The real reason I talked about it…

For me, there are two main sources of joy and happiness. The first is when good things happen – anticipated or not. The second is when bad things stop happening.

Yesterday I woke up in raptures. It was an advanced case of happiness of that second kind. I am still in the grip of a happy glow. I think I will be for a while. For the last six years or so I’ve shared my life with a very demanding health issue. The last two, thankfully, have seen normal health service returning gently. Because this came on gradually and has been abating gradually, I can’t stand in the town square and declare a healing. But I can say that I have consistently in the past few weeks lived a life at a pace that would have been impossible a couple of years ago – and would have required complex maths type planning even in the last few months – to ensure that I was able to keep the show on the road.

The reason for lettersforladyn is to chart the prose side of the process of writing the poetry. I’ve written fairly consistently, though in the worst times I didn’t have the physical strength to edit (was anyone aware that editing required any kind of physical strength??).

The words have strayed consistently to a place between calendar time and the schedule of growing things. The words have led me to explore how I/we construct a world where we are confident that we will keep breathing and that everything will still be okay when we stop.

But this post isn’t about that.

Yesterday I woke in raptures. But the one bittersweet thing for me is that I am celebrating what is the most amazing thing pretty much on my own. I want, before I go on, to say a clear word of thanks to those who shared any part of this ‘journey’ with me and those who put up with limited-friend service for an extended period of time. I’ve learned a lot from being on this side of the conversation – things that I couldn’t have known when I was on the other.

I have talked a lot about ‘it’. Like many people with illnesses that outstay their welcome, I got the feeling that I was often in TMI territory even with my nearest and dearest. But I continued to talk a lot about ‘it’ and am likely to continue to talk about ‘it’ – and the purpose of this blog is to record why.

The reasons I talked about ‘it’ have changed over time – so this list is, sort of, chronological:

  • I talked about it because I needed help or support; sometimes urgently – and heartfelt thanks to those who responded.
  • I talked about it because I was desperate to make contact with anybody who could help put a language on what was going on for me. It was a worthwhile exercise, though slow, I got the recommendation of a book, the phrase ‘Don’t run your blood to water‘ (though my blood was pretty thin when I came across it  – and it’s not a medical description – it is the best definition of what happened I have), the counsel that patience would be necessary as this wouldn’t pass over quickly (or without changes), and a doctor who patiently worked on the individual symptoms.
  • I talked about it to help those who were used to my being always well and reasonably available to understand that my absence was not about them. In the very early days I was frustrated and heartbroken at not being able to do things, but quickly began to live a dual life that moved between being terrified out of my wits of the consequences of not carefully budgeting my…energy usage…and a sort of odd bliss when the end of the day came and I had in fact managed to eat, wash, work, keep a roof over my head.  (It may be useful to say here that I have lived my life like most adults, in a state of constant exhaustion, but thin-blood exhaustion is different. The general rule of thumb is if you were exhausted and you kept going, the good news is that this is normal. However, if you lay out flat, or were, over an extended period of time, only able to hold yourself in an upright period for short periods of time then you probably don’t need to be reading this as you already know what the story is).
  • Because I had no frame of reference for this thin-blood situation, my body was sending very useful signals that my mind/imagination – already under siege by virtue of a host of stressful external situations that were the prompt for all this – went into overdrive to translate. To say that my mental health was affected is a mild way of putting it. I was, in humorous terms, often close to a home for the bewildered. The best treatment I received was in the mind / body impact training department. However, I did not talk about it to break down the taboo about mental illness (although if that has been an affect – wonderful!)
  • I talked about ‘it’ because the mind and the body, it appears, are very intimately connected and an inadequate diet in the food, vitamin etc AND thinking department are necessary. I came to appreciate this ill-health condition, such as it is, as something of the whole-self and I wanted to remind people of what we learned as children, that keeping yourself adequately fed requires vigilance on a variety of fronts and won’t be cured only by changing what you put into your mind.
  • I talked about ‘it’ because learning how to deal with stressful situations is part of what we need to learn about human beings – even too-many-good-things needs it’s own preventative toolkit of blood feeding strategies. I know I was coming from the worst scenario position but the truth is that everyone is susceptible to stressful situations.
  • I talked about ‘it’ because I now know that it is recognisable in the early stages if you know what you are looking at. We are pretty handy at knowing when we or our loved ones are coming down with a cold, or stomach bug – because we have experience of this – and I hoped that by talking about my situation, it would add to a sort of collective understanding of not forgetting what our parents taught us at exam time  (doing the best you can, sleep, fresh air, exercise, a calm confident attitude, good friends, learning to take the long road around anybody who appears to think you are superwo/man – you know this already). I talked about ‘it’ because I know – in the worst way – that this advice is still good. Even adults in their middle years, who believe that they are responsible for holding the world upright, are not exempt from taking it.
  • But those weren’t the REAL reason that I talked about ‘it’.

Yesterday, I woke up close to euphoric. For the first time in a number of years, I lived in a way that I consider, not so much normal, as desirable. I made full use of my time, and I enjoyed what I did without counting the energy-version of calories. I got up today and I did the same. I feel confident that tomorrow may also be like this.

Of course, I talked about this new and wonderful aspect of ‘it’ but I suspect you’ve worked out that as I am writing this, I am not with loved one/s celebrating.

So now I reveal the REAL reason I talked about ‘it’.

I talked about ‘it’ – for the exact same reason that I talk about anything that is real for me – so you (whoever you were) could know who I am, for the purposes of relating, for sharing. I understand that ‘it’ is an odd sort of gift, and it may be a while before I wax lyrical about all the fabulous things I learned – but, actually, I made a few mighty discoveries and – like all the best sunsets and sunrises – such things are improved with good company, in my opinion.

I wrote this poem c.2012. I had forgotten about it. But yesterday afternoon I remembered it.

A Phoenix Longing

You say you remember it clear as day

how I came back – the flames –

and how I’d been so unbelievably low

I ask whether you also

remember the intense heat,

that heat that had begun to burn

my fair skin long before anybody

else had noticed. The final stages

of disintegration were, of course,

most noticeable but you say

it’s better not to focus on that now.


The thing about being a firebird

is that our speciality is this kind of coming

back from beyond the brink

and it is a big thing, quite unique,

and then there’s all that happens

after we are back brighter and

that whole returning thing is quite

a process. And what I wanted to say

is that you were in no personal danger

and I’d like to have had your company

while I was waiting in the dying embers.

Maybe next time.

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