"I'm so terribly sorry I think I may have to be taken to hospital ..."

Life has been busy. Despite a wonderful autumn holiday, I have been a bit stressed and also, well let's just say sad of late. Being a woman in my late 40s (I don't think I like writing that very much!) I'm also facing a problem of irregular sleeping patterns - many women experience this as the menopause begins.

On Tuesday evening nearly a fortnight ago we had as ever a wonderful encounter at our feminist theology group led by Anne Claire Rivolet. I was terribly tired and hadn't eaten anything much all day (anyone who knows me will know how rare that is!) until I got to feast upon a slice of Cornelia's delicious pecan and chocolate cake. (Cornelia provides tea, coffee and edibles to start our evenings.) The evening went well - as almost always - and there were nearly 20 of us there. I was very tired though - I had been interpreting non-stop all morning and been up late.

As we spoke about living in God's present, the session was also quite emotionally charged - at least for me.
Then while standing around chatting after most people had left I suddenly found myself saying to the person opposite me "I'm terribly sorry I think I'm having a stroke. Maybe I should go to hospital." I had suddenly found my tongue and lips not doing what I wanted - as if they had gone to the dentist. I was quite frightened - except that I was also quite calm, I wasn't at all sure whether actual words would come out of my mouth and be understandable.

And then after about 45 seconds, maybe a bit longer I was fine again and didn't need to go to hospital. But it was all a bit of a shock.

I'm so used to living in denial where my MS is concerned that I am not prepared for its more strange manifestations. The last time something like this happened to me was about 4 years ago when my left hand stopped working for about 30 seconds.

After we had all calmed down, one of the women said to me laughing "You know I think I'm always going to remember you apologizing for disturbing things by maybe needing to go to hospital for something serious." Oh dear ...

Anyway thanks to all who looked after me and drove me home. Afterwards I had something to eat, went to bed, slept and was up and well the next day.

So I give thanks.

Meanwhile a colleague who travelling in September was not so fortunate and is still receiving care for the stroke she suffered while in Scotland. Lois you are in our prayers, may your recovery be full and may all be well, especially now you are finally back in the US and closer to friends and family.

on blogging and generosity and all that

Apologies for my repeated absence from blogging here over the past month. Let's just say life has been complex and rather busy and I gave my "élan" (what a lovely French word that is and how I hate to have to try and translate it) to other work. It has also been very hot and for anyone with MS this means you get a bit slow now and again.

Meanwhile I have finally found a bit of time to get back to reading other blogs - for a while I thought that everyone I enjoyed reading seemed to have given up on blogging. Fortunately J.K. Gayle hasn't stopped but seems to have become a multiple personality with several blogs including Mind your language. Not sure I shall have time to read everything but I'm relieved he's still out there giving me ideas about what I should read. Over on Facebook he's also encouraging folk to donate blood to the local blood bank. Obviously a multilayered, engaged, intellectual sort of guy who loves his family and friends. If it weren't for blogging I wouldn't know he existed.

Today I've been reading reviews of Clay Shirky's book Cognitive surplus: Creativity and generosity in a connected age. Charles Leadbeater's review in the New Statesmen ends:

The web still has vast untapped civic potential. But that potential will be snuffed out unless we stand up for a free, public, open web against the encroachments of companies and governments. Cognitive Surplus tells us why that battle is worth fighting.

I love the way his review begins with Songs of Praise and moves through his son teaching him something he's just learned from the internet.

One of the reasons I like blogging and tweeting etc. is that there is an enormous amount of generosity in the systems, the fabulous amount of information and opinion out there. It's fun simply to be part of it, maybe it just gives me the illusion of being part of something - and it's interesting I notice even just typing this - blogging make me happy - I've been depriving myself of that in recent weeks and it hasn't been good for me. Perhaps it's like that for loads of other folk out there too - blogging facebooking and all the rest of it unleashes a little bit of our creativity and gives us an outlet for musings and humour.

Anyway more passing thoughts from me soon as I get back to finding my voice.

If the entry point is the top of the head where is the exit point

I said I would write a little more about our feminist theology group with Anne Ramoni last week but I've been hesitating about doing so because of a particular word and because some things are quite personal (oh dear me I do sound terribly English don't I!). Anyway I've decided to give it a go and to try to find the right tone for writing about this. And as I do that I can't help noticing how the act of writing makes me more reflective, Dr B would say more angelic ("fools rush in where angels fear to tread"). In speech I am rather (too - pace Dr B) raunchy and impulsive on occasions - I find it hard to leave a good line unsaid - in writing I am for the most part slightly better behaved.

First of all here again is what I wrote following Anne Ramoni's invitation to each of us to write something we felt strongly about concerning voice and words and then say it aloud, first seated and then standing:

Hors du silence la passion de la parole et de la voix est en moi;
elle monte en moi;
elle me motive;
elle me met en route;
elle me soutient ...

Out of silence, passion for the word and for avoice is in me
it rises within me
it motivates me
it sets me on my way
it supports me ...

(How wonderful that in French passion is she and not that boring English "it")

I said my phrase sitting down and said it powerfully. It was true and "me" as Ria commented at the time, strangely when I later stood to say the same phrase, it was very different and the energy was different too. I was too much the professional pastor, very "in role" - and this was completely the opposite for nearly all the others who grew in confidence and voice when they stood to speak. I admitted that I am better walking and speaking and loved the way Anne described the voice as something fluid and in movement.
Anne got me to try and talk about where the energy was when I was speaking the first time - sitting in my comfy chair and I said that that I felt the energy was going straight through me from top to bottom. "Where to where?" she asked, "where does the energy begin?" "At the top of my head", I answered "And where does it come out" she pursued. I did pause but then I said what I realised was the truth "du vagin - from the vagina". Anne was writing all of this on the flip chart and because she also trained as a nurse asked whether the word perineum would be a correct description but I decided to stick with what I first said and then, after some considerable laughter, told this story of my first multiple sclerosis attack.

My first MS attack gradually rose and rose over several days from the tips of toes up my legs and stopped just above my pubic bone. It was not a pleasant sensation - I was still able to move my legs but I remember saying to my neurologist that I felt I had lost sensuality of feeling. My pubis and legs felt as if they had been to the dentist and were not recovering from the injection. My voice broke slightly as I said with some feeling that to be able to name and feel the place where the energy of my voice had part of its plumbline within me was both a liberation and also a reason for thankfulness that I was able to "feel" and "sense" that part of my body, that it's sensuality had returned.

Nearly a week later as I mull over this I think about how voice and the voice is part of the body, about how we give birth to words as physical things almost. For someone like me who has no children my speaking and writing are part of what I sow - the "way" I have taken has been a childless way perhaps because of the "voice" I have found and because of the voices I have chosen not to listen to.
I also wonder whether it is easier for women to have this kind of earthy bodily conversation than for men. I hope not. Yet I also wonder how I would respond to a man saying something similar about the energy of the word within him. There is perceived to be a completely different power dynamic around male and female sexual organs and yet ... surely our sexual identity has to be part of the energy of the word that is within us and which we seek to give voice to: falteringly and coherently, stumblingly and beautifully, hesitatingly and flawlessly, in womanly and manly ways, sensually ... ahhh the sensual word.
May we all find plumb lines of energy we can rely on, allowing us to speak and stay silent in right measure, finding our voice and finding our way. Anne reminded us that each of voices is unique.

A month is no time at all ...

A month ago yesterday Dr B was taken to hospital. It's been a long time since then and it's been no time at all. He is still gradually getting better but he won't be back at work just yet. We'll just have to see how it goes.
A month seems like such a long time when you're thinking about holidays or deadlines but it's no time at all when you're involved in the full time occupation of trying to get better. Things take time to heal.
I'm not very good at being the carer, so it's just as well my patient is fairly self-sufficient and able to look after himself. Even if at the moment this still mainly involves him ruling the world from the sofa with his Nokia! Having my partner sick has also made me realise just how much he normally does for me in all sorts of little ways - like making early morning tea and dealing with my computer problems and carrying more than the fair share of the shopping home. I've learnt I can still do all of that myself and that we can organize our lives differently. But over these past weeks I've also realised that one of the subtexts to how we have come to interact over the past ten years has been that I'm the one who deserves a bit more concern or consideration because of my MS. It's easy to lazily slip into the role of the one who is a bit more "in need", to assume that the other one will be there solid as a rock. Now I know very differently. I also know that bearing the concern and worry of being the "carer" has certainly not been easy on him all this time.
Really though I have no great insights as a result of the dramatic health emergency we lived through, other than total, tearful thankfulness. I feel lucky and grateful and very, very emotional. A month really is no time at all to deal with all those powerful emotions, maybe sometime later in the year I'll start coming up for air.

2010 is the UN year of biodiversity

I suppose my new year's resolution should really be learning how to deal with photos and images I want to put on my blog. The logo above would be better a bit bigger. Anyway big is not always beautiful, the message of the UN year of biodiversity is that the planet's diversity is beautiful.
You can access some great educational material on biodiversity and also visit other resources on the biodiversity is life site. It's a way of moving 2009's 150th anniversary of the publication of Darwin's Origin of the Species forwards.

At work we are in the process of preparing an issue of Ecumenical Review on the Greening of the Church, following on from Copenhagen and the previous 20 years of campainging on issues related to creation. This sets me wondering what thinking about biodiversity might have to offer our thinking on ecumenism. That will have to be for another post.

2010 is also the international year for the rapprochement of cultures, about which you can read more on the wonderful UNESCO website.

But what will 2010 be the year of for me? Well 2010 marks me entering my second decade of living with MS. And given that the latest terrorist attempt on a transatlantic plane tried to use a syringe as a trigger, I imagine that 2010 will be the year when I try to avoid travelling by air if at all possible. My syringes can't go in the hold - they break in the cold - and trying to get them throught security is always interesting. We'll see how things go.

What will 2010 be the year of for you?

10 years ago and a strange tingling feeling ...

Yesterday for various reasons I will not bore you with I spent alot of time waiting for and seeing health care professionals - I was not in a very good way by the end of the day but at leaset I had managed to get vaccinated aginst H1N1 and got some decent painkillers for the split tumour (benign, panic not!) in my mouth. Surgery in 17 days and counting.
Thinking about my brother campaigning in Paris for HIV/AIDS and my colleagues at work and the WHO campaigning for access to drugs and against stigmatisation, I realised just how much I have to give thanks for in terms of my own health care.
Ten years ago on December 1st Dr B and I were in London. We spent nearly the whole day at John Lewis in Oxford Street, finally choosing two sofas and the material to cover them in - this was the end of a 7 year search for the right sofa. Five months later they arrived in Ferney and I remember heaving a sigh of relief - phew they are not hideous. (10 years on they are however looking a bit worn.)
Later on that December 1st evening as I was putting on my tights prior to going out with friends I noticed a strange tingling feeling on the sole's of both my feet. Everything seemed to be working all right and wasn't painful, so only about 5 days later when the tingling had reached my knees did I actually make it to the doctors. By the time I got to see a neurologist the tingling had reached my pubic bone. Everything was still working fine and I set off for a meeting in Paris before going into hospital on the Monday. That of course was when I started to feel ill, a lumbar puncture, MRI scan and mega doses of intravenous cortisone all saw to that.
My parishioners came to visit me and I had to try an politely get them to leave so that I could get a few moments with Stephen and tell him about the probable diagnosis. La sclérose en plaques, lesions in the myelin protecting the brain and spinal column which get inflamed and put pressure on the brain, the nerves and muscular functioning ... speech and sight sometimes too, and of course bladder and bowel control ...
Ah yes and if you have an MS episode the headaches are really utterly, spectacularly horrible.
On a cortisone high I took the Christmas festival service and then collapsed. That was the year Dr B cooked Christmas dinner for the first time and we cancelled our millenium trip to Paris. I could not sit up let alone dance! The plus side to being in this state was being able to take opiates which killed the pain but made me feel even worse.
It all sounds quite dramatic and it wasn't alot of fun but actually I have so far been extremely lucky, my form of the illness is relatively benign. When I had my second episode 18 months later I got speedy treatment and encouragement to take the new interferon B treatment - if I had been in Britain at that point I would have had to do battle to get access to those drugs.
So there we go. Perhaps now, ten years on I should at last start looking after myself ... that really would be a challenge.

Speaking personally is not that easy ...

I'm never terribly sure how much to share of a personal nature on my blog. I notice as I try to write more or less every day that I hide sometimes behind my writing. I may seem to say something about my life but in some ways I reveal very little about the daily Angst that it is to be me. (My close friends know there's quite alot of that Angst around even if there is also alot of laughter as in my blog's title!) Anyway this post has been a while in preparation and I'm still not sure about it but hey, it's only blogging ...
A few months ago David Ker wrote openly and straightforwardly about living with and through depression. In a comment on that post I wrote:

... I had been thinking that I would write a bit more about what my anti MS drugs do to me psychologically - and physically. Your post encourages me to try to write more personally at some point.
The stresses and strains of daily life and work affect us each differently - and differently at different stages of our life. We are so beautifully and wonderfully knit together as Psalm 139 has it, yet each of us is also a delicate, intricate, fragile balance. My whole life I have tended to live in a way which takes my health more or less for granted and although I listen a great deal to others, it took me a long time to learn to talk about myself or even names my desires, fears and angst.
Thank God for mental health professionals.
I have no cure but do find great solace and respite - healing of a kind - in corporate prayer, in worship that moves me, in biblical surprises.
Ah yes and in reading detective fiction - my mental balance tends to start going skewy (is that a word?) if I’m not reading a crime novel.

This week Suzanne McCarthy has also written more personally on her brilliant and erudite blog on biblical translation.
So do I dare to speak for myself? Hmmm ... I'm not sure. From the outset I decided that I would be open about having MS on my blog sidebar, it doesn't define me but it is part of what I live with. I do feel a bit of a fraud when people offer me sympathy as a result of reading that, or when people think I have some special wisdom because I live with a chronic condition.
Taking the interferon b keeps me on my feet and means I'm able to work and live like others (not I don't say normally, but then I've never really lived "normally"). The drug costs not quite 1000 euros a month and when I first went on the medication that was more than my monthly take home pay. The wonderful French health service pays it all and also 100% of anything else linked to my MS. Both MS and interferon can have depressive side effects, suicidal feelings. In addition on the three nights a week when I take the drug I can get a bit raving, particularly if I don't take a good 1000mg of paracetemal to stop the flu like shakes that come in about 2 hours after the injection.
I suppose in all sorts of ways I feel extremely lucky, even when angst-ridden. My MS does sap my energy but it also gives me a certain strength and determination, and it has taught me alot about living with pain and discomfort - unfortunately it can also sometimes make me even more judgemental of other people, but perhaps that's just my Calvinist nature anyway! ;-) Of course when I have an episode I do also get panicky, tearful and scared.
I suppose the real truth about my life is that it is not my MS but much more being so overweight that has a day to day impact on my happiness and well-being. As I say, speaking personally is not easy and I'm well out of my comfort zone writing that. I'm passionate about life and I live it, quite possibly I shall leave life rather earlier than many but I do hope I shall have lived. I shall have borne imperfect witness to much of what I believe in but I hope I will have shared some joy and experience.
While I was interpreting at the Calvin event last weekend I was deeply moved by some of the comments and discussions about Calvin and the sanctification of everyday life. It spoke to me - as part of my Reformed heritage I suppose. I realised that all any of us can hope to do is to lead ordinary extraordinary lives. The everyday is holy, it's where you meet people and it is where God meets you, it's in the everyday that transformation takes place and the gospel may be heard.
Hmm ... I fear I may think I'm writing a sermon - I did say speaking personally is not easy for me! I suppose I could say this - not being perfect, being aware of my responsibilities and limitations, always thinking about what I have not done ... weighs heavily on my mind and body, however, I do also have a great capacity to enjoy life.
My main problem tonight - I haven't got a crime novel to read!

When you hear about a new wonder drug read the small print

So a potential new MS drug called Campath made the headlines this week and lots of friends and family talked to me about it. It's great to know people are thinking of you when they hear news of this kind. Interesting that it is often potential medical breakthroughs that are the "good news" stories in the media. Until being directly concerned I'd never thought much about this.
This week I was a bit shocked to discover that this potential new wonder drug which could perhaps reverse my symptoms, can also have very serious side effects -like a very increased likelihood of developing a serious thyroid disorder or "a rare blood condition called immune thrombocytopenic purpura (ITP) that can lead to abnormal bleeding and even death. Six patients on Campath developed ITP during the trial, and one [of the 364] died."
Hmm ... so we're not quite there yet, although this new drug does promise great results for some people the real truth is that probably no drug will be a magic wand. People living with chronic illness and disease in countries with good health care systems are often faced with difficult decisions about their treatment and it's not easy stepping through the minefield of medical information. What would you do with odds of a 1 in 300 chance of death if there was also a 1 in 2 chance of you being able to walk normally again, and then balance that together with a 1 in 5 chance of developing the blood disorder and wondering whether living with MS is more bearable than that?
So behind the good news of brilliant medical advances, is the hard truth that most of us with the illness will continue with our current treatment and wait and see what happens next and what decisions our doctors will face us with. Writing this I realise what a huge privilege it is to benefit from the medecine I currently get. Perhaps I should direct some of the extra years of better health it gives me to campaigning for those who have no access to decent health care and medication.

Is paracetamol a sign of the Kingdom?

Three times a week I inject a horribly expensive drug called interferon b. When I first started taking it the cost of the drug was a lot more than my then monthly salary. Since then the cost of the drug has come down - and my monthly salary has also increased. However, I have never had to pay for my drugs because I live in a country with excellent access to care and medicines and I have good insurance.
The drug keeps me well and the paracetamol keeps me sane by calming the side effects of the interferon b (crazy raving flu-like symptoms at about 3am). Simple pain and fever relief. Often in the mornings I have paracetemol to thanks for a relatively good night's sleep. I give thanks to God for that and for the privilege of access to good medical care. I know (sort of) that I am worth it. But I believe passionately that all God's children should have equal access to the care and treatment they need. So I give thanks also for the work of the Ecumenical Pharmaceutical Network in all it tries to do for God's kingdom.

MS awareness from 14th to 27th April

The MS Trust begins two weeks of raising awareness about multiple sclerosis - in French the abbreviation for MS is SEP for sclérose en plaques.
Much as I applaud the work of the trust I don't think I'll be doing this over the next few days:
One of the highlights for MS Awareness 2008 will be our abseil down Millers Dale Viaduct in Derbyshire!
Hmm ... maybe not. But the trust describes itself as the definitive source of information for people living and working with MS and the website is a good place for people in the UK needing information on the illness and its treatment.

Surtout la santé

Athe beginning of each new year people offer one another best wishes for the year ahead and many in France will often say "et surtout la santé" - which means "and good health above all else". One of my parishioners would regularly say this to me and I have to admit it used to irritate me more than rather. (I think my ungraciousness may have had something to do with her having chopped down my carefully planted gooseberry bushes, but I digress.)
Tomorrow is World Health Day marking the founding of the World Health Organization and an invitation to reflect on global health issues.
But as well as being a subject for national and international policies, global campaigns and constant raising of awareness, health is also very much about individuals and communities. Health is personal and like much of what is personal, it's also highly political.
A friend who has spent part of recent months trying to work through some of the physical and psychological issues around her surgery gave me The Wounded Storyteller by Arthur Frank. I'm enjoying beginnning to read it and will also look at some of Frank's other work.
It's good for me to reflect on what illness may mean for me personally, and also on how I tell my story and help encourage others to tell their story. It is easier to overcome pain and chronic illness when you know that you can get the care you need if there is a crisis.
One of the global aspects to health issues is that so many stories remain untold. With health the focus in the media is often on fabulous new drugs and technology rather than on community empowerment and appropriate technology. The push to privatise and commercialise health means that many people in developing countries aren't always able to become wounded storytellers, and thus subjects of their own health rather than objects of someone else's health programme.
So World Health Day for me will be an opportunity to give thanks for the great drugs and care I receive and for the opportunity to become a wounded storyteller in my own right. I am a very privileged person.

Not the mystery of suffering

I don't believe in the mystery of suffering. I do believe in raging and campaigning against suffering; listening and simply being with those who are suffering - when and if that's possible. Talk about the "mystery" of suffering often belies some strange religious idea that suffering is good for us, redemptive or "God's megaphone to rouse a deaf world".
Life without suffering is not possible, nor is it life. Of course we search for reasons when difficult or even terrible things happen, but imbuing those things with dubious religious meaning doesn't do humanity much good.
These reflections come courtesy of my wintertime tonsilitus, which was painful and left me rather delirious with fever for a while and worried for a while longer. For people with MS, fever and viral overload increase the risk of the scar tissue (or plaques) in the brain or spinal cord inflaming to cause (in my case) some temporary paralysis. The most difficult part of this for me is learning to be a little bit good and accept it wouldn't be a good idea to go and see another several hundred people in the freezing cold tonight. So far no problems - phew. However, dealing with these issues does not make more holy, nor give me a more direct line to God. And when I'm in pain it's not been redemptive so far - more likely to be peppered with rather more tears and swearing than usual.
Meanwhile in many, many parts of the world far too many people don't even have access to paracetemal or asprin to calm ordinary aches and pains, let alone clean water to take decent, free medecine with. Surely their unnecessary suffering calls us to act for more justice, more equity and more sharing and not to meditate a dubious mystery. Something to ponder and act on in the new year maybe.