March 23rd 2015

I awoke at 5, my foot twitching, sending me a message that I my bladder was too full, and if I didn’t catheterise it would soon be too late.

I didn’t sleep after that, knowing my all too brief visit home was about to be over.

Amber came in to our room at 7, got into our bed for a chat and a goodbye for a few minutes, then was gone.
Lily came in an 45 minutes later, as usual saying she had only a few minutes before she had to get the bus.

That I wouldn’t see either of them for possibly 3 months definitely seemed to weigh more heavily on myself than on them.
Three months to an adult is quite a long time, to an 11 year old .. Well it’s just a number, rather than a reflection of not caring.

At least that’s what I tell myself.

Dan White came by for a quick visit, and said he’d see me in Louisville before too long. He was wearing shorts, reminding me of the changing of the season in Britain and how much I liked paddling in the springtime before work.

I drove to Heathrow, Dani with me, parked in the short stay at Terminal 2, and then the poor girl unloaded my heavy case and then her Heavy Husband and Wheelchair combo.
We checked in, and she saw me to the Special Assistance bit.
At this point I’m acutely aware that despite every ounce of goodwill, I’m designated freight rather than a passenger, definitely on the airline, (and often, in my head, the rest of the time too ).

As the few minutes before she left me ticked by, that familiar sense of sadness and regret came over me. Regret for the sequence of events, almost certainly within my control, that would have prevented my accident, and sadness for the consequences of it, affecting my children, my wife, and my life.

I’m on the flight now, a few hours into the 14 hour total journey.
It’s not anywhere near as daunting as 2 months ago, my knowing that my destination hotel, hospital, therapists there, are all survivable.

I find myself looking beyond the end of this clinical trial, to the possibility of my being chosen for what has become ( at least for me ) the Holy Grail.
As I’ve alluded to before, they are doing amazing things in Louisville, with the help of The Christopher and Dana Reeves Foundation, in the desperate search for a cure/ treatment of paralysis through spinal cord injury.
So far 8 guys like me have surgically received an Epidural Implant, and ( certainly the initial four ) regained some sensation, control and function below their spinal injury.
Not walking, perhaps barely standing, but controlled movement, and control of toilet ( restroom ) function represents a massive improvement in lifestyle and dignity.

Surveys of the Spinally Cord Injured 2 years after injury have shown that 98% would forego walking ‘ just’ to have the Big Three back ( the 3rd being sexual sensation and reaction ).
That might seem strange to anybody without this injury, but the loss of those 3 truly is a shocker, along with the more outwardly obvious inability to walk, sit up, lean over, move legs, move arms, use hands and even simply breathe.

The Big Idea is to operate on 35 people in the next few years, a number large enough to prove or disprove this as a ‘treatment’.

I can’t tell you how much I’d like to be on this particular trial, having the opportunity to regain something, indeed anything.

One thing is for sure… That by being here, I have more chance than if I’m not. I can’t select myself, or have the option to pay for it ( though it would be crazily expensive ) so all I can do is to be in the arena, and be compliant, and be clinically suitable.
The first two I CAN influence, the third I can’t.

If offered the chance, then I would take it ( and there is the eventuality of it not working ) and it would mean another year at least, I’m guessing, here in Kentucky…. for the pre op, the operation, and the post op retraining of paralysed parts to function again.

It probably won’t be the case that I’ll be selected, but I need to at least try, to make my own luck.

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