The ogre in my life

I found myself once again shuffling what had to be done and not doing all of it, despite there being more than enough time. Not too surprisingly the job that never got done, was the one that I hated the most, picking up the phone and talking to people. It doesn’t seem to matter whether the reason for the call is social or essential, I will avoid it like the plague. It’s so odd this fear I have developed of the phone and it is a fear, I honestly don’t want to even touch the thing if Adam is here to deal with it. Many of my working years were spent doing just that talking on the phone. I worked in Telesales for quite a while and I am still proud of the fact that I was really good at it, but I was good because I chatted with the people I spoke to rather than reading a script to them. In fact, communication has been my main work skill that traveled from job to job with me until I started to slur and stutter. I know it isn’t that alone that make me do anything but pick up the handset. I honestly feel scared now by the muddle that I know I am capable of creating without even trying these days. The mess that I jokingly call my brain is something I don’t even think about when I am talking with Adam. I can talk about anything with him, bring in a stranger and I am demolished into a verbal muddle. Strangers don’t have the patience to just go slowly with me, they all do the same thing, they try to fill in the blanks that I get stuck in and usually get it wrong. I am suddenly faced with someone who is talking at me about something I hadn’t called about and it becomes really hard for me to hold onto what I called to say and to shut them up long enough to get my question out and hopefully answered. The phone has to be my worst nightmare these days and I will do anything that I can to avoid it, even when that call could or is to my own advantage or vital to my health and happiness.

It’s so hard for those who don’t live with a brain and/or speech problems to do what they all know is the right thing, to stay quiet and just listen to the person rather than talk for them. Human nature seems to be programmed to be either “helpful” or impatient, the actual ability to deal with the person, rather than our own time, is low on our personal scales. I used to be as guilty until I had a friend who just like I am now, would become locked into a word and unable to finish a sentence. It was my first taster of just how something that is actually a tiny issue can take over a person life and even their very personality. I learned it when I was young enough to take it on through my life, the thing I had learned that most people miss, is to listen to the person, not their words. I know that sounds odd but what I mean by it is that every person talks in a different way, different accents and with different issues. When you listen to the person, you are really listening, not skipping ahead or past them and it’s a skill you have to practice with everyone, that way you never get it wrong. Rather than you governing the pace and subject, you have to respect theirs and find the balance between you.

It is so frustrating when someone else finishes what you are saying for you, especially when they get it wrong. When you are face to face with someone you can make it clear that you need help to find the word or that you want to be left to find it yourself. I have developed some facial and hand signals that Adam now knows, so I can show him if or if not I want help. They are nothing elaborate and I am sure that even a stranger would understand them, but the phone means that you can’t be seen. It means the person on the other end, especially if they are at work and just want to get you off the phone so they can do everything else, doesn’t have the slightest idea of the issues you live with. We might as well be on different planets and speaking different languages as our ability to fully understand a person we can’t see, is zero. Human communication is actually far more about body language than the words we say, so the phone is alien to us anyway. Add in a speech impediment and a dose of brain damage and that phone becomes an ogre.

Just as I have handed over the job of opening all my mail to Adam, where and when it is possible for him to make a call for me, I will ask him to do so. The problem with this one is that it involves my doctor and my medications, they are things that I don’t know if they would accept a call from him on my behalf. We are still far from the edge of him having to do everything for me, the point when we would clearly have to inform all the relevant people that he has my authority to do these things on my behalf. Everything in life seems to have these grey areas, the points when things aren’t bad enough for the full power of attorny isn’t required, but the option for help isn’t available. The rules on all these things are so black and white but the reality is that life never is. The unfortunate things are that it takes some kind of crisis to highlight when that point has been reached and unless it is sorted out and ready to go, well you are stuck. So OK, we didn’t need a legal status change for Adam to open my mail, but it took my finding myself totally distressed by what in reality was nothing more than my brain getting it all so wrong. What crisis has to occur to prove that I need help with the next thing or the one after that? Why does life have to fall into the abyss before there is a safety net there to assist if not totally catch us?

I suspect that there are millions of people out there right now in this very situation and every single one of us is doing the same thing. Pushing it to the back of our minds and just hoping that it will all be OK for a long time to come. The danger is, that not one of us can be sure that the abyss isn’t going to open up in front of us in the next second. Chronic illness is scary, it is a monster that has more arms and more legs than any of us want to think about. To me, being independent is important, but there are days, situations and events that at that second, I don’t have the ability to deal with. The buzz of facing a challenge and achieving isn’t big enough any longer to out shadow the fear of finding myself flat on my face. Right now I am in nowhere land, not disabled enough to just hand every aspect of my life into the hands of others, but definitely in need of a strong guiding hand.

Read my blog from 2 years ago today – 30/06/13 – Stifled by perception

I now know that Teressa and John will be here on Tuesday and Thursday, I’m not clear yet at what time as she phoned yesterday afternoon when I was asleep and, of course, there was no set time. I suppose it is all rather vague right at that second as they are staying with friends and what they are doing when will also have to be part of the equation. So I am just forewarn you all that my posts may be a little-broken or…….

2 thoughts on “The ogre in my life

  1. Every time I read through your blog I am amazed at your fortitude and clarity of explanation of what you have to go through.

    You are an inspiration to many I would vouch and all the best to you and Adam.

    Kindest regards





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