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."