Life on 4 wheels and Christmas 2009.

Christmas 2009

A Festive wreath made by the talented Val

Christmas day- was a quiet peaceful, affair and it was a good day to share with with my friends Christian and Jackie. Christian is newly acquainted with a wheelchair. A successful business man running his IT company he has suffered enormously with business and health adversity. This is a testing time for him. The battle is on all fronts. The toughest test is a lonely one and the only person to do it is within. He is a man of courage but even very courageous have dealt with less and withered away.

I had decided that I would be preparing and servicing duck on Christmas day. This we duly started over a day beforehand. I made a a honey butter and orange basting sauce.We salted and seasoned the duck and stuffed it with a sausage sage and onion stuffing. On the day it was roasted for 2.5 hours. For vegetables we used garden fresh carrots and parsnips with butter and rosemary and thyme flavoured olive oil. Similarly for the potatoes, with the skin and par cooked.For greenery we used brussel sprouts fried in bacon pieces with extra butter and fresh black pepper.

Jackie made a delicious baked cheese cake which was enjoyed by all.

A few days before Christmas it started to snow.

With the help of Debbie and Val, Christmas hampers with home-made preserve from my garden , nuts, fresh baked Ginger Biscuits dipped in black chocolate and a tangerine.

The snow remained till boxing day

I have not been bloging for some time now and I see that there are gaps in the journey of my passage through living with an acquired disability. I will attempt to roll back the shutter and let you into the events which passed me by. I have been busy andwhen my mind wrestles with a problem I find it difficult to sit and write. Today I am less distracted by the many problems which have gripped my free mind. So here I am. This account would be incomplete without pictures which, fortunately, for some events I have.

Let me start with a story about my children my girls to be specific. They have been keen drama students for a few years now at a private drama school. They have consistently performed well and starred in a few productions of the drama group. This last production was "The Wizard of Oz" the script was a mix of the Wiz (which starred Michael Jackson) and the original Wizard of Oz. Ruth had an excellent performance in the role of the strawman or scarecrow.Carmen played two roles, the, sassy, jazzy, southern drawling good witch of the south and a singer from the emerald city.

Ruth and Carmen singing

My Children's school results have been fairly good this year Alex is redoing his A level first year with 2 repeat subjects (PE and Maths) and 2 new subjects (Psychology and Business Studies). This course of action, ie staying at Sharnbrook and keeping in the environment of his existing comfort zone, was not my preferred route. I favoured a new environment without the current ruts. I offered that he attend school here in Wellingborough and I would give him a place to work as well as be on hand to assist. At any rate the decision is made and he is seemingly settling down into a more work oriented routine.

Carmen is in her GCSE's . Much loved by all her she gets glowing reports from most. Her favourite subjects are Photography Drama and English Although a good French speaker she is less enthusiastic it and tends to give give it little attention. Her Maths Science and Sociology get good results but she seems to be less keen on them.

Ruth is also popular with teachers and classmates unliike the quiet and slightly shy Alex, the demur and femine Carmen; Ruth is a chatty and out-going character with a ready smile and something to say. All her results are good especially in the sciences and maths.

It has been over a year since I started on the journey to create a new charity called Open Roads. It has at times been very exhausting and very expensive at several levels. One should never set out on a journey without considering the cost. Then you need to be prepared for the unexpected. This journey was no exception. It proved to test every aspect that one is warned about. The most unfortunate was the loss of a founding member, whom I greatly love and admire. I have since stepped into the role of chairman and whilst I have always been an active member of the team, I was happy to play the role of vice chairman. I pleased with our progress we have offices, we have funding till end of March 2010 and in April we commence with a contract to provide services in the county. So you could describe it as a successful year, I consider it to be a year of exceptional success. To check out our preliminary website go to www.openroads.org.uk

The economy and business in general forced me to consider a new line to my business. I developed OncePrint a part of the LCI Ltd business. I have found a way to combine my love for working with pictures with my IT skill. So I can now offer a consultancy in marketing and market research, a service producing marketing materials like banners and flyers and a photo print service. It has been an exceptionally busy period. Next year I would like to spend more time developing my Antarctic picture collection with gallery exhibitions.

My year has been full of events that would have derailed many a resilient warrior but I remain undeterred. Life is never the way you expect it to be and people are seldom what they promise to be. Hope for the best be thankful for what you get and forgive those who let you down.

Golden Eggs and piano blues

I have been very busy lately with updating my business. I have developed and launched a website and developed all the processes around delivering a product to the customer. What remains is just getting the marketing right. I think the product is so impressive in the "flesh" that it sells itself.

I would like to do more exhibitions and have been enquiring at art galleries to do a show my Antarctic work.

In between all the work I have found time to enjoy myself! I went to a blues evening in Finedon. I was very lucky to get to see a great live band called the Daniel Smith Blues Band. We had a great time listening to fantastic piano blues and drinking some micro-brewery bitter. When the show was hoping over I got to meet the band. See below.

The Daniel Smith Blues Band.

This week passed I prepared the final touches for the stand of my pictures at a Christmas Fayre. The event is more suitable for little stocking filler type gifts or crafts. I need to get my name out and show off the work in a tangible form.

The show went well and I learned a lot about selling pictures. I met some great people and many gave me their contact details for later.

The Castle Theatre is a great venue for live events and shows. This Christmas as there is every year, there is a pantomime. This year it's Mother Goose. I was visited by Mother Goose but I couldn't find a golden egg after "she" had left.

Shelley pictured with Mother Goose helped me with the stand. Thanks Shelley.

Once in a Lifetime.

Thanks to everyone who has helped me with the OncePrint business. I will be adding a gallery section containing photographs from artists and photographers . If you would like to contribute let me know and send me a sample of your work. If selected, I will explain the commission and pricing.

In the meanwhile a sample of my work.

The OncePrint poster

Contemplating a New World (descending onto the frozen sea)

Iceberg Icicles

Purple Sun over a tranquil sea at midnight

Winter sunset over a Sea Starting to Freeze

Do it yourself. Making it yourself.

I like to keep busy and I am. My new assistant, Val, and I were chatting about making boerewors (a South African sausage) .I never could have guessed at Val's industriousness within a week I was sending my recipe and talking about the mincer. Val managed to locate an old cast iron hand mincer (see below). With bags of fresh spices we setup, roasted the coriander, cracked the pepper and cubed the meat. The thing is this. To grind the meat feed the sausage and guide the finished work into a spiral.
Thanks to Val and thanks to John and Linda.

New Ventures, Learning and Living

Describing mundane daily life might appear to be a fruitless boring task. In essence it is. I think if you look hard enough at the mundane you will find it quite interesting. I had the opportunity to observe my daughter.

Ruth now just 13, she has been the baby of the family. 2 weeks ago I had Alex and Ruth to stay and Ruth wanted to earn some money doing chores. I needed stones removed in my garden and it's a terrible job. So I hoped Ruth could help me. She did and did a great job, sticking at it for 5 hours a day! After 3 days she had finished front and back with about 20 buckets !

Baked Potatoes

Sometimes time flies and sometimes it crawls. You know they say the length of 5 minutes depends on which side of the bathroom door you are on. Well I must be in a time warp.

I need your help as it is.. In a few day I publish a website for a new business. All will be revealed. Just watch this space!

The weekend past was the warmest for awhile. I watched the Rugby on Justin TV (web based) and then sat outside by the fire chatting to my son. We had bought some fresh fish (trout) and some burgers and we just slowly prepared the meat before tucking to a sumptuous meal with baked potatoes salads and bread. Delicious!

Lawn Badminton.

Rewind

As I sit here I realise that I am a very fortunate man. Despite my hardships, I am able to be outside in the sunshine, to have a wonderful house and garden and a humble disposition of gratitude. It is being aware of my frailty and acceptance of what is good and bad in my life that I can enjoy what I have.

I have worked hard this past week. Presiding over a crisis in Open Roads. I took control when I realised that I was a neutral party and had to do something to keep the team together. Things in the team are still a little fragile but building a successful team means going through the bad times together and keeping an eye on the ball. We aren't in this for ourselves. We are driven by a need to improve the lives of others living with a major disability.

Since my last post I have had Carmen's birthday, a surprise visit on Father's day, some major changes in Aide de Vie (which have resulted in me leaving) and the Open Roads crisis above. I have been stronger lately as I was recently helped with a replacement manual chair. My powered chair, now unused, is left on charge whilst I await the modifications which will hopefully improve it.

Man Flu

In bed still, after 3 days. Debbie, the Kiwi lady who provides my care and assistance, says it's swine flu; her diagnosis is biased by my grumpy behaviour. I think she means the New Zealand name "bastard flu".

I managed to rig my laptop up but I am so weak that even pushing the buttons is an effort. I will endeavour to work tomorrow but I think today is a rest day. I hope this doesn't go on too long, I'm so bored.

Talking about this do you think that better entertainment could be arranged for ill, disabled people? This will be my next charity cause. I can see it now "belly dancers for disabled ". OK, maybe too sexist.

Ruth's Sleepover

13 yrs old and happy and bouncy. Ruth arrived for a sleepover this weekend. We had a full house. 6 new teenagers and enough sugar to make the worlds largest boiled sweet. Explosive.
Saturday afternoon was filled with sweets and snacks on the trampoline.Then it was pizza followed by a chocolate fondue and movies before retiring to sleep on the trampoline tent. While we hoped it wouldn't rain.

It didn't. They all slept well and continued the party in the morning with a pancake, breakfast and videos .

Thoughts

The thoughts in the mind of a paralysed body are different. The thoughts normally dealing with activities involving movement are replaced with the thoughts about people, events, unfinished tasks and regrets. This is my experience as I lie awake at all the hours of the night.

Now that Open Roads is launched I can let others take care of its' development. My focus needs to shift to outreach, I want to get every disabled person in the county excited and supportive. This is a far bigger challenge!

Today the sun is shining but its cool. Mozart Piano Sonata 11, in the background and tea and scones to look forward to are the ingredients of a good day.

I have children coming over to test a trampoline tent. I will try and get some work done beforehand.

I know I should not be doing this but I wanted to do something that wasn't just sitting around watching TV. In the absence of company this feels like I am not alone.

I have had my parents staying with me for a few weeks and they are really great people to have for company. Friends with everyone that happened to drop in and fitting into my life and plans and whatever I was doing.

I have struggled to work lately and this is largely due to posture which can result in an instant headache. This is difficult to explain and I am sick of comments from people who don't have a clue how constant pain and discomfort can tire one.

The Open Roads launch went OK however there were a few things I would change in hindsight. I managed to do my talk without significant problems. I had to adjust my time due to the time taken by other speakers. I was able to complete the talk without making a noticeable blunder and it went ok. I will put some photos up as soon as I get them from the photographer.

What kind of man are you anyway?

Can you keep going when hope is fading?
Can you hold on to your principles when you are trampled by your friends?
How do you believe in the future?

Depression has really sunk it's suppurating claws into my exposed skin. The poisonous trickle of infection spreads like volcanic lava, burning its' way into my mind. I don't mean to be so low but I am heavy with this burden.

I wake up in the dark and when the light comes I lie there still. Unmoving on the outside but sick and confused my poisoned mind races back and forth.

What kind of man starts a journey but wavers with hardship?

Cold Comfort

There is still snow on the ground. The air may be warming but the shade is not. This lack of urgency to begin to return to "normal " has been a strong sense in the overall temperament of the UK. Reluctant school teachers and needless to say, school children, hope that the days of winter would continue; as the hours edge closer to the half-term school break. The weather induced apathy may be snow induced, but the chilling financial crisis and the deepening gloom of recession forebodingly lurking in the background has a sense of fateful eeriness.

I too watch the slow, inevitable creep toward recession with bewildering unease as I contemplate my personal situation and that of my business and charity. The battle for survival in these harsh times is made even more pronounced by the current stage of the business and charity. The care training business (Aide de Vie) has a wonderful opportunity to capitalise on the trend toward more home-based care work and the ageing population with commensurate age related illnesses. We (Aide de Vie) are motivated to improve care quality by improving training quality. The government, distracted by financial gloom, speaks empty words and seeks only to lower expenditure. They do this through devolving responsibility for care to the end users who don't really appreciate the subtlety of care standards but only know the effects of poor quality care. This will eventually result in a slide of care standards and consequent "dumbing down" of the care industry.

As a person receiving 24hr care I am acutely aware of how my happiness and well-being are affected by the quality and professionalism of the person/s providing the care. The relationship is sensitive to the interaction of the care giver and care receiver This relationship is underpinned by knowledge. Knowledge needs to be gained through experience and training. Unless standards are enforced and monitored, professionalism will not result.

So Aide de Vie must succeed and must grow. It's a battle too big for 1 small startup and it needs a voice or supporter at a higher level in government.

Open Roads, our charity with the aim of "Changing the perception of disability " has an equally difficult task to establish itself in the current environment. Budgets are cut and charity is the first to suffer as we struggle on only on the strength of the active members.

Dancing in the snow

The waves wash over me, thoughts, feelings, regrets
Hope so elusive like the flash of sunlight off a a passing car.
Music is both comfort and tormenting feather
The sun shines bright on the remaining patch of snow
I am caught, trapped, by the body which once lived free
Mind Body and Spirit in a dance to the end.

Still beautiful snow

Snow in February?

Taken over the last 2 days these pictures show my garden and street under a white blanket. The last time I saw snow like this was in the Antarctic!

The road forward.

There are many choices we make in life. Some are good and some are bad. Choices made out of Fear, Obligation or Guilt often lead to results will are not in our best interests. I found I can live with a choice made for the right reason even if it means hardship and pain in the short term. After all physical pain has a beginning and end. Emotional pain can last for a lifetime.

I am in a wheelchair, paralysed below my neck with enough movement to press a button. I choose to go on each day even though the discomfort and pain are unbearable at times and leave me exhausted and on the verge of tears some days. I choose to go on though it is easier to rest and relax. It will not satisfy my soul to idle my time away. I can't do much but I will do what I can.

I am considering some post graduate studies and will be seeing dean of social science on Wednesday to explore possibilities.

If you have been following the fortunes Open Roads our charity. You will know from a a previous post (Christmas tipple) that Open Roads wants to change the perception of disability. We are planning to launch this charity to the community on the 7th April. If you would like to attend please write to info@openroads.org.uk In addition, please let me know if you can suggest a web designer who can help with a new website.

Oh yes take a peak at a view of my home through my Webcam see link on the link list to the right.

Catch up

Snap shot of my back garden from the lounge window. Overlooking the herb bed. In the background a trampoline and bird table. To the right a wooden deck with a BBQ just in the picture.

I am thinking about having a webcam set up to do streaming of video of this view. It will indicate the weather and state of the garden with each season.

I am alone this weekend. I have been doing a research report. I keep losing concentration and idle away the time. Its frustrating. I blame the posture in the chair, it takes so much effort to sit and work that I need to frequently stretch my back by trying to arch my back. When I do I sometimes cough, which shifts my position, and I have to start again. Now, where was I...?

This week I hope to meet with representatives of Northamptonshire University regarding doing post graduate research. I was thinking of doing some research into improving the quality of care and the performance of health and social care assistants. I believe that we could improve care greatly by developing the professionalism and career prospects of this uniquely equipped group of people.

Open Roads charity will be a new force in the world. We aren't going to improve life for people in all areas of and all abilities if we see them as set apart from others and therefore requiring a sympathetic nod as we go on with our day. I don't want sympathy. I don't want charity. I need help occasionally and I want real friendship. I have value to add. I see the world differently and I can help others to do the same. We will be launching the charity on the 7th April 2009 any body able to help with organising the event please contact me.

Irma la Douce

On Friday night I invited some friends for a snack and a very special movie. The 1963 version of "Irma la Douce" starring Shirley MacLlaine and Jack Lemmon. An academy award winner and recipient of many awards, the movie is a heartwarming comedy tale of a fresh idealistic policeman Nestor Pitou, who falls in love with a demure yet very alluring prostitute called Irma. It's a sweet story love, jealousy and life that is sure to make you smile.
Yesterday my 3 children came over and they were very tired so after a light snack and a movie we all went to bed.

At Christmas they took some pictures in B/W for framing. So I thought you may appreciate seeing how they have grown.
Anyway after many interruptions during this writing I have decided to "give in" and go for coffee.

I wasn't planning to write today but I have a few minutes before I need to go out to see a friend for his 50 th. Yes, my friend is 50 and I am only a few years behind. Time may pass us by but we enjoy what life has to offer.

I have regrets ,who doesn't but I realise that I only have the future. One can't get stuck in the "perfect past" because you will lose today. So hard to do and so important to remember as I get older.

Life may not be easy but I'll be dammed if I let it get boring by giving in to laziness.