To sleep, perchance to dream - the quest for my inner dolphin
You may have noticed the abrupt decline in postings to my blog. I have a huge backlog of stories, all in rough draft, to tell, but I've been too busy seeking my inner dolphin to post much.
Last month, I nearly died. Maybe I did die, briefly, I don't know. I had bronchitus. I was smoking 2 packs of cigarettes a day. I took a single Xanax... but more on that in a bit.
Over the last year, I'd become massively clean and sober and single because... there was something wrong with me. I didn't know what, so I started eliminating external factors until there was no external factor left. I had had chest pains and some tests in august that indicated a high bilirubin count and cholesteral problems... I felt tired and confused all the time. It was all I could do to make it to work by the afternoon.
On December 12, I stopped even doing that.
I really thought I was dying. I decided if I couldn't save myself, I'd try and save someone else. I got really focused on, first, finding, and second, saving, Josh Taht, my nephew, from the hell he'd made his life.
I made out my will, leaving everything to Josh, so long as he'd finish my song Rhysling and Me
... which was massively important to me then, and even more important to finish, now, after the Columbia - because the song was about the Challenger, and about the loss of my own magnificent dream
... (an aside, I just got back from San Diego and LA, where I recorded a new version of the song, I'm mixing it down now, while I'm recouperating at Esalen
In saving Josh, I've saved myself. While on that incredible quest (you'd have to read my blog since december to know that story), I talked to a lot of family members - and learned more of the family medical history than I'd ever known before.
Back in November... my friends and family started noticing how much I would mis-interperet things - I was living in a dream state, malfunctioning, having trouble driving...
I embarked on a program to trace my past, which I couldn't remember. I sort of knew I'd been a VP a couple times, had started a couple companies, but that was it. I started taping every conversation I had - not only to recover the memory of it (I didn't know who I was or what I was doing day to day) - but to try and get to the bottom of what the heck was wrong with me.
I opened up a box in the garage I've called pandora's box, where I kept all my unhappy memories... for 20+ years I'd only open the box, long enough to shove things into it. I opened the box and - most of the memories were happy memories (like letters from my first love) - that had made me sad at one point... but filled me with joy to see again, because I'd forgotten everything...
I built spreadsheets with dates, times, prescription drugs, symptoms. I wrote up a business card based biography
... I found a bunch of old emails, filed in an old court case
, that were stunning in their pre-escience about linux, the internet, the fate of SCO - an A+ for ideas and a C- for presentation... I found a great paper I'd written at 17, about behaviorism
, as true now as it was 20 years ago. Who was this guy? I liked him, but didn't remember being him.
I got all the medical records I could find... this was tough as my family doctor died years ago, and all his records have disappeared, but I got good records from domican hospital and my hometown school system.
The questions: Was it genetic? Physical (a blow to the head in my youth?) Environment? Behavior?
Slowly, painfully, I linked every incidence of depression to an external event. I discovered I'd lost the hearing in my right ear before I was nine (I thought it was at 17, but at 9, it explains a lot of the difficulty I had paying attention in school) Clearly, both documented incidences of mania pointed to months of sleep deprivation, and every case in my life where I failed at something for some stupid reason... to Murphy's law... or to lack of sleep!
When stressed I can't sleep
! I've had chronic insomnia since I was at least 9, possibly as early as 7 years old. When a shrink asks you how long did you sleep? "I dunno, I went to bed a midnight and got up at 8, so 8 hours?" - I would reply.
I remember pretending to sleep, at around 9 or so, because my parents got upset if I wasn't in bed, asleep. I've been pretending to go to sleep ever since - sometimes staying awake for legendary periods of time for marathon hacking sessions - sometimes just lying there and counting the knotholes on the ceiling.
I'm bitter, very bitter, that 30+ years, not one doctor asked "How do you describe your sleep?" - but how can you describe sleep, a deeply personal experience, that everyone in theory, shares? Until a few weeks ago, I thought sleep was closing your eyes and watching pretty pictures behind your eyelids until you had to get up and go to work in the morning.
That's not sleep - and I never knew! I've been joking lately that I've spent 40 out of the last 20 years working on the internet... and it's really true!
5 members of my family have sleeping problems, including Josh. My dad has sleep apnea, and when I took the test, I hit on 48 out of 50 of the questions!!! Sleep apnea turns out to be fairly common, 12m americans have it to one degree or another - it turned out that 5 people I knew had it, and the symptoms kept matching up! The panic attacks in the morning, the 10 cups of coffee a day, all of it, suddenly made sense!
So I went with sleep apnea as a preliminary self-diagnosis, and confused, in a daze, I got some Xanax from the emergency room of the hospital, and set off to sleep. This is the first prescription drug I've used in 9 years...
Bronchitus. Smoking. Allergies. No sleep. Total Exaustion
. + Xanax
? I drifted off into the deepest sleep I've ever had... relaxed, completely, flat on my back... and woke up with the worst panic attack I've ever had, gasping for breath for over half an hour... worse... I think I stopped breathing long enough to cause some brain damage.
I woke up crippled in some ways, and reborn in others. My programming ability - for the last 5 years my most used and valuable skill... was gone. I reach for it, even now, and I get tense and anxious. I just sort of wave my hand around back there, wherever I kept that skill, and there's just empty space where it once was. The language "C" looks like "the Matrix". I'm out on short term disability from work... and I'd be collecting SDI today if I could have read the form when last I had it.
That total-scare-dying-xanax thing was on a sunday, I think. After waking up, after 5 hours of sleep, I was focused and rested enough to start making some phone calls and appointments and catching up on things, and researching apnea.
I quit smoking, and started sleeping on my side. In two days, I got 7 hours of sleep, more sleep than I'd had in a a couple weeks, and felt enormously better, concious, centered, focused. Not only that, but I had hope, and great joy, suddently, in life. Maybe, I could fall in love, and get married, and have kids. My musical ability, in decline so much in the last few years that I couldn't play piano or remember lyrics, came roaring back - and on Wednesday my band
had a great gig, (recordings coming soon!). I took center stage for about 1/3 the songs, singing lead in public for the first time in 4 years!
I had a couple of drinks that night, and I had had that Xanax scare... so I made the rational decision to not sleep, if that was what the fates chose for me... and sure enough, I didn't.
I didn't sleep that thursday, either. I was flipping out, screaming into a tape deck, pounding my hands against the pillow, doing all sorts of stuff I don't remember...
That friday morning, my ability to read vanished. Lower case letters were undecipherable, and I had severe perceptual difficulties. I thought I'd had a stroke. Gradually, since, with a few changes in diet and lots of exercise, I've been getting better.
It's still hard to focus on text, particularly on computer screens, for more than five-ten minutes, I can do it better immediately after I get some sleep (I slept on a massage table by the sea from 9-midnight tonight, Esalen is great!) I'm told that reading the news lately is not any fun, so I don't miss reading much. I have been using Dragon Dictate to type some. It's hard to edit stuff. I'm not the typing fiend I was.
I am basically suffering from an unholy combination of SAD, sleep apnea, insomnia, and overwork. I have some hope I can return to work by the end of the month, but I still have a sleep study at the Stanford institute to undergo and I have a ton of other doctors to see.
There are some things I need to do that I've been putting off for a long time. I've already done a radio show
. I've got an album in the works, the concept is "a day in the life of an engineer" - that I've put off doing for about 10 years now, it's time to do that. It's called "Dolphinia" - Dolphins are about breathing, and being playful, and if you aren't breathing properly your inner dolphin is in trouble.
I've spent the last week making sure Josh got out of rehab ok, and having adventures of my own. Yesterday I hit a rock at midnight on route 1, blew a tire, and ended up spending all night listening to the ocean, frogs, and birds - and biking, later for help. I hung out with a sea lion for a couple hours...
I hope that in writing this, that maybe, just maybe, I've stopped some parent or doctor from medicating their kid with ritalin, or something even more drastic, when, maybe, possibly, the real problem is merely sleep - or maybe even deafness. Be scientific about it. Don't depend on a shrink's subjective interperitations. Get a sleep study done. You may save a life, or make living one, worthwhile. If I can save just one person from the 30 years of hell I've been through, well, I won't say it's been worth it, but it would make my regrets easier to bear. Let me know<./a>.
After I quit taking all prescription drugs 9 years ago, I created an internet service provider and did things that a well-meaning but grossly under-technically qualified shrink dismissed as delusional... after that I did some neat stuff for quite a few companies - all the way up to present day, where I've been heavily involved in creating MontaVista Graphics
and MontaVista's CEE
I'm weak on dates of these events, I spent a couple weeks in a real haze, and I hope to figure out when all this happened, later....
I've wanted kids of my own for so long but made a rational decision not to have them... while it's still possible I'm bi-polar, there is nothing in my family's genetic history to indicate thus. 12-20 miles of biking a day seems to be the cure, I'm getting 3-5 hours of sleep regularly now, with an hour nap. I am still not able to read well, so there is some brain damage that needs to be worked around, but I have so much hope for me (and for josh) and for the whole darn world that it overflows me, now. I am happy for the first time in a very, very long time. A little lonely, but happy.
I don't know where I'm going next, or what I'm going to do. I think I'm washed up as a programmer, perhaps permanently, but maybe I'll heal more with some therapy. I have a lot of other skills
, I'll come up with something I can do, sooner or later. But I'm never, ever, going to do anything again for work - that prevents the basic balance that I've found in my life now, with diet and exercise.