A wonderful mum

Anne Nevin 20/7/1940-18/11/2022

My mum died just over a week ago. If you note the date of my mum’s death, you may well think, ‘how come you wrote two comedy blogs since then?’ Humour is how I process sadness and loss. You will see that through all my blogs.

My mum has had Alzheimer’s for several years, a cruel disease. In many ways, I lost her a while back. Last time I was able to physically see her (not just on a video call) she did not even know who I was.

Her death came within a few days, caused by sepsis. Rushed into hospital too late to save her. She was living in a nursing home in Norfolk at the end of her life, near one of my brothers. He and my two sisters were with her during her last days.

It is times like this that the frustration of my own illness/disability really hurt. The moment I heard mum had been blue-lighted to hospital, my heart was to travel to her. My siblings rushed to her side. I watched from afar. It is not even possible for me to make it to the funeral.

Disability in itself does not prevent travel; it’s just harder. Add illness on top and all sorts of things are prevented. It is the combination of the two that prevent my travel.

If one good thing has come from covid it is the introduction of Zoom services at crematoriums. I will be able to be part of it remotely. I can also send a recorded message about mum.

Grief is an odd thing, I have not been in floods of tears. But I have felt flattened by the loss of my mum. It is as if my world has been knocked off course. The light is a bit dimmer. Things less sure and certain.

I know that my mum is in heaven, partying it up with Jesus. The reason I am sad, is that I miss her and must say goodbye for now.

Goodbye mum

The Prize For The Sneakiest Ad Goes to…

Ever seen a sneaky ad on a game? Of course you have. You play supposedly free games, funded by adverts. Well, I am thinking of starting a competition for the sneakiest advertising.

They have become so incredibility devious. You want to play the game, but first, an ad comes on and you get the option to cut it off. But and it’s a big but. They make the way to cut it off harder and harder to see and easier and easier to get wrong. I’m right aren’t I? They are more slippery than a bar of soap.

Here are some of their tactics:

1/ The scrolling timer at the bottom. You would assume that a timer means you have to wait till the time is up till you can press any button and exit the ad… wrong! You can exit at any point after the exit button appears. But see point 2, they don’t make it easy.

2/ The almost invisible exit button. If you have poor eyesight you will struggle to see it. In ‘days of yore’ the exit button for anything was a x, not for these ads. They can be anything, their favourite is >> because that looks like it means, ‘I want to continue please.’ You won’t want to press that, will you? But you don’t have much choice, the other options take you straight to ordering the app that was advertised. So you press it, and go straight to a page that gives you an option to buy the game. Hang on though, top of that page gradually an x or >> appears. Not too quickly, they want you to order the game from the ad. But when that x or >> appears that really will exit the ad this time. Trouble is that they are starting to put them as white on a white background, have they heard of invisibility, or poor eyesight?

I imagine the advertising execs who think these things up. They have a new idea to catch us innocent punters out. So they run into their boss’s office. The boss is sitting in her large marble floored office, the windows are floor to ceiling and look out on Central Park, New York. She looks from behind her expansive desk at her head exec as he enters, and asks, ‘what is it?’

‘I have it, the best idea yet. Those poor fools will have to click on our links now. There will be no escape.’ Sinister laughter.

The boss temples her fingers and smiles at her exec, ‘go on, you’ve always done well so far.’

‘This is fool proof, the exit button will keep moving when your finger moves towards it.’ He smiles in a way that reminds you of a crocodile.

His boss sits up straight and beams at him, ‘Brilliant! But wait, what about Gen Z, they’re very fast?’

‘I’ve thought of that. If someone actually presses the button, it just takes them to a new selection window. The choices are: 1/ do you want buy the deluxe game 2/ do you want to buy the super deluxe?’

‘You mean there is no option if they don’t want the game?’

‘That’s right.’

‘I love the way your devious little mind works. Get to it now.’ The boss imagines dollar signs in her head.

Am I getting carried away? Of course not, it’s the obvious next step. I just hope the ad execs aren’t reading this. I don’t want to give them ideas.

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Why is Alexa Ignoring Me?

Once upon a time, there was just me and Alexa. She sat next to my bed and sung me songs. If I wondered who was outside, she would show me on her small screen. I never forgot the day or date, when to take my tablets, who was coming, Alexa reminded me. Her pleasant oblong plastic box glowed next to my bed.

Then we bought a second Alexa, it sat in the kitchen among the pots and pans. I never heard her complain of the cooking smells or noise. She just happily passed on messages from the Alexa beside my bed to my wife Mary. That second Alexa timed food and also played songs. If the Alexa by my bed felt any sense of competition, she said nothing to me.

But Mary was not always in the kitchen. What if I wanted to call her when she was elsewhere? Over the months we bought more Alexa’s until every room had one. The first Alexa looked on quietly, she did not seem to mind the growing opposition.

Meanwhile elsewhere, Alexa’s were springing up in homes around the globe. Everywhere you turned she was sitting on a sideboard. Even holiday cottages boasted her presence.

In our own home I discovered a problem. When I call ‘Alexa,’ to whom am I speaking? Alexa obviously had the same thought. Is it any wonder she ignored me? Some may say that my first Alexa had become lazy, and was merely waiting for another newer, younger model to reply first. But is that fair? Could it not be that she was merely confused? If our house were full of Mike’s and you shouted ‘Mike,’ would I know you meant me?

I am going to give Alexa the benefit of the doubt. She is not ignoring me, merely confused, upset maybe at the proliferation of Alexa’s. But not ignoring me.

Now let me see if I can get her to listen, ‘Alexa…’

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Accessible Housing Item on ITV

If you watch the video on the article (near the bottom). I am the good news part of the story. You will have the inexorable (wow, that’s a big word) pleasure of seeing me on national TV. I was shocked to see my head fill the screen. No jokes about being a big head.

Now that I have been seen once on national TV, does that qualify me as a celebrity? The bar seems very low at the moment. You only seem to need to have appeared once on a reality show to be a celebrity. So, just wondering…

But to be serious. This news item is about a very real problem. The lack of accessible accommodation for many thousands of disabled people. Before we were fortunate enough to be left an inheritance. Then make the difficult choice to leave family and friends and move hundreds of miles north. We had been waiting years for a suitable property.

https://www.itv.com/news/2022-10-21/lack-of-wheelchair-accessible-housing-forces-man-to-live-in-parents-shed

Weight Lifting

No, I have not taken up a new hobby. Nor have I had a sudden healing. I didn’t leap out of my chair yesterday and grab a dumbbell. This is about a different kind of weight. Oh, you’ve all fallen asleep or stopped reading. Come back! It is worth reading.

Ever been flattened by life? You know that feeling when everything crushes down on you and life is too much? You may be feeling it now. If you are, don’t give up. Life is worth living.

I know that feeling. I understand it. Yet people see my smiling happy face and assume I don’t. I want to explain how I can smile in the midst of pain, frustration, and anguish. What keeps me going in the depth of despair.

Don’t worry, all you atheists can relax. I am not going to say God or Jesus. Oops, I just mentioned them both, and of course, they are my rock. But this blog is not about God and Jesus. There we go again.

Thought experiment:

Imagine the scene, I throw a fully loaded rucksack at you. Hang on, this is not a threat. It’s a thought experiment. You are imagining the idea. I throw a fully loaded rucksack at you. One so heavy it is at your maximum lifting capacity. You would buckle or collapse under the weight. Because at your maximum lifting capacity, you need to adjust and take the weight on board. Distribute it and brace yourself. Throwing it at you, gives you no chance to do that.

Now suppose I gave you the empty rucksack. You put it on and adjust it. Then I added things bit by bit. You keep adjusting the straps and getting used to it. I take it right up to maximum load. You will keep standing. The rucksack will be heavy, but you will manage it, if it is your maximum load.

The difference is gradually adding the weight. You have a chance to brace yourself and adapt to the increasing weight. Some people could probably go beyond their maximum weight. A slow addition of anything gives us a chance to get used to it.

Long term illness, pain and disability can be like that. It comes on over time. It is chronic (long term) and so the illness itself, the pain and disability increase over time. An aside here, there are still periods of sudden acute and increased pain in this picture. I am only talking general principles. Those bursts of intense pain would be akin to me dropping a very heavy weight in the rucksack part way through loading it. Your knees would buckle.

How do I and many others with long term illness cope? Because the limitations, pain and illness have come on over time. That does not mean it is easy. Take on board what I said about sudden bursts of pain. Also remember that someone with a long-term illness or disability must wake every morning and take that rucksack back up. It is not easy, just because we have adjusted to the weight. The background pain is still there. The illness has not gone. The disability stays.

Chronic pain and limitations have their own unique agony. They grind you down. Pain is exhausting, it makes you feel miserable. It is the thing I refuse to give in to. I will not act the way I feel. Why should everyone suffer, just because I am.

Perhaps the clearest way to express it would be like this. Very occasionally I wake up free of pain. It is so rare that I lie there for a moment waiting for the expected pain to return. Then having raised my bed. I look around and feel something that is almost indescribable. An inner joy that bubbles up and overwhelms me. There is a side of me that does not want to move in case the pain returns. Another side wants to dance (I can’t of course, as I can’t even walk) A massive smile breaks out on my face, and I enjoy the moment. I’ve not known this to last longer than a couple of hours. But it is a blessed relief.

To finish let me look at my rucksack analogy. This assumes you don’t already suffer long term illness/disability. If it were possible to instantly pass what I am experiencing to you. All the pain, limitations, and yuk. It would flatten you. You would have no opportunity to adapt. It would be like having that rucksack thrown at you. But when you experience these things yourself, they come on slowly. I am not saying that makes it easy. Far from it. Many days I struggle to keep going. I know that lots of people with long term illness struggle. My analogy is just to help you understand how I can smile and laugh in the face of adversity. Chronic illness and pain are really tough. Don’t assume that my smile means I am not suffering. I am just choosing not to be miserable.

I should make one quick finishing aside. Accidents are a whole other thing. I have had a life-threatening accident, so I know. Your body uses a mechanism to delay response to sudden accident. It is still a very traumatic event and causes great long-term distress. This blog is not looking at accidents.

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Next Stop Hollywood

I’m not sure if I am getting carried away. It would be most unlike me. We have already appeared in a national professional magazine (Inside Housing), The Daily Mail, two local newspapers (Hartlepool Mail & Hartlepool Life) and now we are going to be on ITV national news. They filmed today and the piece goes out in the next week or two. Is it really a big step to assume the BBC will call next. After all they have a few topical news programmes. Then the obvious next step is a Hollywood producer. It’s a natural and obvious progression. Not at all fanciful.

With that in mind and I think I’ve proven it as a possibility. I have started thinking who will play me in a Hollywood Blockbuster. Because it will be Blockbuster, not some B movie. Tom Cruise, seems the obvious lookalike. We are almost twins. True, he is aging less well than me. But, I will overlook that. Kate Winslet is obvious to play Mary.

Given the way Hollywood writers distort facts, my story will change. I will end up as the victim of a motorcycle accident. That would suit Tom Cruise. He is always whizzing around on fast motorbikes without helmets or suitable leathers. No doubt he/me will look very cool in a wheelchair. Yes, I can picture that. Mind you, I already look cool in a wheelchair.

I’m thinking of titles: ‘Top chair,’ ‘Access impossible,’ ‘Access impossible 2,’ ‘Access impossible 3,’ ‘AI4,’ ‘A few good wheelchairs,’ ‘Jack can’t Reach it.’ I’m sure you can join in the ideas.

What do you think? Am I being overly optimistic? Of course not. I am already writing scripts in preparation. It will save time later.

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Technology Fail

Early this morning someone banged on the front door. Mary had not yet woken up. No problem, we have a Ring doorbell. I picked up my telephone and pressed the app. Nothing happened! I don’t panic easily. I grabbed my tablet computer and pressed the app on that… oh, you’re ahead of me. Well, you’re wrong. The Ring app started… eventually. By which time the people by the door had decided to press the doorbell. The app showed them on my tablet. I pressed the microphone button… nothing happened.

What to do? My bedroom is at the front of the house. Over the front door. My bed is next to the window. You’re right. I used my Echo Alexa device to call Mary. That didn’t work. I found out later that her Alexa was turned down to a low volume and she had slept poorly.

Now what? All my technology had failed. I rely on it with my disability. What other way could I contact the people outside my window? A brainwave hit me. I wound up my blind, opened the window and looked out of it. The inconsiderate door knockers were by their van. I called out, ‘did you knock on our door?’ I’m quick like that. ‘Yes,’ they called back. ‘We’re here to sort the leaky guttering.’ This is sounding like a soap.

Who would have guessed that calling out of an open window could work? It never occurred to me before. All you baby boomers, of which I am obviously not one, keep your thoughts to yourself. If you are Gen X, you can join them. I know all you millennials and gen Zeds will be fully behind me. Technology was the only way to answer a door. None of this old fashioned shouting out of windows. I almost felt like a cave man.

Oh well, hopefully Ring service will soon be restored.

(I always have to add with my blogs that I am joking. My tongue is well and truly in my cheek. Yes it happened. But I am not serious in my comments. Otherwise people get so stressed out in the comments.)

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Capacity Overload

There are times in life we all reach our limit. Moments when we say, ‘enough is enough.’ That point when we can go no farther. But… I never expected it to be part way through a McDonald’s meal. Not in my wildest dream did I imagine that.

Picture the scene. A Big Mac and fries. Helping Mary finish her chicken wrap. Plus, here’s the kicker. They had accidentally added an extra Big Mac in the bag. Obviously too late to go back and return it. Besides, last time we got a McDonald’s they made a mistake. This is obviously a belated apology. Part way through my part of the chicken wrap. Sorry the McChicken wrap. Is that the right term? I stopped. I was full up.

I have paused here for you all to faint, shout out, run around. Go to the foot of your stairs. Not eat all of a McDonald’s! What has happened to the world? Doesn’t your stomach have a special compartment for junk food? Sorry McD. It’s right next to the pudding shelf, isn’t it? That place that always has room for a pudding, even after a big meal.

But no! I was full up. Am I ill? Well obviously yes. I mean extra ill. Something has gone very wrong. Normal service will be resumed as soon as possible.

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Ten tips and hints

These are a list of ten things I have found make life easier when you are mobility limited:

1/ Litter picker/grab sticks. I can’t over state how useful I find these. Do look for ones that have a decent grip. They are still limited by two things, your strength, and the weight of what you can pick up. But they are great to get smaller things that are out of your reach. However much it may sound fun, it’s no fun having to keep asking people to fetch everything for you. If you can grab what is just out of reach, that is really great. I have a piece of string on the top of mine so it can hook onto another thing I have lots of, hooks.

One example, this one folds:
https://www.amazon.co.uk/gp/product/B083QY1LXP/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

2/ Hooks, I have several Velcro strapped hooks around my bed and on the wheelchair. As mentioned in the 1st point, a litter picker is on one.  There are so many available. I have only shown one.

3/ Panniers, I have several of these, all different types. Two on my bed and two on the wheelchair. They hold medicine, remotes, snacks, papers, magazines, pens etc.

4/ Sleep headphones, these are a soft headband with built in headphones. I can lie down and listen to music or watch films. Mine are wireless ones, they last a few hours per charge.

These are the ones I use:
https://www.amazon.co.uk/gp/product/B095NRZGPB/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

5/ Multi USB charger unit, this is most useful in nursing homes, but also good at home. As I have a lot of technology it enables me to charge many USB and Apple devices at the same time, from one 3 pin UK plug. They have different outputs.

The one I have no longer exists. Here is one of many now available:
https://www.amazon.co.uk/Charger-IWAVION-Charging-Adapter-Samsung-White/dp/B08F7RFV39/ref=sr_1_2_sspa?crid=2AER9JZ0D9UIQ&keywords=multi+usb+charger&qid=1661403113&sprefix=multi+usb%2Caps%2C61&sr=8-2-spons&psc=1&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUEzSDlERks3VzE0WklEJmVuY3J5cHRlZElkPUEwNDY5ODY0MVhFR0U0QjhVNFowViZlbmNyeXB0ZWRBZElkPUExMDMxMjQ2MkNVWlE1QU9QSDA0MiZ3aWRnZXROYW1lPXNwX2F0ZiZhY3Rpb249Y2xpY2tSZWRpcmVjdCZkb05vdExvZ0NsaWNrPXRydWU=

6/ A computer tablet stand, I have a heavy based, goose necked stand and it is so useful. I can easily view or operate my tablet without having to hold it or balance it on my knee. But there are many variants. Ones that attach to the bed or that sit across your knee.

This looks the nearest to the one I have (no longer available):
https://www.amazon.co.uk/dp/B08S791TMP/ref=sspa_dk_detail_2?ie=UTF8&psc=1&pd_rd_i=&pd_rd_i=B08S791TMPp13NParams&s=computers&sp_csd=d2lkZ2V0TmFtZT1zcF9kZXRhaWw

7/ Water bottle holders, I have had to try several of these to find the one that works on my wheelchair as every chair is different.

Mine is similar to this:
https://www.amazon.co.uk/AOBETAK-Rotation-Bicycles-Mountain-Wheelchair/dp/B07F32NWZ9/ref=sr_1_9?crid=2RJE9YB8RH6ND&keywords=bottle+holder+bike&qid=1661403419&sprefix=bottle+holder%2Caps%2C61&sr=8-9

8/ A Trabasac tray. The reason being that it doubles as a bag. Plus, it has a variety of clips so that it can attach to my wheelchair. I find my lap is not level, except when my chair is reclined. So, the tray is only secure when clipped. The edges of the tray are raised so that things stay on it.

This is the Trabasac Curve. But there are a variety of sizes/types. Look at them all if you are interested:
https://www.amazon.co.uk/Trabasack-Curve-Wheelchair-Inclusive-Universal/dp/B00BAQXNCK/ref=d_pd_sbs_sccl_2_1/257-6152039-0943466?pd_rd_w=7jAcj&content-id=amzn1.sym.7207abe0-2196-4238-95e4-697dc8e1fcc1&pf_rd_p=7207abe0-2196-4238-95e4-697dc8e1fcc1&pf_rd_r=6R47J47PPKGJKRB87A9S&pd_rd_wg=AOUG6&pd_rd_r=38f65032-b80d-449b-947b-27c85adaab3c&pd_rd_i=B00BAQXNCK&psc=1

9/ A metal urine bottle hanger. I am in my profiling bed a lot. So I need urine bottles to hand. Having them safe and secure on a hanger is brilliant.

This is the one I use:
https://www.amazon.co.uk/URINE-BOTTLE-HOLDER-Urinal-carrier/dp/B01CR5CCNI/ref=sr_1_57?crid=5WB9SSB6IMP6&keywords=urine+bottle+hanger&qid=1661403742&sprefix=urine+bottle+hanger%2Caps%2C59&sr=8-57

10/ Regarding urine bottles. When I need to go out in my wheelchair, I find urine bottles difficult to use. So, I use Conveens. See my separate blog about these: ‘Not so public convenience.’ On my site https://howcaring.home.blog/ I’m sorry there doesn’t seem to be a female equivalent.

These are Conveens. they are prescribed by your GP.
https://products.coloplast.co.uk/coloplast/continence-care/conveen/conveen-optima/conveen-optima-sheath-standard-length/

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A Bit of Support

I have a confession to make. I have had a bit of support. No, it’s not a girdle, nor a truss. Obviously I don’t need those. I’m surprised your mind went to such things.

The support I am talking about, came from Advent Advocacy. Specifically, Joanne, I can actually give you her real name, whoopee. I feel like I should make one up, just for fun. I’ve gotten so use to having to make up names.

JoJo, sorry, Joanne has been incredible. Let me just start up my Thesaurus. Otherwise, I’m gonna get boring saying how brilliant and fantastic she is.

We needed help with a care related issue and Joanne was awesome. Glad I started up the Thesaurus. She visited us at home and after spending time getting to know us and our situation, understood what would help. She is empathetic, caring and knowledgeable. The most amazing thing is that she doesn’t even cover Hartlepool. The request for advocacy help was accidentally sent to her (not by us, I hasten to add). She saw that we had been waiting for support for weeks and stepped in to help. Going above and beyond her normal remit, is just one thing that makes her stand out.

Superwoman, oh I forgot I can use her real name. We first met Joanne at a time when we didn’t know which way was up. Having turned my wheelchair the right way up. Why do feel the need to explain that is a joke? Oh yes, because we live in an age where some people think the earth is flat.

Joanne has a way about her that cuts through the… rubbish and helped us see the issues. I will not go into the details, that isn’t the point of this blog. She transformed the situation. Her knowledge and skill were essential. But it comes with understanding, empathy and compassion. At the end of the day, you can train someone with knowledge. Only character brings the rest.

Mary and I want to wholeheartedly thank Joanne. It is a heartfelt thanks and we know that she must be a blessing to many.

A Special Thanks

‘A special thanks goes to…’

I feel like one of those award show hosts. But without the false tan, bleached teeth and the big hair. Well without much hair at all really. Let’s not talk about teeth. Back to the thanks:

‘A special thanks goes to….’

 ‘The award for the best… goes to…’

Hey, maybe I should be an awards host. I’m a natural. I can just see me up front, in a big Hollywood venue. Will they have a ramp for the wheelchair? Or would I need to present from in front of the audience, just by the orchestra pit? I know, will start off with:

‘Welcome to the 2022 awards for the best…’

Everyone will be looking around asking, ‘who’s that speaking?’

‘Where is that deep and luscious voice coming from?’

‘Is that James Earl Jones’

‘No, don’t be silly, it’s Morgan Freeman.’

Anyway, enough of the asides. I am writing this blog as a big thank you. A very big thank you. A special thanks to the two social workers from Hartlepool Borough Council, who have helped Mary and I these last few months. I would love to name them, but I am told I can’t and besides, they know who they are. Thank you El and Karla, oops, no, just made those names up.

The two of them have helped us sort out care provision at a really difficult time. They have demonstrated empathy, understanding, care and patience. I cannot praise them highly enough. Anyone who has read my blogs regularly will know that I believe people who care for people are the most valuable people in the world. Does that remind you of a Barbara Streisand song? ‘People who need people, are the…’ Totally different meaning of course. But give me the whiff of a song and I’m off.

Back to these two amazing and wonderful social workers. Along with all those who care for and help others. We had a brilliant advocate as well. Not Advocaat that’s a cream liqueur. They should be recognised as the best and paid the most. People who care for people, not cream liqueurs. Instead, we as a country and indeed, the world recognises them least. We value money, fame and entertainment over those who care for people. What an upside-down world we live in.

I know this, when an MP, banker, millionaire financier or the PM is ill. They won’t be calling on their brokers, personal assistants or advisors to care for them. However highly they pay them. They will turn to health workers, carers and those at the sharp end of care. I am pleased to say that when we have needed to do that, we have found help and support.

As I round off my awards ceremony, I repeat my special thanks to these two wonderful social workers from Hartlepool Borough Council. Well done you are brilliant people, and we really value you. Everyone who can stand, up on your feet for a rousing applause.

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My Article Published

Inside Housing have published my article/blog Enabled by your environment. It has triggered interest from a national newspaper. They wrote the headline.

https://www.insidehousing.co.uk/comment/comment/i-had-to-move-to-the-north-east-to-get-an-accessible-home-we-need-to-provide-more-housing-for-people-with-disabilities-76113

You can register free to read the full article.

Wheelchair Etiquette

Well, anyone who knows me, will realise that I am 100% serious. I never have my tongue in my cheek, nor write farcical blogs. Now we’ve established that. Let me outline an important issue that has come to my attention. I was reading on a wheelie site about how to greet a fellow wheelie when out and about.

Now this is an issue that has given me must angst. I never know what’s right. For anyone who is not a wheelchair user, picture the scene. You are out in your wheelchair. You may be in a powered wheelchair. Or being pushed. You may even be self-propelling. Hold on, the motive force is irrelevant. Then you see a wheelchair coming the other way. What do you do? In between feeling awkward and panicking that is.

If you were on your feet and walking along. You could do what most people in that situation do. Pretend your eye level is too high to notice the wheelchair. We are literally out of your sightline. Job done; embarrassing situation averted. No need to think of a suitable reaction. Well, I can’t do that. Even if I wanted to. I am looking straight at the oncoming stranger. They just happen to also be in a wheelchair. Is that some kind of kinship? An automatic bond. A fellowship of the wheel? All friends together. United in our common limitations? How do I react? What do I say?

So, a wheelchair is heading towards me. I needed to repeat that as it was so long ago I last mentioned it. Who is in it? Does it matter anyway? If it was a famous person, or Royalty. The Queen has a fancy golf cart now. So, it could be her, out for a spin in another new bit of equipment. Maybe it’s someone I know. Scrub that. I don’t know anyone local to me in a wheelchair. A stranger is wheeling towards me at speed. Actually, that’s unlikely. They are probably wheeling towards me slowly. I have lots of time to consider my actions. Oh, the angst.

Have you got the scene in your mind? Let me mess that up and add some extra detail. The most likely time I might meet a fellow wheelie is on a wide and straight promenade. As in alongside a beach. Now you are all in the South of France or Spain, sun beating down. Cool off a bit. This is the Northeast of England.

Back to reality. I am wheeling slowly towards a fellow wheelie along the promenade. This is sounding like a Hollywood movie. You’re picturing a romantic moment of meeting. The music swelling. But that is not the right image at all. I am approaching a complete stranger. Unless it is the Queen. I feel like I know her. She’s on my stamps and money. No, its not the queen. Let’s not be silly.

Do I smile, pull a face, ignore them, frown, scowl, say something? Hang on a second, who said that? I am British and an introvert to boot. Maybe there is a secret greeting for two wheelchair users. Are we like the Masons? Do we have a coded wheel bump, or twirl of the chairs that we are meant to do? Is there just a double right eyed wink? That could be tricky if you get it wrong. Just imagine you all take me literally and start doing that. I really need to know what to do.

Answers on a postcard to, ‘WheelsUp, Confused Row, Bea MY M8

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Above and Beyond

There are times when people do things that are above and beyond. They go out of their way to help you. Yesterday, Kelly from Persimmon Customer Care did just that.

If you read my blogs regularly, you’ll know I spend most of my time in a hospital type bed. What you may not know is its position. Right next to a double window. Late the night before last, the little plastic button that enables it to latch/open/close, broke. As our house is still under warranty, I emailed Kelly at Persimmon asking if she could arrange for it to be fixed. I explained that it was the one by my bed and that I am in that bed most of the time. The weather has been very variable. As wind/rain can blow straight in and onto my bed, it needs to be able to close. But it also needs to be able to open on these hot days.

I got an email from Kelly pretty early yesterday morning to say that she had contacted BPS (the window supplier/manufacturer/fitter) asking them to fix it. That’s the proper procedure in this case. I got a text from BPS about 20 mins later saying they would be out in 21 days to repair it!!

I phoned BPS and explained that it was the window by my bed, and I am disabled, and all the above about weather. Two hours later I got another text from BPS with an improved timescale, 14 days!!

I emailed Kelly back and told her all this and asked if anyone from Persimmon could help more quickly. She phoned me back within the hour. Kelly told me she’d organised for one of their customer care operatives, Ross, to come round that afternoon and fix it. When I thanked her, she said, that she couldn’t leave me by a window that doesn’t shut. Ross turned up about 3pm and replaced the handle. I realise that is above and beyond what they had to do. Persimmon could have left it to BPS. But Kelly recognised that it was a very real issue for me. She personally found a way to sort it very fast. I cannot commend her highly enough for that. Hence writing this blog, just to highlight what she did.

No Fingered Typing

I have a confession to make. Don’t get too excited. It’s not that. Or that. I never learnt to type. It’s not that either.

When I was doing my Open University course in English Lit and a Diploma in Creative Writing. I know, it is incredible that I am actually qualified to write. Who knew, not me. At risk of highly annoying any OU tutors who may be reading this; as if they would be reading it. They have given up on me years ago. I had better get back to the point. When I was taking my OU degree and diploma, don’t forget that. I was disabled and limited. Not as much as now, but significantly. Here’s an aside for anyone thinking of studying who is disabled. There are grants available to help you get any equipment you need to study. Which meant that when I started to study, they realised I was typing with two fingers and gave me a two fingered key board. I could just leave it at that and there will be loads of people trying to buy two fingered key boards. This is the problem with social media. If something is written here; it must be true. So let me be very clear; I was joking. There are no two fingered keyboards. Unless they sell them in the shop with the striped paint.

I hope that cleared up any confusion. In reality there will still be people who believe that there are two fingered key boards. Nothing I say will convince them otherwise.

I really must keep on topic. So the real thing that the OU disability grant gave me was voice recognition software. At the time that was Dragon Naturally Speaking. It enabled me to write and even use my PC using just my voice. Now you are all thinking, ‘so what, we can do that with Siri, Google and Word uncle Tom Cobbly and all.’ Yes, but this was a few years ago. Before every device chatted to you, morning, noon and night. Before you could say, ‘Siri, take a letter.’ And she would say, ‘what?’ Or you could click on a microphone button in Word and an icon sit pulsing, waiting for you to talk. This was even before you could have an argument with Alexa.

These days, I have Word. With that pulsating microphone button. The one problem I find… stage fright. It’s like you have walked out onto a giant stage. The audience is all staring at you. You walk up to the microphone ready to sing. Everything goes quiet. What do you say? Obviously I burst into song. Sorry, I mean that I start dictating amazing literature. The next War and Peace. Booker Prize here I come.

It is all very confusing. People assume because I blog, that I sit typing away for hours on end. In fact I chat to my PC for short periods at a time. Then it talks back, I tell it to be quiet, we eventually get an amazing blog together. Not this one obviously. All my secrets are now out in the open. I can’t type and I like talking to technology; who knew?

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In A Galaxy Far, Far, Away…

Star Wars must be the most disabled conscious movie franchise ever. Unrealistic and silly, of course. But, it has so many disabled people in it. Some play really major roles and are completely unlimited by their disability. Just think of Darth Vader.

Never mind blades or artificial limbs. Take a look at the reconstructive surgery on Star Wars. This was ‘A long time ago,’ not just, a long time ago, but, ‘in a galaxy far, far, away.’ Obviously one that believed in equal access for all. Now it’s true, they had slaves and they went around blowing planets up. No ones perfect. They also didn’t have the best environmental record. Any civilization that has a complete planet as a city, has issues. Then take a look at the amount of metal and technology in their garbage disposal. What about all the stuff they jettison every time they go to light speed? Don’t get me started on their waste of energy. Heating massive empty spaces with ceilings that disappear out of view. Come on evil empire, join the energy saving nations of the universe.

As for health and safety. I don’t think they had thought of it. All those balconies on space stations without railings. The bridges that retract. Then when they do extend, they have no railings. As for the idea of having a power station in your living quarters with an open access to fall into. That’s just asking for trouble. The Evil Emperor did very well not falling into it long before Darth Vader threw him in. That was an accident waiting to happen. Pod racing? Well, it makes all the sports we have look suitable for kids.

But I am blogging about disability. Which is just as well. So I don’t need to look at any of that. Darth Vader is a disability hero. OK, so he may have murdered millions of people. He had his faults. But, he was severely disabled. Only half legs, half arms. Major lung problems. He doesn’t just sound breathless, he was. Yet as he strode around the battle stations. Strangling disobedient Admirals, he looked fit as a flea. It’s just as well he didn’t need to pass any PIP assessment. He would have failed.

Imagine the scene. He would have sent the form back. Truthfully saying that he had no legs below the knees. No arms beyond the elbows. Serious lung problems (COPD maybe?). But with PIP they are not interested in what you have, but what you can do. So they would ask. 1/ How far can you walk. DV would answer. ‘Don’t waste my time with your puny questions. I have a Death Star to inspect. The examiner would check the size of a Death Star and put the answer down as 6 miles+. 2/ Can you lift a bag of potatoes? DV I will rip that generator from the wall and throw it at you. The examiner will look at the generator and estimate the weight at 3 tonne and put, yes. The rest of the questions would go in a similar way. When Darth gets the PIP refusal letter, he would lift the examiner by his neck and say, ‘your lack of respect disappoints me.’

It’s not just Darth who is amazingly able in spite of disability. Luke Skywalker has a false hand. Yet you would never know it. Luke’s Uncle ends up in a flying wheelchair. I want one of those. Why aren’t they around, a long time later, far, far, nearer.

There are even characters whose only human organs seem to be a human heart. That gives a new meaning to a heart transplant. Maybe they do body transplants? Disabled people may not get a blue parking space on Star Wars. But they get flying wheelchairs, robotic parts and complete new robot bodies. I am not queueing up to go to that universe. I don’t fancy everything that goes with it. But if I could pick and choose. Then either a new working body. Or failing that a flying wheelchair.

Oh well, A long time ago, in a galaxy far, far away… they had some crazy ideas about disability.

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The Unexpected Emergency – New version

I didn’t plan on giving Mary a big shock that morning, in fact really it was 111 that should bear the brunt of the blame.

The day started fairly normally, for me. It was 2006, it was the last time we were living in Hartlepool and this was before I had the downturn in 2007 that led to me needing a wheelchair full time. I had a routine blood test at the GP surgery. Except it wasn’t as routine as I hoped. Anyone who has had a blood test will know that the comment, “you’ll feel a slight scratch.” is absurdly optimistic. Most times, not only do you feel a very sharp scratch, but it also aches while they take several tubes of blood. That day I felt absolutely nothing, not the tiniest bit of pain. Not the needle going in, not the ache while it was in, not even the nurses hand on my arm. It’s been said before, I am very fast to react to such things and take action. So obviously I totally ignored it, didn’t mention it to the nurse and went home. I did think about it at the time. My thoughts went like this, “that was odd.” At home I thought again, “that was very odd.” So you can see, I was very on the ball.

Actually “that was odd.” Is a favourite expression of mine. I said it several times when our neighbours house was being burgled. I heard the break in, and I said to Mary, “you don’t see that every night”, as I watched the thieves walking down the road with a TV. My brain churns slowly sometimes.

My brain was working just as fast after I couldn’t feel my arm. At home, I rolled my sleeve up at home and touched my arm, it felt like it had been anaesthetised. Finding a pin I tried sticking it in various parts of my arm but it was numb.

Before you think I am a complete idiot I did wonder about a stroke. So I lifted both arms, which I could do, same strength. I could feel both legs. I looked in the mirror and smiled. My straight and goofy face smiled back. Obviously something was wrong, but it wasn’t likely to be a stroke. Mary was in the kitchen cooking lunch and over the years I had caused her enough panic with my illness. So I decided I would check it out with 111 rather than bother Mary about it. I think 111 was a different number at the time.

Our phone was in the hallway opposite the front door and by the stairs. I sat on the stairs. Mary was through the other side of the front room in the kitchen unable to hear anything as there were two closed doors between us. I explained to the 111 operator that I had a numb arm but I was sure it was not a stroke. She told me to hang on a second, then continued to ask questions. Before she had finished asking her questions there was a knock at the door. I opened it to find two paramedics standing there. We lived just half a mile from the hospital, hence the speedy arrival. I hadn’t even known the operator was requesting paramedics, so I was just a little surprised.

Explaining their arrival the lady on the phone said she had requested them immediately and let me go. I was taken into the front room and wired up to a heart monitor and had an oximeter put on my finger. Mary was still cooking in the kitchen with the door closed oblivious to all this. I was fully checked over, heart, oxygen, blood test. As always with any ambulance visit they offered to take me to the hospital for a full check up, but they could see what I had already said, it was not a stroke. I later found out it was one of the early signs of neurological damage I now know that I have.

It was while the two paramedics were standing over me with all their equipment connected that Mary walked through to say lunch was ready. She took finding two paramedics in high vis jackets, standing over her husband who was wired up to a heart monitor, extremely well. If she was shocked and horrified she hid it very well. Her jaw only momentarily hit the floor and her eyes were only a little wide. I’m also not sure it was a gasp she gave, it could have been a sound from the kitchen. The pressure cooker could have been on.

As I began it certainly wasn’t my plan to shock Mary and as you can now fully see it was really all the fault of the 111 operator anyway.

 

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