I find that I'm emotionally labile here lately. For the last few days I've felt physically really good--just like myself in terms of energy level, appetite, ability to speak, balance, etc--things that were considerably off in the days following the seizures. And yet I'll be going along through my day, and I'll hit a bleak patch. Often it takes the form of an internal narrative like this: "Okay, what loose ends do I need to tie up in the next couple of weeks, since I'm not going to be able to have any conversations for a while after the surgery? Wait, what if I'm not able to have any conversations ever again after the surgery? What conversations do I need to have if these are my last two weeks as myself?"
As I've been telling everyone, the prognosis is good. It's good, good, good. Of all the many things I'm worried about, the level of medical care I'll be receiving isn't one of them. I have a fabulous medical team. I have a non-cancerous tumor. There are many reasons to be hopeful. I'm putting the brave face forward, and people are believing it. And often I'm believing it--I often feel hopeful and happy and brave.
But then when people say things like, "Oh, well, I'm glad everything's going to be fine," part of me rails up. This tumor is in the language center of my brain. Four centimeters in the language center of my brain. The neurosurgeon has said he's pretty sure they won't be able to get all of it out, because to do so would do serious damage to my language abilities. And are there many things more important to me than my language abilities? It's second only to mortality. Both of these are at risk in this surgery. The surgeon will have to be weighing how much of the tumor to remove vs. how much to threaten my language skills. How many years of my life am I willing to give up in order to maintain my ability to read and think, to talk to my daughter, to write books, to do my job? This isn't a calculus I want to have to be doing. There's no way to answer that question that isn't completely, utterly shitty.
So I'm emotionally labile. The neurosurgeon has said that he thinks it's therapeutically useful to be optimistic, to have a positive attitude, and I'm trying. But some of the time I'm just enraged that I have a fucking brain tumor.
10 years ago
21 comments:
I've been checking in constantly to see if word was back about it being cancerous or not. (Glad to hear...) But anger is what I've felt too, in my own life, at the deaths of my loved ones. I understand school shootings and copy-cat suicides now. I'm sort of amazed more people aren't walking around actively enraged that we don't get what we thought we were promised. Of course, I don't know who made us these promises or where our expectations come from.
Ugh, sorry that last comment probably isn't good to publish, I just think the anger makes sense, a lot of sense, and I'm sorry you've gotten such a raw deal. :)
love, your fan
I think you're being very brave. It must be utterly terrifying. I agree though that it isn't healthy to give in to the terror. Like Walter says, hopefully this will just be another adventure, another chapter in your memoirs. But while fear isn't productive, anger might be. It will keep you fighting.
Who wouldn't be a bit enraged by being hit with such a thing? We all like to think the universe is generally more benevolent than it sometimes proves to be. But since your language skills are considerably higher functioning than most people's to begin with, I'm betting you'll pull through this without even slowing down. (And if you do slow down a little, people will just think you're an unusually fast talker for someone who lives this far south of Mason & Dixon.)
Great news about the WGS major! Thanks for sending out that e-mail.
All the best,
Richard
My mom had brain surgery when I was 19. We bought wedding china together before the surgery. I wasn't even engaged, but she wanted to make sure she did something wedding related with me. She is okay, but that china still means a lot to me.
I think the bravest thing about you is your willingness to share the full range of your experience with this - the hopeful, frightened, and outraged. And maybe the lesson isn't for you, but for someone who gets to witness this kind of courage and finds a way to use it to save their life, too.
I would worry about you if you weren't feeling the whole spectrum of emotions! It's all true... all at the same time. Thank you for opening up and showing your beautiful heart.
(FWIW, Jill Bolte Taylor's book, "My Stroke of Insight" has some wonderful tips for friends/family of those with impaired communication during physical recovery.)
love, love, love,
tammy
Alison
You rock and you have great friends.
You have always had an "in your face" courage. You do have a great attitude but it's good to vent.
After you get through this, one evening you're going to find yourself sitting on your front porch in the early spring. Walter is making crashing noises in his work shop, the Wean Bean is walking over to chew on Bobo's ear and you're contemplating your fifth book. As I said, I think the last sentence in this blog would be a great title.
The Dad
I was at Flossie's last night after talking to you. I remembered a conversation I had had with Walter one morning while you were here. Something was said about this being one of those experiences you think will never happen to someone you love - or even someone you know. Then I got to thinking and said something like, "Yea - and like someone losing their arm!" We went on to think of several things that have happened in this family that seem "unreal". I was telling Flossie about this conversation last night, and her remark was, "Look at how your mother's attitude about losing her arm was a model for the rest of your family when presented with an extreme challenge." Wow. I had never looked at it like that. She did set the bar kinda high, but you've risen to the challenge again and again.
Love to all of you,
Mom
You have every right to all of these feelings. You can be hopeful and happy and brave and optimistic AND you can be enraged and feel betrayed and fear the possible outcomes as well as the unknown. The important thing, therapeutically, is to don't give in completely to the bleakness (how could you with Walter and Maybelle!). I, also, think the last sentence would make a great book title! Hang in there!
Alison -
I'm glad you were able to be honest about how you really are feeling. I believe you have a right to all of your feelings and you don't have to apologize. I'd be more concerned if you shoved all of them down and pasted a smile on your face.
My personal belief is that courage is naming the feelings, experiencing and walking through them.
I wish I could wave a magic wand and make the tumor go away - and say, "Get away from Alison's language center." That damn tumor!
But for now - I'm happy to be a witness, to be in the space where you can be real.
Hugs.
I am a new reader, but I can say that I am rooting for you. And I totally understand being enraged about the brain tumor.
I'm GLAD you're allowing yourself to feel the rage that you deserve to feel. A co-worker's sister had an 8cm tumor that was removed, and she was talking through and after the surgery just fine. I don't know where her tumore was exactly in her brain, but sheesh, it was 8cm! I love you!
Honestly, I'd be scared and angry too (fighting mad!), regardless of the prognosis. I agree with Robin about not giving into the fear, but the anger and your tenacity, directed, can be a positive thing....that, and you have an inner strength no damn tumor can take out (!!!). Fight back! I recognize a survivor when I see one (:
And how many people can use words like labile either with or without this? I had to stop and look it up. Smarmy as it sounds, when I was going through a very tough time myself, I learned that some of those silly sayings that people toss around have some merit. What doesn't kill you really does make you stronger ... and you really do stop and smell -- and appreciate -- the flowers a whole lot more after something like this.
Monday's soup is Chicken Tortilla. Be on the look out for yours.
Sure, you have fear and anger...and who wouldn't? Beyond that, though, you have voice. And you're sharing it here, helping anyone reading this cope with fear and anger. We value your deployment of language, Alison. It reflects your strength, which makes me confident that you will continue to share that strength with us for a long time.
stop beating yourself up over your emotions. they're just there. have them.
prayers and a peaceful heart today,
c
Alison,
I think we're all angry at the tumor for you, too. We're looking forward to all you have to say after the surgery. You have positively exceeded expectations in all that you've done so far in life. I think your recovery from the surgery will be no different.
Love from Boston,
Mel & Arthur
I hear you. I wish there were a way to convey "holy shit" and sincere reassurance and confidence that it will be OK. Thinking of you.
snooks--i am as the Quakers say "holding you in the light." and when you feel really blue, think about the worst NWSA board meeting and that will have to cheer you up. i'm not entirely joking.
Dear Alison and Walter,
Thank you for sharing everything that you do with other people. Anna, Kurt, and I and the Honors community here are all behind you. Please add me to your anything-I-can-do-on-the-Cookeville-front list of supporters. With tons of love and admiration,
Rita Barnes
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