Today I have felt not just low but quite scared. It was triggered by my eyegaze system getting a virus. It's a nasty one that redirects website searches to bogus sites and prevents access to antivirus websites or the installation of any antivirus software. I have successfully removed similar viruses on other computers using eyegaze remote control but attempting it on the eyegaze system itself is highly risky because the process of attempting the virus removal could knock out the eyegaze control, rendering the system unusable and leaving me locked in with no method of communication or environmental control. Despite this I started running some utilities to identity and remove the virus. Initially everything went smoothly, then a reboot was required and the eyegaze didn't restart.
A feeling of panic washed over me, that cold wave that you feel when the policeman holding a speed gun steps out in the road and flags you down. After some thought and managing to get my carer to connect a mouse, she managed to interpret my grunts, clicked on a few things and eyegaze functionality was recovered. The feeling of relief was immense, the feeling you get when you realise the policeman is pointing at the car behind you! But my euphoria was short lived when I put what had just happened into perspective. Yes, the demise of my eyegaze system is somewhat more catastrophic than a similar fate befalling your average PC, but worse things can happen. Being done for speeding isn't really that serious if you're about to drive over a cliff.
Having had over a year of progression stability I have allowed myself to succumb to a state of denial. Writing about ventilation and end of life issues is one thing, accepting that they ARE going to happen is very different and I am not sure I have yet. And if I felt panicked about the computer, how will I cope when the cliff edge comes into view.
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About Me
- Steve Evans
- OK, should have done this two years ago when I was first diagnosed with Motor Neurone Disease but better late than never. I thought it would be a good way of keeping anyone who was interested up to date with what's going on with us. Communication is getting harder and whilst I want to keep texting, emailing and chatting to everybody this seemed a good way of saying more things to more people more easily. Typing is a slow process (this has taken 20 minutes so far) so a once to many approach seemed good. I hope to keep it up to date with various stuff including whinges about things MND related as despite trying to "keep positive" it does affect (in a generally f**ks it up kinda way)almost everything I do! For those of you who really want to, you can check out my "status" on my web link. Finally, PLEASE leave comments, even if brief as its the only way I know its being read!!
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3 comments:
I can't even deal with a virus on my own computer - it goes straight to the computer repair shop- so how you sort yours out with the eyegaze and then cope with the eyegaze itself is too amazing. Life is so precious and everyday we live is a gift. None of us know what tomorrow will bring, we only know that one day will be our last. I think of you always and know that you are one of the brave and good in this world. Christine
I know how paniced I feel when something goes wrong with my computer....and I have you to ask for advice. And you are, and have always been, so calm about everything that goes wrong that I know you'll head me in the right direction. So it must have been really scary to be faced with the prospect of losing your means of communication...and so frustrating for you because you are such a whizz with computers. I'm glad you got it sorted Steve. Caroline
Wow Steve, that is a powerful last statement! I will be at peace when the cliff edge comes into view. I actually thought for six months I had ALS as well, so I had time to sort out my feelings about death. It turned out to be BSF (Benign Fasciculation Syndrome) which is not fatal but has the fasciculations like ALS. The reason I have peace is because I have prayed and asked the Lord into my heart to be my Lord and Savior. So coming to the cliff edge does not scare me, because I will be in Heaven. That’s powerful:)
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