Help, Haircuts & Half-term

I’ve often found that much of my perception of life can be articulated and described in sets of 3. The emotional landscape that I found myself now was no different. On a basic primal level there was firstly an underlying, unsophisticated fear of death. I’ve been finding this the least hard aspect of the experience to understand, but the most troublesome to overcome in the struggle to ‘live’ with my new reality. A layer up there is a more intellectualized domain of thought concerned with loss. By that I mean me coming to terms with the anticipated loss of my own ‘life’, not physical death, but acceptance of a need to let go of everything from planned and desired experiences through to mechanisms of autonomy long granted for granted (like not being able to drive for instance). At this point this ‘letting go’ is not because I’ve somehow immediately transitioned to a point where I’ve fully accepted the concept of physical death (Sweet Muma, I really haven’t!), but it’s instead a realization that in the immediate future at least, my life will only be about the treatment for my illness. Not much opportunity for ‘living’ exists beyond those treatments and events. The third horrible, muddy lake of my personal reality is the anticipation and observance of the impact that my illness is now having on the people around me; my wife, kids, family, friends and work-mates. I’m blessed to be surrounded by a diverse, exciting, inspiring and beautiful mix of people and relationships across all these groups. Suddenly I have become the epicenter of a ‘disturbance’ which to varying levels of intensity is causing disruption, pain and additional work for the people that I most care about. Despite an intellectual understanding that there is nothing I could have done to avoid what has happened and the utter rejection of the concept of any ‘blame’ on anyone else had the situation been reversed, it’s impossible to avoid feelings of guilt, shame and responsibility for the impacts that the situation is now causing. The feelings of responsibility manifests itself (in me at least) as a need to try and coach those around me through my own illness, driven by a need to try and mitigate any pain that this situation is creating. Of course on an intellectual level I know this is (mostly) ridiculous; how am I expected to coach my children for example, through their own fathers death? In a way that would allow them to emerge the other side of that event completely grief free? It sounds ludicrous when articulated, but the desire to protect those around you, especially your own kids is overwhelming. I said ‘(mostly) ridiculous’ earlier because of course, particularly with the kids, there are steps you can take and behaviors you can exhibit which demonstrate what I guess you’d call ‘best practice’ for working through these scenarios. Fortunately for me, my wife, with expertise guidance and support from Macmillan and another charity called ‘Daisy’s Dream’ have been incredible at trying to create the best possible approach to this within our family. But this is making the best of a bad situation, not a solution that allows you to protect the kids from reality. I’m also trying, (or at the very least ‘trying to try’!) to demonstrate the right kind of behaviors that I believe will show to those I care about that I’m willing to put in the same sort of commitment to getting through this that they are all showing to me. It’s not easy though. I can see that it would be incredibly easy to become terribly narcissistic in this situation and allow the prospect of ‘near-term’ death to provide personal justification for basically just doing whatever you like! ‘I won’t the one to get up and start the day today, the wife should do that because I’m dying’ or ‘I’m not going to bother to respond to that message from a worried friend because I’m dying’ etc. I’m not saying that I succeeding in avoiding this narcissism completely, or that I’m claiming I’m demonstrating outstanding behavior in the way that I’ve responded to this experience, but I would surely like to. “I’m not saying I’m a good man, but I would be if I could”. The weeks between the crushing appointment at Oxford and my surgery date (scheduled for 5th June 2014) also manifested themselves in an odd triad as well. The first thing that happened was that I took a decision to reach out to a group of friends and work-mates and tell them what was happening to me. It wasn’t something that I did likely and what the sort of thing I would normally do. My sister gave me a great book which said that it was really important to illicit and take emotional support from an extended group of people. I figured that if I didn’t do it now, I never would do. The group was a selection of people had known for a long time and trusted implicitly and believed would have my best interests (and more importantly, the best interests of my family) to heart. Asking for help isn’t easy, but the lesson I learned from taking that leap of faith, both immediately when I did it and since then is that it was one of the best decisions I ever made. The response, which has snowballed as more friends have found out, has been unbelievable. Immensely powerful actually. The messages, texts, phone-calls and visits has been a life-line of epic proportions. The second notable activity during these ‘waiting weeks’ to the ‘big brain day’ was a personal revelation I had about my haircut. I could easily write an entire book about my own personal journey through the entirety of my life to find a haircut that didn’t look stupid on my head. Suffice to say that it’s not been an easy one. When I realized that I was going to have a pretty big portion of hair shaved off for the surgery, I was worried that it would upset the kids so decided to shave all my hair off (well, a ‘number 4’ at least) immediately and make it into a bit of fun with them so by the time the operation came around they would be used to it. My son has a ‘number 4’ at the barbers so he thought it was great - Dad and Son with the same haircut. I started at my own hair with the clippers, unsurprisingly it was a bit of a disaster. After a couple of advisory calls to her brothers my wife intervened and did a pretty decent job of it and it was at that moment I had a major epiphany - this new short haircut was undoubted the best haircut that I’ve ever had. Really by a very long way actually. I have always believed that I had a funny shaped head and therefore required a ‘style’ that would takeaway from that issue. The truth emerged though that my head was pretty normal looking and the new short hair looked fine. I figure I should be grateful that at 42 I finally found this out, but I couldn’t help consider the (probably) many of thousands of English pounds that I had previously squandered on my quest for a normal looking head. Go figure. Lastly in the run up to the surgery, it was the half-term week for the kids in the last week before the operation. The disruption, uncertainty and stress were starting to take their toll on my beautiful children so my wife and I spent a long time talking it through. We decided to do what we could to carefully plan the half-term to give them the best week we possibly could do and make them the focus rather than me. I was really starting to feel very ill and had to go to bed more and more so we created a ‘schedule’ which allowed us to do something each day with them. We planned in the fact that I would probably need to sleep for at least some of the day to get back on my feet. It was a beautiful week. The weather was lovely and we did a lot of walks in the country, saw family and eat out at their favorite cafe. It really helped to pull things back a bit and they were much happier by the end of the week. The ‘big day’ we planned to pull the stops out was to take them to the Natural History museum, helped by my father-in-law. It was a brilliant day, but it was also the day that I’ve felt the worst on this journey so far. By the time we got into the main entrance hall, I sat down under the Diplodocus I honestly didn’t think I was going to make it out of the building. I imagined myself crawling under the skeleton, expiring, and then being left to become a permanent part of the exhibit. You know, to provide a useful reference of scale was the size of the beast. As I thought it through it didn’t seem like such a bad way to go. My wife, sensing I was struggling offered me an arm and helped me to a quieter place so I could rest and get my shit together for the rest of the day. She bought me a sandwich and the feeling passed. Go here to the start of the journey. Go here for next blog entry. Go here for previous blog entry.