The Weight of Time

I was browsing through Facebook the other day, playing with the timeline control. I went back a few years and was struck by what I saw. I remember doing all the things in the photos but they seemed... I don't know... foreign. I remember writing the status updates but it didn't seem like my words. The people were familiar but quite a few had disappeared from my life. I knew that my life took a radical change three years ago but this was something else. I hadn't thought about those memories in years,  these were the events that at the time were important enough to me to bother posting and I had hardly thought about them since.

I thought about my little exercise that night as I was going to sleep... what about all the things that didn't make it on Facebook (almost everything ) all the family time, private moments, days worked, things I read, the vast majority of my life that happened before Facebook was there to help document it. I thought about all the things that happened to me that relatively uninteresting day. Then I thought about the other 7ish billion people who also had lived a day that day. More than 19 million person/years of memories. EVERY SINGLE DAY.  The weight of time staggered me.

Where did all those experiences go. Mine were mine, right? I thought about the foreignness the Facebook memories had for me. I don't live there anymore, I thought, that was what made them foreign. They were like the house I grew up in that my parents have since sold. I drove by it once and barely recognized it. I didn't live there anymore and hadn't thought about the details of the house in years. The house was part of my past, and like the rest of my past served to get me where I do live...  right here right now.

So what about all that past, how is it relevant? The past I thought is like the ground we stand (or roll) on. Like the ground you have to be mindful of the past or you might end up hurt or somewhere you don't want to be. The sum of all pasts got us where we are.  The past can and should guide the now but we shouldn't allow ourselves to be trapped by it.

At this point you're probably a bit tired of my amateur philosophizing and wondering how all this relates my life with ALS.   If you've made it this far here's your payoff. As I had these thoughts a realization came over me... how small my current now is compared to what I am used to. I had to remind myself that "I don't live there anymore." "What does it mean to be living in a now dominated by ALS? " I wondered. It kinda sucks. Epicly. I could have offered myself a platitude like"make the most of what you've got" but it seemed kind of hollow. Then I realized THIS is where I live now. Platitude it may be but what the hell else am I going to do. All anyone can do is try and make themselves and those around them as satisfied with life as they can right now with a bit of the future in mind. Notice I did not say "happy" and I downplayed the future. My current situation has given me a new perspective on happiness and the future. Happiness is a moment, it flits away unexpectedly and comes back the same way. You can and should chase it but just remember it is fickle. Satisfaction is more permanent. That leaves the future...  another fickle friend. Don't give up too much of your now for it either. You never know what it holds even with the best laid plans.

Why I Write

If you have been reading my blog posts first off, thank you. I write them for myself but want them to be read. Second, you might be thinking that I am somewhat of an extrovert., expressing my opinions
and feelings freely to all around me. Right about here Stephanie is probably snickering a little at that thought because she knows me best and an extrovert I most certainly am not.

I would not necessarily say that I am an introvert either. I would describe myself as a "social introvert" which I would define as someone comfortable in social situations, even happy, who keeps relationships fairly shallow and totally uncomfortable sharing deeper thoughts and feelings. The social introvert nut can be cracked but it takes work. A lot of work. That's what differentiates the  "SI" that hard shell. I mean most people play some cards close to the chest (to mix my metaphors) but their shells are peanuts in comparison.

So what's changed I ask myself and can come up with no definitive answer. Maybe it's a change in my brain, (which can happen with ALS) I know that unmedicated I have a raging  pseudo bulbar affect.  Maybe it is just the realization that my time is short, maybe I just don't care about whatever put the shell there in the first place. Whatever it is it is not just the blog,  I do it with friends too. I have had friends say how much they like talking to the "ALS Kevin". I kind of like it too. It might get me in trouble but hasn't so far. I rarely say anything mean and people appreciate honesty or kind words, I certainly do. Opening up this way is very liberating.

As  you can imagine I find myself having a lot of time to think. I can't really know what goes on inside other people's heads but I think mine is exceptionally noisy. Ideas just ebb and flow all day. Maybe I am a bit nuts but sometimes I wake up at night and am amazed by the quiet, it having been so noisy inside my head (I often wonder if I am unique in that, I imagine not).  The ideas float away almost as easily, I have to work to compose the good ones  before they're gone.

I have always found ways to channel all this creative energy.  As a child like many I created detailed fantasy worlds spending many a summer day engrossed by my creation.  As an adult I channeled my energy into my work with computers, building complex systems of software and hardware is a surprisingly creative endeavor. There are complicated rules and relationships you need to understand and getting what you want done often requires a significant creative effort. After many years I grew a little bored, by the end of my career I was looking for something new. It seems to have found me.

I write about what I am going through because it is not just my day to day it's my hour to hour. I don't really get sad about it anymore unless something exceptional happens like my arms almost completely failing as happened recently. My good friend Mark said I should write a book about my experiences. I takes a lot to write as much as I am so I'm not sure I can. Maybe I will give it a go, we'll see what tomorrow brings.

An Unexpected Benefit

As my body declines and my need for help increase we have had to hire outside help to aid reduce the burden on Stephanie. So far we've been extraordinarily lucky to have found great people in our circle of acquaintance. Up until very recently the help has been all female, which has been kind of a departure from the status quo around here. Having raised three boys our house has been kind of sausage heavy with poor Stephanie being the sole representative of her gender having any significant presence in the day to day of the house. Now that situation is turned somewhat on its head., I am the one outnumbered.

In my life I have had a few girlfriends, but really I have had only one close female friend and I'm married to her. To be sure, I have many female acquaintances, many of whom I am quite fond of some even fairly close but for me the bar is pretty high as far as who I call my friend for this post. Having worked in a heavily male dominated industry my whole career (Information Technology) I had virtually no female coworkers and anyway, maybe I was cautious or even immature, but chumming around with the ones that were there didn't feel right as I was married.

Now my day is dominated by women. Odds are that any given day a woman gets me up in the morning and turns out my light at night. I find myself really enjoying their company. I really had no idea that I was missing out, I did not consciously segregate myself, heck I even was fairly close to some I thought. I just now find myself enjoying the little differences women seem to bring to my day. The different way they approach thing, the energy they bring. It's cool and different.

Now that I am a total wreck physically and no woman would be interested or even able, I guess I'm letting my guard down too.  I got especially close to one of our caregivers (who unfortunately for me but awesome for her has moved on to bigger and better things) and one day we were messing around with a goofy app on her phone making silly pet videos. It was about then that it hit me, holy crap, she's kinda my friend. It was an odd feeling for me. Now, as I said, I'm a wreck so we're not going to get beers or anything and yep we totally paid her to hang with me , but yeah I have a friend who happens to be a girl. Go figure.

The point of this screed is not to say I actually understand the complexities of the female gender or that I have a understanding of what it's like to be a woman. Those remain as inscrutable as ever.  What it is, however, is an appreciation for the three wonderful ones that have been helping me in more ways than they realize. Thank you seems insufficient. but I am saying it anyway.

A Photo

Twilight fall upon all souls
Darkening our skin and bone
Soon I’ll follow Prudence home
Until then, just let me chase this sun

Soon enough I’ll go, a winters way
Soon enough, though not this day

Soon enough I’ll go, winters way
Soon enough-

Stay the winter, oh, one more day
Leave me to my child's play

-Puscifer, Autumn

Look at the man in that picture. He's got it all, right? Perfect boys, reasonably good looks, it seems to be a beautiful day and what's that twinkle in is eye. Having been there I can clue you in to that one too: his beautiful wife, whom he loves more than anything, is taking the photo. He is on top of his world.

Of course no photo could capture a truly complete picture of a life, but even just a moment like this in your life is something to be grateful for.  I had 45 good years, including some great ones toward the the end. Compared to so many others, my life has been full and blessed. To complain now that it is not as full and blessed as some seems a bit like a rich man being jealous of richer men. Still, it's hard to see so much life going on around me and not being able to join it.That is the single worst thing about my current state, the isolation. Smell the meal but you can't eat. See your bike still hanging in the garage but you'll never ride it. See your wife's body but you can't reach out and touch it.

In so many ways it would have been easier if I just died in some horrible bike crash on May 1,  2013 instead of getting the death sentence I was handed. There have been so many great moments since then though that I would still take ALS over the quick way out. Even now.