Entry 17: #LifecontinuesafterSCI

There are a few things that happen in life which can completely capsize your world. Continuing on from my last entry, which I hope perhaps gave some idea of what I mean when I say "capsize your world", I wanted to show that it is not all doom and gloom. I know that having children can turn your world upside down completely, having observed through a brief window how my friends have taken to parenthood. Life is never the same again. This is true of suffering from an SCI. I deliberately say suffering, although it may sound very "woe is me", because life is not made better by having one – unlike having children which is considered a blessing (most of the time!). However, I recently tweeted about some training I went on with The Backup Trust, and I used the hash tag of 'life continues after SCI.' It got me thinking about the fact that yes, life does continue whether you want to admit it or not, day in day out, life is passing you by. Or as John Lennon said:

I can't believe I am now in my fourth year of having this injury. It's just over three years and one month. And yes, my life has continued. I have continued with my friendships and relationships, spending time with my family going places and doing things with them. Craft fairs, cinema, getting blotto in the pub, shopping, eating out, visiting the seaside and more. Creating more memories that I will treasure in the years to come. I was fortunate to be able to have a puppy that I raised to adolescence… Before having to move him on to a more suitable home. The time I spent with him enabled my confidence to grow, my independence was able to re-emerge, and it's always nice to not be the only one in the household to have 'accidents'.

Moving house, relocating from one city to another takes a hell of a lot of planning, coordination, and teamwork. Making steps towards returning to work. Developing my body strength and stamina.

And that is just me. I wanted to give you guys an idea of the fact that life does continue after an SCI, and for those people who are reading this who are disabled or are in a similar situation as me I want to show what can be done. I've had a good look on YouTube, and I found some clips that I think will astound and impress you, because they certainly did me! We often get so bogged down with what we cannot do, that it can be very hard to realise there are things we are still able to achieve…

(the beginning of this video has quite a bit of chat – it is 10 min long, I would recommend watching it all – just to get a sense of the context, although the reason it's on here is to show the scuba diving wheelchair warrior!)

This is Tiffany Carlson– she is a writer and blogger and is in all sorts of magazines and websites. She is the owner of beautyability.com, and believe me her words of wisdom are well worth listening to!

depending on your ability and rehab, it is possible to get back behind the wheel! It may take a lot of work and strength training and stamina. You may need to pass another test. But at the end of the day the old adage is true – where there is a will there is a way.

and let's not forget Murder Ball a.k.a. wheelchair rugby… Primarily played by quadriplegics. If you can get a chance get hold of the film "Murder Ball" and see how it all started. of course, this is not the only sport you can get into – people in wheelchairs are still able to play more or less just about any other sport, go horseriding, skiing, and swimming. I won't start rattling on about the merits of taking part in exercise and sport for your health both mental and physical… We all know that it's better for you whether you're in a chair or not!

If you are disabled and reading this, I would greatly appreciate any comments (either by e-mail or the comments box below) that can add to the list of achievements and possibilities that are out there for people to realise that yes life does continue after SCI. 
The only limitations are the ones you put on yourself.

PS it's come to my attention that people want to leave comments, but can't due to not being signed up to Google. If you would like to leave a comment, then please e-mail it to me, stating whether it is anonymous or not, at the the address at the very top of the screen – TingleTetra@Gmail.com, and I will add it. :-)

Twitter: @Tingletetra

Entry 16

I used to think I could empathise. I used to think I knew. I used to think "I've had pain in my life, I can therefore relate". I used to try to be nonjudgemental. I used to do "My bit". I used to try to understand,
to walk a mile in the other's shoes. I used to think my prayers were heard. I thought my prayers were answered. I used to think I could help. I used to think I did some good. I knew I couldn't know how another person felt, but now I know it's impossible.

When I think back to how I saw people in wheelchairs, disabled people, people who have had their lives touched by some debilitating disease… I was such a fool. A self-righteous, assuming, selfish, narcissistic idiot who knew nothing. Nothing at all. I had grown up knowing mentally disabled and physically disabled people. I had worked for years with disabled people, those with both physical and mental challenges. Done voluntary work. Read books. Attended courses. Heard of other people's woes. Saw the adverts on TV begging to raise money that could cure, help, in any way improve the quality of life for whom they supported. I never gave. I had chosen my charities, I was doing my part already. You can't give to everyone.

There is a web which is spun that is as complicated as the nervous system and just as hard to navigate. The Web of Impact that stretches beyond what the eye can see, beyond what the ear can hear, beyond what the mind can understand, beyond what the heart can feel, beyond what the stomach can hold down. The web is spun in a continuous spiral with links, known and unknown starting from birth, and stretching out across the span of time. Each fine thread is so delicate, to be nurtured, to be admired and valued; its beauty, its strength, its radiance. Not to be wasted. The time spent creating it is the cost. The energy spent, the focus, the emotion invested. When Impact strikes the whole web is shook, no matter where the spider lays in wait, she will feel it nonetheless. There is no escaping the impact.

How could I possibly know? There is no way to know, unless you've been there yourself.

Unless it's you, your mother, your father, your lover, your best friend. You can't give to everyone and there are too many ways the human body can suffer. There are too many ways the human mind can shut down. Too many ways the human heart can give up. And the soul – what of the soul? Strong enough and the soul can be the driving force behind a complete restoration. But if it is weak, from pain and suffering and battles, another go on the merry-go-round and from sheer lack of willpower, the soul will quietly drift away. I was so arrogant. I looked my mother in the eyes and told her I was going to be perfectly fine, literally I said "nothing is going to happen!". It could never be me. So sure was I, so certain of the path that lay ahead of me. The direction my life was to take.

You never know what's round the next corner. I'd heard that line so many times that each new time I wanted to hit the person speaking. Of course, that was the context when people were trying to help me be patient; I wanted to fall in love and I'm still waiting. But you never know who's round the next corner…! If somebody had told me, had they warned me of the speeding minibus that would flip over three times around my next corner I wonder if I'd have given it any consideration at all. To be honest I think I would have still boarded my plane. I was that arrogant and held the assumption that I would be protected by a higher force. It could never happen to me.

And then the web springs into action. Letters of support, cards of condolence, visits with ice cream, and photographs, presents, piles of chocolate. I have no idea of the depth and breadth of pain my injury has caused to those people who are in my life. I had no idea simply of the depth and breadth of people who were in my life at all. Of the vast number who cared, even people I didn't know reached out to me. And I didn't deserve any of it. The suffering caused by my injury is beyond what I can imagine. I used to think I could empathise, I used to think I knew.

I now know that it was fruitless to bother thinking this way at all. I could not possibly comprehend what this hell is for another person; it is bad enough for myself. I sit at the centre of my web seeing how my injury has tested, shaken and torn my delicate threads apart. How life has rapidly unspun. Watching the actions and reactions, the vibes that come back at me, and the way the knocks keep coming. Any repairs are just patch jobs.

The web will never be like it was before. It is not just my body that is changed forever, nor just my life style, it is not just my heart that is broken and it is not just my life any more.

Entry 15: The Alternative…

Today I'm finally getting my hair done! Goodbye ugly roots, hello lovely highlights!

Roll. Sling. Hoist. Chair. Sling out. Coffee. Computer. Poo. Sling in. Hoist. Bed. Bra. T-shirt. Pants. Trousers. Roll. Sling out. Duvet. Sit up. Med's. Computer. Coffee. Lie down. Duvet off. Roll. Sling in. Hoist. Chair. Hair.

Hoist. Bed. Remove trousers. Remove pants. Remove T-shirt. Remove bra. Hoist. Chair. Sling out. Shower. Towels. Sling in. Hoist. Bed. Roll. Sling out. Bra. T-shirt. Pants. Trousers. Roll. Sling in. Hoist. Power chair. Dry hair.

It's a bit odd, because it's all backwards. The hairdresser came round two days ago and cut my hair. Now he's coming back today to highlight it. For those who have absolutely no idea of what goes on in the salon, you usually have your highlights done, then hair washed, then cut and dry.

Extensive research on my part (having peeped through the window of several hairdressers both in Liverpool and my current town) has shown that accessing a salon is near impossible for me. Certainly for what I want done, as every single hairdressers has their seats bolted to the floor by the sinks. And I have no way of transferring from my power chair to one of these fancy chairs to have my hair washed. So, we are having to be creative at home.

Hmm. The day didn't pan out quite how I described it earlier, but I'm very pleased with the results anyway!

and the cheesiest grin award goes to…

(PS it's come to my attention that people want to leave comments, but can't due to not being signed up to Google. If you would like to leave a comment, then please e-mail it to me, stating whether it is anonymous or not, at the the address at the very top of the screen – TingleTetra@Gmail.com, and I will add it. :-) )

Follow Me on Twitter: @TingleTetra

Entry 14: Dangerous Doorways

It was a very interesting week with doors. Now, in my little flat I have just about managed to learn to get through the narrower doorways with a twitch of my wrist and closely watching the positioning of my footplate and an armrest. Though I will admit there is no paint left on the woodframe from when I was practising! Women drivers everywhere have got a bad press; there are some fantastic female drivers out there… Not that I was one of them. Now that I'm in a chair though, and I have to drive it constantly, I would say I'm actually pretty good.

Photograph courtesy of Misha!

Given the lack of finger control/movement/sensation, the minute wrist action, the degraded muscles in my forearm and my dodgy tricep (ooo, and let's not leave out the random spasms that takeover completely from time to time) I would say I do a pretty good job. However, doorways are not designed for people in wheelchairs, especially given that nearly all are raised up on a step or even worse, a step and then a PVC frame that has two lips to get over. And unless a doorway was built back in the Tudor era or was built specifically for tiny people it's fairly safe to say that I can get through it, as long as I have no need to turn – bring in the turning circle and all of a sudden we're dealing with a different ballgame. The problems come when trying to get up that step and over the lip.

So, at my widest I am 66 cm. I don't know what the average width of the human being is but I think the widest point is at the shoulders. Having just googled it, I discovered the average width for a male is between 18 to 20 inches or 50 cm across the shoulders. So really I'm not actually that much wider than the average human male. Most people assume that I am incredibly wide, and granted I am wider than the norm. However, I am not a tank. It may appear that I am. But I'm not. I'm only 66 cm wide. That's 26 inches, just on 2 feet, two thirds of a metre, 0.7 yards, or 0.00066 kilometres. Not that wide at all really!

(example of ramp with small turning circle at the top)

Saturday I was showing some family members the sights and sounds of Bognor Regis. All we wanted was a place to get a hot drink and a sandwich. We parked at one end of the promenade and walked all the way up to the pier and back. Either the cafes were closed or there was no way I could get into them because of their HUGE FRONT STEPS. Eventually we found a pub that has a really lovely ramp. Wahey! Problem solved! But then at the door, we realised it was one of those funny ones where you open the first door and then it has a sharp right turn into the building itself. Turning circles need wider space. By this point we were so cold and I was a bit P'd off, that there was absolutely no chance I was not getting through that doorway. So, full speed ahead, I left a nice lovely thick groove in the wooden frame with a great crunching sound that had the barmaid running up to help and all the locals watching in amusement. As soon as we were all in, that's when we discovered they were not serving food…Grrr. We were shown out via a fire exit.

A threshold ramp would have been useful at this point!

Monday my mum and I decided we wanted a fish and chip supper, and as there is a brand-new chippy just around the corner we thought we'd try out. Arriving outside, we notice the doorway is already open, but yes, there is a little step. This time I don't really think anything of it because I have a "curb climber" on my chair which can normally deal with small steps quite easily. Unfortunately, whilst going over this threshold I managed to separate a wooden plinth from the front of the step. (I forgot to mention earlier that my wheelchair weighs over 95 kg, not including me! For you Brits out there that's almost 15 stone) The customers inside are doing a fabulous job of pretending not to stare… But all praise to the staff who immediately came to help and actually found it rather amusing. Apparently the step is being altered anyway, and that wooden plinth now serves as a mini ramp. Awesome! I broke the step and made it better!

Thursday was a shopping trip and visit to friends over in Southampton. By the time I reached my friends house both my PA and I were knackered from the shopping and driving through traffic. On arrival, the first thing my friends say is "have you got a ramp?" Which, bearing in mind I've had a car now for almost a year and been in this chair for over a year, you'd think I'd have actually gotten around to getting. No, I do not have a ramp. My bad.

not actual doorway, but to give an idea of PVC double lip.

I had not visited this friend's house before, and had been reliably informed by other friends that it had flat access. The flat access turned out to be a 10 inch step with an added PVC frame double lip. And it was raining. Why oh why can I not be more organised?! Very fortunately my friends live in an amazing house with grounds and were able to find two planks of wood that I could roll up to get in. Getting out was a bit more interesting as it had continued to rain on the planks of wood and they were now really slippery. Up over the lip and onto the wet wood and my front castors slid straight off. All praise due to my friends and PA who quickly grabbed hold of my chair (probably almost giving themselves a hernia in the process) to stop me completely tipping out and breaking both the chair and myself in the process.

So, the moral of this week's "attempting to share life from a chair" would be:

   
  Buy a portable ramp. If you're in a wheelchair, you're gonna need one.

     

PS it's come to my attention that people want to leave comments, but can't due to not being signed up to Google. If you would like to leave a comment, then please e-mail it to me, stating whether it is anonymous or not, at the the address at the very top of the screen – TingleTetra@Gmail.com, and I will add it. :-)

Entry 13: laughter is the best medicine, so they say…

Okay, so my last blog was pretty dismal and made for some heavy reading. For those who are at all interested in an update on how things are going:
the key worker housing association have waived the outstanding balance on their investment. (*Cue some jumping up and down and screaming with relief) My solicitors also waived their fee because there was no money left at all. In their words, "we just want to shut this case." – I guess it was starting to irritate them! So, it is as though somebody's waved a magic wand over my horrendous problem, and made it all disappear… Thank God!
so, the rest of the blog is as it was before… But this time I'm able to smile feeling a hell of a lot better than I did last week. Enjoy!

it would seem that currently everyday is full of these moments!

Now, one of the things I have wanted to talk about is the amazing fortune of having a) a laptop b) Internet connection and c) Facebook friends that send me very funny things. One of the many things that comes with life as a para or tetraplegic is a lot of time in bed. This could be for any number of reasons that are mostly health-related, and can also be because of depression or anxiety (which is my usual excuse). I've partly put this blog together to entertain any of my fellow SCI guys who were stuck in bed…I really cannot imagine what life would have been like as a tetraplegic without the Internet. 

Having had this amazing tool I have been able to gain back independence on so many levels – from being able to communicate with my friends privately, to completing my personal banking and possibly most importantly of all, being able to find a community of other people in the same situations as me who are able to swap notes on just about anything SCI related. Without wanting to shortchange people who have shown a great deal of empathy for my situation/condition, it is very true that  Nobody (and I use the capital N specifically) really understands or appreciates what it's like living with an SCI unless they have one themselves.

Anyway, this week's blog is actually meant to share some of the things that during last week's Hell actually made me smile and even laugh properly at times. Now I will try and put in the source wherever I can, but I will admit a lot of it came to me through Facebook. The first thing I wish to add is this:

https://www.facebook.com/the70s80s90spage

It is remarkable just how this description actually fits my childhood!! And there I was thinking it was just me, but it would seem there were many others who were of and around my age also going through the same… er… Developmental Process! Parenting skills and attitudes have clearly changed over the years…and as for computers and mobile phones, they were still the stuff of "Back to the Future". It genuinely made me smile remembering Baywatch and Gladiators… And good old Cilla Black and Blind Date! I can even remember getting a bollocking off my parents for coming in too late – yes, it was after dark! So, for anyone reading, who is not in Britain (yes, dear readers, my audience is now global!) this is a taste of Britain's culture for those of us who are now in our early 30s from back when we were in our preteens :-)

The next thing I would like to share with you genuinely made me laugh. It's a video that went viral, and I immediately shared it with everyone else I knew on Facebook. Quite possibly a large number of people already reading this have watched it once before through my sharing… But I don't care. This week's blog is about things which amused me during a particularly crap time and I would like to pay homage. Note to self – I must stop using the word 'homage':

Stolen from DJ… For teachers everywhere

I know that there are many guys out there who are bed ridden or housebound which frankly absolutely sucks. Especially if you don't have that many friends or family who will call round and take your mind off stuff. There are hours and hours to fill in a day when you don't have a job, or you have nothing to do because you cannot use your hands or your feet and in some cases, you can't even breathe for yourself…. It's bad enough having to live life by another persons rules; I know some teachers find it really irritating having to have their lives dictated by bells, but that's the rhythm of the school. Imagine if the rhythm of your breathing was controlled by a machine. Granted, thanks to that machine you are able to live, but still you cannot control when you breathe in and out. Why am I rambling on about these things? I think because I want all the AB people out there to realise the enormity of what it's like living a full and satisfying life, to then having what feels like a life that is empty – you are no longer doing things, it is other people, or even machines that do things for you. There are so many personal things, for instance, men – presumably you usually shave your own chin? Ladies, who put's in your tampons? Get my point? So on that note, it brings me to another Very Amusing video. This one is definitely one for the ladies, and any gay men out there :-) 

And then of course there is the flurry of photographs, and "statements" that are going around and are quite popular at the moment. As a Led Zep fan, this rather amused me:

and in honour of my mother coming to visit this weekend:

Mum, I've got your bottle of medium dry chilling. After all it's the least I could do!

Okay, so last but definitely not least is a video that had me chuckling from start to finish. I read a piece on a certain sheriff in the US who keeps getting re-elected because he's really clamped down on convicts and the jail that he runs. Instead of costing the taxpayer loads of money by building a new jail, he instead designed one out of tents. Apparently one of the inmates was overheard complaining about the heat that they were having to suffer, and the sheriff's response was that the Army out in Iraq was suffering in the same heat if not hotter, laying down their lives for their country. Now, I don't know how much of that is true but what I do know is that they certainly haven't lost their sense of humour (the military that is, not the convicts!). And here's a video to prove why:

 There might be a little bit of the theme going on with having seminaked men all over my blog this week – but hey a girl has to do something to cheer herself up :-)

I hope I've been able to make some of you guys smile today too x