A major question appeared yesterday, one I thought was in the past now and that both of us had come to terms with in our own ways, my death sentence imposed by my health. Those who weren’t reading back in June 2013, well click this and it will take you back to the day I was diagnosed with COPD and the following days were I worked through the impact and my conclusions at the time. Oddly although we both knew that my PRMS was equally a slow death, it was one where we had no time line, no point given where things might end or ever a time line of how my future would pan out. My diagnosis with COPD couldn’t have been more different and for that reason our reactions were very different.
A diagnosis with something slow moving, like PRMS, is always going to be difficult, but you don’t look at it as a death sentence, it is more a life sentence. You are going to die sooner than you might have without it, but it doesn’t feel like you are dying, it just feels like you are being given a very unfair and unbelievable future that none of us want to face. I don’t know if it is our age difference or if it is because we are very different people, but I accepted it with much more ease than Adam did. I suspected then as I do now, that it had a lot to do with him losing his father when he was just 10, I was going to be the second person he loved, who was going to leave him far sooner than he could imagine or handle. But as the months and eventually years past and I was still here, not fit and healthy but here, I thought he had accepted that there was nothing we could do about it and we had to just enjoy the years we had together as much as we could. I stopped thinking about it, yes occasionally something would appear on the news or in some TV program that would trigger a moment of thought, even discussion and occasionally tears from both of us, but you can’t spend your entire life just waiting to die. Life goes on and we seemed to be together on the same page and working our way through our life together. Then came the COPD, it was very different for both of us, as it was a totally different situation, this time I was given 10 years to live if my now diagnosed Emphysema was to kill me, or sooner if my PRMS managed as it has been trying to ever since, to squeeze my lungs so tightly I couldn’t breath at all. Suddenly the whole ball game changed and everything had a totally different feel. We spent days talking and Adam seemed to accept what the doctors had said and what I had decided, that life would go on unchanged, other than making a few arrangements for when my time was clearly up. In fact, I actually believed that Adam had accepted it far better than he did my PRMS, well he was older and had already handled the original diagnosis, so once I saw normality returning, I didn’t give it a seconds thought, I was so wrong.
Last night I realized that I had got it wrong, our short week of talking after the diagnosis wasn’t enough and we both still have a lot to work our way through together. I was wrong in the way I handled it, I did what I thought was right, to work it out in my head and then write it all down, discuss it and close the book there, separate from everything else. I have always like most people departmentalised my life, each part of it separate from the next and not allowed to affect any more than they had to, any other aspect of life. It is undoubtedly a coping mechanism, but unlike many others, I always made space in my mind to think about things even if no one else knew I was, nothing was boxed that tightly that I couldn’t see into it, work on it and close the door again until the next time. Hence a lot of my posts, glimpses into each room that I have revisited and felt a need to reassess or adjust what was going on in there. What I didn’t realise was that I was heading forwards with all the things my health was doing to me, while Adam was still holding everything back at the points we last spoke about it and that he hadn’t been giving me his fully feeling about any of it, because he didn’t know how to without causing me more issues along with showing how it really was hurting him. As so often is the way in life, we started to talk about it all far to late in the day, I was too tired and at the point where my body was shutting me down and I just couldn’t stay up long enough to really talk about anything with any logic or feeling. It isn’t just one of those things people say, men are not as good as women at dealing with emotions or about talking about them, I found outlets along my side of life, through friends at first then through writing and I hadn’t been talking to the person who I really should have been, Adam. I thought that I was protecting him, something we women are bad at, we always think we have to protect those we love, when in fact we aren’t protecting them, we are pushing them out.
Being given a ticking clock to live with isn’t a case of trying to not hear the tick, or listening to it every second of every day. It is like that heirloom grandfather clock in the hall that you don’t hear when the world is awake and noisy, yet the second the house is quite and you want to sleep, that tick is so loud that you want to take an axe and destroy it, but you can’t. When you do hear the tick it can drive you into places that you normally wouldn’t go and when you are there you want nothing more than to reach out, but you fight it over and over as you don’t want to hurt the person you are looking to for comfort, you believe they are handling it all so well. When both of you play that game, well the results are bound to get messy. This talking game we started last week, is showing up flaws in both our methods and showing me more and more that neither of us can be strong for the other, when neither of us have quite fully dealt with our own feelings, feelings we should have shared. I honestly thought that the time would arrive driven by my health when we would talk again, that that was the normal way people deal with these things, no one had ever shown me a way of doing it differently or a need for anything else, it appears that other things has brought the time around sooner than I thought.
It’s hard for anyone dealing with the unknown, even harder when it is something people never talk about openly or they don’t have people who have been through the same to turn to. I have never seen it, or like anyone else been taught how to die or how to help someone else who loves you to go through all that this process brings with it. It is on one level the worst thing anyone can face and on the other the greatest adventure anyone ever goes on, as its the only one that no one can show you what lies ahead or how to behave along the way.
Please read my blog from 2 years ago today – 27/01/13 – A loss of trust