You see it’s always been simple for me – someone says “tell me about yourself” and it starts with “married to Carol, dad to James, Kyle and Rebecca”…….and on it goes. The most important things in your life always come out first – well they should.
Looking at the future without Carol in it – sometimes I wonder how I can even do that while she’s right here battling with this disease, but the mind is a curious thing and thoughts like that just happen. The life we should be living at this point in time has already gone, remember this is our parallel existence, so what comes next?
Emotion is something I try very hard to control, but let’s be honest – my heart breaks every day. It’s not something anybody can see – I make sure of that - but inside I have to wake up each morning, put on that brave front and get things organised for another day. That’s why I try to keep myself busy all the time – because it’s the downtime that catches you out. Sitting doing nothing is when the brain is relaxed – that’s when you start feeling sorry for yourself – and that isn’t something I’ll allow myself to do.
I would hope that you’ve picked up quite a few things about who I am from the previous posts - it’s not something I’ve thought about really – I don’t have that kind of ego.
In many ways I’ve always been the opposite of Carol so I’m not the sociable one, as you’ve probably gathered – not comfortable in those situations and any chance of having friends has certainly disappeared since I wrote that earlier post!! Being in a room full of strangers is my idea of hell – small talk is something I just can’t do. I’ve never been interested enough to find things out and don’t think I’m interesting enough for others to want to know about me – and yet here I am opening up just like that – who’d have thought it.
Writing about my perspective doesn’t sit comfortably with me either – it all sounds so selfish. I should be concentrating on Carol and her needs, telling others what she has had to go through and how incredibly inspiring she is. Talking about how that’s affected me doesn’t come easily.
When I say things like “Carol is going through this illness and my life has changed to fit around her needs” it sounds really selfish – of course my life should change to make sure Carol gets everything. But the point I’m trying to get across is that there is no “normal” for us anymore. “Life” has gone into a kind of limbo, because the complete focus is on Carol’s daily needs – but we’ve always been in this together so there was never going to be another option.
Here’s an example of what I’m trying to say. My one real vice is Springsteen – I’ve been fortunate to be able to see 27 shows since 1988 and have taken Carol and the kids with me to see the various tours. Tickets have just gone on sale for next Summer – over here there are 4 UK shows and 2 in Dublin. Now in our previous life I’d have booked tickets for 5 of those shows without even thinking about it, with hotels etc, and all would have been well with the world. In this life I’ve booked for just 2 – the venues that are easiest for me to get straight to and back – and I’m already thinking I may not even get there when the shows come around. You see everything will depend on how Carol is at the time and whether or not I can ensure her care is covered on those 2 specific days. I appreciate that may not be a great example but what I’m trying to say is the things that used to be taken for granted are now regularly out of reach – and that just has to be how it is.
I’m going to stop using the word selfish just as long as you can understand that’s how I feel a lot of the time, with things I think about and don’t necessarily say out loud, and with how most of this looks when it’s written down.
Touching briefly on work - this has provided a distraction for me. I have continued to work full-time throughout everything you’ve read so far – we both agreed I’d do that right from the start – unfortunately we also need the money so what else can you do.
I was completely open with my employer right from Carol’s diagnosis and thankfully they’ve been supportive of everything we’ve needed to do. I’ve worked from home at times and changed my hours to cover all of the appointments and general daily “stuff” that has had to be dealt with.
Because of this Carol obviously has to have support during the day, in addition to the healthcare / nursing visits. I’m very grateful that Samm now does this (with baby) and helps to keep a smile on Carol’s face. Kyle will step in whenever he’s needed and Bec has also helped to cover. This allows me to relax – a little at least – knowing Carol is being taken care of during the weekdays.
I do a good job for my employer, leading a team that’s spread across West Cornwall, and have developed the ability to focus on the work in hand every day - despite always thinking about what’s happening with Carol. It’s not about trying to shut home life off – that can’t be done - it’s just about being able to visualise each day and take everything one step at a time.
Because don’t forget there’s a much more important full-time job waiting for me at home - and I'll write about that next.
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