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Hi, I’m new here. I’m probably even a little late on this. I was 16 when I lost my older brother, which was 4 years ago. He was born with a syndrome called Ehlers-Danlos Syndrome and also had a stroke during birth. A lot of people live normal lives with EDS but there are 6 types and he had the worst. His skin was basically like tissue paper, his whole body was weak. He was in and out of the hospitals his whole life, having various surgeries. Doctors told us he may not live to see 20, but he lived until 24. He had no mental problems, was even pretty smart. He graduated college in a double major of marketing and law. He couldn’t get a job, though because he was partially paralyzed on his right side.

We’re a martial arts family and it was the one thing he had. He died doing it. He forgot his chest guard at the karate studio and got kicked too hard in the chest, it caused an aortic dissection. He was fine until hours later at home. At the hospital my parents stressed that he can NOT go into surgery, he would die. The dissection was small enough that they said he could rest and it could heal on its own with some pain medication, there wasn’t much else they could do. Two weeks later he was on the toilet and the stress of it apparently ripped it open wider. I still to this day can’t believe him pooping kind of killed him. This time we couldn’t avoid surgery. We waited hours until the surgeons came out and told us we had two options; they could continue with the surgery with very little chance of survival or they can close him up and his family can be with him in the end. We chose the second option. I don’t really think there was a right option to this, though some of you might disagree. We stayed by his bed side for three days until he passed. 

It was one of those things where we knew he would eventually die though we hoped not. I was such a young brat and I was so mean to him growing up. I wish I had matured faster or had been a better person so that we could have had a better relationship. I feel like an awful person. I didn’t really know how bad his syndrome was for him, and I never asked about it growing up. I was always out of the loop. I wish I asked more about it. 

I don’t know if anyone else has been in the same situation as me, but I’ve never talked about this to anyone, not at all in the last 4 years. My dad and I just push it back and live our lives and my mom is still a depressed mess. They fight all the time now, usually about money or her not ever wanting to do anything. My family was a mess even before his death. 

But I can reassure others that time does heal, in a way. You never get over it but you do learn to cope in your own way. My coping isn’t very healthy but I suppose that’s why I’m posting my story on here. I still think about him constantly, but it’s usually with regret. 

I’m not really sure if anyone is even going to read all this or what I’m hoping will come out of this. 

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Nicole-my grief journey

Dear Chesa14,

I have read it. Thank you for sharing your life, your brothers story. Your needing to think about what happened with the doctors, decisions, moments before and after. I think about moments like that too. I was the caregiver for my mother and interpreter of all the medical information for my family and it was so painful and hard. I did my best to help my family understand we were losing her and did my best to guide them. All while not feeling adult enough, mature enough, strong enough. They couldn’t see it, couldn’t believe it. I didn’t want to believe it and at times it still doesn’t seem real. But I was the only one in my family capable in the moments to make decisions. That carries a large weight. Sharing your trauma with us will help you and the rest of us. Sharing what you feel has helped me to know there are others out there that have gone through the unthinkable and have come out on the otherside. Not unchanged, but surviving. Going forward when there’s no road map for it. I too have kept a lot inside and it causes the body to react. I’ve developed fibromyalgia and anxiety and other things from holding it in. I’m so glad that you have spoken your truth. Your honesty touches me. I have had such unspeakable tradgedy in my life too. Watching my brother suffer and finding him deceased in November. Thinking of him, missing him every day. Replaying momenst and choices. Also, I just lost my mother to a disease that I watched tear her apart. She was a kind, beautiful, loving person who didn’t deserve what happened to her with her cancer. I stayed with her as she passed. As her spirit left her body. Her body that betrayed her. I have feelings of being lost. Losing my anchors. Watching my father be heartbroken and cry as I am trying to keep it together. I have thoughts of why didn’t I do certain things...I work on forgiving myself and others every single day. Most would say I don’t need to be forgiven or forgive...That I did right by my loved ones. I have tried to do right, but grief has spoken to me in ways that I feel are unbearable at times and other times ok and more peaceful. It’s confusing. I am trying to process everything that has happened. Sometimes I don’t even know what I’m saying and if it makes sense. But wanted to share my thoughts with you and let you know that we’re here and witnessing your grief and life’s hardship. I’ll never know why some of us are hit in the hardest ways. The best we can do is know that we loved them and they knew that we did. All the good and the bad. I’m sorry for your loss, I’m sorry your parents struggle. Sending you love and light. By sharing you really are helping others, whether they respond or not. 



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