“I remember the wild agony of no way out and how the stars looked, endless and forever, and your mind can feel like it’s burning up at all the edges and there’s never going to be any way to stop the flame.”
Ann Voskamp
Only those who have experienced the trauma of a suicidal mind can truly understand how agonisingly dangerous it is.
We usually do the upmost in our lives to avoid things that might kill or harm us. But when it is your mind trying to kill and harm itself – it can feel impossible to get away from. It takes you hostage, binding you up with all its lies and accusations, torturing you inside your own head, home and life.
Refusing to let you go.
If only I could explain to you what it feels like…
I recently read the beautiful article on suicide that the above quote is from. And straight away I connected with the author whom I instantly knew understood.
You see I never used to understand.
I used to assume that I would never think that way. That life couldn’t get that bad for me. That I couldn’t be that selfish. I assumed that my ‘superior’ coping mechanisms could surely carry me through any storm that came my way.
Until life took me through seasons when I truly felt …. “the wild agony of no way out…”
At the end of April this year I dramatically relapsed in my spinal CSF leak and arachnoiditis symptoms…AGAIN!! After eighteen months of clear improvement since my last epidural blood patch. Everything came crashing down again physically and mentally.
And I found I had absolutely NOTHING left to fight with.
I had completely burnt myself out physically, mentally, emotionally and spiritually from fighting this horrible condition and all the misunderstanding’s surrounding it – for so long.
I ended up stuck in bed nearly all – day and night – in almost perpetual intense, agonising pain. Everything simply exploded symptom wise and it felt like I was getting every type of headache and nerve pain in my spine you can get on top of the ‘low pressure’ issues. It was non-stop, non-positional pain, and made worse by the fact I was hardly sleeping at all.
I am only now beginning to feel more ready to talk about what happened back then more openly. Rather than just wanting to hide from the world and not speak up.
It’s only crippling shame that tries to keep me silent.
But as I get increasingly well, I know that part of my healing and restoration comes in being able to talk more openly about how bad things were. I know that the only way to deal with shame is to speak it out. So as to process my own journey and also to connect with others’ suffering and struggling, as well as to help others to understand more.
So here’s some more of the brutal and raw truth about the traumatic wrestlings of a suicidal mind. At the time, I wrote some poetry in my iPhone notes. I guess to try and process my thoughts and explain to others how it felt. I did show these to my husband at the time which he appreciated – even though they were often painful for him to read.
This Pain in My Head
I am going mad
This pain in my head
Persists and won’t go away
It’s killing me slowly
Polluting my life
Stealing everything away
What do you do When you are Drowning?
I am drowning – can you see?
My head keeps sinking below the surface.
My legs furiously attempting to keep my head above the waves.
I have no strength left to fight.
My legs are growing so tired.
My mind just won’t stop whirring.
The pain won’t let me go.
I am suffocating – can’t you see?
Where life is being squeezed out of me.
My energy leaving me, my endurance gone.
My life just a shadow of what it once was.
I am in inner & outer torment – can you see?
The pain and debilitation slowly taking over all I am.
Like gangrene it eats away at me.
Stealing my life, my strength, my hope
I love you all so much – can you see?
I am devastated by just what may be.
To think of your tears, your cries, your heartbreak and pain.
To think of destruction eating away at your hearts.
To think of the backlash and the battle.
To think of all the awful desolation left behind.
How could I?
How can I?
What am I supposed to do?
Do I keep existing or allow the waves to take me where they will.
So the battle rages and I sink yet deeper still into the darkness.
The pit of despair – a place that won’t let you go.
Destruction all around me.
Devastation following.
Despair keeps on calling my name.
I am stuck in the pain and anguish of living here.
Trying to love here…
Trying to suffer well…
Trying to hold on…
Trying to clutch on to life…
Trying to not let go…
But losing…
I am losing…
I am losing…
I don’t want to be lost
But devastation is calling my name.
The Torment of Pain
Pain torments you it pulls, pushes & wrestles with your mind
Persistent pain consumes you until nothing else is left
It eats you alive leaving your flesh exposed
Infection after infection ravages your thinking
Mind constantly infected
Tormented
Trying to hold on
Trying
Trying
Trying to hold on
Gasping
Reaching
Clutching
By my finger nails
Trying to hold on
How Long am I Supposed to Endure?
How long am I supposed to endure?
She asked, writhing around in pain
How long do I need to exist in this for
She asked, living as if death was life
They tried to understand
but still couldn’t see
the pain
that never went away.
The torture of not knowing how long to endure
Was stealing her whole life away
The problem was
she could no longer see
a future any better than this
She tried and she tried to hold on for love
But the pain was pulling her to defeat
Many would question the size of her love
The fact she could not endure or remain
But that is because they never lived in her body
And never kept on feeling her pain
Somehow reading them as separate poems doesn’t quite do justice to the intensity of the trauma that takes over your mind when you are backed into the ‘corner of dark shadows’ that is suicidal ideation.
Your mind is completely out of control.
You can no longer think rationally. It’s just a massive ball of dark, oppressive and negative thoughts crippling your perspective and adding to your intense internal and external agony.
I still felt so much love and love was actually my only anchor and light. But love was often even painful to feel, because you think that if you really loved others – that much – you should be able to endure and remain.
Right?
But you don’t have any energy to remain anymore.
It’s relentless.
Completely overwhelming.
All consuming.
Utterly unbearable.
And as dark as dark can be.
….And I was hardly sleeping at all. So there was no relief.
That’s why it’s called ‘mental illness’ – because you are extremely unwell.
And you just can’t ‘snap out of it’. Or just ‘think positive thoughts’. Or ‘reign in your thoughts’. Or simply ‘change your perspective’.
You no longer have that ability.
Your mind is no longer your own.
Without the love, compassion, support and care of my amazing husband, family, church family, friends and doctors, I am not sure I would have made it through.
It still scares me to know first hand what a vulnerable and dangerously over stretched mind can end up like.
But I do know talking openly about it shows how far I have come since then. To know that I was simply very very sick – both physically and mentally. It breaks my heart to know that others are facing this same battle – in similar and very different ways – each and every day.
Unless we can try to listen and understand more what goes on the the mind of someone feeling suicidal, we won’t be able to help them overcome the immense stigma, shame, misunderstandings and trauma of that experience. We need to know how to best try and help ourselves when we find ourselves there. As well as helping those stuck in the oppressive prison of a mind on the edge of suicide.
So that’s why I am opening up my own immensely humbling experience again. To let another struggling soul know today that you are not alone. I have been there and I want you to know…
It can get better again.
I know you can’t see it – yet.
I couldn’t either.
I only felt the ‘agony of no way out.’
But one day the sun did again begin to break through the clouds.
And I began to walk out.
Albeit bruised, battered, burned, startled and scared from the fight. But I made it through again. So please just keep putting one foot in front of the other.
Just hold on a little bit longer.
Allow someone else to walk through it with you.
And then get strong enough to share your story. Because it might help to reach and save another struggling soul too.
“I wanted the brave to speak up, to speak the Truth and Love:
Ann Voskamp
Shame is a bully and Grace is a shield. You are safe here.
To write it on walls and on arms and right across wounds:
“No Shame.
No Fear.
No Hiding.
Always safe for the suffering here...”
If we only knew what fire every person is facing — there isn’t one person we wouldn’t help fight their fire with the heat of a greater love.”
To read more about my first mental health crisis please try this post; ‘Breaking Through the Darkness .’ To read more about my beginning to understand how crippling shame had become in my life please see; ‘The Shame of Chronic Illness and Pain.’
For more posts about my story of living with a spinal CSF Leak please look at the subject heading on the menu bar above.
Here is a brilliant 2 min animation about Spinal CSF leaks.
For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.
Becky Hill's Blog 
Thank u so, so much for your raw honesty Becky. I am more tempted to feel guilty/embarrassed and tuck the experience out of sight; but you haven’t done that and I deeply relate to what u have shared. I always considered myself mentally strong. Then came the rapid decline in my physical and then mental health which left me wanting to die. I was very scared by the intensity of those thoughts. My despair and hopelessness came from months of living with a spinal CSF leak coupled with the sense of abandonment (to a life of disability in a ‘fixable’ condition) I felt from my neurology team who thought ‘I would just get better’ without help. On top of that was the grief I felt for the life & independence I had lost. When experiencing a spinal CSF leak we look like we are enjoying a lazy life of lying down, but reality is we are being endlessly & invisibly tortured. I started to tell my friends my thoughts (and I looked up ways of committing suicide) so my husband wouldn’t get the blame when I died. My children had become my carers and I really believed my dear ones would be better off without me. I cried out to God at night as I struggled to sleep, but he appeared silent. Then one night in hospital Pinterest sent me a Bible verse.
“1 Kings 19 – when Elijah said ‘Lord I want to die’ God gave him the strength to live. ”
I googled it and I felt relief that God understood everything that was going on with me, and why I felt this way – because here it was recorded that his own prophet had wanted to die too! Like Elijah I was “spent’. I could not do one single thing to help myself and I didn’t know how to carry on. I had reached a literal ‘dead end’. Like Elijah I received strength from angels, but mine came in the form of friends, family and complete strangers who pulled me through and also found me the much needed medical help. People say how brave I was. I wasn’t. It was a matter of just trying to get through every minute, hour,day….. And that’s all you can/ need to do when u feel like this. So as Becky says – keep holding on, even if just by your fingernails. Just a little bit longer….. There is hope for the hopeless. Don’t give up. Xx
I am thrilled to read u r ‘increasingly well’ Becky. Five months post leak fix – getting there slowly too. Xxx
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Dear Vivienne,
How wonderful to hear from you and for you to reply to my post. Firstly, thank you so much for your empathy, kindness and willingness to share some of your own story in response. I really do believe that our stories can help others. Especially when they have been particularly painful. I have actually followed some of your case since I relapsed again. I saw your newspaper stories when I was searching for something after relapsing at the end of April. My husbands parents also live not far from Weston-Supermare ( and go to church there) and they had seen your article in their local paper. I then followed some of your husbands posts in the UK CSF leak group since your fix in Germany. Your story actually gave me hope to endure my own. Although my story has been stretched out over many years of worse and better times – then multiple relapses – of course. I hope you have been saved that trauma.
A lot of my own despair stemmed from the fact that my leak was never found and the CT Myelogram I had two years ago caused me to seizure which I thought would create problems for more investigations. I too had a history of battles and fights with Neurologists and Anaesthetists at my local hospital over the first year and a half. I now have a wonderful consultant but without finding the leak we were restricted in what could be done.
I just had no hope left this time and had totally burnt myself out in every way – and last time I relapsed that badly I hadn’t got any better really for months until I had another blind blood patch. This time I had simply worn myself out trying to get well – but never fully getting well – which made the relapse even worse I think. I am a lot better than I was in end of April/ May – but still obviously leaking and just trying to manage symptoms. So I can get some longer patches upright which makes life that bit easier. I am also A LOT better mentally.
The good news is my most recent MRI seems to have finally shown the leak in my neck behind the spinal cord. Which is amazing really because the other 8 I have had didn’t show anything. I have since had a second more specialised MRI to try and categorise and confirm location. So there is hope there and the UK hospital I am now at is learning all the time. So yes there is always hope – even when we can’t see it. That is important for people to hear. It also means I have perhaps been leaking somewhat all the way through my journey – hence always hitting a plateau before getting worse again. Which makes more sense of my journey. It will also be good just to have that evidence because without it doubts can creep into peoples minds – which didn’t help my mental health of course.
In the meantime I am trying to live as well as I can here. I had to go through another cycle of grief and acceptance to get here but I feel more peace now.
God and His love has been my anchor throughout this journey. Sometimes I have had to wrestle through the darkness to find Him again. But even when I can no longer feel Him close – I have seen His love through my family, church family and many friends. I am so glad that the scripture about Elijah helped you. God’s word has held me fast so many times on this impossible road.
I really hope that you too keep feeling more and more like your old self. Even after successful treatment there is still another difficult journey of healing that needs to be faced and endured. Nothing is simple in this CSF leak game! Be kind to yourself and patient and lets pray that step by step you gain back more and more that was lost. Sending love to you and your family xx
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Your blog’s have been a great source of information/ inspiration to me since that first moment of Googling CSF leaks! Martin and I were wondering how you were doing and are saddened to hear of your relapse. It is encouraging to know you do now have caring doctors working to help you. What a relief that is. If you are fit to travel and end up in WSM, would love to meet! Also happy for contact via email or Watts app any time. I really must get on face book! Wishing you all the very best. Viv xx
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Yes I lost my voice for a while after this last relapse. I just feel like I want to hide from the world when things are that bad – I actually had to privatise my blog for a month or so because I couldn’t deal with it all. But that’s simply the shame of a mental and physical health crisis – you loose all confidence in everything. BUT … I then regain a more healthy perspective again and realise that my story is simply that. My story! I can only tell it with as much honesty as I can and hope that it connects with others who are struggling.
Yes – lets see maybe one time we can manage a meet up down your way! But yes I am also fine with being in contact other ways. Through social media private messaging I am sure we could sort that out!
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Btw in relation to you looking on the internet etc… I didn’t make definitive plans – but constantly thought through my options, especially over the first few weeks. I even searched through the internet for options…
But I did tell my husband and I let him read the poems and suicide letters I had written to my closest loved ones (just in case!!) – which professionals told him was a good sign. They said it’s those who say nothing that are more likely to act on it.
He got particularly distressed the day I told him I had been searching the internet about ways to kill yourself. After that he took my phone off me for a bit. But it doesn’t stop the mind going over and over it all does it.
At this point you have lost all rationale and control over your mind. Your perspective is no longer your own and so messed up that I was almost ‘shocked’ at how distressed Matt was at what I had been doing. My mind was like ‘why are you reacting so strongly – this is just the rational thing that needs to happen…’. It’s like you are completely detached from being able to look outside of this turmoil you are in internally. You are unable to see with a different perspective. You mind is no longer under your control.
I also felt so angry with the universe (and sometimes God) that what ‘I had’ wasn’t terminal and so I couldn’t share in the ‘dignity’ of a natural end to the suffering. That’s what I longed for at that time. To know the end was ahead – that I knew how long I had to endure. That is wasn’t potentially a whole life time. But if you knew it was soon you could endure long enough to say goodbye with dignity and grace and try to minimise the devastation that would come from it.
Death had suddenly seemed so beautiful to me – so peaceful. I felt jealous of those who could leave this world behind. In my messed up mind I wished all our family could go together because the world just seemed like such a horrible place to be. I didn’t want the kids to have to grow up in the aftermath of their Mums suicide in a world that at the time just seemed so dark, so broken, so meaningless, so painful, so exhausting.
So knowing my ‘leaving’ would devastate them. I suggested to Matt that I wished we could ‘all go together’.
…. that’s how ‘ILL’ I was mentally.
That’s why it’s called ‘mental illness’ because you are extremely unwell. You are in no way yourself or able to think clearly at all.
That’s why everyone was one phone call away from bringing in the community ‘Psychiatry Crisis Team’ to talk to me and possibly sedate me or get me sleeping.
But eventually the combination of medication from the GP to help me sleep and try and control some of the extra pain kicked in. (it had just unfortunately taken a while to see the right person to access the help I needed to avert the crisis quickly escalating as it did – that can be the problem with all the NHS waits etc).
It upsets me to talk about it because it scares me to know that is how bad a vulnerable and dangerously over stretched mind can end up,
But you know talking about it shows how far you have come. To be able to finally think back and see how very unwell you were. To know that you were simply very very sick physically and mentally. And to feel less and less shame about it. Helps me to know that I am healing from that trauma. and instead can use my story to help me and others like me.
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This is brilliant, amazing! How you rose from the bottom of the pit is a miracle!
I too had entered that deep dark pit of nothingness! Dementia symptoms, no memory, no life…eventually a patch saved me. I’m lucky & blessed so there is hope..
Thank you Becky for sharing your journey. It certainly gives explanation & hope to many. ❤️ xxx
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Thank you so much for your comment Linda & for sharing some of your own story of darkness – but then hope. I am so glad that the patch helped you. This condition is brutal in so many ways. But you are right … they is always hope within it if we can keep holding on to it. ❤️ xx
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I have been in those shoes 40 yrs ago. Let me just say that depression is resilient regardless. One has to develop skills to recognize the signs of depression, followed by suicidal thoughts regardless how mild or severe they are. I have come to understand that I am prone to it. I have also recognized that the negative events in my life have impacted my decision makings therefore recognizing how vulnerable I am in certain times have saved me from falling into the abyss. This is how I call it, so my mind connects with the word, I take action to reverse the negative thoughts that can spiralled into an abyss. I have had arachnoiditis for over 4o years which translated in many losses in my life. Do I feel ashamed for attempting to commit suicide? nope, absolutely not. The healthcare system rigged the rules, damaged spine therefore I have coped as well a I could . I pat myself on the back for working hard and keeping my spirits up.
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Thank you so much for your comment & sharing your story. It’s so important that people ‘break the shame & silence’ through speaking up about their own struggles and battles. I agree that it is important to recognise the signs, triggers & to have the best support network to help us through the worst storm. I am sorry you have faced arachnoiditis for 40 years. I am not surprised you have been in this place too. But I am so glad that you did work hard to find a way through. Because it also inspires others (like me just 6 years in) that they can keep going too – which brings courage to face the dark days of relentless, debilitating pain. I didn’t know I had arachnoiditis when I felt like that & wrote this post. I knew I suffered from a spinal CSF leak but didn’t understand the full body/ spinal pain flare (as well as the head pain) and it’s utter trauma… mixed with the fears of doctors no longer believing how bad it could get. Now I know about the arachnoiditis that has been there for years – it makes perfect rational sense that I felt like that. Hence why I will keep raising awareness so that others can begin to understand themselves more too & so that they don’t have to carry shame they have no need to carry with the horrific illness itself.
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