Proactive husband makes Carer-wife happy

 

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Being married to your Carer must be really annoying. But, I never give up on my husband, I believe in his capacity to progress and develop, even if there are times when he doesn’t believe in himself. I also refuse to accept that a life sat passively in front of the TV without any contribution to the happiness of other people is a good thing. Yes we all love to veg out in front of a good programme,  (‘Cuckoo’, ‘Death in Paradise’ and ‘The Night Manager’ are my current favorites) but this must be in balance with other activities. Today this balance was achieved – I felt so proud of my husband, just for little things but important steps forward.

One of the virtues we have been discussing a lot recently is being ‘proactive’ – and today I could see this shining through his whole being. I think this quality be a tough one when you have an ongoing condition to cope with. Because of his MS some days Ramin’s legs ache so much that he sleeps for a few hours in the afternoon or goes to bed at 8 or 9pm. It’s hard to think  what clothes need to be washed, or a script idea, or what friend would love a visit when you are in pain. Also Ramin has short-term memory problems, so we can consult the day before (or the week before) and he’ll agreed to do more of this or that, but it can just disappear into the ether, again not because of a lack of willingness but because he just didn’t remember! And there’s no point writing things down if you can’t read your own handwriting!

You see, another MS symptom, that Ramin is learning to overcome, is a disturbance in hand-eye coordination. When Ramin was very ill back in 2003 and spent months recovering in a rehabilitation clinic, one of the skills he seemed to lose  was the ability to write legibly (and remember Ramin achieved a 2:1 Degree in Film and Television from Aberystwyth University in 2001) and so in the past few months, we have been focused on developing this  – so that he can write notes to help him remember things, as well as to be able to write down creative ideas.

My Dad wasn’t feeling well last night and we had stayed overnight in his home the night before. I had planned on going home in the afternoon and then visiting a friend in the evening. As the day went by, my Dad’s condition worsened (not a serious illness by the way, he’s recovering from a tooth abscess and the awful effect antibiotics had on his system) and I realized he just needed me to be there for longer. Yet we have a cat at home who needed to be fed. I consulted with Ramin and he immediately suggested that he get the bus home, feed Sophie and then come back over, by bus, in the morning. His legs were aching and it was a cold night – but without a thought for himself, he allowed me to stay with Dad while the responsibility of our cat was taken care of. Two minutes later he was walking down the road and I started to make Dad his dinner.

This morning, Dad felt brighter, so he drove me back home (after my German Skype lesson) and Ramin had already done a few bits of housework and as soon as lunch was over, washed up all the dishes. Amazing! It’s not that he was lazy before, just that due to his feeling tired a lot of the time – both mentally and physically (these are typical MS symptoms) it is often  difficult for him to see what needs to be done at home without constant reminders.

Also, without my asking him, he sat down and read 12 pages of his current novel (‘A Drink Before the War’ by Dennie Lehane, the fifth book he has ever read – this has been a long process starting with reading a page a day about three years ago!) and told me he was really getting into it.

So today, the first day of ‘Ayyam-i-Ha’ (Bahá’í intercalary days) was a day of celebration, not in the usual sense of balloons, parties and cake – but in the celebration of thinking and doing for your own self and for the well-being of others. Its a long journey for us both, but it’s well worth the proactive effort.

Be thou strong and firm. Be thou resolute and steadfast. When the tree is firmly rooted, it will bear fruit….Be thou not discouraged. The trials of God are many, but if man remains firm and steadfast, test itself is a stepping stone for the progress of humanity.” ~ ‘Abdu’l-Bahá

 

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Why I will never have a BFF (Best Friend Forever)

I used to have a ‘best friend’, but not anymore. There was no falling out, no melt down as we stormed away, never to speak again. In fact a certain much loved friend of mine and I grew closer when we both made the clear decision  that being ‘best friends’  was both an inadequate way to describe our connection and an exclusive barrier which made us compare our particular friendship with that of our other friends. So yes, I do have a friend who I feel very close to, but I also have another bunch of friends who I love dearly – so how can I say just one person is my ‘best’ friend when all friendships are different, irreplaceable, wonderful and unlike any other?

Previous to this I remember telling my husband that I was about to call my best friend. His response was purely, ‘Am I not your best friend?’ At the time I decided that no, he was my husband and my best friend was a different kind of friendship entirely. Which of course, it is in crucial ways, but in many ways, not.

When Ramin’s ability to talk with me was severely disrupted by his multiple relapses, I went through a heartbreaking period of grief where I felt I had lost my husband. We couldn’t chat together, consult about decisions, read the holy Baha’i writings and discuss them together, let alone say prayers. A huge part of what I had considered as exclusive to marriage had been paused, and stayed paused for many years. Going through this experience, made me turn to my parents, my sister, my friends and Ramin’s family for support, particularly in figuring out how to manage our lives and emotions. Ramin spent months in hospital and then rehabilitation, learning to walk again, to feed himself and so on.

I felt desperately sad for him, but also devastated that the Ramin I had fallen in love with, chatty, outgoing, attentive, creative, protecting, expressive Ramin – was severely damaged. I didn’t know if he’d ever get back to who he had been again.

Over time I learned that all Ramin and I needed to do was love each other, expressed in the simplest of ways at first – sitting out in the sunshine, holding hands / my pushing him in a wheelchair to a simple church in the hospital grounds in Duesseldorf Uniklinik where I could sing prayers out loud for him (and he’d join in with a weak, yearning voice that teared my heart apart) / cuddling on the hospital bed, not caring about people walking around us. We didn’t need grand gestures or even deep and meaningful conversations. We just needed to be there for each other.

This difficult experience taught me that I had to redefine my understanding of what a relationship is. Not only in my marriage, but also with my friends and family members. Sometimes we expect people – especially our spouses – to be our everything! We have to fit completely to be right for each other! We have to be physically, emotionally, mentally and spiritually compatible, or the marriage just isn’t going to last! This kind of expectation puts a huge strain on the relationship as it asks both people to be ‘perfect for each other’ when actually no one is perfect and we all make mistakes. In marriage you learn to grow together through facing life’s tests and trials (more than the happy times!) with unity and mutual support. Ramin and I managed to do this because he just loved me all the time and continues to love me through all the ups and downs we experience in life.

So when I talk to the many friends I love dearly, when I visit them, laugh, chat, eat, cry, pray, serve, watch films with, discuss spiritual principles in action or just am quiet with – I don’t focus on whether this friend feels closer to me than another, I just love them and feel loved by them. Yes there are some friends I spend more time with than others, and some I’m in more contact with than others – but it’s not about a holding on to one or another relationship. That’s a kind of material attachment which doesn’t recognise the eternity of love, right?

In the next world we will always be connected to the people we love as the spiritual worlds of God are made from love Through love (as well as all the other sparkling beautiful spiritual qualities that we develop in this next world such as trustworthiness, honesty, patience and kindness) we will experience a true reality, removed forever from this physical body and all it’s limitations. How utterly glorious!

So, you may think it’s sad that I don’t have a best friend forever, but I think it’s just awesome – as I love my friends and family dearly, but my expectations of them are not limited to this world, are not all heaped upon one person and I don’t have to keep proving to myself, to them or the rest of the world that we care for each other. It also means that others are not excluded from my friendships. The only person you can’t share ‘some’ things with, is my beautiful husband – and that’s a sacred relationship, unique to us alone, thank God!

If you are my friend, you know that I love you. So that’s enough.

The 10 Reasons why I Deactivated Facebook (And 5 Reasons why I Went Back)

Recently I deactivated my Facebook Account for about a month and here are the reasons why:

1. BABY PHOTOS Every time I saw a baby photo or cute kids photo/video it hurt my heart. I found myself involuntarily comparing my life to the person’s life – especially the mother – and for a moment I just felt bad about the path my life has taken. I don’t feel like this when I see a friend’s baby in real life as I can build a relationship with the child which is good and full of love. I feel privileged to have had all my life’s experiences and grateful that I have a Faith that sustains me daily, I wrote more about coping with this part of my life in my blog post ‘A Child-Full Couple‘ during my month long break from FB.

2. OVER-SCROLL vs CREATIVITY I spend waaay too much time scrolling and could be doing something (writing, singing or composing in my case) creative instead.  I don’t need FB as a distraction on my phone or my computer (which is also my place of work). (Since my break, I am much more detached from scrolling, I have curbed my natural slide into procrastination, feel less distracted and I am being waaaay more creative.

3. JUNK MAIL If I’m honest, I’m just not interested in people’s weight loss, football score opinions, posters telling me I’m eating a burger wrong, videos about animal cruelty, petitions to end this or that war (like they really have an influence??!! It’s just another  way of gaining email addresses), games to tell me what spirit animal I am or what religion I should be and so on… It’s like I am letting a pile of junk mail flow through my brain every time  – just to see if there is any nugget of interest hidden in there. Apart from the cat videos of course 🙂

4. I AM HAPPY BEING ME WITHOUT YOUR APPROVAL
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FB can feel like a big bowl of white pasta that has very little nutritional value and can put you into a stupor as you let trivial information flow uncontrolled into your mind. I don’t want people to know where I am all the time, what my feelings are or what my opinion is on a Pop Star’s love life, what holiday I had or the size of my house. These things do not reflect my reality. I am a spiritual being having a physical experience and my time here is precious, not to be killed off in trivia.

5. THE OVER-POSTERS People constantly over-post where you get ten posts all about more or less the same thing. We don’t hijack conversations in real life so that we can obsess about one subject do we?! And we don’t dump a random series of information into people’s laps hoping they’ll ‘like’ us – so why do we think this is effective on social media as a way of connecting people?

6.  LACK OF TRUE INTERACTION  I have a large number of friends on FB yet keep seeing the same 20 people’s posts over and over again. Yes I love these friends but I feel the process of connecting to many people isn’t actually what happens. We are promised diversity and interaction yet in reality we are stuck in the same room as the same people every day. Yet the people in my room are different to the people in your room and different again to all the people present – so it’s like there are 20 people all on the phone to 20 different people having brief conversations when they could just put down their phones, hop on a bus (or get on Skype) and talk to each other face to face for an hour. Cuppa tea?

7. ADDICTIVE I don’t like the pull of something when I know it’s not good for me – a pattern of behaviour that demands certain responses. I want to have a day much freer to be able to do, say, comment, respond, interact on a deeper level. This is also why I don’t drink alcohol, smoke or do drugs. I also can’t play video games for long – they suck me in and suck my time away.

8. QUICK JUDGEMENTS FB has the power to train our brains to make quick comments and thoughts (and judgements –  like knee jerk reactions) and I feel this form of social media can trivialise the important stuff. Over a long period of time where connections are always brief and immediate, it could damage human relations to an irreparable extent. Surely we should be promoting self-reflection, deeper interactions as conversations are raised higher than the mundane – reflecting how humanity is a noble creation of God?

9. PSEUDO-SPIRITUAL MEMES
pseudo 10. CHARITABLE STATUS GAMES Here’s an excellent article which explains why much better than I could: Breast Cancer is not a Facebook Status game.

And the reasons I came back to Facebook are:

1. MY CONTACTS

With the Flynns in Dormagen

Ramin with the Flynns in Dormagen

I now have a large group of friends who mainly communicate via Facebook Messenger, there are also many for whom the only contact details I have for them are on Facebook and if I want to stay in contact with them, then I’ll have to stay here. 2015-03-23-1427132139-7726406-IMG_1862.JPG

If I’m really serious about leaving FB forever, then I need to invest the time to transfer all their contact details into my ‘phonebook’ or email contact list. Also, I do love chatting with friends who live across the pond. Makes the world seem smaller.

2. SHARING Facebook is an amazing way to share information. I was overwhelmed when I saw how many times one of my blog posts had been read, shared and responded to. Many women wrote to me, to tell me their stories and to let me know that the article has helped them. Without Facebook, this wouldn’t have been possible.

3. IN THE LOOP I found out WEEKS later that two lovely young friends of mine are getting married this summer. Yes, maybe I need to be more patient, but this was hard! I didn’t like being out of the loop!

4. GOOD NEWS TV The News on TV mainly reports negativity and in the UK predominantly focuses on the economy (almost every story is driven by the economic benefit or deficit of an event). My friends on FB do a great job of sharing good news, exciting projects, new music and film as well as news of a more personal nature. Yes, I do filter out those who complain, moan and share horrible things – apologies if you are one of them!

5. HUMANS OF NEW YORK

Screen Shot 2015-03-23 at 16.41.13 So, now that I am back on the book of faces after my break – I don’t scroll as much, click on every survey or quiz and I’m more proactive in chatting with people to make sure our friendships are not  trivialised by short bursts. I recommend taking a few weeks out, as it helped me prioritise my creativity, gave me time to reflect on how to use my time effectively, rather than merely moving through habit. Habits can be dangerous when they are unconsciously formed by following the trend. I can see myself coming off completely some time in the future. Or at least having more breaks. Perhaps we all need to communicate more and scroll less.  And the baby photos are ok, I guess….but cat videos, oh we need more of those!

p.s. Here’s one just in case you felt you were missing out:

Journey through Patience

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A game my sister, Leila, and I used to play with my Mum is called ‘Journey through Europe’. It’s a board game where you have a large fold-out map of Europe (the board part) and you are given nine cities to travel to and through (on nine cards), departing from and arriving back at the original city. The most complicated part of the game is planning your journey as you navigate a restricted flight path, sea-crossings and travel routes as well as finding cities you’ve never seen the names of before on the map itself.

Ramin and I now play this game, as well as Scrabble, Monopoly and Memory as part of his brain training sessions. When Ramin was first recovering from his year of relapses, he had Ergo-therapy in Germany where he and his therapist worked through various exercises together, including games. So when I officially became Ramin’s Carer a few years ago, we decided together that for the two days a week when he is not Volunteering in Oxfam, we would play such games, and do our best to have the patience to complete them without killing each other!

You see, the challenge for Ramin and I is often my lack of patience with Ramin’s slower pace and his lack of patience with the benefit he is meant to be receiving from playing any of these games. Also, if we’re totally honest here, he would much prefer to leave his current neural paths as they are and watch a comedy show on TV, or listen to music, or sleep (all passive activities) than have to think and plan, remember details and work towards a goal. Yeah, I know people without MS have difficulties with being pro-active too – in fact many of my female friends get frustrated with their passive male partners and it is helpful for me to realize that sometimes its not an MS thing I’m dealing with, but a female-male thing!

For me, it’s the hardest quality to learn. I think quickly, proactively. I’m a problem solver, a creative thinker. I like to analyse, consult, discuss options and figure out a new way of making something happen. Because of his particular journey with MS (the experiences can be very different) Ramin has been slowed down by an illness that took away his independence for a long time. Relapse-free, he is now in the slow but steady fight to recover and he gets frustrated with himself, with me and his body, his mind. Yes you can be patient in the moment, but what about staying patient year in, year out where you know you are progressing, but in the actual moment it’s just a struggle, an exhausting struggle with a terrier-like wife next to you who won’t let go?

So how can we stay patient, when working with our loved ones on a task? Can we do this alone? Or do we need to ask for a higher power to assist us?

In the Baha’i writings, Baha’u’lláh says, “He, verily, shall increase the reward of them that endure with patience.”

My Dad often reminds of of this teaching. It’s helpful to me because I know that sometimes Ramin and I are both just enduring – keep going – don’t give up – yes, its tiring – yes, it’s annoying – yes, it makes me angry -yes, it frustrates me – but endure with patience. And why? Well because of this:

Baha’ulláh also says, “The steed in the Valley of Search is patience; without patience the wayfarer on this journey will reach nowhere and attain no goal.

So for Ramin and I to achieve our goal of his increasing independence we have to ride the horse of patience, through the game of Journey through Europe, through all the ins and outs of our marriage and through the way we react and respond to each other. This also says to me that on our particular life’s path, staying patient as we suffer through (endure!) brain-training exercises while speaking lovingly with each other (and accepting our different capabilities) is also part of the development of our souls. It’s not just brain-training for Ramin – both our higher natures strengthen as we grow closer to each other and ultimately, closer to God.

We play Scrabble for brain training

We play Scrabble for brain training

Read more about the struggle for patience from another Bahá’i blogger: http://onebahai.blogspot.com/2010/02/its-virtue.html#ixzz3USGHgO9A

 

A Child-full Couple

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Ramin and I are now categorised as ‘A childless couple’. We have tried to get pregnant naturally for many years and finally went through a gruelling round of In-vitro-fertilisation (IVF) last Autumn and yet, for reasons still largely unknown, we conceived 3 embryos, yet did not stay pregnant. One round was enough for me. I asked God the question and received my answer. Previous to trying IVF we actually went through a year long process of applying to become Adoptive parents, yet sadly this route was closed to us. We could fight it. We could try somewhere else, but at the moment – this path is exhausted (and exhausting). We’ve now accepted that – unless a miracle happens – we will not be parents, and are moving on.

It’s tough for us both.

Coming to terms with this has been a longer process for Ramin than myself. Perhaps because my IVF experience was so physical. It’s another test related to MS that we both have to cope with, and it does often feel like the hardest part. It’s all the ‘what ifs…’ which play sad tunes on our heart strings.

Yet when I coo at and hold a baby in my arms, I instantly feel happy for the parents and joyful to be in the presence of a tiny soul. I don’t feel resentful or sad at not having kids myself. Here is another little person I can love, and it’s beautiful. Its the same when a friend announces she is pregnant! Wahoo! Another one of life’s miracles!

Today, I want to challenge that phrase ‘A childless couple’ as I think it’s misleading, comes from a materialistic view of life and annoys me because it assumes Ramin and I are missing out.

We live in a time when the quest for possessions, status and fame is well and truly up there with the quest for enlightenment. This influences the way we talk about and describe life’s achievements or failures. We all know that money and objects and fame does not make anyone happy in the long-term. In this society we are insidiously groomed to spend our whole lives aiming for spiritually empty-calorie goals and think less and less about feeding our soul spiritual food that would enrich us beyond measure. So a couple who do not have children are described as ‘A Childless Couple’ in the same way that a single woman is called ‘A Spinster’. Many people have ‘successful careers’ yet cannot stay faithful to their wives or husbands. So many famous movie stars, musicians and artists have died young through alcohol abuse or drug-overdoses (Oh River Phoenix!), yet we still envy their successes and wish we were more like them. The state of our soul is not as important as the estate we leave behind and then we enter the next world in a state of complete spiritual poverty. Yeah, that’s successful.

One of my favourite quotes from the Baha’i writings is this;

The soul of man is the sun by which his body is illumined,                                                          and from which it draweth it’s sustenance. (Baha’u’lláh)

So, in the light of this teaching, I choose to re-examine our societies’ established assumptions and judgements. A change in our perspective from materialistic to spiritually focused is not just a philosophical exercise, it’s a foundation for happiness.

‘A Childless Couple’ as a phrase annoys me, because of the word ‘less’. We don’t go around saying ‘An Abuse-less Couple’ for married couples who are loving to each other or ‘A Meat-less Couple’ for a married people who are Vegetarians do we? Also the phrase is just plain wrong and misleading!

Ramin and I both have sisters who have children, 3 on one side and 4 on the other. We love these kids. We talk about them all the time. I see elements of myself in the Welsh ones and elements of Ramin in the German ones. Spending time with them is joyful, rewarding and sometimes a bit too noisy (due to our own home being quieter), but I look forward to having their company and I feel I am in exactly the right place at the right time when we are with them.

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Our dear friends Vicky and Tom have two girls, who call us Aunty Fleur and Uncle Ramin. We love them and will always be there for them. I was living with V & T just before their first daughter was born and I have many wonderful memories of carrying her, going for walks with her in a sling and playing with her as a little one. Their second daughter is a joy and together the girls are so exuberantly loving!

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I have many friends with children, some live nearby, some live an hour away, some many hours away. When I see them, I enjoy the children’s company as much as their parents – and I always wonder at the different personalities, physical attributes, enthusiasms for this and that subject in life. I work on how I can be there for them as a trustworthy, spiritually minded adult. Or sometimes I just read stories before bed or sing silly songs to make them giggle.

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I have my own Aunties and Uncles who gave me time and attention, who loved me as a child and who I feel very close to today. One couple in particular, Des and Cynthia, who currently live in China, do not have their own children  – yet this never bothered me as a child. Des is an artist and I remember him painting with me as a child, chatting about life and having long deep conversations with my parents. My impression of him is that he is a laid-back Cowboy who has hung up his boots (even though his family are Irish/English) and I always found him fascinating to be around. When Des and Cynthia come to the UK, they often stay with us for a few days and the connection is just as strong.

The African proverb,  “It takes a village to raise a child” is as relevant now as it was generations ago. In fact I would say even more so in a time when so many loud voices clamour for our attention such as the Media, the passion for Celebrity, the ever-increasing competitive nature of work, play, status and the incredible ability we have to access knowledge. Children need positive examples in their lives, people who can guide them to have spiritual values and overcome tests through inner strength. Aunts and Uncles can be of great support to parents in this capacity. So I see it, as a Aunt that its my responsibility to help every child I come into contact with to shine their light, not only for their own happiness but also for the sake of the whole world. If we don’t help fan the bright flames into life, then we are assured (and can see the evidence in the news) the same capacity for bringing light will be diverted into a capacity for reflecting the lack of light, the darkness.

“Every child is potentially the light of the world,” ‘Abdu’l-Bahá would argue, “and at the same time its darkness.”

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“Training in morals and good conduct is far more important than book learning,” he said. “The child who conducts himself well, even though he be ignorant, is of benefit to others, while an ill-natured, ill-behaved child is corrupted and harmful to others, even though he be learned.” Of course, he commented, instilling both moral education and book learning in children would be preferable.

“Give them the advantage of every useful kind of knowledge,” ‘Abdu’l-Bahá wrote on the subject of child rearing. “Let them share in every new and rare and wondrous craft and art.” Yet he wasn’t suggesting a life of indulgence. “Bring them up to work and strive,” he added, “accustom them to hardship. Teach them to dedicate their lives to matters of great import, and inspire them to undertake studies that will benefit mankind.”

(From 239 Days in America. Click here to read more)

Not being able to have children has perhaps given me a deeper understanding of parental love in that reaching out beyond the immediate family (of my marriage) has caused me to reflect on how every person, with children or not (married or single) has an important part to play in the health and happiness of the village – which in this time in the history of mankind is now the whole world, a global village.  When we broaden the circle of love to the children in the neighbourhood or the region, the country or the continent and finally the whole planet, there are children all around us! Its all a matter of perspective. And just imagine what would transform if we all thought globally, saw every child as our own, loved every child as a member of our family.

So yes, Ramin and I have no children, but we are not childless. It’s our choice about how much we engage with the children that determines how much love we feel and receive back. Of course friends and family who are parents have a more engaged and intimate and I am sure more rewarding as well as testing relationships with their children than we do as Aunty Fleur and Uncle Ramin. Yet our related and non-related nieces and nephews are a very precious part of our lives. And when I think back to all the children who have been part of my drama classes over the years in Scotland or in Sherman Cymru, or who sang in whole-school assemblies with me in Primary Schools in Northamptonshire, or who learned beat-boxing and step-dance with my brother and I in Mien Yang in China, or who learned to be confident and sing their hearts out at the Summer School last year in Romania, I have to ask myself, am I childless? No, I’m child-full.

We are a child-full couple.

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Oh… and we sleep really well every night 😉

Sparkles and Musical stirrings

After encouragement from my friends Vicky and Stephen, my Dad and my husband – I’m back on the ole writing horse and will be posting my thoughts, stories and ramblings here once again. I can’t believe its been an actual whole year since my last post! Time does go past waaaay too fast. Talking about ‘fast’ – it’s The Fast again, the most holy month in the Bahá’i calendar. I always see this time of year as a spiritual and physical re-boot. I find fasting tough but the dawn prayers beautiful and invigorating, I get cold and tired – but also stop and think, pondering where my life is at and what I want to change, develop, transform. I’ve been ill since Monday, so as I’m feeling more or less okay today – I am going to attempt fasting tomorrow and hopefully continue on then until the 20th. I’ll let you know how I get on. Part of me wonders why I’m sharing my thoughts about fasting yet again. Surely I should keep quiet and not tell people if I’ve fasted or not? They would then assume I am fasting rather than being fully aware of my up and down relationship with this Bahá’i law.

However, I think being real with people, especially when it comes to spiritual practices, is important and maybe my experiences will help someone connect to the Fast in a different way, or will at least show that struggling  and staying in the fight, rather than just giving up at the starting post is an important part of the journey.

So it’s now a year and nearly 3 months since my Mum passed into the next world. It’s still an incomprehensible occurrence to me. How can this vibrant, enthusiastic, ever-loving and ever-present woman be dead? Well, of course, she isn’t dead.  She hasn’t stopped, or disappeared or entered a nothingness. She’s very much alive and present, just in another form. I imagine she is like the image at the top of this post, full of vibrant energy and free to be, to go, to do, to embrace, to surround, to sparkle.

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I dream of Mum a lot; she’s always by my Dad’s side and she’s always well (no disabilities) and full of energy. It’s great! I often feel my dream world is more real to me than the conscious reality. It’s like I visit Mum (or she visits me) in my dreams, then I spend time with my Dad when I’m awake.  In fact a lot like that amazing TV programme, ‘Awake‘ with Jason Isaacs (I wish they’d make a second series!) which I found fascinating. Here’s a bit about it from Wikipedia:

“Michael (Jason Isaacs) lives in two separate realities after a car accident. In one reality (where he wears a red wristband), his wife Hannah (Laura Allen) survives the accident; in the other reality (where he wears a green wristband), his sonRex (Dylan Minnette) survives. Michael does not know which reality is “real” and uses the wristbands to differentiate the two….At work, Michael’s erratic behavior triggers clashes with his team; they do not know about Michael’s uncanny ability to solve crimes using details from both realities.”

That’s just the kind of idea I wish I had had, for my book! Such a cool idea.

Anyway… a few things happening in my life right now;

I managed to tidy my study so that it (finally!) works out as a study and a dining area. Only took, what….3 years? Both my violin and my guitar are unpacked and looking at me – hopefully they’ll inspire some music out of me.

Talking about music, I’m now part of a close-harmony singing group with my beautiful friends Kerry and Tessa – we are called ‘Songbirds’ and we’re happy with that name, thank you very much. It will make sense when you hear us. We rehearse more or less every two weeks and are practising for the Naw-Ruz party in Newport on the 22nd March.

Still talking about music, Ramin and I have joined the UK Bahá’i Choir and will take a trip up to Edinburgh, which is very exciting! We are now in the process of learning the songs, slow work for dear Ramin – but great (GREAT) brain-training for him, and excellent patience training for me. If there is anyone out there who would like to join the choir (from any or no faith) then click here and get started! They are still looking for many more members. It’s great fun and singing together is just the best feeling.

Oki-doki, more next time. Hope you are all well – and feel free to add your thoughts and responses to my ramblings. Have a lovely day!

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My love of fashion and clothes (by Ramin)

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I do like fashion very much. To the degree that I prepare my clothes the night before so that I know exactly what I’ll wear. Over the years I’ve become more relaxed with this. When I’m at home I surprise myself sometimes by having a second option which I can decide on, dependent on the day and weather.

My fashion necessity became a bit tainted when I got MS. Something that comes with MS is incontinence when means I have to always have a spare pair of trousers, pants and socks in my backpack in case of accidents. In the past I didn’t want to lose my dignity so I made sure that the clothes I wore and my spares were the same kind of colour and style so that no one would notice that I had changed my trousers. But now, after many years, I’ve accepted the fact that it’s too complicated to have ten pairs of the same kind of trousers or to speak with the voice of my uncle, ‘just wear jeans that you can wash!’.

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Also, since moving to Wales, my style has become on one hand relaxed, on the other bang on trend! I no longer wear suits as an every day occurrence, for example. My wife agreed with my uncle to dress down a bit, especially as we weren’t going to weddings every day! So I followed suit, buddum pishhhhhhh! So I now undergo more ‘smart-casual’ trend. I’m currently wearing mustard colour jeans-cut five pocket trousers, my brother-in-law’s black skater T-shirt and a Gap light grey jumper.

My love of clothes began when my Dad showed me how to knot a tie when I was 6 years old. My Dad was a textile engineer who has always loved the texture of materials, colours, different makes and styles. I remember him going shopping with me in HnM and he could tell the quality of the clothes by feeling the material and determining the weight with one hand, the procedures the clothes went through and the amount of dye. I felt I had a cool Dad. My Dad taught me a single Windsor knot. Later when I was 14 I got a book which had all sorts of tie knots in it, which I studied avidly with my friend Adrian.

These days I volunteer in an Oxfam Boutique in Cardiff. I’ve volunteered in many charity shops over the years as my energies have been limited because of the fatigue I feel from having MS. I’d love to earn work and earn money, but I feel good knowing I’m contributing to society right now.  I love volunteering in the Boutique because the clothes in the shop are of excellent quality and are of high-end fashion origin. They sell quite quickly and are an interesting mix, as are the people who work there!  Here are some photos of our Christmas party last year:

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One time a person donated 30 Georgio Armarni suits for men and women because an old couple had died and their family donated their clothes to us. We often have wedding dresses, fur coats, shirts, baby’s clothes, ball dresses, prom dresses that have only been worn once and lots of accessories. When people donate clothing they can claim tax back as well as helping Oxfam through Gift Aid. There is also a scheme where people who donate clothing bought from Marks and Spencers are given a £5 voucher which can be used to buy anything in M & S. This encourages people to donate to us an buy clothes from us.

As volunteers we have a mixture of old British grandmothers, refugees from all over the world, university students and language students. I get on particularly well with a Cardiff lady called Beryl who is in her mid-sixties and has a tongue-in-cheek sense of humour. There is a lady called Roma, from Hong-Kong who is warm hearted, hard working and up for a giggle. Zan, a lady who walks on two crutches and a pair of sunglasses and a fake-fur lines duffle coat is a good friend. My first words to her were, ‘Just popping in after clubbing?’ which made her smile. She is part of the ‘Alteration’ section and is really good at her job. I enjoy chatting with customers, advising them on what clothing suits them or what they could try on instead and steaming clothes when there’s not much to do on the shop floor.

Why not pop in sometime, have a browse and say hello?

Swimming with an anchor

IMG_2465Ramin’s Dad, Riaz, lives in Monte Pego, Spain with his second wife. We’ve visited them a few times before and went again this year at the end of September. They live in a villa on the mountain, overlooking other hills dotted with white-walled and terracotta roofed villas with swimming pools, palm trees and swooping terraces. The sea is clear and blue in the distance, there are amazing mountains that look like painted perfection during sun-sets or misty mornings and the temperature was warm (27-30 degrees celsius) with blue, blue skies and a gentle breeze. They have a large swimming pool in the garden which I was itching to jump into as soon as we arrived! Ramin and I stood on the veranda and took in the sun, sea and mountains and smiled upon the blue rippled water of the pool in the garden below. Ramin reminded me  he wasn’t going to try swimming in the sea again, like last year, because he couldn’t trust the waves and was worried about losing his balance, but he would swim in the pool.

So on our first free afternoon, I enthusiastically suggested that we jump in the pool and……

Oh no…Ramin really didn’t want to. ‘Are you serious?’ he asked me. I was serious, but I also wanted to have fun!

His physiotherapist stressed the need for Ramin to regularly exercise and let’s be honest, any physical exercise beyond walking is not enjoyed by my dear one, so I kept going on about it (encouraging, persuading, stating logical arguments while continuing to smile (not easy)) until he finally verbally agreed. I was a bit pushy, this is true. The alternative is that I could be pushing Ramin around in wheelchair in a few years time if he doesn’t exercise!

After a painful transition from sun heat to water cold – it was actually hilarious as our various physical bits and bobs adjusted to the different temperature- on the first day we both swam four lengths and I even got him to smile a bit and dance with me in the water.

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Photos: Adjusting slowly to the temperature of the water – yes I know we should have jumped in! / My trying to gently persuade Ramin that swimming is good for us to do together

Yet every day (every day!) the pattern would go something like this; Ramin would firstly refuse to go swimming then would agree to swim after I reminded him of his physiotherapist’s advice, how if he wants to travel with me to China next year – or the year after – he will need to be physically fitter and other such reminders and then would take about 20 minutes to get undressed and meet me by the pool. Once outside, however hot the sun beamed down, he would feel the wind and refuse to get in the water. I’d get in, laughing at how cold the water did feel at first and showing him how once I was in it didn’t feel that cold and I could swim about just fine. Ramin would tentatively reach a toe into the water and then shrink back (hermit crab anyone?) again steadfastly refusing to allow any other part of his body to be exposed to the freezing cold water – yet staying where he was (he could have flounced off!) and fixing me sternly with a glare. When Ramin was finally in the water (a silent scream upon his face for a whole length) he would swim – confidently – for his agreed amount of lengths before immediately getting out and going into the house to have a warm shower. I would then swim until I felt tired and try to recover from the tension I had felt, yet not expressed, while working with my dear hubby.

On the third day I realised Ramin was not finding the process of getting into the water any easier and so remembering discussions about NLP (Neurolinguistic programming) with my good friends Tracey and Martin I had a go at working with a simplified version of a NLP technique called ‘anchoring’. It wasn’t to manipulate Ramin,  it was just to try out a way of assisting him to feel good about our experience of swimming rather than leaving him in a state of dread. An explanation of anchoring is as follows;

Anchors are naturally occurring. Things we see, hear, feel, taste and touch in our everyday lives spontaneously evoke memories, and often feelings as well. While some anchors are neutral – you see a blue car and it reminds you of one you used to own – many trigger some kind of emotional reaction… Many anchors originate in childhood. Often the original experience that created them has long since been forgotten, but the emotional response continues….

Anchors, though, don’t have to be left to chance. You can set them – intentionally, systematically – in support of your desired outcome. If you want to be in a particular state or feel a specific emotion in a future context, you can create an anchor that achieves that..’ (p. 93, reference below)

I have a host of positive memories about swimming (anchors) from my childhood with all the years I’ve swam in the sea and in numerous indoor and outdoor pools, learning to swim with my Dad,  pretending to be a sea creature or a mermaid with my sister and whooshing down slides with my nieces and nephews. Ramin doesn’t have this though as since he’s had MS, positive memories of swimming have mainly been replaced by  negative memories of a lack of balance, slipping and cold water!

So half way through Ramin’s agreed lengths, I gave him a cuddle, told him how proud of him I was, took his hand and danced the tango (my version!) with him in the water. Flicking my fingers up out of the water, I demonstrated how many more lengths he had to go, which made us both laugh as the water spurted in all directions. I asked Ramin to remember this feeling of happy silliness in the water, creating an anchor to create an ‘effective and enduring association‘ (P. 95 ref below) with swimming, so that the experience could be far more enjoyable for him. The next few days did take  just the same amount of persuasion but Ramin managed to swim an extra length each day, we had a lot of fun dancing in the water and he reached seven lengths on the final day even though that day was windy and rather grey with just a touch of sun reaching through.

Once my task with Ramin was complete, it was important for me to forget about him for a little bit and just enjoy swimming outside, appreciating the beauty of the surroundings and floating in the sun dappled water, away from everyone and everything.

Afterwards Ramin told me that even though the water was apparently between 26-28 degrees celsius, it always felt like he was stepping into an ice-rink and it made his toes cramp. He had to swim through the cramp, trying to stretch out his feet while pushing through the breast stroke. He knew it was good for him to swim though, and because he wants to get fitter, decided to push through. He did admit that it was a bit fun too and I’m hoping the anchor we focused on will help him for the future. It’s a relief for me that Ramin was doing his own pushing too, as he’s rather a large man for me to push all by myself!

So, we did swim together and even though swimming in a public pool in our locality will not be as stimulating for me (and I really don’t like chlorine), it will be more comfortable for Ramin and we can build up a habit of going regularly, enabling both of us to get stronger. Now the hard task is moving from our warm home into the cold, wet Autumn air before we even get to the pool!

Funny that sometimes you need to swim with an anchor, eh?! Boom, Boom!

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Photo: Ramin and his Dad, Riaz (taken September 2012) in Denia, Spain.

Reference:  Teach yourself NLP, Steven Bavister and Amanda Vickers.

Toilets vs Aliens

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Ramin’s perspective:

Since I  joined the UK MS Society, I received two cards which I find really helpful and supportive. One states in four languages (English, French, Spanish and German) on the one side,

‘I have MS and would really appreciate your help. Please don’t worry, MS is not infectious’.

On the other side it states;

Because I have MS, I need to use the toilet urgently. Can you help? Thank you.

The second card states on one side;

 ‘I have Multiple Sclerosis. 

It is not infectious. 

I need assistance and would be grateful if you could help me.’ 

 and on the other (the first three are true for me);

 ‘I need to use the toilet urgently.

I have fatigue and need to sit down or rest.

I am unsteady on my feet.

I have difficulties with my speech.

I have difficulties with my eye sight.

I have limited movement in my limbs’

We shop in Sainsbury’s near our home, but I am more inclined to shop in Aldi because it’s cheaper, it reminds me of Germany (more or less the same lay-out)  and there are not so many options making everything easier to find, but the downfall is there’s no toilet. I always have to go to the toilet every 30 minutes and this makes me really sad. It feels like a shackle.

The cards from the MS Society help others to recognise my needs because its an official print by a society that everyone knows. They make me feel more secure about asking for the toilet, even if I don’t yet need to show them to anyone. I’ve used toilets in all sorts of places, for example; hair-dressers, pubs and shops where the toilet is usually only for the staff.

I was also given a special large key, which opens every disabled toilet all over the UK. I didn’t believe it at first, so I’ve tested this far and wide and it’s true! We got this key from a neighbour who’s husband is disabled. You can buy one from here: Radar key. 

So back to shopping. Fleur gives me a shopping list. The first thing I have to make sure of  (if I don’t know the shop very well) is to find out where the toilets are, go one time for luck, and then start shopping. I am quite tempted to always ask where things are, but these days I try to look myself and if it seems like there’s no possibility, I’ll ask. In our local supermarket is an assistant who knows the shop like the back of his hand. I found out the other day when I asked for help that he is partially deaf and it made me chuckle – there we were, two disabled people trying to get something done. I was impressed that he, with all the vigour and positivity, went for that job and is really good at it.

When shopping It’s difficult for me to locate where certain products are. Something that doesn’t help is when the stock has moved. I have a theory that this occurence happens fortnightly BY ALIENS just to test my patience and other human virtues that they want to learn about more. Every time Fleur asks me to go shopping by myself my heart drops because it’s a challenge for me. But I’m willing to go because this is a way to meet people as I’m a very chatty person and love to be with others. I go there, I buy things, some of them are wrong, I return them, I sometimes still get the wrong things and my argument is, ‘because it was cheaper!’ Back home, Fleur smiles at me, gives me a kiss on the cheek and pats my arm saying ‘It’s alright love. You got most things I asked for!’.

Which way – this way, that way?

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Ramin and I tend to either decide on something immediately or take quite a while to make a decision. There’s not really an in-between.  My mind is thinking of that moment as well as later that day, the next day, appointments that are coming up in the next week and often what’s coming up in the following month.  Ramin tends to live in the moment so completely that he can find it challenging to think beyond what is happening right now. This could just be our personalities, but it could also be that MS is intervening, yet again invisibly but very much there.

My Mum made a good observation the other day, she noticed that Ramin tends to wait for me to ask him to do something, or asks where we are going and when. I’m the one who carries around the week’s schedule in my head and he is happy to rely on my memory for the organization of his week, of our week. In itself it’s not too bad as our lives are not particularly complicated, but it does mean that he isn’t engaging his own memory, is reliant on me and floats from one event to the other without much reflection. How wonderful to trust someone so much! Ah, but this has to change. Yes I am Ramin’s carer, but in this role as well as helping him with the every day things that would be too hard for him, I also want to assist him to progress in his life, not to keep him reliant on me for every little thing, all the time, everywhere. Mum suggested that we write the events of the week down in a little book – not a diary (He has one of those already and either never remembers to look in it or there’s too much space in-between events) – but a little book so that when he’s not sure about the week’s plans, he can look in the book and remind himself without always asking me – crossing off events when they’re complete. I love this idea!

The Oxford Dictionary definition of independence (as it relates to a person) is: ‘adjective: ‘free from outside control’…’capable of thinking or acting for oneself’…’not influenced by others’…’not depending on something else for strength or effectiveness’.

If the opposite of the definition of independence is true for him then he would be controlled by me, I would think for him, I would  influence him and he would depend on me for strength or effectiveness. At the moment, to some degree, all those things  are true – he kind of likes it that way to be honest as it removes responsibility from his actions – and he knows I have a clear head and can make good decisions. Also in marriage being interdependent is healthy and good! When I go to the dentist I totally rely on his calm strength to be able to face the scary-ness!

However a marriage is a union of two people, through which they both grow and learn together. As his wife I  want him to be someone I can rely on. I want to have a great life together! I want him to fly. I want to fly with him! If one person is making all the decisions and the other is relying on that person and not thinking for themselves, then how can either of them grow? How can I grow as a wife if my husband just agrees with my ideas of where to go, what to do, what to eat, what to buy, how to serve, who to visit and so on? It’s like being alone with a lovely pet dog who loves you and follows you around and is sad when you leave. Sorry, but this is true! How can Ramin grow as a husband if he doesn’t think about his life, ponder on his actions, reflect on  his love for me and ways to grow together or even just think for himself about his diet, exercise, friends, service, prayers and so on without my prompting? In fact it’s not only the marriage that suffers if one person isn’t independent, but that person’s whole life! I don’t want Ramin to become me, for Pete’s sake!

Ramin is a wonderful man with an excellent University degree in film (Aberystwyth), strong personal opinions (when he feels he wants to express them), a fantastic personality full of joy, calm and love for people and someone who needs to have the space and encouragement to just be himself. MS took all his abilities away for many years and I feel he lost a sense of trust in his mind and his body in that time. Now, with almost all his abilities functioning really well, he needs to discover his self-trust again and not let those years of illness rob him of a meaningful and independent life. You see how  you can choose to let MS have a huge, looming role in your life, or how it can be pushed away and play no part?

So therefore sometimes our decisions are quick and easy – either when we both agree straightway to do something (eat pizza, go for a walk, watch this movie, ring his Dad) or take a lot of time and space when it’s clear to me that I need to step back and let Ramin find his voice. Yes I can get frustrated and in my head my voice is saying ‘hurry up!!!’ but expressing this just kills any chance Ramin had to think and use his voice. For example, it took us two weeks to decide that we wouldn’t continue the fertility treatment and would start the adoption process. He wanted me to make the decision and I refused to do so by myself. I waited until he had really thought about it. We also consulted with our family members and prayed a lot.

Perhaps I need to employ this method more in our lives, not just about the big decisions but also about what to do and where to go – to give him a real sense of us deciding together. Man, I’m going to need some patience from the Divine! So maybe that’s my disability right there, I’ve learned to be the strong one and now I need to learn to step back. You can see this in the way we walk down the street, I’m always walking ahead while he follows behind. I then stop and wait, realising I’m walking too fast. Then we walk together, holding hands, making eye contact while I pull back my desire to strive ahead faster and he pulls back his desire to follow and not think much.

Perhaps he’s my hermit crab and I’m the shell he hides away in. He’s protected by his trust in me, his love for me and a regular routine – and when he feels safe, and the way is clear he’s able to pop his head out of the shell and feel the waters ahead with tentative thought tentacles – and that’s when I need to sit quiet and let him take us both forward, knowing it’s the experience of moving forward that’s important, not really if we’re going this way or that way.