Behind the Eyes

Writing blogs about others can come so easily, I think it is a way of diverting the camera to others rather than on oneself, after all, there aren’t many people comfortable having their photograph taken or even self-portraits. However, as I listen to the Labour Party Conference my mind drifted to the last year, after all Ed Balls was saying nothing of interest. A year ago my physical condition effectively collapsed and I became desperately ill with Pneumonia and honestly nearly didn’t make it. But along with this I effectively collapsed mentally after working 20 years of 20hrs days, even to say it makes me now think how ridiculous I was to work that hard for so long, and certainly it had been 10 years since I had had a holiday, if not longer.

Anyway, physically and mentally collapsed, and it took months to even be strong enough to get out of bed, and that situation gives one a lot of time to talk and reflect, and I have found myself trying to give my wife, my guardian angel, insight into what it is like to have a disability, as I never really talked about it before, I felt it was moaning, and a part of me still does. But the point is I have learnt to let my guardian angel in, into what is happening behind my smile, my professional mask, my comments of, “am fine, just tired” when asked what is wrong.

I always thought that even those that loved me most did not want to be immersed into the detritus in my head, the effluent that often comes with having an uncertain future, a degenerative condition, increasing inability to self-care. But I was wrong, she, they, did and do want to know, all have encouraged me to share this so others have some insight too. I was once one of those arrogant professionals that thought they knew all the clinical signs and symptoms, effects and affects of conditions such as mine, but when I developed this degenerative condition I quickly realised I had known nothing, nothing at all. I genuinely felt ashamed of how I pompously gave advice out based on my ‘clinical’ knowledge, when I really didn’t know what was going on ‘behind the eyes’ as they say.

The physical side of disability is there in your face, you can’t miss a guy my size in a red/pink wheelchair cruising down the hill with a look of panic on his face as he remembers he hasn’t put his gloves on, so any breaking involves losing skin or one can crash, the look of panic changes to one of, “oh hell with it, E=MC2 means I’ll stop one way or another”. Yes the hunks of tubular metal making up ones charmless, enforced chariot is a bit of a giveaway. But so are other outward giveaways of disability, twitches, jerks, muscle spasms (and those are just the guide dogs), white sticks, crutches, hearing aids, signing, walkers, walking sticks, Zimmer frames, and I could go on for more than a page – all visual alerts to notify the unaffected that they are dealing with an individual dealing with negative effects of disability.

I sometimes wonder whose anxiety levels are higher in these first meetings, initial contacts, the person you’re meeting with when they realise you are disabled or the disabled person who realises how nervous the other person is. But once they look beyond the physical and realise my turrets is just my excuse for swearing a lot and has nothing to do with my degenerative spinal cord condition, the meeting usually goes off ok.

I have had it said in a moment of panic as they saw me manoeuvring in my metal, mobile, monstrous, sculpture of tubular metal (which wouldn’t look out of place in some modern Frankenstein movie) to get into their meeting room, “Oh I do wish you had told me you were (the penny drops that this is a bad thing to say), well I mean (this is usually when they start sweating and spluttering a little), that you used a wheelchair (and they finally get it out from choking them in their throats)”.

When I am in a playful mood I have said, for my own amusement, “Why, what would you have done differently?” It seems I usually get one of two reactions, both accompanied by an impression of a large carp gulping for age:
1. One with extreme flushing of colour to the face as bright and hot as a chilli pepper;
2. Or, the colour drains as they go a shade of grey that could never be flattering, even when grey was the new black (or so they tell me).

But both spectrum ends of colour is always accompanied with the gasping fish impression, a total lack of works coming forth, mostly vowels sounds if I am to be honest, and a look of embarrassment that has only ever been surpassed by a Barclays Bank CEO in front of a House of Commons Select Committee.

But there is a much, much deeper percentage of people where you would not know of their disability unless they felt comfortable to tell you about it, I mean people with mental health problems, people living with ME, MS, MD, dementia, brain injury, epilepsy, need I go on. But adding to this group are those too with physical disabilities, the mind is as equally as broken as a spine is until one gets help; the mind is shattered by degenerative condition with a side helping of fatigue and anxiety about the future that is so uncertain; people living with pain day in day out.

I, and many others, face a daily, the first battle every day before one can even get out of bed, the balancing act between pain control and dulled level of consciousness from chemical intervention. It’s a balance between having enough medication/chemical bludgeoning to be able to function with pain as a mere background noise, or having too much which effectively means one’s ability to think and engage is lost. But there are times when I just want to withdraw as I can’t deal with the pain, and my mood drops as a result, as I wonder what the purpose of life is to exist like this.

For me the worst times are at night, I go into a world where self-pity rules, negative images and views of self, poor self-esteem cowering in the corner, a time of torment and self-loathing, with a pulsing of low level pain all the time, rippling through my body as my mind is filled with demons. Sometimes in the darkest of night time hours, where the only noise is the cat breathing, I feel betrayed by my own body, it traps me in this rotting case of malfunctioning flesh, muscle and sinews, and it is quickly followed by my mind becoming the enemy as it floods with negative thoughts, self-pity and self-loathing. Then the blame game starts where I can find no answers:
“Why me?!?”
“What did I do to deserve this?!?”
“What have I done to others to deserve this living hell, this punishment?!?”

I never seen to find answers as I search my soul, my mind, they never come, instead I have nightmares, vivid, horrid, nightmares that torture my mind even further. Must be my subconscious being judge and jury, then delivering swift punishments, as some nights I am afraid to even try to sleep, as I know pejorative condemnation awaits me. They call it anticipatory anxiety, but it really doesn’t help to know that, as when these dreams of horror, these nightmares of terror rampage through me, they surge and raise to new heights my fears and anxiety – best to be avoided at all costs even through lack of sleep in itself makes the pain worse, the mood lowered, the self-esteem plummets.

So when people ask how you are, does one tell them, I mean really tell them, giving them the insight I have given to my angel, should I say, “Well my life ranges from being in the middle of hells fire and brimstone to living on the suburban edges of hell at best, with one wheel definitely in hell zone.”? Do they really want to know sometimes as I smile and rattle through meetings because I have had no more than a couple of sleep for the last 5 days and I want to cry? Do I help them understand that the physical stuff they can see and register is nothing compared to the effort it takes to force a smile and words of politeness, and under the mask I am actually screaming in my mind?

The physical I was kind of prepared for, as much as one can ever be prepared for a degenerative condition that changes your life and the lives of your loved ones forever. The mental effect, the unseen effect as one tries to give the impression it is business as usual, fighting the effects of the drugs, the condition related fatigue and the sleep deprivation, just so you can string words together and not seem like a complete tool, that I wasn’t prepare for. Now it’s one day at a time, one hour at a time, fighting hard until I have to give in to it, it being the condition, and then the self-loathing for giving in, just can’t fight when your mind is running on empty re motivation. So I withdraw, I question what is the purpose of life, what quality of life is this.

I do recognise, even though I experience a haze of medication and pain, that my mind is more active at times now, even if in a negative gear at night, but definitely stimulated from a commercial perspective. Perhaps being trapped inside a decaying body has stimulated certain parts of my intellect. It makes me think about that phenomenon that occurs sometimes when one sense tries to over compensate when another sense fails. Since I was at death’s door a year ago, trying to miss the wielding scythe the Grim Reaper who was aiming at me, and my physical condition had deteriorated, that perhaps my intellect is trying to compensate for it. Or perhaps I just have to think more when it comes to everyday life, as I have to involve planning with every aspect of my life thanks to my physical condition, I remember writing previously that the only spontaneous thing I can do now is to chuck spontaneity out of the window.

I think I objected when I became increasingly disabled, or is it more accurate that I became objectionable and obnoxious, maybe my mind is so active and pushes and pushes because I want people to see beyond the wheelchair? It’s a rhetorical question, but I want people to realise that it is not just a physical condition we fight; it is a mental condition holding hands with my decaying body, so perhaps a little understanding is called for. It a complex multi-faceted relationship between mind and body that is placed in a churning mix of pain and degenerating functioning. Remember that in there, behind the eyes there is a real person, with real needs, that wants your understand, not your pity, but a little consideration that just to get out of bed takes more effort and guts that you can possibly imagine.