Fourteen years ago I had one of the coolest, funnest, hectic-est jobs in my life: Demo God for Microsoft Research’s Virtual Worlds Group. I worked with coders, artists, writers, interns, and musicians to put together and run demos to show off our amazing Virtual Reality platform. I love to collaborate and the VWGers were a passionate, talented group to play with. At its best my job was exhilarating.
Demos are fickle beasts. Software in development is notorious for breaking when you demo it to anybody with clout. I remember frantically sprinting to my office to recompile a tearful intern’s project for an internal mass demo. I got it working and she was able to demo the work she’d spent months creating.
I had a blast in the Virtual World’s Group. Management politics was a mess but the geek troops made an amazing Virtual Worlds platform way ahead of its time.
Before becoming Demo God I was co-leader of VWG world-building tools with Kevin Goldsmith. We had lots of laughs and did good work.
Fourteen years ago – October 17th, 1997 – I sat at my desk trying to code. I’d done no work the previous day although I’d tried hard. My epilepsy pre-seizure symptoms had been bothering me for days and on the 17th I had to admit that my Brainrot was back. I couldn’t work. Every time I forced myself to code the symptoms got worse. I was sad and afraid.
My MSFT office door.
At age 25 (1977), while student teaching for my Elementary Ed certification at the UofMN, I had some strange, nasty spells and was diagnosed with temporal lobe epilepsy. While teaching my first 5th grade class I took Phenobarbital for a year, which controlled my seizures. I hated the drug – I called its effects “living in a baggie” – and when my symptoms abated I got off Pheno with my neurologist’s permission.
In 1988, while working on my biggest game to date for Activision – called Future Cop at the time – Brainrot hit hard. For 3 1/2 years (88-91) I was extremely sick and on massive doses of various numbing anti-seizure meds as we tried to find one that worked. By 1991 I was a candidate for brain surgery. Luckily the symptoms started to abate. Although I still had infrequent seizures and tons of pre-seizure symptoms I threw myself into completing the game, now called “Free D.C.!” Due to time pressure from company investors (release by Xmas or die!) the game was released before it was finished — the only one of my three games that wasn’t a hit.
In ‘93, through an insane sequence of events, I was hired as a programmer by Microsoft (not too likely with only a degree in El Ed.) I had 5 good years at MSFT although none of the projects I worked on made it to market.
Every time Brainrot hit me I’ve been neck-deep in highly collaborative, exciting work: Elementary Ed teacher training and big collaborative software projects. I love to collaborate with passionate people but it’s kryptonite to me.
Fourteen years ago today I sat at my desk with a head full of sparks, unable to code. For the next months we tried to find tasks I could do for VWG but I was too sick to work. From 1997-2003 I had frequent seizures (I don’t black out but am incapacitated by them.) By the time my neurologist found effective anti-seizure meds (Lamictal and Keppra) my seizures had caused brain damage which resulted in my Central Pain Syndrome and cognitive losses.
Since 1997 I’ve tried, when well enough, to work. I had a brief clear spell in 2007 and coded a very playable version of ChipWits (Margaret did a great job creating the art) but was too sick to polish it to my satisfaction for commercial release. In the last few years I completed Channel Zilch and now Angry Robot is giving it a good long look.
For 18 of my 59 years I’ve wrestled with brainrot. I hate the pain and the years lost but I’m proud of what I’ve accomplished.
I continue to pour all of my words into my rewrite of Hel’s Bet. I finished the new Enterprise heist chapter and my first two readers, Brook and Kellyn, are big fans. It’s been slow but worth it. The new chapter is way more thrilling than the previous version. It ratchets up the antagonism between Mick Oolfson and his nemesis Captain Ishwald.
Weather is warm and I hike and paddle daily.
I like to read on the islands. Mika doesn’t like to swim so she can roam free.
It feels great to see the end of this rewrite. In June I go agent hunting!
I still have control of my pain when I’m at rest. When I’m in neurological pain I can stop what I’m doing and perform a few toe exercises and stop the pain. That fact is an amazing upgrade to my life.
Pretty much any activity involving my brain still produces pain, but I can rest and recover between bouts.
I’m in better shape than I’ve been in a decade. Walks no longer exhaust me so I walk 2 to 3 times more than a year ago, probably averaging 1 1/2 miles of vigorous hiking a day.
I’ve started a structured diet to whittle off some of the winter’s lard. Every other day I eat 1/4 my usual amount – a light lunch spread over the day. It’s a great way of getting some of the benefits of calorie restriction without true fasting. Food tastes great on the semi-fasting days!
Writing is still a bit painful, but it’s getting easier. Finishing Hel’s Bet wore my neurons to a nub. That’s been the pattern of my brainrot – pushing hard on a project and paying for it with pain and degraded cognitive skills for months or years. I feel good that I gave my all to Hel’s Bet.
Time to walk the pooches in melty snow and then do some Hel’s Bet PR.
I realize I’ve been letting Facebook cannibalize this blog. I post daily updates on Facebook – it’s been a great social hub for me – and updating the blog just never happens. So here goes – the Recent Life and Successes of Droog:
My health continues to improve! I am working on dealing with the pain caused by my kryptonite tasks as it happens and am having some success.
I started jogging a few weeks ago and it’s been great for me. I run to the mailbox – 1 1/3 mile roundtrip – every other day:
Yesterday I went on a 4 mile hike/run on a beautiful stretch of the Ice Age Trail along McKenzie Creek with Brook and it was exhilarating. I love trailrunning! I now enjoy exercising again – after 10 years during which it was just too painful.
I am well over halfway through my rewrite of Hel’s Bet! I’m on page 507 out of 805. I had a breakthrough week last week – 106 pages – because I ran into a streak of chapters that needed only light rewriting. I am going to try to finish the book this month. I am confident I will sell it.
We’ve had some bear problems at The Pad in the last few months:
I can’t leave my trashcan out on the road the night before the trash truck comes or a bear munches on it.
The loons have 2 chicks! They are already about 2/3’s the size of their parents and confident divers. The parents are constantly on guard because of hungry Bald Eagles:
The Tamarack Bog has been dry and the pitcher plants have sent up their weird little flowers:
My new used Jeep Cherokee, Casey, is a champ! It’s a solid car:
I’m doing great and plan to do even better once I get this dang book out the door.
He asked me to drop him a line and this is what I wrote:
Thanks much for stopping by my blog and commenting:
Your book has had a huge positive impact on my life. I am thrilled to be in touch with you.
Brainrot is my “affectionate” name for the epilepsy/pain condition which has disabled me periodically for 15 of my 57 years.
When brainrot first hit me I was 25 (1977). Then it was primarily an epilepsy condition centered in the left temporal lobe, but with a minor pain component. I’ve never had grand mal seizures; my epilepsy has been given a few different labels, including psychosomatic. Phenobarbital stabilized my first bout of brainrot and I was able to work as an elementary school teacher and then enter the computer game industry and write 2 hit games.
In 1988 brainrot knocked me out of commission again for 3 ½ years. Years spent searching for the right seizure med. The pain component was greater during this bout, usually before or during seizures. I was even evaluated for brain surgery in 91 just when my brain was stabilizing again. In 92 I dove back into computer games and in 93 got hired by Microsoft Research to code and manage in the Virtual Worlds Group.
After five fun, intense years at MSFT, in 97 brainrot struck again hard and I have been struggling with it for the past dozen years. From 98-2003 my seizures were out of control and the pain accompanying them became almost unbearable. The pain became horrid all the time, although seizures drove it through the roof. A wonderful neuropsychiatrist in Seattle, Dr. Vernon Neppe, worked with me for years to find the right meds to stabilize my seizures, which turned out to be Lamictal and Keppra. Dr. Neppe diagnosed me with Thalamic/Central Pain Syndrome. He thought that my seizures had damaged my thalamus so that most incoming nerve signals were labeled as pain.
My feet and lower legs were always at some level of pain – classic neuropathic symptoms. As my pain level gets higher I get flashes of pain down my left arm and then right arm. At its height my pain feels like a geyser of agony erupting through my skull – completely incapacitating.
I moved to my cabin in the Wisconsin woods in 2004 and living in this quiet, wild place has been tremendously healing. The general trend of my health has been upward, with a huge reduction in pain in the fall of 2005 which allowed me to do some programming and writing again. But my pain was constant and was amplified by activities such as intense conversations, doing even moderately complex operations involving lists and time, and listening to some rhythmic sounds.
Every few years I have searched out a new pain doctor for evaluation and treatment. Two years ago I went through a battery of tests at Marshfield Clinic and the U of Mn but the only relief they could offer was heavy painkillers that I didn’t want to take. Last summer I started seeing a counselor who recommended local pain specialist Dr. John Brendel.
I bought your book last fall after reading a great review in New Scientist. I am writing a sci-fi novel, Hel’s Bet ( http://helsbet.com ), that stars a woman who is into brain self-hackery, and The Brain that Changes Itself seemed like perfect fodder. As I read your book I thought about my own brain but couldn’t come up with any way of applying neuroplastic intervention to my brainrot.
On my first visit to Dr. Brendel he heard my history and said that he’d like to try something new. Was I familiar with the term neuroplasticity? I told him I’d read a book called The Brain that Changes Itself and Dr. Brendel was excited because he had just heard you talk at a pain conference. He told me that most of his patients just wanted pills to make the pain disappear.
His first suggested exercise was to find a smell that was comforting. I immediately knew my comfort smell was the scent of balsam fir needles. I was to smell that smell whenever my pain was at its peak. He encouraged me to experiment, to feel what actually worked and go with it.
I got no relief from the balsam pillow – it was soothing but the pain was still as pitiless as ever. I decided to try multisensory pleasure and started what I called my Sunset Healing practice (https://dougsharp.wordpress.com/2009/04/07/troubleshooting-my-brain/ ). I live in a cabin facing west on a lake and sunsets are wonderful. I took 20 minutes every sunset to pamper every sense – smell: the balsam pillow, hearing: a CD of soothing harp music, taste: fresh fruit, sight: a beautiful sunset, and touch: the feel of my two dogs’ fur as I petted them.
I quickly discovered that only the sense of touch offered relief, so I concentrated on petting my dogs (which they love!) I petted them with my feet and it was immensely soothing, but the pain level overall didn’t budge.
I started to try different ways of petting the dogs with my feet and suddenly started to feel startling flickers of complete cessation of pain. I zeroed in on what I was doing when I felt those painfree flickers and quickly discovered that it didn’t matter whether my feet were feeling pleasurable sensations, it only mattered that they were feeling new sensations and that I was paying close attention to those sensations.
As I experimented, again and again I felt my pain flicker completely away. It wasn’t a gradual reduction of pain slowly dipping from 5 (on the subjective 0-10 pain scale) down through all the levels to 0 – it was an immediate flicker from a 5 to 0 to 5 again. I concentrated on refining my exercises, guided by the pain-free flicker.
What I discovered is that I needed to practice tasks that makes me concentrate on new sensations in my feet . The sensations didn’t have to be pleasant or soothing; they just had to be new. This made a lot of sense to me under the neuroplastic model. I could visualize new pathways being established and strengthened, routing around the damaged pathways in my thalamus.
The np model gives me a clear picture of what I’m doing when I “play footsy”: I am practicing feeling the real world.
So every day I do one or two ten-minute sessions with a box of objects that I manipulate with my feet – coins, marbles, a box of cards, string, paper, pens. I am training my feet to pick things up and manipulate them. In my quickest sessions I just dump the box and pick up every object with my toes and put them back in the box. In longer sessions I’ll put playing cards back in their box with my toes, write some words, balance things on the back of my foot, try to discover a pattern in the texture of the carpet.
Within a few weeks of starting these exercises my pain was entirely under control when I rested. I found that when I feel pain I don’t need a full 10-minute footsy session – I can feel around with my toes inside my shoe or take my shoes off and do a simple tactile task – following a seam with a toe, finding a toenail that needs cutting. I sometimes leave coins in my shoes to give my toes something to play with.
The neuroplastic model has also given me a new attitude toward my pain. I am so used to pain that it’s easy for me to ignore pain of level 3 or lower. When I’m in a little pain now I know that by ignoring it I am strengthening the painful, damaged neural pathways. That motivates me to do np exercises.
I had hoped for some reduction in my pain and was astounded that I often feel completely pain-free. I had given up hope of ever feeling relaxed and at ease in my body.
The transformation of my life has been profound. I can enjoy being around people (I am naturally sociable but my brainrot makes interaction painful). I enjoy exercise and take walks now to relax – 4 months ago I walked every day but was always exhausted and needed hours to recover. I am much more in touch with the world through all my senses because I don’t have to clench myself against constant pain.
As someone who loves science I know that I may be fooling myself about what’s going on. It’s hard to do a valid experiment with N=1. But I do have hope that my experience might point the way for effective neuroplastic pain management for people suffering from Central Pain Syndrome. The fact that mine was caused by seizures rather than a lesion might mean that only borderline cases could benefit.
I still have significant cognitive and pain challenges (https://dougsharp.wordpress.com/2009/06/05/next-challenges/ ) but I am certain that I will be able to find or create neuroplastic exercises to recover what I lost. One of the greatest things about the neuroplastic model is that I now feel responsible for my recovery. I am no longer waiting for a neurologist to find the right mix of meds to fix me. I developed my np pain exercises and I know I can develop exercises to rebuild my lost ability to deal with complexity.
Of course I would love to work with the best neuroplastic specialists to rebuild my lost cognitive skills. When I saw your comment on my blog I immediately thought – wow! I bet he can hook me up with the best people to work with. Any referrals would be wonderful.
Thanks again for your great book and your passion for spreading the word about our brains’ potential for change.
I’ll report back here when he replies.
I jumped the gun a bit on my Bye, Bye Brainrot post. I have broken the back of my pain (!!!) but my cognitive problems are still problems. I can completely douse the pain when I am quiet and at rest, but dealing with complexity and intense interactions reinflames it. The important thing is that I can control the pain AND I can work around my cognitive limitations.
The fact that I can now control my pain when at rest is the important thing for now. I continue to be able to exercise more, enjoy myself more, and write more!
My problems with complexity made drawing the following diagram a huge challenge to me (it took many. many hours), but it was worth the work and pain to help me visualize what I’m up to with my neuroplastic exercises:
When dealing with my “kryptonite tasks” – lists, intense conversations, sequencing things in time – my pain returns bigtime. I can now take a break and reduce it to zero. I am confident that I can reclaim the skills I lost through neuroplastic exercises – drawing and music and programming. After I finish and sell Hel’s Bet I plan to get in touch with experts in neuroplasticity for evaluation and design of rehabilitative exercises specific to my cognitive losses.
I’m at Cafe Wren waiting for the car to be tuned up for the drive to Philly for a big family reunion. I recommend their Pecan Feta Spinach salad. Yum.
This Old Brain is a cathartic tune about Brainrot that I wrote and recorded in 1998 for Zilch Spacecasting Network’s smash hit CD “Pink Toads”. Twitch out to my inimitable Spaz Jazz stylings.
This Old Brain
This Old Brain, This Old Brain,
I’m thinkin it’s what I’m where.
This Old Brain needs some work.
Brother, you got a synapse to spare?
This Old Brain done blew a fuse,
Talk too much, my tongue confuse.
This Old Brain, grey slug of goo,
Gone bad on me. What I do to you?
This Old Brain was a powerful ride,
Horsepower to spare, real roomy inside.
This Old Brain, pop the skull top.
This Old Brain, jack it right up.
This Old Brain need a new set of plugs.
Change the oil and see if it still dougs*.
This Old Brain, gonna freeze it cold,
Hook it to a ‘puter, do the Big Upload.
This Old Brain givin me a pain,
Watch it wack, drivin me insane.
This Old Brain think a fine thought or two,
Think a few more before it’s through.
– Doug Sharp
*Verbifying my name as the action of my brain is my favorite bit of this lyric.
Thanks, everyone, for the wonderful response to my Bye-Bye Brainrot post. I feel loved (not that I ever doubted ;^)
I got email and phone calls and blog comments galore from friends happy at my escape from pain.
I’m always taken aback by people’s praise for what I’m doing. I’m happy if people find inspiration in me, but the lion’s share of the credit for getting me through this cruel decade goes to my family and friends.
My parents raised me to believe I could do anything. They also raised me to grateful for the gifts others give me.
I’ve always felt that people with big egos are ungrateful crackpots. Every word we speak was shaped by thousands of human mouths and minds over history. Every human-made object we depend on – car, shoe, computer, spork – is the fruit of a historical collaboration that goes back to sharpening rocks.
A human saying “LOOK AT MEEEE! LOOK AT WHAT IIIIIIIII DID!” is very like a robot claiming it designed and built itself. Sad, really.
The natural state of a single human in nature is dead. Socialism starts at the mother’s breast.
Thank you, family, for always being there for me.
Thank you, friends, for cheering me on (and up ;^).
Thank you, Brook and Gisela, friends and aides, for being my rocks.
Thank you, patron friends, for stepping in last summer and saving The Pad.
Thank you, hominid who figured out that banging rocks makes more than pretty music. That was brilliant!
I am healing. Last week I broke the back of my pain. I control it now and the only time I need to feel pain is when I forget that I no longer have to endure it.
I had given up hope of healing. I wished at most for reduction in pain, but in the past weeks I’ve had hours of peace within my body. I’ve felt sensations I’d forgotten existed – warm breezes that just tickle the hairs of my arms, the relaxed feeling of tired muscles after an evening ramble. I am hearing and smelling more detail in the world. I have cried many times in the last month as I’ve experienced small pleasures that I had forbidden myself to remember.
I love where I live – my cabin, Martel Lake, the woods and bogs – even more because now I can savor its subtle pleasures. I found an amazing haven to help me survive brainrot. Even in the depths of my pain it was easy to smile at a Martel Lake sunset –
I clenched my body and spirit against cruel and relentless pain for 11 1/2 years. I ignored my body and deadened myself to subtle pleasures because when I opened myself to feeling, the pain surged in unchecked.
In 2003 when I lived on Capitol Hill in Seattle I joined a yoga class, thinking it might be perfect to help me relax and keep limber. I had to quit because I couldn’t tolerate the first 5 minutes of the class. When the yoga teacher told us to relax and tune into our bodies, to listen to our bodies, I couldn’t stand what I heard. My body was screaming and by listening I amplified the pain.
It’s a luxury to enjoy my body again.
I have reestablished the healthy neural pathways between my brain and my legs and feet. I reinforce the connections by doing simple exercises with my feet.
For years I’ve done my best to shut out the false messages of pain coming from my thalamus and now I can do it.
Strangely, I bought Doidge’s book last year to do research into neuroplasticity for self-brain-hacker Heloise Chin in my book Hel’s Bet. Dr. Brendel suggested we attempt to treat my pain with neuroplastic techniques and I was gung ho.
I’ve been taking lots of voice notes about my exercises and how they’ve changed my life. Grist for the Brainrot book, which will now have an unexpectedly happy ending.
My energy is amazing now that my body isn’t fighting pain every step it takes. I now take deer trail hikes with the dogs to relax. I bring a branch lopper along to clear obstructions (the deer love me!) Before this healing I hiked every day but it was always a huge push, hurt like hell, and left me exhausted for hours.
Brainrot interrupted my life twice – 1988-91 & 1997-2009. I have now learned simple techniques to stop it from ever destroying my life again.
Watch out world, Doug Sharp is back!
Finishing this rewrite of Hel’s Bet is the hardest thing I’ve ever done.
The current state of my brain is hyper-sensitive to complex sorting and scheduling and pretty much anything that has to do with making correspondences between 2 documents (forget 3!) or within a document.
Looking back over my writing of the past months I discovered that the only time I got momentum going is when I had completely new chapters to write – that was reassuring and eye opening. That means that I can still write (or so you guys assure me – I don’t think you say nice things about HB out of pity for your brain-damaged colleague ;^).
I had thought that by digesting my rewrite notes into a simpler form I would break the rewrite logjam but instead I just concentrated all the things my brain hates.
I came up with a solution that I know is going to work. I decided that what I need is a daily list of writing tasks that I can check off as I finish them. Assembling that list and sticking to it is a toughy for me so I asked my friend and aide Brook to collaborate more closely with me on the text. We are meeting at his coffee shop, Café Wren – http://www.cafewren.com – at 2.
I love collaboration. I know this is going to work!
Will share news of my new writing regime’s success.
Still trying to wring art and joy out of my balky lump of neurons,