Saturday, 28 April 2012

Updating my biography. Help!



Since becoming an HMSA Patron, I've decided to update my 'About me' page for my website. I combined the mini biography I've sent to the HMSA with my current web biog, but was thinking it might be too much info, and too long and boring. So here is a draft for comment before I put it on my website. It will also have a photo of me in it. What do you think?

Hannah Ensor,

Author and Illustrator

HMSA Patron for Kids and Teens



As a child Drs decided there was nothing wrong with her and that her problems were 'all in the head', but her Mum concluded she was bendy, injured more easily than most people and took longer to heal. She also decided that this wasn't indicative of anything serious, just 'how Hannah was'. Something to respect, but not worry about. Except make sure Hannah stood with good posture, kept as active as possible and didn't get too exhausted. It wasn't until she was diagnosed that Hannah realised just how wise her Mum had been.

Hannah got through school with good grades despite an unusually high level of sickness absence - including missing 6 months in year 7, and went on to complete A-Levels and get a 1st Class Honours degree in Environmental Health from King's College London, followed by a career in Environmental Health. 



Within 2 years of starting work, the random joint issues and fatigue had reached disabling levels and she was diagnosed with HMS/EDS (being far too bendy) and a year later with POTS (tap-dancing heart and appearing drunk without alcohol).
It was when hospitalised with her first severe POTS attack, which left her too weak to hold a proper conversation for months that the first bendy stickmen appeared. Posted on the hypermobility forum they proved popular and became a booklet.


She continued working in a conventional job until 2009, adapting her hours, role and office around her complex requirements (joint strain, temperature, rest breaks etc.), and drawing stickmen primarily because she thinks they are funny, but also to raise money for the HMSA and awareness and understanding of HMS, until her medical retirement in 2010 - age 28. 


After retiring, Hannah initially worked a few of hours a month as a Maths tutor, but being an author and illustrator has now taken over. She has 4 disability cartoon books (a fifth is well on the way) raising money for the HMSA, 2 children's books raising money for Whizz-Kidz, plus stickman wheelchair signs, communication cards, other disability related products and commissioned work including T-shirt designs for comedian Lost Voice Guy, the CMTA - and of course the HMSA!


In addition to the awareness raising work of each book she has created, Hannah is increasingly in demand at events, disability fairs, booksignings, and schools - working to create a better future for us all.


A combination of physiotherapy, learning to control her movements, pacing, medication, respecting her limits, pushing her boundries, making the most of everything and generally choosing to focus on the positives means that she lives a full and happy life. So what if she uses wheels to get out and about, rests frequently and owns enough joint supports to create an entire exoskeleton?


Although proud of her stickman empire, Hannah thinks her greatest achievements have been in learning to manage her HMS/EDS and POTS and keeping up with her physio regime. It is an ongoing learning process, but has made so much difference to her life.


Having said that, her proudest day of all time has to be 26th April 2012. 


The day she was officially appointed HMSA Patron for Kids and Teens.


Throughout her work there are 2 points which keep coming up: 1 Disability, and 2. Raising money for ‘her’ charities - whizz-kidz and the HMSA. The disability thing isn't deliberate - it just happens to be her normal so it keeps sneaking in. The charity thing IS deliberate. 'Cos they are amazing.


I have no idea why I wrote that in the third person. 


Or why people fall in love with my work.


But I am very glad they do!


For more of my ramblings, see my blog.


Thursday, 26 April 2012

A Good Day

Today was a Good Day.
A Very Good Day.

Not because my hypermobility took a holiday, or because my POTS was well behaved. If I limit a good day to one that is pain and fatigue free, I'm destined for a depressing future! So I define a good day based on any achievements I can clock up.

Today was actually an EXCEPTIONALLY Good Day.

And it is only mid-afternoon :D

Here's Why:

I received nearly £100 of orders through my shop.
I posted the orders.
I discovered that the owner of 'No 2 Things' had recommended me as an 'excellent local cartoonist' for a project.
I completed and posted my Blue Badge renewal form.
I renewed my prescription pre-payment certificate.
I got another booking to speak at a primary school.
I completed a set of commissioned charity fundraising T-Shirts.
I got confirmation through for my stall at Oxfordshire Unlimited Disability Fair on 9th May.
I got called a famous author.
I've done some physio (although gotta do more soon)
I stacked the dishwasher
I put a washing machine on
I bought a birthday present

AND

I am now officially HMSA Patron for Children and Teens.

Such a compliment to be asked, and I really hope that I can be both a positive role model for young people with HMS and help spread understanding and awareness of the condition.

Now I need to go write a short biography for my new role. But that means being a little sensible, and all I actually want to do is run around shouting WHOOP.


Wednesday, 25 April 2012

Hospital Memories #2

As I work towards publishing "You know you've been in hospital too much when..." I keep coming across old sketches from various hospitalisations. The ones which tell specific-to-me stories won't make the book, so I thought I'd post them here - I'm aiming to put a post each week until publication!

So:

Here are my stickman pioneers. Drawn during my first hospitalisation for serious flop and little speech they were the unwitting instigators of my entire business.



Inspired by a slightly confused neighbour, and some vociferous complainers.

Friday, 13 April 2012

Train Travel - disability style.

I often go by train between Didcot and Bristol Temple Meads. Yesterday's journey illustrated several differences in what train travel is like when you have wheels of your own:


I booked assistance in advance as per usual.


And then:


8:00am A call from local train station. The train I'm booked on will arrive at a destination platform with out-of-order lifts, so they have a suggested alternative route which will avoid these issues.


Cool. Problem solved almost before it started. Slightly later train means slightly longer in bed :D


8:10am A call from destination station. Confirming that lifts are out of order, and that adapted route will be OK.


Wow! Talk about excellent customer service. Impressed that both stations are being pro-active and problem solving.


10:57am. Cheery, polite station staff put up the ramps and get me on my train.


10:58am. FGW trains have automatic doors between corridor and carriage. I get my feet through the door then it closes. Hitting the foot rest and knocking my chair askew. No big deal, it opened again.


10:59am. Try to move now door has opened. Back left wheel jammed against wall. Front right corner jammed against doorframe. Front castor at the wrong angle. Can't move forwards. Can't move back. Can't rotate. My eyes widen, and I catch the eye of a gent in the first row of seats "I'm stuck!" I say, wide-eyed with surprise, but grinning somewhat at the absurdity. To which he responded "here, let me try" and with a hefty tug on the frame, I'm free and settling in to my space.
(And Mr Knight in Shining Armour, if you ever read this, you did exactly right - you assumed I was fine and capable til I said I was stuck and needed help, then you helped 'til I was free, and you let me be again. Perfect)


11:40 Arrive at Bristol Parkway. Chap is waiting with a ramp. He asks if I know the way out - "But I need to catch another train to Temple Meads!" "Ok, that'll be this platform in a few minutes" - so we chatted until the train arrives. I learnt that in Cross Country trains, if the front couplings are yellow, 1st class is at the front, if white, 1st is at the rear. And the wheelchair space is at the opposite end to 1st class) We also swapped horror stories regarding buggies vs wheelchairs in the wheelchair space.


11:56 Ramp onto the train. All good.


11:57 ARGH! BUGGY!! .....Oh. Thank you, young mother, who without fuss or complaint, moved so that I could travel safely. (Ms Young Mum, If you ever read this, thank you so much for your respect and your attitude. People like you give young Mums a good name.)


11:58 I settle in to the wheelie space. It is next to the toilet, smelling of wee. But there is a really big, complicated looking emergency alarm thing. I want to see what happens when I press it. But I don't. Because I am good.


12:08 Arrive at Temple Meads. Staff member with ramp waiting cheerfully. I thank him and reassure him that I know the way as I speed towards the Exit (station floors are just perfect for fast wheeling)


12:09-16:00 Getting on with stuff.


16:00 Arrive back at Temple Meads for round 2


16:01 Emergency swerve to miss a woman who's paused infront of me. "Sorry!" I say with a grin. I hear an annoyed "Some people are in such a hurry". Thinking about it I grin. I wasn't in a hurry to get anywhere. But I was speeding. Simply cos I can and it's fun. I'll be more careful in crowds - but I still intend to enjoy the flat-surface-speedway stations provide.


16:03 Report to Customer service for assistance. Whoop!! The lifts were fixed at 15:10, having been broken all week.


16:10 Arrive at platform. Am greeted with a wave and "Be with you in a bit" by the chap dispatching a different train.


16:12 Person 1 asks whether I want help onto the train. "'s OK, a chap'll be here in a minute with the ramp"


16:13 Person 2 asks whether I want help onto the train. Ditto.


16:14 Ramp onto train. No issues with door. No luggage in my space. No problems.


16:17 A family of parents, Grandma and 3 kids age 2,4 and 6 sit in the seats opposite. Chatty but well behaved. I settle down to enjoy watching them, and listening in on their chatter. Their buggy fits nicely across the aisle from me. The Dad looks for a seat - I point out the flap down one behind him. And we start chatting.


16:25 A young Mum arrives with a 1 yr old. And non-foldable buggy. Recipe for disaster? No. Recipe for cheerful musical  chairs as they solve the space/buggy puzzle like a jigsaw.


16:30 train pulls out. By this time young mum and myself are totally involved in the general chatter of the family. Really lovely.


16:45 2yr old starts to get restless. Oh look! I just happen to have "Biscuit Baking" and "Welly Walks" in my bag. Grandma loves them. I'm not sure 2 yr old is convinced - til she demands "do it again" then sneaks over to ask for the other one from my bag :D Young Mum also reads them to 1yr old. Who loves the colours, but wants to eat the pages and doesn't care about the words. Grandma also reads some of 'You know you've been pushing it when..' and kept hooting with laughter.


17:05 Tickets checked. Train Manager also checks which station I'm going to.


17:08  the 2 yr old finds the 'call button' by my seat and pushes it before Grandma can leap across the aisle. Train manager arrives within seconds. I look all innocent and point at the 2 yr old with a grin. Manager believes me. And we decide to temporarily deactivate the call button - if I need help, someone from the nice family will run for help or press the call button in the loo.


17:10 My speech is getting more difficult. Not only is coordinating harder, but I am at the 'If I talk I'll choke' stage. Inconvenient. How do I explain I'm not being rude, or deliberately backing out of conversation. AhHA! Communication Cards here we come:


It is the first time I've used them when I've been unable to speak, but wanting/needing to.


Response? a howl of laughter. Followed by "But you are OK?" Thumbs up. And they continued including me in the chatter just like before, reading responses from my face and gestures. I was all  prepared for sympathy/fear/difference opening up a gaping chasm of awkwardness, and what I got was casual acceptance. Perfect. Slightly surreal, but perfect.


17:15 Train manager returns to ask my name so he can check Didcot is expecting me. Moment of fluster - he knew I could speak cos we met 10 mins ago. AhHA! Communication Cards.


Response - slight twitch of concern. I then show him my name on a card. He grins and thanks me.


17:16 through the carriage door I hear the manager calling a station, and telling them I'll be arriving so be ready with a ramp.


17:17 Manager pops his head back into the carriage, reassures me that he's made the call. Thumbs up and grin.


17:28 Train arrives at Didcot Parkway. The lovely family is also leaving at this station. I get to the door....no ramp. No uniformed man. Few moments pause. Lovely-family-Dad asks if he can help. I point at a distant yellow jacketed figure. Lovely-family-Dad heads off while I discover that a pair of hot-pink DM boots sticking out of a door is an effective way to prevent train departure.


17:30 Staff member sprints up and grabs the ramp. He's met me lots of times, knows me by name and was really appologetic - the message hadn't reached platform staff.


He continues apologising - I still can't speak without mega choke risk. Momentary panic - he's worried that I'm quiet cos I'm cross/offended/upset. He'll be really upset if he thinks I haven't forgiven him - AhHA! Communication Cards!


I show him the card, with a grin and a shrug. He shouts with laughter - accepts my silence as unconnected to the ramp mishap, and again, returns to treating me as usual, interpreting my grin, fake stroppy face, shrug, grin as ''Twasn't your fault, was slightly annoying, but hey, these things happen, and you've handled it well -thank you" - At least I think and hope he did!


So we parted with a 'See you soon' on his part, and a happy wave on mine.


17:31 Off I wheel, speeding along the smooth floors, relishing the freedom of movement that they give, and pleased to be nearly home. Just one taxi ride away.


ARGH! What if the taxi isn't here?! I can't call for one! - I wheel out to see.


Phew. Taxi is waiting. The driver has met me before, and knows I always chat. This time the 'he's gonna expect me to talk' moment holds no fear - I immediately hold out my trusty card. 'That's just not good enough!' he laughs (he's driven me often and we always tease each other, so this was a perfect response) - and completely unphazed he asks me whether I'd like to go in the front, or stay in my wheels - I point to the front seat, he sorts it out. He chatters away, just like he usually does - and whenever he realised he'd asked a 'words answer' question, he'd rephrase, but not as if it was tedious, or as if it was a special concession. As if it was a normal part of conversation.


I arrived home, worn out, silent and happy, safe in the knowledge that although in one way so much had gone wrong, so much had also gone right. And the rights were so much bigger and funner than the wrongs, making the day a good one.


But are you surprised that public transport travel exhausts me?

P.S. The timings aren't really 100% accurate really. It just seemed like a good way to structure it! I am not really that time-accurate. And don't complain if the times don't entirely 'add up'!







Friday, 6 April 2012

Hospital Memories #1

Having started on my next book 'You know you've been in hospital too much when...' - humourous cartoons of hospital reality, I was flicking through some of my sketchbooks from hospital stays and got the giggles. Having been asked by @daddydoink on twitter, I will share some of my sketches too specific to me to make it into the book. 


Hospital Memory #1: Legless.


A nurse-friend would pop in during her breaks, we'd chat and laugh. She totally wasn't fazed by my bendy-joint quirks.....


Even when she accidentally popped my hip out of joint.


She made me laugh as I changed position, and voila. There she stood. Trying to hold my leg on. The nurse who had just removed my leg. Both of us part aghast that I'd dislocated, part doubled up with laughter at the irony- and wondering whether 'I was holding a patient's leg on' was a valid excuse for being late from her break. 


We were trying to un-dislocate it, but most of our energy went up in giggles. It cemented our friendship which is still strong today.


I love how what I remember is not the pain, but the comradeship and the laughter. 

Sunday, 1 April 2012

My most bizarre train travel experience

Reminded of it by Channel 4's 'No Go Britain' I thought I'd post my strangest - and worst - train journey ever.

I'd booked assistance as usual.

I'd booked the wheelchair space in coach C.

A member of staff got me onto the correct train.

So far, so good.

It wasn't a full train. But there was a group sitting in my pre-booked wheelchair space. 2 empty buggies, 2 mums holding babies sat on the 'flap down' seats. On the other side was a wheelchair user and 2 other group members. (this train has 2 wheelchair spaces! Miracle!)

So I asked if they could move the buggies slightly - (there was space for me and both buggies without folding them), and move to seats slightly further along the carriage. I explained I'd booked that space.

They said they couldn't. They wouldn't.

So I nipped back to the train door and asked a passing member of station staff for help as people wouldn't move from the wheelchair space.

He replied "They have to." And carried on his way.

I returned to the space I'd booked, and said "I'm afraid you need to move. I've booked this space and it is the only place I can travel safely."

They refused. It was impossible for them to move, they said. They HAD to sit there. But said I could sit behind the wheelchair user the other side. Where there was a mountain of bags.

Whenever I have travelled without securing my chair properly (e.g. straps in a taxi, or properly backed against the wall with my brakes on in a train) I have flipped, or nearly flipped my chair - and injured myself.  So I will not sit behind an unsecured wheelchair. If it tips and lands on me the damage to me won't be superficial. I won't take that risk. Besides, my moving the pile of bags wasn't an option.

I tried to explain this but it made no difference. By this time the doors were locked and the train starting to move. 

There was no way I could stop the train until I was safe. There was no way I could get off the train and wait for another one. So I had to make a split second decision as to how to minimise the damage this journey would cause me. I couldn't remain where I was. But there was a corner in the corridor, opposite the loo, where I could sit with enough support to avoid catastrophe. Provided I sat on the floor.

So I did. I spent an hour sat on the floor opposite the open toilet door. Wedged in a corner, clutching a doorframe to stay upright. Holding my chair to stop it tipping. People stepping over me to get to their seats. The joints of my pelvis slowly pulling apart, the pain levels steadily rising.

And yes. This was still better than the alternatives.

I spoke to the station staff at my destination station. On their advice, next time I will pull the emergency cord in the loo and kick up a fuss until I am given the chance to travel in safety.

It wasn't the practicalities that made this travel difficult, it was the attitudes. Common sense or simple courtesy could have transformed this nightmare into a dream.

[Edited to add: For another, and very different train travel story, see http://stickmancommunications.blogspot.co.uk/2012/04/train-travel-disability-style.html ]