Entry 9: Snow and battery failure

(photograph courtesy of DJ) 

It's been a bit of a strange week, and I've been really struggling with coming up with this week's blog. It's probably because I had loads of plans that then got cancelled, with me being stuck indoors for many a day due to loads of snow and ice, low temperatures and a rather healthy level of fear of catching pneumonia again. I've been watching on Facebook as people uploaded their photos of the fun and frolics they've been having, making snowmen and snow angels and throwing snowballs at one another. Whilst being joyful at not having to actually leave the house to do anything, I also felt like I'm literally watching life pass me by through my window, especially as I only had one visitor the entire time. It made me a lot more aware of people who really are stuck indoors all year round who don't have anyone around them to support, and no way of connecting with people. Particularly the elderly and frail. Unfortunately this only served to make me chomp at the bit even more to get out the house, so that I could go around and visit people that I was worried about when I myself should actually not be leaving the house.

Oh, I am just so sexy in those specs!

Fortunately, by the time I really did need to go out for yet another eye appointment, the snow had mostly melted. I still however, had to succumb to the rather degrading blanket across the knees as it was sleeting, and the temperature was around 0°. I felt like a right old bag! These days I'm quite accomplished at swallowing the lump of pride that rises in my throat when I have to deal with embarrassing/undignified situations that being quadriplegic leads to. I'm always aware of it, though. Some days I choke over it, and other days it goes down as easy as a Flake desert. But it's still there.

Getting out was really refreshing and I decided that now there was no snow I really should make more of an effort. After all, why should I let a bit of frozen water stop me from getting out and about? Other disabled people don't! I know paraplegics, whilst probably not exactly relishing the thought of wheeling through snow, still would be getting on with their life, and frankly, with the right sort of power chair, there's no need to quibble at a little bit of snow. I probably did my body and chest a disservice, and insisted on going out the following day to walk a friend's dog, and then pop in on someone else for a cup of tea. Alas, I had failed to take in to consideration the battery on my chair. Because I'd been indoors for five days on the slowest setting, I'd not needed to charge it up and therefore halfway through walking the dog it became very apparent that if we did not make a pit stop and charge me up, we would not be finishing the walk at all.

Unfortunately, even with the pitstop my chair battery did not survive the journey round and on the way back I slowly came to a grinding halt. I'm just glad I managed to cross the road first! So, another mini adventure, not dissimilar to the one mentioned in my previous blog, although this time I'm not stuck in mud – I'm simply out of power. I ended up having a very nice gentleman who could see I was in dire circumstances push me back the rest of the way… Luckily it was just round the corner and not too far. This power chair ain't exactly light! I can practically hear my mother groaning at my stupidity, 300 miles away… Sorry Mum!

Entry 8: Bingley, Briefs And Missing Snogging.

This is Bingley. I bought him as an eight week-old pup, who appeared at first very shy and very scared of the world around him. A bit like I was, following my accident I suppose. Bingley was brilliant. He totally bought me out of my shell as I attempted to bring him out of his… Although it wasn't long before he was pretty much in charge of the household!

Oh yes, Bingley ended up with all kinds of names as we helped him learn to house train, and teach him his basic skills and manners. I suppose the main thing I have to be grateful to Bingley for is getting me out of the house. You see, being Miss Independent I would go anywhere and do pretty much anything that I wanted, with very little thought to other people. I was pretty selfish (and still am I suppose). But following my accident. I was in a manual chair for a good year or more. In fact, thinking about it, it must have been two years or so I was in a manual chair where I could not go anywhere without another person pushing me. That meant I could not face the direction I wanted to, change my position in the room, change the room, or just pop out… It was so limiting it's hard to describe. Anyway, I kind of got into the groove of not being able to move myself around, and this habit stuck after I got my power chair. I was lacking in confidence too – I had not been outside on my own for over two years. Leaving the house was a huge deal. I discussed it with friends and family. I talked it through with a mentor from the Backup Trust. I discussed it with the psychologist at the spinal unit. But basically it was a case of my taking a deep breath and just doing it. I never did. Not until I got Bingley.

Somehow with him trotting by my side as I rolled down the street, I was no longer as self-conscious as I was. I was braver, and I felt more able to deal with roads and traffic and bumpy pavements. People had an excuse to stop and talk to me and I had to stop and talk to them, but actually I really enjoyed doing it. I was no longer "the girl in the wheelchair looking a bit strange," I was now  "the woman taking her dog for a walk, who happened to be in a wheelchair." It was just in my head. This major change in my perception of myself and who I am. It gave me a huge confidence boost – I am still a woman with interests, issues, ideas, and intrigues. I'm still as much a person as I was before my accident. I simply now have an extra dimension in my life that embodies being disabled. It is amazing how much being disabled takes over everything else. It really does impact on every single area of your life, which is why I'd managed to somehow forget that I'm a person, I am not the disability.

another digging expedition!

We had many adventures, Bingley and I. There was the incident(s) where we got completely stuck in the mud… I should have known better. It had been raining for days! However off we trotted to the park and I don't know why but of all the parks available I'd chosen the one where the concrete path runs out and you have to go around the steps, up and over the green hill slope. So it's about 6:30 PM, its grey and overcast, I can feel spots of rain coming down. Bingley is running alongside me happy as Larry, until thwack!! My front castors stuck solid in mud. I nearly garrotted Bingley as he strangled himself on his collar and lead so unexpected a stop did we come to. The back wheels dug right on in and spun round and round as I tried to get us out to no avail. Bingley thought it was amazing – after a mud shower he promptly jumped up on the side of my chair, licking my hand then buried head, front paws and belly in the mud in a digging frenzy. The park was empty. I had no way of contacting my PA. She wasn't even sure of which Park I'd gone to. I looked around for help, but there was nobody there in the coming gloom. That was when the panic set in. Scream at the top of my voice was an understatement. I yelled and I hollered. I cried help, I cried hello, I cried girl in wheelchair … Thinking about it I was very lucky there was no dodgy bloke lurking about in the bushes, which frankly in Liverpool one should really expect rather than take as an exception. Anyway, a bloke did come to my rescue, but only after enough time had passed for me to picture the newspapers: Police Hours Wasted by Daft Quad Stuck in Mud. In my mind the police had out their dogs, even the helicopter with its heatseeking camera… Though it wouldn't work of course, because my body temperature would have dropped from being outside so long. As I was saying, a guy walking his own dog came along and was chivalrous enough to help me out the mud. Boy, was I relieved to see him!

My PA, however, was less happy to see me and Bingley as we were both chocca with mud and she had the pleasant task of cleaning is both up *cue evil laugh… mwah ha ha!                      

And then there's the time when Bingley stole my knickers…

He looks so sweet and innocent, doesn't he? Butter would not melt. It's all just a ruse to get away with as much trouble as possible! My PA had hung up my washing on the clothes maiden. Unfortunately, she had decided that the lower levels could be used for my delicates, and this was far too enticing a treat for Bingley. He sneaked up the corridor, gingerly took a pair of knickers when nobody was looking and then bolted hell for leather back down the corridor, through the lounge past my wheelchair and out into the garden.

It was so funny that I couldn't stop laughing. At the end of my garden was this gorgeous little creature, the naughtiest imp I had come across with a pair of my briefs between his jaws – I wouldn't have minded except they were my Supergirl pants! Naturally I had to send a PA to rescue them from him.

Underwear is frankly a whole new ballgame when you become disabled. Especially if your upper body has no muscle tone/control left. You want to buy something that fits, but you also have to take into account the fact that you cannot feel it once you're wearing it. You therefore do not know if anything is digging in where it shouldn't be, and you don't know if anything has fallen out that needs to be kept cupped. And of course there is the ongoing decision – do you buy something practical or something you don't mind being seen should you end up in hospital surrounded by male doctors… Why can't there be something both practical and attractive? Why must I always end up at M&S, instead of Agent Provocateur?

And then that begs the question why should I bother worrying what my underwear looks like? The only people who get to see it are my PAs, the occasional paramedics and those unfortunate enough to come around on wash day. I guess the reason my brain is wandering along these lines today is because frankly, just because a person is paralysed doesn't mean that they have their sensual side switched off. Dammit, I miss snogging! My close friends will probably be groaning inwardly because they've heard that sentence before many a time, even from before my accident! The point I guess I'm making here is that just because I'm paralysed, it doesn't mean that fundamental part of being human has gone from me. I think I can speak for pretty much the whole of the disabled community here in saying that just because we are disabled, it does not mean we no longer crave intimacy. If anything, we may need it more than before our injury because so many people withdraw from us. And let's face it, it's always nice when somebody fancies you!

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Entry 7: Eyeballs

Eyeballs – either you can touch them or you can't. For many a year I was unable to do this… I started wearing glasses when I was 10 and over the years have steadily become increasingly blind (sorry, I mean shortsighted). I literally cannot see past the end of my nose, though I hope metaphorically I can see much further than that. In my 20s I attempted several times to wear contact lenses, and failed. Overcoming that completely natural and overwhelmingly strong reaction of stopping anything not only touching my eye, but putting something in it was very difficult for me. Basically, I was one of those people who could not touch an eyeball!

My glasses became like a piece of armour. I hid behind them, knowing (or at least believing in my head) that I was less attractive because of them. If the eyes are a window into the soul then my glasses were a shield hiding my soul away. My glasses were quite a feature of mine, that even after I had stopped wearing them for a good year or so, when an acquaintance designed a graphic avatar for me, he made it with me wearing glasses. When an elderly family relative greeted me at a function after not seeing me for many years, she had no idea who I was. When I told her "I'm your grandniece – it's Helen!" Her reply was "oh, I didn't recognise you; I was looking for your glasses."

Needless to say then, finally conquering the fear of touching my eyeballs and overcoming the involuntary reaction that stopped anything going anywhere near my eyes was a big deal for me. Starting to wear contact lenses meant that I was no longer hiding. My soul was there for all to see, if you looked deep enough into my eyes.

Any person wearing contacts knows that you should never leave them in longer than 8 to 12 hours. You are told that because of germs breeding on the contact lens the risk of infection is great. You run the risk of causing Keratitis (an infection of the cornea that could end up in a cornea transplant; herpes, bacteria and fungus can all cause this (http://www.geteyesmart.org). I was therefore fastidious about washing my hands and making sure I took them out at night. When I had my accident in Chile, they got left in for four straight days. When they finally realised I had contacts in my eyes, they did take them out… And I got my glasses back. I went from being able to see everything, to only being able to see through the little window of lens provided by the frame. Once I returned to Britain I insisted I would start wearing my contacts again, much to the disapproval of my parents. Hospitals are places that germs run riot. And now I would need to have somebody else putting in the contacts and taking them out. If I think about it, this was the very first thing I insisted on doing/achieving when everyone around me was saying it was impossible. It took a while, but after several weeks in the ITU of having to constantly ask somebody to push my glasses back up my nose (at one point we Sellotaped them across the bridge of my nose It got so bad), I insisted that I wore my contact lenses again. The nurses in the unit were fantastic – and they were all for touching eyeballs!

Now I am able to train up every new PA that I have to put in contact lenses and take them out again. However, in the two years I've been out of the unit I think only one of the girls I've worked with actually knew how to use them from wearing them herself. Everybody else simply had to be willing and able to touch my eyeballs! I happen to know that of all the jobs that the PA has to do, dealing with my contact lenses is THE most hated job. As a result, I end up leaving them in. More often than not, they get left in for almost a week… Not wanting to deal with their reluctance and having to brace myself to have the trust in this person to basically put their fingers in my eye.

Yesterday I went to the opticians for a full checkup/MOT of my eyes. I've recently been having trouble seeing my laptop screen, and focusing on text at a distance and also waking up with headaches over my eyes. The optician immediately told me I had an eye infection beginning and I was not to wear my contact lenses for five days. We had fortunately caught it in time. He didn't name it, but perhaps it was Keratitis. I reckon that as this is my first ever eye infection since I started wearing contacts, and certainly the first trouble I've had since, ahem, I've been leaving them in for days at a time that I've been very lucky indeed.

Entry 6: Behaving Badly

Smoking, picking your nose, drinking too much, breaking wind from either end in public, driving over the speed limit, biting your nails, not washing your hands after the toilet (yes, you know who you are and there's more than one of you!) – We all have our own little bad habits. Things that we have either chosen to take up consciously, such as eating too much chocolate or never really noticed we were doing such as drumming fingers on any available surface.

I had many a bad habit. Over the years I've had bad habits that have come and gone (yes, I will admit that I used to smoke *Shocked face*), and I had ones that stayed with me right from childhood such as biting the skin around my nails… Not biting my nails you notice, which would of course be the normal habit to form, but the skin around them. I have wondered what a psychologist might make of that at times! There have been times when I have drunk too much. A glass of wine after work, becoming a bottle… It became a habit to a point where I thought that I could see the very faint line between habit and dependency. Ironically enough, I was saved from that bad habit by getting a job in a pub!

Quite often we don't even realise we are doing something habitually, and it is only when we are not able to satisfy our unconscious need that we suddenly realise we even have a habit. For instance, now that I have to consciously ask other people to do something for me I never realised how much I procrastinate. I mean, I knew I always had a lazy bone somewhere but I always kind of thought it might be a small one like in my hand or foot, and I always knew I dreaded having to deal with slightly scary yet important things of which I would put off till the last possible moment. I like to adopt the "mañana philosophy" of Peruvians whereby if something can be done tomorrow instead of today, then let it wait until tomorrow. Is that a bad habit? Or the adoption of a culture style from my many travellings? Okay, okay, perhaps it is not the most efficient use of time…

I know of a bloke who lives in Southport, who became a high-level tetraplegic following a virus attacking his spinal cord. He was a typical scally. For those who do not understand Scouse – a scally is a person one might observe in Shameless (that highly educational and informative TV programme that renders travelling unnecessary to observe another culture style). Don't get me wrong, I'm fairly certain he'd be proud to wear the label. :-) I mention him because he would have had pretty much all of the above bad habits that are mentioned at the opening of this blog, along with a few that my innocent mind would never be able to come up with. He smoked. He drank. He dabbled in drugs. His language was more colourful than a rainbow. However, now he can no longer hold a cigarette, let alone light one. If he wants to drink too much, he must plan ahead. First, making sure that either a) someone will be on hand to administer an intermittent catheter or b) have an indwelling catheter put in for the evening and attached to a leg bag making drinking to excess non-lifethreatening^#1 (in the short term at least). In many ways it could be observed that because of his paralysis his quality of life/health have actually improved. So, do we say hooray for the SCI?? That is out with the jury for me…

So then, how can I perform bad habits when I am most consciously aware of them, and what's worse would have to ask another human being to either do it for me or to me? I have to admit that my intake of chocolate, dark, milk and white alike has remained fairly consistent with the level consumed prior my accident. I did however experience the embarrassment of asking my PA to come back and then come back again and then I would call her yet again for more and evermore pieces of chocolate. I kind of figured that I'd been through far more embarrassing situations to really give a toss what the PA thought. She was leaving in three days anyway…

The worst is picking my nose. There's nothing more annoying in the world then a bogey you just can't reach. Or in my case,  it's a bogey that I can feel is up there and constantly making me twitch my nose. I end up going through a bit of a process – 1. Does the bogey need to be imminently removed or has it yet to make its way towards the exit doors? 2. If the bogey must be removed imminently, can it wait until I have finished what I'm doing/until bed/until I can be bothered to call the PA? 3. Does the PA have the required amount of toilet paper necessary to complete the upcoming task? Nose Analysis undertaken to determine necessary amount, then after initial blow, Reassess. 4. Is it necessary for the PA to initiate the Shadow Finger Technique, because the bogey is clinging on like artex to a ceiling? 5. Although I'm totally grossed out by the entire process, insist on looking at what said process produced… All that hard work and effort must've been damn worth it!

I challenge all the able bodied people out there reading this right now, next time you need to blow your nose get someone else to do it for you. It makes for an excellent bonding experience…

I knew I always

The reason I started to think about bad habits was because I was staring at my fingers the other day, and noticed how lovely and clean and neat they were, instead of red raw with little bits sticking out that I just wanted to nibble on. In the past I would chew on them both consciously and unconsciously, born out of the nervousness that self-doubt and low self-worth can bring. For years and years people told me to stop biting. It was not unknown for me to draw blood. The reason a habit is called a bad one is because it is an undesirable behaviour pattern. Don't get me wrong, I did not win the war on biting my fingers and manage to stop. No, this bad habit has been conquered by my SCI, by making it impossible. Whilst I'm genuinely happy that finally, after 30 years of hideous hands, I can be bold enough to say "actually I might go with the pillar-box red nail varnish," I still think the price was too high to pay. So I'm going to throw it out there and ask what bad habits do you have? What is the one thing people are forever telling you to stop doing? Is there something that you would give anything to have the willpower to be able to stop?

Well, I gave control over my body, the ability to feel warmth on my skin and I'll never be able to brush my own hair again. I gave my dignity, privacy and my independence. But I have nice fingers… So long as you don't count the claw-like shapes that they make now that my tendons are tightening up…

If you have a bad habit, and you really do want to stop – then get help and do it. But if your bad habits are fun… And that's all your bad habits are at the end of the day (yes, I have a parent who will belch at both ends in public and smile whilst doing it. It's not my mother.) Then carry on behaving badly because we all need to laugh more anyway!

#1 – and overfull bladder can lead to Autonomic Dysreflexia. This is the body's way of letting you know something is wrong, but basically your blood pressure gets higher and higher. Eventually, this can kill you if you're not careful. AD only occurs in people with high level SCI's.

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