Survivor guilt

 As new year & Hogmanay approaches I always get deep into my own thoughts "what have I achieved this year" and "what is my target next year" is never far from my thoughts at this time. I love Hogmanay with it's tradition in my childhood household as a new start. My parents instilled looking ahead positively at this time as I grew up.

I have always been like this. Some have called me a dreamer but as I look back on my life I have a history of achieving those dreams eventually. I have experienced & enjoyed so much I surprise myself at times with memories that spring into my mind from surprising triggers. Like my detailed tour of Westminster & drunken late night on the famous Westminster terrace as guest of then rebel MP but now shadow chancellor John McDonnel. The debate went on until 2am in the morning. We got absolutely legless & he drove us home.

This sense of trying to experience so much was heightened 9 years ago when diagnosed with heart failure and told the blood clot would have killed me if it had moved. 

I was so lucky to meet & fall in love with my fellow heart patient Lorna early in my heart journey. I was reckless in the early days after diagnosis when I didn't understand the strange feelings I was having & I blew any savings I had. 

Lorna gave me direction & structure to achieve goals together. I have settled down to a busy but wonderful life.  The Olympics, Commonwealth Games, Tours of Scotland, European & Scottish parliaments, the list is staggering for 2 heart failure patients but basically we just want to enjoy this life so much but we also strive to include & show the kids to follow their dreams also.

I accepted early on in my heart failure journey that my death could be instant at any time, I do not fear it as I believe 9 years on those closest to me will remember me fondly with shared happy memories. 

I have spent so much quality time with those I love especially nephews/nieces I simply didn't know before. Lorna & my daughters will be financially secure & I tell them not to mourn me for long but instead to fondly remember me then carry on the dreaming.

If your close to heart failure groups you see death regularly although not as often as you would think now because of modern medicine. Not all of them shake me and I just accept majority of them as part of my journey.

3 so far have affected me badly, Sandra, Helen & Yasmina I remember exactly where I was when I got told. Their own heart journeys touched me and when they suddenly ended I panicked at am I doing enough to justify my extended life. Have I done enough with those closest I love so much. Have I just fallen into complacency at my achievements so far? My life comes under a dark cloud for a while as I consider the implications, I become scared, I become angry, I have come to understand the term is survivor guilt.

So this month I got another shock that shook me but from an unexpected person not heart related. In my 2005's boys football team I have one lad who plays for 1st team who if I am short & games don't collide I call on the Friday & he comes and plays for my team. I secretly wish for this every week. His mum is always so positive on the phone & usually when she drops him off she tells me he loves playing for my team. She usually rushes off to drop the older boy at his football. I called last Friday night and she says straight away yes as she explains he gets excited when he heard her say "hi John". He arrived with his dad last week and I love coaching this lad, his enthusiasm is infectious within a team, Kyle tells me he loves playing with him. Every game he listens and always does what I ask, we win 6-1. I speak to his dad to tell him this & he explains the lad enjoys my team because of how I coach him. He feels my team would beat the 1st team now, The respect is mutual & my dealings with this family are always a joy & positive.

As I am walking with Hamish on a Thursday morning with a full positive day planned I get a text from football Team Secretary, the mum it appears had brain hemorrage and died instantly day before. She was 45 with 3 young boys. 

Suddenly I regonise the feelings of panic within me, the questions will take over my thoughts, I need to be careful I don't shut out Lorna and others during this process as I have before. I need to be careful with those that annoy me because my reactions can be brutal.

Like any experience hopefully you learn from it so straight away I discuss this with Lorna and of course she too has similar thoughts, I need to be careful especially at work because it isn't important to me at times like this. Everything is about Lorna, family & the kids. I have an anger within me that is hard to explain. I worry about Lorna & the girls after I go.

The last few days have been hard & I so want to cuddle my daughters but they are so far away. I beat myself up that I am not doing enough with Lorna & family especially my dad. I need to make next year more full & more worthwhile than even this year. I do not fear death but I worry for those close to me.

This process will last for weeks maybe months until I plan something with those I love, I need to visit Phil or Robert. I must tell all I love them. I need to cuddle Lorna more. Survivor guilt is not a bad thing if you understand it & use it to overcome tiredness, fatigue and pains. It just isn't a nice period in my journey. This is one reason I drive myself to achieve so much. I know I am so lucky to get these extra days, months & years. I just wonder why I got them when some didn't.

My work journey

My employers of 20 years have played a huge part in my heart failure journey, my salary is above average,  I am luckymy benefits include full sick pay for absences up to 4 months, my pension is good even if I doubt I will use much of it but death benefits will financially secure my family after I go.

At the time of my diagnosis my career was at its peak in Cornwall. I was recognised as good at my job and further career opportunities looked good and most importantly I loved my job. I felt 100% confident in my abilities. So what has changed over the last 9 years?

My 1st long lay off after diagnosis was 4 months and I returned to a new challenge in Glasgow. Looking back I know now I made my 1st mistake here. But I was in denial of my chronic progressive heart condition. I didn't lie to my employers I just didn't tell them the truth because, at that point, even I didn't know the truth. Did they support me? I don't think so and what we had was 2 sides not trusting or understanding each other.

My return to work should have been slower & more structured. Not once did I meet occupational health because I returned saying am fully recovered. In retrospect I should have accepted maybe a drop in role & salary would have been the best option. Instead retaining my salary was everything to me. Nobody had that conversation with me & they basically believed me when I said I was fit to return. 

It soon became clear that my personality had changed, my mind was muddled, I fought to hide it but only made it worse, the problem was not physical it was purely psychological, paranoia was at the centre of it, negativity had replaced positivity. Motivation was a daily problem, I wanted to work but would question was it worth the hassle. After facing possible death and recovering it's easy for your mindset to become 'is this really worth it? shouldn't I be doing something more with my life?'

When I talk to fellow heart patients now about them returning to work after being diagnosed I say what my GP said to me 'you have been through a life changing event at a relatively young age, it will change you' I only lasted 2 years before my heart failure reared its ugly head again. This time I took even longer off and as a result my career in a job I once loved was hanging by a thread.

My involvement with my employers during this time off and prior to my operation and then my return after I had my device fitted which uniquely made me 100% device dependant was again handled poorly by me. But this time I had no one to ask, I had no fellow heart patient to give me advice. I fought my employers. I hated them for the perceived injustice when what I should have done is admitted my own faults and tried to find the best job for me irrelevant of salary. After my return I did reach 2 years as a green performer but looking back I didn't enjoy it. I fought the fight admirably but stupidly. I struggled through not enjoying it and some members in my team did not see my previous pre diagnosis leadership skills that I had been praised for. Basically I survived by the skin of my teeth. Now I am the level below on a lower salary and I still struggle sometimes but I am a green performer and once again I enjoy my job. 

So what has changed? The truth is it comes down to my Store manager, people manager and regional teams attitude towards me and my condition. I feel confident to openly talk about my condition and problems to them. I trust them! I've had to accept that I will never reach the peaks of my career again but I am an experienced manager with so much to give and for the 1st time since my diagnosis I can talk to my manager and people manager about appointments, fatigue and illness. I have, for the 1st time, explained how I struggle in meetings. They ask me if I need help and offer genuine support.

It has been such a steep learning curve on how to handle a chronic progressive heart condition and still work. So many mistakes on both sides but hopefully we can both use our experiences for future heart patients returning to work. After all more of us are living so it is happening more often. 

At a course a few weeks ago in one room were 6 people out of 20 who have played a huge part in my work journey. 2 of them were very bad experiences but I realised that the majority were good ones. One I wanted to apologise to for basically receiving the worst my condition made me. The regional people manager mentioned to this group my End2End being inspiring and I thanked her after it for everything she had done during my End2End. This lady tracked and followed my progress on Facebook often offering support at crucial times. She spoke at the meeting that day about changing cultures and I believed her because I trust her. I wanted to hug and thank her because for the 1st time I believed my employer was willing to learn about how to support those with my health problems. She has spoke consistently at our store meetings in the last 2 years about leadership and its importance. And so I want to tell her she is leading the way and I have seen the change for good within our company. However the fear and paranoid thoughts of being extremely open about my heart condition are still there for me. Maybe because when I was diagnosed I was told I'd never be able to work again! 

Within the next 2 years my device will be changed and I once again will need to return to work after long emotional life changing lay off but I will approach it differently and I believe my employer will too because of those I have mentioned above. I will approach my return more open minded. I will ask for more time and a structured return but not expect or demand it. I will be honest with myself on how I am feeling both physically and mentally. Then more importantly if not up to job I will ask what they can offer but not make selfish unreasonable demands. Hopefully we can reach a decision that suits us both because at this moment in time they have a highly motivated experienced employee who hasn't had day off sick in 2 years so both sides benefit from me being there. 

Employers, in general, need to learn due to medical advances more employees will return to work with medical issues like mine but they will only learn if more like me speak up. It is scary to admit failings but I have seen positive changes so it does work. I have high hopes for heart patients and future work opportunies.