Entry 24: Every Eight Hours

The original idea of this blog was to share what it's like living in a chair with my able-bodied friends, and also any kind of support or tips I could possibly give to people out there who are also living with an Sci. I'm afraid I went a bit overboard this week bombarding Facebook with SCI awareness stuff, in an attempt to raise some money for The Backup Trust. Setting up the "Just One Day in a Wheelchair" challenge, and seeing what the response was in general from, well, everyone, was really interesting… From those who got completely behind the idea in aid of raising awareness and money to those who saw my countless images/videos/reminders and happily ignored it because it's not something directly linked to them – there is after all something of an emotional distance when looking at something online (kind of like when you text somebody rather than phoning and speaking directly to them). There were those who thought it was almost outrageous – how could a person who is able-bodied possibly understand what it's like Living with an Sci, just sitting in a chair is actually the easiest bit of dealing with it. As one person said, and I am totally copying and pasting their words here:

 "I'll make my donation a £100 if they sit  in shit (preferable a loose movement) and piss while out somewhere like a shopping mall , party and have to get home and washed and changed without standing up."

Which kind of nicely sums up that end of the spectrum really.

I think it is true that people simply just don't know – because why would they? – They really think that having an Sci is just about sitting in a chair. When actually in many ways the chair part is the easiest bit. I won't deny that I had quite a few issues with being in a wheelchair, with being pushed around, and then when I was finally in a power chair I felt like I had become like Davros himself – incredibly ugly, incredibly conspicuous and taking up an elephantine amount of space. In fact it's the lack of dignity I suppose, and lack of privacy, that can be the hardest thing. No sensation telling you that you need the toilet, therefore accidents occur. Even the best routine in the world cannot control the body if the body wants to eject its contents one way or another. And I would say it is a very rare and fortunate person with an Sci who has never had a public accident. Yes, I've had them. I have both peed and pooed in public, in front of my friends, in front of strangers… And yes, I have no dignity left – so I may as well share this with the whole wide world on the Internet!

I remember I was having a phone call with somebody who I was connected to professionally, and they asked the general "how are you?" question. Because I was so used to just telling it as it is to doctors, nurses, parents, friends, PAs, I didn't stop to think not to share what was happening with my latest bowel movements. I remember there was a slight pause on the end of the telephone and then being very politely told that I don't have to share everything and a simple 'fine' would have sufficed! I think I did actually have the grace to blush, and made a mental note that not everyone is aware of the Bristol Stool Chart!

There are the spasms, when your muscles suddenly go into rapid shaking mode. For some people these are incredibly painful, for others they are incredibly dangerous because they can actually spasm out of bed/out of their chair/hit things in the local vicinity. Opinion ranges from being glad of having spasms because it helps maintain muscle tone and can be a form of exercise to absolutely hating it because it's so painful and disruptive. In the last few weeks for some reason my spasms have changed in my right leg, probably something to do with muscular tightening. At night time just as I'm falling asleep it feels as though someone has grabbed my ankle and yanked on my leg. The first time it happened I very nearly did shoot out of bed with shock… I totally thought there was a poltergeist in the room pulling on my foot! Either that or my PA was playing nasty tricks on me! Now it's very hard sometimes to actually straighten out my right leg. And this is not a good thing.

Problems with kidneys due to all the medication can arise, and in my own particular case due to restricted lung capacity, be highly susceptible to chest infections and pneumonia. I mean, essentially, the list can go on and on with the day-to-day issues of living with an Sci. It's not just about not being able to walk. And that's without even broaching the subject of accessibility, skin issues and people who are able to walk, the ones with an "incomplete Sci", and thinking about the differences between paraplegics and quadriplegics.…

So I'm going to end this week's blog with my last video clip that I uploaded to YouTube For SCI Awareness Day. It is almost 10 min long, but I do ask that you would watch it through and consider donating just £1 towards sponsoring my friends who are taking part in the "Just One Day in a Wheelchair" challenge. The money will go to a charity that not only helps people come to terms with all of the things I've mentioned above, but actively helps people to break down those "I can't" barriers and live a full and active life in any way they wish to. 

http://www.justgiving.com/justoneday-wheelchair

http://www.backuptrust.org.uk

Entry 23: Fixed Point in Time…

Birth certificate, marriage certificate, death certificate. The three certificates of life. Interesting how life itself, particularly in those early years, is marked out by licenses and certificates… Getting your general certificates in secondary education, a drivers license, the pieces of paper that say you're qualified to do X, Y, or Z. If you're lucky you may have a collection of birth certificates belonging to little creatures you have produced…

There's a reason it's called the human race. And there's a reason why there are those who are perceived as winning it, they are financially better off, or better off in a more holistic way such as having a loving family or active social life. Those who are 'doing better than others' are those who are apparently more satisfied with their lot. I guess it all depends on what you personally count as 'winning', or making it. Born out of an innate need inside each of us is that competitive edge to win our own personal human race. You might only be racing against yourself, just wanting to achieve your own personal goals. You might be racing against your siblings wanting to outshine them, or against your friends. Or you may have found that competing is just too hard and so have given up and dropped out of the race.

One of the hardest things for myself is being a fixed point in time.

I have felt this way for a very long time, well before I first became injured. It was as though I was stuck in one place at one time of my life and I was watching everyone around me move forward or onwards with life's little certificates of progress. It was very strange at first watching my friends get married. And then the momentum, the pace of people pairing up and settling down got quicker and quicker. Why I was not one of them is very hard to say, except that it just wasn't meant to be. However I have now entered that time when I am now watching from afar as each of these people produce Sproglets of their own. Life moves forward for them, or it just changes, as I watch some people change jobs, move cities, and in one unfortunate case a marriage breaks down. But me, I'm fixed in one point of time. Nothing changes. Even my hair has not changed since my teenage years!

The creator of the ultra-successful sitcom "Friends" has recently stated that there will categorically be no movie of the programme. She stated that the programme was about a time in your life when your friends are your family, and that that time had passed… Monica and Chandler were married with children, Phoebe had gotten married, Ross and Rachel had had a baby together, Ross even had a child with a former wife. The only one really who had stayed the same was Joey, but thinking of his character he was supposed to be the Eternal Bachelor. Well, I suppose if life is imitating art, that makes me The Eternal Bachelorette!

If I'm really honest when I read about this I actually felt really sad inside because my friends were my family. I spent so much more of my time with my friends than I did my relatives throughout my 20s, and in many ways I relied on my friends more than I did my family simply because of the nature of the relationships I had. I'm very proud of my friends, and I believe the quality of the friendships I have is amazing. Unfortunately, that just means I will miss them even more now that they have moved on.

Priorities change. Family means more, because blood is thicker than alcohol or coffee, lol. And I've noticed as I entered my 30s that I want to be closer to my family. I worry about their health. I want to know my parents better, I want to understand my roots more. And I wish that I could have a family of my own.

Instead, I'm sat inside my very own Tardis, although it is disguised as a power wheelchair and not a blue police box. I make an excellent companion… Whizzing around from place to place, throughout time, helping people where I can. In the late 1990s it was India, throughout the Noughties it was the homeless in Sheffield, it was the lost children in Peru, it was the depressed in Huddersfield and teenagers in West Sussex. And now in the Teenies (!?), Thanks to my own personal accident and situation, its people living with Spinal Cord Injury. The Doctor you could even say is disguised as my PA and regenerates on a regular basis. (Although some of the PA's I've had I would not offer such a distinguished title.) Perhaps that is stretching the metaphor a little bit far!? I have not collected life's little certificates of progress.

So, in the spirit of helping those with spinal cord injury I would ask people who are reading this blog to consider the following – Friday, 17 May Is SCI Awareness Day in the UK. I have challenged my friends to see if one person will step forward (pun intended) and spend one whole day in my manual wheelchair to raise money for The Backup Trust. On the just giving website we will place videos and commentaries updating the progress of what it's like throughout the day, the various challenges faced and things that the able-bodied person taking part discovers about living in a wheelchair. And if nobody does step forward and do it, then I would still ask for donations, because there would have been awareness raised of the difficulties faced every day by wheelchair users.

http://www.justgiving.com/justoneday-wheelchair

Entry 22: In the Beginning…

This week I had a lot of time reflecting on dealing with having an SCI. Which sounds crazy, in that you'd think I was always reflecting on it but in fact most of the time I'm just dealing with living with the SCI. Management is the key. Life with an SCI requires a great deal management – time management, skin management, care management, equipment management, medication management, and physical/body management. I'm sure there are many others out there who could add to the things that they need to manage when it comes to dealing with their particular SCI. In my last blog I mentioned how I control my thoughts, especially at night time, so I do not think and dwell on the negatives and the loss of my former life and body. However this week I had reason to go back there, to return to that place when I was initially injured and consider how I got from lying in ITU with tubes up my nose and a hole in my throat to living day-to-day life out in "The Community".

"Dealing with it" is I suppose the key phrase here. I was luckily placed in a specialist unit for SCI, who were geared up completely for dealing with each and every one of the things on that tick list. There are no right or wrong approaches, simply because every person is different and will deal with their SCI differently. It's interesting because I don't actually remember fighting with thoughts about never being able to walk again. I do remember the stabs of pain at the thought of never being able to run again, but that was because in the last couple of years of my life prior to my injury really gotten into it. For those who know me of old, they will know that exercise and me never really mixed! And so to lose something that I had so recently become passionate about, that was physical, was quite bitter irony.

I do remember at times I would forget I couldn't move, and I would unconsciously go to turnover in bed, or reach out an arm to grab something only to suddenly find I couldn't feel let alone move my fingers. These moments didn't happen very often, however; it was as though after the very early initial shock had worn off I had somewhere deep down accepted I could not move and therefore did not bother to try. Instead, for me, the loss and bereavement, the stages of grief I went through were for everything else connected to not being able to walk and move that I seemed to feel.

There are those who are never able to accept this and continue to fight with the idea of never being able to walk again. Often these are people who were previously very physically active, but also they may be eternal optimists. Or just possibly in huge denial. On the other hand it is those who continue to battle for a cure for paralysis that raise hope for us all.

I spent some time reading some research that sums up the initial and long-term impacts for people with SCI quite neatly. It says "long hospital stays with separation from loved ones, altered appearance and attendant identity readjustment, possible stigma, psychological shock and trauma, chronic pain, physical and functional impairment and the need for a long period of physical and emotional healing." The research states SCI patients have similar impacts to burns victims.

Each one of these things in that list just by its self can cause a person to give up because they have no way of dealing with it. So how does a person who ticks every single one of those things off on that list somehow manage to scrape themselves together and carry on? I would have to say in my personal experience it is having a goal, or the will and drive to want to carry on, no matter how small it is compared to the things weighing you down, having that drive, finding a reason to carry on, having that something to cling to, or just simply making the choice to do so because the alternative is worse.

Some days it really is just making The Choice.

Yesterday I had to battle my way through a very busy shopping centre to acquire some new clothes. I had to deal with the onslaught of AB people at every turn, whilst ignoring the stares and the sideways glances, having to suck it up when I would see my reflection in the mirror – having what I would call 'spacky hair', to go with my 'spacky arms', my 'spacky shoulders' causing my coat to sit awkwardly on me and thereby looking even more 'spacky'. My legs sat in a spacky angle, with super-skinny knees growing into flat-fat thighs. Not being able to tell if trousers would fit me because I could not try them on in the changing rooms… And finding my new body shape does not lend itself to smart jackets – at least not if you don't want it to look spacky. My confidence completely drained, and it was all I could do to not turn into a puddle on the floor. I constantly had to take hold of my mental self to fight those negative thoughts and concentrate on the task at hand. I will admit that the shopping trip in my opinion was only partially successful.

So… "Dealing with having An SCI" – to say that it's complex is a bit like saying quantum physics is a tricky subject. And in the beginning, although it's one of THE hardest times you will ever face, and they tell you it'll get easier…what they mean is "you will move on, you will find coping strategies, you will have better days and worse days, you will do things again – but no matter what, it is always going to be difficult from now on in one way or another."