Please read if you want to know what's the deal with me

vbimport

#1

If you read some of my posts on CDFreaks, you might wonder why there are inverted letters and words that do not make sense here and there. You might also maybe wonder why I have special requests, or needs, that also seem to make no sense at all. As I am online all day, you might wonder if I have a life at all. These are issues I preferably try to never bring up for a variety of reasons, but ultimately, I am always obligated to bring them up. In this case, I could go on with the way I did, but I want to avoid myself being redundant, maybe avoid some explanations and misunderstandings, so I really prefer just to create a thread about it, so here it comes. Please only read if you have time in front of you, and please read everything carefully. In october of 2003, a brain tumor was diagnocized. Since january of 1998, my senses were becoming progressively more and more sensitive to almost everything. And then in september 2003, all at once they became so sensitive I had to stop living outside of my place, and live a life made only of theory. Since that time, my senses have become so sensitive to virtually any visual and auditive stimulus, that I was forced to retract in my home, to lurk in the shadow, while awaiting a cure, which I still do today. It’s not an easy ride, but at least I know it’s just a ride, and it’s temporary.

Everyone just do the same things. If you want to do anything to me, tell anything to me that is obvious well, I appreciate kindness, I appreciate having interesting discussions, but in this thread at least, could you just not say such obvious things, or try to put a little meat in your bone? I mean, do you imagine on how often I have heard people wishing me to get well soon, hoping I’d be recovered, and the countless number of times I heard paraphrases of the same few basic sentences? Imagine if you go to school or to work and you had, say an injured arm. You hate it very soon when people ask you “What happenened to you?” and after, “Will you recover soon?”, and then “I wish you to get well!”, and “Time fixes everything!”, I am not trying to sound bad but, you get what I mean? After a while, you just hope that people will stop seeing you as anything remotely different from the way you were before, or from just an ordinary, nameless face, which is also the case for me. I really hope I do not sound grumpy with this. Of course, I guess you wonder these things about me, so I am going to tell you, it will avoid such conceptions and gimmicks. :wink:

The tumor affects me because all my senses are sensitive, especially my vision and my hearing. I cannot stand any video, even for split second (no tv, movies, video games ever), I cannot stand many lightings, colors, patterns (because they produce moiré-like effects, google it if you want to understand what the term means), I never go out of my home at all because sun burns my eyes, because my retinas are hyper sensitive and get burned really easily. If I am exposed to such things, enormous pain that last for a very long time awaits me. Can you imagine how life is horrendous to me? It is, it’s a living hell, I do not wish this to happen on anyone, even the people I hate the most in the world. I prefer not to elaborate about what I feel, it’s so tricky to explain, sometimes it’s like explaining what colors are to a marn born blind. And as it is so hard to explain, it somewhat excentricizes me, and makes everyone feel awkward. This feeling I create in people’s mind, which make me feel bad, or afraid to make it spawn in people’s minds, it’s ruining my life; people will either not do anything fearing to hurt me, or make me feel bad without it being their fault, can you imagine how it’s horrible to go through this all for me, as I do not stand any choice, whatsoever? When you read that, you obviously had a few of these negative ideas, conceptions in mind. Such things are normal, in the end, benevolence, because I need to feel good, prevails upon desperately trying to be sensisble, and I desperately need to feel good, these things are reciproque.

I have the same problem for sound: no music ever, no radio, sound from tv, ever, in any way. I use my phone, but I have to turn it off whenever I hear music, I have extremely high and persistant hyperacusis (hyper sensibility to loud sounds, but also high or low pitched sound, such as any sound coming from an electrical source, especially music), and I have tinnituses that bug be all the time, they never ever stop to rest. It’s hard, but it’s my life, and I only have one to live.

And the reason I make typos and phrases that sometime make no sense, is not that english is not my first language (it’s french, but I live in Canada, and I speak, read and write prefect english), it’s just that I have a hard time reading dense texts, so I cannot edit myself at all pretty much ever. I can only try to write as well as I can before I output texts, save for very few circumstances, all in all I think I write very well still. If you wonder how I can even stand a monitor, well, I have an LCD monitor, but I disabled every animation, I fine-tuned the settings so they’d just be at their best, right now it’s the best that can ever be. Still, I cannot do much, I only visit about 5% of all websites, since colors and such bother me to no end. CDFreaks I can tolerate very fortunately. I will not go on about the pain I have to cope with: it’s HORRENDOUS. I just need to really feel good, I like CDFreaks, since it’s a very friendly site with mostly respectful people. And burning CDs well, since it does not make me feel pain at all, it sure can keep me occupied for a lifetime, still I want to profit from life soon. :slight_smile:

Lastly, about my cure, well I will get cured, but I do not know when at all, only it will be in a relatively short term, and I will get back everything with no consequence at all. I made by myself all the efforts to get access to proper medical treatments, I succeeded in making my tumor shrink, to lose all the weight I had (I am not obse anymore at all), in fact in everything but the sole thing that really matters to me: my senses. So while awaiting for my cure, I desperately try to forget it with the pain I live with, and the very few remaining means I have left. No one ever comes to visit me, and as good as some of you are, I would be really skeptical that I would see any of you in real life, at least while I am ill, please do not try to make genalistic, parabolic statesments; I heard them all ,and I just need to feel good. I always feel bad, try to cheer me up with benevolence any way you can, if you want to really help me.

I am sorry if I made any of you even remotely frown, that was not my intention, but I think you gathered. I am not a lunatic, I am a perfectly intelligent being, this disease has got nothing to do with my intellect at all, I have just been extremely unfortunate, and senses issues are often associated with mental diseases, fortunately, I have nothing to do while awaiting, to live of theory, and I have cultivated the most beautiful, and intelligent mind that ever was. It’s very hard to explain, still. Please try to understand the last thing I ever need is to feel excentricized, simply because I am not. However, the first thing I need is to feel genuinely good, as I hate myself in a sense, and for that, and not only for burning and stuff, I think that you all can try to make a difference. :slight_smile:

Thanks a lot for reading


#2

I just read your story and I reckon this must be a living hell… I really wouldn’t know how to live with the things you have to cope with. To be honest, I really don’t know what to say… so I think I’d better shut up.

Well, let me add this: I hope you have a fine time here at CD Freaks! My guess is that we can learn lots from each other!


#3

Hi Peralph,

I will skip all the friendly remarks you’ve heard so many times, still I wonder if you have other people to talk about this, or if up till now lot’s of people had difficulties to understand what you are going trough?

I also would like to tell you that I appreciate it a lot that you have shared this with us. As the founder of this site I know there are many more with a ‘less than ordinary life’ either due to a disablity, illness or whatever have found our site as a good place to spend time on.

I could have never imagined that this would be the result of a website I once made and which has now grown due to all the people coming here and working on it to the place it currently is. And of which I’m very happy to see the great progress every day.


#4

Peralph,
Very interesting post…certainly makes us apreciate what we all have
Thankyou for sharing Peralph
Good Luck


#5

I know almost exactly how you feel mate, think that probably makes me less sympathetic, maybe this is a good thing. But still, sorry for being one of the “will you get better etc” people, I know its annoying, but people will naturally want to know. I think now you have posted this you will have solved that problem. And I hope to speak to you again soon on MSN.

Regards,

Ben :slight_smile:


#6

The fun thing is that I am actually really one of you first regulars, I visited the site nearly since it’s opening (or since an english version was made as opposed as just a dutch one?), and just stopped since september 2003. I begun again in january 2005 because i discovered I could view it without too much strain. I do not remember the date I started viewing it, when was it founded again, and when did it hit mainstream?

EDIT: damn I had made a huge reply about my health and it got swept away with an INternet explorer glitch, I hope inspiration comes back to me, other than that you’re all nice, remember I’m not made out of glass, and still that I could not blame any of you for trying. I think refrain just if I can nearly read it in a chinese fortune cookie word for word :wink:


#7

Hi Peralph
I admire your honesty and I wish you well.
Online forums such as cdfreaks is a great leveller. I spend a lot of time online; I guess I spend a lot of that time on cdfreaks. :slight_smile:
Quite a while ago I suffered a head injury which left me with limited speech. Quite often I get very frustrated when I am unable to get my tongue around some words and people struggle to understand what I’m saying. Even more so at work were the kids I teach can be very unforgiving.

Online I can be equal to all, where the written word is my language etc etc.
Good luck for the future, your post was very enlightening.


#8

Ok, I have to ask this now Domin8tor, sorry for this sounding silly, but your papa smurf avatar always striked me. I think you are dutch: in what language did you watched the smurfs? :wink:


#9

Peralph…
I have to give you props for telling so much about yourself…that took huge amounts of courage. For once , since I’ve been on this fourm, I was left speechless .If you ever need someone to talk to just hit me with a pm.You sure make us all appreciate our health and even though we all have some problems there comes along someone like you Peralph to show us how small our problems are and what other people have to deal with on a daily basis…
I’m glad your posting again maybe i’ll get a chance to chat with you more often.


#10

Also in Dutch :wink:


#11

I wonder if smoking some pot would do any good or make it all worse…


#12

Uh Belvedere, keep your Dutch morals out of this thread and out of my fragile little mind! Seriously tough, I know this shit, it would make things a lot worse. :wink:


#13

Hey, i was only thinking out loud. No morals were involved whatsoever. If i knew anything to make such a life more bearable i would at least be interested.


#14

What about booze?

And what’s wrong with Dutch morals??


#15

Booze neither, with the medication I take that would be shooting myself in the foot. And sorry, it was just a silly joke based on a stereotype that was not to be taken seriously by any means. :wink:


#16

And after 25 days in the hospital, I made all the researchs (the doctors really were clueless), and put back together all the pieces of the puzzle. I wait a few months, and am cured for good, with zero consequences. After 7 and a half years, altough lots of pain remains, the saga ends.

Yeah, knowledge is power! :slight_smile:


#17

hi Peralph thanks for sharing i carnt posibly imagine how you feel but i admire your courage ,and your will to keep going i fear some people would just give up and feel sorry for themselves Its nice to see you gain comfort from this forum as do many others all over the world and its nice to see you posting replies you sound very determined and strong willed would be nice to have a debate with you sometime :iagree:


#18

Anytime, go ahead! :wink:


#19

I read this thread when it was first created but didn’t reply until now. As some of you already know, my wife has had cerebral palsy for over 30 years. Legs and hands especially but the mind is also seriously affected. But what’s missing most in her isn’t the ability to walk at 5km/h, but the strong will to learn more and keep going. I can’t blame her alone because this society has only taught her despair. I have thought the best thing I ever had was the ability and tenacity to persuade (and preach and brainwash?) someone but there has been zero progress to make my wife want to walk or live better than any other person in the world despite of everything I have tried for 2 years and 2 months. Making a newborn baby want to become a superhuman is probably much easier. :slight_smile: (She’s walking next to me right now, I mean our 13-month-old daughter.)

(When I post something of this topic, some people may misunderstand my feelings and situations. I’m never unhappy or miserable or doomed being beyond of such easy feelings. What I post here is just what I share with the most important people at CDFreaks.com, things of record.)

BTW, my daughter was born on April 18, 2004, so by now she lived about 13 months. She still looks more like a boy to my eyes. :slight_smile:


#20

man all you people gots some problems thank god all my shit is in order at this stage of my life.