Monday, October 31, 2011

Injury Update

A year ago I sustained the most significant injury of my life. It has been a truly unbelievable experience. Here's an update on where I am, and how I got here. There will be some detail in here that may seem odd to 99.99999% of you, however the details are breadcrumbs for others struggling with some of these symptoms, and they can matter a lot.

MRI results while trying (unsuccessfully) to identify a stroke
Month 1 through 3: What's wrong with me?
I spent the first few months trying to understand what happened. I dragged in everyone under the sun to help. Neurologists, Eastern Medicine "experts" (nutritional + acupuncturists + spiritual types), Physical Therapists, mental therapists, Specialist-this, and Specialist-that, friends, family. After endless appointments and tests, no-one had a clue, and no therapies were having a positive effect. There were a couple of theories (BPPV, some other vestibular disorder, or brain dammage), but no-one could say with any certainty. By the end of the third month, I was very discouraged. I was considering the prospect that things might not ever change. I might have impeded orientation for the rest of my life. I even backed off of sex while I was trying to sort things out; sex made things worse.

Month 4 through 6: No-one can help me.
By month four, it was clear no-one would be able to diagnose or help my situation. I'd scraped up against online forums and blogs that were pretty scary. There were a handful of people out there who's description of what they were feeling matched mine; not a single one of them could diagnose it, or have it diagnosed. There were some pretty hard stories to read (shocker; gotta love the network). By the end of month six, I'd started to resolve that this could go on forever, and that it was odd that the most common characterization of what I might have, BPPV, could go on for up to "two years." I spent a long time thinking about the "two year" stat that was floating around. How could you actually measure a medical condition going away after such a long duration. I resolved that people suffering from BPPV either killed themselves after two years of pain and suffering, or that they stopped complaining about it and just went on living in the misery indefinitely; falling off of any survey/doctor radar after about two years. Toward the end of month six, the sex cut-back was taking it's toll. I decided to take the condition regression over abstinence.

One of the dichotomy's in April's and my relationship is that she is as empathetic as they come, whereas I'm of a different, much more selfish, cloth. We've traditionally been polar opposites in this regard. Her unwavering belief that "things would get better" defied all logic. There was no evidence that things would get better. On the contrary there was a fair amount of evidence to suggest things in fact would not get better. She believed it though, and spent countless hours booking appointments for me, filtering doctors and experts to remove the wheat from the chaff, and most importantly talking me back from the edge. She's magical at this. It is who she is, and one of my favorite things about her.

That said, things were feeling dire. I didn't know how long I could last.

By now I'd bucketed my condition into two buckets. I either was suffering from BPPV, or brain dammage (that wouldn't show up on a scan (MRI, or CAT)) in the occipital region of my brain. I sussed out the BPPV angle, I went six months without caffeine or alcohol. I like to blame a friend of mine for turning me straight after a rough drinking binge at his house one night, but the reality is that I was cutting out chemicals that impacted the viscosity of the unique fluid that fills our inner ears. If the issue was BPPV, you can (not always, but sometimes) actually hack the fluid density/viscosity (which impacts how the calcium crystals move in the fluid) of your inner ear by controlling diet. After six months of cutting out these two substances, and no discernable difference in my condition, I jumped back into coffee and socially drinking (wine, beer, scotch).

If the issue was brain dammage, the scarier of the two in some ways, I'd bank on my brain re-wiring itself to work around the bustage in due time.

London: Inspiration in the oddest places
On a business trip to London I randomly found myself with a business acquaintance and her significant other... in a bar. This guy was five years my senior and about six months earlier had suffered a very severe mountain biking (downhill) accident in Malibu, CA. Clear brain damage, a week in a coma, smashed chest/ribs, punctured lung; the works. This guy was beaming! He'd fought through this mess tooth and nail. We empathized with each other for awhile. War stories. What therapies helped. Which didn't. Then he said something that has stuck with me. Him: "don't you hate it when someone says 'we're getting old' in the context of our injuries!?!" Me: "I sure do." Him: "Bullshit I'm getting old. This is something else, and I'm going to own it, and then I will destroy it." I can't tell you how many times I'd thought to myself "I'm just getting old." He was right. Screw getting old (as true as it was).

Months 7-9: Bottom of the Barrel.
After a couple of months of doing reasonably well, I took a family vacation that involved a plane, followed by a ferry, and ultimately an old house (built mid 1800's) with crooked walls, floors, stairs, etc. I'd been flying every couple of weeks throughout this whole ordeal for work, so I'd resolved flying wasn't an issue. This was my first boat though. When I got off (I was fine while actually on the water) I was a little affected, but not more than a previous large-boat-ride in the Chicago river with some friends. However, after 24 hours in the old-house, I was a mess. It felt like complete regression. This was a tremendous blow given that things were going ok for awhile. I chalked it up to the lacking flat surfaces or right-angles to ground myself in, inside the house. It really threw me.

Upon returning to home, I was in a bad place. A month or two went by with no "good days." Work and family were keeping me distracted so I was getting by. Then, one day...

Boulder Creek: Epiphany
The kids and I regularly bike up into the mountains along the creek to enjoy life. On this particular trip I decided to push past the disorientation and "fuck it." I was going to move and act like it didn't exist. While playing in the water with my daughter I turned my head quickly to catch sight of my son further downstream. I moved so fast that my eyes didn't have a chance to focus and track along the way. When my head stopped, I wasn't dizzy! That move previously would've resulted in some decent disorientation. What happened?!? It clicked. Right then and there it clicked! For 8 months I'd been hyper-controlling my vision and eyes. Every waking moment of every day I'd been focusing as intently as you would if you were trying to read small letters from a distance. I'd been inflicting unbelievable strain on my eyes, the associated muscles, and associated brain matter in order to control the disorientation. Somewhere along the way I'd been actually causing much of my own agony, in an attempt to control whatever was underlying. At that moment I resolved to do the inverse with my vision. I'd actively not bother focusing on things for a couple of days to see if that helped. Turns out it worked like magic! I'd found at least one culprit in what was dragging this mayhem on. Ureka!

Months 10-12:
The past few months have been great. Things are nearly back to normal. There are acute instances in which symptoms appear, but I've learned to live with them or ignore them (they're fleeting at best). I still don't know what's wrong; I'm just as lost as to whether it's some sort of BPPV (or some other vestibular disorder) or actual brain dammage. Multiple MRIs show no evidence of stroke either. I do know after 12 months however, that whatever it is, it hasn't stopped me from being who I am. I've been able to do everything on "my list" of things (tests really) in the past 12 months; _everything_. Well, there's one exception. I haven't been on a trampoline since I realized bouncing on one could aggravate things. If the result of this injury in the end is that I can't jump on trampolines, I'll be really bummed, but I can live with that one for sure.
self plot of perceived severity on scale of 1 (red); bad, 2 (orange); good, 3 (green); great
My To Do List (to validate that the orientation related things were still ok to do)
Swim: check (various pools, lakes and oceans)
Swing Olympic length pool underwater while holding breath: check (multiple times)
Run: check (ran on all sorts of surfaces for many miles. ran the Bolder Boulder)
Bike: check (I've biked a ton, both easy and hard rides)
Wrestle: check (plenty with the kids)
Handle jet-lag: check (several trips to East Coast, and a couple of trips to Europe)
Spiral Staircases while jet-lagged: check (catacombs in Paris)
Fly on airplanes: check (tons of flights)
Drive: check (driven plenty)
Jump off high objects: check (rocks, walls)
Induce Vertigo: check (stood on very narrow rock formations greater than 40' off the ground with sheer drops on either side). I still need to do glass floor at Seattle Space Needle.
Use computers and small devices/screens: check (everyday)
Walk through house in the dark: check
Sit down with eyes closed: check
Ride bike in a straight line indefinitely while head looking off to side (peripheral vision thing): check. this one took awhile, but I'm baaaaaack!
Drive car in straight line indefinitely while head looking off to side (peripheral vision thing): check.
Play Video games: check
Have intense sex: check
Massage: check
Cross Country Ski: check
Downhill Ski: check
Skateboard: check
Balance across logs: check
Everything else that I can't remember at the moment: check

My Extended List: Stuff I've done in my life, but I'm not going to bother repeating.
Fist fight

Finally: Today
Things are not 100% better, but they're 99% better. I've had a few consecutive months of feeling really solid, and I've noticed a true shift in that time period. I can confidently say I'm in a good place now. Even if I regress at some point in the future, I know I can have multiple months of goodness after several months of badness, so if I lapse back into it, I'll have light at the end of my tunnel.

I can empathize with others now to a degree I've never been able to. This is really powerful and I'm really happy about it.

The human mind/spirit prevails. A friend of mine who'd suffered a life-threatening accident on snow a couple of years ago told me "the mind/body will heal itself. calm down." I doubted him gravely, but he was right. The mind/body will find a way.

If you think you're suffering from BPPV (or some sort of vestibular disorder onset), and believe that is what I have/had, then I can tell you things are better now, and none of the reset maneuvers worked; none of them. There was a definite progression from bad to good; granted it took a year to get here. Hang in there.

No comments: