Have you ever been to that dismal place of deep, dark desperation? The place where you think, ‘I cannot do this anymore. I cannot go on. Don’t make me go on. Make it stop.’
Most of us have, I suspect, been there. Or been somewhere on the path to that godforsaken place at some point. It is a bleak and isolating experience where you can no longer see the light, and perhaps you don’t even want to.
If you haven’t been there, then lucky you. Unfortunately, at some point in our lives most of us will experience that rug-pulled-out-from-under-you, wind-punched-from-lungs anguish that accompanies every variety of life challenge from relationship breakdown to loss, from health issues, to genuine physical and mental pain.
The question is, what pulls you back from the proverbial edge? What enables you to carry on, to fight back, to build up from that dismal pit? What enables you to do this again…and again…and again.
I will tell you now that there is no one answer to the question I have posed. The answer will vary from person to person and from day to day. For I have been to that dark place several times in this last year, several in fact in this last week stuck in hospital with a further excruciatingly painful bowel obstruction.
The irony the timing of this incident is not lost on me. The cruelty of this latest episode has been felt far more keenly by virtue of its juxtaposition against a period of relative calm and joy. After the misery of surgery and months of chemotherapy, it genuinely felt like my world was opening up; for travel, to see friends, to get back to work, to climb mountains even (more about Snowden in my next blog). Then last Thursday after a surprisingly magical day filled with unusually well-behaved children and a girly supper that culminated in dancing around the kitchen table, it folded in again without warning. Collapsing spectacularly into writhing, gut-wrenching agony which no standard painkiller could touch. (Believe me, I tried)
I put on my brave game-face for long enough to outsource my childcare to my wonderfully supportive nursery, drive myself to A&E and throw myself at the mercy of the NHS. It was as I suspected. Another bowel obstruction. I knew and feared the road ahead. Days of Nil by Mouth (NBM) and zero calories. A regimen which leaves you weak and frail. This accompanied by the institutional trappings and routines of the NHS; endless cannulas, saline drips, the wards rounds of drugs that bring relief (and occasionally morphine induced and welcome oblivion), the dreaded nasogastric (NG) tube…and the incessant vomiting.
Despite having been here before I had forgotten the pain, my memory had erased it. Pain in which there is no world beyond the torment of your own body. All-consuming. Exhausting. Seemingly unending. In the grip of such agony, there is no light and no hope.
Unlike childbirth, in which the gap between contractions brings intermittent relief, and wherein the prize at the end is great indeed, this pain has no silver lining, no reprieve. It was at times relentless. Pain can also shapeshift and morph; gain control of the lower abdominal spasms and then the back ache become acute. Resolve the stabbing back pain and perpetual nausea ensues.
It is a game of cat and mouse, firefighting to control the pain rather than fix the root cause of the problem. As a rationale pain-free person I would suggest focusing on the root cause. Obviously. But as a patient who has literally counted down twenty minutes, broken in seconds and half seconds before being allowed my next IV pain-quelling fix, I say ‘focus on the pain.’
At its worst, having literally performed the counting exercise above for just over two hours, alone in a fabric cubicle, sat on the edge of a bed rocking silently forward and back with a sick bowl in hand, belching foul air every few minutes whilst the joyous cacophony of visiting hour floats over the curtains, I can tell you it is a low and humbling place. I cried. I prayed. I would have done almost anything for the pain and nausea to stop. I had already thrown up litres of dark, murky, bilious liquid that day. Yet every few hours it would accrue, reach a certain level and pour out of me.
I am conscious that many endure more and worse than the above, but on the fifth day, at the point when my body and mind was exhausted by sleeplessness, lack of calories and by the pain itself, this was my rock bottom. I could not see an end in sight, not even a glimmer of light. As someone who (in sound mind and health) is of the ‘pick-yourself-up-and-try-again’ school of thought, being in and being reminded of that horrible, faithless place is tough to stomach.
Yet I digress. My original query was about the things that get you through the pain when medicine fails. When it is dark and you cannot see the light you often need an external influence to jolt you back to belief, or to show you the flicker of hope that you cannot yet see.
Simply counting down the clock and knowing each half second was a half second closer to experiencing less pain was a helpful tactic, but it doesn’t bring the light like the comfort others can offer.
During this particular stay certain things made the difference between despair and hope. Of course I found it helped physically having someone there with me. To smile, to hold my hand, maybe to rub my back, but mostly just to be there and remind me ‘this is not the end.’
But in hospital there are many hours in which you are, by necessity, alone. Fortunately, my amazing daughter as I staggered out the house that fateful Friday with a hospital bag, handed me two items; a necklace of plastic, glittery beads that she had hand-strung with love the day before, and a garish, plush frog called Smoochy, in case I got lonely. I can’t tell you how much those items helped me. Smoochy, in particular. Omnipresent reminders of my family and my children. Reasons to drag myself off the floor and keep fighting. Reasons to get through just another minute, and then another, and then another.
Of course, my family and friends have, as ever, rallied to support me through visits and messages, virtual and real, photos of sunrises, hugs, etc. Those little messages, each one perhaps insignificant to the sender was a sign to me that the outside world cared. Each message served as a reminder to breathe deeply, a nudge to believe that this pain would pass, that I would get better and that I would get beyond this.
|@pswecreate Sam Pooley-Stride|
Two ‘messages,’ in particular, stick in my mind.
The first involved a stunning, glorious, life-enhancing painting created by a talented friend and artist, Sam Pooley-Stride @pswecreate, which reminded me of a tower of strength, the strength that family members offer to one another to reach great heights. At the time of receiving it I had no strength left, but as I stared at it I realised that very few things are strong all the time. Much like Jenga bricks, towers can be destabilised, toppled and yet rebuilt. That inspirational image helped motivate me to think beyond the pain to the future. A future in which I regain my balance and equilibrium and become part of that strong family unit again.
Another photo sent by a friend was of a whimsical trinket that proclaims ‘when it rains looks for rainbows, when it’s dark look for stars.’ In my windowless ward there was a dark humour to this that drew a wry smile and provoked me to locate a rainbow photo on my phone, taken from my kitchen window weeks before.
Then finally one morning I woke up and the ordeal was over. The day in which I could finally say yes to the question ‘When are you coming home Mummy?’ Magically it was the day of my daughter’s fourth birthday and the professionals consented to my release.
So now I am home. Weak, institutionalised and chastened, but home. It takes time to heal from hospital stays. Circadian rhythms disrupted by the routines of life on the ward; continuous cycles of hot drinks, washing, meals, clinicians, medications, more drinks and meals and medications, lights never off, silence non-existent. It is hard to be in there, and just as hard to leave and re-adapt to the world outside.
I have repeatedly asked what I can do to avoid this happening again, but beyond the obvious tips like stay hydrated, eat well, avoid stress (which I thought I was doing), there is no specific fault that lies at my door. It can simply be down to anatomy and scar tissue.
The thought that this could happen again is terrifying. The thought that it could be next week, next month, next year. This is along with the unmentionable threat of cancer reoccurrence, but let us not dwell on that.
You should know that many of you reading are those external influences that helped pull me back from the darkness of despair. In pain, I rarely have the capacity to reply or respond to messages, but those little snippets of love and concern were received with immense gratitude, and collectively they built the ladder to allow me to claim out of my pit.
At times, often through no fault of our own, we all need those external influences to remind us that we matter. In deep darkness, it can be tempting to lock oneself in and shut everything out. Yet this is foolish. Those little drops of care and concern are the tiny specks of light that alone seem in significant, yet together they can turn a dark night into a starry sky, and thence to a sunrise and the daylight beyond.
As someone who has, once again, felt deeply humbled by the human compassion and warmth with which I have been guided back to health and light, I encourage everyone to consider two things today. Firstly, think of someone who might be cheered by a little light in their lives and take a small action to deliver it, a message, a phone call, anything. And if, woefully, you are in that other, darker place, dare to open yourself up to those who seek to help, it’s not easy, but remember that each tiny chink of light that you let in is a step towards a brighter tomorrow.
(For those interested...this is Smoochy, the adorable frog who kept me company on lonely hospital nights)