll be able to have some kind of life together? Do you give up the hopes and dreams that you had for yourself of a simple relationship with a healthy person, of kids and a back-and-forth dynamic? How do you get over the person you want to spend your life with, knowing they're alive but not accessible?

The way you leave things when something happens so suddenly. The fact that it could have been any of us. The boxes, the dorm room that someone else would have to pack up. The last thing that you wrote on your Facebook profile (in her case, "I'm feeling better about school now. I still am excited about graduating, but I think I'm really going to enjoy this year now that I've made some changes schedule wise").

The heartbreaking mundanity, because there are no final words, no big gestures because you don't know it's going to happen, you're young and healthy and graduating and the world is your oyster, the future is sparkling before you. And so you continue with a series of tiny gestures, little regular day-to-day things like everyone else, and then suddenly everything freezes, and that's the impression that the rest of the world has of you forever. And so the little things take on a sudden poignancy that they never had before.

I've never met her. I know very little about her. Although our college was not that large and I felt that I knew most people in my class, Facebook says we have only two friends in common. And yet, I and everyone else in our class wore a small blue ribbon on our gowns on graduation day.


Little blue ribbons, more than 800 tiny drops in what has become, for her and those who know and love and care for her, a vast and frightening sea.

35 comments:

  1. This is an amazing post, Jess. Thank you so much for sharing this story and reminding us how precious life is.

    ReplyDelete
  2. What a heartbreaking and frustrating set of circumstances for everybody involved! And yet the amount of hope that her family must have at times must be astounding.

    ReplyDelete
  3. Have you ever read "The Dive From Clausen's Pier" by Ann Packer? That is my absolute favorite book and it is about a similar topic.

    ReplyDelete
  4. This comment has been removed by the author.

    ReplyDelete
  5. Wow, what a story. Life is so precious. Thank you for sharing!

    ReplyDelete
  6. Oh my God, how sad. Yet such a good reminder of how brief and fleeting life is. I'm so thankful that I hugged and kissed my husband and kids before I left home this morning.

    ReplyDelete
  7. What a heartbreaking story. You told it beautifully.

    ReplyDelete
  8. Very beautifully told, and very frightening. Thank you for sharing this.

    ReplyDelete
  9. Wow. It's hard to think of anything else to say.

    ReplyDelete
  10. I can't imagine what it must feel like for her family, her boyfriend, her friends. There's this state of inertia, where you can't move forward and you can't go back. It's heartbreaking.

    How did you find out that she's able to see now?

    ReplyDelete
  11. Wow, Jess. What a great reminder to live every day to the fullest.

    ReplyDelete
  12. As always, a well-worded tribute. Which hits close to home, since my neighbors brought their little boy home yesterday. The little boy with the stigma of moderate brain damage. Yet, when we walked into their home. And were welcomed by their family. And met the little, sleeping baby. And saw the very proud, happy couple who are thrilled to be parents. That stigma instantly melted away. It was an amazing moment.

    ReplyDelete
  13. I have goosebumps all over...this is a great post.

    xox

    ReplyDelete
  14. wow, that's sad. I'm not sure what I would do if I was a parent of that girl. As an adult, I've made that legal choice not to live like that, but being that she was so young, that discussion probably never happened. very sad.

    ReplyDelete
  15. that is just so scary. I can't imagine what any of them could be going through. I imagine that in her mind she's fine (you know, like when you're old and you still feel young) but she can't act out on what she wants. It's very sad.

    ReplyDelete
  16. Wow...quite a story and you've told it beautifully.

    ReplyDelete
  17. This is such a sad yet hopeful story. It's scary to think that you never know what can happen, and how it can drastically change your life and the lives of those around you.

    ReplyDelete
  18. My reader is thoroughly overflowing. Normally, when this happens, I end up having to read only the newest piece written by each blogger. But after reading this one of yours, I kept going and going to read each one. You're writing is captivating & this story is amazing.

    ReplyDelete
  19. I'm so glad that her parents are strong enough to advocate for her. I don't think I would be able to handle the horror of doing and saying nothing about her cognizance, only to find out later that it should have been done or prevented.

    ReplyDelete
  20. This post gave me goosebumps. So beautifully written. If you ever write a book, I'd definitely buy it.

    ReplyDelete
  21. Oh my god. Just when the rest of this girl's life was about to start, too. How heartbreaking for all involved. Makes me shut up about having to clean up vomit this morning. What do I have to really complain about? Not a damn thing in comparison.

    ReplyDelete
  22. Oh, that is so crazy and awful. Also - I'm with Kristen, your third commenter here - I thought about the Dive from Clausen's Pier, too! I'm happy to hear I'm (finally) not the only person who loved that book as so many of my friends didn't.

    ReplyDelete
  23. i had a friend in college who died very suddenly, and very young. it was horrible, obviously, but at least it was certain and final, you know? it's so much harder when there's the lingering hope, i think. and when you know the person is still trapped inside, but unable to do anything about it.

    ReplyDelete
  24. This is a really, really moving, insightful post about issues a lot of us have a hard time articulating, let alone understanding. It seems like you're just working through your own feelings on the topic, but you do it in a way that's really helpful and thought-provoking for the rest of us. Thanks for thinking this through for me; I'll have a lot to consider now as a result.

    ReplyDelete
  25. This was a terrible, touching post. What an awful thing to happen. Your words have brought eloquence to an ugly situation - a reminder that life is precious and fleeting.

    ReplyDelete
  26. Oh my that is just terrible. I saw the Diving Bell and the Butterfly and it was about a similar occurrence, "locked in syndrome." Just a shame. I'll let you know, like I let everyone know, all the hope I will ever have for this girl, but if I were ever in the same position, just let me go. Really makes me remember that I've been meaning to write a living will.

    ReplyDelete
  27. Yikes. That is such a sad and terrifying story. I can't even imagine what it's like for her or anyone around her. I hope I never have to find out.

    ReplyDelete
  28. "The being right against doctors' advice to take her off life support and let her die. The knowing that she's locked in and not being able to do anything about it."

    Don't you think it's weird that you put those two sentences together? If something similar happened to me, I would hope my loved ones wouldn't be so selfish as to leave me on life support for years.

    ReplyDelete
  29. I love the solidarity shown on graduation day.

    That poor woman is living one of my worst nightmares. Her family? They have another one.

    ReplyDelete
  30. Wow. What a terrible event for this woman and her family.

    My truthful reaction is that I would have rather died. But I'm a control freak, and this scenario for me is literally a nightmare.

    This is why living wills are so important; everyone has different ideas regarding right-to-life situations. It's scary, but I'm going to look into writing one in the next couple of days.

    ReplyDelete
  31. how awful! what an amazing gesture by your grad class on her part.

    ReplyDelete
  32. That's so sad-- one of my biggest fears is having one of my family members die suddenly from something like this.

    ReplyDelete