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