Jill Bolte Taylor & me: we're like THIS
November 14, 2009Sup Internet! Sarah’s brain here. Feeling shitty after a loooong bout with anti-parasite medication and steroids. What up y’all?
Just kidding, it’s not really my brain talking, it’s just me (my brain doesn’t get talking rights anymore, stupid thing doesn’t even work). I don’t want to make this sound too dramatic, but Prednisone? Horrible steroid, makes people go completely insane. I know this because I’m one of those people. For example: I had a tantrum, directed at my own mother, in the street. A street with a lot of people walking around and noticing. A tantrum. You think to yourself, “oh haha, she’s just calling it a tantrum but that only happens with babies and toddlers”…. I. HAD. A. TANTRUM. I actually had several if we’re keeping track. I was only on the Prednisone to combat the Albendazole I was taking in an attempt to kill my parasitic tumors, so… you know. It just felt unfair overall.
Today was my last day on Prednisone (I had to spend five days tapering off because apparently just stopping cold turkey would make me devour a birdhouse and then cry about it and then maybe punch an elderly person), and I couldn’t be happier. I hope I never have to take that drug again. It gave me equal parts mania, despair, confusion, hunger, nausea, and a lot of tears. The kind of situation where you can tell yourself that it’s the drugs, it’s not you, but the thoughts in your head are still there and cannot quite be ignored. Scary. A lot of friends and strangers have come forward with their own Prednisone stories… people take it for asthma, lupus, all sorts of things. Sounds like some people tolerate it pretty well, and others don’t.
Real quick for anyone wondering, I have yet another MRI on Monday morning to see how things look upstairs after this whole radiation/steroid treatment, and if my tumors are 1) smaller, 2) unchanged, or 3) worse. I’ll let you know either way. I think I said a few weeks ago that I didn’t want my blog to become a wasteland of medical details, but hey. At least I’ve got something meaningful to write about. And it makes me feel better to share all of this with all of you, so I’ll keep at it, and you can stay along for the ride as long as you like, until you start vomiting (and you will eventually, I assure you).
I did something sort of weird today, and against my better judgement I’m going to share it with you. If it seems narcissistic or crazy or otherwise just really bizarre and unnecessary, could you do me a favor and just chalk it up to me being a narcissistic, crazy, bizarre, and unnecessary person who is on way too much medication and may not be thinking completely lucidly? Thanks in advance.
So. I watched a particular TED talk at the insistence of a dear friend who knew I would get a lot out of it. He kept insisting that I watch, hammering it home, annoying me about it even, because he knows me and knows that people are always sending me links to “world’s most amazing video” and often times I just don’t get to it. You know how that goes. You say you’ll watch “world’s most amazing video”, but you end up not ever getting around to it, and it doesn’t matter because there’s this other video you did watch involving a cat who eats with chopsticks and SOMETIMES WE JUST HAVE TO CHOOSE WHAT TO DO WITH OUR TIME, AMIRITE?
This is the video I watched: a speech by a crazy smart brain scientist named Jill Bolte Taylor who had a very unique experience that is not at all the same experience that I had, but that still spoke to me in ways that would never have been possible before I had a seizure and realized how fragile our brains (and our lives) actually are.
So, this friend I told you about? The one who knows me well enough to know that maybe I wouldn’t watch this amazing video because I might get caught up in, I don’t know, registering for Gowalla or some stupid shit like that (no offense to Gowalla, really, but I did actually register for that today)? I wanted to prove to him that I did indeed watch the dumb video he sent, and because we’re Internet nerds who do things like save chat logs to prove each other wrong and take screen shots of websites that have errors and laugh and feel superior and such, I decided to record myself watching the video to send to him later so he’d have proof that I really did watch.
Here is that video. The first couple minutes are cut off, but maybe you’re really creative or stoned and want to try to match up the video above with my reaction video? If neither, don’t worry, I captured the audio which I think captures the essence of what I’m trying to convey.
I was very moved by this woman, this stranger, this person who I could have never heard of or seen or known existed and been totally fine. Totally fine meaning possibly dying of a brain tumor, but you get my drift. But I think it’s worth it, and as I’ve had a lot of downtime lately and been experimenting more with video and life and the organicness (is that a word?) of it all, I just feel like I’m ok sharing my actual experience with you, here, now.
Not ok? Narcissistic/crazy/bizarre/unnecessary? Well then forgive me Father, for I am drugged. It has been 33 years since my last confession.
Reader Comments (82)
so the video of you crying and stuff....we really believed that you did watch it...but those steroids fucking rock! you got a living thing in your head!
Random hug from a stranger (and a podcast listener)
that video is really inspiring! i hope you get better soon Sarah!!
You are an amazing, creative, talented young woman Sarah Lane. This world is a better place because of you.
Thank you for sharing this. I suffered a major brain trauma many years ago, giving me a stroke, paralysis, memory loss and personality changes. After 3 brain surgeries, I have recovered from most of the symptoms. Except for a weakness on my right side. I also get to enjoy deep emotional reactions to simple live performances on TV. I try to fight it as much as I can, but I get choked up and overly emotional when seeing many singers and dancers on TV. I also laugh at inappropriate things. All this makes me who I am today.
Wow Sarah, you sure have been through a lot and I admire your bravery. Keep the faith that things will get better.
the power of video connecting people. i really admire you and your amazing bravery and perspective on all this.
Love you Sarah! Thank you for sharing this with us. I was crying along with you. You are perfect. ((((hug)))) :)
Just an amazing woman you are Ms. Lane.
Sarah: wow. I've been following/watching you since the screen savers days and i've always enjoyed your geeky/techy commentary. Reading your updates and see what's happening really makes me wish I could do something, even just be a friend. I told my girlfriend what you were going through and she gasped and couldn't believe it. We're both rooting for you, and I'm also in the Bay Area, and although I wouldn't expect to hear from you, you have my email from this post and we'd help out any way we can if needed. We're strangers yes, but don't have to be. Take care the best way you know how knowing you have strangers worried for you.
Brad
You are an amazing woman Sarah! We are with you in your journey and are glad to be there sharing it with you. You are the best.
Sarah,
I thought Jill's points were quite interesting, moving and profound. To question ones being and connection, direct or indirect, with the rest of the world. Both physical and intellectual.
You yourself have been through a lot with your own illness. I'm sure this brought out some deep emotions. Good luck.
I think I'll have to pass this one along.
Thanks.
I happen to be a similarly Narcissistic/crazy/bizarre person, who not only appreciates you sharing such a display of emotion with us, but also understands your need to do so. The amount of courage and humility it takes for that level of transparency is admirable. We love you Sarah. =]
Best of luck, Ms. Lane. I'm checking here daily despite having you in my RSS Reader. I hope you know you have a lot of people beyond those you know who care about your well-being. Get well as soon as possible.
I have never cried so much in my life. I'm having a hard time typing this and an even harder time speaking right now. You began brightening my day when I first saw you on Attack of the Show. Then you allowed me to travel around the world with you from my computer. And now you make me laugh every friday at 5pm (EST). You have lived life, you have been loved, and you have loved.
Thank you for sharing.
It's not crazy at all. I used to be fairly well known on the internet for this shock radio show I did. I had a bit of a breakdown in early 2008, and ended up attempting therapy for the first time. I recorded them all, and released my sessions on the internet for everyone to hear -- despite my family and friends objections.
The feedback I received was overwhelmingly positive. I reconnected with old friends, and made new ones. I also received countless emails and IM's from people with similar stories, thanking me for my openness and honesty.
You are doing the same thing. Helping people ... and helping yourself.
I watched you on TechTV for years. You seem like a kind person. I wish you well.
Let it be known that you are perfect, whole and beautiful. And you have a ton of emotional support from “us” listeners/viewers.
Thank you for introducing me to that speech. I felt inspired and almost touched by watching it.
Thank you for sharing your experience with me. I found the speech to be very emotional. With what is happening to you I fully understand how it must mean something big to you.
Thank you to Sam, Lucy and all your other cats. They seem to make you very happy, I am sure you are relying on them a lot for emotional support
Finally, thank you for being so brave. Nothing I have ever done compares to what you are going through. Your strength during these trying times is an inspiration to me. All of my hope and best wishes are with you.
That was the single most inspiring moment in my day today, the combination of the video you watched and your reaction to it, and I want to thank you for sharing something so thought-provoking and deeply personal.
Sarah, I've been a fan of yours since the TSS on TechTV days, and hopefully you'll recognize my screen name as somebody who's occasionally interacted with you.
You've got a lot going for you... you are a great TV personality and yes, there are a lot of us who will follow to anything you point us at. You've been finding great websites and such since TSS, and there are a lot of people who trust you to keep doing so.
Yeah, thinking of something bad like this is something that's not fun, but it's important we do know what's going on with you... there's a lot of people who will miss you when you're gone or worse yet unable to perform but still alive, no matter how it happens.
Be strong, you've gone through a lot. Your fan base is here to watch whatever you want to share with us.
Wonderful video. Thank you for sharing it with us.
Always,
Jeff
you made me cry. Twice. You are loved. also; watched with kitty on my lap too. Pets rock.
Just watched that video with ya... You are an awesome woman, Sarah... Hang in there hun---- YOU WILL get through this.
Peace and Love,
Will
4:25 is my favorite part...though your kitty doesn't seem to share the same sentiment, it was clear you just wanted to hug something. Good luck on Monday! We're all rooting for you to show those tumors what's what...
Beautiful!
My little Lane! Stay strong!! I'm right down the street if you need anything.
Thank you for sharing an intimate moment of your life with us strangers. Get Well. Be loved, and love.
Sarah, I've been following your work since a couple of years ago and I was shocked to find out what happened to you when I was reading your wikipedia page. I hope you get well soon! it's was a really inspiring video and our minds are truly fragile.
You've got lot's of people supporting you and you'll be well soon. The Brain makes us amazing because we can do all we do. Thanks for sharing!
And add another hug from me, to the collection of hugs you'll receive from all the people that know you and that you've inspired and made laugh with your work.
Loved the video. Many hugs from Sherman Oaks, CA. Hope you get better soon.
The strength you have Sarah inspires me. I wish you nothing but good thoughts. You are a strong lady.
Very moving... For you, and us.
Both of those videos are so intimate. Thank you for posting the first and having the bravery to post the second. Every moment we are aware that we are a part of the world and connected to one another but too often we talk ourselves out of that awareness. You and Jill Bolte Taylor reminded me of that awareness in myself. Though I cried in sympathy to yours and Jills troubles I am better for being reminded and for feeling the connection.
I'm glad you were able to get off of the Prednisone. My father was on if for most of his life due to asthma and it did serious damage. Good luck with the MRI. *Hugs*
Sarah, thank you for sharing.
Sarah what a beautiful and intimate view into who you are... Is this the person you share with people every day? I do hope so.
Jeff
I know that their are no adequate words to express how much i feel for you and admire your strength. I hope with all I have that you get better and you will. My mother made it through her stroke and so will you. beast wishes
Stay strong Sarah, we all love you :)
I've been out of the loop for a while (hopefully my iPhone will now remedy that...), but I am heartbroken to hear of your problem. I don't know what to say, and there might be nothing to say. But you seem to handle it and there are a lot of people who love you. I love you! As a guy who've had his fair share of shitty stuff happening throughout his life I tell you hang in there, we all pray for you! (Any preference as to to what god/gods?)
I hope you get well, and if you're ever visiting southern Sweden (Skåne), give me a ring and I'll buy you a drink! (I mean it!)
Me luvs me some Sarah! Thanks for letting all your emotions show. It just tells me that you are a human being. You hang in there. I will send all my positive energy streaming straight at you. Go, go, streaming energy! Now!
I'm nearly 40 comments down, so who knows if you read this or not, but I just wanted to say that you're an amazing person. We can tell. Most of us don't know you, at least not really know you, but we can tell. You're a beautiful person inside and out. Your video was raw, powerful and moving. Just as you were moved by someone you didn't know, so has your story and your bravery and charm and that cute smile, moved us.
Be strong. Lots of people you've never met and perhaps never will, care a great deal for you and wish you the best.
Truly.
- Newt
Praying for you, Sarah!
Peace and Grace
Bryan
Ya know, we could have ended WWII 6 months earlier if we had just emailed the Japanese emperor videos of a lady crying with dignity. Mere mortals wither when faced with such power. Human... emotions... surfacing... damn you, damn you all to heck. Thoughts have been with you.
Even with you putting your emotions on such public display, the mental image of you throwing a tantrum were still able to make me laugh.
I'm trying to send good vibes your way ahead of you MRI on Monday. Ni ceart go cur le cheile (There is no strength without unity).
Good luck, God bless, smile, and most important remember to laugh.
You are an amazing woman. Thank you for sharing your life with the world. I hope you find Nirvana.
Sarah, you can't imagine how many hearts and souls you have touched, in ways profound and profane. You are wise, witty and wonderful. (Love you on TWiT)
Thank you for sharing, thank you for inspiring, thank you for being. The universe sends hugs.
Sara,
I went for a stress test on my 50th birthday at 10 am in the morning. By 5PM that afternoon I was in surgery getting a triple bypass that i had not planned on getting that morning. There are many events that affect our lives. I believe these physical challenges that we have make us appreciate life more! Positive thoughts always! You are a beautiful and smart girl with many good things ahead of you. You will just enjoy the journey more now. May I suggest you listen to Joe Diffie's "Ships that don't come in". We have something in common, as Joe sings "God made life a gamble, but we're still in the game". Good Luck and God Bless!
The thing about stuff is that it happens to good people. You get scared, you get worried, and just when you think you have a grip on it you lose control. That is frightening. But we are stronger than we imagine. We put one foot in front of the other and we move forward. Sometimes we get shoved back, but we grit our teeth and move forward. We have evolved because we do not quit. We struggle against adversity, we overcome, and we go on. One step at a time. People can be supportive, can hold your hand, or point to what you need to do next, but it is you who takes the step. It will be you that fights through. Ms Taylor spoke of sudden dissociation, and very little of the eight years it took to overcome her setback. But she did. One step at a time.
You know that when you say you feel fine it means Fu#!edup, Insecure, Neurotic, and Emotional.
Me? I feel fine today. Feel well soon. Sending good thoughts in your direction.
Marty Net
Thank you for sharing this Sarah. I've seen this Ted talk a while ago, and it touched me very deeply as well. Keep your faith in yourself, and get well soon. You are a wonderful person. Greetings from Germany.
I saw this video some time ago and even bought her fantastic book. I remember welling up and crying when I first saw the video, again when I read the book, and once again today watching your video. Talk about wanting to reach out and give someone a big hug! Your story has a long way to go, but thanks for bringing us along with you.