Grief is a part of the HPS community. Until we find a cure, it probably always will be. Knowing how to handle grief as a community, however, is almost as complicated as the emotion its self.
I suspect that people regularly pass away from HPS that I never know about. I know that people pass away from HPS never knowing they even had it. Different segments of the HPS community, however, know different people. I didn't personally know Jose, but my friend Rebecca did. I've struggled with whether to post the following item to the listserv because only two people on the HPS adult listserv knew Jose. Yet, I feel so strongly about honoring everyone with HPS, and supporting one another in our times of need and grief. People should feel free to post to the group if they're going through a tough time and need support.
How do you weigh the needs of newly diagnosed people with the needs of more seasoned HPS'ers who have experienced more losses? How to we honor those losses while remaining focused on the positive things the future has to offer? Those that have gone before us didn't have the benefit of what medicine learned from their experiences. We enjoy that benefit.
I decided to post Rebecca's honoring of her friend here. This is a place where I try to preserve HPS history, and Jose definately had a role to play in that history. So, for now, perhaps this is a fitting place to honor him.
We also honor those that went before us at the HPS conference. We do it quietly at the crack of dawn on Sunday morning at a small memorial service. Everyone is invited to share memories of friends that have passed. We do it this way because the conference is so upbeat and positive. We don't want to frighten or depress newer people. But, some of the more seasoned crowd really do need a place to grieve their losses. Yet, sometimes waiting until conference just seems like too long when feelings are raw.
I don't know if I'll ever completely feel at peace with how to handle this issue.
But, I do greatly appreciate that Rebecca took the time to remember Jose and share her memories with us so that we can keep them forever.
From Rebecca:
I was introduced to Jose Ocasio by Carmen. He and I started to have frequent phone conversations and became phone buddies. We spoke almost daily while he was staying at the NIH. He would speak to my mom also because he had lost his mom and she became kind of a mother figure to him. You kind of feel like you know a person when you talk that often even if you have never met I'd like to honor this man in my way and I feel that no matter what I say, it'll never capture his true essence.
You just had to know him to get how playful and fun he was.He told me that he did a little bit of everything in his life. When in college he studied medicine and science a lot and that he was currently a teacher. He was a musician and played with some of the greats in Latin music including Willie Colon and I think Harlow, but my memory is hazy. He said was very particular about how people played but not about the music he actually listened to. He would play his guitar while he was at the NIH and one day while I was on the phone, he played a little for me. It was beautiful.
He was very outgoing, talkative, playful and warm. He was married with 2 children, a girl and a boy. He was very close to his children. He would say that his son was a little shy but his daughter was outgoing like him. He had his moments but he was generally optimistic and a religious man. He spent this last Christmas with his family and they played music (his brother is also a musician) and they even sang, so I am glad he at least had those moments.
I suspect that people regularly pass away from HPS that I never know about. I know that people pass away from HPS never knowing they even had it. Different segments of the HPS community, however, know different people. I didn't personally know Jose, but my friend Rebecca did. I've struggled with whether to post the following item to the listserv because only two people on the HPS adult listserv knew Jose. Yet, I feel so strongly about honoring everyone with HPS, and supporting one another in our times of need and grief. People should feel free to post to the group if they're going through a tough time and need support.
How do you weigh the needs of newly diagnosed people with the needs of more seasoned HPS'ers who have experienced more losses? How to we honor those losses while remaining focused on the positive things the future has to offer? Those that have gone before us didn't have the benefit of what medicine learned from their experiences. We enjoy that benefit.
I decided to post Rebecca's honoring of her friend here. This is a place where I try to preserve HPS history, and Jose definately had a role to play in that history. So, for now, perhaps this is a fitting place to honor him.
We also honor those that went before us at the HPS conference. We do it quietly at the crack of dawn on Sunday morning at a small memorial service. Everyone is invited to share memories of friends that have passed. We do it this way because the conference is so upbeat and positive. We don't want to frighten or depress newer people. But, some of the more seasoned crowd really do need a place to grieve their losses. Yet, sometimes waiting until conference just seems like too long when feelings are raw.
I don't know if I'll ever completely feel at peace with how to handle this issue.
But, I do greatly appreciate that Rebecca took the time to remember Jose and share her memories with us so that we can keep them forever.
From Rebecca:
I was introduced to Jose Ocasio by Carmen. He and I started to have frequent phone conversations and became phone buddies. We spoke almost daily while he was staying at the NIH. He would speak to my mom also because he had lost his mom and she became kind of a mother figure to him. You kind of feel like you know a person when you talk that often even if you have never met I'd like to honor this man in my way and I feel that no matter what I say, it'll never capture his true essence.
You just had to know him to get how playful and fun he was.He told me that he did a little bit of everything in his life. When in college he studied medicine and science a lot and that he was currently a teacher. He was a musician and played with some of the greats in Latin music including Willie Colon and I think Harlow, but my memory is hazy. He said was very particular about how people played but not about the music he actually listened to. He would play his guitar while he was at the NIH and one day while I was on the phone, he played a little for me. It was beautiful.
He was very outgoing, talkative, playful and warm. He was married with 2 children, a girl and a boy. He was very close to his children. He would say that his son was a little shy but his daughter was outgoing like him. He had his moments but he was generally optimistic and a religious man. He spent this last Christmas with his family and they played music (his brother is also a musician) and they even sang, so I am glad he at least had those moments.
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