AndyPR
Senior Member
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Probably best to wait until your at least on the flight back then, that way they won't be able to get you...
I still have to write about you and Ron
B
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Ben and Claire's adventure to Davis-Dafoe land!
- Thread starter Ben H
- Start date
Probably best to wait until your at least on the flight back then, that way they won't be able to get you...
Exactly my thinking
B
Sushi
Moderation Resource Albuquerque
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@Ben Howell Totally irrationally, I'm shouting: "Don't go!" You see we USAers have adopted you and Claire--the papers have already been filed.
@Ben Howell Totally irrationally, I'm shouting: "Don't go!" You see we USAers have adopted you and Claire--the papers have already been filed.
Im all good with that!
B
Just honest
.
Mary
Moderator Resource
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- Southern California
@Ben Howell Totally irrationally, I'm shouting: "Don't go!" You see we USAers have adopted you and Claire--the papers have already been filed.
I'm with @Sushi! plus, we are just getting over our drought in California - you can't leave us now!
@Ben Howell , thank you so much for taking us along on your journey with Claire. I showed my sister your thread and she was blown way and I think began for the first time to really get a glimpse of ME/CFS world. Travel safe
(you are a fabulous writer, no doubt!
)
Gingergrrl
Senior Member
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- 16,171
Absolutely beautiful what you wrote, Ben, and thank you for sharing it with us. I continue to pray for Whitney every day.
They are leaving today. So sad!
How sad, and I will miss this thread and all of the adventures and memories that it contained.
Im all good with that!
Does that mean you might be coming back for treatment and we'll have a part 2 of this thread?... only if you are allowed to say of course!
I'm with @Sushi! plus, we are just getting over our drought in California - you can't leave us now!
Agreed @Mary!
(you are a fabulous writer, no doubt!
Agree on this, too, and I think Ben will be a professional writer one day (in addition to your work w/OMF of course)!
Jennifer J
Senior Member
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- Southern California
Bye, @Ben Howell and Claire. Thank you so much for using your energy to share with us your adventures in Davis-Dafoe land. We in California miss you both already. Really the whole U.S. does!
You truly are a talented writer! Thanks for bringing so much joy and hope and honesty to everyone (as they say these days - for keeping it real) and making our community family feel even closer.
I'm looking forward to your next trip. Perhaps things will be different and Northern and Southern CA will be closer and we all will have more health.
I dream of the day when all of us in the community can meet, dance, eat and have a party. That there will be a cure or treatment and we can move on to other things maybe many still working to change all that we've run into that is affecting others fighting different, and the same, battles.
I'm so happy you came here. Look forward to hearing more as you are able. Rest and take good care.
Edit: added two words & changed @Ben (opps) to @Ben Howell
You truly are a talented writer! Thanks for bringing so much joy and hope and honesty to everyone (as they say these days - for keeping it real) and making our community family feel even closer.
I'm looking forward to your next trip. Perhaps things will be different and Northern and Southern CA will be closer and we all will have more health.
I dream of the day when all of us in the community can meet, dance, eat and have a party. That there will be a cure or treatment and we can move on to other things maybe many still working to change all that we've run into that is affecting others fighting different, and the same, battles.
I'm so happy you came here. Look forward to hearing more as you are able. Rest and take good care.
Edit: added two words & changed @Ben (opps) to @Ben Howell
Last edited:
hmnr asg
Senior Member
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- 563
Hi @Ben Howell , thank you for sharing your story!
I live in San Jose and I wish i had seen this thread earlier! I would have been more than happy to help in any way that I can (pick you up from airport etc).
I have also visited with Dr Chheda at the OMI and I am waiting for a more opportune time to write my experience on the forum. From what i read from your post i think we both may have had a similar experience. I found her very kind and interested in helping me.
Good luck mate and I hope you come back here again!
I live in San Jose and I wish i had seen this thread earlier! I would have been more than happy to help in any way that I can (pick you up from airport etc).
I have also visited with Dr Chheda at the OMI and I am waiting for a more opportune time to write my experience on the forum. From what i read from your post i think we both may have had a similar experience. I found her very kind and interested in helping me.
Good luck mate and I hope you come back here again!
Gingergrrl
Senior Member
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Comet
I'm Not Imaginary
- Messages
- 694
*Waves at plane as you fly over NY.* Bye @Ben Howell and Claire.
Thanks so much for sharing your adventures. I very much enjoyed reading about your trip.
Ben, I hope you got your 5% and more! I think you are very brave.
for everyone, and special for Whitney.
Looking forward to reading more when you are settled in back home.
In my lottery-winning dreams, I dream of creating free housing and transportation to medical facilities for those in similar situations to ours. And a big party for us to all meet sounds wonderful too!
Thanks so much for sharing your adventures. I very much enjoyed reading about your trip.
Ben, I hope you got your 5% and more! I think you are very brave.
for everyone, and special for Whitney.Looking forward to reading more when you are settled in back home.
In my lottery-winning dreams, I dream of creating free housing and transportation to medical facilities for those in similar situations to ours. And a big party for us to all meet sounds wonderful too!
Hey guys,
Back in UK. Heathrow was a nightmare so recovery needed but will post 'Part 10' when I can. It'll feature Janet and Ron
Thankyou all for your lovely messages. They really mean a lot. I was gutted to leave Janet, Ron and California. Beautiful, beautiful place.
So yep. Some r+r and I'll be back on it!
B
Back in UK. Heathrow was a nightmare so recovery needed but will post 'Part 10' when I can. It'll feature Janet and Ron
Thankyou all for your lovely messages. They really mean a lot. I was gutted to leave Janet, Ron and California. Beautiful, beautiful place.
So yep. Some r+r and I'll be back on it!
B
Welcome back to Europe! Looking forward to reading part 10, will miss this thread. Wish we always had a daily correspondent at Janet and Ron's. I wondered what "r+r" meant and googled it. Now I know and additionally learnt that there are surprisingly many r+r's out there, in case someone finds useless knowledge as amusing as I do: https://en.wikipedia.org/wiki/R&R
Lots of r+r for you, Ben!
TreePerson
Senior Member
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- 292
- Location
- U.K.
Its good to know you are safely back and thank you so so much for taking us all with you. I feel happy and hopeful knowing that you will be bringing some of your natural sunshine and some of the Davis/Dafoe strength of will, optimism and sheer belief back with you. Rest well. The sun is shining Spring is on its way.
Rest well. The sun is shining Spring is on its way.Part 10:
Davis Dafoe
So, Im writing the post after having settled back in the UK for a week, a little later than I intended. And one things is abundantly clear: I really miss Janet and Ron. Its hard to write this post without lathering unending, genuine praise on both of them, but I feel I need to somewhat because that reflects their characters and inherent goodness. So, lets get started.
Janet in three words: Force of Nature.
Janet is one of the most interesting and intelligent people I have ever met. Its easy for this to go unseen from the outside, with Prof Davis's scientific credentials, but its easy to forget Janet herself has a Phd from Stanford. She is extremely bright, and sharp.
Janet's love for literature is evident from her beautiful book collection and library. She has a love for the arts-music, paintings, literature-you name it, Janet either is interested in it or knows something about it. She always has an interesting story to tell, and much of my visit involved listening to these great stories.
She also incidentally is my go to person for Scottish impressions and impromptu campfire songs delivered with vigor and gusto along with the expectation that I will somehow join in!
One day while I was with Ron in study, his phone rang with the ringtone 'Handel-Water music'. Immediately I turned to Ron and said 'thats Janet isn't it?'. He replied 'Yep' grinning. I remember laughing, as for some reason it fits Janets character so well...
Janet also happens to be the bluntest person I have ever met. She doesn't spare words and many a time when I first knew her I was taken back a little. Now I know her, I find it refreshing and at times very funny. While I was over, I had the pleasure (strong sarcasm) of dealing with CVS pharmacy, and was in the process of leaving a voicemail when Janet-clearly fed up with my wittering on-grabbed the phone and finished the voice message with something along the lines of "he needs this medication now, you need to get it to him now, so sort this out now". I took the phone back and muttered something like "er, thanks", and promptly hung up! She gets stuff done, for sure.
Janet also has an infectious laugh and great sense of humour. I lost count how many times she had me and Claire laughing while we were over. One example of this is the following. Picture a quiet Saturday evening; Ron is working on his laptop whilst Claire and I are talking with Janet. Earlier in the day Janet had shown us this article (warning NSFW!)
http://www.languagejones.com/blog-1...gibbon-i-argue-its-not-entirely-about-gibbons
"Ron did I show you this?" Janet suddenly exclaims. She then proceeds to read verbatim outloud from the entire article, to Ron, whilst myself and Claire are wetting ourselves with laughter. Its probably something you had to be there for, but still, hilarious.
Quite a good reflection of Janet-love of literature with a side dose of humour. The whole time we were over she looked after myself and Claire with compassion and love and for that we are eternally grateful. Additionally she did all this while simultaneously looking after Whitney, staying up till the early morning hours, every single day. Truly an amazing lady.
Now over to Ron...
Ron in three words: Gentle, selfless, genius.
Prof. Davis, Dr Davis as we know him. Gruber award winning scientist, Distinguished Alumni from Caltech-the list goes on and on-his reputation precedes him. But when I was over it was simply 'Ron'.
One thing that was instantly noticeable is that he is always working. Always working for us. Whether it be working at the Genome centre, working at home from his laptop on research, or sorting Whitneys medications, he just doesn't stop. It is simply extraordinary and not at all hyperbole.
Many times it is evident visually that his mind is working. He is very serious, but extremely good natured and so selfless and kind. One humourous point that reflects this is my certain liking to diet Dr Pepper. Its a rare treat/vice for me and fairly hard to get in England. I mentioned that I liked it but had run out, and within 5 minutes Ron was out the door to get some. I felt so guilty! They said they needed something from CVS too, but Im not convinced. So here I am, and because I said I liked something, Ron went out of his way to being me back a giant case of it. It sounds silly but I was really touched. Prof. Ron Davis just bought me Dr Pepper! Hopefully we helped pay him back with some really great LN2 icecream from downtown. I think he enjoyed that. But still, I think the above says a lot about him.
Which leads on to selflessness. In the entire time we were over, myself and Claire both noticed that Ron did absolutely nothing for himself. As I've mentioned he is always working. Working for us. I really do not know how he does it. Nor do many of the other people I have spoken to. If you get anything from my esoteric blatherings know this-there is no researcher working harder for the cause than Ron.
We had many conversations while I was over about the science, and they way that Ron thinks is truly extraordinary. Incredibly open minded, logical, systematic. Its not hard to see why he achieved so much success with the Human Genome Project and all of his other endeavours. In my opinion, he is the perfect scientist for this illness, and we are so lucky to have him. Hopefully that is apparent in the recent videos that have been posted. We have agreed that when the cause and cure is found, he will launch the stomp rocket I bought him (my odd sense of humour) through the atrium at Stanford Genome Tech Centre. Sounds good.
But for his serious side there is a wonderful sense of humour and like Janet his laughter is infectious with a wonderful smile. On the surface Janet and Ron's personalities seem to be almost opposite, but there is a tangible connection between them that just works extremely well.
Janet is involved discussing the research, not as a scientist but almost as a co-pilot, lending her many skills to Ron, which works so well. I witnessed this on multiple occasions and the team that they so clearly are is a perfect synergy. So for all Ron's undeniable brilliance, I am so grateful we have Janet there helping navigate this incredibly difficult illness. They say behind every great man there is a great woman-and this could not be more true here.
So wrapping up, I'd like to say a huge thankyou from both myself and Claire for everything you did for us, and are doing for the community. We all love you so much-but you know that already.
B
Davis Dafoe
So, Im writing the post after having settled back in the UK for a week, a little later than I intended. And one things is abundantly clear: I really miss Janet and Ron. Its hard to write this post without lathering unending, genuine praise on both of them, but I feel I need to somewhat because that reflects their characters and inherent goodness. So, lets get started.
Janet in three words: Force of Nature.
Janet is one of the most interesting and intelligent people I have ever met. Its easy for this to go unseen from the outside, with Prof Davis's scientific credentials, but its easy to forget Janet herself has a Phd from Stanford. She is extremely bright, and sharp.
Janet's love for literature is evident from her beautiful book collection and library. She has a love for the arts-music, paintings, literature-you name it, Janet either is interested in it or knows something about it. She always has an interesting story to tell, and much of my visit involved listening to these great stories.
She also incidentally is my go to person for Scottish impressions and impromptu campfire songs delivered with vigor and gusto along with the expectation that I will somehow join in!
One day while I was with Ron in study, his phone rang with the ringtone 'Handel-Water music'. Immediately I turned to Ron and said 'thats Janet isn't it?'. He replied 'Yep' grinning. I remember laughing, as for some reason it fits Janets character so well...
Janet also happens to be the bluntest person I have ever met. She doesn't spare words and many a time when I first knew her I was taken back a little. Now I know her, I find it refreshing and at times very funny. While I was over, I had the pleasure (strong sarcasm) of dealing with CVS pharmacy, and was in the process of leaving a voicemail when Janet-clearly fed up with my wittering on-grabbed the phone and finished the voice message with something along the lines of "he needs this medication now, you need to get it to him now, so sort this out now". I took the phone back and muttered something like "er, thanks", and promptly hung up! She gets stuff done, for sure.
Janet also has an infectious laugh and great sense of humour. I lost count how many times she had me and Claire laughing while we were over. One example of this is the following. Picture a quiet Saturday evening; Ron is working on his laptop whilst Claire and I are talking with Janet. Earlier in the day Janet had shown us this article (warning NSFW!)
http://www.languagejones.com/blog-1...gibbon-i-argue-its-not-entirely-about-gibbons
"Ron did I show you this?" Janet suddenly exclaims. She then proceeds to read verbatim outloud from the entire article, to Ron, whilst myself and Claire are wetting ourselves with laughter. Its probably something you had to be there for, but still, hilarious.
Quite a good reflection of Janet-love of literature with a side dose of humour. The whole time we were over she looked after myself and Claire with compassion and love and for that we are eternally grateful. Additionally she did all this while simultaneously looking after Whitney, staying up till the early morning hours, every single day. Truly an amazing lady.
Now over to Ron...
Ron in three words: Gentle, selfless, genius.
Prof. Davis, Dr Davis as we know him. Gruber award winning scientist, Distinguished Alumni from Caltech-the list goes on and on-his reputation precedes him. But when I was over it was simply 'Ron'.
One thing that was instantly noticeable is that he is always working. Always working for us. Whether it be working at the Genome centre, working at home from his laptop on research, or sorting Whitneys medications, he just doesn't stop. It is simply extraordinary and not at all hyperbole.
Many times it is evident visually that his mind is working. He is very serious, but extremely good natured and so selfless and kind. One humourous point that reflects this is my certain liking to diet Dr Pepper. Its a rare treat/vice for me and fairly hard to get in England. I mentioned that I liked it but had run out, and within 5 minutes Ron was out the door to get some. I felt so guilty! They said they needed something from CVS too, but Im not convinced. So here I am, and because I said I liked something, Ron went out of his way to being me back a giant case of it. It sounds silly but I was really touched. Prof. Ron Davis just bought me Dr Pepper! Hopefully we helped pay him back with some really great LN2 icecream from downtown. I think he enjoyed that. But still, I think the above says a lot about him.
Which leads on to selflessness. In the entire time we were over, myself and Claire both noticed that Ron did absolutely nothing for himself. As I've mentioned he is always working. Working for us. I really do not know how he does it. Nor do many of the other people I have spoken to. If you get anything from my esoteric blatherings know this-there is no researcher working harder for the cause than Ron.
We had many conversations while I was over about the science, and they way that Ron thinks is truly extraordinary. Incredibly open minded, logical, systematic. Its not hard to see why he achieved so much success with the Human Genome Project and all of his other endeavours. In my opinion, he is the perfect scientist for this illness, and we are so lucky to have him. Hopefully that is apparent in the recent videos that have been posted. We have agreed that when the cause and cure is found, he will launch the stomp rocket I bought him (my odd sense of humour) through the atrium at Stanford Genome Tech Centre. Sounds good.
But for his serious side there is a wonderful sense of humour and like Janet his laughter is infectious with a wonderful smile. On the surface Janet and Ron's personalities seem to be almost opposite, but there is a tangible connection between them that just works extremely well.
Janet is involved discussing the research, not as a scientist but almost as a co-pilot, lending her many skills to Ron, which works so well. I witnessed this on multiple occasions and the team that they so clearly are is a perfect synergy. So for all Ron's undeniable brilliance, I am so grateful we have Janet there helping navigate this incredibly difficult illness. They say behind every great man there is a great woman-and this could not be more true here.
So wrapping up, I'd like to say a huge thankyou from both myself and Claire for everything you did for us, and are doing for the community. We all love you so much-but you know that already.
B
Last edited:
Jenny TipsforME
Senior Member
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- 1,184
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- Bristol
Thanks Ben Howell you are an excellent correspondent! We're happy to welcome you back to the UK
It sounds like you're doing alright?
It sounds like you're doing alright?
Gingergrrl
Senior Member
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- 16,171
Ben, thank you so much for this beautiful post and I can picture what you describe in my mind, you are such a good writer!
Yep, can relate to this well...
Yep, relate to this too LOL.
I was wondering the same thing as Jenny and am hoping that you will be able to continue w/Dr. Chheda's treatment plan from the UK?