Subject: hello
Date: Tue, 19 Oct 2004 18:36:59 +0930
I am doing an assignment on the Human body for biology, and our present
subject is illnesses. i choose to do Cruetzfeldt-Jakob Disease and i came
across your site on the net and realised u suffer from it (full gallery reference)
I was wondering if you could tell me something about what happens and what it
feels like to live with it?
Thankyou
Alicia
Subject: Re: hello
Date: Tue, 19 Oct 2004 19:40:55 +0100
I'm really glad you have decided to contact me in order to participate in your assignment. As you can see by that photo I suffer from time to time strange behaviour and have to be hold as if I was being epileptic due to random movements and spasms. The problem with this disease is that it is usually found only in people over 50 years and can be diagnosed correctly only with a biopsia of the brain, which obviously is not very good for a living person.
For this reason no doctor has actually said I suffer from this disease. Also because it tends to lead quickly to dementia, which apparently I haven't experienced yet. However, no doctor has diagnosed any other well known illness which could explain this behaviour. Basically they have no clue, and going from one to another leads to totally different diagnostics.
In the last year my feelings have changed from gradual changes in mood to very quick alterations which sometimes happen even during a single day. I have to use a PDA (Personal Digital Assistant) to track of my own thoughts as I very easily forget things in the past 5 minutes. On the other hand my memory is quite random in terms of timespan, and I happen to remember perfectly situations which happened years ago, yet I have trouble recognising on the street the neighbours who live above my flat. This is very embarassing when people ask me what I had for lunch the day before.
PDAs, or computers for the matter, help me a great deal of doing a life of a normal person. The only difference is that I really depend on them and I feel quite disoriented and unsure of myself when I'm not near any of these devices. I never know when I will need them to remind me what I have to do. But other than that it's ok.
Due to my radical humor changes I've tried to develop a very high resistance to express my feelings, especially in terms of body language. The downside of this is that I'm considered not very talkative. And given my dependence on technical devices people see me as somebody with a serious computer addiction.
Talking about humor changes, your mail has happened to make me very happy. For the moment I believe again that this is a world where people care about each other. I am even inclined to write and publish this thoughts on the same web page you have visited, to share with the rest of the world a little bit of light in all this space of gloomy darkness. In fact, it would really be fantastic if you allowed me to reproduce this conversation as is, and send me a picture of yourself so I can proudly show that people who care about others are not urban legends and still exist.
Sincerely, from the United Kingdom.
Subject: Thankyou
Date: Wed, 20 Oct 2004 15:34:01 +0930
I have just finished school for the day (yr 11 high school) and i came on here and saw the email from you i was so excited to see u had writin back (i honestly thought it would have been a while till i get a reply). Before anything else, how was your day today?
I not only contacted you to help with the assignment. I contacted you to see a different view of it and to let you know that youre site was very touching and it touched my deep down to hear what you have to say and that there are people here that wanna help and listen.
I have done quite a bit of research on this and it is a very interesting illness that i am interested to learn about. i would like to thank you for sharing your story with me.
If you dont mind me asking how old are you and how long have you had this illness for? These are some of the questions) how does the illness affect the lifestyle of your family? and does it make much of 'hazard' in your life to what your life could be without it?
By the way its ok i cant even remember what i ate for lunch yesterday, so its all cool. lol
I am really glad that i have made a difference to your mood and that you know there are always people out there that will help you and listen to your stories.
Its fine that you publish this onto your website, it would actaully
be very flatering if you did. Im trying to find a picture of myself
that would be decent enough to send to you. I have a few that ill
send, but i may have a better one being developed soon.
Thankyou,
Alicia
Subject: Re: Thankyou
Date: Wed, 20 Oct 2004 22:30:11 +0100
HelloIt was good, thank you. Especially because just before going to work I had a quick glance at your mail and virtually lit from the ground up with excitement. I think we are lucky that our lives have a timeshift of about 10 to 12 hours, so instead of waiting two or three days our sleeping time overlaps with the other's daytime. Of course, sometimes other things in real life need attention and then I might not check email for days.
I have just finished school for the day (yr 11 high school) and i came on here and saw the email from you i was so excited to see u had writin back (i honestly thought it would have been a while till i get a reply). Before anything else, how was your day today?
If you dont mind me asking how old are you and how long have you had this illness for?I was born in 1980. As for when did I start behaving not normally, I believe it was about the age of 16. At the moment I didn't see anything wrong with me, just as what happens to many people slowly diving into alcohol and other drugs. A random behaviour here, some incoherencies there.
Previous to that I would experience tough times where I would be ill for days with symptomps changing from day to day. I believe the worst time for this happened around the age of 12. As said before, this is one of those things I really don't remember. In fact, I can't even remember the clinic where I would see the doctors. But my parents tell me I would know them so much I would call them by their real names instead of their medical titles.
Probably the worst years were around 2000. Even though by that time I had most of my physycal reactions under control, I really felt socially inept. I found out later that at times I would stare blankly through the window or at my own notebook in class, and mumble things like: "I don't need to be human, I don't want to be human. I want to be a machine. No broken feelings."
I'm lucky that physical annoyances don't happen to me any more as often as when they took the picture I have on my web (when I was about 16 or 17 yeas old). I have also found recently that doing periodical physical activity like running in the mornings has practically removed any odd feelings I had about my own body.
how does the illness affect the lifestyle of your family?Luckily they reacted very well and anticipated everything with incredible skill. Their first right choice was to buy a computer for me to play with friends. This reduced the amount of time I would spend outside, out of the control and surveillance of my parents. At home I never felt alone. I can remember I would lay under the bed with my neighbour firing at imaginary enemies in a violent war, as probably many children if the same age would do to fill their afternoons.
I had a few unsuccessful tries at sport, but later in high school I dropped this habit and turned every year more into computers, being able to contact other people and share thoughts through email. That basically kept me sane from thinking I was alone, because I always could (and still can) communicate with them, wherever they are. I've personally found that people seem to share more feelings over non personal communication methods, just like we are doing right know.
I'm afraid in person we would have probably never ever met. Me, probably busy trying to concentrate on where I'm going to avoid being lost and looking down. You, surely chatting happily with other friends in your age, maybe going to the cinema or just enjoying a nice afternoon. Our lives would cross in the blink of an eye and never meet again in a lifetime. And yet we can share now emotions most people are afraid of communicating.
and does it make much of 'hazard' in your life to what your life could be without it?There's not much hazard to my current lifestyle because from the beginning it has been tailored to be a sedentary environment in which I would not need much physical activity and always be close to somebody else. The second right choice of my parents was to keep my interest in computers alive, even though around the age of 13 or 14 I wouldn't even touch it (though I can't remember why, those years seem faded out like a sunset in the distance).
After reviving my interest in computers they also encouraged me to go to university and finish a degree in computer science. I have to say I never liked university. It was fun, there was a lot of people, and I had good times with them, even though after five years my social disabilities only allowed me to really know a handful of the hundreds I had the chance to be with.
But I disliked very much the fact that at least the university I was in, approached the degree in a very commercial like fashion. Instead of teaching us about interesting things, the courses were usually boring, repeated stuff already obsolete by the time it would reach the pupils. With the exception of a few teachers, most of them didn't really care about what they were talking about, and you could as well stare through the window without them minding your attitude.
I couldn't break the promise and love of my parents, so I struggled through as I could, and even though I never got good marks and used to need several tries with difficult exams, passing year after year was the best I could give my family in exchange for their support.
Its fine that you publish this onto your website, it would actaully be very flatering if you did. Im trying to find a picture of myself that would be decent enough to send to you. I have a few that ill send, but i may have a better one being developed soon.Excellent! I think I can find some time during the weekend to change the web page. Don't worry too much about the quality of the pictures. After all, I can't say the photos of me are great, as you have already witnessed. One thing which I have learnt is that the people who really care ignore exterior outlook. In such a way, the photos I have on my web, I use them as a means of veryfing the type of people I meet.
If they usually laugh and generally consider them funny, it's usually ok. They are not good photos, their purpose is to show them how awful externally I could look. If they can accept that with a smile, they are good people, because they don't need perfect people around them. On the other hand, if they react in a somewhat disturbed way and just look away, I know they are not to be trusted, and usually after this they will distantiate themselves.
It's for this reason I feel you must be a very wonderful person. Barring the obvious distance and age difference, I would have really liked to have a friend like you during my years in school. Somebody I could really trust, no matter how awkward my behaviour would be.
Subject: Thankyou
Date: Thu, 21 Oct 2004 22:23:52 +0930
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Alicia Blam, a very wonderful person.
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Just got back from work now. i was quickly checking this so i could save em because i couldnt access my email during the day. Which is a bumma, so if u could send ur next emails to xxxxxxxxx itd be great, then i can write back sooner. So ur prob sleeping like a baby in bed right now, hehe.
I would like to thankyou for being so polite and such a great person. i am really glad i came across ur site. U have helped greatly and i really appreciate it, you are a nice person and i really hope you get beta. I do hope we still stay in contact though and disscus other things than that, it would be nice to get to know you. If u like i can send u my assignment when i have finished, if u want to c it.
I think that your pictures are rather cute, ;) and you have a very good theory
about what people think when they see photos etc. i think i may try that.
Anyways, i gota go now and my photo is attached, i am the third on the left
(the girl in the white top)
Hope to hear from you sometime soon
Alicia
Subject: Re: Thankyou
Date: Fri, 22 Oct 2004 08:20:45 +0100
Just got back from work now. i was quickly checking this so i could save em because i couldnt access my email during the day. Which is a bumma, so if u could send ur next emails to xxxxxxxxx itd be great, then i can write back sooner.Sure, no problem. There are no hurries though, I kind of like the idea that even when I receive mail from somebody I don't have to answer it straight away. I can wait some hours or maybe days to get into the correct mood to get the best of me.
I do hope we still stay in contact though and disscus other things than that, it would be nice to get to know you.Yes. I'm open to any other questions you might have about me. Or anything you would like to tell me about your life, your problems and future plans, like, what would you like to do after you finish your studies, whether you like travelling, that sort of stuff.
If u like i can send u my assignment when i have finished, if u want to c it.That would be fun. Thanks for your work!
Anyways, i gota go now and my photo is attached, i am the third on the left (the girl in the white top)Lovely. I see you must have been having a good time with your friends that night. That's excellent. I'll try to put something on the web in the next few days, I'll send you a link when I do. Would you like to write a description of the photo as a caption for me to put near to it? Like where was it taken or who you are with.
Subject: Text and pictures posted on the internet
Date: Mon, 25 Oct 2004 19:13:58 +0100
I was awaiting for an answer from you to my last email, but I guess I can't wait. I've finally updated the website. You can read all about it in:
http://gradha.sdf-eu.org/textos/gente_maravillosa.en.html
Subject: Alicia, are you there?
Date: Sun, 31 Oct 2004 16:12:13 +0000
I sent my last two emails to the address you gave me before (not the hotmail one) but I still haven't received any answer. I was wondering if this is because you haven't been able to access that account, you are away from home for some time, or you don't want to continue communicating with me (which is ok, don't worry, you have already done enough good things for me). If my last two emails didn't reach you, I can resent them again.
Subject: RE: Alicia, are you there?
Date: Mon, 01 Nov 2004 18:32:34 +1030
Sorry i have not replied, i have not been able to access the emails through that address no more.
Of course i still want to continue talking to you! why would i not want too? you seem like a real gentleman and a very sweet guy. If u like you can resend the emials u sent to the other address.
How have you been lately and what have you been doing? i have completed my assignment, if u like i can send u a copy, but i would like to ask if it is ok to place some of what you have writen and a couple of pictures of you onto the assignment, if that is ok?
Subject: Re: Alicia, are you there?
Date: Mon, 1 Nov 2004 18:54:30 +0000
Subject: Very nice site
Date: Tue, 02 Nov 2004 17:49:24 +1030
I went to your site, it looks much better and i was very much comforted by it. You are a really nice guy.
Sorry i didnt give you a pharse to go with the picture, but ill write one now, you can put it on if you like. That was from the 16th october on saturday night. I went to my friend, Riccardos, house warming party and met a few mates of his, he is on my right in the red top. It was a really fun night, except for when his dog vomited on my pants.
By the way the name i put as my hotmail name is kinda wrong, my names actually Alicia Blam without the R. i put it in there so people could pronounce it right. Just wondering how do i pronouce your name? its a little confusing. I have tried to attach the assignment which is in power point form. But it wont allow me, so when i have more time i will try somne other way. Anyways i hope to hear from you soon.
