A warning to all people looking for work.

Yesterday, I was happy to receive an e-mail.  Yes, I know that Gmail apparently crashed... and that wasn't why I was happy.

The e-mail was a job offer:

Good day Mr ......,

We are delighted to formally offer you an employment to work with us in our Company. We have picked out your resume from totaljobs.com.

The position is subjected to the following terms and conditions:
• Compensation: Will be paid in monthly installments of 1,500 pounds, subject to deductions for taxes and withholdings as required by law and the company policies.
• 8 % Commission.
• Benefits:
- Formal training via our personal supervisor training program
- Management growth opportunities
- Health care and retirement plan
- Solid technology support
- Paid vacation
- Paid Sick leave
• Non-Compete Agreement: non-compete agreement must be signed prior to start.
• Terminating the employment: employment is at-will basis. Both parties can terminate the relationship with a notice of 2 weeks at any time.

If you are in agreement with the above outline, please let me know. This offer is in effect for 1 week.

Please review this offer of employment, if you have any queries about these please do not hesitate to contact contact us at office.hr.simon@gmail.com.

I had to read it a couple of times.  There were no attachments, and no other details.

I was meeting a jobs adviser later that day and I forwarded the e-mail onto him, and when I saw him, he told me that it was a scam, and not only that, but it was quite common.  People are desperate for jobs these days, and so they'd probably be as elated as I was to receive an e-mail with a job offer.

So things to look out for.

No details with regards to the job itself.
No company details.
No company e-mail, which will be formal and will probably have a company logo.
Use of the word "resume".  In the UK we prefer "curriculum vitae" or "CV"
Use of the word "vacation".  We might have annual leave or holiday pay.

If this is apparently quite common, why aren't online job agencies making sure that the companies are legitimate???  I did forward this to totaljobs.com and will see what happens.  But I deliberately included the senders e-mail so that hopefully you're aware if you get something similar.

Happy and safe job-hunting.

Joe.

A Change of Direction.

I couldn't write this blog before Christmas.  Actually, I couldn't write at all before Christmas.

Last year (2013) wasn't a good year for me.  One emergency operation in March derailed me (not long after I'd celebrated my 40th birthday).  It took another one in August to put me back on track.  And then it happened.

    I was made redundant.

    I worked for an organisation for 12 years, over a quarter of my life. I worked for a disability organisation whose primary aim is to promote independent living, and I enjoyed my job.  Being diabled myself was a handy bonus because I could be all empathic and mean it.  Plus I loved working with people.  But like every place of work, the word "restructure" means job losses.  I'd been through two before and "survived" (if you can call it that).  And we're not all like Keannu Reeves, we can't always dodge bullets.  The third restructure hit me hard.  The Council had cut funding which meant that there were going to be severe changes in the organisation.  Which meant that my job, which I loved, was no more. 

    Losing a job is like being pushed out of a plane at 40,000 feet (however high that is).  You go into freefall.  You want to scream but you look around and you find that there are lots of planes up there and lots of people being pushed out of them.  And the horror on their faces matches yours: Oh god, what am I going to do now???

    When you're in employment, everybody says what a good thing a redundancy package is.  Its money and its tax free.  Well... yes.  But its not a job and that money will run out.  If you're smart, you'll try and save what have because when that rainy day comes (and we've had quite a few of them) you'll need it.  Being in work puts a person on the side of Right. You have a status and You're Making A Positive Contribution To Society.  The media and politicians all over are quite happy saying that they working for "the hard working people".  There is a whole stigma attached to "people who don't work".  It terrified me that I was not one of those people any more.  Did that mean that I was not one of those people that David Cameron was going to help?

    What people don't talk about is the emotional effect that losing your job can have.  It's like a tidal wave, lifting a person up, taking them away by force from everything that they were comfortable with and dropping them in the middle of nowhere.  And unless it happens to you, you don't know what it feels like.

    For me the most difficult thing I found was that I couldn't write.  We're not talking about CV's or application forms here.  Those I wrote.  In fact I made looking for work a full time job with added hours for evenings and weekends.  The new Birmingam Central Library became my second home.  I was making my sandwiches the night before as normal and taking a thermos of coffee in the morning.  The old Central Library used to be my second home but its becoming a fading memory, like my old job.

    When you start looking for work, you have to think, I'll do anything (within reason and within my capabilities.)  I can't walk a tightrope in my wheelchair.  I can't walk two parallel tightropes because I'm afraid of heights.  But I will Do Something.

    But I couldn't write.      Writing is a passion for me.  Actually, well its not.  Living in worlds inside my head are a passion as are getting them down on paper.  But I had to change that channel, because until I'd found a job I wasn't going to be comfortable with using my keyboard for anything other than writing application forms.  I wanted to write, but I couldn't find it in my heart to think about writing. 

    Every day presented a new challenge because the current climate tells of more people going into free fall.  And those are the people that I go up against to find work.  These aren't good times that we live in.  I found that there is a paradox with looking for work, because whilst employers say that they "are looking for people with skills in", what they're really saying is that "they want people who already have experience of doing ...".  And you can't get experience in an area without somebody giving you a job.

    But this story will hopefully end optimistically.  Because just before Christmas, just before Christmas... I was offered a job.  So the next I write, after this, will be my letter of acceptance.

    And then maybe 2014 will see my life and my writing move in a different direction.

    I hope that your lives have a positive start to the new year as well.

    Take care

    Joe.

What books are you reading?

I'm a nosey sod.  There, I've said it.

It's true.  Whenever I see somebody reading a book, I've got to ask, what are they reading and why?

It's easy to know that if they're using the old style paperback book.  But e-readers have come in to our world.  And despite me swearing that I'd never use one, I found myself wanting to buy one last year purely because there were a couple of books that I wanted to buy and I didn't want wrist-ache with holding the heavy books.

 Neal Stephenson's Reamde was one.  At over 1000 pages, the guy knows how to tell a story.

E-readers have revolutionised the way reader's read.  And equally the way writer's write.  And get published.  Some publish their first books for free and then charge a little for subsequent novels.   Self publishing is a big thing on Amazaon UK and lots of new writers are blogging and tweeting about how to do it.  

But what have you read recently?  And what has influenced your choice?

There was controversy about six months as a couple of authors were found to be writing their own reviews.  I suppose that's one way of self-promotion!  
 
For me, I love books written in the first person.  Add some thrills, a bit of science fiction and a sense of humour and I'm sold.
 
 After numerous false starts I've finally got into the Harry Dresden series by Jim Butcher.  Think Harry Potter for adults.  Definitely not for children.  Read the later ones in the series from the library and bought the earlier ones in the series straight to my Kindle.

Oh, and two about writing: Goals, Motivation and Conflict by Debra Dixon, and The Positively Productive Writer by Simon Whaley.  Both were recommended by Nell Dixon, and they're changing the way that I think and plan my writing.

Hopefully the fruits of which you'll see sometime in the near future.

Take care

Joe

The Sound of (Almost) Silence.

It's very noisy in my head. Almost like an airport, a train station or a an accident and emergency ward (yep, let's be topical!). 

Planes or trains or unwell people are like thoughts that fly through my head.  Actually forget the first two metaphors, because the station and the airports (usually and hopefully) know exactly when said train or said plane is going to arrive.  There are sophisticated procedures for helping them arrive and letting them go.

The A and E department, however is, yep, more like the thoughts in my head.

Unexpected.

But recently, the thoughts in my head are taking up more of my head space.  And the reason for this is that I have slowly having a build up of ear wax.  And by Friday morning, the final jigsaw piece was put into place.

It had to be Friday 13th.  And I'm not superstitious.

And I was really struggling to hear. But before I go on, let me make one thing clear:

I am not.  Deaf.

Being Deaf implies the complete absence of sound.  I can hear – just very faintly.  It's as if the hearing switch in my head has been turned to 1.5 (if 5 was normal and 10 was deafening).  I can just about hear you.  If you were talking to me.  If you were facing me.  If you are in the same room as me.  Or on my mobile phone - I have to have my volume turned up, but yep, I can hear you.  (Then it doesn't matter which way you are facing.).

Now, in some respects this alters my perceptions, because it has guided me to pay more attention to people's body language – so I've noticed more than I would if I could hear normally.  So I've been more aware of that 90% of communication that we do.  All of the non-verbal stuff.  

And to be fair, I've noticed things about people, that I don't think that I would've picked up on before.  For instance, when watching a conversation between two people, I've observed how the second person wasn't listening to what the first person was saying.  They just wanted to get their point across.

But it also makes me aware of how much we rely on our senses, and how much we - or at least I – have taken them for granted.

I used to work with a group of visually impaired people to look at the technological aids that are available to help them have a better quality of life.  And the group went well.  Mostly.  (That would be another story).

But as somebody who makes a career out of knowing about equipment to help people have a better quality of life, I also know that there are hearing aids and neck loop systems, etc, for people who have hearing loss (I've been told that that is term that is used now).

But this for me, is (hopefully) a temporary issue, one that hope the ear drops prescribed by my GP will help.  If they don't then I'll have to go down the syringing route.  Which (not being ironic) sounds scary.
 
It seems that every day brings me a fresh challenge.  This is just another one of those.

Maybe its a Friday the 13th kind of thing.

And I'm still not superstitious.

Take care

Joe

Its.... ALIVE!!!!!!

After nearly 6 months without having a Intrathecal Baclofen implant. I have recently had one.... implanted.  Technical I am a cyborg.  Again.

That sounds very science-fiction-y.  I am reborn.  Sort of.

Readers to the previous entries will know that I have had an implant for the past 22 years - changed every 4-6 years of course (batteries don't last that long).  Then in March, not long after my 40th Birthday, I was rushed to hospital with an infection and the implant was removed under emergency surgery.  On a Sunday.  That's how much of an emergency it was.

From that point in March I was concerned to hear that I would not be "re-implanted" until late August/September (well, I was told that, I think in May).  Simply because the doctors wanted to be sure that the infection was gone before I underwent more surgery.

My concern was... how will I cope?  After having Baclofen delivered intrathecally (inside the body, straight to where it was needed) for what amounts for over half my life, how would I live without it?

Well, obviously I survived, as I wouldn't be here writing this blog. (and it is me writing the blog - NOT the machine inside me).  Although the computer inside me might disagree.

But I'm not Frankenstein's monster, despite the doctors using staples instead of sewing me up.  I'm sure that they were sterilised first.  They didn't just run back to the office and grab the stapler from the desk.  Surely not.

Having an implant after a break of 5 months has changed my perspective on having it.  After months of counting down to the surgery, and then having the surgery, I realised that although it was a difficult process, I did cope, although it wasn't without its challenges.

The whole reason for having a Baclofen implant is to improve the Quality of Life of a person.

Mine wasn't lost when the implant was removed in March, but life did certainly have more challenges.  Relying upon oral medication was one of the main challenges.  Dealing with the effects of taking oral medication was another.  But I have to say that as the time grew closer
towards having the implant, I learned to adapt, even cope without it.  People with disabilities - indeed all people - (humans) are very good at adapting.

But whilst I was adapting to life without an implant, I wasn't quite the same person that I had been before.  Taking the Baclofen medication orally meant that I would have to be ready for the wave of inevitable fatigue that comes with taking the medication.  Therefore I timed the dosages so that it would impact on my ability to drive.  But yes, I admit it did slow me down at work.  But I felt that being at work, I was more productive than not being there.

Now I have a new implant that wave of fatigue no longer hits me, as the dosage is computer controlled and continuous.  And very low, because a lot isn't needed at the moment.  But a dosage given internally is never the same as the strength of oral dosage, otherwise I probably wouldn't be able to feel my legs!  

But for a while it was a strange feeling to have an implant again.  Not just on the stretching of my skin, but also the weight of the implant felt strange and heavy.  Like something was pressing on my stomach.  Which it now is.  Plus I have to face the face that there is a a slight raised protrusion on the right side of my stomach, which obviously is more visible when I take my clothes off.

Thankfully I don't do that in public very often.

At the moment, my level of physical activity is low, so my level of spasticity is controlled relatively easily with a low dosage, to the point that the implant needing to be refilled will be nearly 6 months away.  As I become more active and start doing silly things like going back to work, that will change.

 
 Whilst there are risks to any surgery, the benefits have paid off and I am part man, part machine.  Again.  My wholehearted gratitude goes to the relevant NHS staff.  They know who they are.

Now I am home, I can spend lots of time reading the whole series of Harry Dresden novels by Jim Butcher.  They  are wonderful reading.  Exciting, intriguing and very funny.

And I want to think about where the Portal is going (I need to revive that).  And work on changing the way that I write so that it is more structured and less off-the-cuff.  Boy that is a challenge!  But a nice one.  Not half as painful.

Ex-Borg

I'm not like you.




I was created by a race called The Borg.  They slipped into the planet's atmosphere, created me with a unique set of circumstances and left me here.


I am different.  I was born with a disability.  From the second that I was born my life became very different to yours.

My disability (because I obviously went to a shop and bought it) is called Cerebral Palsy.  It happens at birth and once you have it, you have it for life, not just for Christmas.  The important thing for you to know is that you can't catch it.  Its not contagious.  I'll repeat that for all you frightened people out there: its not contagious.  Not contagious in any way.  Check with the Government if you don't believe me.  Or don't because mostly they're useless.  Check with your GP if you really have concerns.  The easier option is to believe me.  Because you know that I'll always tell you The Truth.  I'm that kinda guy. 

Cerebral Palsy means that the neural pathways in our brain don't make the same connections that yours do.  So things like walking, talking, eating and everything else that is ordinary and easy for you is more challenging for somebody with CP (we love our acronyms).  If you want more information about this condition, in case you're weirdly curious, I'd recommend visiting www.scope.org.  But do it later, okay?  Trust them too.  Because I told you that its okay.

One of the many other ways that I'm different from you, is that up until March, I used to be a cyborg. That's right, a cyborg, like The Terminator, except that I didn't go around randomly killing people.  When I did, I did so under strict orders.  And they were only Very Bad People.  I know because They told me.

But I was a cyborg.  Part man, part machine.

I had an implant in my stomach.  A computerised device which could hold a surprising amount of medicine which fed this medicine to my legs to make them do things like bend and move when I wanted them to.  Like yours do.  But when the medicine is fed directly where it needs to be, you don't really need to use that much of it.

You see, when you take medication, it doesn't specifically target whatever pain you have (no matter what the ads tell you).   The medicine has to go to go right around the body before it gets where it needed to go in the first place.  And if you’re taking a muscle relaxant like Baclofen, it takes effect on the whole body, not just the legs where it should be.  The implant delivers medicine straight to where it is needed on a finely tuned basis.  Because of the laser targeted accuracy (or rather the catheter tube) the drug goes straight to where it is needed.  The doctors program all of this into the machine.  And tell me who to kill, maim, slap around, etc.

I have had implants for about twenty years.  They need changing after about 4 or 5 years, because ironically, the batteries run down, and its not a device where you can remove it, change the batteries and put it back.  But over 20 years, its hard to keep track of how many I’ve had.  I’ve lost count.  Really. 

When I had an implant, every couple of months I used to go to hospital have an injection which put the drug into the implant and then it would go from there through a tube called a catheter into my spine where it would do stuff that I used to think was magical and then later took for granted.  This, I now know, was a mistake.  I regret taking technology for granted which made my life less of a struggle.  By extension, I probably took the people who looked after me for granted too.  The company that made the implant are called Medtronic.  For more about the device see

http://www.medtronic.co.uk/your-health/cerebral-palsy/device/index.htm


Its amazing what medical technology can do.  The NHS borrowed all of that stuff from the Intelligence Services and Science Fiction writers.  And put it to real use.

By the way, save our NHS, its the only one we've got.  And lets start giving them positive feedback, because the only time the medical profession is in the media is when its under fire.  And that's not fair.

Sorry, rant over.  Back to the blog.

With the implant I could move about easily.  I had better posture.  I could drive without tension and struggling.  I couldn't walk properly, but that was never the aim.  The aim was that I would have a better quality of life.  I had a better quality of life, despite other crap that I had going on, my physical health was pretty okay.

All of that stopped in March.

In March I developed an infection which meant that the implant had to be removed.

The cause of the infection is still a matter of some debate.

Those hi tech medical experts are able to insert a catheter underneath the skin but wrap it around all the major internal organs.  So the implant would be around or near the stomach and the catheter would be wrapped around the body until it gets to the spine.  That's where the drugs go to.

But whilst we're praising the ingenuity of the medical profession we have to give credit to the human body.  Because that catheter slowly over time becomes part of the body, and flesh grows around it, keeping it secure and keeping it safe from harm.   To be honest, just knowing that the human body does stuff like that just plain creeps me out.  Its not natural!  (Except, in a way, it is.).  You human beings are surprisingly adaptive.  Disabled people are more so.  I've learnt this in the 40 years that I've been on your planet.

Again back to the story.  Changing the implants because of the whole battery thing.  They weren’t Duracell, but better, because they used to last 4-5 years.  The newer implants have batteries that last 6-7 years.  They're smart enough to tell the docs when they need changing.  But whilst the implant can be fairly easily changed, changing the catheter (the tube that the medicine flows around) is another matter.  In some cases the new implant can use the old catheter tubing in place.  Therefore the surgeons don't need to put a new one in.

But taking an old catheter tubing out is another matter.  Because its now grown to be part of the human body and therefore resists removal (remember the whole thing that creeps me out?).  Its not just something that the docs can gently pull out.  Because the body kinda gets attached to it.

This is the Borg come to life: resistance is futile.

Four or five or six implants leaves of lots of bits of catheter in the body, no matter how sealed up they are.  One theory is that one of those bits of catheter caused the infection.

Another theory is that I have an ongoing skin condition called atopic eczema (I do have all the fun.) Skin infection are common with this condition.  A skin infection did start around the implant site and that just spread.  I will blog about my life with AE because I feel the need to get that out of my system and share that with the world.  But that's another blog.

Both of these are theories.  Trying to prove conclusively which was the culprit would be very difficult.

So now that I have no implant how has life been?

Its been a struggle.

I'm understating the fact.  Its been a f***ing nightmare. 

I don't know how other people with CP (or similar conditions) do it.   I really don't.  Any of you reading this have answers, please feel free to reply and let me know.

Taking baclofen orally (by mouth) is massively draining and it has effects in waves - the drug washes over you and you feel a wave of tiredness.  Over your whole body.  God help you if you're driving - or trying to work because when the fatigue hits you all you want to do is rest and sleep.

The sudden loss of the implant has had a major effect on my body.  Its gone into shock and sent the atopic eczema into overdrive.  Now I'm fighting a battle on two fronts and If I'm honest, I'm losing.

So now that I've given you most of the backstory, we ask the $64,000 question: what happens now?

To answer that: I've got the run down on the options that I have.  To save time, I'll tell you what my thoughts are on them as we go along.

1.Do Nothing.  This would be the easiest of options except that its been almost 16 weeks since the implant was removed and I'm, if I'm brutally honest, in a living hell.  The combined war of eczema and baclofen withdrawal has left my body "in distress" as I described it to my consultant recently.

Her reply was equally as frank. "I'm not surprised".  You've had baclofen going through your system for 20 years, did you think that the sudden withdrawal of it wouldn't have any effect on your body?

And she's right (dammit) and the spasms are getting worse, despite the oral baclofen. Especially at night, when its the one time when you want your body to calm down.

In actual fact I tried to "do nothing".  I thought hey Spasticity?  I've have had before.  Lived with it for half my mile.  I could cope with this.  I could cope with anything.  Easy.

However the Eczema going crazy on me, was the second punch I wan't expecting and it floored me.

2.    Look for eczema strategies.  Well, I'm doing that at the moment and I'm still working on that.  The previous solutions which half-worked before are not anymore because of the distress that my body is under.  All eczema is is dry skin.  So the key strategy to deal with this battle is to moisturise, moisturise, moisturise.  And I do.  Every two- to three hours.  And each session takes nearly an hour.  Moisturising gives my skin some relief but it also makes my hands really greasy.  So you're buggered if you use a wheelchair (which I do), and I have to be careful when driving my car because my hands are slippery and my car has hand controls.

Eczema is worse at night because that is when the body generates the most heat.  And there have been 96 nights since my operation.  Every night is a nightmare.  I'm not joking about that one.

So I'm taking medications to help me sleep.  Because I can no longer just lie down and go to sleep like normal people.  Not anymore.  Antihistamines which are supposed to have a side effect of making a person feel drowsy.  Not me.  Not anymore. 

  Therefore I'm having to take quite drastic measures (and I don't mean a hot cup of cocoa!) to go to bed and get some rest.  And that only works for about 4 hours before I have to get up again.  I'm even trying alternative medicine.  But all of them are quite expensive, all of them tell me that it can be done and that it will be a slow process.

3.    Have the implant put back in.  I've a tentative date for September, but to be honest, I'm pushing for for it to be as early as possible, because I'm living every day on an rollercoaster that is half in the sea. I don't know how I will be from one day to be next.  I'm in my third week of being off sick (I drive my car intermittently) and I'm giving thought to having another week off (not really a choice, but not much option either).

Bottom line, is that I'm struggling like never before - except before when I had the pump in over 20 years ago.  Then I was in a lot of physical pain.  Now the agony is different.  I was a different person then.

I'm not the person I was.  My life has undergone a massive change, and I've written before about change: when it happens suddenly  and out of our control we don't react too well.


So, 16 weeks on, am I improving?  I don't think I can answer that because honestly I can't tell. I know that some days are better than others.  I also know that there are days where I don't know where to hide.  I can't hide from my body.

All I can do is take things one step and a time and make the most of every day.

Take care

Joe.

RIP Iain Banks - 09/06/2013

The news that I'd been silently dreading has happened.

My favourite author, Iain (M) Banks has passed away.

This is a sad day for the literary world.  A sad day for readers everywhere.

All readers think that their authors write for them and them alone.  Its a special connection that I don't think really happens with film or any other art.  Its a personal connection.  I used to go to the Library Theatre in Birmingham to hear him speak and there must have been at least 200 people in the audience thinking that this wonderful, witty and charming man was speaking to them and them alone.

Sad man that I am, I've just downloaded a couple of my favourite Iain Banks books onto my Kindle - even though I've got them in paperback and hardback.  Including and especially Against A Dark Background.

Iain might have thought this was amusing.  I hope so. 

Even though I don't drink Iain, I will raise a glass and salute you.  Thank you for your time with us and more importantly, with me.  I have enjoyed many hours reading your books.  I shall enjoy many more reading them again and again.

Peace be with you my friend.  Wherever you are.


Joe.