Special friend remembered

[taniaaust1]

Thanks Dreambirdie.

In a way it seems kind of pointless, Lynda is gone. It won't do anything for her.

But I know all of us chronics have that thing lurking, that we could vanish and nobody would know or care. And I could make sure people knew about her..

I personally dont agree with that statement that it didnt do anything for her. Her last moments if she truely was ready to stop living, were probably ones of relief knowing she wasnt going to have to be dealing with this no more. Knowing she wouldnt have to be finding the energy to keep fighting this day by day, year by year. Her death probably didnt help you (Im sorry for your loss), but may of actually helped her.

I hope she passed in some peace with also knowing that you werent going to allow her to just be forgotten. Due to that I personally think her knowing you wouldnt allow her to just "vanish" , knowing that someone would probably share her story, would of eased some of the emotional pain she would of felt on passing.

I carry the same wish of not being forgotten if this illness ever gets the better of me and someone doing what you did for her... so thou I dont know her, would like to say thank you to you for her. Sounds like you were such a great friend.

It would be great if her story went very public... a great highlight of what many face with doctors etc.

Other general practitioners would not take her on as a patient because she had so much wrong with her.

Some GPs have refused too to take me on on that ground of having too much wrong so they dont want to be dealing with me .. while another doctor declared there was "nothing at all wrong with you". Its truely an irronic situation out there.

 

[Jody]

(((((((nielk))))))) how sad...you, your friend and her family and friends said a prayer for to heal....

such a sad story....but sounds all to fimilair for alot : (

you seem like a great kind and caring person and im sure your communications with her however it was meant alot to her and helped brighten her days....

im glad she had the computer if it werent for computers and being able to lay back chair etc...alot of us coulndt talk to anyone who understands...and of course lap tops to lay in bed...

just very very sad...so young.....the picture of her is so beautful...

Hurtingallthetimet,

Unfortunately Lynda had a computer but no longer had the cognitive ability to use it. So she was even more isolated than most of us.

I'm glad you liked the picture. That isn't Lynda, who was 63 when she died. It is a photo that I chose from the stock photo company used by the online women's website EmpowHER that I work for. I don't have a photo of Lynda, never got to see one of her, so don't know what she looked like.

Thank you for your kind response.

 

[Jody]

Jody, What a beautiful tribute. You did your friend proud. I cried when I read it. That could be so many of us.

I wonder though, what do you think of making it more public? For example putting it in a newspaper and/or perhaps sending a copy to politicians. That would certainly be a way to make sure she was remembered and her life and the difficulties she faced had plenty of meaning? I don't want to exploit the tragedy but given her desire to be remembered and the unacceptable way she was mistreated, might you consider something? Just putting it out there.

Aileen,

I published this article on EmpowHER, the online women's health website that I work for. I have received a request from someone here in Canada who has access to a PM, so she is trying to see if something can be done to bring more exposure to the issue and to Lynda's particular situation. Another person in the U.S. has asked permission to submit and perhaps read my article for some type of Department of Health meeting. I thanked her and gave her permission.

If anyone else wants to make Lynda more known in any respect, let me know.

 

[Jody]

Thanks for sharing Nielk. I feel sad for her, and you, as well as angry about how she was treated, but most of all, i feel relieved that she had you as a friend.

Snowathlete,

Nielk was kind enough to post my article here about my friend Lynda.

Thank you for your kind thoughts.

 

[Jody]

Beautiful tribute from a real friend. It was so sad though that anyone should face death with such little care from those who should have. It's utterly heartbreaking.
Perhaps the fact that this is yet another such story that is out there will one day prevent someone else having to face death in such a way.

Shell,

That is our hope, that telling Lynda's story will make a difference for someone else one day.

Thanks for your response.

 

[Jody]

I personally dont agree with that statement that it didnt do anything for her. Her last moments if she truely was ready to stop living, were probably ones of relief knowing she wasnt going to have to be dealing with this no more. Knowing she wouldnt have to be finding the energy to keep fighting this day by day, year by year. Her death probably didnt help you (Im sorry for your loss), but may of actually helped her.

I hope she passed in some peace with also knowing that you werent going to allow her to just be forgotten. Due to that I personally think her knowing you wouldnt allow her to just "vanish" , knowing that someone would probably share her story, would of eased some of the emotional pain she would of felt on passing.

I carry the same wish of not being forgotten if this illness ever gets the better of me and someone doing what you did for her... so thou I dont know her, would like to say thank you to you for her. Sounds like you were such a great friend.

It would be great if her story went very public... a great highlight of what many face with doctors etc.

Some GPs have refused too to take me on on that ground of having too much wrong so they dont want to be dealing with me .. while another doctor declared there was "nothing at all wrong with you". Its truely an irronic situation out there.

Taniaaust1,

Thanks for the things you've said. I'd like to think that I helped her to feel less alone. And I know that if she knew about the wide response to her article, that she would be pleased. I know she would be astonished, after having been so forgotten for so long.

I also hope that she had some peace when she passed away, life had been so hard for so long, and she'd given up hope that things could ever get any better for her. I am sure it was a relief in many ways.

I'm sorry to hear that you've been shunted off by doctors for being too sick. How ironic when this happens, but I guess it happens alot. Greater irony when others say there is nothing wrong with you. What kind of craziness is out there.

 

[K2 for Hope]

Jody, I must tell you that I cried when I read your touching story of your friend. It could have been any one of us. I also bookmarked the website as it seems to be very worthwhile.

I actually read it before I saw this post...

I only hope I have a friend like you when I'm gone...

 

[Jody]

Jody, I must tell you that I cried when I read your touching story of your friend. It could have been any one of us. I also bookmarked the website as it seems to be very worthwhile.

I actually read it before I saw this post...

I only hope I have a friend like you when I'm gone...

K2 for Hope,

I appreciate your tears. I think for all of us there is the underlying realization that it could be any of us. We all know that fear of going out without a ripple.

EmpowHER is a good website, if I do say so myself. I feel fortunate to be able to work there.

I hope you are around for a long time and have the chance to have a full life.

 

[hurtingallthetimet]

Hurtingallthetimet,

Unfortunately Lynda had a computer but no longer had the cognitive ability to use it. So she was even more isolated than most of us.

I'm glad you liked the picture. That isn't Lynda, who was 63 when she died. It is a photo that I chose from the stock photo company used by the online women's website EmpowHER that I work for. I don't have a photo of Lynda, never got to see one of her, so don't know what she looked like.

Thank you for your kind response.

{{{{{jody}}}}}}}} i appoligize...my eyes arent that great and my mind either and i completely didnt understand when i read the first post that it was made by you....

how sad she was so isolated....

 

[Jody]

{{{{{jody}}}}}}}} i appoligize...my eyes arent that great and my mind either and i completely didnt understand when i read the first post that it was made by you....

how sad she was so isolated....

No worries, I can see where the confusion might come from. I wrote it, Nielk posted it. Your response was genuine and appreciated.

 

[K2 for Hope]

I have been thinking of what I could do to help others now that I'm retired/disabled.
I would love to travel around the country and visit people that need company. Then post it to a blog or pinterest. Get us out there so we are not just empty faces.

 

[Jody]

I have been thinking of what I could do to help others now that I'm retired/disabled.
I would love to travel around the country and visit people that need company. Then post it to a blog or pinterest. Get us out there so we are not just empty faces.

What a great desire. That would be a wonderful way to make a difference, and it would be fulfilling for you and the people you visited.

I have often thought that one day I would like to build a community where chronics in need could live and those of us who are healthier could take care of them, financially, physically and emotionally. So often, just having someone in the neighbourhood who will visit and take care of some things would make all the difference.

Your plan sounds much more doable.

 

[K2 for Hope]

Yes, I have that same vision often. Oh, to win the lottery....

Seriously, we could pool our money. Live like a commune, but, we would all be happier and we all know the pain the other one is going through...

 

[taniaaust1]

hopefully someone will add her name to the ME/CFS memorial list

 

[Shell]

Jody Please may I post this story on my blog to raise awareness?

 

[Nielk]

hopefully someone will add her name to the ME/CFS memorial list

Tania,

Where is that list?

 

[Nielk]

I just read some of the posts here and I'm sorry if some thought that this was MY story.

I just posted JODY's story with Jody's permission.

 

[Nielk]

Reading this thread now makes me realize how fortunate we are that we do have the capabilities to use the internet and be in touch with each other.
This support is HUGE, especially for people who are otherwise isolated.
To suffer so much is horrible but, to have to suffer alone and isolated is the worst.

 

[Jody]

Yes, I have that same vision often. Oh, to win the lottery....

Seriously, we could pool our money. Live like a commune, but, we would all be happier and we all know the pain the other one is going through...

Lottery would be good.

Commune could be good.

 

[Jody]

Tania,

Where is that list?

hopefully someone will add her name to the ME/CFS memorial list

Tania, Nielk,

I'm not familiar with this list.