Life in the "summer sun"

Life in the UK can be fantastic when the sun shines. Except that it is so elusive and keeps hiding behind the clouds. Some days have been good and some pictures out in my back garden .

In Eddie's place (a little patio surrounded by vegetable beds)you can easily pick cabbage carrots, parsnip,tomato, rocket, lettuce, beans, corn, basil and sorrel.

Coming off the deck

The apple tree (behind me, out of the frame) is laden with apples and I hope the corn follows suit.

Valentino watching me work.

View of the back garden with the herbs to the right of the trampoline

For those who have asked about the chair it has been serviced and adjusted and it is better but still not right. I have developed poor posture and I can't work out what the problem is. Thank you all for the kind words and concern.

Desperation

If you are a regular reader you will notice the tone a the shortening of my posts. I have struggled to be in the chair and the constant fight is playing tricks with my focus and concentration. This is very debilitating and I am in a bad mood most of the time. I have so much to do and I keep getting further behind.

I need a replacement for my PA, Linda. It pays well and I need someone ASAP any suggestions?

Feathered friend

I can't write too much today. I am having problems in the chair and I won't last long in this position. Try it for yourself sometime, deliberately sit badly, then imagine your are unable to move. Now see how long you last.

Anyway, enough of the problems, I want you to meet my friend. He is 10 weeks old and just discovering his world. His name is Valentino (after Valentino Rossi). He is hand reared i.e. completely tame and totally unafraid of humans. He should learn to talk but I am a bad teacher because I hardly speak!

Lonely post

Today is the day I write. Regular readers will have noticed the paucity of postings lately. I could explain why, however you will have to forgive my deep level of introspection. My mood plummeted recently as I faced the realisation that I cannot be a good advocate for myself. I will always develop strong arguments to get others represented and justice, but I have an inability to put forward myself ahead of others in situations which are about the work I do. This relies on people knowing me or being similarly inclined. This unlikely circumstance therefore doesn't occur and consequently I will enter a very lonely place where my feeling of separation from others is deepened.

Some nights are long. Lately the nights have become anguished hours of restless discomfort. Peace of mind and a restful sleep are a blessing.


We are busy with the launch of a new business. I developed a presentation which we (Simon and I) are presenting to different potential clients. Our success will depend on the interest we arouse and the level of customer need. To give you an idea of the company image I have placed a copy of our logo and strap line for you. Our key point of differentiation is our commitment to care quality and the care givers professional status. In addition 40% of our board are disabled.
I will need a new assistant as Linda will be talking on new duties with Aide de Vie. Please can someone with computer skills and a good telephone manner apply.

Busy times

It's been a busy week with 2 busy weeks to go. We are promoting the new business, Aide de Vie to care and nursing companies. The response has been good and I think our obvious enthusiasm and our fresh approach are having an influence.

Work on the charity has slowed as we seek to register and establish the foundation. Our first big project will most likely be a symposium. We will use the occasion to create discussion and awareness whilst raising support.

I have the kids here today. Last night we had a small BBQ and watched a video. We had fun and I missed not seeing them for the last 2 weeks.

My son went to a school function. A bunch of them hired a limo for the occasion.

Customer care? Are you joking! ?

The last 2 weeks have been a blur. I have helped my son with his final physics paper. I have had back to back meetings for the new company, Aide de Vie and the charity Open Roads. We held a workshop for 25 people and on Friday this culminated in a barbeque for 25 + at my house. After a "quiet" weekend with the children it was back to work.

My PA, Linda, is in France for 3 weeks and I am sharing my office with 2 fellow directors also in wheelchairs. It is busy but it is a good type of busy.

If there is anyone who is wheelchair bound you may sympathise with with my experiences. My wheelchair is not comfortable and there is not a day where I don't struggle to be in the chair. I have been advised to have a day in bed. I hate being stuck in bed. It is so boring. I always say, "I will sleep when I am dead!" To my mind I haven't got time to waste.

My problems in the wheelchair have been worse in the last few months and I finally resorted to resolving the problem. Once identified you would think the rest is easy. I never bargained for the service I would receive from Balder UK. They came for a consultation 4 weeks ago and I received the quote a week ago after numerous phone calls e-mails. The quote was incomplete and I am still waiting for the correct response. It seems that customer care doesn't concern them.

As if this wasn't bad enough my bed broke on the weekend and I am having a tough time getting it fixed. My normally restless sleep is now twice as bad.

So that is it. I need to go and write another letter to Balder UK.

Feeling Sound

The Scouse tribe from Liverpool have a word to describe when something, someone or a personal state that is good or positive. For example when describing a meal just consumed or a brother's friend, they might use the adjective "sound" to show positivity or approval.

Well, Feeling Sound Musiclab in this example is more literal and is the name of a website for an initiative to expand our skills in listening to and engaging with music. It was developed by musicians and music psychologists and you can take part in an experiment on the site. It's a fun test and quite interesting so if you have time, give it a go.

The emotional ride of life

The kids are here. They arrived last night. A story that hides many hidden emotions lies beyond the the events of their arrival.

Saturday. The e-mails from our client/fellow director begin to arrive I see that they are mostly about a meeting between the new Training company and our first client. The e-mails are also being picked up by Linda (also working from her home) . Pretty soon we decide we will need to discuss this and get together. I phone Colleen about the possibility that Linda could pick up the kids on her way.

I got a definite "no", because of other plans. So Linda duly arrives and we do the work. I do what I can and start dinner for the kids and guests. A simple meal of egg-fried rice and a sausage sauce. Now initially Colleen did indicate she would join the dinner but on arrival and seeing Linda's car, she stayed in the car. She wasted little time dropping the kids and left before the doors had closed.

I live in this world. Distorted by resentment, anger and unforgiveness. The hidden rocks that sink unwary canoes are noticeable by a small rise in the water. The complex navigation of river rapids is made more tricky by the hidden rocks. They will eventually erode with time and the constant flow. Sometimes you have to collide with them to shift them, to roll them away.

I have wrecked many a canoe on the rocks of resentment and still, some will not shift. They are not ready.

Growing Garden

Some pictures for those interested. My garden is 50% there.

Herbs

Strawberries and Raspberries

Beans Garlic and Salad

Rosemary , more salad leaves and potatoe

Potatoe and cabbage

Power, PC and People

If any regular readers missed the update last week, that will be because there wasn't one. There wasn't one because I had no PC for a few hours as the power supply broke down and I had to take it in for a replacement. A scary moment. But its OK now. Phew, a device which holds such a prominent place in your life can make you realise how repetitive your day to day routine has become.

I spend many hours in front of the dual screens I have setup in my office. Since being made redundant (or early retirement) because of my disability, I have tried to keep busy. I will never understand the logic of a company that expects and gets your loyalty and commitment but, when circumstances change there is little return of this. Let me explain, companies are made up of people, policies and rules don't count for much ,unless the people in positions of authority apply them. If you are rewarded in one circumstance a change of authority can see you passed over or even ejected. So you can move from having value to having no value. I did when I was disabled. Not immediately. No, I was given loads of support through people in position to do so. When they changed I realised I was finished, my value was zero and I was shown the back door and never mentioned again.

So now I have a small business and I am helping setup a charity for disabled people to improve their lives and also setting up another business doing training for the people who care for the disabled.

So now to the more important stuff... What about fun? Well my fun is doing things to keep busy, my children and my garden.

Anti-virus elections and life

Its a warm'ish Saturday morning. I sit here listening to some oldies, Diana Ross and the Supremes for the curious amongst you, and feeling a little bit mellow. I will often use my blog to reflect on the week passed. I will keep up this tradition and use the time to update you on my solo existence in this wheelchair.



How about this for interest to those who have a PC. This was featured on The Gadget Show recently. I always struggle with anti-virus software, Norton too slow and cumbersome, AVG OK,and so on. Now there is Yoggie. This isn't software. Its a PC you the size of a USB and it intercepts your internet traffic. In fact it even replaces your PC's IP address with its own! And because its hardware it can't be corrupted!


Do you know anything about Zimbabwe? Although the elections have been in the news, the plight of many is ignored. I have family living there and I made enquiries about getting supplies to them. My dad came across this chap who takes supplies up to various people on a merry mission. I have decided I would like to make a regular donation and to ask people up there to distribute supplies to local needy people. If anyone is interested in doing something give me your e-mail and I will put you in contact with this chap and the charity.


There's some strange behaviour being exhibited by the finches. Dude and Fawkes are making a nest. This would be normal but for the impression we had that they were both male!Dude is obviously male.Fawkes doesn't exhibit some of the typical male markings. If you know anything about Zebra finches, please let me know what to do!

For a little insight into the life of a man with a life checked from the pursuits of career, pleasure and material comfort you will need more insight than I am able to reveal in the musings of this blog. I do try to make it a conversation between you and me, I hope you will see fit to enter into the discussion.

Some images to help you,

My apple tree, with its spring frock of blossoms.













A view of my house from the vegetable garden










My raised vegetable garden.

Soaring with the Eagles?

I am just sitting here listening to the Eagles latest and lost in the mood and thoughts about my day. It may not be the ideal activity to be engaged in on a Friday night at 7 o'clock but tonight I don't want to do anything else. Oh, I had plans but they didn't work out.

I need some help with training. If you know anything about setting up training in a company I need to investigate the management of students and records. I know that software does exist but what works and what is best? If you can offer advice let me know.

I should see the kids this weekend. Which is always good. Ruth's birthday is soon and I bought her a gift she has wanted for some time. More about this later.

Rain again today. There have rain showers over the last 3 days due to a sequence of different fronts. This has been needed, because though it's been a cold April, there has been precious little rain. So my garden is grateful. The vegetables at the moment consist of onion, garlic, broccoli, cabbage, potatoe and parsnips and carrots together. I am not sure if the carrots and parsnips will recover after cats rolled around in the bed. We shall have to wait and see.

Getting Knotted

The weekends are a time to relax. Setting the mind free of the anxiety and strain of the week. It's like undoing a knot and it takes effort and time. I shouldn't get so tangled up in the first place...

It is the middle of April and it is still cold. I need to get seeds ready for planting but this year I haven't been out much and the cold wet weather has been discouraging for garden visits.

We are planning to start a charity. Excessive government meddling has created a lifeless, expensive, bureaucratic monster called "social care". The only people who get something out of it are the unscrupulous, cheats and "fly by nights". In the absence of a better system we feel a difference can be made in the role of care giver. Currently the most import 2 people are the disabled person trying to live their life with all its complications and the person/s assisting in this.

We think that there is an area in a disabled person's life that is not dealt with properly. The provision of professional, dedicated, well trained helpers. We don't want to use the word carer. It is a poor description of the role and disabled people don't want a carer they need an aide. Through Linda's persistence we came to "Aide de Vie" or AV for short.

I will tell you more about this later.

It appears as though Linda has moved off the idea of moving jobs. So some stability has returned.

I am still on the search for a new aide (carer, AV). I interviewed a young local, polish girl, who is qualified on the face of it, but may not pass the job shadow. So I will let you know in a few weeks time.

Regret and forgiveness

Do memories invade your mind at inappropriate times ? Do they make you smile and sometimes dry a tear of emotion? Someone once said "live for today " and yet we fret and flounder over the mistakes in our past. We hold on to anger, resent, hate and failure. It succeeds in doing only one thing, it poisons the present and devours happiness.

My ex always speaks to me of her bad life. Debt,work and children problems fill her conversations with me. I am a captive audience in every sense. Unable to interrupt her flow, I sit and wonder about how pretty she is without the scowl and twisted down mouth. Yet she cannot enjoy the good she has because she can't let go her negativity. When will she realise that there is only today, now, tomorrow doesn't exist and yesterday is gone.

I am not advocating we don't prepare for the future, rather that we don't let worry about it,ruin today.

I hate being in this wheelchair, it forces me to be what I am not. I shy from change from crowds and I become reserved. Why? Why give in? I have to live as best I can and with no voice or movement, I just can't do those things. So I do what I can. I have given presentations, I write a blog, I have a small business and I enjoy 3 beautiful children. I am not dead yet.

Dr Zhivago

I watched Doctor Zhivago yesterday. A 4 hour BBC movie on the novel by the same title by Boris Pasternak. I am currently listening to the audio book which is 16 cds in length. A very moving tale set at the time of the overthrow of Czarist Russia and the move to communism. A few things did stand out for me but the clear portrayal by the author of the importance of love and a belief system were very poignant. The story covers the life of Yuri Zhivago, the women he loved, the political turmoil in Russia and the lives of ordinary people in extraordinary circumstances. Read it if you haven't already done so.

This morning the ground was covered in a blanket of soft, fleecy white snow. Even the motionless trees couldn't shake a covering of white. The clear blue sky and subsequent sunlight ensured that it didn't remain.

The week passed has been typical but marked by the Alex leaving and the return of emptiness. We had a chance to say some things and talk. He is a remarkable boy.

I have been given 3 male zebra finch by Linda after she ended up with too many. They chirp all day at my lounge window, occasionally darting around the cage in agile celebration. Their names are Dude, Easter and Fawkes.

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

OK, I'm back.

I don't know what to tell you. My day to day existence is pretty boring by most accounts. I have learned that I need to do as much as I can to maintain sanity. I need very little to be happy. Company, conversation, stimulating challenge and good wine. It is too hard to be alone on top of the hardships and sheer repetitive existence demanded by this disability.

So the SA Rugby team has maintained some form after the world cup. The match against Wales was scrappy but I never felt concerned and neither did this world champions, SA, make me feel that they were playing their best.

John B and John F came over for beer and videos on Friday night. We watched Mel Gibsons Apocalypto. Don't bother, a waste of 3 hours. About a tribe in the Amazon and the expanding Mayan dynasty that seeks blood sacrifice. Lots of forest, blood, violence and subtitles, 'nuff said.

Tonight my friend John comes over with his son to watch a movie. This should be better, Tell no One" (French) . I have seen it twice.

Once more unto the breach, dear friends, once more,

It's a warm 9 degrees out there. Cold wind and cloud don't help. My day so far has been doing research for something to help Alex. Whilst thinking about Alex, he phoned me last night to tell me that he received an A grade for his math class work. This is a good sign he is beginning to take school seriously.

I see the sun is shining. Well it's still chilly and windy.

This week we went to a trade show in London called Insight. I picked up some new ideas and decided that the word "insight "is over used and we will need to change the company name. We couldn't spend enough time there due to the traffic (over 6 hrs round trip !)

Coffee time, catch you later.

I have not written for a long time. Most will not notice but I feel I should apologise if you have been a regular visitor.

I will briefly update on the last few weeks as I remember the events.

Well as my birthday was a low time ito of my health I don't remember too many details. I had a visit from Linda and my neighbours , John and Linda. My children and Colleen arrived back on the Saturday and came over to wish me a happy birthday. That's about the extent of my recall for the week, thanks to any who phoned or sent messages.

It has been a very cold past few weeks. Autumn was slow to arrive but now makes every effort to to catch up. From my office window I gaze onto the Lime trees, along the garden fence, and watch how the leaves tumble and twist as they release their hold and fall silently to the waiting earth. The ground yellow with a winter blanket.

It is the final day of my antibiotics for a mild infection which just wouldn't shift. I hope this works because I have been struggling with it for weeks. I could do with some South African sun!

What a horrible day so far! Hopefully it will improve.

Started waking up from 2 hrs sleep as I spent the the night trying to cough the last remnant of flu from my lungs. So I listened to the radio and coughed.

New carer, Fundi had her first day solo and it took over 4 hrs. The strain was to be kind and polite whilst feeling like a bear with a sore head.

Thanks to all for the lovely birthday wishes.

So this morning I was doing the physio routine (I ask my carers to give my limbs a stretch every day) and I realised that because of my position at the time I was able to touch my face. I was able to touch the skin with my fingertips. So what you will ask? Well for 5 years I haven't felt skin on my fingertips. They are softer and more sensitive. I could feel the slightest texture change. From the hair on my cheeks to the dry skin on my nose.Wow.


I enjoyed the rugby and seeing SA as world champions. When we won the 1995 RWC I was on business in London so I watched inside a pub near Leicester Square. Who could predict that the next time we would win, I would be in a wheelchair, paralysed below my neck.

I don't know what tomorrow will bring but I still have a carer to train this week so I expect time will be limited.

I have been wanting to regain my enthusiasm and strength to work at the challenges of the life I have now but I have struggled lately. I have to keep myself from descending too far. I believe it will be too tough to get going again.

This past week has been a combination of bad flu work and training new carers. It was a long morning routine with Henry (trainee) doing his first session on his own. It took 3 hrs today and it should get better (hopefully) .

I have a picture here of a great puppy here. Alan has decided to keep a dog. He bought a Patterdale terrier. Take a look at these pictures

SMIFFY

I promised you an update and an update you shall have. I had friends over from Germany and they stayed till yesterday. I had a great time and I think they did too.

Milada visited me at the time of my accident in Germany. She had a house near the hospital in. Linda stayed with her for several weeks whilst visiting me in the hospital each day. She had lost her husband some time before and has a son Alexander, who coincidently looks remarkably similar to my son by the same name.

I picked them up from Stansted Airport and we returned home and my children arrived some time later. Unfortunately my children only stayed one night but in this time they got to know each other and enjoyed the time.

The weekend is over and after the fire incident we have sort of recovered. I bought 4 more fire extinguishers now that I realise how rapidly a fire can take hold and spread. I have also bought a fire blanket as powder extinguishers are short lived. I will keep this in the kitchen with a powder extinguisher.

As someone who has always been a bit sceptical about the need for a fire extinguisher in a domestic setting, I have now completely changed my view. After seeing the rapidity that the fire took I realise that a few more seconds would have been disastrous.

I was going to use this update to tell you all about my weekend with a friend and her son ,out here on a visit from Germany. Unfortunately I have been interrupted so often I just haven't the time.

I'll be back...

Fire Fire FIRE! !

How do I begin?

There I was just finishing my eleven's (cup of coffee and a biscuit) and going through work with Linda when Sharon, who is working behind me, asks "Should that iron be smoking? " Referring to the iron in my bedroom, where Ellie was busy with some ironing. Ellie had left the iron while she popped to her room to do something.

Linda looked up from what we were working on to go and have a look. In the next moment a flame developed. Linda was shouting for Ellie while smoke filled the room and the fire alarm went off. Rushing back to me as Ellie arrived she breathlessly asked "Do you have a fire extinguisher? "

Sitting helplessly in my wheelchair with my hand off the control, I replied with directions to the device which I bought a few months earlier, thinking I would never use it. Extinguisher in hand made her way back to the scene as smell and noise filled the house.

By this stage Ellie had unplugged the offending device which promptly fell to the floor and continued burning. Using the extinguisher Ellie smothered the rebellious spirit of the shamed iron with blue powder.

Picking up the pieces by intact cord, Ellie finished it off outside.

We were left with smoke and noise and a sense that we were saved by quick thinking and 2kg of blue powder.

Damage: Charred Iron
Burnt Floor
depleted fire extinguisher
Smoke smell

The dejected device

On Wednesday John and Linda came over and I hosted them for dinner. The menu:

• Greek Salad
• Roast Chicken with pork, sage,and corn stuffing.
• Roast carrots seasoned with thyme.
• Roast potatoe
• fresh green beans
• Linda brought a Pavlova with mango and syrup and ginger
• All accompanied with good wine

John had his birthday on Thursday and Debbie on Wednesday. So we enjoyed the occasion.

Last night went to John B for dinner and we enjoyed good roast vegetables and a Tuna kedgeree.
What a great meal!

It's getting cold now as Autumn draws in.Even though it's sunny its cold.

I missed the kids this weekend. With Carmen and Ruth performing in Mulan and Alex's football I can't keep in touch with them.

Even though I have been busy, I still find the loneliness and solitude very difficult. My heart carries the pressure and pain of the hurts and dreams and hopes that can't be shared.

Where has all the fun gone?

I couldn't sleep last night I was concerned about an incident of extreme selfishness. I went to watch my son play football. The team he trains with played a match. So we get all geared up. He adores football and will do anything to play. He played well the week before and was expecting to play. I don't get to be with Alex like I used to and wanted to watch him.

The match started with Alex as a substitute from there it just got worse. Everyone else was given a part but the coach didn't want to "break the flow " in the team while they were winning. I was disgusted. The competitiveness and the obvious favouritism broke my heart. Why do parents bring selfish ambition to a schoolboy game and lose the main objective which is to take part?

Alex full of expectation.

I thought it was time to have an update on the garden. I have given a few details about each.

View from deck toward the back. In front flowers along the deck.Herb garden to the left followed by strawberries and herbs.

Poets Place.

Strawberries and herbs.

Herbs.

Cabbages at the back of the garden.

Squash!

Runner Beans right at the back.

I never really finished my post on Monday. I was interrupted by the doorbell. It was my friend John. We had some tea and a long talk. Poor chap is suffering with stress and just needs to talk and I can't do much, so I listen.

I was going to write about the few weeks I spent here with my mother and brother. We had 2-3 weeks together. There was an overlap with my kids, when they spent a few days here. This was a very busy time and we have never all been together for such a long time. The really enjoyed themselves and I felt they bonded well with the family.

So I have never really recovered from the time of frenzy! Now I have to focus every moment on my business future or I just won't recover my momentum.

I feel very afraid. I am not sure I can do this. I need such different characteristics to the diy mentality I currently try to work with.

I have 3 business ideas I am toying with, the current consultancy, a small consumer product, and a business with disabled people to offer business advice, and products for disability living.

Sometimes you start without where you are headed. You don't know what you are doing but it is too late to think about it as you find yourself staring at the computer screen. Sounds like this might be such a time.

The Radio on Friday morning had a piece on a a Journal entry in the latest Lancet. This was about the link between mental health and other medical problems. I wrote about the importance of mental health about 18 months ago, to our research director. No success and I am gratified to see its back.

A busy at emotional few weeks have passed. My updates have stopped and in some way so have I. I will not describe to you all I have been through. It has been a time of happiness and a time of sadness. My heart is heavy. I will tell you some news.

3 weeks ago my mom came from SA for a visit, a week later my brother arrived to help me with a few jobs. They left on Thursday the 30th August and I have an empty house again. We had many things to achieve. My family are an important support for me. Helping me to get things done that I need to achieve but can't find appropriate people. Rodney is an excellent craftsman and electronic engineer. My mom helps me to think through problems and to organise my stuff. Mom also left me with 3 large tins of biscuits and rusks.

So I should be happy. Instead I am sad. My house is empty again. I feel empty.

Summer at last! We have at this late stage of the year begun to have warm days and nights. With England being so strongly influenced by the Gulf Stream (high level wind which drags humid Atlantic air toward us) we have experience the most wide spread floods in hundreds of years. So some warm dry weather is most welcome.

I am grappling with many difficulties accompanying trying to run a successful business, keep a fully functioning home and fit in day to day activities. Sometime ago now I realised 2 things:

• if you want something done properly you have to be involved.
• I can only do one thing at a time.

I have reduced my meals to one a day to save time. Unfortunately meal preparation still requires supervision.

I am not sure how to move from where the business is now to the next level. I need at least 1 further researcher to take on projects. This will require a very careful selection but how do I find candidates?

This week was supposed to be a quiet week. Presentation was postponed from Monday to next week. So instead of a relaxing finish to the project we are busy with infinitesimal changes.

My aunt passed away this week and it was kind of expected. It's still a shock being just a few days after her mom, my gran.

With all the sadness of this week some more bad news from a friend (on Wednesday) was enough to put me into a somber frame of mind. Relationships are complex and difficult to repair. The news that he brought me was despairingly painful. I failed to offer any comforting words felt so useless as a friend.

I watched Blood Diamond that night and was blown away by the sadness and shameful greed in Africa. de Caprio gave a convincing performance and I was very impressed with his portrayal of a Zimbabwean. A great movie but don't watch it alone.

Gordon Brown is so obtuse how can you ever get a straight answer from him? I have heard him interviewed several times over the years and he never answers the question if it's tricky. He sidesteps the issue and deals with some other point.

eg
interviewer: People are concerned about x what are you doing about it?
GB: Well I think this is related to y (and then proceeds to babble on about how they are implementing a program in y)

No doubt he is intelligent but he is an intellectual bully and very unfulfilling to listen to.

I am sat here and I know I have things to write about but my mind is a bit frazzled by my work. The constant news about the floods and even more rain on its way, isn't helping with diversifying my stimulation. This is a difficult place, if I could go for a run that might help. This stage isn't helped by some of the other frustrations that are ever present.

So without giving vent to them here, I will sign off and try to channel my mind toward work!

So here are some pictures of the latest developments.

We start at the top looking down.
Brocolli, Kale and Cabbage just as Dad planted them.

My apple tree.

Runner beans.

The view from the deck toward the top.

In the picture (above) I am enjoying the view of my herb garden and the colourful flower bed which reminds me of my mother who will probably know the name of each shrub.

As I sit here this evening England is experiencing more floods and rain.I look back on a week of struggle and hard work. Went to see my client yesterday and had arranged to have a meeting with the UK business head to deliver some pretty messages. Struggling with posture and voice I tried to deliver a clear message. I can't say it was done well but it's done!

On Monday we went to London for the start of our last 3 groups. Linda stayed over in the hotel where we held the groups. What a posh but friendly place. The groups went well and our work quality is really top of the class!

This morning my mobile had a voicemail and I knew it was bad news. I didn't have the strength to open it by myself but when Linda arrived she heard the beep and helped me. The news was of my granny's passing the night before.

It was like a curtain fell and the dark loneliness of my isolation suddenly was staring me in the eyes. I felt the loss of every motionless nerve fibre that once obeyed my thoughts and responded to my emotion all endured in the 6 years of this wheelchair. The inability to be with the people so much a part of me. I wept and couldn't stop. I'm sorry Gran, sorry I haven't been able to see you in the last few years.

Week passed was so busy.The first 3 nights went on till late followed by an hour to get home. So 3 late nights and a full days work after each. No problem before my accident but now I can't do it without exhausting myself. The groups went well and Linda's exceptional skill at getting people to open up and excellent grasp of the project meant we had some great feedback!

I am pleased with the progress the business is making I feel we could be doing more and I would like to get another researcher to work with us.

The garden is looking so full of life. Flowers are opening all over. The vegetables are also looking great. Every journey I make around the garden reminds me of my father. He has become part of everything here. I find this knowledge to be quite comforting.

This week is set to be very busy and I better start preparing.

Made contact with Cathy recently. Cathy worked with me in Unilever as a product developer and later a marketing manager. So good to be in touch again. Cathy came to me through a network system that I use called LinkedIn (see the link for my profile). Many Unilever people are now members. Another product I use is called Ecademy , I find this delivers a different type of "feel " and is better for making a wide range of contacts.

Weekend over now. I have just dropped off the kids , came back and started to work. I finished a few things and now doing my blog, which I miss dearly.

I don't know if you wonder why I don't just do it when I have a "spare moment "? Well paralysis is cruel enough, in that, you can't do any activity like eating, washing etc. yourself. So writing this blog requires me to stop what I am doing, get setup, and then I can be alone with my thoughts while I use the computer adaptions to allow me type. It's slow. Painfully slow but I do it! Surprisingly this is a very important part of my make-up and strive to be independent.

I don't have a financial fallback. I have earned my keep all my life and I don't see any reason to change this. I have "cut my cloth"accordingly. I have a strict budget and I take pride in being frugal! I see waste as a "sin" against the earth which provides so abundantly. (This is quite an interesting way to look at every aspect of your life. It forces you to think about everything you might throw away. I say things like,"the plant worked hard to make that think before you throw it away! ")

I wanted to update my poetry blog with the strong emotions I have been having so I will sign off and have a go.

Anyone living in England, in the last few weeks, will be aware of the relentless rain. Many people have been rudely displaced from their homes. Pushed aside by the risking flood,invading their lives. As they rebuild their homes let us spare them a thought instead of complaining about Wimbledon delays or more overcast days!

I sit at my desk today, listening to music and contemplating the day ahead. Went over for dinner to my friend and colleague, Linda and she prepared a fantastic tuna steak dinner. We got to talking about the project we are busy doing. I think we will both breathe easier when it's over.

Today I have all the kids for the night I look forward to seeing them.

So back to the week passed. A busy week. Alex had a maths exam on the Wednesday and Physics and Biology on the Monday. I revised the sciences and his mother (a Maths Teacher) did maths. I believe the Monday Science exams went ok but maths had a few bits he wasn't sure of. I hope that the results are good!

Carmen was given honoured at a recent netball gathering in Sharnbrook. She received an award for The Best Player of the Year, The Most Sporting Player of the Year and a personal medal for a tournament her team won earlier. As Captain of the team, other parents were full of praise for her positive effect on their daughter. This from a player who was "not good enough" according to one of her coaches.