Sunday, May 11, 2008

Coming of Age

I have had M.E. for twenty one years. So it is perhaps particularly appropriate for me to write something to mark M.E./CFS International Awareness Day. You could say that we have now come of age, M.E. and I together. I do not feel like celebrating. But still, it is something perhaps worth honouring – the fact that I and so many others like me carry on and live our lives, that we are, in spite of everything that the illness brings with it, alive. What does this mean to be alive when so much of life has been compromised or brought to a standstill? I am, it should be said, one of the lucky ones. I can walk a bit, write and read a bit, travel a bit and am not wholly confined to bed or wheelchair. I would like on this day to honour those, especially any who might be reading this now, for whom life has become a very small space in which to live and have one’s being.

Recently we have read or heard on the news the terrible things that happened to a woman living in Austria, locked up in a cellar by her father for many years, forced to bear his children, some of whom never saw daylight. We heard last year of the imprisonment of Natascha Kampusch, now free after ten years confined to a small space. I am not intending to compare my situation with theirs. The reason I mention them in this context is that I am always freshly astonished at the capacity that people have to survive, not just in body but in soul – particularly that. When one interviewer suggested to Ms Kampusch that she couldn’t have had any life at all, she had to explain to him that she did of course, but not in the way that others did. Where we have many rooms, she divided her small space up into areas and created for herself an environment, waiting for the time she would be free.

I do not think it likely that I will be free of M.E. I spent years, money, strength, looking for a cure, thinking that one day I would have my life back, hearing about people with Post Viral Fatigue Syndrome who recovered. In early days I did not distinguish between that and M.E. I was unable to read the signs of an increasingly malfunctioning immune system, didn’t know that recovery, as I pictured it, would be unlikely. Perhaps that was just as well because I don’t know how I would have stood it. I have a memory of cycling along a country road in Germany with my baby daughter in a basket at the front, she holding her hand out to feel the wind rush past; another of us in the sea in Hove, me with my small son in my arms, waist-deep, jumping the waves. I already had M.E. at that point but was able on occasions to override it, something which would (I learned over and again) lead to worsening symptoms. Neither children will remember those occasions because they were too young, but those moments are written into me – precious because they were the last moments of their kind. I had to move, as it were, to another country, the land of a particular kind of chronic illness – to learn its ways and find my way around.

There is the temptation to be glib about a life as constrained as ours must be. As everyone (who knows anything at all about M.E.) is aware, one of the strategies we are advised to employ is that of “pacing” ourselves. Perhaps what is imagined is a well-ordered day where life is punctuated by well-timed rests in between bouts of productive activity. The problem is that for many the illness is characterised by lack of rhythm and unpredictability. Even for those who have had M.E. a long time, it is easy to look at others who have it and imagine that they a) somehow manage things much better or b) they don’t have the illness as badly, if at all. It is easily, especially in the blogging world, to misinterpret. To complicate matters, there is wide misunderstanding about what M.E. actually is. People who are going through a temporary bout of post-viral fatigue, or those who are tired and debilitated, announce that they have it and probably actually believe that they do. Then, when they get better, we hear about so-and-so who recovered after a year and there is the implied suggestion that we could too if only we did the right thing or changed our attitude. But the truth that isn’t easily spoken is that M.E., unlike some other fatigue-related illnesses, is not likely to go away. And though there may be improvement, it remains unpredictable and volatile and the falling back after a period of relative wellness is terrible.

And yet the impulse to seize the day is – can be – quite overpowering. For me, at any rate it is so. A day when I am suddenly, inexplicably, without symptoms is as terrifying as it is ecstatic, for I am caught up in a euphoria that won’t be resisted, as though all the life that has been waiting to be lived rushes in to that day, that moment, and clamours for release. No matter that I know how terrible is the comedown one or (at most) two days later, I fall for it. This is the time when one is most likely to do things that bring on bad relapse and commit to impossible projects. This is the time when people look at you and think: surely she can’t really be ill. But I am, and have been, and probably will be.

In this acceptance lies my strength. In this small space I must create a way of living that keeps soul alive and thriving, and I do and will, because life is precious, no less because I am disabled, not on the main road or the fast lane. We all learn this, I think. You could say that it’s a path of initiation. We didn’t choose it but since we are obliged to walk it we learn how to.

Coming of age now, having had this for twenty-one years, I know that there are still no answers. We are moving slowly towards a better understanding; it is possible, or I like to imagine, that by listening to what gives us strength we learn more about what is essential for everyone: that we require food with the life force still in it, that spending long hours under strip lighting or around formaldehyde-treated furnishings makes us ill; that music, art, poetry, kindness, laughter (you can add to this list) are not optional extras but essential; that the heart is not just an organ for pumping blood around our bodies; that even in dark places there is a light in everyone that won’t be extinguished; that this may be something we can believe in.


fluttertongue said...

Signs, you write so powerfully and eloquently. 21 years is a long time. I thought that in six months I'd be used to it - that I'd learn how to manage things and life would be just as full, just in a more organised way. At least that's what they promised at GET camp. Alas, three years and I'm still not used to it.

I will direct people over here to read this as it says so much of worth. Thank you.

Unknown said...

I honour and salute you, Signs, and thank you for an excellent, brilliantly written post. You give more insight in this post than I've had in many years of watching a friend with ME, reading about it, wondering if what I had was ME (and thank god, figuring out it was not, though we have only an inkling of an idea of what it was/is).
Your fortitude, your wisdom and your compassion towards yourself and others suffering from this damnable illness are truly remarkable. You stand as a testimony to the endurance of the human body, mind and soul.
Strength and love to you. And again, thank you.

nmj said...

signs, this is a lovely post.

yes, the truth is ME probably will not go away.

never go away.

and, yes, it is always worrying when misinformation is spread, however benign the intention - although as we well know the intention is often not benign, i will refrain from mentioning the wessley-ites.

this is such a calm post, your blog is always a calm place to be. a bit like a japanese tea garden.

the story of the austrian women and her children was almost unbearable to read.

now i will try & post that lovely yellow badge for tomorrow,i have been trying for many minutes and can't get it to work.


Kahless said...

Signs, yes 21 years is a very long time and your spirit in your soul seems not to be diminished. that is a tribute to you and the light within you.

Reading the Signs said...

Dear Flutter,

We may never get used to it. Part of me will always be waiting, hoping for the moment that I can pick up my bed and walk. I think, strangely, that it is possible for this and acceptance to co-exist.
Thank you.

Dear (whence is that goodly fragrance?) Vanilla,

Strength and love to you too, blogfriend, and congrats again. I know you have your own particular darkness to contend with, in the place where you live.

Dear NMJ,

Oh blimey darlin - a Japanese tea garden? How delicious, and I would like some right now. Got some Jasmine stashed somewhere I think, that'll have to do.
Thank you.

Dear Kahless,

I think you also have occasion to look back and see what you have come through. I think the light is there, even when it seems to be obscured. I hope you feel that, with all the challenges you have right now.

Cusp said...

Ah dear Signs.
'Happy Birthday'....

21 years is a long time to be caught in this morass and I too salute you for maintaining such a calm exterior.

I found the memories of better times with your children when they were small very touching --- touched a raw nerve. Everyones' experience of ME is different and parents with ME have a particular viewpoint.

Lovely and informative post

Anonymous said...

A beautiful and moving post. Such eloquence and wisdom.

I wish you didn't HAVE to thrive in the small world but could instead flourish wherever you wished. I'm subdued by the prospect of never regaining my full health but at the same time inspired by your attitude.

Thank you.

Anonymous said...

Your post is poignant...comfort lies in acceptance now. I'm 23+ years into this myself. I hear you. I relate. Thank you & blessed be. Zarii

Reading the Signs said...

Dear Cusp,

My exterior was not quite so calm when I had young children to care for - as you do. There are times when one is almost fragmented beyond endurance. We have to speak about those too, dear soldier.

Dear rachelcreative,

One of the reasons that I say it is a truth not easily spoken is because one doesn't want to dishearten anyone and it is in any case not a truth that is set in stone. It can be almost impossible for some years to know whether one has M.E. or PVS, I think. And there are so many different degrees of illness and wellness.

Thank you again for your efforts in doing this.

Dear Zarii,

23+ years in - yes, I guess there are things I've said that would resonate.

Good to see you here, and blessings also to you.

But Why? said...

21 years?!? That's longer than I've been aware of atomic theory, or the periodicity of the elements.

Your recollections of cycling and swimming with your kids raised a massive lump in my throat: my dad's been variously crippled for as long as I've been alive, but I do have memories of being amazed at his ease of movement in water, his ability to roller skate when my brother and I spent an hour holding onto the sides of the rink, each other, our father's legs, and of bro and I being beaten at badminton, and being at that stage old enough to know that Something Was Wrong When Our Crippled Dad Was Beating Us At Sport. I know my dad treasures them, too.

Happy remembering, and thanks for a superb post.

Reading the Signs said...

Thank you dear Doctor Why , for your comment and recollections about your lovely Dad - almost forgot that you are Doctor Who's sister but then you speak of periodicity of the elements and it all fall into place.

Collin Kelley said...

As alwasy, you are eloquent in the face of adversity. I would have never known you had ME had you not told me. I admire your candor and strength.

Reading the Signs said...

Dear Collin,

Sometimes it does manifest outwardly, the fact of being ill, but on the whole it is an invisible state. On the whole, I am glad about this, the difficulties notwithstanding.

Thank you.

Anonymous said...

Sometimes when I think of my future and wonder how many more years I could keep living like this... It is really a scary thoughts, so I stopped myself from looking at future.

21 years is indeed a very long time to be disabled. But life goes on. As you said, it's just not like the others. :-)

Thanks to RachelCreative, I'm glad I came across to your blog.
I hope you don't mind me adding your blog to my ME/CFS Awareness page.

Rachel M

Anonymous said...

What to say? Bit stumped really, other than, as ever, it's a bloody good piece of writing. And that I'm sorry that things are that hard, and even more sorry that sometimes things are made even harder by other people who can't/won't even try to understand.

Reading the Signs said...

Hi Bluecoffeemug,

- I must just tell you that I once had a blue coffee mug which was my favourite and I would always drink from it. Well your name just brought it vividly to mind.

Thanks for your comments, for adding me and I will be over to have a proper look at your site.

Hello Gael,

Actually things used to be much worse. There is still much misunderstanding but at least the illness is - sort of, well in theory recognised now. And with people who can't or won't understand I do not engage at any significant level.

Your comments about the writing much appreciated.

Pants said...

Hi Signs

Very moving.



Reading the Signs said...

Miss you, Pantaloon -
though I know you are, cyberwise, still there.

Anonymous said...

This is a wonderful post, Ms Signs. I knew nothing of ME prior to chancing upon the wonderful NMJ and you in the past year or so. I still do not know enough, but your post was incredibly insightful and wonderfully engaging. For those of us who are lucky enough not to HAVE to know anything about ME, I am thankful for your words. As I always am.

Reading the Signs said...

And I'm thankful to have this response from you, David - to know that the words find a place with people like you who listen.

Digitalesse said...

Signs, you write so well.

I too hold on to those memories prior to becoming ill, that sense of freedom that has long gone. It's almost as if I had to remind myself that once upon a time, I had a life free from illness and constant exhaustion.

With my ME brain, words scatter and become unruly. I find it difficult to express my thoughts through words. But you do this so well. I feel many people are moved by your writing because you speak for so many who somehow just can't find the words and sentences. Thank you.

Maggie said...

Thank you for a lovely post, even though its subject isn't so lovely! ;-) I am trying to get up enough energy to be taken to the garden centre, but would far rather stay in bed and read the rest of the posts listed on RachelCreative's blog.

All the best from rather grey Liverpool

seahorse said...

I am somewhat behind with things. Like, erm, about a week. But this moved me to tears, of recognition. I have memories of me and a certain five year-old splashing about in the sea and mucking around in playgrounds. Years have passed but those memories are as fresh as yesterday. They are jewels in my mind. I wish I could post. But I can't.

sexy said...