Laura Hillenbrand: Leaving frailty behind

[mango]

Stanford Medicine: Leaving frailty behind -- A conversation with Laura Hillenbrand

Interview, text + audio (44 minutes)

Recently, Hillenbrand has made a lot of changes in her medical treatments and in her life. There’s optimism in her voice and a sense of wonderment at new beginnings. A big one is a move across the country to be with her boyfriend in Oregon, where she finds solace in afternoon car rides with views of resplendent Mount Hood.

For this special issue of Stanford Medicine on well-being, we were curious: What does the word “well” mean to someone who has been unwell for so long? Executive editor Paul Costello spoke with Hillenbrand about her illness, her newfound strengths and how she is leaving frailty behind.

http://stanmed.stanford.edu/2016summer/leaving-frailty-behind.html

Well worth a read!

 

[Sasha]

Wow...

 

[Gingergrrl]

Agreed re: Wow! I wonder what treatments she did to have such a great improvement! She deserves so much happiness and am thrilled she has a new boyfriend and moved across country and is feeling better! That made my day. She is one of my heroes.

 

[justy]

Yes I also wonder what treatments she has been doing. Im so happy for her, but the article makes it sound as though all she needed was the courage to change her life and that she did a kind of car based GET in order to get out of her house and travelling again. Im pretty sure it wasn't that easy- but I would like to know what else helped her.

 

[PDXhausted]

It's quite a contrast-- reading this lovely interview with Hillenbrand by the chief communications officer of Stanford's school of medicine, and then compare that with the statement released from QMUL's PR department yesterday, along with all their tribunal evidence.

Two well known schools of medicine portraying very different views of ME/CFS patients.

 

[ME_guy]

Thanks for the note about this! The podcast audio link on the interview Web page is after a few introductory paragraphs, just under the small heading "Extra." I definitely will listen during a drive this afternoon.

Interview, text + audio (44 minutes)

http://stanmed.stanford.edu/2016summer/leaving-frailty-behind.html

 

[Gingergrrl]

Yes I also wonder what treatments she has been doing. Im so happy for her, but the article makes it sound as though all she needed was the courage to change her life and that she did a kind of car based GET in order to get out of her house and travelling again. Im pretty sure it wasn't that easy- but I would like to know what else helped her.

Agreed and I would like to know, too! I'm guessing she wanted to keep her treatment private or she had a true miracle with some kind of spontaneous remission! But it did make it sound like just willpower and "car GET" (I like that LOL!) made her well and she was so sick, she had to sit for her wedding and miss her own reception. So I agree, it is strange but am really happy for her, too.

 

[justy]

Agreed and I would like to know, too! I'm guessing she wanted to keep her treatment private or she had a true miracle with some kind of spontaneous remission! But it did make it sound like just willpower and "car GET" (I like that LOL!) made her well and she was so sick, she had to sit for her wedding and miss her own reception. So I agree, it is strange but am really happy for her, too.

I know lots of people want to keep medical details private, but it always ends up with ME with it looking like a miracle of some kind and reinforces the belief that its possible to get well with will power.

Anyway im totally happy for her - its amazing news to have an increase in function.

 

[Gingergrrl]

Agreed @justy with everything you said above.

 

[SB_1108]

Honestly, I was pretty disappointed with the interview... I came away thinking that sheer willpower and "pushing" beyond ones comfort level is all that is needed to be somewhat well again. I would have preferred more discussion on her actual treatment(s) and less about doing more = feeling better. Its just difficult knowing that I've personally pushed myself until I was in the emergency room. And I've never been able to "teach my brain to tolerate" the symptoms.

That said, I am very happy for Laura and I really appreciate that she is raising awareness. I wish her all the best!

 

[justy]

If I get a good increase in functioning from medical treatment you can be sure I will tell EVERYONE about it.

 

[Snowdrop]

I am very happy for LH. She must be a very private person.

Over the decades there has been very little about her beyond a personal story of how she got ill. It's almost as if she wants to keep her distance from being recognised as part of a larger group of people with this condition. Which is her right of course.

She may do things incognito we'd never know but it is dispiriting when someone with a high profile shares news and it comes out sounding like the usual 'special people with real determination and willpower get well' It does plug into the kind of stories she's written. Maybe that's why the emphasis.

But yeah, I'll sign the pledge to share whatever treatment makes me well.
May that day be very soon for us all.

 

[Strawberry]

Fantastic and inspiring story!

When I saw the picture of her laying on the horse I had to laugh. I did that exact same thing. Once. Then someone else in my group spurred their horse, and mine took off with him. I nearly lost my ability to carry children that day! But thankfully I was eventually able to, and have a wonderfully intelligent and gorgeous 21 year old.

 

[perrier]

I think it would have been kind to mention the treatments. The illness is so disabling for thousands, locked in their homes unable to ride the country. I am very happy for this turn about, but this interview reinforces the idea that you just need to push yourself. This is not the case at all. I have a brilliant daughter, a high achiever, who tried this several times, only to become so ill we didn't know if she would survive. Certainly love energizes, but there is incomplete information here which just adds to confusion.

 

[Jennifer J]

Leaving frailty behind
A conversation with Laura Hillenbrand
This interview was condensed and edited by Paul Costello

I wonder about what was condensed and edited out.

My initial reaction last night was:

Oh, the CBT, GET, psych docs, CDC, etc, are going to love that article. Would have liked to have read it before it was edited and for the title to be different.

I'm happy Laura is doing better but also was discouraged reading this for the reasons others have mentioned... and that it is in Stanford Medicine.

Edit: Meant to say disappointed instead of discouraged.

 

[Groggy Doggy]

I
She may do things incognito we'd never know but it is dispiriting when someone with a high profile shares news and it comes out sounding like the usual 'special people with real determination and willpower get well' It does plug into the kind of stories she's written. Maybe that's why the emphasis.
.

My take away from the story is that is took a combination of new treatments, determination, risk, and detailed planning to make some changes in her life. She is still ill, but is now less ill. I think she is courageous for being public about her experience. She comes across as a believable person.

 

[Groggy Doggy]

If I get a good increase in functioning from medical treatment you can be sure I will tell EVERYONE about it.

Agree. And as we feel a bit better, with treatments, we will be able to 'test the waters' and do a bit more. Recovery from a debilitating chronic illness is a long process filled with ups and downs.

 

[Gingergrrl]

If I get a good increase in functioning from medical treatment you can be sure I will tell EVERYONE about it.

Yes, me too, and this is actually part of what motivates me to keep trying. I will share exactly what I did, even if it only helps one other person on earth, I will feel I accomplished something. This is NOT a criticism of Laura, just my own worldview. I don't want my suffering to be for nothing. I hope I phrased this the way that I hear it in my mind and it is not a criticism of anyone.

 

[perrier]

Yes, me too, and this is actually part of what motivates me to keep trying. I will share exactly what I did, even if it only helps one other person on earth, I will feel I accomplished something. This is NOT a criticism of Laura, just my own worldview. I don't want my suffering to be for nothing. I hope I phrased this the way that I hear it in my mind and it is not a criticism of anyone.

Actually, Gingergrrl, don't worry about criticism. If someone can't stand the heat, they should stay out of the kitchen. Your points are well taken. The more I think if the interview the more disappointing and even irresponsible I find it.

 

[Groggy Doggy]

Yes, me too, and this is actually part of what motivates me to keep trying. I will share exactly what I did, even if it only helps one other person on earth, I will feel I accomplished something. This is NOT a criticism of Laura, just my own worldview. I don't want my suffering to be for nothing. I hope I phrased this the way that I hear it in my mind and it is not a criticism of anyone.

I think Laura's suffering will help many people. Just to have a highly respected person talk about ME is a big win for us. She validates many things that we are protesting about (that usually falls on deaf ears).