Cousin Died

[masumeh]

Hi all,

A bit sad this week, after hearing about my cousin's death in Iran. This is my father's side of the family, and I know very few of them, so I only remember his sister and not him. But he had a fainting disorder/ siezure disorder/ nobody knows why he would "fall". For many years, I think since he was about 20. He is now in his 40's. He was with his pet pigeons, and had an episode, and cracked his head against a wall and bled to death before the family found him. His mother, my aunt, died many years ago, when he was a child, because of the same condition. She used to have episodes, and she had one in her garden and asphixiated on dirt and died. They took him to doctors, but none of them could figure out why he faints. He just lived with it. The family was cautious not to leave him alone...but obviously nobody can be there 24/7. Anyway, it's really downing me lately, because I have a similar beginning, age 20, like my aunt and cousin. But I'm trying to have a different ending, and this is just draining my optomism. I'm trying to push myself to believe that I shouldn't worry about being ill. I don't know. Any advice on how to get my attitude back to where I don't think about the IFs? I was trying to just focus on what I CAN do, and living my life to the fullest...but this is kind of depressing and I feel bad also that it's a relative whom I never even met or cannot remember because we're so out of touch with the family over there in Iran. Guess it's just altogether sad.

[Maxine]

Yes, that is sad, and I'm so sorry to hear about this.

I know you can overcome this, and come out stronger then ever. This is an education process, and unfortunately family, doctors, and other medical professionals find out how serious a condition is when something terrible happens.

On a positive note, you live in the US, and I think there is much more knowledge on this condition, and many different treatments to prevent tragedies like this. I'm wondering how much they know about Dysautonomia in Iran.

My thoughts and prayers go out to you.

HUGS,

Maxine :0)

[mjan]

Sorry for what you are struggling with and loss of your cousin.

Are you sure your cousin and Aunt had Dysautonomia?? It could be seizures as well. There are several kinds of seizures and one is where you just suddenly fall over or Drop seizures. But have hope..and know you have our support !!

Warmly, Jan

[sandymbme]

Any loss that calls into question our own frailities can be especially hard to take. I wish I had words of comfort that could magically erase your fear or your grief. I can only echo what others have said, that we do have a great deal more hope here in the United States as far as treatment goes. I hope that you have family here to take comfort in during this sad time. You will be in my thoughts.

[erik]

My condolences for the loss of your cousin. One consolation is that while he died unfortunately and quite prematurely, it sounds as if he was in a happy setting amongst his pets (assuming they weren't too much of a chore I've always enjoyed my pets and I knew a bird lover who loved nothing more than to be amongst her many birds even amid their chaos. I hope it was this way for your cousin.

I haven't much advice on dealing with the IFs. One can take precautions and hope to minimize the occurrence and risk. Nonetheless life entails risk regardless. I think your attitude is sound and I expect a better feeling will come to you with time. I don't think it is uncommon to mourn for someone even when you didn't have the opportunity to known them directly. They are family and you have a bond with them. Perhaps your sadness is a sign that you are more connected to your remote family than you usually sense.

[potsgirl]

I'm sorry for the loss of your cousin and the grieving that you're going through, and wish you peace.

Like others posted before me, I think that your being in the US will make a major difference in getting your medical issues diagnosed and treated appropriately. It's difficult to know what was actually afflicting your aunt and cousin - it might not have anything to do with your health.

I also believe that sometimes things happen for a reason. You're grieving over the loss of both your cousin and the fact that you didn't know him. I think this gives us the opportunity to make things different in the future. You can reach out to your other relatives in Iran now and work on feeling more connected to all of your family.

Best wishes,

Jana

[Sophia3]

just wanted to echo the sentiments and say I am sorry for your loss.

[Mrs. Burschman]

I am sorry for your loss.

I certainly don't think it means anything for your treatment or future.

Amy

[Guest tearose]

I am sorry for your loss.

Please try not to worry about the IF's. Do whatever you can to maintaing your health and be proactive. Worry only adds strain.

peace,

tearose

[pat57]

I have heard that doing something to honor the person helps. That could be planting a tree in his memory or starting a scholarship foundation and anything in between.

Personally it has always helped me to set aside time to mourn. I might spend two hours deep in memory and sadness but somehow I can move out the mourning when the time is up, because I feel is has been addressed. You can chose the number of days and the number of hours that works for you.

[goldicedance]

You and your family are in my thoughts. I join with the others here in offering condolences as well as hope as you continue your journey in the U.S.

Lois

[masumeh]

Thank you all for your kind condolences and good suggestions about coping.

Iranian medicine is pretty good nowadays, but I don't think they know much about dysautonomia. There is a kind of memorial 40 days after the burial, and my father is planning to go to Iran to attend that. Maybe while he's there, other people in the family will talk more about how many of us have syncope. Looks like it's something nobody talks about but several are suffering from.

I'm feeling more like my prognosis doesn't have to be like his, and more hope that my generation will get better medical treatment. I don't live in the US; I'm in Saudia. But since my parents are in the US still, I see doctors there during my summer vacations. I'm also very careful about carpeting in my house, so maybe that will help. I read a lot about protecting oneself from injuries due to syncope or siezures, and I follow most of those tips including no baths, no pan handles over the edge of the stove, no driving, not a lot of tables or hard furniture, padded carpeting, and so forth. I have fainted more than 1,500 times since the first faint in 2002, and I've had significant head injuries but nothing that drew blood. I'm wondering whether my cousin was perhaps attacked and they just thought he hit his head on the wall, because they said it was so much blood and he bled to death from that head injury--I just can't imagine a bang like that just from fainting. But he probably also weighs a lot more than me.

Anyway, thank you all again for the kind words and prayers and sympathy. This forum is always very supportive.