Howard Speaks

Oh. Hello reader!

Listen, can you hold on a moment? I really need to finish this…um…call.

BRB!

Me: So, you’re saying I just hold these empty halves of coconuts to my ears and wait and you’ll eventually send me a message to confirm that one of the following is true:

1. you are either some deity or another;
2. you’re an alien from another planet;
3. you’re the ghost of Arthur, King of the Britons, and I’m using these coconuts all wrong?

[Silence]

Me: Ah forget it! Piss off! I’ve got people waiting on me!

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To Begin With…

So, Laurel’s been doing a great job here on this blog of ours, keeping you all posted on our lives, the good (e.g. Bellingham, Julian, Zuki our dog, friends, family, etc.), and the bloody awful (you know what I’m sayin’).

I’m so grateful to her for that, and for the millions of other ways she’s been there for me, and I’m deeply grateful to the many friends and family members who have showered us with support. It means EVERYTHING to me!

Random Thoughts

It feels like it’s time that I chime in here on the blog, and frankly it would be somewhat therapeutic for me to download a considerable backlog of thoughts from my noggin and upload them into your heads, otherwise I ruminate and ruminate and that’s just not good for anyone!

Those of you who know me pretty well also know that I have a tendency to take the scenic route when I try to share my thoughts on just about anything. Therefore, I’ll employ a method that helps me to keep things from going too far off the rails: a simple bulleted list of bits and pieces, in no particular order, with no narrative arc whatsoever.

I hope this makes this as painless as possible for all of us, but be warned: I’m of no mind to sugarcoat what I’m going through. That said, I’ll try to alternate the bad with the not so bad or good.

• ALS sucks. (Just in case this wasn’t abundantly clear already.)
• Friends and family are AMAZING! (Oh, yeah, kinda said that already too.)
• Don’t ever say to anyone who has ALS, “Just be like Stephen Hawking!”
• You know you’ve lived a good life when, upon developing a life-threatening and physically disabling medical condition you have SO many offers of support and assistance from friends and family that you have to ask some of those friends and family to take on the responsibility of converting those offers into actions and getting them done. This is NOT a bad problem to have!
• America’s for-profit healthcare system is a moral abomination. People are bankrupted and/or die every day because they can’t afford the care they need.
• As of February 1, 2019, my employer of 18 years, Western Washington University, generously allowed me to cut my hours to 20/week, while maintaining all of my benefits, including the healthcare that has covered me, Laurel, and Julian all these years. I’m opting to work the afternoons, which allows me plenty of time in the morning to take care of myself: time for meditation, reading and writing, etc. This has made a HUGE difference for my wellbeing!
• ALS is a cruel thief. If you had been a physically active person like me, you have to stand by (more often sit) and take it as ALS gradually steals one physical activity after another from you. At first you feel the loss of the beloved activities the most (e.g. hiking, cycling, yoga, brewery hopping on foot, long walks on the beach, playing guitar in a performing Rock&Roll band, etc.), but pretty soon it’s excruciating to not be able to chop wood, build a fire in the fireplace, work in the yard, tie shoelaces, button up shirts, reliably hold your knife and fork, stuff like that. And, in some ways, thanks to that nagging pain in the ass called regret, it’s just as difficult thinking about the activities you never tried, or never tried long enough to get into them, or never did often enough even though you knew they were good for you and would make you healthier.
• Ok, to be fair, every once in a while it feels fantastic to so easily be able to decline a task requested of me!
• These things I’ve had stolen from me, and those things ALS is working tirelessly to steal next, I see and/or think of nearly every minute of every day. I notice when someone is simply tying their shoes, jogging along the road, driving in front of me with their freshly muddy mountain bike on a rack on their car, students throwing frisbees on the lawn on the quad on campus, musicians in videos playing stuff on their guitars that I used to be able to play, and so on, and so on.
• Ok, to be fair again, ALS hasn’t knocked me out of making music altogether, at least not yet, and it has even forced me to learn a new way to play guitar. I had one of my guitars set up for lap slide style of playing: guitar on lap, facing up, plucking the strings with my right hand and sliding a steel bar across the strings to play various chords and notes. For the past bunch of years, on most Fridays, I’ve attended a drop-in acoustic jam session at a local pub. We sit in a circle, with our instruments and voices — guitars, banjos, mandolins, fiddles, etc. — one by one each person gets a turn to choose a song, mostly from the bluegrass, old timey, folk, Americana music genres, they call out the key the song is in and perhaps some basic chord progression info if it’s not a simple song, and everyone starts to play and harmonize vocals when possible, and it looks like this (I’m the guy nearest the door.):

 

It’s truly lovely, these have become very dear friends of mine, and they have been incredibly patient as I’ve been stumbling around trying to learn how to play in this very different manner.

• ALS, like the Honey Badger, doesn’t give a shit whether or not you are afraid of death. But this narrow point doesn’t bug me, because I’ve never been all that afraid of death, as in that state you achieve when you are no longer alive. I don’t fear what, if anything, comes after death, don’t much care, and I certainly don’t believe I’m going to be judged and punished.
• Dying, on the other hand — the actual process: that accident, or violent attack, or a long, painful degenerative disease — yes, that is something I’ve always feared, like when I’ve been up in the mountains on a trail with a lot of exposure, or when I’ve been around guns of any kind, anywhere, or when I watched my mom die slowly from cancer. Just my luck, after being tortured to death, eaten alive by wild animals, or buried alive, ALS just happens be near the top of the list of least favorable ways to go.
• Another positive thing amidst the gloom, after many years of being interested in   photography, I’ve discovered the simple pleasure of using Instagram to get all artsy fartsy with photos. Since the vast majority of Instagram users view the images posted there on the small screens of their smartphones, I enjoy the challenge of working in such a small scale, to consider the composition of the shot as I point and shoot. Not everything is meant to be artistic, sometimes I just post images of things I like, but if you’d like to see my stuff you can find me at @howardmuhlberg, and here’s just one teaser photo:

• I am ambivalent about the idea of a “bucket list”. On one hand, it feels like a good, solid carpe diem kinda thing, one possible way to follow Thoreau’s great advice, “…to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived.” Sadly, however, by the time I was diagnosed and in the relatively few months since, there are many items that might have made it onto my list — had I ever focused and drawn one up — that are no longer options for me. Various travel ideas typically rise to the top of the informal list I keep in my head, but travel has become very difficult for me: I require wheelchair service in large airports, airplane seats, normally uncomfortable, are even more so now, and at any destination I’m severely limited in terms of how much walking I can do. (If I make progress in accepting a wheelchair into my life, I might be able to manage more than my imagination currently allows.)
• Another thing I’ve been ambivalent about most of my life: Tattoos. I never had a negative opinion of them, nor of those who choose to get them, but I always thought to myself that, for the life of me, I couldn’t think of anything I felt strongly enough about to want to permanently display it on my body by having ink injected into my skin. Then ALS came along, robbing me of one of my greatest passions, playing guitar in a Rock&Roll band, and there we were, Laurel and I, on the big island of Hawaii this past November, and I saw a tattoo shop and for the first time ever I thought, “I’m getting a tattoo and I know exactly what I want!” I figured, if I could no longer play the guitar the way I used to, I’d still like to have a guitar with me everywhere I went. And as I thought about what this tattoo would look like, I thought about other things that meant a lot to me, I thought about how I always felt a kinship with hippies, always felt that love, peace, nature and music were my guiding forces, and so, after sharing these basic ideas with a sweet artist named Douglas at South Seas Tattoo in Hilo, HI, he drew this and then tattooed it onto my left forearm:

And though I really thought that would be it for me — no sleeves, no hearts with knives piercing through them, no “Mother” tattoo — the last thing I’ll share with you  in this installment of Howard Speaks has to do with an experience extraordinary enough to inspire my next tattoo, which I’ll be getting in a few weeks.

• Perhaps it’s my inner hippie, but I’ve done a little exploration with mind-altering substances over the years. Hence, I was already a proponent of moderate, spirituality-focused use of psychedelics when a recent spike in media attention was focused on their use for therapeutic purposes, most notably via journalist Michael Pollan’s recent book: How to Change Your Mind: What the New Science of Psychedelics Teaches Us About Consciousness, Dying, Addiction, Depression, and Transcendence. I’ve said enough here already about ALS, I assume, that it would not be surprising that depression and anxiety are pretty much par for the course. Therefore, when, through word of mouth, I learned of a fully trained shaman with 10 years of experience doing guided, one-on-one psilocybin (aka “magic mushroom”) journeys just across the border in B.C., Canada, I jumped at the chance. The story is WAY too long to tell in full here, but in a nutshell, during my 5-hour experience I was able to face and not back down from the intense fear of having a terminal illness, to weep and empty out a substantial amount of grief over what ALS has stolen from me, and was then filled back up to overflowing with the exquisite awareness of my deep, loving connection with the many people in my life, and with nature. The connection to nature took the form of an owl, which I now feel both looks out for me and IS me, and will be the subject of my next tattoo.

Thanks SO much for reading all that, more than I’d planned, but it feels great to have put it all out there.

Thanks also for all the love and support everyone has been sending our way. It is deeply felt and truly matters!