5/ Building resilience...
The prospect of my parents marriage breaking down was something I'd never thought possible. I recall it occurring in friend's lives throughout school and thinking "I'm so glad that will never happen to my mum and dad". It was simply incomprehensible.
My parents did a good job raising Paul and I. All of life's essentials were right there in our lap and we grew up happy and content. Granted, we rarely did family holidays but this wasn't an issue for either of us as we had both been brought up to be independent and as such spent school holidays freely and easily amusing ourselves. Camping in the garden, playing with friends, riding bikes, the simple things brought much pleasure. Pocket money, for instance, was never a given, it had to be earned doing things such as washing the car, mowing the lawn, we understood the value of money and that you have to work for things you want and need in life. I'm very proud and thankful to my mum and dad for enabling me to grow to be a well balanced, resilient adult. They worked together as a seemingly strong team. Dad was successful in his career, slogging his way to Director over the years to provide the income. This however was only possible because Mum was working tirelessly in the background raising Paul and I, keeping the flow of delicious food coming and keeping the house in order. As soon as we were both at school, Mum added to the income by working too, but never at the expense of all the other things she took pleasure in providing for us all. A well oiled machine of efficiency and cooperation.
The reason for the marriage breakdown I have never sought. It isn't my business, that belongs to them both and them exclusively. Needless to say it sent me into a tailspin of emotions, anger, upset, betrayal, loyalty, duty. I needed to support Mum but felt totally unable to do so, barely understanding at times how I was making it through some days when I was feeling particularly poorly.
Paul, as always, was up to the task. He walked away from the career he was working so hard to further, a career he had worked so hard to obtain. The choice was clear for him, he needed to be around for us. It was fantastic having him home again, but not under these circumstances. I felt such sadness that a talented,qualified and licensed aeronautical engineer was now taking a job fixing bikes at Halfords. But he did it, without question out of loyalty and compassion and I'll always be so grateful to him for doing so.
I felt such anger towards my Dad at that time. How could he do that to us? He tells me he loves me but how could he leave me now when I'm in this condition? It didn't make any sense to me. When we would meet up it would cause me so much stress trying to understand, I decided I couldn't do it anymore and the self preservation kicked in. I needed to stay well and this made me feel very poorly. I knew that one day Dad and I would probably be able to work towards resolving the situation, but that day wasn't on the horizon. Contact became minimal. The stressful situation caused Mum, Paul and I to snap at each other often. It's true that you take it out on those closest to you, none of it was actually meant, it was just a pressure relief valve that let go frequently.
My health would fluctuate from one week to the next. One minute I could forget I had an issue, the next I was left wondering
"How long can my heart endure this level of chaos, at this speed? Is this the day when it will just say NO MORE!".
I was regularly back and forth to the mainland for hospital, some planned, some not. I could sense my consultant shared my frustration that a solution was still eluding him. He became convinced after the previous ablations that he was ablating in the right areas but felt that the foci was so deep in the tissue that it was beyond the depth available with the catheter tip. He felt it therefore was only aggravating the area, explaining why my condition was getting worse rather than better. He did however have a plan.
My Dad had thankfully taken a health insurance plan out for the family prior to 1992. All my treatment was conducted in an NHS hospital with NHS staff but the insurance picked up the bill. Because of this, the Doc proceeded to tell us about a new type of catheter for ablation but one that cryogenically ablated rather than utilising heat. He explained that the tip would allow the deeper penetration required to ablate my foci. The only issue was that it was still in development and wouldn't be available for about another year. Also it was in Baltimore in the USA. Sadly the insurance wouldn't send me there, but they would fly it over and approve the procedure. He reiterated it wouldn't be an option on the NHS, at least not for a significant amount of time, so I was very grateful for the insurance policy. My meds were again changed and I was placed on amiodarone.
I was to have two particular inpatient stays that were to test my resolve during my wait for my "cold" ablation. If I was admitted as an emergency, naturally the insurance couldn't guarantee a side room and I would go onto the general ward. It was quickly apparent that it was rare to encounter another patient within 40 years of my age. Majority of patients were grey, with wrinkled skin you only get with the blessing of old age. They weren't like me at all, only just into my twenties, I hadn't earned my first wrinkle yet.
On one occasion an old gentleman was brought into the bed next to me late one evening. The doctor came to go through his admission details, enveloping them both with the blue curtains that offer only the bare minimum of privacy. The patient duly gave his details, disclosing his prior heart bypass surgery a decade earlier. He offered his confession to returning to smoking twenty cigarettes a day. The doctor sighed and said "I don't have to give you the talk do I......" to which the patient replied "No, I realise I shouldn't have started again" dejectedly. I closed my eyes and tried to go to sleep, feeling a bit guilty that it was impossible for me not to be hearing their private conversation. I managed to drift off to sleep.
I was woken violently by alarms going off and loud voices close by my bed. I was in a daze, wondering if there was a fire. The curtains were still drawn next to me and the silhouettes of people, very clear due to the light on the other side of the curtain contrasting starkly to my dark side, moved around quickly. I realised the alarm was not due to a fire but was actually a crash alarm. The old gentleman I heard talking only a few hours earlier was now possibly losing his life. I grabbed at the pillow and pulled it tight over my ears, desperate to muffle the sounds, knowing every minute it went on his chances diminished. I could still see the silhouettes moving, I tightly closed my eyes in a desperate bid to shut out reality. The thin curtain was a totally inadequate barrier at this precise moment. The pillow, at best, only muffled the sounds, it was impossible to shut it out completely. As the minutes passed the sounds grew quieter. I opened my eyes to see the silhouettes had become statues. I removed the pillow. A silhouette spoke, it asked for confirmation of the time, another silhouette duly replied. I felt so shocked and sad for the gentleman. I barely saw his profile when he arrived, I had only heard his voice. I didn't know him, yet I had immense sadness that he was gone. Did he have a wife, children, grandchildren perhaps? I felt for the poor doctor that would need to speak to his next of kin, to deliver the worst news anyone could deliver. I felt total admiration for the doctors and nurses who face these challenges, and appreciation that people choose to do such hard jobs to help others. It served as a harsh example of the frailty of like and how it can be extinguished so suddenly.
On another occasion I was admitted to the cardiac high dependency unit and was very poorly. The doctors felt it would be safer for me if I had a central subclavian line inserted. This is a tube that is introduced via a vein under the collarbone, the tube is then fed down the vein to just above the heart. It allows for very quick administration of IV drugs in an emergency situation.
The doctor described the procedure to me and why it was required. I wasn't overjoyed at the prospect I must admit, but I could agree with the rationale. Agreeing to proceed, the doctor started to prep me. A green surgical sheet was placed over my neck and face, it was literally all I could see. He cleansed the required site and after a small amount of local anaesthetic, made the small incision required for the tube. I felt the tube introduced and the sensation of it moving towards my heart. It was at this point that all hell broke loose.
It seemed my heart hadn't given consent to the tube getting up close and personal, and it was letting me know about it. My heart rate rocketed and I was in the midst of a very severe arrhythmic attack. The solitary doctor called out for assistance, I heard running feet arriving rapidly. Now there were multiple voices surrounding me, the voices were becoming more anxious as they spoke. An unfamiliar voice demanded the mobile X-ray machine. The green sheet obscured my view of anything, my eyes were wide but there was nothing to be seen, just green sheet. I could feel multiple hands all over me. I could feel blood running from the incision down into my armpit, making it hot and sticky. The bed began to move, why was the bed moving? My head starts to spin, what's going on? My legs, my legs! What's going on with my legs? They are jumping, I've no control over my muscles at all. "I can't control my legs!" I cry out from under the sheet, none of the voices answer my exclamation. My legs ease and are back on the bed again. Suddenly, they are doing it again. What is going on? My mind turns to the old gentleman, is this it? Is this my turn? I'm overwhelmed by the wish to see my Mum, I really want my Mum. No! She's coming over to visit me, please don't let her witness this. She can't see this, it'll crush her. Suddenly there is a huge bang in my chest, a massive ectopic beat, then calm, sinus rhythm again. Thank you. The relief washed throughout my whole body. The hands gradually receded until there were only two hands back where they originally started. The bed moved again and eventually the green sheet was removed from my face. The doctor looked at me and said "Stay perfectly still, this tube still needs stitching in place else it may move, someone will arrive shortly to stitch it for you". Paralysed by fear I just say "Ok". I didn't dare move for fear of triggering the arrhythmia again. Mum came and went and I still waited. I waited hours, it was getting late and I feared the doctor wouldn't come and that I may fall asleep and move. Finally he arrived and quickly performed the stitches and I managed to get some sleep, totally exhausted.
The next day there was a doctor talking away at the nurses station. I didn't recognise him but I recognised his voice from the previous night. When he came towards my bed and introduced himself;
"You were here around my bed last night weren't you?" he looked at me puzzled and nodded.
"I recognise your voice, you asked for a mobile x-ray machine".
"What else do you recall?" he enquired.
"The green sheet, many voices and hands on me, the bed being moved, you asking for the x-ray, the horrendous rhythm and not being able to control my legs. What on earth was going on with my legs?".
The doctor looked quite shocked.
"I'm amazed you can remember anything with what we gave you. It seems the tube triggered a very dangerous type of arrhythmia, we were concerned it had been inserted too far and gone into your heart. We needed to move the bed for access with the x-ray machine to check on the position of the tube. Your legs were jumping because we had to use some electricity to try and correct your heart rhythm."
"Ah OK, that makes sense, I was trying as hard as I could to keep my legs still but couldn't"
The doctor finished his ward round then left the ward. He reappeared later that afternoon. He had come to offer me the chance to have counselling following my experience. I declined as I was happy I knew what had occurred and didn't want anything to delay me getting home.
The combined chaos of the current home situation and my recent experiences did however help me with my focus. As time passed I was getting much better at switching my focus from the things that were causing me upset to the things that gave me mental strength and resilience. I began to understand that if I wallowed in the dark places, with self pity, that I was likely to stay there. I got strength from the simple things, the sun shining, the traffic lights staying green, a nice meal, days free of arrhythmia. I got more ruthless and switched off to negativity as best I could;
It's raining - it's still a good day to be alive.
Traffic lights red - I'll just wait for green.
A bad meal - laugh about it.
Days with arrhythmia - relax, breathe, wait for it to pass and be thankful it is still beating, the alternative is far worse.
But the journey would soon be over, the call came. "We have the equipment, we can do your procedure".