Years ago I read an article about a condition which is
prevalent in parents of severely disabled children, 'Chronic Sorrow Syndrome' ,
which really resonated with me.
Chronic Sorrow is the presence of recurring intense
feelings of grief in the lives of parents or caregivers with children who have
chronic health conditions. It runs alongside your everyday life, you may not be
fully aware it's there a lot of the time. It’s like a virus running alongside a
programme on your computer. It’s each time you have to attend yet another medical appointment,
its each time you watch your child struggle or worse lie in a hospital bed for
days, each time a friends child reaches a milestone your child never will. Its
seeing children the same age as yours in the street and feeling the massive
chest blow of comparison. Its filling in endless forms, its finding more
space in the house for more specialist equipment, its ordering the nutritional
liquid feed which is the only thing keeping your child from starvation,
ordering repeat medication at a rate of knots, homing specialist syringes and
feeding equipment in the kitchen. It's selling your beloved car and
getting a mobility car. It's having tracking hoists running along
your ceilings. It’s looking for a new house when you never want to leave
the place you call home. It's seeing nothing but a black hole of uncertainty
past education where University and adult life would have been. It’s a
calendar so full of appointments you can no longer read the dates. It's
watching Elin suffer when her dystonia takes hold. It's saying goodbye, as we
have had to do again this week, to another beautiful little friend of Elin's and watching amazing parents you have befriended in your joint despair having to cope with
the very worst possible case scenario imaginable. It’s having to face the
thought of your own child’s death. It's a never-ending oppressive
thoughts that can sometimes get the better of you.
My friend Anna bought a book for me recently that has helped
me to see this kind of 'chronic sorrow' grieving for what it is and which
provides advice on how to deal with bereavement of any kind, as well as touching on different kinds of anxiety disorders and depression. 'A
Manual For Heartache' by Cathy Rentzenbrink focuses on dealing with loss and
grief and the ensuing feelings of anxiety and depression that sometimes never
go away after experiencing a life changing incident. The author's 19 year old
brother was involved in a car accident when she was 17, but lived on life
support for the next eight years before he died. Her first book 'The last
Act of Love' which I haven't yet read, charts this part of the story and then
this book describes how the author has subsequently dealt with what
happened and forged a life in the wake of her devastation.
I would recommend this book for anyone dealing with
any kind of grief or loss, or tragic incident, however long ago in your life it
occurred. Mostly what she writes is common sense but there is something very
comforting in reading what you know to be true written down in a simplistic,
logical way by someone else who has been through something unspeakable. The
writing comes from a place of bleakness, but turns into a tender
appreciation of life’s beauty.
At one point she thinks of Nancy Mitford saying that
though life is often dull and sometimes sad, there are currants in the cake.
“Look for the currants.” Ultimately, we might never fix our broken hearts, but
we can still live, and our hearts can grow and appreciate life’s wonder. That
is the feeling the reader is left with.
I found this book comforting for many reasons. I'm not
sure how useful it would be in the immediate aftermath of something horrendous,
where even the suggestion that a book could help you get through it would
probably seem laughable. But for me, I think I really would have benefitted
from reading it in the early years following Elin's birth, during my grieving
process for the daughter that was never born and whilst I was trying to
negotiate what I now understand to have been pretty severe but undiagnosed
(largely because I wouldn't talk to anyone about it) Post Traumatic Stress Disorder whilst trying to care for a very sick baby.
Grief is such a strange beast isn't it. It is almost entirely
universal but affects everyone so differently. No one-way of dealing with
grief is correct, but I was glad to discover that the classic 'five stages of
grief' are no longer really being referred to in psychological circles, since
the more modern realisation that grief is a fluid, chaotic crazy mixed bag
of emotions that sometimes never actually ends. Thats good, it means
anyone suffering does not have to feel like it is time they 'moved on' or 'were
over it'. Sometimes we just have to learn to live with what has happened to us
and accept we will never quite be the same.
Obviously I am a "look for the currents"
kind of person. Or at least I am now, perhaps less so in the immediate wake of what
happened to Elin. It takes a long time to come to the conclusion that you can't
change your loss and so the only way forward is to accept it. But very
occasionally, even after all this time, the loss will resurface and can be
almost as ferocious as it was initially. Apparently this is common and
known as a 'second drowning'. I think I have experienced this once or twice in
the past nine years. The times when you are struck dumb by the magnitude of
what happened and it's a struggle to get out of bed. The way your heart aches for
the child you almost had and then aches with guilt for the betrayal of
Elin as she is now by feeling that way.
Both the article on Chronic Sorrow and the book have
helped to re-focus my attention on managing my thought processes lately. They
make you realise it's not just you, it never was and it never will be.
The phrase "Do not ask 'why me?' but rather 'why not me?'
" is a simplistic but effective way of thinking during black moments I
think. As I grow older, so many of my friends confess suffering from anxiety or
depression or, PTSD or Post Natal Depression or even just ongoing worry about
things which they can't control. I am glad we are able to openly talk about
this stuff, as we may not have been years ago. So I share this information in
the hope that we can all, whether navigating tragedy or not, somehow take back
a little bit of control for ourselves by not being ashamed of looking after our
mental health the way we would our physical health. We all know it's just as
important.
As the author of 'A Manual For Heartache' writes 'Something that always consoles me, that never fails to throw a chink of light
into a dark day, is remembering that others have walked this path before me.
Even as your heart breaks and aches and you can't imagine how you will ever
feel better, you can know one thing for certain. You are not alone"
Such a simple yet powerful and important message.
Xxxx
