In memory of Justin Noble - Justin30 on PR

[Gingergrrl]

his being cut short so early in life is a good reason why everyone should be freely able to access some sort of autoimmunity (paraneoplastic) syndrome antibody test panel without being made to feel like you're a complete head case by some alleged medical professional who is probably lacking in any understanding in the area anyway.

Beautifully said @kangaSue and wish I could co-sign your post. I had been talking with Justin almost daily via PM from Aug until he passed away re: paraneoplastic syndromes, autoimmunity, and treatments that we were both either doing or would be doing in the future (IVIG, Rituximab, etc). We also discussed personal issues that we were facing.

Even though several months have passed, at least once a week if not more, I think that I need to update Justin re: my treatment and share things with him that I have learned that I think might help him... and then it hits me that he is gone.

He was such a generous spirit and I still miss communicating with him. His passing was without question the hardest one for me since I joined PR. I wish he could have lived a little bit longer although I am glad that he is not suffering anymore.

 

[SuzieSam]

Oh my gosh, this is so terribly tragic. I joined PR after this, so never had the opportunity to know him. Did he die from paraneoplastic syndrome - from the delay in diagnosis and not getting treatment for it in time? Awful. My heart goes out to his family and to you guys, his friends.

 

[dannybex]

Same w/me @Gingergrrl. I've felt from time to time that I should let him know about this, or that, but then remember, he's gone. I've been haunted by the fact that I didn't realize until a week ago or so that he read my last message the same day he died. I thought it had been the day before. I hope I didn't say anything that upset him. I don't think so, as I was always trying to encourage him and help him to remember others who had outlived their doctor's prognosis...

@SuzieSam, I don't think anyone knows, and it's probably not wise to speculate, but I hope it was quick. I know that he was suffering terribly, and under incredible, multiple stresses. Yet he would always reply, up until the last day or two, when it became too difficult for him to do so.

So as @Gingergrrl and others have said, the only good thing is that he's at peace...no longer suffering.

 

[Gingergrrl]

Same w/me @Gingergrrl. I've felt from time to time that I should let him know about this, or that, but then remember, he's gone. I've been haunted by the fact that I didn't realize until a week ago or so that he read my last message the same day he died. I thought it had been the day before.

@dannybex I am so glad that you relate to this feeling of wanting to send someone a message and literally going to the computer and then realizing that they are not there to read it. He sent me his final message the day before he died which still haunts me, too, because he thanked me for being a good friend. I still wonder if there is something that I could have said or done that would have made a difference but I will never know.

I hope I didn't say anything that upset him. I don't think so, as I was always trying to encourage him and help him to remember others who had outlived their doctor's prognosis...

Danny, I am absolutely certain that you did not say anything that upset him. He was dealing with a serious medical issue, side effects, and personal issues. I have no doubt that you were nothing but supportive. Maybe you and I should chat (privately) about this though b/c I can really relate.

@SuzieSam, I don't think anyone knows, and it's probably not wise to speculate, but I hope it was quick. I know that he was suffering terribly, and under incredible, multiple stresses. Yet he would always reply, up until the last day or two, when it became too difficult for him to do so.

I agree here, too, that we should not speculate and that only Justin and God know what happened on his last day. He had multiple stresses and he fought a hard battle.

So as @Gingergrrl and others have said, the only good thing is that he's at peace...no longer suffering.

That is how I am trying to look at it although I remain so sad when I think of his son growing up without him and not even being able to have the conversations with him that you and I did.

 

[SuzieSam]

No words.

 

[Sushi]

In the midst of such a terribly difficult time of grieving, Justin's parents have sent thank you letters to everyone who donated to the Open Medicine Foundation in his name. How touching, how thoughtful, how gracious.

If you are reading this, Justin's family, thank you for such a kind gesture. The letter ends with: "You will remain in our hearts forever." We return that.

 

[Barry53]

I am guessing this supporter comment was by the same Justin. What does it take for people to listen?

RIP Justin Noble. And heartfelt condolences to his family.

 

[erin]

I remember his very first post in PR. I thought this is a young person and he had it so severe. It was so obvious that he was suffering immensely. Apart from an occasional like we never exchanged any conversation. But I knew he had it so bad, I was aware that he was desperate. Which makes me sad and very angry at the same time. I find it difficult to write about Justin30's tragic death. Words are not enough, a life is gone, a young life with so much suffering...

 

[maybe some day]

I just joined the other day and started reading these threads. I didnt know him, but so sad the suffering that he went through. He is in a better place where there is no sickness. Heart goes out to his family and hope they are at peace.