How Are You?
Saturday, December 18, 2004
I was talking to a friend today about other peoples reactions or lackof or some area of how that affects me at any given time. And I don't expect anyone to be able to react of give the best they got one hundred per cent of the time. We all have blips and bends in the road, that make our journey through life difficult. And often we feel so over-whelmed by our own difficulty, we can become blind or hardened to other peoples. When you feel you are drowning in a stormy sea, you just hold on, and do the best that you and those you love who are closest to you, survive in one piece.
We have a quiz proggramme of long standing here in the U.K called "Master mind" and when the contestant gets asked a question and they don't know they answer they are to always reply "pass" and then go onto the next question, as it saves time and confusion in trying to answer something they either can't or have adequate knowledge to fumble around in the recesses of their mind trying to find a clue or a hook that will get them on the right road.
And I am one hundred per cent sick by most peoples standards one hundred per cent of the time. I have found great difficulty when people ask me by telephone or in person, "How are you?" what do you say? If its a good day, do you say i'm okay, I'm fine, doing better. When you know very well by the sheer changeability of this condition that can literally be hour by hour, and you are afraid if you make it sound too hopeful they will then stop praying for you cos they think you may not need it, do you make a joke, or do you get irritated by the question at all. I have had over the last three years at some point a mixture of a combination of all three reactions. I dislike people asking me "how are you" multiple times a day. Part of that is you wonder (perhaps unfairly) do they think there's going to be a miracle cure? and another part of that is, you want them to see you and treat you not like someone who is always sick, but like the person that at least on the inside you still are.
My closest friend in this country telephones, and he will say "how are you?" at the beginning of the conversation, and I say "pass" like in Mastermind. And we go onto the next question or whatever. It seems to work and gives us both the chance to express what we want. He in showing his concern, me in not wanting to think about or have to put into words very much about how I maybe.
And since I am stuck idoors alot, alot of my conversations are online. Without the friendships that virrtual life gives life would be much poorer quality. And was talking some with someone about this today at least one area of it. And they said about how cos they don't see with their eyes but only virtually see its hard sometimes for them to undertand the reality or degree of suffering I may be experiencing. And I understand this. And on the other spectrum, you get people who visit and they can see how ill you are by seeing with their eyes and they want you to go to bed . Till when? till you are better? Well one may as well go to bed for the duration in that case.
My responses to people in any given climate of this illness has been a huge learning curve. I've felt pressured at times, whre maye I shouldn't have. And I wondered if expectations were there, that I felt unreasonable. Someone who visited yesterday, put something before me that I knew I'd messed up already, a week or two ago, and the responding to people in this situation when its such a drastic change is not something that one just knows how to do, and it doesn't come naturally. That in itself is a learing curve. And often you give over qualified explanations and stuff of why something is or isnt, feeling sure they must think you are making it up if you don't, and yet this responding as i see more when I have not got it right, is something that has started to become clearer the last week or two. As my often trying to compensate and end up o ver compensating to not try and give offense, suchas an invite to the cinema, you feel sure if you just say sorry I can't make it right now, the person may feel rejected or think you don't want to be with them, so you end up saying all kinds of reasons why it ain't possible, and then realize they were only wanting to make you feel included and not left out, even tho in reality tey knew it was not likely possible for you to go.
If people have an accident and break there back, and they are permanently disabled through it. Or disabeld through various of the well known conditions. Counselling to make the adjustment will be on hand. There's always someone who will have been there before. And yet a rare or undisagnosed illness this at least in my experience is not the same. And yet ones life has maybe changed even more drastically than it would have if you'd have broken ones back and paralyzed.
people have commented to me that the form this illness takes is on the most unnatrual kind. Sleep and food both being normal human functions that most folks can take for granted and yet both scarce to me in any real way. And sleep can and should be a shelter and a time to recover ones strength. I wake up feeling like have been run over by a steam roller and conscious that while asleep all types of brain stuff had taken place, often with several hours from the night before missing from my memory, and it has proved a dangerous place to be rather than a shelter.
So yes, it takes a while to know how to respond to different people in different situations while at the same time learning to know how I respond to to any given day, and surviing it intact or at least with no worsening.
I don't expect people to be perfick in how they respond at any given time. I fail them often in how I respond to there responses, as I know they are doing the best they can and the best they know how. And don't think there's any one set of rules for being or doing right. This illness of mine, is not just my learning curve, as the people I am closest too have learned and are doing so over time, in what they can do or say at any given time to be helpful and supportive. Theres no right or wrong way to neccessarily approach it. I think like in most aspects of most friendships, that whatever it is that one struggling with in a frienship or relationship, you just have to realize, we are not perfect people, any of us, and we will get it wrong sometimes, but there will be progress on all sides along the way. And that progress and growth in any aspect of any relationship, and a continuing desire to further the progress, is what keeps teh relationships, vibrant and alive and despite all the knocks a long the way, what will make it survive.
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Our Beloved Leader Tony Blair (doing his best impersonation of Adolf) 
and by the end of three days of this happening and doing two hard drive formats and it still happening, felt much the frustration of the person in the vdo by then. i finally got rid of it, by formatting my hard drive (yet again) and before installing anything else, putting both a fire wall and anti spyware on. As it was apparently spyware which caused this particular problem and infected me with the trojan. but yes, I can sympathise and empathise with the guy in the vdo.
