The road to nowhere

The challenges of organisations 'joining dots'.

My main challenge I am experiencing is to have the HSE Disability Services "join the dots" among their departments.  For All of them I am registered as disabled, except for part of the Disability Services... 

But THAT is a story for another day.

This story is about the HSE and the County Council and contractors, not always joining dots...

In February my manual wheelchair was being serviced. The Occupational Therapist (O.T)  was informed that I really needed to have my chair replaced. It was eleven years old.

I am hugely grateful for the expertise of the O.T. and the Rep for how they managed to create a chair for me which would support my body much better, which would allow me to leave the house more easily, to find a chair which would fit in my little house, a chair which can be dismantled for transport and which is both a manual and powered chair. 

No mean feat!

One of the concerns of the O.T. and Rep and many others whom have seen me using the existing ramp to my front door, was the gradient. The ramp was put in ten years ago, and has always been too steep. While I used a mobility scooter, it was just about manageable. Not safe, but manageable. But I was not allowed to go up or down this ramp when the new wheelchair would arrive.

Due to more physical challenges I have not been able to use my mobility scooter since October 2017, and have therefor not left my house independently since that time.

So, I contacted the County Council (I live in a council owned house) to request a new ramp. 

I rang in February, and was asked to write a letter.

I wrote a letter and received an application form in the post, without any accompanying note.

I filled in the application form, which also needed to be signed by my GP.

The O.T. wrote to the council as well.

I came up with a plan which would be the least damaging to my beloved garden. It did mean taking out one of the apple trees. A new ramp could be made around the other apple tree, and have a new wider entrance made.

In March the council engineer came to have a look.

I was away for the puppet travel, and when I came back in April I contacted the council again to get the ball rolling again. Or to get it rolling at all...

In April two council engineers came out and did all the measurements. I sat outside on my rolator to talk about my suggestions. They seem to understand.

When I saw the drawings I cried.

The drawings were designed as if the ramp was for a commercial building. Straight paths, landing squares, railings on both sides. And most upsetting of all was that the ramp was designed straight through the area where my beloved apple tree is.

The whole design made me feel vulnerable. As if it was saying: "look, here lives a person with a disability..."

Thank goodness they listened and redesigned part of the ramp. Then, three quotes were needed for the council to decide who was going to do the job... and if the job would be done at all...

The O.T. is facilitating a chair which would increase my independence but the council could not guarantee that a suitable ramp would be made.

My wheelchair arrived around the middle of June.

It took until the end of August before the go-ahead was given by the council to build the ramp. All along I made clear to the council that if they did not do the job, I would get someone to break through the wall and make the new entrance. Not allowed, but they knew I was serious. I needed to be free to leave my house.

Two weeks ago the job started.

And to my great relief the builder and his main man who did most of the work, respected my garden, and suggested to create a more gentler shaped ramp. 

I was, and am over the moon. It is beautiful. 

First they had to take away part of the old ramp. A noise affair.

And remove a section of the stone wall

Extiment when the 'Concrete' truck came

 

And I could see the beginnings of my new escape route

The following morning was a BIG day.

I had my first (and last for now...) spin out of my house, in my chair, down the ramp, onto the street, and up the ramp again.

What a memorable moment.

After ten months of being confined to my house, unless 'escapes' were aided by friends.

I loved how the Apple Tree was saved and respected. How it creates an arch over my new 'run-way'. The "Yellow-Brick-Road" although not yellow. (yet)

Unfortunately that is where the fun ended.

The road to nowhere 

After two beautiful pillars were build, the workman left on the Friday . 

The builder (boss) was suppose to come back after the weekend, to hang the gates, and to put up the one safety railing.

The work week has come and gone.

No gate.

Instead there is a temporary sheet of plywood attached by a rope to the apple tree. This will keep dogs and unwanted strangers out of my garden. (I feel more secure not have this part open to anyone, as I can't see who might walk around my house.)

It has also left me inside my house/garden, as I can't move this heavy sheet.

My friend Anne suggested to build the sides of the ramp up with rocks (from part of the wall) to stop the soil from the now higher raised bed falling or washing onto the path. She did an amazing job.

singed!

The whole job was done with so much care and attention - suppervised by Póilin Puppet and visiting neighbour cat Pip. My garden is more open, more spacious, the road to freedom will hopefully be completed soon.

I just find it hard to understand when one is So aware of what this new ramps means to me, to freedom it will give me, to then not come and do the finishing touches.

I will give thanks to the builder in the hope that the comes to complete a beautiful and meaningful project, soon. Monday... To "join the dots".

Pip and Póilin

Pimping my wheelchair changed social perception

Adapting: Make (something) suitable for a new use or purpose; modify

(Oxford Dictionary)

The power to change perception

by adding a bit of colour to my wheelchair

page from Into the Light

Adapting mobility aids 

can increase independence 

or make them more fun

Pimping

my wheelchair

changed the social perspective 

from being a dreaded aid

to comments like

'I want one too' 

Further reading and links

• The process that went into pimping my chair
• This project was also featured in the IWA Spokeout Magazine
• Available books, including Into the Light

Interdependence - A story of Trees, Illness and Acceptance

Illness brings a level of dependency which can be very challenging to accept.  But maybe we are all dependent on each other to some degree... 

"These trees in your photo remind me how the trees can teach us in quiet ways the timeless wisdom of waiting, enduring, drawing strength from others (which we often seem to find so difficult to do!) and finding hope for springtime and the future."

Joyce Barrass

'The Oak tree is the emblem of strength and hospitality.' 

Kathleen Madge - The World of Living Green. 

Print from the  Into the Light  series

The following thoughts were the starting point for one of the reflections in Into the Light:

At the edge of Annaghmakerrig Lake a young hawthorn tree had grown leaning against a much older and stronger oak tree. It was as if it needed support to grow. To survive.
It made me think about dependency, about asking for help. Accepting support.

Cheri Register contemplates in her book Living with Chronic Illness: ‘Asking for help is, first off, an admission of helplessness’.

I certainly have struggled with dependency for the duration of this illness. I can still find it difficult to ask for help.
I am resourceful.
Make changes, re-think if it really needs to be done; divide up the task over a longer period...

At times I simply have to ask for help.

No matter how sophisticated the intellectual acceptance of illness is, it stays emotionally difficult to say,  I can no longer live without support.

Susan Alm puts it clearly: 'It is very frustrating when you can’t pick up a spoon or stir a pot of soup. When you have to have someone come in and do the simplest, very basic things for you, it is very difficult thing to deal with. And it is difficult not just because your life is disrupted by having another  person there, but because it's admitting that you can’t take care of yourself.'

So, What does independence really mean?

'Independence', suggest Jenny Morris in her excellent book on disability studies, Pride Against Prejudice, that 'to the non–disabled world the term is used in a specific ideological contexts; it means both physical and emotional autonomy and the focus is on the individual's ability to achieve this autonomy. When you can’t carry out these tasks you become in a sense helpless and subordinate - independence is assumed to be impossible.' Simon Brisenden refines independence further: 'The disabled are victims of this ideology of independence. It teaches us that unless we can do everything for ourselves we cannot take our place in society.'

Now that made me think.

It can be argued that my place in society is that of an artist and writer who conveys a message about living with the challenges of chronic illness/disability, through words and images. In order for me to do this at the best of my ability, I need assistance.

I realize that my dependency is not necessarily one-way. Maybe it's more a case of inter-dependence. I need somebody. Somebody might need me; maybe to earn a living, or to learn from my creative work.

This thought takes the pressure off ‘needs’, and as Cheri Register suggests, 'If we are allowed to retain control, we can accept offers of help without feeling's diminished by our dependence on others'.

Bonnie Klein, who wrote about her stroke puts a practical spin on independence. 'I no longer see independence in terms of how far I can walk, as I did in physio, but as control of my life, measured not by the tasks I can do without help but with the quality of my life with the help that is needed.' 

That, to my mind, is very powerful indeed. 

The focus is on the quality of life, needs be with support. 

To bring this to an even more human level, she suggests, 'Maybe independence is a misleading concept. Each of us is dependent on others. Perhaps independence is not the ultimate goal, but interdependence: the possibility of doing with and for each other, the ability to ask for help with what each needs.'

Or as Sister Stanislaus Kennedy puts it beautifully that all of us have unique gifts. 'We live better when we share in the presence and talents of others…'

Maybe we are both the Oak Tree and the Hawthorn. 

Links:

• This story was the one of the starting points for what came to be my Into the Light book in a box, which consists of a set of images, and short quotes.
• The image is one of the A4 prints available here
• Joyce Barrass who instigated me to write about this image, has her photos here and Blog
• Quotes are from: Kathleen Madge, The World of Living Green 1947, London and Redhill Lutterworth Press  page 16; Cheri Register. Living with chronic illness, page 73, Susan Alm. Quoted by Register Page 36; Jenny Morris, Pride Against Prejudice: Transforming Attitudes to Disability. Women’s Press 1996. page 13 & Morris, quoting Simon Brisenden, page 140; Cherri Register. Living with Chronic Illness, Bantam Books, 1992, Page 59; Bonnie Sherr Klein, Slow Dance A story of Stroke, Love and Disability, PageMills Press Berkeley, 1998, page 220 & 278
  Sister Stanislaus Kennedy, Gardening the Soul – A spiritual daybook through the seasons. Simon & Schuster/Townhouse, 2001, page: 5 June See Also HERE

Miracle, miracle, she can get out of her wheelchair

Yesterday I wrote about the wheelchair in my life. This sparked some interesting conversations, and thoughts on furthering our independence by using a mobility scooter. 

"In a wheelchair or On a scooter..."

The wheelchair:

'stuck' against a tree in Brugge- Belgium'

Acceptance from others living with ME/CFS:
"It was so challenging because I thought I was "giving in" to this disease."

I can fully appreciate this as it is a huge step to accept the need for mobility aids. It can be seen as giving in, but in truth it is a way to maximize our ability, not disability...


Acceptance from a mother's perspective:
"There were so many lows when Anna was ill [with ME] but for me One of the most heartbreaking was the day she asked me if she could get a wheelchair. I remember going into my bedroom and crying my heart out. It felt like the end, it felt like she was telling me that she was never going to get well. I just could not accept it, and I'm the end she did not get one. I still sometimes think of that day and wonder if it would have given her more freedom and whether it would have been the right thing to do..."

Anna turned her life around in the most remarkable way. I will write about her soon. 

The feeling of 'guilt:
"When I have been out and about I feel a mixture of guilt and fear ( If we get stuck on a step I get out of the wheelchair and walk over it - will people think I am a fake or like this character in "Little Britain" !?) 

This brought back a memory of one of my early trips around town in my wheelchair.
Heike, the friend who brought me on that very first trip outside my house, brought me for a walk towards Lismore Cathedral. The path is very rocky. The step up into the graveyard (well worth a visit) was just that little bit too high to mount. I stepped out of my chair and Heike roared:

" MIRACLE, MIRACLE" 

This memory still makes me chuckle! 

Feelings of relief:
"... relief that people finally understand that I am physically ill even if nobody can see this otherwise." 

Yes, indeed. Living with this at times 'invisibile illness' is hard. People judge us by what they see, not by what they know or by what we tell them. 
Using a mobility aid can break that barrier. Walking out of a public house, I can be seen for a drunk (drunk on chamomile tea or orange juice...). Using my walking sticks, my unsteady gait is seen as a result of illness.

Positive responses from other:
"...Great that you've come to flip viewing the chair as a symbol of what you don't have to being your means of getting about and communicating with the world."

The mobility scooter 

On Youghal beach with my scooter. Happy!

To really is that many of us who live with ME/CFS do not have the strength to push our manual wheelchairs, so this still means a level of dependency on others to leave our homes.

A mobility scooter is the way to combat this.

My scooter enables me to go into town on my own, do my shopping. Further afield I do need someone to put it, and me in their car, but as this (Rio 3 lite) portable scooter can be totally dismantled it fits into the back of even the smallest car. The battery lifts out, the seat comes off, the handle folds down. 

I have brought my scooter on trips to Holland, and on holidays in Ireland. It is not suppose to be used on rocky, sandy paths, but it is always worth a try! I have trailed the paths around Dzogchen Beara and the beach in Youghal.

Just be sure to bring your mobile phone in case you get stuck!!

Links, and further reading:

• Although the battery of this small scooter is airline friendly, I was refused to board on Aer Areann flight in 2009. I fought this case in an equality tribunal. If you like to read about this, here is the story 
• more scooter and wheelchair stories and reflections in my books 
• Small Scooter:As for some reason the scooter is much more expensive in Ireland than in the UK I aksed this company to price match in Euro, which they did! They are also available second hand on various sites.