View Full Version : TO QUIT OR NOT TO QUIT! that's the question
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
06-17-2007, 08:21 PM
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
06-18-2007, 07:55 PM
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
06-18-2007, 10:52 PM
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/
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
06-19-2007, 08:10 AM
Omar,
Please keep us up to date on your situation.
CJ
brooksea
06-19-2007, 02:44 PM
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
06-19-2007, 03:19 PM
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
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
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.
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
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
06-24-2007, 09:09 AM
'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
06-24-2007, 10:42 AM
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
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
Well Frizzel,
You make me laugh :D
Thank you, I feel now more strong, more alive, more me.
But I don't know why I keep on believing that my ALS will stop one day.
If so I hope that we all will get rid of it.
Omar
CindyM
06-24-2007, 06:28 PM
Omar-I am glad you have some caring friends nearby. It's great that they want to set up a meeting with the Dean. The more you talk about how cold they are at the university the more I can see why you want to leave for a school with more understanding professors. But go to that meeting before you leave, if only to stand up for yourself! You'll feel better if you face them, look them in the eye, and show them you are still the student they knew.
Regarding the possibility of a cure-it could happen! We only need a few more years and your condition could be slow-moving enough that you could take advantage of the impending cure. Hold onto this hope. Good feelings are the best sort of medicine! Cindy
Yes Cindy, now my friends here are advising me the same, to go and face them, cause my choice was simply to run away, I guess it was a normal reaction for a newly diagnosed but with time one becomes stronger.
and Yes I do hope for a cure. I even went to Paris cause I was told that they have got a cure over there but it was not true and the Neurologist told me simply to start massage sessions and Rilutek.
I guess people up till now are still mistaken ALS with other diseases or simple they don't know much about it. and one thing I hate most when they start to say that I am not sick and that it is all in my head. grrrrrrrrrrrrrrrrrrrrr
Omar
MtPockets
06-25-2007, 08:41 AM
I have been following your comments Omar and feel for what you are going through. Especially the part about, "it's all in your head". If those same people would take just 15 minutes and do some research on the internet then maybe their eyes would be open to what is going on with you. But, no some people think they already know everything and just blow it off.
I wonder if you printed off a few pages of information about ALS from the internet and gave it to them if they would even read it and maybe gain some insight. After all these are people who are suppose to be seeking knowledge, right?
I wish you the best and peace in the midst of the storm my friend.:)
God Bless
Capt AL
It is indeed a storm for all of us, so lets always hope for a soon spring.
thank you for your support MtPockets :)
Omar
CindyM
06-25-2007, 06:54 PM
When my Mom was first DX's with Alzheimer's she looked fine, except for the fact that she would find herself at the Mall and have no idea how she got there or where she was. (She was driving at the time.) But people, even my sisters, said there was nothing wrong with her since she looked healthy.
MT is right. People make up their minds based upon what they think they know. Don't let them get to you. You have to stay calm and happy if you want to feel well. regards, Cindy
brooksea
06-25-2007, 11:19 PM
Omar-
So sorry for the treatment you've received.
You are a graphics artist? USE this for your self!
Perhaps make a brochure of your life and what may be waiting for you in the future. And with their help, they could make a difference. Make them feel included in a cause. A champion.
CJ
sorry really tired/just giving thoughts
CindyM
06-26-2007, 05:47 AM
I actually was wondering if any of the ALS societies had brochures on the disease. It might help to bring won to the professors who are treating you so coldly, Omar. Aanyway, we are here for you! Cindy
Well CJ I am already designing an ALS logo, it is also an idea, Cindy, to have some ALS brochures; I don't know..
I will meet them on Tuesday and I asked 2 friends of mine to come with me.
I am a little bit stressed grrrrrrrrrrrrr;)
How did the meetings go? I am glad that you have good friends to go with you! I had another crazy idea- could you go to someone like Oprah or Ted Koppel (he profiled someone with ALS) and have them tell your story- these people have sort of an international presence and maybe could help you out. Keep fighting!
CindyM
06-27-2007, 05:06 PM
Hi Omar-how's it going? Did you mean Tuesday of this week or is it next week? I hope you get the results you want at your meeting! Cindy
hboyajian
06-28-2007, 12:27 AM
You may be sick in body, Omar, but those people you are dealing with are sick in mind, heart, and spirit. Perhaps the cure for their illness will someday be found. I am glad you are going into the meeting with friends and support. You have a right to be treated fairly and with dignity. Perhaps they will learn some humility and human decency. If so, you will have taught them more than they could possibly ever teach you.
Hey Pldo, Cindy and Hboyajian,
Unfortunately we don't have only to deal with the fact that we are sick but also with the way some people are treating us. I feel much stronger now, and I don't want to spend not even a tear on such people, so no more crying ;) and yes the meeting is next Tuesday.
Thank you much, as I told you before I didn't want to discuss this with my parents for not disappointing them and I feel now relieved after talking to you.
Omar
Omar-
You are brave and determined! Please let us know how it goes. It seems like there are a lot of people pulling for yoy :)
Hey Pldo, hey guys
As I told you before two friends of mine are taking charge of this issue now.
For more than a month, they have tried to make an appointment with the teachers, and every time they managed to agree on a meeting, the teachers used to cancel it, so the situation became very tense especially when one of the teachers claimed that the school is closed while it was opened, so my friends told them that they are willing now to go higher and to call them for a meeting with the dean, then she called back (the teacher) claiming that they were too busy and that they will meet me somewhere in September. So till September then. I am getting really tired from all this. Don't feel like seeing them again :(
so we will see
Frizzel
07-09-2007, 10:26 PM
Hi Omar,
September seems like an eternity to wait especially with this disease. Still, it's only 52 days until you have the meeting. Have you thought of asking your buddies to schedule the meeting time for you of when a 'good time' WILL be and then have someone go with you in September? Write who you've talked to and when... just so you remember when you have your meeting.
Enjoy your summer. Are there any things you'd like to do or places you'd like to visit or people you'd like to spend some time with? Just asking. Take care of yourself and say kind words to yourself that you appreciate about being 'Omar'.
All the best!
Frizzel
Wow- I cannot imagine anything like this in America. Just a question- is there any other university that you could go to- one that would appreciate your talents, and understand your struggles?
Hey Frizzel and Pldo,
Well I was hesitating going back to the same school and that's why I have posted my story in here to make up my mind. My friends here adviced me to do it since there is one more year to go but now I feel more disappointed from the teachers cause I only see them interested in earning money than teaching. but one of my friends called the dean of the school and she was angry because none of the teachers told her about me so she will now also follow it up.
I don't know they are just keeping me waiting and waiting and waiting, I have been waiting for over 7 months now.
With time I am getting more used to my disease, and much stronger so I am afraid that I will end up fighting them even though last thing I want now is to fight.
Sure there is other universities but it means again that I have to search, apply and wait.
Meanwhile I am planning to visit the States and Canada and maybe my city to see my family.
Frizzel
07-10-2007, 09:35 PM
Get with people who love and care about you. Good idea. Travel while you can...another good idea. Let us know if you'd like when you go and we'll possibly talk with you when you check into one of the internet cafes. In Joy who you are Omar!
YOu have amazing friends where you are- enjoy them and your family. The greatest gift in life is love and expeience it to the fullest!
I would like to thank you guys for your support in here, and I wanted to let you know that we finally set a meeting with the teachers next wednesday, I hope it will work this time
Thank you again
Omar
Let us know how it goes. How are you feeling? Did you have a good summer with your friends?
brooksea
09-09-2007, 10:12 PM
Omar,
By now you know you have certain rights...you advocate for yourself and you will be fine. These teachers are just ignorant of the disease and need to be educated. Your mind is still the same as always, though your body may not be. That is no excuse for "teachers" to mistreat you.
You let us know what happens. If necessary I'm sure many on this forum would support an email campaign to your university to help educate those that question why you need to finish your education!
hboyajian
09-09-2007, 11:36 PM
Omar, Consider taking a friend with you to support you and help you keep track of everything that is said and done. I sincerely hope all goes well for you this week. Holly
Good luck, Omar! Hope you enjoyed your trip to the US. :)
Liz
Tnx again guys for your support and tips,
Actually the meeting went well, and the teachers where different so they didn't mention anything from last year, they just talked about the current program, students and my abilities.
So it was good to contact the dean and the consular of the university and to bring my case on a higher level so the teacher knows that the dean is watching :D. So I feel more relaxed now and still planning to have a private discussion with the teacher about the way they've dealt with me last year cause so far our relation is in a way tense, at least from my part :D
and yes Liz I enjoyed my visit to NY and NJ, took lots of fotos and still planning to visit again
I have even bought lots of supplement like vitamin B and E, coq10, MG :)
Tnx you all again and it really feels great to keep on doing things we like as long as we still can
Omar
brooksea
09-15-2007, 12:12 PM
Congrats Omar! Glad you got over that obstacle!
Good luck with your studies...
Thank you CJ,
I hope it will work out as well
66dewitt66
11-05-2007, 04:34 PM
Hi, I'm new to this site and am an ALS caregiver/friend. I have read your story and I feel so angry about the way you are being treated by your professors/school. Your quote 'but are you sure you want to do this? I want you really to think about it' is incredible to me. These buffoons have no idea what they're talking about. Anyhow, my advice to you is to do EVERYTHING you want to do. If there are too many obstacles in this forum (your university), find an online course or another school. Make happen what you want to do. Where and when you are going to die are irrelevant. I don't see that ALS has anything to do with your choices/pursuits except for the obvious physical limitations that will slow you down (not prevent you). You are still alive and living. Fight fight fight and never give up! Never give up!
Ms Zack
11-05-2007, 07:02 PM
I am new to this forum so hope I am doing this right. I am the widow of a beautiful guy who lived 5 years with ALS. We gave up on all persuits but travel together, and our friends and family. We made those 5 years the very best we could. I am guessing your family would love to have you near them. Could you satisfy your need for learning closer to home? You need to get a really good support system in place. I wish you much luck and love in whatever you decide to do!
Sammantha
11-08-2007, 06:47 PM
I was reading your post and felt compelled to respond..... I have "inadequacy" issues because of my illness. I was once a full time working mother who went to school at night taking four to five classes a semester and getting straight A's to someone who tries to get through the day without taking three naps!! I think you feel that your classmates and teacher's expect you to be the same Omar physically and you yourself feel bad because you cannot. I think it might help you if you start this new school by letting people know about ALS. Now, i know that is difficult because noone wants to even think they have it let alone announce it, but this way people will understand why you miss class or need extra time for studies. First of all, you did not QUIT, your body is giving you too much of a hard time and is telling you to slow down, do something different!! ALS is a difficult diseases, especially for people who are overachievers or people who come from homes that expect you to be the best..... Do what your body is telling you!! If i had listened to mine a looooooong time ago i may not have been in the mess i am in... Go out and have fun, even if your idea of fun is obtaining a master's degree.. Best Wishes, Sammantha
Hello Omar,i have just been reading over your posts and i have to say that i am tottally appalled and shocked that so called educated people and the educators themselves could be so STUPID!!!!You are defiantely not a loser in any sense of the word if thier are any losers in this situation it would be those people who claim to hunger for knowledge especially the teachers and are not willing to educate themselves about your disease.I am glad that you have friends that care about you and are supporting you in this fight.Do not give up the fight you have a lot to teach them!!!!!!!It just blows me away that you emailed six of them and not one replied!!!Good luck and i am rooting for you!
Hey Dewitt, Zac, Samantha and Gina
Thank you very much for your support, and sorry for the late answer ; I was in China without any internet connection. Well now I have joined again the course and I am happy that I am still able to work on my MA. Honestly there is still lots of stress at least from my side with the teachers because we haven't talked about the way they've dealt with the situation last year. So now I am asking for an open meeting in which I get all the answers for their odd behavior.
Thank you again
omar
Hey guys,
It has been quite a while since I've posted in here. I would like to update you that finally I've graduated and got my MA, It has been a tough year.
I would like to thank you for your support and am looking forward to seeing you around
take care
omar
PDaddy
09-30-2008, 09:09 PM
CONGRATS OMAR! Unfortunately, the list of forum members keeps growing. That's a big milestone you just achieved!
brendapals
09-30-2008, 10:27 PM
Way to go Omar!
I haven't had a chance to read the whole story, but apparently you've been quite busy!
I am working on the last 5 weeks of class before having my BSN. It's a lot of work, but it's an attainable goal.
Keep the faith,
brenda
Congratulations Omar. It has been quite a while. How are you doing?
AL.
CindyM
10-01-2008, 07:26 PM
Way to go, Omar! I was wondering how things are going for you! Welcome back!! Cindy
Tnx much PDaddy, Brenda, Al and Cindy
I am doing ok so far and curious about what has been going on in here.
So will catch you around, take care and see you
Micheline_h
10-07-2009, 09:51 PM
you rock Omar....congrats to you :)
