Rheumatoid Arthritis, unleashed & undiagnosed, almost destroys a lifeIt has taken a good long while to get comfortable with this condition, and some days there is no comfort at all. But I have come a long way…a long way indeed. And on a sunny Sunday morning, it pays me to look back at the road traveled and appreciate simply making it so far.

Initially, it was terrifying, my taken-for-granted body rebelling in the most unpredictable and offensive ways.  A shoulder would give out, feeling as if pierced by red-hot icepicks. The slightest movement generated pain out of all proportion to the stimulus. I racked my brain for the activity I had done that might have torn a rotator cuff without me noticing, and resolved to be more mindful. Just as the agony was easing up, a knee gave out, stranding me at my work deep in a forest, forcing me to duct tape a stick to my leg and crawl half a mile to my truck in complete bafflement.

Nothing I was doing to myself was precipitating this…what the hell was going on? Joint after joint gave out in quick succession for no rhyme or reason, introducing me, a battle-hardened man, to pain I had never imagined could exist. Sure, I had been sore before…I had been hit by a speeding car, beaten up and stomped, stabbed, fallen from height, broken bones, but this pain surpassed all of that by a country mile. This…this… was inhuman. It vacuumed up all consciousness, every awareness, that was not the focus of agony. It was a realm beyond description, inward focused to a tight point, yet opening to a vastness of new unpleasant sensations and even new colors that went with them. Painbows, I called them; pulsing darkness filled with flashes that filled my head and displaced all else, reducing me to a blubbering, moaning object rocking under a blanket on the floor.

Yes, I was offended. Insulted, even…Everything I had known about my body’s capacities was now wrong. All those years of waking up and slipping into consciousness without even a thought were over. I was afraid to sleep for fear of waking into pain. My corpus was now a hostile place and I was a refugee trapped inside it.   But it went beyond. My entire world and community narrative called me to be something I could no longer be, something I had always been before: capable, dependable, reliable and solid. I had led a platoon of 35 soldiers through a year of service on the Angolan Border. I had built houses single-handed. I had (unintentionally) emigrated to the US with a backpack and few hundred dollars and started a new life. I was running a contracting business and planning an *intentional community with a circle of close friends. Whatever it was, I could do it. The world was my oyster and I was cranking out pearls, and by God, it was supposed to be that way, and that’s the way I intended it to stay.

I muscled through the changes. Head down, obstinate, obdurate, I had a story to fulfill. I had no diagnosis from my head-scratching doctor, no reason  to be less than before, and so the ever increasing difference between what had to be done and what I actually could physically manage had to be made up by reaching down to my gritty Scottish and South African roots and raking up the raw energy and stubborn will to grind on.

At the time, ‘grinding on’ entailed getting up at 4.30 am to work construction to support my wife recently diagnosed with cancer and newborn son. The motivation to knuckle down and ‘get it done’ was huge. My biology was welling up with paternity and care-giving, even as it exploded with rage in my joints and sapped me with fatigue. The desire to be a good husband and father is powerful incentive indeed. Tenacity and ‘workarounds’ won out, getting more ingenious and desperate as my body failed in back to back trains of flare-ups… until they didn’t. There came a day where there was nothing left in the well of reserves.  No more ‘oomph’, as my dad would have said. A breathless feeling prevailed in the calm before the storm. One or two ‘no can do’s’ to potential jobs became a trickle of events missed here and deadlines fudged there over the months.  Over three years the trickle became a torrent of missed appointments and disappointed clients and friends, and then a cascade of unemployment, divorce, homelessness, loss of community and the concomitant unleashing of the hulking mute cousin of Rheumatoid Disease…Depression. 

The ‘me’ that I knew was gone. Stolen from within me despite my every protest and effort. Everything I had put together over 35 years, gone. And the body that made it happen, under siege.

I could choose to die. I felt it as a close neighbor calling me for tea, a comforting distraction from my awful chore. I felt jilted enough by the world and my own body to just drop what I was doing and wander over.

But I had a son.

 

* According to Jonathan, an ‘intentional community’ is a planned settlement of like-minded people, the next iteration of ‘hippie communes’, if you will.  Findhorn and Llammas are notable examples overseas, Essalen and The Farm are in the US.