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.

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.

Care

You may tire of me as our December sun is setting
'Cause I'm not who I used to be
No longer easy on the eyes
But these wrinkles masterfully disguise
The youthful boy below
Who turned your way and saw
Something he was not looking for
Both a beginning and an end
But now he lives inside someone he does not recognize
When he catches his reflection on accident 

-Brothers on a Hotel Bed - Death Cab for Cutie

Of all the suffering ALS creates the most overlooked is the suffering it inflicts on primary caregivers. For every loss the patient endures, someone has to pick up the slack and that person is almost always the caregiver.  Think about that, you watch your loved one slowly die and you are expected to be their nurse /medical aid/social worker  and more. Your workload and stress ratchet up as your loved one declines. It is hard to imagine a scenario more likely to result in major depression. I do not know why we put so much burden on spouses or other family members but it is the standard practice in this country. Why Stephanie is expected to regularly perform tasks that Medicare considers to be "skilled nursing" with little or no training is beyond me, but that is our system at the moment.

No ALS caregiver, not the unpaid ones anyway, signed up for any of this nonsense. If you ask them most will put a brave face on it, but nobody actually wants the job. They have been thrown one of life's biggest curve balls and have only the inevitable loss of their person with ALS to look for release from their duties.

Of course all this radically changes the relationship between the now patient and now caregiver. More often than not they are a married couple as is the case with me and my wife Stephanie. How caregivers react to the new reality varies greatly. Many times a caregiver simply can't handle things and separations are not unheard of. I am very fortunate that Stephanie is as strong as she is because without her advocating for me I would be much worse off. Thanks to my situation her life is nothing like what she expected but she still fights for me. I have gone from a fit and active husband to one who is pretty much only good at making things wet and/or smelly. I can tell she hates having to be so involved in my personal care but she does what needs to be done. All this familarity with my every bodily function as well as the day to day stress has put a damper any real intimacy, just one more relationship challenge.

We are fortunate enough that we have been able to privately hire a couple of part time assistants to give Stephanie a few hours a week off. We are lucky to have found two outstanding aides, I look forward to my time with them and I know Stephanie really appreciates their efforts. People of low enough income who are on Medi-Cal get full time assistants as well as pay for family members who are providing care. It hardly seems fair that the surviving partner is expected to go essentially bankrupt before such care will be provided.

Caregiving in ALS is overlooked and under appreciated. The caregiver of a person with ALS has one of the most difficult jobs I can imagine, one which will only end unhappily. My caregiver may not  always feel like it, but she is the rock I depend on and words alone cannot express my gratitude or how sorry I am that her life has become so dominated by my disease. ALS is merciless. 

On Loss

Death,  dying and the like are the subject of much human study.  Generally what you'll talk about is the black line of no return. Dying of ALS is just like dying of anything, I imagine, except that you get to watch as the things that made you feel alive slip away one at a time in slow motion.The lesson ALS has to teach you is that you have a whole lot of dying to do before you get to the line.

At first the losses are small.. can't open a twist-off bottle cap anymore... can't wear contact lenses anymore... then they eat away at the things that make us alive.  Can't have a simple conversation... Can't eat solid food... Can't be the husband Stephanie deserves ... Can't ride a bike.  So many losses that you can't comprehend it all in real time. Only later do you discover that you can't get your bike gloves on anymore. You laugh and make the best of it, but some part of you is forever gone and you know it.It will happen a million more times.

Your personal life suffers a similar fate. Being a natural introvert, I never had very many people I was very close to.  I did have quite a few"bike friends", however.  I don't see much of them these days, appearing mostly like a ghost on a FaceBook comment.  When, however I run into someone in real life there is an understandable tension. While I have (mostly) had time to adjust to my changes, they are seeing maybe 6 months of decline all at once and you can see it in their faces.  Everyone says you look great, but you don't.  A rare few actively avoid me. Everyone deals according to the best of their ability to do so. 

As I get more and more locked in with my chair, I feel less and less part of the world. As I loose the ability to perform my own self care more and more of that duty falls on Stephanie  and the assistants we have hired. Between them  I am definitely not lacking for hands on human contact but strangely feel like I am. I think the problem is the chair and all the other equipment between me and everyone I interact with. My human contact these days no matter how kind my caregivers are is all fairly clinical. I don't really get to snuggle up to someone on the sofa or lie with my sweetie in bed. 

Really the hardest thing to deal with is what ALS has not taken from me.  I am still me. I still have a full set of human needs and desires but virtually no ability to do anything about them.  I still feel things just like I always have,  though my reactions aren't what they were.  I can see the people around me getting on with their lives, lives upon which I  can only add difficulties. I can imagine a life for Stephanie that does not involve me, and it both kills me and gives me strength.  I am almost a completely normal person, just one small problem.

Time and Camelot

So, so you think you can tell Heaven from Hell, blue skies from pain.

Can you tell a green field from a cold steel rail?

A smile from a veil?

Do you think you can tell?

  -Pink Floyd,  Wish you Were Here

Lately I have been thinking about the nature of time. I suppose it is a natural thing to be a bit preoccupied with given my relative lack of it. Whatever the motivation, the subject fascinates me. I have spent time trying to understand it as a physical phenomenon, Time, it seems, can be stretched, it can be compressed but the arrow of time always points in the same direction.

The physical aspects of time,  while fascinating, has really only one feature that really affects the human experience of time:  the arrow. On a day to day level time is constant, it neither slows nor speeds except in our heads. We and everything we know exist on the bleeding edge of time, an unspeakably profound mystery we take for granted every moment of every day.

Now humans, like any animal, are designed for survival which tends to skew our perception. We tend to be threat oriented which biases our perception and can leave us quite stressed at any given moment. It is particularly interesting because after enough time has passed nostalgia takes over and what may have seemed a  particularly stressful time might have something in it that becomes a cherished memory.

In my own life there are a few years that stand out like no other period, roughly 2001 to 2012. For me those years are Camelot. I ruled  with my queen and we adventured with our young knights. Now just like the real Camelot things weren't perfect, there were dragons to battle and barbarian invasions to repulse but we always found a way. Like, I suspect, the real Camelot it didn't feel much like a golden age at the time, but nostalgia has worked its magic. Those moments have passed, I am now just the broken fisher king.

   ...         

 I sat upon the shore

 Fishing, with the arid plain behind me

Shall I at least set my lands in order?

London Bridge is falling down falling down falling down

...

-T.S. Eliot, The Waste Land

In the end all anyone has is the present moment and the possibilities moving from one moment to the next presents you with. Choice is what makes you alive and so much more than anything else in the universe, the ability to choose how to put your possibilities together. As my own possibilities become more and more limited my ability to partake in life's  activities… work…  self care…  food...  drink...  sex...  I become less and less alive and the gift of each moment becomes more starkly apparent. Every one of us builds our lives moment by moment, sometimes our options are pretty limited, but even now, for me every one is a gift.

That brings me back to Camelot and on to my final thought for today, one which I offer without proof. Every moment is eternal, existing somewhere like a bubble in spacetime. My Camelot still thrives somewhere just out of touch and always will.