Weekend in review

Wow, what a lovely few days I’ve had. The two nights I had at home managed to turn into three, which was fantastic. It’s honestly absolute heaven getting time in your own environment when you’ve been in a clinical one for so long. There are people who spend much longer in hospital than me, and hats off to them, but this is enough for me.

Saturday started with a mad rush; Sarah decided at 8.30 that we were going to the cinema to watch nothing other than Toy Story 4. Great! The only problem was getting myself ready usually takes a lot longer than the allotted time. Oh well; we managed. Amelia seemed to really enjoy herself, and that’s what it’s all about. The reward for me sitting through the film and not complaining came in the form of butterfly chicken and chips, courtesy of Nandos. Much more my style. From there, we headed to Smyths for a look around, and we all left with something new and shiny. Amelia with a barbie, me a very nicely reduced to clear xbox game, and then for us all a Nintendo Switch. Sometimes, you just have to treat yourself.

Sunday progressed at a slightly less frantic pace, with us meeting my dad and step mum for breakfast. Whilst you can’t beat wetherspoons for it’s prices, you certainly can for the warmth of the food. Perhaps it’s so cheap as they only pay half the electricity bill… whatever the case, it was at least edible, and it’s the company that counts. Another lovely morning passed. The rest of our day was to be spent bowling and, despite giving ourselves plenty of time, we still managed to be late. Nothing new there. I also managed not to come last! I’ll admit I had the bumpers up… and half the time Amelia took my shots… but still. It counts. From there, we took to pizza hut, where the food was much more amicable. We did all this with our friends Lucie, Aaron and Jack, with only Abi missing. This bunch goes to show it doesn’t matter if you’ve known someone forever or for a day; good friends are there no matter. Love yas.

So, on to today, where I find myself back exploring the innards of this lovely hospital. There’s not a great deal else to do if I’m honest. I’ve had my therapy for the day, caught up on plans for the week, and now I’m back doing what I do best; nothing. It’s Sarah’s Mum’s birthday today, so I’m sad to be missing out on that. I’m sure she will have a lovely time regardless. Happy birthday Sue!

As I start to come toward the end of my hospital journey, I find myself thinking about plans and what I want to accomplish both short and long term. For now, I’m focusing on rehab, and adjusting back to life. Long term I’ll figure out as I go. One thing I am focused on throughout though is educating those who don’t know, or dont understand, that being in a wheelchair is not a burden. I’m privileged to be alive, and I’m happy to be here. I’m a person, not a chair, and I will be seen as one. #seethepersonnotthechair is going to be a big part of what I do, and If I can help just one person I’ll be happy with that.

The only guy who had the bumpers down won… I think cheating was involved.

On the verge

Well, the time is drawing near. There are whispers in the halls, hushed voices at desks, and fleeting glances in the direction of a discharge letter…

Previous experience has taught me that getting my hopes up results in disappointment, so I’ll not do that. What I will do is take stock of what’s happened since the last escape attempt, and compare it to where I am now. By doing that, even I can notice the improvements I’ve made. Again, I have been told I can be too self critical, but I see that as a strength. The ability to appreciate improvement whilst baring in mind the distance I’ve yet to go is something I’m working on l, and I genuinely do feel as though I’ve made significant gains in my abilities. Being in a chair certainly isn’t as simple as sitting down all day, despite what it looks like. For example, today I practiced what to do when the inevitable happens and I fall out of my chair.

To practice, my physiotherapy consisted of me getting from the floor to my chair. That sounds pretty simple and straightforward but in reality is rather taxing. First, I have to move myself from my chair to the physio plinth using my arms and transfer board. I then ‘safely’ got on the floor, again with only my arms. After using benches and other assorted items to lift up and down, I managed to get sat on the cushion from my chair, then a bench, then back into my chair. None of this would be remotely possible without the amazing physio team I get to work with. That being said, it still takes a lot of effort from me, and it’s bloody hard work.

Anyways, I’m off home for the weekend. It may only be two nights, but I’m excited. Peace, comfort of my own home, no regimented timetables… heaven. More importantly, I have some proper family time at my disposal. I plan on relaxing, hopefully catching up with some friends, and generally starting to adjust in conservative hope of the discharge finally happening. I hope everyone has a great weekend!

Community spirit

Since starting this blog, and being on Twitter, I’ve seemed to come across a lot of people in similar situations to myself. By this I mean people in wheelchairs, people with disabilities, people who advocate rights for those who can’t advocate for themselves. On the whole, these are lovely, positive people with kind hearts and good attitudes, genuinely trying to make a change and get their voices heard, much like myself. However, as with everything, there are a few bad apples. There are a few toxic people out there, shamelessly promoting themselves and their own agenda under the guise of ‘activism’. And I can’t stand it. (Pun intended).

Being in my chair, I’ve come to learn what the term ‘ableism’ means. Essentially, it is discrimination in favour of able bodied people. I’ve not experienced it first hand, but I’ve been led to believe, by these keyboard warriors, that simply by being in a wheelchair I am a victim of this discrimination, which simply isn’t the case. I AM a person with a disability, which in itself is no issue. I am a person, and I am me. That is it. Nothing more, nothing less. I don’t expect preferential treatment, or to be regarded differently. I have needs to be met, and beyond that, I want to be treated the same as anyone else. The law is the law, and needs must be met. Other than that, those with disabilities do not particularly deserve any sort of preferential treatment. Lots of people are lovely and go above and beyond to help, but there is no expectation from me to do so.

The problem, I have so far found, Is that people don’t realise or understand that a disability does not make people stupid, or different, or needy. People don’t need pity, or attention, or anything. I by no means speak on behalf of anyone else, I just say things how I see them. For example, the other day in a toy shop, two little girls completely engrossed in their finds almost walked into me. Just before they did, what I presume to be their mother shouted down the aisle to “mind the wheelchair”. Not “mind that man” or “watch where you’re going”. I normally wouldnt have replied, but I quickly told her I was a person, not a chair.

We need to just be nice to each other, remember that a person is a person no matter, and all go about our business being as considerate as we can for others. I really do need to stress that 99.9% of the community I have joined is fantastic; the support offered by others with spinal cord injuries and disabilities in general is overwhelming. I just can’t abide the air of entitlement from some people.

I am very much an open book. I try to be as honest as I can about my life and injuries, both on here and in person. If anyone has questions, I much prefer people to ask. I imagine that most people in a similar position to myself are the same. All we ask is that you treat us fairly, with dignity, with respect, and with compassion. And that is all anyone can ask, able bodied or not.

Places and People

It’s strange how you meet people in places you don’t expect. What I mean, is that despite being in hospital (which, let’s be honest, is not a nice place) I’ve met some incredible people. One such person is a Doctor who’se gone out of their way to make time to help me introduce my daughter to my injuries, and taken time to really help me come to terms with my new life. Another is a lovely nurse who is not only a genuinely kind and caring person, but even thinks about my daughter on her day off and brings in ‘Frozen’ hair clips and bubbles to cheer her up. Yet another, a nurse who is close to my own age and takes the time to regularly have chats with me because she knows we get along well. There are many more incredible staff, and over the course of this blog I’m sure I’ll share a few more stories.

However, this one is not aimed particularly at staff, but other patients. One patient in particular actually. A gentleman I shared a bay with, just me and him, for a few weeks. Now, this gentleman was a good few years older than me, he was a retired miner to be precise. He was kind, thoughtful, caring, but most of all he was gentle and warm. I trusted him immediately, and we became good friends in my eyes. He always complimented Amelia, he checked on how Sarah was doing, and he always had time for a chat. Even when he was feeling down we would sit in our wheelchairs and put the world to rights. He was due to be going home in a few weeks, back to his lovely wife, and he was so excited. Unfortunately, this was not to be.

Without warning, my new friend became very unwell very quickly, and was moved from the bed space opposite me to somewhere the staff could care for him better. Unfortunately, despite everything, he became worse, and then there was nothing more they could do.

He didn’t deserve that. I’m not blaming anyone and I don’t know details, but he didn’t deserve that. It was an absolute privilege to have met you; in the short time I knew you, I couldn’t have asked for anyone to help me more than you did. I can only hope that I helped you when you were down.

Rest In Peace, Tom. I won’t forget you mate. Cheers.

Unexpected Surprise

Well, I’ve had a lovely few days. What started off as a bit of car shopping on friday finished with me spending a few nights at home! Although unexpected, it was very much welcome and, unbeknownst to me, very much needed. When you spend a long time in a place like this, despite everyone’s best efforts and intentions, you do begin to become institutionalised. It simply can’t be avoided, but going home helps reset that and avoid it becoming a serious issue.

Having had my tea at home friday night, Sarah and I put Amelia to bed and, with Grandma keeping watch, we headed back to the hospital. Once there, we discovered a miscommunication had led the staff to believe that I was on home leave. Seeing a good opportunity, we took full advantage and, with a small pharmacy’s worth of drugs in tow, we headed back home. No complaints at all from either of us, it is a brilliant feeling to have a bit of reprieve from the monotony that is life in hospital.

Saturday consisted of much of the same; a quick trip to hospital, then out as fast as possible. This time we headed to the Audi showroom, where another contender made the list in the form of a Q2. As if the car choices weren’t already hard enough! After much swooning over the crystalline effect from Sarah, we headed home where one of our friends dropped by. As if we weren’t in a good enough mood, he added to the good feeling by inviting us to the evening of his wedding later this year. We both are very much looking forward to it. As it always does in these situations, time ran away with us and it was gone 9 by the time we said goodbye; another nice day over all too quickly. However, I guess, the quicker time passes the sooner I’m out of here, which is always good.

This coming week will be much the same as the last god knows how many I imagine; physio, OT and more physio. I know on Tuesday I get to go to hydrotherapy which is always welcome, so at least I have that going for me. I just can’t wait to move on to the next chapter of my life now, and start to put these months behind me.

Road Trip!

Today, Sarah and I had a lovely trip out, all the way up to sunny Newcastle! Our mission: my driving assessment to decide what controls I need/like, and check I am safe to drive using hand controls. Safe to say, the mission was a success, and I am one happy Sam!

Our day began with Sarah collecting me from the hospital, and we headed for a Mazda dealership. The last few days we have been looking at cars available to me under the Motability scheme, and this was the next on our list. We actually ended up in SEAT, where the Ateca quickly caught our joint eye. Spacious, comfortable and stylish, it ticks all the boxes. The problem now is that we have three cars in mind, the aforementioned Ateca along with a Skoda Karoq and a Nissan Qashqai, and we haven’t yet looked everywhere we need to. But oh well, there’s worse things in the world than being spoilt for choice.

Once we had looked and got some prices (surprisingly reasonable) we headed for the open road, otherwise known as the A19. After a pit stop at McDonalds, we reached our destination of the North East Drive Mobility centre. I was greeted by two lovely ladies (whom I won’t name as I forgot to ask permission) and from there, my assessment began. We discussed my medical history, my needs, my medications etc and how all of this affected my ability to drive. Despite having no use of my legs, they quickly put me at ease that I would be at no disadvantage by driving with my hands. We moved on to talking about my driving experience, what I wanted to gain from the day, and how they could help me. There are many options available for those requiring hand control over a vehicle, and rather than talking theoretically, we headed for a car.

My steed for the day was to be a mighty Honda Jazz, obviously known as a force to be reckoned with in the car world – or maybe not. Despite having all the power of a sleeping slug, I was surprised at how spritely the little car was. It was kitted out with 3 separate modes of hand operation, and before anyone asks, yes it was an automatic. We headed out of the garage onto a purpose built mini track, which was a figure of 8 design with different road features and obstacles such as hills and tight turns. I was going to try each of the available controls one by one on the track, and decide which I liked best.

The first option I tried was a trigger accelerator and push brake combo, operated with my right hand, with a steering ball on the left. There were controls for indicators, lights and the horn on a remote also on my right hand, which was a very good setup for me. It felt strangely natural, and after a few laps I was beginning to feel rather comfortable. I also tried a different steering ball; one with controls for all the vehicle’s electric functions controlled by the left hand. I didn’t fare so well with this; it felt uncomfortable to try and indicate and turn with the same hand, especially considering it was less of a ball and more a teardrop shape. Next, I moved onto an over- ring setup; a small ring above and just inside the steering wheel, which accelerated the vehicle when pushed inwards. The brake control was the same, and I was back to indicating with my braking hand. Of all the options I tried, this was by far my least favourite. It felt awkward and clunky, and my control was not anywhere near as smooth as it was with the trigger. I did manage to improve in the few minutes I tried it, but the feeling of a lack of control remained, so that option was binned. Finally, I tried a ‘ghost ring’ option: similar to the over ring, a disk was fitted behind the steering wheel. This time, however, to accelerate the disk could be twisted clockwise or anti clockwise, either way resulted in a purr from that Jazz engine. This felt very unnatural at first, but as I looped round and round, it jumped ahead of the over ring. I felt I could master it with more practice. With each option, I tried turning both ways, speeding up and slowing down, and a hill start. I guess it counts as cheating performing a hill start with an auto box, but I enjoyed it all the same. After trying all options, I had to pick which configuration I liked best as we were going to head out onto the mean streets. Obviously, I chose the trigger and normal steering ball. After a quick emergency stop test, we were off!

I headed out of the centre, and into a nearby housing estate. Although it’s only been 5 and a half months, the rush I got from being back on the road in control of a vehicle was immense. I suddenly forgot all about my injury, and felt like myself again. We weaved around the housing estate for a while and, all too quickly, it was time to return to the centre. Even those short 20 or so minutes out and about really did remind me of why I loved driving. I even reversed back into the garage, just to prove to myself I could still do it. One of my assessors said I took to the new way of control like a duck to water; what a lovely compliment that was.

We then headed back inside, where after a few more discussions about control options, I went on a simulator rig to try one final method; a push/ pull bar. It’s exactly as it sounds: there is a bar held on the right side of the wheel, the car accelerates when you pull it and brakes when you push it. Although not a true representation as the rig was ageing a bit, I quite liked this method.

After a bit more chat getting information about adaptation specialists and other options available, it was time to leave. I can’t thank the staff at NE Drive Mobility enough; the option of being able to drive will really help me, and the ladies looking after me couldn’t have been any more professional, friendly or helpful if they tried.

It was then time for myself and Sarah to head home. It was great getting to spend a day out with her; although she couldn’t come in the car with us, the drive up and down gave us time to talk, and we even had a mini date stopping for some tea on the way home. I’m lucky to have her to run me around to appointments like these, it would be so much more difficult for me to have such a good quality of life if she wasn’t here next to me. Love you babe!

Overall, today has been a huge success. Admittedly I was very nervous, but I soon relaxed with the help of the centre staff and Sarah, and I really enjoyed the whole experience. If you ever need their services, the centre comes highly recommended. Now, all that’s left for me to do is to save up and get a car and my adaptations, and you’ll never stop me!

Plans and Preperations

It’s kind of hard, planning for a new life. I have no idea what I’ll want, need, have, the list goes on. The more I think about it all, the more confused I get! Aside from big, permanent adaptations like a wet room and ramps, what will my home look like in 5 years? These are the questions that haunt me.

My first aim (I think) is to make myself off-road capable. There are many products available to people like myself, from hand bikes and power assisted wheels to clip on front tyres and chunky mountain bike wheels. The problem I am facing, like anyone with a similar disability can vouch for, is that being a captive audience means you pay through the roof. For instance, one item I am interested in is a wheel that attaches to the foot plate of your wheelchair, lifts the front castors off the ground, and makes it easier to push across rough terrain. Great! A brilliant idea, an elegant solution to a real problem, and a few hundred pounds for the luxury. To make it truly versatile you need to pair it with some proper mountain bike style rear wheels, setting you back even more. This is just the entry level to the spectrum though. The product style I would really love is similar; a front wheel that lifts your castors, except this one is battery powered and has handlebars, essentially turning a wheelchair into a trike. Absolutely incredible! And once again, a small fortune for the privilege. Oh well, I’ll get there in the end. I just really dislike that items so great cost the earth making them virtually inaccessible. Perhaps one day I’ll come up with a solution and be able to help others get what they need.

Another thing I am preparing for, as previously mentioned, is getting a car. Whilst very excited, I’m also very nervous. To paraphrase Spiderman, With independence comes great responsibility. I’ll have to fend for myself, and that is a daunting prospect. It’ll be an exciting opportunity, and I really can’t wait to get out and about again, but still.

What a rant this has been! I guess with the end of my hospital tenure drawing near I’m realistic in my apporoach; my new life starts when I roll out the front doors. It’s like driving lessons and your test I guess. The lessons teach you to pass the test, but you only really learn once you pass.

On a positive note, I finally got to meet some of the firefighters on scene at my crash, and say thank you to them. I knew them in passing from my work with the coastguard, but so shake the hand of some of the guys that kept you alive against the odds is a truly surreal experience. Thank you again, if you’re reading. On that, a challenge for everyone. Next time you hear of an accident, are passing a station, or see a fire engine out and about, spare a thought for the people behind the uniforms. They truly are everyday heroes.