In Search of the Swagger

You might do something for me. It’s not terribly hard.

The next time you go for a walk, even if it’s just one of those short ones from A to B, stop for a second and congratulate yourself on how brilliant you are. I mean, look at you. Nothing less than balletic is what I would say. A masterclass in balance and forward momentum.

As for me, (thanks for asking), I am now walking pretty well and covering quite a bit of Castlebar territory every day. I walk to the library and practice going up and down their stairs. I also walk around the Mall, which is something I promised myself I would do again, after the hurly burly was done.

One kind neighbour, who must have spotted me on my excursions, told Trish that I had got my ‘swagger’ back. That was kind and I appreciate it a lot. But the truth is, I haven’t quite retrieved my swagger yet. But I’m working on it. I walk quite well… mostly... but the walk retains a studied, 'relearned' quality and is not quite second nature yet. If I meet somebody who I know and I walk along with them for a while, the conversation causes my stride-concentration to wane and the quality of the walking wanes a bit with it. I can walk pretty darned good and for a good long time. I just have to concentrate on it a little bit. When I’m by myself, I often quietly berate myself. “Walk right, you fucker,” I hiss, “stop fucking around.”

Today (Saturday), I dropped in on Anthony in the butcher’s shop, who shook my hand and sold me some stewing steak. Then I ambled along the river to Tesco and got the makings of a severe chilli. ‘Amble’ is good. When I am concentrating well, I can carry off a convincing amble, I reckon.

I think I’ve come to terms with the fact that I’m not all-better yet. I’m doing pretty great, that’s for sure, but, for example, while preparing my severe chilli, I found I couldn’t get the tin opener to work nor make the ring pulls on other tins bow to my will. (Don't judge me harshly on all those tins, there's lots of fresh stuff in my seevere chilli too, just kidney beans and tomatoes for the tins.) Time, and patience, that’s what’s needed. And a gently pushing on the door of the things I cannot yet do very well. An everyday ‘not settling’ for where I am at, while not pressing too far forward either. 

It’s a balancing act… a bit like the walking.

Another aspect of this ‘getting better’ lark is how some of the details of my respective stays in hospital and rehab seem to be gently fading away. I want to hold on to them, as much as I can, because they help me appreciate how fucking amazing my life is. On the other hand, I don’t think I can write all those things out, as that’s too much work and also many of the things that happened involve other people whose privacy I wouldn't want to mess with.

So, what I’m going to do is I’m going to allow myself a few keywords here. They may serve as an ‘aide memoir’ to me when I look back on this post in years to come (which is something I do). Each word tells a story, to me at least, and I don’t want to forget any of them.

So…

The Fist Fight. The Man Who Died, The Lady Who Came to Bed, The Man with the Three AM Toast (I’ll never forget that), The Tiktok Man, The Traditional Music Session, Brent, The ‘Write Down That He Is Afraid to Walk’ Man, Prune Juice, The Unassisted Walker, Delia, The Tuning Fork, Stan Laurel Reflexes, Cleetus’ High Fives, ‘Vincent’, If It’s Good Enough for The Baby, It’s Good Enough for Me, Naoise, Madeira Cake, The Expanding Room, The American Invasion of ‘Medical B’, Shane’s Playlist, MC’s AI Documentary, Peaceful Piano – American Songbook, ‘Tiptoes’, ‘Heels’, ‘You’re Hardly Using It At All… Put It Down,’ Porridge, How Uncomfortable a Wheelchair Gets, Alternating on Crutches, How The End of the Cycling Programme Looked Like a Crematorium, The Teeny Tiny Immunoglobin Bottle’…

Enough for now. Each of these things tells me a story. Maybe I'll recall them when I reread this.

For now, though, it’s time to go out in search of that swagger again.

Walk right, you little shit! 

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.