Night

Nighttime is the worst. Stuck in one place for hours, sleep comes in fits and starts. Only my thoughts to keep me company, I often descend to a realm of self pity: why me, what  if, what next. It's not that I am in pain or anything, just constant discomfort. It's like trying to sleep in a room that's too hot except I can't toss and turn so I just lie there looking for the first dim light of dawn. Listening for the uptick in the humm of early morning traffic as long distance commuters begin their day. If I am ever ready for this all to be over, to die, it's in these lonely, uncomfortable hours.

As I see my first face of the day, usually Stephanie, nighttime fades into the place where past suffering goes. I have always found it fascinating how quickly the worst suffering fades in your mind after it is done. I don't give it another thought until the night comes around again. I suppose it's a normal human coping mechanism, this forgetfulness or maybe I really haven't suffered that much. Either way, morning brings, even for me, new hope and possibilities.

Will

ALS (and,  I imagine any other debilitating terminal disease)  comes with a flood of emotions,  most of them bad. I already discussed envy at some length here. Another frequent one I deal with regularly is hate;  hate of ALS and what it's doing to my body. Physical activity was something I particularly enjoyed, pushing my limits, doing things that many people thought was kind of nuts. I took good care of my body and it's quite difficult to deal with,  emotionally, the state it's in now. That I hate what's happening to me is pretty much inevitable. Emotions often are predictable, especially when you know something about the person. Less predictable are how people react to what they are feeling because the will can become involved. You can't help feeling the way you feel, but you have a choice with how you react to it.

A fairly convincing argument could be made that the ability to choose how we react to emotions is the key factor in what makes us human. It's not easy to be sure, the animal part of your brain pulls you strongly with emotion, but you absolutely have a choice. Some people will always be slaves to emotions. I was just reading about a man, who had just been released from prison for killing a man in a road rage incident, who got shot and killed in another road rage incident. Slave to emotions. I feel a lot of powerful negative emotions with this disease. I don't want the time I have left to be miserable so I don't feed them. It's hard and I fail sometimes but the struggle is worth it.

Maybe the hardest thing to deal with regarding this flood of emotions is forgiving myself for them. Once I realized that the negative feelings came from a place I could beyond my control, that the real problem was my reactions to them, I realized there wasn't really anything to forgive. It's like that in life, know that some things come from the animal part of you and give it its due,  you can't control the impulse, feeling, whatever it is. You can and must, I think, choose how you will react to them. Knowing that has helped me immensely in dealing with things. I hope it helps others reading this too.

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People ask me all the time how they can help us.  For the most part we are doing okay for now ourselves but there are a few smaller charities that provide direct support to people with ALS that don't get the recognition they should. One of the ones we like i ALS Guardian Angels. Over the Labor Day weekend, September 3rd to be exact, Stephanie will be doing something a little crazy to help raise money for them. click on the following link to learn more. https://www.youcaring.com/als-guardian-angels-575001
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Epic

I was laying in bed the other day waiting for someone to come help me get up and start my day. As I lay there a little uncomfortable as I usually am I was thinking about all the times I intentionally put myself into uncomfortable situations. I spend most of the day somewhat uncomfortable, mostly just irritations mind you, itches I can't scratch, a hair in my eye, insane amounts of saliva I occasionally choke on. It wears on you though, through the sheer relentlessness. It's funny because looking back some of my fondest memories are of times I put myself in much more intense discomfort.  Things like insane bike rides, backpack trips and the like.

Last week I had to go to San Francisco twice for two different doctor appointments. Both days it was quite windy and there were kite surfers near the Golden Gate Bridge. I couldn't help but envy them a little. Envy their freedom of movement, all the sensations, wind, waves, the cold Northern California ocean. They looked so smooth and peaceful from a distance but I  know up close they were all pushing their physical limits and that is something I can relate to.

I've done a great many things in my life that I would call "epic", I think more than most people living comfortable lives in modern societies. I have very few regrets in what I've done in my time here. The one thing that has been stuck in my head since seeing the kite surfers is I wish I had been even more epic. Had more time to be epic. Being epic doesn't have to mean risk to life and limb necessarily, I've been a parent almost half my life now after all, but it probably means discomfort. That is my advice to you, gentle reader, take it from a man facing his own mortality: go big. Try to do something that makes you uncomfortable every day. Go for a bike ride on a morning when it's 25 degrees out. Take up surfing at 40. Change careers even if you're "successful" if you're not happy doing it. Tell that girl you have a crush on her. Do things that scare you, that might be ill advised, that your mom might not approve of. Don't be reckless or harmful but do go big. The regret of not having tried something you wish you had is almost always way worse than the regret of trying and failing. Road rash and bruised egos heal, missed opportunities do not.

I will leave you with this thought. Everyone has it in them to do something epic. Even me in my current state. Every time I write it makes me nervous hitting the "publish" button but I'm always glad I did. Comfort is a good thing but being uncomfortable is way underrated.

Envy

The medical texts all call ALS a rapidly progressive neurological disease. The word "rapidly" is a bit deceptive. While it is indeed rapidly progressive relative to other neurological diseases it is really not usually when compared to other progressive diseases like cancer. When I was first diagnosed unless you really knew me it wasn't obvious I had anything wrong at all for quite a while.  Over time it took my body bit by bit and continues taking to this day. As this relentless grinding down of my body took its course my psychological state has naturally changed as well. Maintaining your "self" through all this is an extremely difficult challenge in emotional management. I can easily see why  many afflicted with ALS become so unpleasant to those around them.

My current physical state, all things considered, could be much worse. Still I get frustrated thinking of the things I can no longer do. Out of this frustration grows my least favorite emotion...  envy. It is a natural thing to feel a bit envious of others, I suppose it even can serve a useful motivational purpose. This envy is different. Powerful and ugly it hits like a wave of nausea. I have to close my eyes and let it pass over me until my rationality returns.

What I really hate about it is the things that set it off. Things that are supposed to happen, good things. People living their lives, going on vacation, a swim on a hot day, riding bikes, enjoying a nice dinner, things I used to love but can't do. I envy old men playing with their grandchildren as I will never do. I envy young people starting their lives. What I hate about the envy is it takes the place of what should be there, joy as my family and friends get to do what they love and be happy.

Like I said before, envy is, of course, a totally normal feeling everyone gets from time to time.  Mine has been seeming much more intense lately. I've seen articles written about how social networks like Facebook can sow envy. While I do spend much more time there than I used to my problem is in me and not it. It is born out of my own frustration at my current situation. Realizing that has been the key to beating the envy back. I need to let go of what is gone so I can enjoy seeing those I care about living their lives. Those moments where my frustration hits me are my worst, not that you would notice from the outside. I can still be as bundled up with my feelings as I ever was. Below the surface the battle will continue as long as it needs to.

Still a Man

My day typically starts with an assistant getting me sitting up and straight in bed. I have to sleep sitting fairly upright or I start to aspirate my copious drool. It's not the easiest way to sleep but I've adjusted. During the night I slide down a little making the adjustment necessary. The next tasks are getting me fed and clean. Not being able to swallow, I take all my nutrition through a tube directly into my stomach through a hole in my abdomen. Breakfast out of the way we let my meal settle for 30 minutes or so then it's off to the shower, a 100% assisted affair requiring lifts slings and a special shower wheelchair. That is just my morning. I am quite lucky in that I the people who take care of me are kind and patient. Regardless of how good the care is you start to feel like a piece of finicky equipment needing constant attention. It's easy, even for me to forget that no matter how weak I get or how much help I need to get through a day under the patient I am still a man.

A few weeks ago my Mountain bike friends had something of a tribute for me. The big local race series runs from late March to mid June and for the last race of the season they traditionally do a costume contest. One of my friends dug up an old photo of me (complete with my circa 2010 mutton chops) blew it up and made a mask out of it. He borrowed it one of my old Mad Cat jerseys and did the race as me. The race promoter said some very kind words about me to
everyone . A high school team I used to coach gave me an award and said more kind words.  It was a great night and I really enjoyed it. I had complete strangers introducing themselves to me. Like I said, it was a great night. Even in the midst of this I couldn't help feeling like a patient, a victim of a dread disease. A symbol of courage facing the unthinkable as well as someone to feel sorry for. I have to remind myself that behind all that is still a man.

I don't mean to be ungrateful in the least. My friends and caregivers are just plain amazing and I appreciate all that they have done and continue to do. I just feel like I get a little lost in all the stuff this disease brings with it, the real me. The man. As awful as it is this disease really only affects my voluntary muscles. All the things which drove me before are still there screaming to be let out. I am a man, all the flaws, fears, desires, needs, emotions, strength, weakness, the whole package. I am critically sick and need help and compassion but I still reject pity. Be my friend because you like the man I am not because you are trying to be nice to the sick guy. (I'm not saying that has been a problem.) My life is getting pretty "real" lately and I need real friends to match I think I've been relatively lucky in that regard up to now. Above all don't forget this lump of human is still a man,  I'll try to do the same

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.