Hillary Johnson GONE?

Dr. Yes

Dr. Yes

Shame on You
Messages
868
She deserves a lot more than that, mate...

And I had just written a little blurb in her blog for the first time..Didn't think it would be her last! There was certainly no indication in any of her comments there that she was gonna take off.

Yes, we owe her a lot, but what bugs me is WE STILL NEED HER!!
 
Kati

Kati

Patient in training
Messages
5,497
that is terrible news for us. I wish there was a way to get her to change her mind. we need her.
 
M

MEKoan

Senior Member
Messages
2,630
There is reason to suppose she will be back to her blog in the future and no reason to suspect whatever she is working on now is not ME/CFS related. She only said she would not be blogging.

But, if she needs to write about something else for a while, as she did about her mother and her mother's passing, well, we will be enriched by that, too. Like us, Hillary must have an inner life which extends beyond this illness sometimes or it would take her soul.

We will be here when she returns to us.
 
Lily

Lily

*Believe*
Messages
677
HJ

Perhaps she needs a little R&R for herself in order to be her best to see us through.....
 
Q

Quilp

Senior Member
Messages
252
Love from Quilp

We suffered agonising pain, left to feel more dead than alive, whilst the weeks rolled into months, the months rolled into years, and the psychiatrists rolled into town. Five year action plans, contaminated with a toxic dish of egos and internal politics were served time and time again. We're dying, and without the dignity afforded to others. Someone do something, please ! Well someone did do something, and her name is Hillary Johnson.

Criticised for perhaps being overly zealot or critical, for not being more pragmatic; Yes, well, maybe, but how many of us needed that influence to be angry, to criticise, to lambast, to fight. She's a street fighter, an ally cat, a tasmanian devil who's will has been forged in the deepest recesses of her soul and fuelled by the passions of overwhelming injustices. She is an unstoppable force fighting an immovable object.

Some of us have not lived a meaningful life, and some of us may not have long to live. They say that even a drowning man will clutch the smallest of straws. For many she was that straw, but a straw nonetheless like no other; for how many would follow her to the ends of the earth.

Thank you Hillary xxx
 
annunziata

annunziata

Senior Member
Messages
113
Location
Hudson Valley
Quilp said:
We suffered agonising pain, left to feel more dead than alive, whilst the weeks rolled into months, the months rolled into years, and the psychiatrists rolled into town. Five year action plans, contaminated with a toxic dish of egos and internal politics were served time and time again. We're dying, and without the dignity afforded to others. Someone do something, please ! Well someone did do something, and her name is Hillary Johnson.

Criticised for perhaps being overly zealot or critical, for not being more pragmatic; Yes, well, maybe, but how many of us needed that influence to be angry, to criticise, to lambast, to fight. She's a street fighter, an ally cat, a tasmanian devil who's will has been forged in the deepest recesses of her soul and fuelled by the passions of overwhelming injustices. She is an unstoppable force fighting an immovable object.

Some of us have not lived a meaningful life, and some of us may not have long to live. They say that even a drowning man will clutch the smallest of straws. For many she was that straw, but a straw nonetheless like no other; for how many would follow her to the ends of the earth.

Thank you Hillary xxx
Click to expand...

Golly, Quilp, that was beautiful and poignant. It has only just dawned on me that this disease may take my life before very much longer. It certainly inflicted years of a living death. I have some partial remission now, for which I am very thankful, while it lasts. I have always loved Hillary Johnson's feistiness and militantly impassioned stance. People have a right to be angry about this disease and the disgraceful history of its mishandling by federal health agencies. She has left a superb record of the suffering of patients, and the politics and malfeasance that attended this epidemic.
 
JustJack

JustJack

put on yer dancin' shoes
Messages
53
Location
Sacramento CA
So much help and support here

annunziata said:
Golly, Quilp, that was beautiful and poignant. It has only just dawned on me that this disease may take my life before very much longer. It certainly inflicted years of a living death. I have some partial remission now, for which I am very thankful, while it lasts. I have always loved Hillary Johnson's feistiness and militantly impassioned stance. People have a right to be angry about this disease and the disgraceful history of its mishandling by federal health agencies. She has left a superb record of the suffering of patients, and the politics and malfeasance that attended this epidemic.
Click to expand...

Even being new here, I see many voices that I have followed and read for the last 13 years (was sudden onset mono/Guillian Barre 1978 - held of and on till 1997). I am alone so much of the time, being housebound too and husband working alot and friends forgetting me. Thank you so much annunziata, Quilp.

Sometimes I worry about what I am saying and thinking. I have made so little headway myself, with my doctors, fighting for tests, never getting to Peterson et all because I have no money to speak of. I am too sad way too much of the time, trapped in mourning. I know that it is counterproductive and your voices are literally keeping me going nom. I:cool: was so defeated and yet so stubborn, I know I have been a headache to many many docs.

Thatnk you for supporting Hillary and all she has gone trough for us, I admore her so very much and applaud her for her strength and tenacity. I know what it is to fight the Goliath and I know what it is like to be misunderstood and shut down.

Here's to all of us here, strong voices in the darkness of ME/CFS. Finally we see a ray of light and I for one, will keep spreadding the word in my world as loudly as I can and to however will listen

Thanks so much,
JJ aka Jack in Sac
 
M

MEKoan

Senior Member
Messages
2,630
I just want to thank those posting, so eloquently, on this thread for make the point that dialogue about this illness is not always measured and polite because many of those speaking are desperately fighting for thier lives.

Would any demand a drowning soul be polite and politic in their outcry?

Thank you for speaking your truth with such courage.
 
K

Khalyal

Guest
Hillary

All of Hillary's blogs are still there, it's just the link to them that has been removed. But you can access them, and all of our comments, here:

http://www.oslersweb.com/blog.htm?post=643435

If it weren't for Hillary's epic perserverance and never-back-down attitude, how many of us would have ever known about our own disease? How much easier would it have been to achieve complete psychologization of this illness?

Hillary has never waivered. She has stood strong through all of it, even as she suffered with illness, even as her book became trivialized as "irrelevant" and could be bought on Amazon for 99cents, even as Reeves took giant steps towards reducing us all to stress-incompetent ne'er-do-wells.

Trust that she did not "realize she went too far", and that she is not anywhere near done.
 
Marylib

Marylib

Senior Member
Messages
1,168
Such writers here

You guys can write! So many different styles, such beautiful ways with words.

Thank you for expressing yourselves so freely, so expansively.
 
flybro

flybro

Senior Member
Messages
706
Location
pluto
I hope Hillary is lurking and reading these posts, or she at least knows she is important to us.
 
justinreilly

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Koan said:
I just want to thank those posting, so eloquently, on this thread for make the point that dialogue about this illness is not always measured and polite because many of those speaking are desperately fighting for thier lives.

Would any demand a drowning soul be polite and politic in their outcry?

Thank you for speaking your truth with such courage.
Click to expand...

I too wish there were millions of HJ's. I have read Osler's Web five times. Every time I am awestruck that someone with ME could have reported this and written such a great book. She is a true hero and a rock star! We love you, Hillary.
 
Summer

Summer

Senior Member
Messages
175
WPI Facebook just posted a statement by Hillary Johnson about the UK studies. I love this part:

"This is not a tennis match; it is not a ping pong tournament.
Not all scientific inquries are equal, nor all all scientists."

So glad to see something from Hillary!
 
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