Yesterday, I received a comment that ended with the line “I’m just sorry, nothing anyone can do or say will help.” It’s a line that holds all the things that we as people who have chronically illness, hear the most but feel to a much greater degree than anyone who ever says it. I’m not implying that the person who wrote it didn’t mean it, but when I read it, I felt what I always feel, a desire to scream. In a way, it actually summed up part of what I wrote yesterday quite well, that situation where it all feels futile, but we all know what we will do is be politely nod our heads, obediently do as we are told, then walk away, inside screaming. If there is one thing that I hold onto, is the fact that my illness isn’t just physical, but mental as well. My greatest wish has always been that my brain will degenerate at the end, faster than my body does. I don’t want to be trapped the other way around and I have said that from day one. I have always found it somewhat ironic, that two of the things that I prize greatly, that have gained me a living and driven my life, my intelligence and analytical nature, were actually going to be the thing that would cause me the most pain. I have spent so many years self-educating, improving my knowledge about everything I could, but it was going to turn on me and make my life harder. I hate to say this, but if I were as thick as two short planks, well this illness, would be a completely different story.
I have spoke to so enough doctors over the years, to know that one of the things they are skilled at is judging just how intelligent their patients really are. I remember quite clearly, the day that I was given my full diagnosis. The doctor who was sat across the desk from Adam and I was younger than me, and he didn’t look me in the eye once when he read out the full list of all the conditions that had been confirmed over the years. He didn’t even stop long enough to take air, very much giving me the feeling that I was allowed to interrupt or question, he just wanted to deliver the news. He actually reminded me greatly of a news reader, but they although miles away, at least try to engage their audience by looking down the camera, he just sat there reading, eventually reaching the punchline, my new condition. When he did eventually come up for air and ask the question “Do you have any questions?” he did it whilst giving the briefest of glances at both of us. Of course we didn’t have any questions, we hadn’t been given time to think, but that was just what he wanted. He stood up almost immediately and announced that I would get a letter soon to see my consultant and that a copy of what he had just read would be sent to us. All said as he hastened us out of his room. As we reached the door, finally the words I had been waiting for appeared, “I’m sorry, there is little we can do for you.” I left feeling that he knew that if he gave me a second longer to think, that I would have a lot to say and a lot more to ask, but his goal was to get this over and done with, to remove me before I could go head to head with him. It wasn’t the first, nor the last time, that I have felt a doctor running from me. Every diagnosis I have ever had, has ended with those words, not always exactly the same, but close enough. What on earth does that word “Sorry” really mean and who on earth are they sorry for, me or themselves, for having been put in the position of doing this again to someone else, or for the fact that their profession has come up short, yet again.
Being ill with a brain that is intelligent, but has been hampered by a condition that has taken more than just the edge off it, is more than annoying. Doctors these days are in luck, the brain still has all its ability, just not when it’s actually needed. In the past, I would have had that doctor verbally pinned up against the wall. He would have gone nowhere until I had asked every question that took the next month to appear. This brain of mine no longer does what it once did, that doesn’t mean that it doesn’t do it at all. In here, there is all the intelligence that it ever held, it’s just shrouded in a mist that is hard to penetrate. That scares me because I know what is happening to me, I know what will happen to me and know all the options. Once that had a purpose, once it was the thing that I thrived on, now, it just scares me. The writer of that comment was right, there is one thing to be sorry for, she also wrote, “Sorry that you’re as smart as you are to be aware of every passing moment and the risks of different care options”. For once, I can say that my mother was right, I am too smart for my own good. It’s a rare occasion that she was ever right, but this time, she nailed it, I am too smart for my own good, I do know too much and I so wish that I didn’t. I never understood that saying “Ignorance is bliss”, it used to really annoy me that anyone could even think such a thing, how could ignorance be anything, other than a waste of a person, now I understand.
All my life my brain has been this sponge for information, drawing in everything it could from any source it could find. School bored me, it was too slow, too boring and too full of rules. Not having a qualification to my name, never held me back for a second, I could always prove myself, I just had to get through the door and once there, I did my stuff. My brain was filled with information that I never understood how others possibly couldn’t know. I knew, where from I wasn’t sure, but I knew, and I had a terrible habit of being right. I have lost more friends in my life than I can count, just because I spoke my mind and delivered correct information, I remember it even losing me one job. Bosses don’t like being told they’re wrong, even when they are and it’s even worse when it’s publically proven. This brain of mine has got me into trouble, I know that, but now it is my turn to be it’s victim, my turn to know what it’s like to be faced with a know-it-all.
When I was first diagnosed, I remember having a conversation with Adam, where I told him, that I believed with all of me, that the best thing to do near the end was to hasten its arrival. He was totally horrified, there is no other name for it, his face and his voice showed clearly the depth of his feelings. We had only been married 2 years when the news arrived that I had PRMS and that our shared life was going to be even shorter than nature would allow. With the age difference, it didn’t take a genius to work out that the odds of him outliving me were high, they had just got higher. That fact didn’t escape him, but the idea that I was proposing that I wanted to take that time into my hands, horrified him. I don’t know when exactly he changed his mind, whether it was the first, second or 100th time that the words, “I’m sorry, there is nothing anyone can do for you” and the reality of my life became clear, but it changed. I knew it would. I knew because he is a caring and loving person, and I knew because he loved me. I defy anyone to sit back and watch their partner slowly diminishing in front of them. Changing from a fit and agile person who loved to be active, who walked everywhere, hardly sat still for more than a minute if something needed to be done. Watching them change almost daily, unable to leave their home unless carried down the stairs. Unable to even move around without the aid of a wheelchair and constantly in pain. Seeing them clearly becoming more and more distressed by their reality, I challenge them to not change their mind. He has watched my constant frustration at what my body has done to me, but more than that, he has also witnessed my frustration at what my mind has already done to me.
When you know that the information you require is without a shadow of a doubt, there in your mind, but you can’t find it, trust me there is nothing more frustrating. We have all been in that position where the name of something or someone is on the tip of our tongue, but we can’t find it. Well, imagine that happening at the start, middle and end of every 5th sentence. Imagine that happening in the midst of your action, you know you were going somewhere, to do something, but suddenly you don’t, not occasionally, but regularly. Imagine entering a room you have seen daily for years, but now you don’t even know where you are. Imagine your brain, just abandoning you, making a fool of you, deserting you publically and privately, then turning on you, that is how it feels when brain damage takes hold. You’re scared, really scared, not in any way you have ever felt before and not one that words describe with ease, but it holds one final trick, it’s still switched on. All that information, all that knowledge that you have acquired, is still there and it’s not going to let you forget any of it. You are aware, you are totally aware of every pain, of every change, and what it means, and all you really want is to shut it up. That is where I am. I’m trapped in a body that is closing down, with a brain that won’t show itself when needed and has given up on the mundane but takes joy, in torturing me with the reality of my situation. My one blessing is that I still find enough joy in life to keep me happy, but yes, I do fear my future. One side or the other of this illness will win. One side will be the stronger, either I will still have a body, without a brain, or vice versa. Which is worse, well for me without a doubt, it would be the one I picked even before I felt the horrors ahead. If this illness has one once of mercy, it will let my brain die faster, I couldn’t bear to be trapped inside, unable to be understood.
“Sorry”, sorry for who? I am not sorry for me, or sorry for what has happened to me. I am sorry for Adam, for he is the person who really suffers, he sees every single change, he has to live my life, not his. I am sorry for my daughter, as she is losing her mother, bit by bit. I am sorry for all those out there stuck in exactly the same position as me. I am sorry for the doctors, who do all that they can, but are caught for now having to say many times a day, “I’m sorry we can’t help you”, but I’m not sorry for me. I have had a good life, I have been lucky to find the one person in this world who I was meant to be with. I am lucky that I am loved so deeply. I’m not sorry for me, that I am dying, or the way that it is happening, what is meant to be, is meant to be. If it hadn’t happened to me, I wouldn’t have discovered a skill I never knew I had and one that I love, to be able to write. I’m not sorry that I have discovered that my belief in people has been proved to be right, this world is filled with people who care about people. Don’t be sorry for me, for so far, there is nothing to be sorry for.
Please read my blog from 2 years ago today – 29/10/2013 – Understand changes everything
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