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An Ode to India – travelling with disability

For me the decision to travel to somewhere new is usually immediate and always filled with excited anticipation – sometimes perhaps with a hint of nervous anticipation. For me the world is large with so many places to visit and so many experiences to have but the world is also small. Nowhere is any more than a few days travel time away. If the world is so small, why not see as much of it as I possibly can in the 80+ years I will spend on this planet?

Everyone is different etc etc, but seriously I don’t get those people who are happy to stay put and never do anything that is out of their immediate knowledge and comfort zone. Seriously, that would be ridiculously boring. I’m guessing, especially if you are a regular reader of my blog, that you feel somewhat similarly.

Now I get that circumstance, personal or financial, can sometimes make having great adventures more difficult or impossible. Having been in the personal circumstance where any form of travel was physically impossible – I get it. I also get just how frustrated I was. I may not have had the ability to do much more than sit on the couch but I still watched travel documentaries – do it via somebody else if that is all I could do.

For me it was obvious that when I moved to India, many (although by no means all) of my friends would excitedly think, ‘Whoooo, whoooo, just the excuse I need! I’m off to India!’,  expecting my friends just to inform me they were coming rather than even waiting for an invitation or permission! Now Colin visited me in October although only for one night – he was here for work. While amazing to see him, I don’t think that is what I had in mind.

The first friend to visit me however was unexpected – well kind of! She has got a just go for it attitude so perhaps I shouldn’t have been surprised when she informed me she was coming on a visit. Her visit however could never have been a spur of the moment decision for her and for purely personal reasons. There was no way she could have just booked her ticket and then thought about the trip later. I can do that, my friend Sarah who I mentioned in a previous blog can do it – but not Gillian! Her decision required bravery and determination.

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Why? Gillian has Cerebral Palsy and this brings its own challenges – walking, balance and fatigue to name just a few. This blog however is not an ode to Gillian – although her bravery and determination indeed justifies an ode to her! This blog is an ode to India.

India can be so unutterly frustrating! It can bring the very worst out in you. You get so frustrated at short-term thinking, false promises and under-achieving, never mind the ‘it’s not my fault’ lack of responsibility taking. Seriously, why I haven’t been jailed for killing somebody in the year we have been here sometimes astounds me!

India however has done itself extremely proud! It can hold its head up as being one of the best countries in the world. Gillian is from the UK, has a German mum and has travelled around Europe and Australia. Without doubt, she says, India treated her better overall than anywhere else she has ever been. Now she’s not referring to the great access everywhere and the smooth pavements – well now she couldn’t really could she, given they don’t exist. She is talking about the people.

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Datta, our driver, is ready and waiting when Gillian arrived

From arrival to leaving she was met by extreme care from friends and strangers. Nobody but nobody on the streets or in shops / restaurants made her feel uncomfortable or made her life more difficult. On arrival in Mumbai, my driver anxiously helped the very, very tired and stiff Gillian into the car in Mumbai. He then spent too weeks worrying that he had touched her because knowing she prefers to do things herself, I had silently indicated to him to give her space. While Gillian will just remember this (if indeed she can) as somebody seeing somebody struggle and doing what they can to help.

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Maggie making Gillian a yummy traditional South Indian breakfast!

My maid, Maggie, the first morning after she arrived went out of her way to tell Gillian that anything she needed at all to let her know and then made her a gorgeous breakfast.

We went to lunch in Ram Krishna restaurant in Camp, the waiter without saying anything or making any form of fuss pulled the booth table out as far as it would go so that Gillian could walk to the seat and not have to slide around. Now Gillian is more than capable of sliding around but that instinctive / spontaneous act was heart-warming.

She wanted to try a pair of trousers on. When she got into the changing room there was no stool but within micro-seconds one arrived – not a word was said, it was just left in the room. Again no fuss. Just a recognition that there was something they could do to make her life easier so why not!

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Rashid sitting as he explains about a temple so Gillian could also sit

When we did a walking tour of old Pune (Chalo Heritage Walks – my lost blog was about this tour), Rashid Ali, the tour leader, couldn’t have been kinder. He constantly found places for her to sit and rest, when she had to take her shoes off to go into a temple, he got down on his hands and knees to put them back on.

There was a really high step into the temple and initially Gillian struggled to get up it. Seeing her struggle, a lady ran across the temple and offered to help her.

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This was the lady who stopped Deborah so Gillian could get by

Later in this same temple, my friend – Deborah (the photographer from my last blog) said that as she was leaving the temple an old lady stopped her so that Gillian could get by. Again, not really necessary but very sweet.

A few days later with Rashid, we went out to Bhigwan Dam which is a nature sanctuary – amazing, if you live in Pune you need to do this. This required the use of a fishing boat. The boatman without saying anything moved his boat so there was an easier spot for Gillian to climb in. When we were required to get off the boat and walk to where we could spot some flamingoes, the boatman first scouted the flamingoes – just to be sure that Gillian wouldn’t walk all the way and not see anything.

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Our very kind boatman

On return, he moved the boat a little further so that she would have to walk less. Rashid jumped into the mud and got himself filthy so that Gillian could climb off the boat a little easier. When her stick made a small section of the boat dirty where she would have to put her hands, Rashid used his own hands to clean the area – again with little thought just spontaneous action.

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Rashid cleaning mud off the boat so Gillian wouldn’t get dirty

We saw the flamingoes but they were just too far away for my camera to take a good shot and Gillian was struggling to see through binoculars – this requires balance and good use of both hands! Rashid initially tried to help her hold them but on spotting a man with a huge lens on his camera, I asked him if he would take a photo to show Gillian – he did it with enthusiasm and a great smile!

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Big lens! This enabled Gillian to see the flamingoes a little closer up

In Goa, we walked to a restaurant along the road but we wanted to go back along the beach. To get to the beach however we had to go down some steep steps without a handrail. Gillian got a little scared but the waiter ran over and gently took her arm and led her down the steps. Again no big deal, it was just what you do!

I could list and list and list all day and all night the amazing individual things Indians did to help make Gillian’s trip a success but perhaps it is best summarised by Gillian’s own insight. She compared her experience her to her experience in Australia. In both situations she felt she got the same treatment but the difference was the motivation. In India, she genuinely felt it was instinctive when people stepped up to help her. In Australia, she felt it was because people were motivated by the understanding that you should help people – there was little instinct behind it. In India, she felt Indians didn’t feel like she was any trouble while in Australia she felt people thought she was making trouble for them.

The thing that had worried me most about Gillian’s visit and therefore was the greatest surprise was staring. I had warned her and warned her that she would be stared at and photographed – perhaps even more than I am on a regular basis. It is far from unusual for me to suddenly have blank strangers around me and somebody else taking a photo, sometimes with permission but often without. Gillian is used to being stared at in the UK but I was worried that here it would be too much even for her.

I was particularly worried about visiting the Gateway of India in Mumbai. I had been there only a few weeks early with my friend and it was the most intimidated I have ever felt in India. We were simply sat down and then suddenly there were 20 plus men taking pictures of us and they simply wouldn’t go away. We had to get up and walk away ourselves. Wherever we were around the Gateway people stared and stared at us. This was on a Tuesday, we were going on a Sunday when it was busier – I was worried!

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Gillian in front of the Taj Mahal Palace Hotel. Picture taken at the Gateway of India – nobody is staring! Seriously, nobody!

So before going to the Gateway, I warned her again. I really wanted her to be prepared for it – she even suggested that we didn’t go. I wanted her to see it however so we went. I couldn’t believe it, not a single obvious stare and not a single photograph!!! Indeed, that can be said for the whole trip. Her whole trip in India there was no staring or photographs! Honestly, I was stared at less over the two weeks that she was here than I have ever been. Clearly, I need to get my stick back out – it appears to make you invisible!

I lie, there was one occasion where she was stared at and stared at so badly that she felt so bad that she left. I live in a very expensive apartment block (society). The people who live her are 50% expats, 25% NRIs (so people whose parents were born in India but they weren’t) and 25% very well off Indians. People in this society as a whole are well off, highly educated and highly travelled. Yet, it was these very people who stared so hard that Gillian didn’t want to hang around in our garden anymore! I was thoroughly disgusted.

In my ignorance, I expected the poorer, less educated elements of Indian society to be the starers – well they surely haven’t received the same education about disability or perhaps even the same exposure, have they? The people who stared shouldn’t feel proud and these people shouldn’t hold their heads high – in contrast, they should hang their heads in shame. For they were the only people in two weeks who didn’t do everything they could to make India proud of them.

Gillian’s experience of travelling with a disability in India was just an isolated experience, perhaps she was lucky or perhaps that is just the way Indians are. Somebody did tell me that Indians would look at Gillian with lots of respect because despite her disability she was still here! I have no idea if you are disable or your child is and you travel to India will you have such a hugely positive experience but if you are thinking about it, I would say from my experience with Gillian – go for it! India is not an easy place to travel never mind if you are travelling with a disability but I genuinely feel that you don’t need to fear how people will react to you being here.

India is definitely somewhere to book with excited anticipation (but just a little bit of nervous anticipation!).

Finally, India thank you. Thank you for being a major part of my friend’s holiday of a lifetime. Thank you for consistently showing her what an amazing country and an amazing people you are. Thank you.

I Don’t Think I’m Ready But Perhaps I Should Anyhow

This blog was first written about 18 months ago. I was too embarrassed to post it – too embarrassed to admit I wasn’t strong enough to cope. Since then, I regularly come across it, read it and instead of thinking why was I such an idiot about the whole thing? Why was I too embarrassed to post it? I continue to feel embarrassed – its ridiculous! 

So I have decided to be brave and post this blog. It is well out of date but I don’t think it matters. Perhaps somebody who is having a similar psychological fight as I had will read it and feel that they are not alone. Maybe they will see the ridiculousness in not talking about it and actually speak to somebody! 

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I’m doing something that only one person vaguely knows about – at least they are slightly aware of its existence but they don’t actually know I have started to use it. Not even my husband knows about its existence, never mind the fact that I actually have started to use it. This goes against everything that I have tried to maintain since I first got ill. Since I first got ill, I have always said that being open about what was going on, in particular with my husband, was absolutely key. Not being open might lead to distrust and misunderstandings. I have always argued that it was wrong to do anything that might encourage that feeling.

So what am I doing that is so awful I can’t even tell my husband? What is it that I am feeling so unsure of, perhaps even so stupid for doing it that I can’t tell my husband? I do not understand what makes me feel so embarrassed, I do not understand why I don’t want to share what I am doing with anyone. So what am I doing?

While we were on holidays and I had a relapse, one day we walked back from the restaurant and I clung to my husband’s arm, desperate for his support and to help me balance. It dawned on me that day that if I could find something that would help me maintain my energy levels and support me when I was having a bad day, then that surely would be a good thing.

So what have I invested in? I have invested in a walking stick.

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And look just how fun it is! And its my favourite colour!

The fact that it took me three paragraphs to get to the point says it all. I am not sure I am ready to use a walking stick, walking sticks are for old people or invalids – I am not old and I do not feel like an invalid therefore surely that means I do not need one. I am embarrassed at the thought of using it and I am embarrassed at the thought of being seen with it. Does using one mean I have given in – once again – to this illness?

You could, very rightly, argue that if I am using it to walk further on a bad day then it is assisting me in doing more than I should. If I could exercise myself better then yes, using it on a bad day would surely little by little assist me in improving my health. I cannot however exercise myself better so surely anything that enables me to do more is just increasing the intensity of my exercise? I think I am just looking for excuses as to why I shouldn’t use it, rather than looking for justifiable reasons why I should.

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True for so much of my illness, definitely not true in this case. Being too embarrassed to discuss my need for a walking stick preventing me using it. This was not me being strong but me being a coward. 

It has only been used twice, having owned it for more than a week I bought a folding one so I could have it in my bag to use should I be out and suddenly get an unexpected collapse of energy. I have   carried it around for a week every time I went out to use in just those circumstances. On Saturday when we walked across a field to get to a nuclear bunker (don’t ask), I was finding the surface hard going and thought just how much my walking stick might help me. There it was just waiting for me in my bag on my back. We were with friends however and I was embarrassed. Embarrassed because my husband had no idea I had it and embarrassed because then my friends might look at me as sick girl. I seriously overdid it on Saturday and as a consequence paid the price on Sunday.

20140318-080008.jpgIf I had used my walking stick for the entire duration of our outing, would I have overdone it so much? Would it have enabled me to use less energy by providing me with support, balance and indeed a method of propulsion. Perhaps, but I was too scared and embarrassed to try it.

This got me thinking. If I was able to reduce my energy requirements on an everyday basis by use of my walking stick, would this enable me to live more of a life? Walk further, do more? Would this be a good thing? Would this just encourage me to do more than I should? However, if I am using the same amount of energy but using it to do more surely that is a good thing? Again am I just looking for reasons to justify not using it and looking for reasons to prove my justification is ever so wrong. Perhaps the latter but I really do not know.

On Monday, still not quite having recovered from my overdoing it on Saturday, I went for a walk. A walk that included my walking stick. I deliberately kept to the back roads embarrassed by my stick. Ashamed to be seen out with it. At least this was my initial feeling. My walk to my usual churchyard seat took no longer than 6 minutes.  By the time I arrived, I was beginning to get the feeling that it was helping me. I should have been more tired by the walk given my energy levels. My legs should have begun to feel more pain but they were no worse than when I left. Was this the benefit of the walking stick or was it simply that I had under-estimated my energy levels and over-estimated my pain levels?

On my return, I walked back a different route, a route that touched the sides of busy roads, a road where there were pedestrians: people to see me and possibly make comments and wonder why a girl in her mid 30s was using a walking stick. I was very aware of everyone who passed, straining to hear them comment amongst themselves about me. Perhaps I was lucky or perhaps people just didn’t notice or care but I did not hear what I strained for. Silence.

Today Tuesday, the next day, I have tried again. This time walking further than yesterday. Again I didn’t struggle or feel my energy diminishing too quickly. This time I was aware as I crossed rocky ground that it was given me support and helping me balance. With my walking stick it was easier than it would have been without!

20140429-094815.jpgI am still a walking stick virgin however. I still hold it wrong at times and have to adjust it. I dropped it crossing the road until I remember to twist its string around my wrist so it wouldn’t fall. At times I don’t quite get the propulsion right and it lands on the ground at an odd angle. I haven’t learnt how to balance it when I sit down. I also haven’t learnt how to accept that it might be useful to me.

 

How can a walking stick be useful to a girl in her mid 30s who can walk for just over a mile (with a break half way)? How can a walking stick be useful to a girl in her mid 30s who doesn’t walk with a limp or need to balance against things? That is unless I am having a bad day.

For me using a walking stick is still a big experiment. Will I continue to use it? I don’t know – I hope I will if it consistently helps me. Will I tell my husband? I guess I have to. What will he think? I don’t know but I know he will at least wear a mask of support. I think he will think that if I am finding it useful then it is a great thing to do. I wonder whether he will find it embarrassing to be seen with me? Could I blame him if he didn’t? Hardly, I am not exactly embarrassment free at all of this, now am I?

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Gillian above (with her own walking stick) – my inspiration while I was sick and a never-ending source of support. She would have given me a right telling off if she had known I had a stick and wasn’t using it!

My friend, Gillian, was the first and only person I have ever discussed using a walking stick with. She uses one herself and even offered to lend me one of hers to try it out. I was embarrassed by the conversation – I think perhaps by the very need to have it in the first place. She was supportive and encouraging. She too was young and understood what it felt like to start to use one – she had started to use hers at 18! Her encouragement enabled me to at least buy one. I would like to think that one day I will be as brave as her and see only the positive reasons for using a walking stick. The negative reasons are surely just a matter of perception.

So I did eventually tell my husband who completely unsurprisingly was utterly supportive of me! 

I didn’t use it all the time but I always had it on me ready to pull out when things got difficult and I used it all day on a bad day. A walking stick categorically helped me! A month or so after I started to use it, I was re-diagnosed and given treatment that enabled me to make rapid improvement – very quickly after this the walking stick was no longer required. 

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In hindsight, I can only wonder why I made such a big deal about using one! Nobody looked at me funny, nobody laughed and in truth I don’t think any strangers actually cared. I should have used the inspiration of Gillian more – she is a girl who just gets on with things and doesn’t allow fear or worry stop her. Perhaps although I am now living in India and while not healthy, a lot healthier, this blog should act as a reminder that sometimes to be strong you need to accept your weaknesses and not let them hold you back.

Dahi Handi – the Yoghurt Pot Festival

It would be fair to describe my last blog as depressing.

I had found myself in what was quite a scary position. I fully understood why I was feeling so bad and I also fully understood just how bad things could get if not only was I lucky but more importantly very, very careful.

It seems I had been determined to forget about the fact that my health had been so bad and to allow myself to heal from the pain and fear that caused. On the other hand, the process of forgetting just resulted in my returning to where I had been 18 months earlier. I think therefore that it is not wise to forget just yet.

I must remain careful without going over the top. Every day / week I must plan my time so that serious and genuine rest is also included. Pacing: the very word I had allowed myself to forget but at least for the foreseeable future must remain a key word in my daily life.

Over the last few weeks, I have spent considerably more time at home but this has enabled me to do some pretty amazing things with the energy saved. It has allowed me to experience India!

The period from September to November is pretty much festival time in India! Over the next few months, I will post blogs about these festivities. Each however definitely deserves its own blog.

syama-krishna_sThe month started off with the birth of Krishna and the following night Dahi Handi. Indian’s love to party and what’s more they love to party with no concerns at all for health and safety. Consequently, Dahi Handi was an incredible experience.

You see Krishna wasn’t necessarily the best behaved boy in the world and he just loved, loved, loved his mother’s Dahi – yoghurt. a3-2So much so that he would at any opportunity steal it off his mum. Well now, his mum was having none of that – no, no she wasn’t. So she did what every parent has done in their lifetime – she hung the yoghurt pot (the handi) up out of her son’s reach. Well now, as every parent also knows: children grow. So week after week, she had to hang it higher and higher and higher! But Krishna was clever and he always found a way to eventually get to the yoghurt and get it out.

IMG_0035This story has led to the incredible spectacle of Dahi Handi. Big pots of honey and yoghurt are hung either from tall cranes or from a rope strung from two very tall buildings. Now, Dahi Handi has been somewhat restricted this year due to the drought Maharashtra is currently experiencing so apparently what I saw was far, far tamer than normal!

IMG_0006Having met up with some friends, we were all ready for our experience of a traditional Hindu religious festival. What we weren’t prepared for was the Bollywood dance music mixed with a rave! 1000s of men all effectively had a massive rave for two hours prior to the commencement of the Dahi Handi – timing of which was somewhat vague.

Of course, myself and Chris being the only white people there made us the centre of attention at times but we have become accustomed to being stopped and photographed repeatedly! Our friends, who are of Indian origin but still clearly look foreign were not short of stares and people whispering about them. It is never aggressive though – just intrigued!

Only in India however could a fight break out in the middle of this otherwise very congenial rave; the police wade in and sort it out; and then immediately be followed by a car driving through said throng so that a Bollywood actress could climb out and walk through the rest of the crowd to the stage. My friend’s husband was very pleased as she was his second favourite Bollywood actress!

Finally, Dahi Handi could commence – the actresses had arrived even if she was very late!

A team of men (age 12 – 30 perhaps) formed a human pyramid of about 8 layers. A tiny kid climbed up the pyramid onto the shoulders of the person at the top – the kid then proceeded to try and break open the handi unfortunately he failed so had to climb down again to get something better to break it with! Finally, he succeeded and the pyramid was doused in gallons of yoghurt much to the crowds delight!

Dahi Handi Pyramid – my video!

Dahi Handi – professional video

11947918_10153021637676820_7850001245742241422_oNormally, teams of pyramid builders compete to get the pot with prizes worth huge amounts of money. To make it more difficult, water is sprayed on the contestants so that everything and everyone gets very slippery! With the drought however this particular feature was banned and consequently some communities choose not to have teams competing!

Of course all of this happened on a public street. Eventually one side of the road was closed but crowds spilled onto the other lanes which were still open and now had traffic going in both directions. Chaos reigned! Young boys still ran around the traffic seemingly oblivious to the dangers! We did venture into the crowd at several points but were very grateful to the wise planning of our friends who had booked a table on a hotel balcony overlooking the spectacle.

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It was a very long and very exhausting evening but so, so much fun! We seem to spend so much of our lives socialising where the expats or wealthy Indians go – it is always a relief in a way to spend time frankly with normal people from all classes and walks of life!

Next year we will try and get out to a more rural occasion for Dahi Handi which apparently is a totally different experience! So, give it 12 months and you can look forward to reading that blog too!

Damn You, Kazza!

Wineglass Bay is considered to be the most beautiful bay  / beach in the world so visiting it during our stay in Tasmania was an absolute must.

IMG_4645 My first blog post from Australia was entitled: Not a Kazza in Sight! That turned out to not exactly be true. Kazza definitely came along for the ride. We managed to keep her in abeyance a lot of the time but we couldn’t help her coming to the fore from time to time.

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You see climbing up a mountain(ish) pass (to Wineglass Bay Lookout) and down the other side (to the beach itself) is hard work for a girl with a breathing problem but even worse for a girl with a competition problem. I constantly compete with myself (and some would say others too) and consequently get quite frankly pissed off with myself if I can’t do things. Which we all know is of course ridiculous!

IMG_4674So getting upset that I struggled to walk up a steep hill when I could barely walk to the end of the road this time last year is crazy. Getting upset because I was exhausted at the end of an 11km walk is also ridiculous but I just can’t stand to fail. I can’t stand to admit that I am not invincible which of course is how we got into this stupid mess, September 2013!

Australia was spectacular and was without doubt a holiday of a lifetime – I will always remember pretty much everything we did over those three incredible weeks. Every day brought a new adventure and a new sight that was unforgettable.

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The consequence of this incredible holiday from a health perspective however is that I returned exhausted. My week off to recover afterwards barely touch the sides of my exhaustion (largely because I filled it with activity everyday!). My week off rather than constituting doing nothing, constituted doing lots just not running! That, I convinced myself was a week off.

I had begun to recover and had even done a successful yoga class when our shipment arrived. This involved two solid days of hard work lifting and carrying and packing of boxes. Without leaving my house, I managed to accrue the guts of 20,000 steps a day and burned about 4000 calories! This was not what my body needed. We won’t even get into the psychological impact of lots of wedding presents getting smashed!

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Of course mixed into all of this was more issues with our washing machine which I of course had to deal with while still trying to direct hundreds of boxes to vaguely correct rooms around the house! Exhausting both physically and mentally.

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Note water gushing over the top!

Of course that washing machine repair failed (shock horror) and so it required, a few days later, another fight with a plumber over the course of three hours that water shouldn’t be dripping out of the hose pipe that, unlike what he claimed,- this was not ‘normal’. Every failed attempt to get me to agree that the leaking hose was fixed led to a phone call to his boss and every conversation started with him in Marathi / Hindi explaining that, ‘mam says there is a leak but there is no leak’ quickly followed by my saying (in English), ‘don’t say there is no leak when there is a leak!’ His boss seemed to inform him each time to fix it again! We got there in the end but it did take three hours! Once again, mentally exhausting.

Now that little adventure was followed by my deciding I would get a guy in to clean my windows inside and out. They were beyond filthy – still covered in the construction dust from when they were built a year ago. In places, it was difficult to even see out the window! I agreed to a price and when he would come. I didn’t on the other hand grasp the fact that it would take about 6 guys and about 9 hours of work (over two days) inside in the house and another 2 days to clean the outside of the apartment (on ropes from the roof!). Why would I ever have considered that it would take this long?! Sure our apartment is big but good lord it’s not that big!

While the guys are here, you have to hang around – I can’t exactly leave them unsupervised but it means you can’t really rest. I feel too uncomfortable with having people in to do such jobs to lie on the sofa and watch TV or with them moving around the whole time – go to bed for a few hours. So I continue to potter about, convincing myself that unpacking those boxes or carrying that heavy load is ok when really I am doing exactly the thing I shouldn’t be doing!

These adventures of course are unusual. They are in addition to the everyday challenges that you are faced with here. Where can I buy fruit? Where can I buy vegetables? Where can I buy meat? When will these places be open? When will I have the car to go and get them? What price am I willing to buy the rickshaw driver who is trying to rip me off? Where can I get big black bags for the dustbin when all I can find are little ones? Where do I find cat litter that isn’t vile and disgusting because the cats are hating what I got for them!? Where? When? How?

Over the last week therefore I can categorically say I have begun to feel again the way I did 18 months ago. I am reminded again about the difference between fatigue and tiredness. I am not really tired, I am seriously fatigued. A blog, many months ago now, talked about how I had to walk the tight rope between doing too little and doing too much. Too little and I would make myself too physically unfit to deal with my illness and psychologically do damage by isolating myself from the world but equally doing too much would make me physically more ill and make it harder for me to psychologically deal with my illness (my brain gets tired just like my body does).

cropped-20140318-0801571.jpgThe tightrope is back and once again nobody has given me any safety ropes. While I feel I am in a much better position than I was back then, it does without question scare me. This feels like the worst relapse I have had since I seemed at least on the outside ‘to be better’. Just like I coped before I can cope again.

And here, far more than back in the UK, will help me recover. Here, I have lovely Maggie who comes and cleans my house. The weather is warm and that always helps. I don’t have the pressure of trying to return to work. I can cheat and buy my meat from a 5 star hotel and order my vegetables online (even if the price and quality isn’t the same as buying them elsewhere). I have a driver so I don’t have to worry about not being able to drive or getting the energy together to use public transport. There is also an incredibly supportive group of people here that will help me to look after myself (just like I had back in the UK).

So, rather than seeing my current state has something traumatic and worrying, I see it rather more as a warning, a reminder of where I have come from and where with very little trouble I can go back to if I am not careful. So I will be careful (well, I will at least try).

I didn’t write this blog to worry people but more as my way of saying – ‘Please, those who have been on Karen Duty in the past, can you return to your posts’ and ‘those who are new to Karen Duty, can you please look out for me and be bossy and tell me off for doing too much and understand if I don’t do as much as I was.’

Beware the Ivory Tower

11020776_10152842712541820_3240351471761126711_oI live in an ivory tower, quite literally. I am on the 17th floor of an apartment block that is quite ivory looking. Not only that our block – one of seven in our society, as they call apartment complexes in India, has the biggest apartments and the best views. one_north2I have a wonderful driver, Datta and a maid, Maggie who I complain about but who is learning. I have a wonderful fruit and veg guy who comes in his little blue van twice a week and sells great stuff at cheap prices.

Yesterday, after a mild ‘what the hell am I going to where on my feet in monsoon panic’, I went and bought a pair of Clarks sandals (Clarks simply because they fit my big clunky Irish feet). Discussions were had this morning on whether Chris and myself and some friends would all go out for dinner together on Thursday night.

Last week, we bought a gorgeous new bed and a stunningly unique table and bench and had chairs re-stained to match them. I ‘helped’ a friend yesterday bring in lots and lots of plants and trees that she bought for her balcony – I intend to do the same on Thursday or Friday.

Yesterday, my driver drove me 30 minutes to a shopping mall only for me to discover I had left my wallet at home so I got back into the car and he drove me home and then drove me back to the mall.

Last Friday, I went out for dinner with Chris and two friends. We had three bottles of wine and lovely Datta was waiting outside the whole time to take us home when we were ready.

I live in an Ivory Tower practically but also metaphorically.IMG_3407

Daily I drive by the ever evident poverty: the women walking miles in the heat so they can go and clean somebody’s house just like mine; the child begging on the street, clearly drugged so she would keep still; the construction village just below my 187-02-beggar-in-manilabalcony where 500 people live in tin sheds with one communal water source; the little children that come and beg at your window when you stop at traffic lights; the whole families you see digging the streets with little more than their bare hands; and so many more examples.

It confuses me.

Tata would not have employed Chris if they felt he did not have a skill that was not readily available in India. The cost of bringing him here and maintaining us here is far too much for it to be a crazy idea that simply wasn’t thought through. Surely, his presence here is playing a role in the development of the Indian economy – hopefully opening up more people to opportunities to better their own economic situation. Our relative ‘wealth’ surely also gives opportunities for employment that otherwise wouldn’t exist – maids, cooks, drivers, bar staff, mall employees, relocation agents etc.

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On the other hand, I am in danger here of becoming blasé to the poverty around me and thinking that the lifestyle I lead here is nothing special. It would take nothing for me to never walk on the streets here but to always head to the clinical safety of a mall or the ‘expat approved’ restaurants.

If I do, I will not experience India – I will only experience a part of it. The last few weeks have convinced me more than ever that I must do some form of charity work here. I have a skill that is in high demand and really I must use it. I thought previously that I would do paid tutoring. Indeed, perhaps I will but I think I must remember that to sacrifice time that I could be spending with a charity for the sake of my own personal gain is probably not the best use of my time. I am in th38d7297d4fb9e15e756b128979428167e very fortunate position of not needing to work economically.

Luckily, some connections have already been made with one charity where hopefully from September I will go out to a village once a week to teach the girls English – thereby giving them a better chance of having choices in their lives. The more educated they are the less chance they will marry young and live a life of drudgery and being considered secondary to the men around them. I do hope this opportunity and others will begin to emerge that will give me a role in India more than being the housewife and the lady who lunches.

I need it.

A Man Shaped Print in the Wall

Today’s blog is slightly different from normal. Having M.E. has made me more empathetic and understanding of the suffering of others with debilitating illnesses. This blog is aimed at raising awareness of just one of these.

A very close friend of mine works in a university in London. Part of her job is to project manage the upward extension of the Physics Department. By that I mean they are taking off the roof of the building and adding more floors. After removing some wall panels on the top floor, the builders discovered a man shaped print on the insulation. It was clear that a builder, probably back in the 1960s when the building was built, took a running leap against the wall. We can only assume it was something fun to do after a long day of work.

Initially, the idea of a man leaving such a print was really quite funny. When she told me I could just imagine the scenario – the man throwing aside his hard hat with a yelp of, “Come on guys, watch this!” taking a running leap at the wall, splaying out his hands and legs as he makes contact. Afterwards all the guys laugh at the craziness of their colleague. If it had been in the days of mobile phones no doubt videos would have been taken and spread throughout the internet via Facebook or the like.

It was only when my friend followed up with the fact that the indent had actually been made into Asbestos that the laughing stopped and the horrifying truth of the situation dawned. We stopped and wondered whether this gung-ho builder is still alive today. How long did it take him to realise he was sick? How long did it take him to die? Did he die after his children grew up or did he leave small children behind wondering what had happened to daddy? Did he ever realise himself that it was that one foolish leap that had precipitated his death? Has he succumbed yet to the cancer that may well yet ravish his life should he still be living today? Questions clearly that must go unanswered. We can not say whether this man is living or dead.

Until recently I had only vaguely heard of the cancer – Mesothelioma. I knew that it was primarily caused by exposure to Asbestos but I didn’t really understand just how serious this illness is. I was contacted recently by the husband of a woman who was a one in a million survivor of Mesothelioma as a consequence of Asbestos exposure. Through him I have learnt about the true nature of this disease.

For most of us we only realise to just what extent we are surrounded by Asbestos when our place of work or education is being refurbished – the building area is sealed off by men in alien suits. A few days later building work continues as normal and you think no more of it. Asbestos however is to be found in most buildings dating from before the 1980s or so. It was only then the true reality about just how dangerous Asbestos is led to changes in building habits although not necessarily regulations.

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While most forms of Asbestos are now banned in the European Union, it is still legal in the US. In both the UK and the US on average 3000 people a year have their lives torn apart by a diagnosis of Mesothelioma. Both countries see these numbers rise year on year.

For me I also didn’t realise that the most minute quantity of Asbestos can cause this disease, as indeed can secondary exposure when you touch material that has Asbestos fibres on them. Years, if not even decades can pass before you begin to show signs of this illness. On diagnosis most specialists will give you only about 10 months to live. 10 months to sort out all those things you had dreamed of for the future. 10 months to say your goodbyes. 10 months to make sure your children will be financially secure for their future.

Some do beat the diagnosis as the wife of the man I have been conversing with did. These people are rare, very rare, they are the extremely lucky ones. What gets me though given I have a disease that I could have done nothing to prevent getting, is that Mesothelioma is 100% preventable. I would have given anything to prevent myself from getting M.E. There is no part of me that wants to have my life on hold. There is no part of me that wants to not be able to dream of my future. There is not one part of me that likes feeling exhausted and in pain day after day.

When I was therefore contacted by The Mesothelioma Cancer Alliance and asked to write a blog aiming to increase awareness of this disease and how it is 100% avoidable, I felt that if just one person avoided contacted with Asbestos as a consequence then this would be an incredible achievement.

Previously I may have been a little blasé about the dangers of minute amounts of Asbestos, I was sure it would have had to have been large quantities. Today however I know that being blasé in the schools I work in, the council offices I visit or the hospitals I attend could ultimately cost me my life.

To learn more about this illness visit Mesothelioma Cancer Alliance

To help raise awareness of mesothelioma and the risks of Asbestos exposure please share this blog by using one of the buttons below.

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