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Omar

Distinguished member
Joined
Apr 13, 2007
Messages
138
Reason
PALS
Diagnosis
08/2006
Country
BE
State
Belgium
City
Brussels
Dear mates,

I know how confused and uncertain lots of us are. The more I read about people with ALS,
the more I understand that sooner or later I have to quit lots of things I like.
I hope that after sharing with you my personal story I would be able to take the right decision.
The fact is that I have been living for two years now in The Netherlands, doing my Masters and have been diagnosed right after finishing my first year. At that time I was planning to do my second year, get my Masters and go back to my parents. Therefore, I asked my teachers
for a possible adjustment in the program in case of any physical weakness; They were clear
that no adjustments would be done and in case I won't be able to follow the program I won't get my degree. I was even told to reconsider joining the second year group.
I was in a way disappointed, and already shocked from the diagnosis itself. So I was away for 3 weeks then decided to go back, work hard, do my best and get my degree. Unfortunately I was avoided by my classmates and teachers and didn't get any update for the weeks I missed. (maybe they don't know how to deal with the fact that I have a terminal disease)
Anyway, I went back depressed to Beirut, and was on xanax and cipralex for 2 months. A month later and because of my slow progression I have decided to listen to my body and to keep on doing the things I like as long as I can. Now I am back to the Netherlands and have
decided to complete my MA for the coming year, but at the same time I am afraid from being ignored again from my teachers and the new group. I feel more like searching for another school and simply start a new MA which means another 2 years.
I don't know, just confused and lost as before but with more will.

Thank you for reading such a long post.


Omar
 

hboyajian

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Lost a loved one
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I am sorry that your teachers and fellow students appear so prejudiced against a person with a serious illness. I can certainly understand your feeling of isolation and thinking it might be better to start all over elsewhere. It could be worth it to try to talk with one of the professors openly about this problem, perhaps one with whom you have had positive interactions in the past. If that does not work, maybe there is a graduate program somewhere that would accept the credits from your first year. At least then you will not lose all the hard work and time you have put in. Do you have any friends there that you can go to for support as you go through these uncertain times? Holly
 

brent

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Jun 14, 2007
Messages
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Reason
PALS
Country
US
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wa.
City
burien
what i have experanced with people ignoring me is that thay do not know how to handle my disease so thay stay away or ignor me out of fear that thay may say something wrong or ofend me it has helped to have one on one talks with them to let them know that i am not afrade of any thing thay may say
DONT GIVE UP brent
 

brooksea

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Omar,

Perhaps there is a counselor at the learning institution that you could talk to? They could be a liaison between you and the teachers/students to bring about an understanding of your situation.

If I understand you correctly, then this may be of interest:

"Discrimination of people with a handicap or a chronic illness in higher education is prohibited in The Netherlands. This is regulated in the Law on equal treatment – handicap and chronic illness (December 2003). Institutions of higher education are required to offer an education which is accessible to all students, including students with a handicap. If a student finds the arrangements made by the institution she/he is studying at lacking, she/he has the right to submit a complaint to the Commission for Equal Treatment, upon which the commission will pass a verdict. If a student remains unsatisfied, she/he can go to court."

/www.independentliving.org/studyworkabroad/NL/
 

Omar

Distinguished member
Joined
Apr 13, 2007
Messages
138
Reason
PALS
Diagnosis
08/2006
Country
BE
State
Belgium
City
Brussels
Thank you for your support,

I really feel relieved now that I am sharing this with you, I couldn't even tell my family
about it. I was ashamed and didn't want to disappoint them more.
I guess it is a good idea, Holly, to talk with one of the teachers, cause one was completely understanding but he is not one of the major teachers but I will try to contact him. So far
I am staying with 2 friends of mine and they are really helpful.
I do agree with you Brent, I have also experienced this with even some friends and family members as well, and I think that by talking, one can always solve lots of problems especially between friends. Yes there is a counselor in our school, Jimercat, I completely forgot :) so I will also talk to, and by the way I didn't know about the right for handicap people in higher education, it is really a good link I will keep it for possible future use ;) I remember that I was very disappointed after meeting my teachers and on my way back home I was starring to the special handicap entrance of our school and found it very weird and stupid to have handicap facilities in a school with no cooperative teachers.
Thank you very much for your replies, I feel much better already. I don't know if I have to be sad because I have ALS or happy for giving me the opportunity to meet such nice people.

Omar
 

brooksea

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Omar,

Please keep us up to date on your situation.

CJ
 

brooksea

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Omar,

Just re-read your post and looked at your profile. I haven't read all your posts, so sorry if this has already been addressed-

Do you look like you are disabled? The reason I ask is that my husband just had a rather disturbing encounter with a lady at the tax office today regarding disability. You see, my husband doesn't "look" disabled. Yes, he has atrophied muscles in hands and arms, and has difficulty speaking clearly, but if you did not know him very well you would not notice these things. He was asking about property tax exemption for the disabled and showed her government documents regarding his disability. She then told him that was not enough documentation and needed something from a doctor that stated "100% completely and totally disabled and unable to work." (rather redundant, don't you think?) Yet another hurdle! She treated him with pure disdain! And of course he could not understand why.

This is my point: people are ignorant and care only about their little world. They do not understand what ALS is nor do they care. After all, "you don't look sick!" This isn't the first time this has happened since his diagnosis. Here in America there are people that like to milk the system, so naturally if you aren't in a wheel chair with tubes hanging out of you then you must not be disabled! (sorry ranting)

Perhaps this is the situation in the Netherlands. Your teachers may look at you and think hmmm he doesn't really look ill. What game is he playing? It really sounds as if they don't believe you. I could be wrong...

Again, I would seek the help of your counselor and bring any info you have about ALS with you for them to read. Maybe this way at least they might gain a small understanding of what you may need to help you obtain you education.

Just a thought.


CJ

ps

also doctors diagnosis to show counselor might help
 

CindyM

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New England
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Hi Omar-sorry I am just jumping into this discussion now but I honestly did not see this thread before. It is too bad you have to be your own PR person in this situation but the sooner folks learn that you won't break or fall apart the faster they will relax around you. They knew the wonderful Omar we have come to know before you were DX'd. They just need time to learn that fellow still exists.

I say hold up your head and act like the bright intelligent person you are who has completed your course work this far. They'll come around. Don't let them marginalize you! Cindy
 

Omar

Distinguished member
Joined
Apr 13, 2007
Messages
138
Reason
PALS
Diagnosis
08/2006
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BE
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Belgium
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Brussels
hey JC and Cindy,
At that time, when I had the meetingn with my teachers I was very active and almost 100% able so I guess maybe you are right, but I remember they knew about my hospitals visits and they saw my fingers crippled so I don't know but I see your point JC and I do agree with you
so I will let you updated :) and don't worry Cindy feel free to interfere whenever you want and I do appreciate your advice so far I am for 3 days without any anti depressive pills and I am doing ok so I hope I will and you all do

thank you


Omat
 

vmd

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Omar:

Sorry to hear about the barbaric way those people in your graduate program have treated you. It's hard to believe that those who are supposed to be enlightened about these issues, the educated, often do not manifest a proper response. Hopefully, you will be able to finish your program at your current university, since you have so much invested in the program. You need to find an advocate at the university who will promote your cause and follow the issue up the chain of command. I am fairly certain you will have a positive resolution, if you pursue the issue. I will pray for your situation.
 

pldo

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May 30, 2007
Messages
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PALS
Country
uni
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unknown
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unknown
http://www.disabilityworld.org/01-03_03/gov/dutch.shtml

This is an interesting website about the new laws regarding disability rights in the Netherlands. it seems as if they have passed laws akin to American disability laws- or are in the process. Is there any representative of where you live that you can contact who can intervene for you? what about going to a local news station and having them take up your plight? From everything I have ever read it seems as if the Benolux countries try to be accepting of all people and I am sure there are some political venues you can persue.

I am sorry that they are not being accomadating. I do not know if you have family in the Netherlands- but could you transfer to somewhere more disability friendly?

My advice- Do not quit if you have fight left in you
 

Omar

Distinguished member
Joined
Apr 13, 2007
Messages
138
Reason
PALS
Diagnosis
08/2006
Country
BE
State
Belgium
City
Brussels
Hey Vmd, hey Pldo,

Thank you very much for supporting me, honestly now that my body is weak my mind is much stronger than before and I can always fight, but I have chosen to simply quite the school cause I was really hurted by these (I don't know if I can call them people). I was very disturbed and felt that I don't want to see them anymore, they made me feel that I am a loser because of my disease; At that time my Neurologist adviced me to keep on in my life, fight the disease and keep on doing things I like to do, so I went there like a stupid and told them that I have chosen to continue my MA which will help me to fight my disease and one of them simply asked me 'but are you sure you want to do this? I want you really to think about it' so for me his implicit message was 'you are sick, go and die in your room' also at that time my classmates dicided to rent an apartment in another city to work in it as a studio after school's hours so I told them but I can't stand daily train and metro travels to go to the studio and I can always come to school which is in my city so another teacher told me 'well if you can't do it, then pitty'. Now I am staying with 2 friends of mine and they are helping me eventhough I still can live on my own so they pushed me to go again to the same school and they will now meet my teachers so I don't know..

Omar
 

CindyM

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'but are you sure you want to do this? I want you really to think about it'

Hey Omar-We don't really know what was on this guy's mind, to my way of thinking he could have been concerned for your stamina, thinking that the commute and marching all over campus might tire you. When people are adjusting to another's disability they tend to over react at first...

But that said, the bottom line is, you will do better both mentally and physically if you feel you are surrounded by friends and caring people. trust your heart in this one, buddy! Cindy
 

Frizzel

Distinguished member
Joined
Mar 15, 2007
Messages
177
Reason
DX UMND/PLS
Diagnosis
03/2007
Country
US
State
WA
City
Vancouver
Hi Omar from Frizzel

I just finished reading the posts to your thread. I hope you can hear the support you are receiving from everyone. Now that my PLS is moving into ALS some people are dropping out of my life and other rallying beside me to give us more support...although I still love to give support to close friends and family when I can.

One thought I have is, "You can not change how others will respond to you. You can change how you will respond to others." Yes, many people don't know how to deal with a terminal illness. I am learning to teach people how to treat me if they want to continue to get to know me. All the others? Let them move on with their lives.

I was in my wheel chair in the store a while back. This woman backed right into my face while in line. Her rear end was about 1 1/2 feet from my face. I called up to her and stated, " Nice jeans! What brand are they? " She looked over her shoulder and moved forward again.

Did she care about me? no...did she move out of my personal space? Yes. .. I'm glad I didn't have to bump her with my chair. ha! I now use an electric and I could get some momentum up. :)

Omar, if there's one thing I could pass on, it's this. Be yourself and someone will want to be friends with you. Fear of rejection is a choice. Blessings, joy and a continued support that you will see your future in this day to be all you can be as you learn to dance the awkward yet, brave steps of ALS.


Frizzel
 

Omar

Distinguished member
Joined
Apr 13, 2007
Messages
138
Reason
PALS
Diagnosis
08/2006
Country
BE
State
Belgium
City
Brussels
Hey Cindy,
well I totally agree with you but actually they knew about my disease and they didn't call or react or send any email, maybe they didn't know what to say, so I thought about starting the move, so I sent an email telling that I am sick and that it is good for me to fight this disease by doing things I always wanted to do and that I want to set up a meeting to discuss my conditions, I sent the email to 6 teachers, and waited 2 weeks, and didn't receive any reply, so then a friend of mine was angry, so he called to set up a meeting and asked why they didn't reply to my email, so the answer was oh yes sorry we didn't reply. So we went for the meeting and they were very ICY.
Anyway now my friends will try to talk to the dean and we will see.

Omar
 
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