Reflections on 2019

Warning: this post contains religious thoughts. If you aren't happy to read those, just pass on by. I won't be offended.

I saw two similar Facebook posts yesterday, both asking what we are grateful to God for in 2019 and what we are hoping for in 2020. I always think gratitude is a good discipline to have, especially when things aren't so good. So I thought it would be good to genuinely reflect on this and write something meaningful on the theme of gratitude and hope.

2019 - gratitude

Andy and Ruth's wedding

Forever photographically etched onto my brain, is the image of Andy's face when we told him we had to move back to the UK. The fear in his eyes matched the pain in my heart. Andy and I moved back on 14th June 2013. The first Sunday back, we went to church and that morning, Andy met Jonny. Almost instantly, they became best friends. It turned out they were both starting sixth form college in September and that was where Andy met Ruth. Jonny and Ruth had been friends for many years. It wasn't long before Andy and Ruth were dating.

When Andy gave his speech at the wedding, he talked about the time they all met and how Ruth saved him during this most difficult time in his life. The wedding itself was just beautiful. There was a strong focus on this being a marriage of three... no not Jonny... a real acknowledgement that God was in this marriage too. Given that Jonny was not able to be at the wedding, which was live streamed to the ward where he was having yet more chemo, I felt that the whole day was a real statement of faith. Their relationship, their friendships were based on some of the real tough stuff of life, and yet Jesus was still at the centre of it all. It is lovely when our prayers are answered the way we want them to be, but I think there is something utterly amazing that happens when we stand on our faith even when life doesn't dish up what we ordered.

So the first thing I am grateful for is Jonny and Ruth and their respective families. 

New job

In September 2013, I started studying for my Master of Arts in Online and Distance Education (MAODE). I graduated in May 2018 and began looking for a change of career - a move from teaching into eLearning design and development. 2019 began knowing that I was starting my new job at the end of January. Whilst learning a completely new role hasn't been without its challenges, I love what I do now. I particularly enjoy the nature of project work, seeing a whole project from beginning to end and having a finished product that I can be proud of. 

I was a little shocked that almost immediately after starting this job as a junior learning designer, both of the seniors left. I was even more shocked to find that when I mentioned possibly applying, the manager practically bit my hand off. So after 5 weeks in the job, I got promoted and have been working with our main client almost all year. 

I think many of us will have undertaken some form of eLearning - GDPR, health and safety - at work. Somebody obviously created all those generic training packages. That's unlikely to have been me. I make bespoke products for a very specific client group. So when they identify a gap in knowledge or a working behaviour that needs to change, they ask me to build an eLearning package on that theme. Sometimes those themes can be quite difficult and challenging stuff but I like knowing that real people doing a very difficult job will be using what I produce and that it will help equip them for the daily realities of their role. 

So the second thing I am grateful for is my new job.

Family and Liggy

It sort of goes without saying that I'm grateful for my family and friends... but this year, I have felt it more than usual. In the years following my cauda equina syndrome, adjusting and adapting to living with a disability, I have gone through something that is referred to as the grief cycle. This is often presented as a graph - a nice, neat graph with a start and end point. It goes up, then down and finally goes up at the end. This has not been my experience of grief and disability. For me, it would be more like drawing the two axes for the graph and then handing a 3 year old a pencil. My grief cycle has been more of a scribbled mess than a nice neat graph! Sure, there have been many good times, positive times, times of achieving things... but there has also been pain, physical pain, tiredness, frustration and fear. At those times, it has been so important to have my family around.

I'll start with Neil and Liggy. They are with me all the time and enable life to go on, with a reasonable degree of independence. I honestly cannot imagine life without them both. I often think back to our wedding and that promise to love in sickness and in health. This situation, though related, is neither. I'm not sick but it's not health either. Sickness either gets better or ends your life. Disability is different. It doesn't get better or worse... you just have to eventually come to terms with its permanence. Of course, as a Christian, I believe in healing... I've seen healing... but God doesn't heal everyone of everything. That has been part of my journey but is too personal to share. All I will say is that I have peace with the situation as it is and am confident that God will use it rather than remove it. In living with this, Neil and Liggy have been my constant support and strength. Neil somehow juggles the very challenging situation of being 100% husband, 100% carer and also working full time. I honestly don't know how he does it! Liggy has the advantage of being all dog. She never tuts, sighs or shows disapproval. She just picks up after me, dresses and undresses me and looks into my eyes with love as I shovel fishy treats into her mouth. It's a beautiful relationship!

My wider family play a different role. I sometimes feel that nobody just treats me like a normal person. Nobody knows the real me. Nobody expects me to achieve anything. My family are different. They know the real me... the me that is nothing to do with sticks, crutches and wheelchairs. When I cross the road for no apparent reason, they saw the big bunch of nettles and understood why I crossed. When I come in from the garden, faster than my legs or wheels will carry me, they know that a wasp appeared three gardens down the street. They know the good stuff too. They know that I can teach a child to read and write and do maths, even when everyone else has given up on them. They know that once I have decided to do something, I will fight to achieve it with everything in me and will stop at nothing to do what I believe is the right thing to do. My family always start from the assumption that I can, whereas most other people start by assuming I can't. 

My family has been through everything. Love, separation, divorce, remarriage, halves and steps - so many you forget who is who... and yet, we all get on well, enjoy spending time together, somehow negotiate the minefield of various allergies so that nobody gets sick from a family meal. And there is so much love. That's why I am grateful for my family. I should say 'and friends' but to me, my closest friends are family. Family can't just be about blood. If it was, I would have a very small family. But I don't. I have a big family!

So finally, the most important thing... I am grateful for being part of a big, loving family.

2020 - Looking forward

The question asked was what I want God to do in 2020.

Jonny

Andy's best friend Jonny is still in hospital and although there is light at the end of the tunnel, he's still very poorly. If God only does one thing this year (which I seriously doubt) I would love to see Jonny fully recovered and back to his usual cheeky self. I can't wait for that day when we do something fun... all of us together. There will be food, music, laughter... and most of all, loads of banter!

Church

Yesterday, we went to our eldest son's church, the church we went to when we first moved back to the UK. It's just that bit too far for us now. It's a 90 min drive minimum each way. The welcome we received was amazing though. When this was our church, we were fully involved in the life and community there. Although I regret that I never joined the worship group, as that is where my heart really lies, I did youth work, led parenting courses, just normal stuff. It's also a church full of normal people. I don't mean normal Christians. There is such a mix of people there... including a seriously nutty element. What they lack is Kelloggs people. You know what I mean? Like the Kelloggs adverts - mummy and daddy and 2.4 children, all sitting down together for breakfast. The perfect family! I don't think there is a perfect family there. It's a place where it's okay to just be who you are. Vulnerability and reality are important, and that leads to the kind of hugs we got yesterday... the kind of hug that whispers a thousand words... that communicates that I have missed you soooo much! I've been through something and I wish you'd been here to walk through it with me... 

We're kind of settled in a church. It's a nice church with lots of nice people. We know people... their names, at least. I wouldn't say we're involved though. We visit on Sunday mornings. That is partly because we meet in a rented space. We don't have our own building yet. But maybe it's also because the church lacks nuts. I don't think we have a non-normal element... and that disturbs me slightly. 

So in 2020, I would like one of two things to happen. Either a miraculous move back to where we used to live, so that we can move back to nutty-land. Or for our church to reach out to those who haven't got it all together... the hurting, the vulnerable, those who are mentally ill, those who have nothing, those who really need a saviour. 

Looking further ahead, the fact that we have to drive a minimum of 45 mins (30 miles) to access an Elim church, just seems wrong to me. I would love to see a day when every Elim church... when every church... is accessible. It's not just about step-free access, though that would be a good start. Toilets, the auditorium, the style of the service... not just for wheelchair users but for everyone... Yesterday, we witnessed a church where so many people had physical impairments but they could get in and access church. That's what all churches should be like. Jesus did once allude to the idea that it's those who haven't got it all together that need him most. It seems wrong that our buildings so often shut out those who need him most... and where the buildings don't, the people sometimes do. 

So what I want to see in 2020 is an improvement in accessibility to church, not just for me but for everyone.

Contrasting trips

I have undertaken three trips away in the last two weeks, and they have really highlighted the difference it makes when access has been thought through.

Trip 1

The first was a two day (one overnight) visit to one of our clients. I drove both ways (about 260 mile round trip and although not everything went according to plan, on the whole, it was a very positive trip. So what made this trip go so well?

Planning

The trip was planned well ahead of time and I was very clear about my needs, particularly regarding the room for the night. I let them know in writing that I needed a wet room, level access, and that Liggy would be with me. The client knows me well and did her part in ensuring that every meeting, activity and meal would be in a suitable space. 

Responsibility

As I said, not everything went to plan. In spite of measuring my wheelchair, there was part of a corridor that was too narrow and this made accessing the accommodation difficult. However, our host immediately took action, was very apologetic and ensured that alternative access was in place as quickly as possible. 

Training

This venue was very busy. There were lots of people there for all kinds of different reasons. There are also many working dogs on site, and because of this, everybody knew not to distract Liggy and to largely just ignore us. It was possibly the first time we have ever been in a packed restaurant and had to queue for ages, and nobody tried to pet her or even just stare at her. I wish the whole of society was this well trained and self-disciplined. They were brilliant!

Trip 2

My second trip was also just one overnight and was more of a personal outing. We were booked to speak at one of the Canine Partners carol services on the Friday evening. The venue was beautiful but also not without some challenges but it was a wonderful evening. Then we spent a night in a hotel before spending the whole of Saturday at Chatsworth House.

Fitting in

I always enjoy Canine Partners events! There are other people with mobility challenges and lots of other dogs. It could be difficult with getting everyone in and out and managing all the dogs, but it just works. The dogs are dogs so they usually want to greet each other and all the owners but they are all quite used to knowing when it is time to settle down and lie quietly. If your dog needs a bit of time out, everyone understands that. If you ask someone to leave you alone for a bit, they don't get offended. They know what it's like. I always feel more normal at these kind of events. People (disabled and otherwise) get in and out of wheelchairs and nobody thinks they are faking it. It's just normal life. And I feel normal, which is nice.

Accessibility is a choice and is usually possible

The church was part of the Chatsworth Estate and we also spent time in the house and gardens. It's an old building. It's a listed building. It's quite hilly. There is every reason why they could pretend that it's not possible to make it accessible. However, it is one of the best places we go for access. The staff are well trained and so helpful! The building and gardens are wonderful! We all had a really relaxing weekend.

Trip 3

The final trip didn't go so well. Granted it was 4 days (3 nights) so longer away, and Neil wasn't with me, but there were lots of things that spoiled it and shouldn't have done. It was a work trip but it wasn't work that was the problem, mostly. It was just general stuff... but it all happened at once. I will say it was Edinburgh. If you have to travel there and have access needs, just plan a bit more carefully, just in case.

Food

Okay so food is always a bit of a nightmare for me and only other people with allergies really seem to understand. My drama started on the first evening in the hotel. I'd booked dinner and was looking forward to an evening with my colleague who had travelled with me. My allergy is a natural food colouring (carotenes) which isn't on the usual allergen list. I looked at the menu and picked the nearest meal I could find to a possible option - salmon with hollandaise sauce, new potatoes and mixed green veg. I was fairly sure that if I omitted the sauce, I'd be fine but I thought I'd better check that the greens didn't include kale or spinach (which, as it happens, they didn't) so all should have been well. 

Asking the question caused all hell to break loose! The waitress couldn't take my order (my colleague appeared to turn invisible, as nobody took his orders for the rest of the evening!) so had to get her manager. He turned up with the allergy book and seemed a little put out that I had the audacity to have an allergy they hadn't got on their list. I explained that I know what it's in so just need accurate information but this didn't really help. After several return trips to the kitchen and pictures of ingredient lists on his mobile phone, he eventually took my order. This all took 30 minutes.

We waited and he returned with a laminated disclaimer which I had to acknowledge so that if I died it was my own fault. Then he returned to inform me that they had to cook my meal from scratch so they didn't contaminate it. That would take another 30 mins. During that time, my cutlery was confiscated and replaced with clean ones (I would rather hope for clean cutlery anyway)! Eventually we got food but by then I was very shaky and didn't really enjoy my meal at all. Plus I felt like a leper!

All this was repeated for pudding, which I wish I'd not bothered with but had paid for in advance.

The next night, I decided to eat elsewhere. I'd seen a KFC (surely you can't go wrong with KFC) and decided to walk there. I set off but as I got closer, realised it was in the middle of two roads off a very busy roundabout. I got closer before realising there was no crossing and no dropped kerbs. I ended up buying a weird concoction of items from Tesco and eating in my room. Again I didn't enjoy it.

The last night, I preordered the exact same meal that I had on Sunday, as it seemed the most likely way of getting food. The meal was okay but I still felt like a leper and had to have my cutlery confiscated.

Edinburgh doesn't do dogs?

I managed with Liggy at the hotel and there was plenty of grass around for toileting, though when I asked on arrival (because it was dark outside) the lady on reception told me there was no grass but they had an accessible toilet. I asked her if she was sure she wanted Liggy to use a hotel bathroom and she finally twigged. Not sure why she thought I would want to pee/poo outside, but hey ho! Liggy was on best toileting behaviour (thankfully) and peed and pooed very willingly on demand. I always have bags and pick up and put it in a.. Where are you supposed to put it? There are no bins... anywhere. The hotel was opposite a railway station in a busy area. Only one bin and that was well out of reach for me, behind a load of tables. It was a letterbox style bin and literally the only one. I tried to aim but my aim isn't what it was. I even told the staff, in the hope they might move the bin or the tables... but no. They seemed quite happy for me to aim badly and leave them little black bags of poo all over their decking. 

The area around our offices was even worse. No grass, pebbles or bark anywhere, except the cemetery. And absolutely no bins. Day one, I took Liggy in the cemetery. She only peed. There was a sign banning dogs but assistance dogs should be exempt, right? Day two, they had chained all the gates shut. The weather was also foul that day, and I had to try to persuade a dog that is trained to not just pee/poo anywhere, to go anywhere.

Blame the weather

On the final evening, by the time I got back to the hotel, I had had a very difficult day. I'd hurt myself several times trying to overcome barriers that should never have been an issue and I really just wanted to eat my preordered salmon and go to bed.

Traffic was awful and I dropped a colleague at the airport, so I was whacked out when I got back. I got my chair out and assembled it and headed for the door... only to find the whole entrance fenced off. Eventually I realised I was going to have to wheel all the way round the building to the other entrance, so I set off, less than happy. 

In the car park, they have spaces for coaches. A lorry was parked in one but the front of his cab overhung the pavement, blocking my way. Once I'd got Liggy fed, I asked at reception what had happened and whether they knew whether it would be fixed by morning. I was really concerned about how I would load the car by myself. Without the diversion, it's very difficult. With it, I was worried that I would end up even more hurt and my pain levels were already sky high! 

The man at reception seemed very angry that I had the cheek to ask and immediately defended the hotel, blaming the weather. I know he can't control the weather! I'm not stupid! I just thought he might know whether it was just a precaution or the building was falling down, or somewhere in between. I guess I was also hoping for a pre-emptive offer of help in the morning. Not likely! Fortunately, when the time came, a different chap was there, who was considerably more helpful and kind.

The weather caused other difficulties on the drive home. Automatic doors at one of the service stations were broken (but left closed, rather than wedged open). At another one, a path was blocked by a sign that had blown.

I get that weather can't be helped but this really was just a windy, rainy day. We live in a country where wind and rain happen, not just occasionally but often. So why can't we build buildings that don't have flimsily attached metal bars on the side and cover motors with some kind of insulation to protect them. I'm pretty sure that if aeroplanes were built with so little care, people would start complaining! And if the weather does cause problems, would it be beyond the wit of man to think through access for people like me? Would being helpful and kind be so difficult?

Election

I woke up this morning to find that our pretty good Tory MP, Andy Percy, has retained his seat. I've never been a Tory voter but he did me the courtesy of engaging in a brief conversation on social media last night. I don't even know how I feel about the election result but I do know this...

There are too many battles to fight. Whilst Edinburgh made me angry and caused more physical pain than I should have to endure, there's no point in wasting my energy fighting battles so far away. Andy Percy promised me he would raise issues that affect our local area. I am going to decide what are the most pressing issues and try to get his help in fighting some battles. Because life can be easy or difficult for people with disabilities of all kinds. We can blame the age of the buildings or the weather but at the end of the day accessibility is a choice. Those who are in power either care or they don't. Society either cares or it doesn't. 

I see a repeating post on Facebook. Loads of my friends share it. The idea is that if I'm ever suicidal, they will stay up all night to listen to me. They will be there for me. They care. They all claim this applies to everyone... strangers even. I don't need you to stay up all night. I just need you not to be the last straw. And I think that applies to all of us, but definitely people living with disabilities. Just try to make life easier sometimes. People seem to like to be seen to be helping. That's sometimes great but even better to build a society that enables people to manage without help... without getting to the end of their rope.