Being a Saturday it's appropriate for me to take some time to write about the week past. Alex, my son, is staying with me for a few days to help with his study for GCSE. In an effort to instil some discipline, I have him getting up early and going for a run each day. So far there has been some progress and we advanced a few subjects. Today we will do Systems and Design and some English.

We have had some good heart to heart chats and I constantly taken aback by the good character and nature of this 16yr old. I can see in him a quality that you seldom come across today, humility and a good heart.

Linda, my PA has raised the topic of another job. It turns out she is looking at ads. Well I can't stop people from advancing and I would not wish to hold anyone back but it is distressing and would require a big upheaval.

My reaction has been muted and I am very aware of the potential for me to use emotional blackmail. For this reason I come across as not really bothered. I suppose there is no reaction that will not be open to misinterpretation.

Empty

How do I write something when feeling so empty? Boredom and discipline drive me to communicate. I live a life with the appearance of order and purpose. It is expected. There are many who I share my world with, they need me to be happy.

I have an inner world that is unlike any world I can describe. I have many well worn areas which are in daily use. They are familiar, automatic and necessary. The forbidden zones are no longer safe and contain predatory roving psychotic thoughts thirsty for destruction. These areas are neighbours to the red light zone. Purposeless journeys into the red light zone can often stray into the forbidden zone and get hopelessly lost. This dangerous mistake can take days to recover from, never without scars.

Next to the red light district is a playground. This is a healthy place. Perspectives and proportions are easily maintained. The playground has no dark areas. It is a place of magic, of 24/7 sunshine. Spending time in the playground can be easy with some people. Others seem to shy away from happiness and prefer the endless traffic circles in the run down slums. This is a wasteland of grumpiness and self-pity. All the roads here lead to the forbidden zone. So, in my world I stay away from here.

Where am I today? I don't have a clue. I feel like an obsessive gambler, dumbstruck and numb after a poor day at the races.

Stimulation

OK let's talk. I have Alex on the IBM typing up some work and we are going to discuss this after he has finished. We plan to watch a bit of football before refining it and going on to the next part. There are 4 more days of school remaining before the Easter holiday. During the break he will spend the time here revising his School work. I hope that he can stick to the schedule I have for him!

Haven't been at my best lately and the recent wet weather has not helped. I don't understand what's happening to me; as, my stubborn refusal to think of myself as disabled, is beginning to weaken and I don't like it! I know that I desperately need something more but I don't know what. To be so confused is disabling enough!

Society has developed the treatments for maintaining a life but insufficient understanding on supplying the tools to deal with this truncated existence. I need more than just existence, I need purpose. Stimulation, whether it be mental or physical, just amounts to masturbation, unless it is for a purpose or it is shared.

This will be my greatest challenge and the only one that I must achieve in order to move forward.

This week my gardener arrives after the winter break. I plan to get the spring planting started , parsnips, sweet corn, squash, potatoes... Any ideas?

Don't really have much to say. Life is dull and the work has been slow. I plan to watch the 6 Nations Rugby later. I spend the day with Alex tomorrow to help him with English Revision.

Damn it's tough to drag yourself from mindless, fruitless pursuits especially when a world of frivolous patisserie are just a click away. Discipline is especially tough considering that choices of independent activity are so limited. My wanderings in cyber space are made even more vain and unproductive by the disproportionate effort and time they waste.

So I return to writing. Describing the lonely existence that accompanies paralysis. I know it will be difficult to convey my world and even more difficult to comprehend.

I sat in my bathroom this morning, thinking. I thought about the day ahead, about the week passed and about the empty, nagging thoughts that seem to consume my moments of solitude lately. They are thoughts which lead nowhere. They have little purposefulness. They succeed only to remind me of my helpless, ineffective state and the devastating loss of my situation. They always end in me asking God for forgiveness. I have no idea what for, perhaps for my shameful self-pity.

In any case a cup of coffee awaits and I must go.

To write a blog one requires dedication. Sometimes despite your feelings and agenda you have to put your mind into the space. The space where you give of yourself. A space which can be difficult to reach. This is particularly true of a personal blog.

There are days like today when the heart feels heavy and afraid of opening. When dark melancholy and loneliness prosper and rule the thoughts without mercy. This is such a day. I write not because of exuberant outpouring,but of sombre duty.

My account will be factual and truthful but lacking my normal levity and wit.

Last Saturday I took Colleen and the children to London to a show at the Dominion Theatre. It was a show Carmen had seen a few weeks earlier and wanted to share with the rest of the family. So I told her to organise it and she did. The picture is taken just before we left.

Thanks Forthsay, for for your comment. I haven't seen this but I will investigate.

Anyone ever come across something like this? see site />

The thing is, how to maintain enthusiasm or progress when you have little or no reward? You need a source of fuel to keep up the supply for your "motivation engine". I find this tough. Tough because there are people in my life with better options and opportunities, yet they will take any opportunity to explain to me why they are unable to be happy. This I don't mind.I just wish that sometimes I would hear about the good things, about the blessings and the smiles. Too much negativity makes any experience worthless and tiresome. Far better to enjoy 1 plain biscuit with your tea than to have 3 chocolate biscuits which you don't appreciate and savour. Every blessing is precious.

Talking of blessings, my cousin Erica paid us a visit last week for 5 days. She was a ray of light. The time we had ended far too soon and her bond and obvious pleasure with meeting the children made me feel very grateful and ever so slightly homesick. Equally, the love and closeness felt by the children, especially the girls, very good to see.

I remember well the love I received as a youngster, on a visit to her family, about 30 years ago. This had an important role in my life. Reassurance and love with demonstrative care is a sustaining positive influence in life and can have a powerful effect if it is within the broader family.

Erica left on Saturday and on Sunday morning I was due to drop Alex at football and take the girls back home. Well for a change we were ahead of matters, on a bright, crisp Sunday morning. They were packed up, finished with their chores and were having fun taking snaps of themselves on the trampoline when I called them in for a quick cuppa before leaving. It was after this that things went wrong...

We were all in the car ready to go and the car wouldn't start, flat battery! I immediately told Alex to phone Colleen to see if she could help. We got out the car.

Colleen had plans and was reluctant to change them. Having told the coach we would be late we got hold of the roadside assistance for my car (Chrysler offer this as standard) . They indicated that we would have less than an hour wait. With that, I called the kids together and offered the option of a fun day in the sun with Ice Cream later or a long drive to take Alex to play his match. I was genuinely surprised that without hesitation the girls chose football. They offered this simple explanation when quizzed, "It's too important to Alex!"

One look at his face would have told anyone that.

Hope?

Research in nerve repair Nerve By Pass

Tell me if you know more about this and any possible contacts. Thanks.

I feel like I am going quite crazy. The memory of "woman " can be like a knife in the heart. I know that I have so much to be grateful for. I have a great home, good care, enough to provide my needs. I don't want for any more...

but the heart and body don't seem to obey the rules of logical argument. Neither the rule of sensible persuasion. In fact they are as relentless as a Siberian Winter and don't ever get tired or distracted. Attrition wears out the bravest man, eventually.

Logic is a poor weapon against this fiend. My remaining strength relies on sustenance by faith and hope. When "the thorn in my flesh" burns and festers, I resort to the hope and faith which has carried me when my weakness is exposed.

Ahh well, ...

The week ahead is school half term. My children have a week off school I have 3 days of work and then some time off. On Monday my uncle Hilbert's granddaughter arrives for a 5 day visit. I have never met Erica but I last saw her mother, my cousin, 30 years ago. I am looking forward to it.

The past week brought nothing new but the continuation of some project work. I am training a new carer at the moment but I hope to have a better solution soon. More later.

It's a bright sunny day but icy cold. I am finishing off at some work then I am going to watch rugby (start of the 6 nations) .

I have my kids around for dinner tonight. They don't want to stay over. So Colleen will join us and take them back.

I really don't have much to say so I will end off.

"Do not be too timid and squeamish about your actions. All life is an experiment."

– Ralph Waldo Emerson

I did a presentation yesterday. I was making a revised pitch for a project. It was a receptive audience which made things easier. I ran out of breath halfway, so at the appropriate place I gave over to Linda, who presented some of her work, then I recovered enough to finish. They loved Linda anyway. We also presented some work with a Video production company. As it turns out a reasonable sized project.

Well we were successful, and now the work begins.

John came over last night we made dinner and watched Atonement. I enjoyed it even though the sadness, unfulfilled hopes and desires were so cruelly and needlessly destroyed through a thoughtless, selfish act by a little girl.


Why didn't the skeleton go to the ball?

Well, he had no body to go with!

This may be a joke but truth is I really miss my body. To run, to flop down on the lawn and read, to hold someone and feel part of them. When the words "to be alone" are a chance to enjoy doing your own thing instead they fill me with concern. Don't get me wrong, I love having time alone but only if I have something I can do. This requires setting up or some assistance. So when I am alone, the sense of loneliness is so physically present that I get bombarded by negative and depressing thoughts. As a consequence I hate having half an hour unplanned time on my own.

Dreary day. Overcast and cold. I had my children over last night. The last few weeks have been a mixture of rush and work and apathy.

I don't really know what to write. I normally use the blog to talk about my life in a wheelchair, the purpose being to keep my friends and family up to date and to provide an insight and record of the experience. In many ways I don't perceive myself as a disabled person and will often feel like I am just observing. This bizarre situation is part of the experience from highly active independence to disabled dependence.

Recently I was informed by someone I hold in high regard that I am self-obsessed. Admittedly the comment did come at a time of conflict,but it threw me off my stride. This was an indication of the significance of the remark. Have I become self obsessed and inward. Are my needs more important than others? I knew I had to solve this question, for I do not wish to be like this.

I cannot honestly say that I am not selfish and do keep certain treats aside for my pleasure but I do not accept the charge of being self obsessed. I am far too aware of the needs and feelings of others. I don't know if you have a view on this. Those that know me and those who don't; tell me your opinions.

It's a Saturday. A reasonable sunny but cold start. Overcast and cloudy now.

I thought I would spend a nice quiet day just catching up with myself. You would think that would be easy (after all, how fast does a disabled man move?). It's not easy, I have still maintain the ambitious work output and goals I have always had.

I had a break earlier ; pancakes and coffee. Hmmm, hot pancakes with a sprinkle of sugar and cinnamon and a squeeze of lemon. Rolled up and then a dribble of chocolate sauce and washed down with a cup of Columbian coffee.

So last night, I'm all stretched out on the wheelchair, about to do a few arm excercises before I put the wheelchair into a stand position, and the doorbel rings .It's John my neighbour. He has popped in to wish me a Happy New Year, so he says, but I think he was hoping for a glass of wine. Anyway, I decided to ask him and Linda over for Dinner.

We had an impromptu dinner party. Sherry, Fried monk fish in smoky bacon (Linda),followed by Bobotie (a Cape /Malay a Dutch East Indies meal from South Africa) and red wine. The wine from John and Linda was so cold we had to warm it up. We finished off with Port and Stilton and freshly ground coffee and chocolate.


Phew! A great meal good company and lots of laughs...

Here I am at the start of 2008, in my office, sleepy kids wander in rubbing their eyes... A new year begins my 6th New Year in a wheelchair.

I never thought I would last this long and every presents much the same problems. I still go through the process, where I reflect on the futility of the before resolving to do 1 more day on the basis that I have much to do yet.

My experience is that one of the most challenging things is to discover who I am and to realise which parts are real.

I am severely disabled but not totally. I will use what I have left as well as I can and hope that my efforts will enrich others and inspire my children.

God Bless You

Christmas Lunch 2007

All my friends, family and readers of this blog.

I wish you all an enjoyable and blessed Christmas.

I sat at the table and waited. When they arrived I could feel the tension. I never found an opportunity to talk. Each had plans that didn't include me.

Before long she returned to fetch them. Walking through the doorway a face like thunder. Venom dripped from the vicious words. Hearts and minds paralysed with confusion and fear I watched their dazed walk.

In the silence that remained I reflected.
Selfishness and self pity
Destructive and mean I thought.

Yes I know it's crazy, 2 posts to the blog in 2 days. It is not often that I might feel proud but my children make me enormously proud and last night was no exception. They were part of a production of "Mulan " being staged by the drama club that they attend on weekends. Having a role in a play is privelage enough, but my daughters each had a significant part. Ruth was a soldier in the emperors army and Carmen played a leading role as Mulan.

They worked hard and Ruth supported her sister throughout the lead up to last night. She is very dedicated and serious about performing. As the lead lady Carmen appeared in virtually every scene, she had loads to remember and sing. There were some real tear jerking solos and some lovely group scenes.

I include some pictures.

I don't know if anyone reads these or whether you are just passing. Writing these was a way for me to come to terms with the massive mistakes I have made and the tragic circumstances of my now one dimensional life. I am changing and some of the change is not good.

I think I under-estimated the size of the challenge and the length of sheer repetitive lonely times. Heck,I am not complaining or bemoaning my situation, I wonder if I can keep it up and sustain the dignity and respect my fragile ego needs to survive.

Some of the changes I have noticed. Impatience, short temper and deep extreme loneliness . They may be considered acceptable and even expected. I consider them dangerous to my well being. Mainly because of the effect on my state of mind and motivation.

I have used the internet to keep in touch with friends and family, it help, but it can't beat a phone call or a big hug. (Anyway as a virtual medium its virtually useless for anything important)

So I was sent a recipe for German cookies by Milada in Germany (see earlier note) and I will try these soon. If you would like to I have included it:

Vanillekipferl

Small Crescent-shaped Rolls with Vanilla

Zutaten/Ingredients:

200 g Mehl/flour

50 g Zucker/sugar

3 Päckchen Vanillezucker oder/packets of vanilla-sugar or

1/2 ausgeschabte Vanilleschote/scraped vanilla pod

80 g geschälte, geriebene Mandeln/skined sharped almonds

150 g Butter/butter

Vanillezucker mit Puderzucker gemischt zum Wälzen/vanilla-sugar mixed with powder sugar to coat with when ready at the end

I take always a double amount of the ingredients!!! That means you should take 400 g flour etc. as well...

But I remain by 3 packets of vanilla-sugar, only. Or 1 scraped vanilla pod, if I have it. Because you have to coat the ready small rolls with vanilla-sugar mixed with powder sugar at the end anyway. Otherwise it would be too much of vanilla, I suppose.

I take also mostly sharped walnuts instead of skined sharped almonds. I like it with walnuts. But you can take any sharped nuts.

- I make the butter warm. You can work better with it, if it is liquid. But it shouldn´t cook, of course.

- I put everything in a bowl and knead it well together.

- the dough should rest for about a quarter of hour in a cold place

- you knead the dough again and make several pieces of it

- you roll out each piece and cut it in small pieces and roll each small piece on the table and form it into

a small crescent-shaped roll, the ends should be shaped

(but they can be round as well, everyone can decide how to do it, of course - anyway, somebody makes

them 3 centimetes large, somebody likes them larger - I make 3-4 cm)

- you put it on the backing tray, you don´t make the tray fatty (you have enough fatt in the dough)

- you prepare all the backing trays before you start to bake!!!

- you make the heater on about 190 °C (I make 180 - it depends, you have to take care!)

- you bake about 10 minutes (you can try, otherwise they are ready when they begin to smell wonderful!)

- you take a deep plate and put in it vanilla-suger mixed with powder sugar

- when the Vanillekipfer are ready, you start to coat them with the mixed sugar

Good chance!

Yours Milada and Alexander