There’s been a lot of chatter in the last few days about the pain suffered by people with Noonan syndrome.  It’s something that has only recently been acknowledged by the medical profession, and a beautiful aspect of the internet is that patients and their parents communicate.  Then, as a force to be reckoned with, we approach our doctors and tell them, and repeat over and over again that so many of them suffer chronic and severe pain that they eventually start looking into it, and even more eventually agree that it is definitely a characteristic of the syndrome.

Theories abound as to its cause.  For years, Tom’s pain was dismissed as growing pains.  If you could see his growth chart you would see quite how laughable this is.  Here is a child who would scream in pain every single night for years and years and years, and yet there is no growth spurt on his chart at all.  Just steady, tremendously slow growth.

After six years of this, I wrote a letter to all the professionals involved in his care, and one doctor responded, getting him referred to the chronic pain team.  His pain has since been managed.  It is far from gone, but thanks to medication and physiotherapy and a lot of pacing, he rarely screams at night.

This got me thinking though… so often when one of our loved ones is ill, or dying, or has died, our first question to the medics is a pleading, “but did he suffer?”.  And reassurance is given and sought in the negative.

I am the mother of a child who does not know a life free from pain.  Pain is simply part and parcel of getting on with moments.  So what of me and what of him?  Do we not then achieve the peace that comes from knowing no pain was felt?

The more I think about this, the less sense it makes.  I’ve been lucky enough to endure a reasonable amount of pain at times in my life.  From the time I was ten, my legs and joints were very painful – I was never without some kind of tubigrip or bandage or pain medication.  I never really though twice about it.  A few years ago I hit crisis point.  I could not walk to the end of our road without pretty much collapsing, and I never achieved deep sleep due to widespread pain.  I was diagnosed with fibromyalgia.

[I’m fairly sure this was misdiagnosed… since cutting out gluten and dairy, nearly all of my symptoms have disappeared – pain free is pretty cool! ]

So…. speaking from the other end, this is what I noticed.

Pain is not a life choice.  It is not something that one willingly enters into.  But at the same time, the endurance of pain is not actually that big a deal.  You do what you can, you take medicines if they help, you manage the pain as best you can, and then you kind of get on with it.  Your life can become very restricted, and that can impact on your mood.  But it truly just … is.  I never felt as though my identity had been taken away, I never felt as though there was no point in anything any longer.  While I am sure some people are pushed to that, I think that those extremes of pain are in a different league, and that more likely is that there is another underlying problem causing that depression.

Pain from the perspective of the person enduring it is no fun.  But it is much easier to endure it than to watch someone you love endure it.

Seeing my loved ones in pain, either physical or emotional is far harder (and dare I say it, more painful) than even the worst day of “fibro” pain I suffered (and there were days I spent constantly in tears because I hurt so much).

I come to think that our desperate plea for our child, our partner, our parents not to be in pain is far more selfish than we think it may be.  The idea of pain is utterly dreadful, and our emotional hurt is something we desperately shy away from.

Little Man comes hand in hand with pain.  And after ten years, I am seemingly quite cold hearted about it.  I still insist he gets up, climbs the stairs and comes down again if he has forgotten his socks in the morning.  Once he has told me two or three times that he hurts, I will ask him not to whine because I cannot take the pain away.  I will administer medication, heat or ice packs and massage, but whining just makes me narky, and that’s no good to anyone.  His pain is physical, and quite, quite horrid, but if I allow myself to hurt emotionally in reaction it will damage my ability to help him as his carer.  It will also give him the message that pain is quite literally dreadful… something to be dreaded.  And if you dread something, your body tenses up.  And that will increase the pain.  So in his case, it’s really a case of tough love, baby!

Sweet Girl and Eldest are much more complex for me.  They experience a great deal of emotional pain.  Anxiety, fear, dread, anger at times, confusion… all of these almost constant emotions lead them to be very fragile, and they just hurt.  Tough love doesn’t help here.

I am trying for myself and for them to learn a little about acceptance.  To embrace the fact that life is not about just happy.  That it is a constant ebb and flow, and emotions and circumstances are all part of that ebb and flow.

Sweet Girl told me last night she was panicking (she is due to board at school and is getting nervous).  My response a few years ago would have been to wrap her into my arms and try to make the panic go away… reason it out of mind.  But last night I told her that it was ok.  That she could just let it happen for a while.  This new situation makes nerves appropriate, and we know that when she is nervous she tends to panic.  So actually, panic was perfectly reasonable.  We focussed on the idea that it would pass.  She wasn’t entirely convinced, but we spoke of listening to a CD or reading an easy book to try and let the panic drain away without being fed by made up worries.  She kissed me and went to bed, and was asleep twenty minutes later.

Eldest is supposed to be at school as I write this.  We haven’t left home yet.  Darling Man has had to take the day off work, because we had fears about Eldest’s aggression.  He’s just scared.  A lot of it is Aspie reactions to transition, and a good deal more is pain that his best friend is no longer there.  And he’s big.  So we’ve restructured our day because it’s the only thing to do.  He is in pain, and I hate it.  Writing this is helping me realise that in a similar way to Little Man’s pain, if I indulge my own pain at seeing him in this state, I am not helping him.

I will allow myself some tears on my way back home later, because tears wash pain away pretty well.  But I’ll also remember that this day, today, was painful, and that’s ok.  It will pass.

Pain just is.  Those who feel it are usually very good at handling it.  We need to accept that if there was pain it was experienced, and that makes up the sum of that person at that moment.  It need not be bad or good, but I think it must be accepted and acknowledged.  After all, if those doctors tell you that your loved one did suffer… what then?  What changes?  Not you, not your loved one, not how much you love them.  But maybe you don’t feel quite so bad… well that’s some kind of anaesthetic, but it’s not real.

Face the real, because however tough it can be, it’s brighter and braver and stronger than any fiction or fantasy.

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