About trying to live with ms and discovering that suddenly most places are inaccessible and that life as a handicapped person is very different.
Wednesday, May 27, 2009
Slept late again it is now 12.23 and is only now slowly getting going; we slept until 11 again which was good.
Not too much street noise apart from a couple containers being placed, funny thing is this year the development down the road is finally finished.
Felt like living on a building site, every morning all the blokes met up across from our bedroom and shared a cup of coffee and loud conversation.
Very social and nice for them but not at 6 am in very loud voices outside everyone's bedroom windows.
After the workers had coffee they picked up their power tools and started work.
All the time waste containers were being delivered by Lorries and would be tossed off with a huge thump.
The daily chorus would start in earnest then; it was murder when they were doing the foundations and later on mass drilling.
Luckily that has stopped but now there is the odd house plus the latest redevelopment right next to our building.
They are extensively renovating and redeveloping the bottom of the house, which means some bits are being taken back to the foundations.
Hope they are done soon as it could get quite noisy and dusty out the back, still in August all building sites close for the month and it’s peaceful.
Most cars on the street are gone too as there is a mass exodus of people going on holiday and life round here is very pleasant indeed.
Always daydream about digging the road up and planting the street with flowers and fruit and veg.
It is a lovely fantasy can just see this oasis of plants and fruit trees.
Now can only hear some heavy machinery next door, Richie tells me it is sand they are lifting in to the back of the house.
Writing yesterday about Marianne and Karin being volunteers made me remember a visit I had from my first prospective volunteer, a strange woman that came to see me one day.
Our last front room Richie had to paint while very ill with flu; I was even worse and had to stay in bed.
Really not the sort of activity for a sick person but the room had to be done as it was only a few weeks to my 50 birthday.
So Richie painted it all blue and bought a few Indian posters of Hindu Gods, which are very bright posters.
These were stuck up and with some mirrors and little glass candles holders dangling from the ceiling it became quite a dreamy room especially as Richie had painted clouds on the ceiling.
So this volunteer came round, she seemed a strange woman who seemed to view all around her with haughty disdain.
After a minute she told me that she could see that I was a very spiritual person.
I was astonished and denied this but she persisted and eventually said but I can see it in your room.
This puzzled me alot, she then said I can see it in your room pointing at the Indian posters.
Smiling I told her we hung them for their bright colour, no, no she insisted you are spiritual I know I can feel it.
Again I said really I am not these are here for the colour but she would not hear of it insisting that having the posters was proof that I was spiritual.
I had after all gone to India to get them she said, at which point I laughed and said that I had never been to India in my life.
She asked me where I had got the poster from if not India whereupon I laughed again saying on the Dapper Markt (market) here in Amsterdam.
This was not a popular answer with the lady, who was indeed a lady visiting the deserving poor.
She then declared me to be spiritual despite this and said she sensed it, and she knew what she was talking about.
Then she said that I was not to worry she would be able to release the spirituality within me, and she would gladly be able to do this for me.
I declined her offer.
Luckily my carer came round then and I introduced them, my carer the lovely Marjan asked
the volunteer what she knew about MS.
She responded by saying she knew all about MS and knew everyone died of it.
At this point I asked her to desist from this discussion right then and there and asked her politely to leave the room as I needed to use the toilet chair in the front room.
She remained sitting seeming not to understand me so I asked again and another twice finally I lost it and yelled please go into the kitchen.
But why she asked?
I roared because I need to use the toilet chair here and do not show my naked arse on the first date.
She left for the kitchen.
After I finished peeing I went into the kitchen to apologise for shouting and the good lady says ‘but why did I have to go to the kitchen?
At which point I had had it and asked her to leave.
She did so.
Later she called me just as I was about to apologise again she said ‘you know I still don’t understand why I had to go into the kitchen’
That is when I said I don’t think we are a match and would you believe it she started arguing that she would be good for me.
I repeated calmly that I did not feel we had hit it off, we were not a match.
Finally could only hang up as she kept arguing that her and me would really get on you wait and see ‘I know we will get on fine’
Felt a brute for cutting her off like that but had to look after myself.
Still look at one of the posters on the bedroom door and think about being seen as spiritual.
More philosophical than spiritual and often more political and even more often more social.
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11 comments:
She sure was a odd person. I think sometimes people think they are 'spiritual' and want to force it on others.
You know whether someone will be good for you .. she wasn't.
Die from ms .. not everyone .. what a thing to say.
A volunteer should be about hope. Always ...
And not leaving the room for you .. what was that about .. maybe a bit of brain damage somewhere along the way
I hope today is a good one for you
Hi JC,
She certainly was a strange woman, she obviously felt she was a cut above me.
Did not put me off meeting other volunteers.
Today the weather has been good getting changeable could be rain.
Feel good myself hope you do too.
Love,
Herrad
Hi Herrad! I bet you meet all sorts of people through volunteers huh? What a weirdo, insisting you're spiritual like that! I'll bet she insisted so much to stick around because she wanted to convert you! I'm glad you had a sense of humour about it, but I probably wouldn't have been so nice! That was a horrible thing for her to say as well.
"Spiritual" is so abused- I am a materialist in belief but put more value in "spiritual wealth" than in material wealth. I do not see this as having a superstitious elemenet only as being alert to my humanity and the wonder which surrounds us.
Do you think the good lady ever put the truth before her material comfort? It is funny how so many "spiritual" people value the material much more than us materialists do. You have a great free spirit that has never been tamed- and never can be!
ps. Evidence shows all MS patients die- as does every one else!
Herrad - I enjoy reading your posts every day. This woman sounds like every visit would have been a frustrating experience. She completely had her own perspective and version of your truth, despite your attempts to clarify. Oy. No one needs that!
I've long been interested in Buddhism, not as a religion(which some say it is & some say not), but as a calmer, more in the moment way of life, and although I am an Atheist, this has often seemed to "verify" to some people with a religious bent that I am searching for God or Heaven. No, actually, mostly just looking for a way to handle Me better on earth.
Your lady doesn't sound so much like a well-meaning person of spirituality. She sounds like a blazing nut.
Her wanting to sit there while you used the toilet chair makes me wonder if she follows people into bathroom stalls as well. ~Mary
It's funny, Richie says he's a materialist and Lakshmi is the Hindu goddess of wealth, prosperity, and generosity. Serendipity? Or did he know that when he selected the poster? In any case, it is pretty.
That potential caregiver would have been a control freak. I'm glad you listened to your gut.
I can not believe that lady... First off I can't believe she made the comment that everybody with MS died from it. Also I can not believe she did not get the point that you would want privacy to go to the bathroom. Good for you for getting rid of her. And you should not feel like you have to apologize to anyone like that. I could go on and on. But I am proud of you!!!
Hi Rain,
She seemed oblivious to others.
Hi Richie,
Thanks for putting her statement into context.
Hi Cranky,
I did start to feel like I was getting a visit from a do gooder.
Hi Mary,
Hadn't thought of bathroom stalls, she certainly seemed odd enough.
Hi Webster,
He knew who Lakshmi was, I brought a painted plaster of paris figurine back from Trinidad that I found in San Fernando in a lovely Indian shop.
Hi Tara,
She did not seem to have any notion of sensitivity whatsoever.
The person that had organised our meeting was mortified and apologised profusely.
She was relieved that I did not blame her and wanted to try again.
Love,
Herrad
Well we Indians are very spiritual people in our own diverse ways and seeing that poster in your room also would have given me the impression that you were interested in Hinduism.
But that lady was 100% weird. Not sensitive to the needs and feelings of others and quite a twit. I wouldn 't want her around me at all. I 'd get very irritated.
Hi Amrita,
Thanks for your comment, irritated is how I felt after a very short time.
Hope you are having a good day.
Love,
Herrad
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