This is a hard one to write… the whole reason I started this blog was to share how I felt about the following experience, but now I find myself stumbling over the words, or the emotions, or both! Either way it’s been in my draft folder for months…
January 12th 2012: My husband is a way on a course at work to secure his promotion. He’s been away for a while and I have taken on the duties of caring for our 4 month old baby girl and 2 year old son. He took the car with him and I have this memory etched into my mind. I am walking home after having picked up our son from nursery. It’s January so I am bundled in coats and so is our daughter, in the sling around my neck. I knew my son would not quite manage the uphill walk from his nursery so was pushing him home in the pushchair. He was exhausted and fell asleep in his pushchair which somehow makes it seem even heavier. The baby has been asleep the whole way her hat slipping down to cover her eyes…
After the 1st colossal hill was defeated and I walk along a relished 5 minutes of flat before tackling the next mountain of suburbia, I started to curse my husband for taking the car. He was selfish, he didn’t NEED it for his course, he could have got the train… he never thought of me struggling to manage with TWO little ones. This was so typically him! By the time I reached home I was angry, sweaty, with freezing hands, a runny nose and an aching back. Trying to wake two grumpy children and appease one with a biscuit and the other with a dummy. My mobile started ringing before I had even taken the smallest one from her cosey spot snuggled into my heart. I ignored it. It rang again as I put her in her bouncer chair and tried the dummy, and this time I saw it was hubby so I answered it – with a tirade of abuse about how selfish he was for taking the car when I NEEDED it! In his patient, admirable way he always lets me finish my rages…. and then he told me!
‘Well, you don’t have to worry about me having the car any more…’ He said.
‘Why? What’s happened?’ Thinking briefly he’s finished the course early, he’s coming home to help (my prayers have been answered!) Then just as quickly – Oh God! He’s been in an accident, the cars written off,…
He explained that whilst sat in the classroom, he had suffered an unknown seizure. He had felt chest pain and blacked out and lost consciousness. He was told he trembled/shook. They suspected epilepsy. And because of that, they had taken his driving license away for 6 months and sent him back to his unit with a weeks sick leave.
I was left reeling.
I couldn’t quite comprehend what I’d been told. He’d never been sick as long as I knew him!
He didn’t even take paracetamol if ever he got a headache (which was rare!) All the things I’d thought and said to him about being selfish were going around in my head. He was 350 miles away with no way of getting home…he was sick. He needed me and I had yelled and complained and I had no way of reaching him (no car, 2 kids, and 350 miles between us!!) It was dinner time and the kids were getting hungry, so somehow on autopilot I fed and bathed the children and put them to bed. I called him again, but he was distant and quiet, he was exhausted and needed to sleep, he said. Although I felt he was shutting me out, a punishment I deserved for the way I treated him. The children were asleep so I poured some wine and spent hours researching epilepsy in adults on Dr Google… the horror stories, the possible causes, the fear everything…. Our life was turned upside down.
He came home to me the next day, after arranging for a friend to drive 700 miles in a round trip to pick him up. I apologised for the way I had spoken to him, he wasn’t selfish. He was the love of my life and I couldn’t lose him.
I cried. We both tried to comprehend what had happened.It wasn’t that easy…..
It took four months for him to finally see a neurologist and have an MRI scan of his brain to check for tumours, during which time he couldn’t drive, be deployed, hold a weapon or generally do his job. I ferried him to and from work, often with two pyjama-clad, children in tow. He suffered from fatigue and constant headaches. We had no idea what was going on. He lost confidence and we didn’t go out much ‘just in case’. We had no idea what had caused the seizure or why it had happened, so until the Dr’s gave us answers we wanted to stay safe and that meant mostly in our ‘bubble’ – our home.
The neurologist saw him for 5 minutes and categorically confirmed he didn’t have epilepsy. His brain scan confirmed that there was nothing unusual about his brain to cause any kind of seizure. But because of the chest pain we were referred to a cardiologist. This is where things got really complicated.
We had to wait a further 2 months to see a cardiologist. I TRIED very hard, but failed to avoid Google. My son was born with a heart defect, I started to wonder if they were connected, I knew the structure of the heart inside out and joked that I could probably pass some cardiology exams based on what I had learnt on the internet, both with research for my son and now my husband.
But the jokes only hid the pain! – How could the two men, I loved most in the world, how could they both have broken hearts?
I was plagued by stupid, selfish guilt that I used to deflect from my own selfish worry and heartache. But when we saw the cardiologist we were reassured he had probably just fainted he was very fit and healthy, his exercise tolerance test was normal and had great results! Bearing in mind they are usually done on over 50’s, not fit, healthy Military men. He wore a ‘Holter monitor’ (mobile heart recorder) for 48 hours which showed no anomalies. We could see light at the end of the tunnel, it was just a faint that everyone had over reacted to. Just a few more tests…
26th July 2012; it’s hot and I am wearing cut off denim shorts that are barely visible beneath my flowing bohemian vest top. I spent 30 minutes curling and preening my hair to look ‘undone’ and messy, because I was going on a date with my husband to celebrate our 6th wedding anniversary. My father in law had come to visit and take care of our now, ten month old baby and entertain our, now 3 year old little boy. But first we had to visit the hospital for some more of these basic tests. We were confident that this whole ordeal would soon be behind us. I drove him to the hospital in stoney silence. (He was frustrated at still not being able to drive his own car, so to avoid arguments, we avoided talking to one another in the car!) But we parked up and I held his hand as we walked into the vast hospital complex, talking about where we should go for a lunchtime beverage and meal afterwards to celebrate our 6 years together.
The lift wasn’t working and being military he had to report to the military personnel office on the tenth floor. He LOATHES being late for anything, so he ran up to the 10th floor, and back down to the 7th where I waited and we went into cardiology together. He walked straight into his Dr’s room and no doubt because of the run upstairs his heart rate was elevated so they gave him beta blocker medication to slow his heart enough to do an Angeogram scan of his heart and arteries. A normal procedure. I waited in the waiting room, surrounded by the other, elderly, cardiology patients. We were the youngest ones there that day. All went well. The Dr noticed no anomalies, there were no blockages in his arteries, his heart was formed normally. He came to sit in the waiting room next to me…. and very soon went deathly pale. He told me he felt really sick and weak, he needed to lay down. I told a nurse who asked him if he could walk, he nodded and she gestured for him to follow her, he took 3 steps past me and collapsed on the floor. A male nurse quickly lifted his feet in the air and grabbed his wrist to check his pulse. He let go of his legs and checked his neck for a pulse, then he called for help. He said something but all I made out was “cardiac arrest” I couldn’t breathe…There was an alarm sounding somewhere, an emergency assistance announcement over the tannoy…I didn’t hear it properly… I couldn’t stop looking… He looked so pale. So big, so muscular, so lifeless and so still. The same male nurse started chest compressions, Dr’s were rushing in, a man with a defibrillator, a screen was hurriedly pulled in front of him but I could still see his arm jerking with each of the compressions. (See my other post The day you died!) A lady, not a nurse or friend but a stranger, put her arm around my shoulders and sat me down- she spoke to me about my children and I think she stopped me from going into shock.
They hadn’t finished the 30 chest compressions before his heart was beating in rhythm again, albeit slowly.
He was kept in Hospital for a further 5 days, our actual wedding anniversary (29th July) was spent doing crosswords on a hospital ward. He was monitored constantly but they could still not find a reason for what had happened. Arrythmia was the most likely cause, perhaps Bradycardia (slow heart beat) perhaps Tahcycardia (fast heart beat), Wolf Parkinson-White Syndrome, Sick Sinus Syndrome were among many other possibilities that were mentioned and subsequently ‘Googled’. But NO answers.
I was advised to undertake some form of basic CPR training in case this should happen again. As they couldn’t find a reason – they also couldn’t prevent it. So, I sat in a hot, stuffy hospital office as a nurse demonstrated basic CPR. I swallowed hard and pushed the memories of his body laying lifeless just a few days earlier and struggled to concentrate. She had bought a pressure pad resuscitation doll, to demonstrate exactly how hard I would have to press on his chest to have any chance of saving his life. As I watched the lights flicker from red, when I wasn’t pressing hard enough, to green, My arms ached and tears ran down my face. Tears that both the nurse, and I, politely ignored. I fixed my make up before returning to my husband’s bedside.
‘Don’t worry love, you’re in safe hands now!’ I joked.
He had to have a Internal Loop Recorder inserted into his chest to try and monitor what was happening with his heart should he black out again. They needed to ascertain what was happening before they could treat/prevent it.
I couldn’t comprehend why this would happen to us. To him.
Why now? After everything we had been through. He had survived Iraq, Afghanistan, and he was supposed to be ‘mine’ now! We had two years of no deployments to look forward to. This was OUR TIME. Time to raise our family and be together. A time not to miss each other or worry… boy did we take that idea for granted.
I entertained every possible, crazy, idea and possibility – like this was the result of some rare tropical disease he must have contracted on his recent deployment… Or maybe this was some bizarre physical reaction to his lifestyle, maybe it had got used to the adrenalin from tours and adventure training. Perhaps his heart was ‘war -weary’ , tired of battles, and separation, and loss, and glasses raised to dead comrades. I know I was tired of all that. To love a warrior is a hard task, but to be one is something else.
We still don’t know why.
I ask him sometimes, when I feel brave, ‘How does it feel to live with a broken heart?’ Sometimes he’s sweet and he smiles and says ‘It’s not broken if I’ve got you.’ Sometimes he stares into the distance and pretends he hasn’t heard me. I don’t push the subject. I think I am lucky – it’s not so much learning to live with a broken heart as it is learning to live with the fear. The snuggling into his chest to listen to his for heart beat and check the rhythm, listening for his breathing when I wake in the night.
Two years on, and we are determined to move on with our life and put this behind us. We have no definite answers, and this MAY still come back to haunt us in the future, but for now and the last 2 years, we have had no blackouts, no need to perform CPR on the love of my life. The worry is easing and the fear is becoming, slowly, easier to live with.
The truth is that heart disease and Arrhythmia affect more young people than you would realise. According to the Charity Cardiac Risk in the Young ‘Every week in the UK at least 12 young people die of undiagnosed heart conditions.’ Even the footballer , Fabrice Muamba suffered a cardiac arrest during a televised FA Cup match between Bolton and Tottenham Hotspur, from which he recovered despite his heart having stopped for 78 minutes.
I wrote this post not for attention or sympathy or even fundraising (although there will be links at the bottom of this page!) but to raise awareness, not only of what we went through but of what others face. Writing it all down is my way of drawing a line in the sand and moving on.
DON’T BE IGNORANT about heart disease and heart conditions, as I was. I thought it only affected smokers or the elderly or the obese. My son was born with a heart defect that caused heart failure (this means his blood wasn’t oxygenated enough, making him sleepy and weak) If he had the open heart surgery they were discussing, he would forever after have been labelled as having ‘Heart Disease’ because of the scar tissue. Thankfully it didn’t come to that! And my husband was in the peak of physical health, when this all started.
GET AN EDUCATION: Go to a first aid course and learn basic CPR – you really could save someone’s life.
DON’T TAKE LOVED ONES FOR GRANTED! Our time here is so precious. Happily ever after doesn’t last forever, but it is captured in those small little moments of perfect; Sunday mornings in bed before the kids run in, an afternoon beer in the garden after cutting the grass, birthdays, holidays, wedding anniversaries…….(our 8th is in a few days and will hopefully not be spent in hospital this year!)
I am trying to turn a negative two years around and provide some positive karma, so I made a new years resolution to do fundraising for charity. This year I am focusing on the Royal Marines Charitable Trust Fund and here is my justgiving link if you want to support me:
Next year I will be doing events to raise funds for the British Heart Foundation and STARS, but in the meantime if you would like to donate to these very worthwhile charities here are the links.
British Heart Foundation: http://www.bhf.org.uk/get-involved/donate.aspx
STARS (helping people with syncope/blackouts) https://www.justgiving.com/stars/
Cardiac Risk in the young http://www.c-r-y.org.uk/donate