1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Join the National PR Campaign for ME: Power to the Patient (P2tP)
Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients ...
Discuss the article on the Forums.

Article: Its Just the Weather, Baby! Toni Bernhardt's How to be Sick (Blog #3)

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Dec 21, 2011.

  1. CJB

    CJB Senior Member

    Messages:
    743
    Likes:
    387
    Oregon
  2. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    I agree about not finding those cliches about suffering very useful or necessarily accurate.

    I do have to say I don't think losing the ability to work is just an inconvenience. For many it is a matter of survival. It also affects independence, ability to care for one's family, quality of life, access to medical care, and much more. For many can also be very tied up with identity. Loss of any of all of these things can cause tremendous pain and in my opinion can also cause "hard core suffering."
     
    Ember likes this.
  3. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    Of course you both are right :rolleyes:. I believe studies show that people who are better off and have better access to health care tend to be healthier, etc and my guess is that that is true with CFS as well. There are also many people who are well off, have tried everything they can think of, and are still very ill. I don't know if Toni is well-off or not; my guess is that she is (particularly after not being able to contribute financially for years) middle class but she has tried many different therapies and she seems to be roughly the same -her assets - being a professional with a professional working husband haven't helped her at all in getting better. I imagine they have helped her from getting worse, though, - if she had been dirt poor living in a crummy section of town without support - I imagine she would be worse off physically.
     
  4. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,111
    Likes:
    3,364
    N. California
    Hi Ocean--

    I definitely agree with you. Illness is hardly "equalizing." Those who are poor to start out with can end up in absolutely dire straits, even homeless, after becoming ill with a seriously debilitating illness. I know a few people who are literally TOO POOR to get the help they need. It breaks my heart to see the kind of situations they are stuck in due to a lack of money.

    For those who are rich, or privileged enough to have access to decent healthcare, helpful supplements and organic food, illness may initially be a rather humbling wake up call, that reminds them they are more human and vulnerable than they thought. But to call that "equalizing" is a gross exaggeration of reality.

    PWME who have money most certainly are better off than those who don't. It doesn't guarantee that they will recover, but it does make their lives a lot more comfortable and secure.
     
    ahimsa likes this.
  5. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    I wasn't trying to say that simply by virtue of having money or support someone's CFS would improve or even necessarily that their health would be better than someone with less money and resources, although that could certainly be true in some or even many cases. I know I probably did not articulate myself well but the point I wanted to make was that sickness is not an equalizer and that the experience is not the same for those who are more privileged and those who are not. The experience of being ill and trying to receive disability, survive on disability, ensure adequate housing, arrange transportation, eat healthily, and get medical care and take care of your general health while struggling financially and otherwise is very different from the experience of being sick and not having to worry about those things. Not acknowledging that or denying that, as I thought TB did if I interpreted her comments correctly, denies a very significant aspect of having a disabling chronic condition in this country, in my opinion.
     
  6. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Thanks Dreambirdie, my thoughts exactly.
     
  7. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,111
    Likes:
    3,364
    N. California
    Hello CJB--

    So glad you enjoyed TARA BRACH! For anyone who has never heard of her, I highly recommend this hour-long talk she did on illness and suffering. I especially liked and could relate to the parts about HATING your illness and resisting it. http://www.tarabrach.com/audio/2011-03-02-Healing-into-Life-and-Death-TaraBrach.mp3

    Tara is a Buddhist meditation teacher and a therapist, with 35 years of experience. She has struggled with her own health issues, and has a lot of compassion and understanding of how to work with people who are ill. Below is one of the videos from her youtube channel.

    [video=youtube;mNaZxrn6CM4]http://www.youtube.com/watch?v=mNaZxrn6CM4&feature=related[/video]
     
  8. jenbooks

    jenbooks Guest

    Messages:
    1,220
    Likes:
    113
    Ocean, that was well articulated and I totally agree.

    Illness with money is quite a different experience than illness without money. I did mention that as one example.

    This is a hard one for me so I didn't mean to focus on it. I know a number of people who are completely indigent and abandoned by their families. I myself never had a penny, or even half a penny, of family help and never will. Dreambirdie herself has openly admitted her father helped save her, he believed in her and because he had money gave her the money to build her safe house. Cort has openly admitted his deep gratitude to his family, both his father and brother, for helping him every month through the years, and I vaguely recall his sister opening her home to him to camp on...

    These people don't annoy me because of their deep gratitude for their monetary blessings.

    It's wonderful to be blessed in any regard--with any luck of any sort, whether financial, physical, spiritual, mental, emotional. Keeping in mind how grateful we are for any blessing, and that each of us must try to claim our own path--the whole kit and kaboodle of it, and try to meet it with grace and wisdom, or at least learn grace and wisdom.
     
  9. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,111
    Likes:
    3,364
    N. California
    Beautifully said, JB.

    I am forever grateful for having that ONE family member, my father, who believed me that I was ill, and was willing to help me. Of course, it wasn't all easy and breezy, as it did take him about 13 years to really get it and included a lot of very ugly battles with my mother, who never did believe me and resented my father for helping me. But in the end, in my case, the good guy won. And I will forever count my blessings for that.
     
    jenbooks likes this.
  10. jenbooks

    jenbooks Guest

    Messages:
    1,220
    Likes:
    113
    I'm glad the good guy won, deebee.
     
  11. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    For me, even whether people are grateful or not doesn't concern me. My issue is only with the denial or lack of acknowledgment of how much a difference advantages can make. Suggesting all are the same when it comes to illness ("the great equalizer") is upsetting to me because it's dismissive of the the reality and hardship of some people's experience. It's great for TB that she has the advantages she has but I disagree with her comment that suggests that these things don't make her illness experience very different, and if not quite a lot easier than at least full of more options and opportunities, from that of someone without these benefits.

    (By advantages and benefits I mean monetary, as well as other advantages, including having family and social support, having the ability to still do some kind of work, or even getting sick later in life which would allow for having been able to work longer and possibly saving more money, and many more variables. There are many kinds of advantages, as you noted too Jenbooks.)
     
    Wildcat likes this.
  12. Nielk

    Nielk

    Messages:
    5,273
    Likes:
    5,291
    Queens, NY
    Hi Ocean,

    Thanks for poinring this out. Now that I re-read my post, it sounds really insensitive to the suffering of people who lost their job. I am one of them but, luckily have a husband who still works and supports me. I do realize what a hardship it is for people who have no income left. I do not know hoe I could cope with that. This is on top of being so sick. I am usually very sensitive to this terrible hardship and suffering that results from this. I'm sorry that it sounded like I was trivialising it. It was not my intent. It is "hard core suffering". Thanks for pointing it out to me.

    Nielk
     
  13. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Thanks Neilk.
     
  14. Recovery Soon

    Recovery Soon Senior Member

    Messages:
    380
    Likes:
    37
    Thanks for crystalizing the essence of this book so clearly. Words can be dissected so literally as to debase and strip them of their meaning - in my opinion you comprehended and communicated the message of this book simply and beautifully.

    Thank you.
     
  15. Merry

    Merry Senior Member

    Messages:
    1,357
    Likes:
    607
    Columbus, Ohio, USA
    Happy New Year, all.

    I happened to catch on the radio early this morning, at Krista Tippet's On Being, a broadcast called "Pursuing Happiness, with the Dalai Lama":

    "The XIV Dalai Lama seems to many to embody happiness happiness against the odds, a virtue that is acquired and practiced. Before a live audience in Atlanta, Georgia, we had a rare opportunity to mull over the meaning of happiness in contemporary life with him and three global spiritual leaders: Muslim scholar Seyyed Hossein Nasr, Bishop Katharine Jefferts Schori of the Episcopal Church, and Chief Rabbi Lord Jonathan Sacks of the United Kingdom. For this new year, an invigorating and unpredictable discussion exploring the themes of suffering, beauty, and the nature of the body."

    Much laughter during the discussion. A good start for the new year.

    You can listen to a podcast of "Pursuing Happiness," as well as earlier shows, at the website:

    http://being.publicradio.org/


    My best wishes.
     
  16. anniekim

    anniekim Senior Member

    Messages:
    594
    Likes:
    197
    U.K
    Merry, thanks for sharing that link, it looks really good. Am going to listen. I always enjoy what Rabbi Jonathan Sacks writes in columns in English newspapers...., looks like a good collection of speakers....
     
  17. Merry

    Merry Senior Member

    Messages:
    1,357
    Likes:
    607
    Columbus, Ohio, USA
    Hi, anniekim. Rabbi Jonathan Sacks is an engaging speaker, very funny. I had not heard of him before and intend to find out more about him.
     
  18. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC

    Thanks Merry I'll check it out. Its good to get those endorphins flowing :)
     

See more popular forum discussions.

Share This Page