Thursday, October 31, 2013

Happy Hallomeeeee

I'm sitting in the house, waiting to scare children. I'm on candy duty while Jamie (unknown costume), Wyatt (the Grim Reaper), and Gus (zombie) are out Trick or Treating. Truth is, as many Frankenstein and undead jokes I lob at myself (are zombies really stroke sufferers -- thus the sluggish pace and appetite for brains?), I'm apparently not that scary looking. Despite the head scars and perma-sneer, I'm still just a slight, 5' 7" Jew. Not that intimidating. The most I get from kids is a sideways glance at my cane and a look of, "What's up with him?" And at work, I've become the "Hey, how's it goin'?" guy. Not scary, just a vague curiosity. Actually, I think we're going to be lucky to get any sugar seekers tonight; the rain's coming down pretty hard. I'll give out extra Snickers to anyone braving the weather.

The scariest thing about this Halloween is that three years ago today, I was lying in a New England Rehab bed with a divot in my head and underwear on the outside of my pants:

Where did my legs go?

I've also, frighteningly, been contemplating The Ghost of Christ Complex Past. I spend a fair amount of time perusing my blog stats -- 43,000 hits and counting! Despite the fact that an inordinate amount of my traffic seems to come from Ukrainian spam bots, I often take note of my most-visited entries and try to figure out if they're being looked at by human or machine. For whatever reason, this week's winner was my Famous last words. It's powerful for me to read now, knowing it was the last time I typed with two hands, feeling somewhat sorry for the poor slob who didn't quite know what he was in for, and wondering if I've been able to live up to that specter's ambitiously-courageous wishes.

Speaking of my own haunting, I'm reminded of July 2010, a day or two after my cerebral angiogram, when we took a family outing to Tassel Top beach. After having a catheter threaded from my groin to my neck, I was feeling somewhat hobbled (little did I know what hobbled was) and generally distraught about what the future held. I remember taking a short stroll by myself, on a boardwalk through the woods, peering through a spinney of thin trees at Jamie and the boys on the beach; and imagining that I was doing so from The Great Beyond. It was very peaceful and somewhat comforting (thinking I'd be able to watch over them), which is why I remember it still. The brain stores memories in odd places.

Okay, I've handed out a few treats to a few soggy souls and satisfied my morbid desire to get this down.

Sunday, October 27, 2013

In Blog I Still Trust

This past Tuesday I had the honor and privilege of attending and speaking at the 4th Annual Conference on Defining Moments in Brain Injury. Whenever I am entrenched in this community of which I am an involuntary member, I'm struck by how broad a spectrum Traumatic Brain Injury (TBI) covers. Not that it's a competition, but I believe the term is somewhat skewed toward those who have suffered physical trauma due to an accident and/or impact. Although my injury has been just as physically and emotionally traumatizing (after all, my brain attacked me without provocation), I'm thankful whenever I hear stories like that of the keynote speaker's bicycle accident and subsequent PTSD, that I had the luxury of sleeping through my event.

While I hope to soon share a video of my presentation, I thought I would at least summarize it now in the very medium it covers (how meta).

At around 4 o'clock in the afternoon (unfortunately late for a notoriously-logy audience of brain injury survivors), I was one of two speakers on a panel entitled, Through the Smog with a Dog and a Blog (never mind that where I come from, dawg and blog don't rhyme). The general idea was to present different strategies for brain injury recovery. My co-panelist, Rorie, has trained her service dog, Ziva, to provide stability and retrieval assistance (among other things) after sustaining a brain injury from an icy slip and fall in her driveway. And I bet you thought I was the dog. I'm afraid my contribution was the obvious one. After trying to rally the crowd by regaling them with my college streaking story (relevant since the previous workshop covered humor as a resiliency builder), I started with a mind map of some of the problems/challenges posed by health crises at large and brain injuries in specific:

  • The need to communicate news in an efficient way that doesn't tax patients or family members.
  • The need to seek tangible support from friends and family.
  • The need to feel connected to yourself and others (that's especially true for those with brain injuries, since the condition can be a literal disconnection of neural pathways).
This is the mind map of those basic points:







My solutions, of course, are encapsulated in this blog, which has been the primary source of information about my experience from discovery through catastrophe and recovery (communicated by email or the web, whatever your personal preference and without having to manage who told who what when. It has also been a place to ask for help (decorating, raking, rides, just about anything). We have been so blessed to have so many people who want to help, but it can actually be stressful coming up with tangible requests. And the blog was a great way to manage that. Most important for me -- post-stroke -- the blog was a place for me to find my voice again, figuratively and literally, to re-discover myself, and confirm that I'm still me. Also, to help me be heard when my physical voice cannot carry. My first new-brain blog post (written two weeks after my stroke, one day after arriving at New England Rehab, and one handed on my iPod Touch) is all about reclaiming my rightful place and the importance of the blog in getting me that far in my early recovery. Thankfully, it was also a place for Jamie to connect and vent and plead when she needed to. The other important, unanticipated benefit of the blog has been the opportunity to shed light on what is often an invisible injury (much as I like to show off my scars and brace). I've done that here through my brain scans and by describing the work I've had to do.

While this blog has captured some of the greatest horrors and tragedies of my life, it also embodies some of my greatest triumphs and accomplishments (not least of all an opportunity to share my experiences and make some people laugh in a forum I'd never have had the opportunity to do so if it weren't for my brain cloud).




Sunday, October 13, 2013

Twelve Steps

Sorry, time for more self-indulgent philosophizing. For three years now, I've been walking around with a  "New England Rehabilitation Hospital of Portlandmessenger bag sashed across my chest. I don't know if anyone has interpreted that as being from a substance abuse rehab (not that there'd be anything wrong with that), but the possibility inspired me to review the 12 steps of addiction recovery and see how they apply to brain injury recovery (and life) Remember, it's an exhibition, not a competition:

  • Step 1We admitted we were powerless over our addiction - that our lives had become unmanageable 
I have definitely at times felt it was important to relinquish any sense of control over my circumstances. That's not the same as giving in or giving up but simply recognizing that a certain amount of acceptance is required for me to get on with my life. For me, I suppose Step 1 could end with, "we were powerless." I am not addicted to my stroke, but hopping a ride on the Victim parade float can be tempting at times.
  • Step 2 - We came to believe that a Power greater than ourselves could restore us to sanity 
I've struggled with this one, in that I've come to see my own resilience as a power greater than myself (no, I am not God; but there is something within me I was only able to access under the right -- admittedly unfortunate -- circumstances. The whole "sanity" piece is debatable. I'm long gone; no amount of sanding or coats of varnish are going to restore me.
  • Step 3 - We made a decision to turn our will and our lives over to the care of God as we understood God 
I suppose this one might go back to acceptance, which works well with my somewhat fatalistic nature. I don't feel I'm being cared for or watched over, and there's only so much I can do. I am open to the universe.
  • Step 4 - We made a searching and fearless moral inventory of ourselves 
What do you think? Isn't that pretty much all I've been doing for three years? I have definitely gone through phases of asking, "What did I do to deserve this?" The answer is nothing and that no one truly gets what they deserve, because no one deserves anything. Deserving is too close to entitlement, and I don't believe anyone is entitled to anything. Inalienable rights, my ass. There are things you can ask for. Once in awhile, there are things you can earn. Like Mick says, "You can't always get what you want..." And as my friend Tess tells her kids, "You get what you get, and you don't get upset!" Doesn't work, but words to live by nonetheless.
  • Step 5 - We admitted to God, to ourselves and to another human being the exact nature of our wrongs 
I've certainly had some heart-to-hearts with myself, friends, and Jamie, but I have a hard time identifying the nature of my wrongs in that I don't think any wrongdoing on my part played a role in my illness or that admitting them heals me, other than helping my brain reconnect with my "self", which is as close to my "soul" as I get. Are wrongs the same as regrets?They say you regret the things you didn't do more than the things you did, but I don't know that you can count romantic ideals as wrongs. From a Karmic perspective, I always thought restraint was rewarded. Is it possible that you lose points for not doing some things you wanted to (did I just blow your mind?)? But for all that's gone wrong for me, a ton has gone right. I attribute many of those blessings to what I call Social Karma. When it mattered, I made good choices and have been rewarded with strong relationships. Nothing mystical about that; it's basic socio-economics. (Shameless plug: If you're looking for some Instant Karma, I've added a fundraising page to my site, to assist with the purchase of a recumbent tricycle this spring.)
  • Step 6 - We were entirely ready to have God remove all these defects of character 
Too much God in here for a devout agnostic. Again, if I've discovered what I feel are true defects in my character, it would be up to me to resolve them, and I don't think I've found anything I would completely excise. I think our flaws make us as richly dynamic as our strengths. Particularly with my brain injury, it can sometimes be difficult to identify psychological, social, and emotional truths. I remember immediately after my stroke how people remarked on the "flat affect" in my voice. Given my already-bone-dry sense of humor, I wasn't as aware of it as others. I've continued to struggle with better expressing my emotions in a way that comes across as more than sarcastic. I'm a work in progress.
  • Step 7 - We humbly asked God to remove our shortcomings 
No, I have have not asked for the removal. I simply have to remain vigilant of some deficits (such as a lack of filter) and show restraint.
  • Step 8 - We made a list of all persons we had harmed, and became willing to make amends to them all 
I have approached some people from my past, not so much to make amends as to rebuild connections.
  • Step 9 - We made direct amends to such people wherever possible, except when to do so would injure them or others 
Didn't I just do that?
  • Step 10 - We continued to take personal inventory and when we were wrong promptly admitted
    it
     
I'm all for The Examined Life, but I'm feeling like 8-Minute Abs would have sufficed here.
  • Step 11 - We sought through prayer and meditation to improve our conscious contact with God as we understood God, praying only for knowledge of God's will for us and the power to carry that out 
I can't go exactly there, though I have tried meditation and mindfulness exercises as a way of resting my brain and encourage neuroplasticity. And lord knows I'm trying to make the most of what I've got.


  • Step 12 - Having had a spiritual awakening as the result of these steps, we tried to carry this message to other addicts, and to practice these principles in all our affairs 

Does this feel like more of a list of steps to redemption than recovery? I'm sure it's helped a lot of people and will help many more, but my stock pot runneth over. Have I properly carried this message to you, my Followers?

Okay, should I get a Betty Ford Center messenger bag now? Honestly, I don't think I could hack overcoming addiction. Too much work.

Sunday, October 06, 2013

The Road to Recovery

I suppose it's a circle of life thing, but lately I've been saddened to realize that, generally, my goals – from a recovery perspective – have been simply to get back where I started. Early on, it was certainly easiest to set the bar based on the most obvious achievements:

  • walk
  • get home from the hospital
  • get back to work
  • drive
So in many ways it's a positive development that I realized recently how the road to recovery doesn't have to be a loop. Life certainly isn't a straight line either (I know I've taken some detours), and I'm starting to identify encouraging diversions that may not take me as the crow flies but which will make the trek more enjoyable.

I've never been what one would consider an outdoorsy person, though I did climb up a hill and come down a married man. I also wandered lonely the same countryside as Wordsworth, Coleridge, Byron, Keats, and Shelley. And while as a kid I wasn't much of a cyclist (pretty much throwing in the towel  when I hit the curb, landed on my chin, and had to sport a scab goatee for a few weeks in 7th grade), I recently had the opportunity at my brain injury support group to try out a recumbent tricycle, which proved a liberating and inspiring experience. It felt wonderful to be outside and exercising in a way that wasn't a struggle and didn't feel at all treacherous.

So I took to the web and found a local dealer who had a floor model I could rent for a week while considering a purchase. My trusty friend and bike aficionado, Marc, helped me pick it up this weekend; and, so far, I've had the unheard-of pleasure of taking rides down the road with Wyatt on his bike and me on my trike. It's given me a much better use for my old craniotomy helmet:


Of course, I'm already getting ahead of myself and looking into Adventure cycling trips. Maybe I'll even organize a charity ride as part of my book tour (still ahead of myself but at least a vision of progress, not circuitousness).

The metaphor's panning out well for the cards I had made for my upcoming speaking engagement at a brain injury conference: