TREASURES OF THE DARKNESS. My Story.

I HAVE THREATENED TO DO THIS FOR A LONG TIME AND TODAY WAS AS GOOD A DAY AS  ANY.  INSTEAD OF CLOSING MY BLOG DOWN I HAVE BEEN INSPIRED TO DO  THIS.

 

I have often heard people say, “There is life before cancer and life after cancer.” I have never heard a truer word. Even for those who recover, and return to “normal” life, there is often a residue of doubt and anxiety. But for some of us, “normal” never happens again. That day when you are told you have cancer is probably the most devastating one in your life. For some, it is expected, as they had some inkling beforehand, but for others it is a complete shock. And for some of those, they will hear the words also, “You may die.” Well, we all know that we are going to die at some point, but perhaps we do not expect it to be cancer that kills us. Certainly not if we are not old at the time of diagnosis. In my case, it did not kill me, though it was certainly expected to, by the medical profession. I am one of their “success” stories. Yet, as someone once said to me about how I have been left by the aggressive chemotherapy, “They fucked you up didn’t they. I mean, they REALLY fucked you up.” I had to agree, he was actually right.

It is now as if a curtain has been drawn over my life. Behind the curtain is the life I once knew, and the person who once was, and here, in this new place beyond the curtain is a most different person. A person who is blind, who cannot walk meaning that she has to use a wheelchair (self propelled of COURSE – I HAVE to maintain SOME level of personal autonomy, even if I DO collide with many lamp posts!) A person who cannot dress or feed herself. Added to the blindness and inability to walk, is the peripheral  polyneuropathy. I know – what the HELL is that? I asked the same question, and it is where the nerves of your body are affected, meaning that your motor nerves may no longer work, making it that you can no longer walk . Additionally, your hands become clumsy and unable to feel or grasp things, so you drop them. A bit perplexing when it is a glass of lemonade or something, as it usually is with me. I cannot even begin to count the number of times my lemonade has ended up on the floor! All for my poor husband to have to try and mop up. Not only are my hands clumsy in that way, but also, I try to send them one way, but they go another. This can be most disconcerting! I am constantly knocking things off my bedside cabinet! Then of course, my husband has to try and find everything! AND, to make matters even worse, my lungs have been badly damaged by the chemotherapy. So badly damaged in fact that upon going to the bathroom in a morning, I return to my bed gasping for breath. My oxygen levels will have fallen dangerously low, and all that I can do at that point is lie on the bed until things return to normal, which usually takes about a quarter of an hour. On a bad day it can be half an hour.

And so, yes, very definitely, for me, there was life before cancer and there is now life after cancer. I went from being a walker, cyclist, swimmer, and many more things, in a flash. Or so it seemed. When I took the chemotherapy, I had no idea at all that it would do this to me. No one told me about the possible effects of the chemotherapy, but to be honest, even if they had, I would probably have gone for it, because it was a case of either possibly living or, to put it starkly, dying. But I have to admit that I did not expect THIS. And by that, I mean this level of disability, added to which there is constant pain which actually exhausts me. And to be honest, I have to say that there are days when I do not want to live any more. I have days of deep, black depression. Days when I feel I can cope no longer.

In speaking of my husband, I have to say that he too is sick. But not to the same level as me. He has post polio syndrome, and he too is wheelchair bound, though he can walk on crutches occasionally. He falls regularly, however, which means that we have a very precarious existence. It is actually quite frightening. I have to try not to think about it or I would go mad. What is that thing about living in the present moment? Yes, well, easier said than done, but we have to try. So, despite him being my Carer ( a word which I utterly detest by the way, since he is my HUSBAND, which does or should denote caring, but it is an intimate and close relationship which CANNOT be defined in these clinical and sociological terms), he struggles with his own health too. Being diabetic also presents its own challenges.

How do we get through? How do we live life this side of the curtain? Well, I am going to try and give you a glimmer of what it is like in telling my story. And “glimmer” is a very apt word, because there IS light. Even on the darkest and the blackest of days, there IS a glimmer of light, even though it cannot always be seen. In fact, come to think of it, my life is really FLOODED with light. The darkness has a light all of its own. It is a dazzling darkness, and someone who wrote of this was called Gregory of Nyssa, and he wrote of this many many years ago. Over a thousand years ago actually. In fact, there are many treasures to be found in the darkness, and maybe I have not discovered them all yet.

And so, I tell my story. Draw up a chair.