GB

I remember seeing a joke in a comic when I was a boy. One character asked another, “If an ‘L’ sticker on the back of a car means ‘Learner,’ what does ‘GB’ stand for?” 

The answer was ‘Getting Better.’ Not very funny, not very memorable. Except it is, because for some reason I remember it.

Anyway, that’s the context for the title of this week’s post. Getting Better.

I’m getting better.

Those of you who read my previous post will know that I have landed myself with a thing called ‘Guillain-Barré Syndrome.’ (Note that GB can also refer to that… just in case you think I just throw these things together.) When I posted that last blog, two weeks ago, my GB (Guillain-Barré) was just on the verge of GB (Getting quite a bit Better). So I thought I’d better do a little update, for myself as much as for you, gentle reader.

A little over six weeks on from being admitted to hospital, I am pleased to report that I am back home again and walking, unaided, on my own two feet. I figured you’d be pleased to hear this… as I am.

I'll always say I was very lucky, because I was, but I pushed for it too. The medical advice was that it would take many months to get back to walking again and then the best part of a year to (hopefully) recover fully. In the six weeks it took me to get back to this stage, I have progressed through a sizeable list of moving devices and walking aids. These included, but were not restricted to, a wheelchair, sara stedy, standing support walking frame, gutter walker frame, regular walker frame, two crutches, two sticks, one stick and, um, no stick at all. That latter event happened quite recently. After a weekend of quietly practising with one stick, I was encouraged by my Physio to ‘just walk’ and, after a disbelieving few initial steps, that’s just what I did. And I’ve been continuing to do it ever since.

I think, somewhere in my head, I had equated the act of walking unaided with my being fully repaired. That is patently not the case. Although I can manage most things, albeit slowly and for a limited period of time, the 24/7 ‘electrical buzzing’ in my hands and feet is a constant reminder that the myelin sheath covering my nerve fibres is still largely stripped off and will need time to regenerate. In the meantime, I'm like a second rate Marvel Superhero. Let’s call me 'Minor but Constant Electrical Shock Man'. My Achilles Heel is that I can only inflict it on myself.

Although it was very far from glamorous, the strong feeling is that the most glamorous part of my repair/recovery is now over. My return to being fully ambulatory had elements of a Rocky training montage about it. I worked as hard as I could, pushed, was regimented, made faces, and finished with a gratuitous flourish. Then, wonder of wonders, I walked away. 

Now as I fumble with my shirt buttons and try to walk discreetly, the impressive part is clearly over. My mission now is to be patient, do what I need to do, and let the healing continue.

This patience part will not be my forte. But I mustn’t forget that hospitals were not my forte either. Nor were immobility or total dependency. But I learned, first how do them and then how to get past them. I will learn how to do this patience thing too.

One of the challenges may be for me not to forget how bad it got for a little while there. I have a tendency to deflect and create diversions around negative things. I belittle them to deal with them. But I sense that a key part of this patience thing may be the holding on to the memories of those scary early parts of this thing. The cool feel of the hospital floor tiles on my cheek. The scrunching discomfort and bleakness of the hoist.

I could easily trivialise what happened, particularly given my lucky speed of recovery to date.

But this was not a trivial thing.

Is not a trivial thing.

Patience? Let’s do it.

A Suitable Case for Rehab

Apologies for being absent from the blog for the past five weeks or so. Apologies, too, for not being terribly responsive on my rather limited array of social media thingies.

As with most things in my life, there is a story.

I will try to tell it as succinctly as possible because it is actually physically hurting to type this out and my progress on it will be grindingly slow and riddled with mistakes.

“Jesus, Ken,” you might well say, “what the hell happened to you?”

Sit back, I’ll tell you and, as I said, I won’t take long.

It will be five weeks ago today, Sunday, that I carried the small aquarium style tank up the stairs in my friend’s house. The tank contained Tiny the Newt, who deserves a blog post all of his own someday. My friends were going on holidays and I enjoy calling around and looking after Tiny when they are gone. This time they were going for longer than usual so I had to learn how to clean out Tiny's tank too. I was carrying the tank back upstairs (less repetition, Ken, this typing stuff burns, remember?) when my legs started to feel heavy and sluggish. I announced I might be coming down with something and went home.

The next morning I drove to work, climbed the four flights of stairs to my office and immediately decided I wasn’t up to working. I went home again – something I had never done in my life before that day. I sat on the couch. I was convinced I was suffering from a post-flu fatigue. I’d had a good lick of it over the Christmas. A day of couch and Netflix would see me right.

The next day, Tuesday, I found myself using walls, chairs and tables to aid my progression around the house. Post-viral fatigue, I said. Couch and Netflix. You’ll be fine.

On Wednesday I offered to give Patricia a lift to yoga. Parking is tricky at the place. Walking might be a challenge but I could sure-as-shit drive a half a mile. I stepped out my front door, holding on to the jamb, and my right leg went from under me.

I went down.

“Hang on,” I said to Trish, “give me a second to get myself organised here. I’ll just get myself back up.”

But I couldn’t.

I couldn’t get myself back up.

Eventually, by some awkward trial and error, I made it to the couch.

Reading this, you’ll reckon that it was ambulance time for yours truly but I am nothing if not a stubborn old fuck. I promised to see the GP the next day. Post-viral fatigue, with a little wonky leg action thrown in. The GP will sort it in a jiffy.

The next day, Trish and I went to the doctor. She parked as close as she could to the surgery and I got inside somehow by hugging walls and window cills and hanging on to doors.

The doctor looked me over and said he had read an article just recently and he reckoned he might know what was wrong with me. In truth, Mr. Google and I had spent some time on the subject too and I also had a fair inkling what I had.

He said, “You need to go to The Accident and Emergency Department immediately. I think you have Guillain-Barré Syndrome.”

And sorry about the repetition, fingers, but I rather thought so too.

As we left his surgery, the kind doctor said, “I hope and pray that this does not prove to be too bad for you.” I agreed with him on that as well.

You can look up Guillain-Barré Syndrome if you want to know more about it. It hurts too much to type it out. Perhaps the most famous GBS sufferer is Sufjan Stevens. When I told my younger son I had it, he already knew a lot about it on account of Sufjan. It is important to say that outcomes are generally good and I do seem to be headed for a good recovery myself.

Fingers Crossed.

I was admitted to hospital and they found a bed for me. Several days, one CT, one MRI and one Lumbar Puncture later, the diagnosis was confirmed. Guillain-Barré. By then, the confirmation came as a considerable relief to me and my family. There were other things this could have been and none of them would be terribly high on anybody's wish list.

There was medical stuff that had to be done to help me and that took five days. During that time, the limited response I could still muster from my legs slipped away and my hands became ungainly and awkward and alive with electrical pins and needles. Which is why it still hurts to type this. I could stop, I know, but I’m a writer at heart and this writing-pain seems to make me feel happier and stronger. That’s writers for you.

After the medical stuff was done, I was rapidly dispatched to an excellent Rehab facility where I quickly started on my brand new hobby – learning how to walk again.

And that’s where I’m at now. Well almost. I’ve been allowed home for the weekend and should be home permanently quite soon. It turns out I’m quite a good student of walking and - no, God, strike that. Out of respect for the other people who have had this syndrome and who fought tooth and nail to walk again, I’ve been fucking lucky. I’ve had it easier than many of you had and I know it. I respect your battles, fellow GBS People. Make no mistake, I’ve had to work hard too, but perhaps not as hard as some of you.

So, anyway, that’s my excuse for missing some blog posts. Good, eh?

I have a way to go in my recovery but I’m on a good trajectory. I don’t need, want, or request anything from you except perhaps your continued friendship, which is highly valued.

I may write more about what it is like to be in hospital for the first time in fifty years. I may write about the excellent people who have treated me and looked after me. I may write about the fellow patients I have met.

But, for now, I think that's enough.

Fingers; rest.

A Little Modern Day Tortoise and Hare Action

On Friday, I was around and about in Tallaght in Dublin. Tallaght has quite a modern centre and, when I was done with my thing, I found myself in my car on a nice long stretch of bright and sparkly dual carriageway which ran along the periphery of the modern bit. The sign said I was allowed to do 60 kilometres per hour so I resolved to do 60. In a major glitch in normality, there was not another single car in sight, even though it was the middle of the day.

So I did 60.

Did I say there was no other cars on the road? I told a lie. There was another car. One other car. A smallish black thing. I pulled up behind it. It was doing 25 kilometres per hour. I gave it a minute. I reckoned the guy was getting up to speed and, any moment now, would cruise up to the allowed 60 and on we would go. I was wrong, the guy was on 25 and was staying on 25. The road ahead of him was clear for as far as the eye could see.

At least he was in the inside lane. I pulled out to the overtaking lane and I overtook him, getting myself back up to my beloved, and permitted, 60.

As I accelerated past him, I couldn’t help but dart a look over. I was expecting an old geezer, wedged in second gear, trundling along. But no. This was a youngish guy, skinny and weedy-looking laid back in his seat, cool and relaxed. If somebody were to play him in a movie, I would have voted for Steve Buscemi. As I drew out in front, the road once more stretched out in front. I stayed in the outside land as I had a right turn up the road a ways. I mumbled a few derogatory thoughts about the dude receding in my rear view mirror. Idiot, slow-coach, some more colourful ones which I will spare you. He got smaller and smaller in the mirror and he dropped from my thoughts in direct proportion to that receding.

On I went, all alone, free as a bird. Then, up ahead, there was a traffic light. It was green. As I approached, it was still green. Then, just as I was almost up to it, it turned first amber and then red. I stopped, all alone at the lights.

My rear view mirror became that desert scene from Laurence of Arabia. You know the one, where Omar Sharif rides out from the horizon. In my mirror, a black dot appeared and then commenced to grow and grow. The dot became a smallish black car which came on and came on at an unaltering 20 kilometres per hour. It drew up, still in the inside lane. It kept coming and kept coming. It didn’t accelerate at all; it didn’t slow down at all. And, just at it arrived at the red light, at precisely 20 KPH, the light changed to green and the car rolled on through without changing pace one single iota.

And I was left sitting.

Now the little black car accelerated. It quickly brought it’s speed up to 60 KPH and left me in its wake.

That’s my story.

I feel there’s a lesson to be learned from this. Something about running around like a headless chicken. Something about how knowledge is power. I don’t know, I’m still trying to figure out what it is.

I’ll let you know when I do.