The Right Hand of Lightness

The Right Hand of Lightness
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john connor

There’s a joy in going on a long journey in which I get the luxury of sleeping through the whole thing. It’s practically magical. Or scientifically, like teleportation. I was there and now I’m here without any effort!

I’ll never be able to afford a first-class bed on a long-haul flight to somewhere like Australia, but I did once experience this joy on one of my many pilgrimages from London to the Edinburgh Fringe Festival. In the 1980s, I went to so many festivals that I even got to write a book about the thang (“Comics: a Decade of Comedy at the Assembly Rooms,” 1990)!

I took the sleeper train from London’s Euston station to Edinburgh Waverley station. It trundles slowly and gently rocks you through the night. Blissful.

I have no idea if this service still exists, but to do it, you had to travel first class, and for that, the guard wakes you just before you arrive at 6 a.m. with a steaming cup of British Rail tea.

It doesn’t happen often, but sometimes this country can do something that is just about perfect.

I don’t want to rub it in (oh, yes I do!), but the whole thing was then polished off by staying at a posh hotel that one can enter by lift from the station itself. Rather a change from my first trip when I slept on a friend of a friend’s house floor, which was admittedly rather spectacularly sighted at the foot of the famed Forth Railway Bridge. The downside was it was a 9-mile drive in each day to get to Edinburgh and the festival!

This reverie is apt because this is exactly how I felt on Monday afternoon.

I woke up to a finished six-hour infusion. Nurses removed the cannula from my arm while two ambulance people from hospital transport stood invitingly to take to take me home, replete with a soft-looking sheet-covered gurney. Sometimes I’ve waited four or five hours for them to turn up! I’d only managed to wake up long enough to devour a lunch of fish and chips with the absolutely appropriate mushy pea side.

Lou Reed wrote a song about a “Perfect Day“; never did I think it could be applicable to a hospital experience. In this case, though, it absolutely could.

Two years ago, I started on my long, dark journey of taking Lemtrada (alemtuzumab). My multiple sclerosis was inexorably wilting me, and this was a chance to fight it. After my very first infusion, my right-hand connection to my brain was damaged and my right arm suddenly ached. These symptoms only got worse with each infusion. Immediately, walking got even more impaired. Wheelchair tennis became a distant dream.

I could go on, but I’ve done enough of that in previous columns. Now is a time for rejoicing.

Even if it only lasts a few days, post-Ocrevus infusion has felt like having a holiday from part of my MS. My hand, though not completely repaired, has improved substantially. I opened a packet of crisps a few hours later; without resorting to using a penknife and shock-horror-bloodbath, I found myself eating them casually with my right hand.

It’s gone now, but for a few hours, I could even slightly lift my right thigh. The only time this now happens is after exertion, when clonus literally kicks in — something the uninitiated find disconcerting.

I’m among the first to have infusions of Ocrevus (ocrelizumab) at my hospital since the therapy finally received the go-ahead in the United Kingdom. It’s something I’ve fought for and has been somewhat of a struggle.

It’s also the only time in my decade-long struggle with sclerosis that a drug has improved things.

Even if it turns out to be fleeting, it’s worth it.

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