Phantom Limb Pain

I might start by describing phantom limb pain in a way that those who don't have it can fully understand it.  I always describe the pain as sounds, stereo sound. In one channel, you have pain and sensation you recognise or remember. This is water running down your arm, or bugs crawling over your arm.  It's the “sounds” or pain you can identify; you’ve felt it before.  In the other channel, the sounds are violent, erratic and a combination of constant pain and bursts of pain.  If this pain were sound, I would describe the base pain as a buzzing fluorescent light; it's neither quiet nor loud, but it's constant, and it's the noise that wears you out the most.  Mixed into this are bursts of pain; the severity, duration and frequency of this pain vary, but it's LOUD.  This louder pain is extreme; the pain “level” would be similar to someone striking your hand with a hammer, full force.  However, the difference is that the pain is “ON/OFF”, its like a square sine wave in how the pain hits.  There's rarely a slow build-up of this increased pain, and there is no slow fall-off either.  This pain would sound like a stick welder striking an arc, or a drop saw cutting aluminium.  This is the pain that gets your attention, and it's what I am referring to when I talk about my phantom pain.  The other, familiar, pain and sensations are easy to shake off.

Controlling the pain.

Can I aggravate or soothe my phantom pain?  Not really. I’m not taking any medication for my phantom pain. I did a few rounds with all manner of medications, and I found they all rob Peter to pay Paul.  You might knock the edge off the pain, but you can't think straight or remember how you got from one place to another.  I do know, without question, flu shots make my phantom pain go through the roof - I have to take three days off work and isolate myself, my “post flu shot” phantom pain is that bad.  And that's why I haven't had a flu shot in two decades.

I’ve fallen off bicycles and motorcycles, fallen off my work bench in the shed and down a set of stairs.  None of that made my phantom pain worse.  Though I’m pretty sure cold weather makes the baseline hum louder, so I keep my short arm covered and warm.  There's no magic bullet for phantom limb pain; you just have to learn to live with it. And, like it or not, everyone close to you has to live with it as well, in one way or another.

How do I manage phantom pain without medication?  Probably poorly, but I have a technique that works; it just has drawbacks.  I know that my method for managing my pain has cost me relationships, of all kinds, and you have to find the right workplace to use it to get you through the workday.  It's taken me 20 years to get this technique right, and I’m fortunate enough to be in a line of work where it fits.  I simply engage my brain in tasks that require it to focus and work - solve problems, think deeply and process information, focus on tasks that require great detail and error control.  You just lock in.  The pain fades.

The drawbacks start with complete and utter mental exhaustion.  This has knock-on effects, like mood; mostly, patience diminishes, and you tend to isolate as stepping away from the comfort of concentration fuels the pain.  Distractions, especially useless or pointless ones, tend to fill your performance reviews with lines like “unapproachable” and “abrasive”.  Most employers and coworkers, once I explain phantom pain and how I’m managing it, understand and make provision for it and are generally forgiving.  A distraction, when you’ve just spent 30 minutes getting your brain to quiet the pain, and you’re superfocused on your work, brings the pain back on at full tilt immediately.  So, the pointless distractions are frustrating.

You find an employer who understands, it's good - you go to work, grind out work non-stop for the day, the boss is happy, and you go home.  The people you're close to have to put up with me for much longer, and I think that's why, for a very long time, I would bring work home - subcontract work, or just lock on to a personal project.  My mental resources, outside of “work”, were limited, and I used that limited resource to be a Dad for my kids.  They’re all older now, the boys would have seen me at my worst, in the very early days of phantom pain.  My daughter, especially after her mother left, got the workaholic Dad.  I’m very fortunate and grateful to have three great kids who understand and are forgiving when they need to be.

Outside of work and family, my mates get it once I explain why I suddenly doubled over in pain or grind my teeth in pain.  Phantom pain has never prevented me from living; it's just small, short bursts of pain punctuating your day.  I couldn't blame phantom pain for interfering with my deeper relationships. I’ve never met a woman who didn't show care, or sympathy, or a drive to help with phantom pain.  However, as I mentioned, my mental resources on a daily basis are limited, or my time is limited by taking on work or projects to act as a painkiller.  And that limited resource has to be dedicated to being a Dad, because that is my current priority.

On/off the bike

Does using my short arm, either on or off the bike, aggravate the pain?  Not entirely, no. I’d say I get a sore shoulder on that side of my body on long rides (200 km+). Most of the roads in Queensland are rough, so bumps and hard hits through the prosthetic haven't ever registered or increased the phantom pain.  The same with weather, hot, cold, wet or dry, the levels of phantom pain I’m experiencing at the time aren't affected.  Cold weather, maybe, but I can push through short rides and just wrap the socket of the prosthetic arm to keep it warm for as long as I can.

Off the bike, working in the shed, for example, I’ll use my short arm as best and as often as I can, and if I injure myself there, it's not immediately painful.  In fact, I typically won't be aware of an injured short arm, but I “imagine” pain when I find the injury, if that makes sense.

What is MY phantom limb doing?

I’ve been asked if I can feel my hand/fingers/arm off my missing arm, and what the arm is doing.  Is the hand clenched? Is the elbow bent? What's going on there?  I have to be careful with this, as “thinking” about my missing arm makes the pain a little louder.  I have a scattered patchwork awareness of my “arm,” but a pretty clear and cohesive awareness of my hand and fingers.  My fingers/thumb and the outside palm of my hand are the parts that light up when the pain spikes.  I can “feel” my hand, and it's like it's encased in concrete; trying to make a fist is frustrating (and a little nauseating), but not painful.

If I do “mirror box” therapy now, I can feel parts/patches of my arm disappear the more I do it; mirror box therapy doesn't seem to affect that loud pain. I do not do enough mirror box therapy to be an expert on it.  Initially, months after my accident, mirror box therapy would send my phantom limb pain through the roof - like someone was skinning my entire arm.  Which is why I avoided it for 26 years.  

Does it get better?

Maybe.  Maybe phantom pain fades, maybe you just build a tolerance.  I do know that, in the really early days, it's blinding pain that probably actually drives you a bit insane.  It's a very real thing, the pain and the reality that it's yours now for potentially the rest of your life.  Medication helps, but it won't stop it completely, and maybe that's enough for you to build enough momentum to build a tolerance where you can rely less on medication.  I do know that I’m less affected by the louder pains; they still hit hard, and I definitely make a noise when they hit, but I am much better at handling those hits.  The pain no longer erases the previous two minutes of a conversation, or calls for a time out so I can walk it off, sort of thing.  So, yeah, it can get better - in time and by building a tolerance and with the right pain management.

Why “Inspirational” Doesn’t Sit Right With Me

Every now and then, someone will call me inspirational — for rebuilding my life after losing my arm, designing/building my own arm, for getting back on the bike and for being a dad who keeps showing up.  One or a combination of those.  It’s a kind thing to say, but it’s never sat comfortably with me.  In my mind, being an inspiration means taking hardship in your life and turning it into something purposeful. Not just to survive it, but to shape it into something that helps others.

Plenty of people go through hell and just keep going quietly.  Some turn their experience into a message that helps others.  I feel like I’m standing here somewhere in the middle — still trying to figure out what my own story is worth and what parts of it might actually help someone else.

So when someone calls me inspirational, the discomfort I feel comes from knowing I still have plenty of work to do - that maybe where I’m at hasn't quite matured enough to be of great value to anyone just yet.  I’m still in the process of rebuilding my life. I’m still a Dad who is constantly learning.  The arm - and honestly, arms - are all ongoing projects.  And while my skill levels as a rider and my riding behaviour are on an upward curve, they are still developing, and old habits persist.  Hence why I’m heavy on the “I’m not here to preach or teach” when I write because I’m full of imperfections.  Even when I reduce the window down to just where I’m at with riding motorcycles.

Originally, my website was meant to showcase the mechanical design work I was doing and what I was capable of in that space - the arm being one of those mechanical design projects.  I know I have talked about the shifts in my attitude (toward motorcycle safety) during the design stage of the arm, but it was actually being out there on the road, sharing experiences and rides with the entire spectrum of the motorcycle community that made things click for me.  I’d gone through a stage where I’d very nearly fallen back into old (pre-accident) riding habits/behavior, and I participated in a few government-funded motorcycle safety initiatives and supervised learner riders with varying skill levels and attitudes.  I started paying attention to motorcycle fatalities in my state and in my country, and soon changed the scope of my website to focus on motorcycling from my perspective, with the aim of encouraging a shift in motorcyclists' attitudes.

I could just swim in my lane and just discuss topics related to riding a motorcycle with a permanent disability, but I’d much rather see other riders avoid a situation anything like mine.  As far as what's involved with riding a motorcycle with one arm, I won't have much to write about soon. I’ve just about got this challenge beaten, and I’ll move on to another challenge as an amputee.

Inspirational isn't what I’m aiming for, and I’m not aiming to be a squeaky-clean motorcycle safety ambassador.  I guess I’m practising the one thing that I am preaching, and that's to lead by example.  Even if that example is still imperfect and still adjusting.

How do you ride a motorcycle with one arm?

I dont know.  I know how I ride bikes with one arm, but I’ve seen a bunch of guys do things very differently and much better than me - guys like Chris Ganley come to mind, and many more riding around out there with missing arms.  I see there's a younger guy with a complete shoulder disarticulation riding a bike really well.  It's good to see.  It means there's a wealth of knowledge in experience ready to be tapped into by riders in the same situation.  When I kicked off on my own journey to ride bikes with one arm, I didn't have access to any of this, the riders and the communities online.

From what I can see, a lot of arm amputee riders dont ride with a prosthetic, which is one way around the problem.  When I was first starting to ride bikes again, just dirt bikes, I didn't use a prosthetic either, nor did I modify the bikes in any way.  I’d just push off to get some speed up and bump it into gear.  To stop, I’d just find neutral before coming to a complete stop.  I recall my first ride on the road without a prosthetic, very soon after my accident, and I didn't use a prosthetic then either - same technique - big push to get rolling, bump into gear and off I went - on an old XJ-650 of all things, so that “big push” took some big effort considering the state of my left leg that early in my recovery.

When I finally got the green light to ride bikes again, I just assumed I would need a prosthetic and went off and designed it.  I had an idea of what I wanted/needed to ride again based on my riding experience to date, which was mostly riding bikes with two arms.  I didn't quite factor in the extent of my injuries and the limitations they presented.  Hence, my arm has a range of movement I can't fully utilise.  I didn't understand these limits until after I built the first arm and started riding properly.  Properly on the road and in traffic and exposed to more situations, environments and weather than what I’d had trundling around in a cul-de-sac at home.

In those early days, as my body was exposed to more time on the bike, muscles not used for nearly two decades having to fire and perform, left me with wild headaches and quite often, after every ride, in a fair amount of pain.  The socket and my residual limb learning to live together on long rides was also a struggle for a while.  I’m glad I managed to push through on days when I questioned whether I needed to ride again.

I do still ride my bikes without the prosthetic, but only in my yard at home.  I believe the safest way to ride my bikes is with the prosthetic.  I’m not riding in a controlled environment; I’m riding on the road, with traffic.  Those quick responses required of me for sudden changes NEED stability, confidence and good control of the bike.  It's also a legal requirement of mine to ride my bikes WITH the prosthetic, and I’m okay with that.  Full transparency, I CANNOT ride the TRX without the prosthetic - that riding position, with one arm, is bonkers when riding around my yard at home.  I’ve never tried to ride the TRX without the prosthetic anywhere else, but I’m happy with the science so far.

Explaining how I ride, using my arm, using words might be a little difficult, but I’ll give it a crack.

I connect the arm to the bike before getting on the bike - fit the “hand” over the handlebar, give the hand a slight push to the left, and then fit the quick-release clip.  Then I throw a leg over the bike.  Pretty simple.  Typically, I’ll give the arm a quick test, pushing it through its full range of movement before taking off.  This lets me know if something isn't quite right with any of the actions I expect the arm to perform when I’m out.

The quick release is a clip with a tether connected to a belt loop of my jeans.  Nothing fancy. In my first version of the arm, I had the tether attached to the glove of my right hand - not a good spot, I found.  Too much potential for accidental release.  Side note: I had ridden my bike ONCE without the quick-release tether.  The hand on my arm is loose on the bars without the quick release.  So, THAT was a spooky and very slow ride home.  I carry a spare quick release on the bike now.

Riding the bike is mostly a natural feeling, but unnatural in the sense that you’re not using your entire arm.  Under brakes, I’m pushing my left arm forward, like you would when you raise your arm up from alongside your body.  This action keeps the arm in the right place, preventing it from folding up when it shouldn't.

Into turns, I’m pushing down from my shoulder, and this is difficult to describe, but there's an initial “quick push” down (or maybe push down + slight pull back?), and then you transition into the turn; the arm begins to move at the elbow as you shift your body around on the bike and into the corner.  With the compression/rebound set right, it's not as clunky as it sounds.  The arm returns to straight smoothly enough by itself or with the same “push forward” action; it’ll come back quicker.

This is the best I can do to describe what I’m doing to “use” the arm while riding my bike.  I haven't had any issues, no contact between the arm and the tank while riding, though I feel I may have two different riding postures: one for left turns and another for right turns.  Left turns, I’m not leaning on the prosthetic as much as I could, as often as I should, maybe.  Right turns, pretty normal, more bend at the elbow.  Images below for reference.

Clutches and braking.  The clutch lever is positioned under the front brake lever.  Only ONCE have I gone for clutch and instead gotten a handful of brakes.  Terifying enough of a mistake that you only make it once.  I did this AT SPEED on the SWM on some crazy twisty back road, and that bike has some heckin good front brakes with no ABS.  I usually brake with one or two fingers (index and middle finger) and clutch with the last two.  The space between the clutch and brake levers is super critical - you want your fingers in there, with gloves on, without any restriction.  Also, super important are the right gloves - I think, normal rider - the top of the gloves isn't an issue.  Whereas I’m trying to feed my fingers down between two moving parts (essentially), gloves with a lot going on on top of the glove don't work for me. on. I have seen a rider running his clutch lever above the brake lever, but that was on a track bike, or just personal preference.  I’m too deep into natural habits now; I couldn't run things any differently without hurting myself.

Taking off on bikes when you’re using one hand to do two jobs is pretty easy; I use my index and middle fingers to operate the clutch, and the remaining fingers work the throttle.  And, yes, I know that means I can't do burnouts unless I nose the bike against a wall.  Which is fine because I’m a dad to a teenage daughter, and I can't afford a steady supply of tyres.

The transition from coming to a stop and then taking off again - like at a set of traffic lights - is index- and middle-finger braking, with the remaining two fingers working the clutch.  That last second or two before the bike comes to a complete stop, I’ll move all four fingers to the clutch, relying on the brake to bring it to a stop.  Then, for takeoff, I’ll release the clutch enough so as to keep my index and middle finger on the clutch lever, then slip my other two fingers behind the clutch lever so I can use those fingers to work the throttle.  It all happens and feels much smoother than I’ve made it sound with words on a screen.

Wheelies - can I do them? Only on accident, and it's always the bike and not me, officer.  Seriously, I haven't tried to wheelie the bike outside of accelerating abruptly and savagely, knowing that's what the bike will do.  I’ve not done what the cool kids do and just lift the front wheel like it's nobody's business.  I’m just not that cool, and I’m not interested in the consequences of getting it wrong.

Switching bikes is something of a readjustment - both for my brain and my arm.  Today, I dusted off the TX and took it for a quick ride, and it was awkward as all heck.  First up, I’d just gotten off the Zed, and my brain needs five business days' warning before switching bikes.  Second, I do make a small adjustment to the arm between the TRX and the Zed - the roll position of the wrist is slightly different between the two bikes.  I have the two positions marked on the arm, and it's only about 5 degrees of rotation, but the effects are night and day.  That TRX is a great old bike, though, a short ride to blow the cobwebs out brought a big smile to my face.

The TRX is old-school; you have to rev-match your downshifts, so let me walk you through it.  Under brakes, my index and middle fingers are working the brakes, and my remaining fingers are working the throttle - we’re doing rev-match downshifts without the clutch!  I’m yet to blow up a gearbox or bend a shiftfork, and the only issue I have is an easy one to fix because it's my technique - I “tap” my gear lever, not “push” my gear lever on downshifts.  So, mostly on the Zed, second into first, can see me hitting neutral.  I think, from memory, the SWM would give me a surprise neutral between 4th and 3rd downsifts - again, I’m “tapping”, not “pushing”, the gear lever.  I’m working on this; it's a me thing, not a bike thing.

Controls like indicators, etc., are just extras, and that's where it's my thumbs time to shine.  It's probably the busiest digit on a normal ride. I have these crazy ideas of outsourcing some of my thumbs' work to another part of my body (not that part) or to the prosthetic, but I’d just be adding complexity to a system that doesn't really need it.

There’s probably a video that needs to be made to add visuals to all of this, but that’sabout it for how I ride my bike with one arm + one pretend arm.