Pride Goes Before A Fall: What Neuropathy Can Do To Your Social Mobility

Today's post from neuropathyandhiv.blogspot.com (see link below) takes a look at the reality of having neuropathy and having to be reliant on 'mobility aids' to get around. It  follows on from yesterday's post and offers some thoughts from the moderator of this blog. Over the years, neuropathy can reduce your personal freedom to such an extent that remaining a social animal becomes more and more difficult. You may need a walking stick, or a rollator, or a wheelchair, just to be able to interact with the public (and do the shopping!). This article tries to take a humorous look at the situation you may find yourself in with severe nerve damage but behind the sarcasm and cynicism lies a sad reality that can bring us right down if we don't watch out.

Pride Goes Before A Fall: What Neuropathy Can Do To Your Social Mobility
Dave R Modified 7th September 2018

I wasn’t in any way prepared for what it did to me when I first stepped outside the house with a walking stick? Who knew you could immediately add ten years to your life by leaving the house with wood in your hand! Okay, paranoid much? Not really; just try it and see how people look at you. Sounds silly but it’s true. I instantly became a different person, with another label around my neck and had to adapt to being judged accordingly. Everything is changed by that damned stick and I suddenly began to realise what it means to be less able!

At first, I genuinely thought people were looking out of sympathy; until I looked at that reflection in a car window, of a sad, old specimen hobbling along the street and wondered who it was. I know, I’ll be in all sorts of trouble for making light of necessity and I do realise it must be ten times worse, if you’re in a wheelchair. I’m not mocking it, I’m just saying how it made me feel and how I’m having difficulty accepting the inevitable. Although at the moment, I leave the stick at home if it’s humanly possible, I have that sinking feeling that this is just the beginning. This is apparently what neuropathy can do to you; I’d read it and heard about it from other people but when it happens to you, you either react stoically and get on with it, or like me, curl up in a ball and mumble insanely to yourself in the corner.

Ho hum; they were first reactions and it is getting better but I still hate the dependence and the way it changes your street cred. Actually there wasn’t really a choice in the end. During the past two years, I’ve stumbled countless times and fallen twice; badly enough to break bones in both hands and all because the neuropathy fucks with your brain and sends out wrong signals from your feet for fun. I thought about getting one of those 45km per hour, tin cans to drive around in (like they’re in any way cool!) but am worried that my feat will still betray me and I’ll inadvertently hurtle into some stray cat on the street. Apart from that, the pills I take to suppress the pain probably fall under the highest category in the war on drugs and my insurance company may not buy the story that I didn’t realise I couldn’t drive any sort of vehicle on the public highway!

The problem is, the alternative means walking in pain and even then not very far and failing that, making the TV and computer my new best friends. So to avoid peeking longingly out at the world from behind the geraniums and the net curtains, I have to get off my ass and go out into the world. In my case, that means taking a walking stick with me, to at least fool my brain into thinking that there’s enough support to carry me along without tripping over imaginary cracks in the paving. It’s like having a third leg, though not the sort I always wanted to be known for! It’s still a mental barrier though. I know it’s essential on my bad days but I still hate it with a vengeance and grind my teeth at my perceived loss of pride. It’s all between the ears of course and people aren’t looking at me as if I’ve just landed from Mars but that’s little consolation...yet.

Actually people on the street fall into two groups: the minority go out of their way to let you pass because they realise that you’re carrying a walking stick for a reason. However, the vast majority walk through you as if you weren’t there and God help you if you protest! In Amsterdam, the pedestrian comes way behind trams, cars, scooters, bikes, dogs and kids in the pecking order on the street. Bicycles are easily the worst because they think they have the God-given right to ride on the pavement if the mood takes them.

There is one particular sort of bike in my area, which has its parallel in the Chieftain tank and is just as deadly. It’s called a ‘Bakfiets’ and is basically a normal pushbike with panniers at the side; a grid with straps for packages at the back and a bloody great carriage for kids, dogs and shopping (often all at once) at the front. It’s generally driven by young mothers with two screaming brats in the carriage and a cell phone surgically attached to her ear. Our area is infested with them and they treat pavements as their own private race tracks as they rush their kids’ from their ADHD therapy sessions to the shops and back. The fact that they can carry on intense phone conversations at the same time baffles me but apparently it’s called ‘multi-tasking’!

On my second day out with the stick, I left the supermarket with shopping bag in my left hand and the stick in the right. The street was busy and bikes were parked everywhere as usual. I nearly had a heart attack as I turned the corner to be confronted with one of these overloaded ‘cycle tanks’ hurtling towards me at speed. I had the wits to stand my ground because if I’d done anything else, I’d be in the casualty unit again. The bike screeched to a halt; the kids in the carriage started screaming (probably from shock at the narrow escape) and the mother launched into the sort of tirade that would make sailors blush. Now when I’m angry, my Dutch doesn’t come as easily as it normally does, so I sort of spluttered a protest, pointed to the walking stick and put on the sort of eyes that made Antonio Banderas so adorable as Puss, in Shrek. It was to no avail, the harridan went on haranguing me about being in the way, until bystanders thankfully stepped in and told her she should be more responsible or words to that effect. As I said, I hate that bloody stick but will need to find a way to use it effectively and negotiate the various obstacles that present themselves on the streets of Amsterdam. Since the ‘bakfiets’ incident, I’ve started noticing how less-able people in general are treated in shops and on the streets and it’s a shock! People with walkers and Zimmer frames, are regularly scowled at, shoved; treated with impatience and ‘tutted’ at roundly. People in motorised wheelchairs come off much worse in terms of verbal abuse but at least they’ve got armour on their side; until of course, they venture onto the road or cycle path with their relatively slow moving vehicles, and are treated by youths on scooters as a challenge and fair game for a, who-dares-wins competition for right of way. There’s one young, disabled guy locally, who revs up his wheelchair to Mach 1 and just goes for it, scattering people, bikes, dogs and shopping carts, left, right and centre. He’s psychotic of course but I sort of get where he’s coming from.So this is a small plea for a little more understanding for the less able on the street. Even noticing we exist is a start and a little kindness goes a very long way and is really appreciated. I hope to be able to use my stick (and only my stick) for some considerable time yet but I’m not going to be taking much more crap when all I’m trying to do is get from A to B without falling. Watch out for ninja seniors with killer Zimmers, or turbo grannies in motorised wheelchairs; one day the worm will turn!

http://neuropathyandhiv.blogspot.com/2018/09/pride-goes-before-fall-what-neuropathy.html#.W5OOXPZ9iUk