Chapter 31: Pain, Part I

guitar-tattooFrom the List Of ALS Ironies

Welcome to my life, tattoo
We’ve a long time together, me and you
I expect I’ll regret you
But the skin graft man won’t get you
You’ll be there when I die
Tattoo

Pete Townshend, from Tattoo

A common misconception about ALS is that there’s a lot of physical pain involved, which is kind of understandable. I mean, doesn’t the slow wasting away of one’s muscles seem like it would be quite excruciating?

However, with the exception of only occasional leg cramps, which were pretty effectively kept at bay with medication, well, there’s no pain sensation when motor neurons die. 99% of the time, the biggest debilitating symptom, in the early stages of the disease to which I’m referring here, is fatigue.

No, physical pain might be our bodies’ natural alarm system; it may also be an inextricable part of the experience of being alive, and the foolish pursuit of a pain-free life may actually cause more pain; but mercifully, given all of the emotional pain that ALS brings, at least I didn’t need to pop analgesics everyday and have to deal with side effects and addiction.

Under these circumstances, then, it might seem odd for me to have voluntarily chosen to allow a complete stranger to plunge bundles of 3-15 hollow needles into my forearm for three straight hours, injecting permanent ink into my skin…


November 2018, Hawaii, the big island, just me and Laurel, the first time traveling without Julian in a LONG time, and the first trip since my diagnosis. I’d recently played the last gig I’d ever play as a performing guitarist, and so I was in mourning, in need of some island medicine, and the tiny village of Hawi, at the northern tip, was exactly what we needed.

We stayed in a tiny cottage beside a beautiful old plantation home, a block from the two-block main street that ran through town. This section of road was lined with small shops, cafés, art galleries, and restaurants, and as these were still early stages of the ALS, we were able to walk to a café each morning for breakfast, with our journals and books, to gently start the days, luxuriating in the 75-80° warmth, in our short sleeves, shorts, and sandals, while back home it was 30° cooler and rainy.

At one end of the strip, there sat a tiny shop that normally I’d never take notice of, but there’s nothing normal about ALS, and for the first time in my entire life I spied a tattoo parlor and thought: Maybe?

I had a stock comment about tattoos that I’d use whenever the subject came up in conversation:

I’m not huge fan of tattoos, but I don’t feel judgmental about them, or towards those who get them, and those who create them.

I just have never been able to imagine feeling strongly enough about anything to want to permanently affix an image of it on my body, putting myself through considerable pain in the process.

For a few days the thought festered, privately at first, ideas were conceived and discarded in a very random, disorderly fashion, and then I just blurted it out:

Hey, I’m thinking about getting a tattoo!

Much to my surprise, this was greeted with:

Great idea!

It turns out the tattoo artist in Hawi had a sign on his door explaining that he was sick, we were due to relocate the next day to another part of the island for the second week of our trip, and so Plan B was devised: find a tattoo parlor in Hilo.

The central inspiration for the tattoo was related to my dearly departed ability to play the guitar. And so, a Statement of Purpose emerged:

If I can’t play a guitar, I’ll wear one on my skin.


We walked into Seven Seas Tattoo, just a few blocks from the Hilo waterfront, on a Friday, around midday, and met with Douglas, a longhaired, bearded and bespectacled young man, to whom I told my story and described what I was looking for in a tattoo. By the time we were having the conversation, I’d boiled it down to an acoustic guitar as the central element, with the overriding theme of peace, love and music, in total expressing my inner-hippie.

I showed Douglas a photo of my beloved Martin 000-15S, the first guitar I’d splurged a little on, at around the time when I started to work harder on skills development, which led directly to seriously pursuing playing in a band and performing.

We set an appointment for that Sunday, arrived at around mid-morning, Douglas had produced a drawing that absolutely nailed it, and three hours and a significant amount of pain later I had my first tattoo.

I love it!


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