Got Multiple Sclerosis? La Tghabbi

I got diagnosed with MS early this year. It's a mystery disease and has no cure, but in most cases it's also not life threatening, or disabling right away. In most cases disabilities only start showing after 10+ years and usually only if it's left without treatment. My point for this post is that the best weapon I found yet was information and knowledge. When you know more about it, you fear it less and your plans for your future are less uncertain. Having MS is not the end of the world.

Which brings us to the issue of "teghebbi" or "hiding the info" from your friends and not-so-close family. When I first got my diagnosis I instantly became more sensitive to stories about other people who have similar symptoms, and I started asking if it was possible to call these people and ask them about MS and how it affected them so I can learn for myself. But I immediately started getting resistence and not very subtle hints that these people did not wish for others to know about their MS.

Seems to me that since MS has the possibility of disability, it becomes a taboo, sort of like cancer. Cancer is called "ilmarath ishain", as if naming it out loud is bad luck. "He Who Must Not Be Named", like Voldemort or something.

Respecting people's wishes and privacy in this matter is fine, but I found out that hiding can be harmful to you. I personally benefitted alot from being gradually more and more open about my MS. I'll tell you how.

Two weeks ago I got a call from a close friend who knew about my MS. He told me that someone who works with his brother took his niece who has MS to a clinic in Costa Rica (Institute for Cell Medicine) which does "Adult Stem Cell" treatment for multiple diseases:
1- Multiple Sclerosis
2- Diabetes Type 2 (mid-aged people who's pancreas stopped working)
3- Autism
4- Cerebral Palsy
5- Osteoarthiritis & Degenerative Joint Disease
6- Rheumatoid Arthiritis
7- Heart Failure & Stroke
8- Parkinson's Disease

I know that it sounds fishy and too good to be true. and I know that if it does sound too good to be true, then it probably is. So I took the lead and started doing my own research and found many examples of people who went there personally and had treatment and did get better. The first one being the one I talked to in person, who was a friend of a brother of a friend, who if I hadn't told about my MS, would never have occured to him to relay the information to me in the 1st place.

I even have a 2nd cousin who had MS for 6-7 years and I didn't know if it was MS or not until very recently, mainly because his Dad didn't want others in the family to ask about his condition. And only last month after me and my Dad ignored his Dad's wishes and visited him did I know for sure it was a particularly aggressive and rare type of MS where he can barely walk now. So I tell him about this new stem cell treatment and I'm surprised when he tells me that infact he knows about it and already booked a flight to try "Embryonic stem cell" treatment. There's a whole controversy around that one so I didn't press the issue with him, seeing that you create a human emryo then have it get destroyed. But I guess he was desperate.

Here's a few links of people's blogs who did go to the clinic:
Autistic child
http://www.recoveringmatthew.blogspot.com/
MS cop
http://startelegram.typepad.com/my_fight_with_ms/

Here's the summary of my own case so anyone who wanted information can compare:

I'm 35yo, married with 3 children, not obese, don't smoke, don't drink alcohol.

Symptoms & History:
May 2007 - I started feeling numbness and tingling in both my feet, legs, up to my lower torso. The sensation was of hyper-sensitivity as well as less sensitivity to light touches (e.g. a cotton). with slight pain when touched. I also had some problems with balance, and fell a few times. this lasted until Nov-Dec 2007.

Dec 2007 - I developed double-vision when looking sideways to the left, this lasted for a month or so, and the tingling and numbness in my feet subsided slowly and is now almost completely gone. and no balance issues remain. But in the same time I developed the same tingling and numb sensation in the outer 3 fingers of my left hand only. slightly so in my index finger. no other symptoms remained and this sensation in my left hand remains until today.

Diagnosis:
My first MRI was done in Nov 2007 and it showed multiple hyper-intense lesions in the brain's gray matter as well as the cervical section of the spine. After that a Lumbar Puncture (spinal fluid taken) was done to test for Oligoclonal bands and it was positive. So I was diagnosed with MS in January 2008 and immediately was started on treatment using Betaferon shots every other day. I do these shots myself at home.

Followup:
My neurologist suggested doing an MRI every 6 months because Kuwait was proving to be having an epidemic of MS and also because my sister (31yo) was also diagnosed with MS 2 weeks after I was, using the exact same method of LP+MRI. so my latest MRI was done 27 May 2008 and showed recession in the old lesions along with development of newer lesions. My symptoms remain the same with my left hand only. My youngest sister (24yo) also did an MRI and an LP and had small lesions and was also positive for Oligoclonal bands, but never had any symptoms, and the reason for doing the tests was my own MS and my other sister, so her neorologist was unsure if she should be treated or not, and decided to wait and do another MRI in 6 months or a year then decide. My other 2 brothers don't have any brain white spots.

I hope this was helpful. I have other information but the post is already way too long

On Blocking Youtube Day 9

Please Help Us

This afternoon I got called for a meeting about a new official paper from MoC dated yesterday asking us to "block certain specific links within Youtube.com". And then it goes on through 5 full pages siting URLs and "search key words" which produce objectionable material mostly about sexual content,
- some about "slandering local arabic/kuwaiti women's reputation"
- some were deemed "offensive to Gulf heads of state"
- the singer Maraam.
- kuwaiti whores running away from school
- kuwaiti girl from "al-Awaazim" tribe.
- then multiple links about gay/lesbian content.
- again siting some URLs offending Islam
- then a couple of Youtube links of a shiite cleric insulting Abu-Baker
- then more links of "western lisbianism" written in arabic "سحاق غربي" and "arab sex films".
- then more suggestions of search key words, like "لواط" "سحاق" فضائح" "كويتيات" ..etc
- followed by a mention of "http://anonymous.org/anonwww.html" and how it allows you to bypass ISP's blocking mechanisms and that it should be blocked too.

All the links seemed to be compiled from multiple documents, scanned in very poor quality that is barely readable, one list was signed by a certain:
Khaled Jasem al-Mjaibel
tel: 7930342

and another signed by:
Abdel-Rahman Ibrahim al-Shemmeri
tel: 97906069

Both seem to be addressed to the Dept. Head of Survailance and Control of Phones:
Mr. Jasem Mohammad al-Kanderi (infamous from the previous paper)

We have not yet applied any blocking mechanism, mainly because we're worried that such a long list of URLs might overload the CPU usage on our caches. And we're not sure what to do honestly. And the decision seems to be definitely delayed until after Eid holiday.

The Rules of the Game p.5

This is a continuation of a past series P1, P2, P3 and P4 about secular morality. or morality without God, can it happen? and what would it look like.
===============================================



The Prisoner's Dilemma:

Two suspects are arrested by the police. The police have insufficient evidence for a conviction, and, having separated both prisoners, visit each of them to offer the same deal. If one testifies ("defects") for the prosecution against the other and the other remains silent, the betrayer goes free and the silent accomplice receives the full 20-year sentence. If both remain silent, both prisoners are sentenced to only 1 year in jail for a minor charge. If each betrays the other, each receives a five-year sentence. Each prisoner must choose to betray the other or to remain silent. Each one is assured that the other would not know about the betrayal before the end of the investigation. How should the prisoners act?

To summarize:

If both are good and loyal to each other, Both win modestly.
If one is good and the other is bad and stabs his friend in the back, good loses MUCH, bad wins MUCH.
If both are bad and each to his own (nafsee nafsee), both lose modestly.

If it was you and your best friend in this example, what would you do? ok, what if it wasn't your best friend, a perfect stranger?

I'm assuming that the crime doesn't matter here, you're only concern is to get the minimum sentence and minimize your jail time. Ya3ne assume that you know for certain that neither you or the other person actually did it. But the police don't care about your testimony.

Now assume that this will happen to both of you many times, over and over, every year, they pull both of you to the police station and accuse you of a different crime. (maybe the Police 7a6een 3alaikom, who knows :) deal with it.

Assuming that both of you cooperate the initial few times, and get the small jail time of 1 year, would one of you get tired of it eventually and betray the other in order to go free?

Which of the Rules of the Game will you use (mentioned in the previous parts)?

Golden
Bronze
or
Iron?

On Blocking Youtube Day 2

Thanks to you all and the amazing response, it seems the Ministry people are realizing their blunder.

Us the ISP's have communicated on the top levels to decide what to do and to try to do it together at once. The 1st plan yesterday was that of incredulity, and we wanted to all block Youtube last night at 12:00 midnight, the move was intended to basically "force the MoC in the spot light" and hopefully the public's backlash would become a lot bigger, since whoever did not know would definitely KNOW.

But around 10:30pm we got information that the MoC people said they will sit together tomorrow morning (this morning) to "discuss the issue further". Ya3ne in simpler terms "find out the extent of the stink they got themselves into", to decide what to do next.

Which also meant they were indirectly asking us NOT to block. In other words, if we have done what THEY asked us to do, THEY would have been the most negatively affected, and they KNEW that, and were asking us to hold our horses. that to me is just too funny.

====================Update Correction (23rd Sep. 4:20pm)==================
And now I got confirmation that the Minister himself has convened with his department heads and rescinded the order.
concerning the above statement:
I called people close to the Minister and it seems that the Minister was not aware of the official memo in the 1st place, so if I'm implying that he was aware of it or produced, it then I apologize and correct myself and it was not my intention to imply that. What I understand now is that the Minister spent the next day (22nd) trying to find out who was responsible and as you read on alJarida, clearly states that neither he nor any of his deputies uphold the memo.

I thank the Minister al-Ghnaim personally as well as his deputy al-Osaimy for their quick and decisive voice of reason and understanding.
=================================================================


Thank you al-Jarida and thank you bloggers of Kuwait :)

On Blocking Youtube

Inshalla tomorrow you'll be able to read about this on al-Jarida 1st page.

But I wanted to share my excitement I felt today in how sometimes journalism can make our world better.

This morning at the ISP I work for we received an order from one of the department heads in MoC (Ministry of Communication) asking us quite simply and blatantly, to block Youtube.com

The reason stated in the official paper was that if you do a search on youtube for something like "qur'an mula77an" or something like that you'll get some videos that offend Islam mock ilQur'an and our prophet Mohammad PBUH. I tried to search for the same to check what it was, but couldn't find it, but that's not the issue really because I'm positive that there are, undoubtedly tons more offensive things to be found.

Where to start?!

The issue is very revealing of how our government works. Actually most governments work this way if not enough checks and balances are installed. They say that Power corrupts, I say even if it didn't, in the very least it can be misused.

1- al-Islam, al-Qur'an and irrasool Mohammad PBUH are strong and shining beacons of the right path, and the ammunition you need to defend them is abundant and can be easily found within their pure message and rightous and impecable history. Any of us can argue with these offenders to no end and you'll never be stumped or run out of a reasonable argument to support you, assuming you did your research properly. And who knows maybe the open argument will be more effective in educating others about your plight, definitely much more than if the subject is CENSORED and BANNED. in other words:
banning something usually only succeeds in giving it more credibility, because it implies weakness in what's criticized.

2- Youtube contains EVERY possible point of view. not just the ones you dislike. but also the ones that support yours and perhaps do a better job than you in defending your point of view.

3- These offenses existed long long ago. mo tawhom. Always have, and always will.

So for the above reasons I was shaking my head at the rediculous piece of paper from MoC.

Almost 15-20% of our internet traffic these days is in fact Youtube traffic. To suddenly turn that off would be nothing less than a public relations disaster for the Ministry. But they simply did not do their homework and ask us ISP's about these figures.

Also, Youtube is greatly involved with its users in trying to calibrate itself to their sensitivities, take this story for example: YouTube Bans Gun and Knife Videos In the UK

So we live in a reasonable world, with reasonable people who LOVE to communicate and talk and reason with you. This MOC guy simply chose to BLOCK. wouldn't it have been simpler to just go to Youtube's "contact us" page and file a complaint?

The time of "Freedom of Speech above all else" is slowly being rethought in the world and big internet corporations are now more willing to listen and understand what their users want.

The MOC doesn't really need to mention any reason for the blocking, because if we don't comply and do what they ask, they simply make our life hell by hampering our requests for installations of new fiber connections, new customers and hooking up Kuwait in general.

So they always have been using strong-arm tactics to force us to block stuff they don't like, including Skype.com. What good justification is there really for the MoC to force Kuwaity citizens to use it's own international phone lines with rates easily reaching 250-500 fils a minute (1-2 dollar)? while Skype lets me call the US for 0.017$ a minute (less than 2 measly cents)? that's 50-100 times as much!!

How can they say we want you to pay more, and it will be in Kuwait's best interest??

they're either:
1- crooked and think that WE're too stupid or ignorant to do the math.
2- too stupid or ignorant to do the math themselves.

I don't think it's 1. I think it's 2. because I don't think they're crooked. But in either case they obviously feel that they can do whatever they want with impunity. That no one will tell them they're wrong.

Well today I was asked by al-Jarida's chief editor if I can supply him with a copy of that silly MoC order so he can publish it on 1st page tomorrow morning, and I gladly gave it to him. And may it "tet6arba2 foq dmagh" whoever was stupid enough to think he lives in a single voice country.

A Rockband Ghabga

So last night, me on bass guitar (on easy, easiest thing ever), Bojacob on drums (hard, he does amazing guitar on expert too! bs marrat mwahhegna, 3ade), and fad on medium guitar (he doesn't have a blog, that I know of atleast :P), and MJKout bailed on us (must be from the prospect of doing vocals!), we got together for our newly established weekly Rockband night.

We came across this piece and really loved it, here's a Youtube video of a MUCH better band:



They're called COHEED and CAMBRIA, weird name I know.. and I checked some of their other songs, didn't like their extreme hardrock muscle flexing, but a "few" of their songs did catch my eye:

like this one: A Favor House Atlantic (the embed was diabled here :P)

What's weird is their lyrics all tell one continuous story written by their lead singer Claudio Sanchez, in the form of a comic book:
Most of the songs we get to play on Rockband aren't on the same wavelength to what I like, but sometimes I get pleasantly surprised! Now I have to check their albums ^^... ok.. right in between the time I spend between Rmuthan schedule, reading some daily Qur'an, playing with Zayona, playing some SPORE , playing my weekly Dungeons & Dragons session... and so on :P

My Friend the Athiest

..Who I'm finding it difficult to care for again.

Except ofcourse, in the sense that I wish if he would surrender to Allah, and save his eternal self from eternal hellfire.

If my friend reads this he'd most probably feel hurt by my cold feelings. Maybe it is best to let sleeping dogs lie and simply pretend to like him like before, but every now and again, the moral dilemma gets replayed in my conscience.

Would it be more faithful and loyal as a friend for me to do the exact opposite and bring out all the glaring things that he's doing wrong? to tell him time and again without relent that if he dies as he is right now, claiming that there is no God that he'll be committing the most calamitous disaster upon himself, and never ever feel any joy or happiness again? that he will NOT be void and finished, that he'll be brought to Allah and thrown as a worthless heap of corrupt flesh in Jahannam where he'll rightly belong, never dying, never living, forever receiving searing pain and suffering, and I won't say "endure", because no one will be able to endure any of it.

To hide all of this terrible fate and to stop telling him about it would mean that him and I can resume having amusing 15-minute phone talks about humorous nonsense in the time being. That we can go out and have longer chats over dinner with lots of fun and laughs.

But it would all be in bad faith from me. I'd be buying my own amusement for the price of lying to him, as if I'm "fine" and "unphased" by the horrific fate he's threatened of ending up in every minute of his life that passes carrying the possibility of sudden death.

I tried to ignore his calls and avoiding him so to distance myself from the dilemma. But it never really left me. And as he kept on reaching out for me tentatively as his old friend, I found myself again in his company.

I fear something else as well.

What if by keeping the issue in frozen ice and avoiding it as much as possible in order to maintain mirth and laughter, what if by doing that, I start eroding my own faith and love for Allah. It has been said that "man 3aashar ilqawm 40 yawm.."

If you stop protesting the evil long enough, you slowly start accepting it.

Your soul can NOT exist in an undetermined state. If you don't work to decide it, it will get decided for you. decided how? without you actually actively doing something to accept the evil? well by not rejecting the evil yourself. that's how.

The sa7aaba who were riding back with irrasool PBUH from Tabouk simply wanted to engage in "harmless" fun and they said a joke about the other sa7aaba who were "readers" of ilQur'an. that they were cowards in time of war, and big bellied in time feast. And what was the result of that?

Qur'anic verses came down about them proclaiming for all to hear, that they have committed "kofr". "la ta3tathero faqad kafartom ba3d eemaanikom." so they were NOT munafiqeen, they used to be faithful. but they neglected their faith, and let themselves slide back out of it. la 7ola wala qowa illa billah.

Being faithful is a full-time job is what I conclude. mainly conclude it for myself. And I am left with both intense fear, and also, intense hope that Allah will help me do it. as it is He who made me think these thoughts, and it will be only Him who'll help me execute them in my reality.

o Mbaarak 3alaikom eshahar :)