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Nadir

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Joined
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PALS
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08/2013
Country
US
State
Massachusetts
City
Watertown
I wanted to share this to inform you that there are things far worse than ALS alone. I was diagnosed two years ago; I am 31 years old now. Currently, I cannot use either my arms or my legs in a useful way, controlling my pc using a head tracker.

I met my wife ten years ago when we were both university students. We were very happy and got married 5 years ago. While we were both in the last year of a master’s program, I got a PhD and research assistantship offer from a prestigious university in Germany. I accepted the offer as they agreed to also employ my wife. Two and a half years later, my symptoms started with left foot drop around the same time when our daughter was born. Several months later, I was diagnosed. That day, we promised each other to never give up. We completed our PhD studies and moved to Turkey, our home country for the moral support of our families. While we were in Turkey, my wife told me that his dad has a lot of tax debt, and asked me whether we can help him to pay his debt. Since they have always been very nice and morally supportive to me and to our marriage, I happily accepted her offer and we lended 90% of our savings to them. Around the same time, I was offered a senior researcher position from MIT, and again I accepted their offer after they also agreed to accept my wife to the same position. Her mom (for 3 months), and my mom (for 6 months) stayed with us in the US to assist us. When I went to Dallas to try an experimental therapy for a month with my mom, my wife didn’t want to accompany us, but went to Turkey for vacation with her parents for that period. After struggling for a week in Dallas, my dad came from Turkey and stayed with us throughout the treatment period. While I was under treatment, my wife was sharing her happy moments with her relatives and friends on Facebook. I was also hoping to attend a stem cell trial, which didn't happen. We worked at MIT for almost a year. Since Boston is very expensive, while working at MIT, I was also doing contract work for a lab in US. As my condition got worse, and my hands were significantly affected, we decided to leave US to try an experimental treatment in Turkey. After we returned to Turkey, I noticed that my wife was preferring to spend most of her time with her parents and relatives, who are in another city far away from where I live. I was staying with my parents in Ankara (I still am and they are taking care of me). Even though I was missing her and my daughter a lot, I wasn't telling her to give her space. She was looking quite happy, sharing her happy moments with her friends and relatives on Facebook. My close friend was telling me that her Facebook profile does not contain even a single picture of me, his husband, and she was even hiding that she is married. Even though I was feeling quite sad about hearing these from my close friend, I wasn’t telling her anything about it. When we were in the US, to make her life easier, my parents proposed to take care of me in their house. Although I was against the offer in the beginning, after my wife explained that this is the most sensible way, I agreed. We had decided to live in the same region of the city, so that we could see each other every evening after work and eat dinner together. She found a position at a university and another part time position, both are in Ankara, both with my reference. As we had decided previously, she rented a flat in Ankara, but at the opposite side of the city. She bought all of her furniture’s and a car by using the money I saved in the US. When I went to see the flat, I felt depressed, as there were 14 stairs preventing me from coming to my home. I tried to climb the stairs with the help of my father and brother, but I couldn't. We called my wife and told her to come outside. She, her mom and my daughter came outside. I didn't tell anything to them and tried to look as if I am very happy, I didn't let them feel my disappointment, to not make them sad (how stupid I was). When returning home my dad was quite disappointed, more than I was. He said, "there are so many apartments with the same price with accessible entrance nearby our apartment, why did they rent that one". He was right, that was the question I was afraid to ask to myself. Few days later, I sent her an e-mail, asking her why she acts like she is no longer interested in me. Her answer literally shocked me. She was basically telling me that she no longer has time to help me with my problems, and she will focus on living for herself and our daughter. The next day, I went to her flat with the help of my close friend to talk to her, but she didn’t want to talk; I spent 10 minutes with my daughter in my friend’s car then we left. Two days later, while I was on my way to seeing her, I felt down from my wheelchair and injured my head. This time, when I finally reached to the front of the building to talk to her, she yelled at me and told me that she will call the police if I ever come there and disturb her again. When my friend told her that I had fallen down from my wheelchair while coming there, she told him that I am using my condition as an emotional abuse, and she is not interested. She even told my friend that my parents want to get rid of me, and she is no longer stupid and naïve to take care of me. It was extremely shocking for me hearing such things from her, after everything I have done for her and her family. How could she say such things, even though my parents have been always with us for support? Nevertheless, I continued to involve our friends and relatives to help fix our relationship for the next two months, but she was turning down every possibility of communication with me. In the beginning of August, I received a letter from family court and learned that she applied for divorce. The things that were written in the letter have literally shocked us, it was full of lies. It was even written that my parents have fired her from our apartment, and I remained silent while all those were happening. Even after receiving the divorce letter, I have fought until this time to save our marriage, but she ignored my every attempt. In August 11, in my birthday, while she was in holiday in her hometown, I took a flight, alone, with the help of my friend, thinking that maybe I could surprise her and my daughter, and maybe we could be a family again. I had told my friend to call her and tell her that I was in the plane. She had refused to pick me up from the airport, and told my friend that I should return with the next flight. I stayed that night in the office of the airport police. Next evening, my brother came and brought me back to Ankara. This was probably the most stupid thing I have ever done in my life. Last time she told me that she found peace since she had left me, wishes me that I find the same peace someday.

I progressed a lot in the last 6 months because of what I have been through. I do not want her to get away with everything she did to me, but I do not have much strength left to fight back unfortunately. Nevertheless, any suggestion will be appreciated.

Even if you have ALS, if you don’t have a disloyal and horrible spouse like that, you should consider yourself lucky.
 

Atsugi

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I feel sad for you, Nadir.

Unfortunately couples and families sometimes break up. It's devastating, mostly for the PALS. I hope you're able to cope with this. It's not good to be without a caregiver of some sort.
 

Nuts

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I am so sorry, Nadir. Will you stay with your parents?
 

Michellesews

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I'm so sorry Nadir. I hope you can somehow find peace out of all this.
 

LifeEnthusiast

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I'm so sorry Nadir. My spouse left me during this illness too. I know how deeply it hurts. But the profound shock and the pain does eventually subside some. It takes while, but it does start to ease. Just breath.
 

4tloml

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I am so sorry Nadir. I think ALS tests PALS and CALS to our cores. We really discover who we are, what is most important to us, and how to muster up courage and stamina we never ever thought we had. Some would-be CALS just aren't able for whatever reasons, to pull all that together. I feel sad that they'll never experience the deep satisfaction of bringing comfort or meeting some need bigger than their own. And I wonder how they will reflect on that as time passes.

I'm happy for you that you have family caring for you and friends near and involved. They are blessings, and I wish you and them better days together.
 

gooseberry

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Nadir, I wish I could make this better for you. I tend to think you are better off surrounded by people who love and care for you than someone who would see you as a job. You will receive much more compassion. I feel sorry for your wife. For those that leave when times are tough I think show their true colors.....the inability to show strength of character makes me wonder what we find attractive in the first place. I wish you the best....to find peace, love, and comfort surrou ded by family and friends that love you
 

Nadir

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Joined
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Reason
PALS
Diagnosis
08/2013
Country
US
State
Massachusetts
City
Watertown
Thank you so much for your encouraging comments. Yes, I am staying with my parents since I came back to Turkey.
 

gooseberry

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Joined
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Messages
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This journey is hard Nadir. I am glad you have love and support. Many people with this horrid disease do not.
 
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