Turning Straw Into Gold

Life through a Buddhist lens

What Type of Thinker Are You?

“Convergent” and “divergent” thinking represent two different ways of looking at the world. A convergent thinker sees a limited, predetermined number of options. By contrast, a divergent thinker is always looking for more options. Many of us get stuck in convergent thinking and, as a result, don’t see the many possibilities available to us. Read More

Nice post Toni

I will say I am the later of the 2, but I wish my healthy husband were. He's thinking I am either sick or well but I am sick and happy, there is a plan for me whatever that may be. I will not give up and do nothing because of the pain it causes me, I am gonna Live Life to the fullest. I will say the 1st year of being sick I was in bed mostly from exhaustion, pain ect. but know the md's got me under control to where i can say stay out of bed 25% of the day giver or take and that's all i can ask for right now. Definitely Divergent, I will have to give this article to my spouse - I am me! Not a quitter on this beautiful life.

Hi Victoria

Yes, the "you're either sick or your healthy" thinking is not only hard on us when it's us thinking it but is hard when others think it about us. When someone sees me out, they just assume I'm healthy. They have no idea how sick I'm feeling. I'm glad you're not bedbound anymore. I hope your husband reads this piece! All my best, Toni

Thanks and Comments

Ms. Bernhard, thanks so much for your helpful article. I empathize with Victoria - my husband thinks I look fine, therefore, I must not be sick. He is blessed with excellent health; that makes it even harder for him to understand. I have tried reading short excerpts to him, or given him analogies that he can understand, given him simple charts of our symptoms, etc. I just don't know how to get through to him.
I look forward to reading your books!

Hello Joyce

I'm so glad you liked the article. You're not alone (as you saw here) in having difficulty convincing a spouse that you're sick. You might have a look at a couple of my articles. One was written for the holidays but is relevant to your situation -- it's about communicating with loved ones about illness. I'll try to find the link and put it here.

http://www.psychologytoday.com/blog/turning-straw-gold/201212/educating-...

I do think that my book "How to Be Sick" could be helpful. Many people have told me that their partners understood for the first time how they felt after reading the book. You might not just give it to him all at once but pick a chapter or an excerpt and ask him to read it -- those that you think will help him understand how hard it is for you. (My second book isn't released yet…and How to Be Sick focuses more on illness anyway).

Warmest wishes to you and hang in there Joyce.

Toni

Wow.. now THAT'S interesting!

25 years ago a small town doctor called me into his office and asked just about the darndest question I ever heard.
"How would you like to be a prototype for a new syndrome"

I was pretty shocked that Dr Cheney would ask me this, but reflected for a few seconds. "Wow. Now THAT'S interesting. Why.. if I ever met someone who started a syndrome, I'd have LOTS of questions for them."
And agreed to do it.

Here's the weird part. I thought pretty much everyone would see it the way I did, but when people are confused about CFS, and I tell them "I started that syndrome, and can tell you a thing or two about it."
They always reply "No you can't. No one can say they started CFS."

And have no questions at all. They go away angry.
Someone HAD to have started CFS, or we wouldn't HAVE a syndrome by that name.
Why would anyone react that way? Why does it make them so mad that they wouldn't have a single question?

Please tell me. What kind of thinker is that?

These two types of thinking

These two types of thinking look similar to deductive and inductive thinking to me...

did u and cheny really tag the name cfs?

were you chronically fatigued? are you still? did you have other diseases at the same time or later diagnosed with something? curious? really. hum. that would suck you still have cfs then. i am not sure what to call that one. not enough information or lyme brain (who coined that).

Where did "CFS" come from?

Stephen Straus of the NIH came up with the term "Chronic Fatigue Syndrome" CFS was one of a few different names he had been kicking around. Another was "neurathenia". (Notice the small change from "neurasthenia"?)

For a while, Cheney and Peterson thought the Tahoe illness was "Chronic Epstein Barr-Virus Syndrome "CEBV Syndrome".

But as he says in this video, he wasn't aware that EBV could create an epidemic, and started looking around for evidence that this wasn't from EBV at all.
When he called me into his office, he was excited about something, pulled out my lab results and circled it.
"EBV negative"

I was his first concrete piece of evidence that this wasn't CEBV Syndrome. We had to stop calling it that.
Which he does in this video, where he haltingly calls the illness "Chronic Fatigue Syndrome" for the very first time.

That's how the path toward the new syndrome to reflect the change began.

http://www.youtube.com/watch?v=4xdtVan0xko&feature=player_embedded

Book

It is possible to buy this audiobook? It existe? lol

Re: an audiobook

Hello Lucio. An audiobook will be available soon -- I'd guess 2-3 months. If you give me your email address, I'll put you on the list of people who've asked to be notified when it comes out. You can email me at toni@tonibernhard.com with that information (or you can click on the envelop icon at the end of this piece and send me an email that way -- it's a different email address but they both get to me!)

Warmly,
Toni

Once again, such a good and

Once again, such a good and challenging article.

A couple of weeks ago my pulmonologist referred me to an out-patient rehab to improve my lung function. Since muscles throughout my body are damaged (from myositis), it has been discouraging that now my asthma has become much more serious. But it felt good that the doctor thought that the rehab could improve my quality of life so I was happy to try even though it would be a lot of work.

However once I found out more info about the program I knew my daily fatigue would not allow me to do the rehab. This was depressing and I became quite discouraged. Then, doing some divergent thinking - didn't use that term at the time - I asked the doctor to please find a less stressful program that I would be able to do with my damaged muscles. And perhaps later I'll be able to do the original rehab.

Thanks so much Toni for sharing your good thinking with us.

Judy - Excellent!

This is a great example of divergent thinking…even though you didn't know the word. I'm so glad that you did this. Warmest wishes, Toni

Thank you for a timely and

Thank you for a timely and provocative article. Like you, I have CFS, going on ten years, and like you I've made much peace with this path. For the most part, I see that I've shifted toward more divergent thinking, but I know that I'm really stuck in this area: SSA Permanent Disability. I receive and depend on this, so I am fearful that something like enrolling in a correspondence course will put that in jeopardy. Indeed, the label of "permanent disability" may help a university to be more generous in understanding if I have to sit out for weeks or months because of the waxing and waning nature of this illness, yet I understand that owning that label can limit me too. I have heard horror stories about things like someone losing their benefits because of photos posted on Facebook of them smiling and holding up a glass of champagne at a relative's wedding. What might happen in the eyes of SSA at my next review if I could save up the energy to get to a weekend conference, even though it might take a few months to recover from it? I vacillate between thinking that this fear is ungrounded and thinking that it's wise. I'd love your feedback.

I wish I could help more with this

All I can tell you is that I've heard these horror stories too and so your fear is probably not groundless. Maybe you can find someone with more experience with the SSA than I have. I'm not on disability. I took an early retirement because I couldn't face physically what I'd have to have done to go for disability and we were fortunate that, with some budget tightening, we could get by on the retirement. I wish you all the best. Toni

Thank you for your reply,

Thank you for your reply, Toni. I respect you so much; it is validating to hear you say my fears aren't groundless. As in so much with this illness, I think I need to address this area of my life with a two-fold approach: researching and understanding the repercussions with SSA of trying to make and reach a goal and then chosing based on knowledge, and separately trying on divergent thinking about my health and fears. Your article is really timely for me, inspiring me to not just be stuck but to move into and (eventually) through this.

SSA and Disability

I have had ME/CFS for over 20 years. It was manageable until the BIG relapse came in 2011. I was able to retire from my job, although I had planned to work a few more years. I applied for Social Security Disability, thinking I understood what they needed (I did not!). I found a wonderful attorney and together, we were able to get me on disability. I have many other health issues also, and that is what convinced the judge. It is difficult to explain our disease because it is "invisible". Are you wanting to take one college course and attend classes? My fear is SSA would reason that if you can get to the class, sit there and take notes, go home and do homework; well then, you should be able to work. Is it possible to take the course online?
I appreciate your comment about pictures on FB. I rest and rest if a big event is coming up. And everyone takes pictures and posts to FB. I will be extra careful now, thanks.

Hi Joyce - I did not apply

Hi Joyce -

I did not apply for permanent disability for several years because of how difficult the process would be. And it was, but I'm thankful now to be on the other side of it.

I have been looking into a graduate program that is all via correspondence courses. Some universities still offer them this way--via US Post rather than on-line--so that people can access them no matter what their material cricumstances and where in the world they are (such as serving in the military). Í'm looking into it because yes, it is all study at home. Most people who enroll in the program complete 30 credits in two years on top of working full time; I would hope to do so in the maximum five years allowed, but that may be an impossibility. Finishing one class might be imipossible!

After I had been sick for a couople of years I had some improvement and was able to take one actual on-campus class at a near-by university. With CFS, this meant doing nothing aside from the class during those four months, yet by the middle of the semester I was noticably worse and began missing half of the classes the last few weeks. After some months of recovery I did this again a year later, and again a year after that but the last class I could take in that way was in 2008 and I have not been well enough to try since. This worsening was part of my SSA claim (supported mainly by doctor info and letters).

Returning to Toni's theme of divergent thinking, it may be that a program of study at home would lead to some sense of reaching a goal. It may be that I will discover that I'm unable to do it. I know that I have weeks at a time when trying to think makes all of my more physical symptoms so much worse, and it may be impossible to patch together enough progress to finish one class, much less achieve a degree.

I think that I've had a little improvement over the past year because this longing has come back to me, so practicing divergent thinking might be an important shift for me right now. Last week I copied down this quote from Michelangelo: "'The greater danger for most of us lies not in setting our aim too high and falling short; but in setting our aim too low, and achieving our mark.'"

Please, all dear readers with disabling, chronic illness, do not take that quote as an insensitivity. I mean that within my narrow room of life now with this illness, can I find a way to live more fully? How do I become the hero of my story rather than the victim of it? Even with the same illness and limitations?

Divergent Thinker!

I am most certainly a divergent thinker. I am always looking for other options, particularly if they made my life or work easier.

I have found that being a divergent thinker isn't always a good thing though. People resist change. When presented with a "better" or easier way to do a thing, some people get insulted or take it as a personal affront. So, despite knowing how to make a task so much easier, I learned to keep quiet and keep things to myself. Which I always found so sad.

I have never held a job where I felt my personal opinion, experience or creativity was welcomed, let alone valued. That is sad too. A curious mind full of creativity and joy in new things. Squelched to silence.

My own family has accused me of being unable to finish anything. It's true, I admit it. I am a day dreamer. Not so much a "doer". I see options everywhere I go, I crave new things to learn. Inevitably that means getting lead off in another direction. Another tangent of "ooh, that looks interesting..." to the point where I forget what the heck I was supposed to be doing to begin with! Perhaps that is/was part of my illness, who knows?

I am also a person who is always looking for the brighter side of things, no matter how bleak a situation seems to be. Except when it comes to finances. Having lost the ability to work and therefor a very necessary second income, finances tend to go straight down the drain. I'm sure many of you reading this have experienced similar. No matter how I think, our finances aren't about to improve any time soon lol

It's so ironic that I know of so many treatments and opportunities that could help me feel better, maybe well enough to return to work. If I could only afford them. It's really kind of awful in knowing that but being completely powerless to do anything about it.

I found this article, as always, incredibly interesting! I learn new things when I read your stuff Toni. Thank you for feeding my mind and making me think! <3

Hi Shannon

I enjoyed your comment so much -- the difficulties you sometimes face because you're a divergent thinker! Thanks so much and thanks for your kind words. Warmly, Toni

Black and White

This year I gave up (again) the dream of finishing my Graduate Program. In my mind, I either finished and was a success or I quit and I was a failure. I drew a picture that depicts my dilemma. I am in a hole-riddled row boat (my body) that is tied to a dock ( finishing school) with a long rope. I spend all my time alternately rowing with all might away from the dock and bailing water out of my boat to keep from sinking. It is a work in progress.

Rebecca - I know what you're talking about

I've been faced with those dilemmas many times. Even if you can't see other options right now, just keeping in mind that they might be there will help you recognize them when they come along. Thanks so much for your comment. Warmly, Toni

You could write poetry,

You could write poetry, Rebecca! I don't mean to make light of your loss; your prose are just very poetic. Does your graduate program know about your health? Are there provisions under the disabled persons act (don't know the correct name) that might be helpful for you? I need to do that research myself, but it could be that by contacting the administrative office at your school they can refer to you the people whose job it is to help disabled students. I know that's one place I'll start.

You may have done all this and come to your decision with that information, in which case I extend my heart to you for the loss of this goal and dream. We have so many losses with chronic illness. I wish you all the best.

HOW DO PEOPLE WRITE BOOKS

HOW DO PEOPLE WRITE BOOKS WHEN CFS CAUSES BRAIN FOG & SO MANY COGNITIVE DIFFICULTIES? MY CONCENTRATION ABILITIES FOR NEW CONCEPTS & COMPLICATED MATERIAL MAKES IT SO HARD FOR ME TO READ OR LEARN NEW THINGS.I HAVE A HARD ENOUGH TIME FIGURING OUT MY COMPUTER, NEVER MIND UNIVERSITY COURSES! I'D LOVE TO GET SOME WRITING DONE, AS I'VE ALWAYS BEEN GOOD AT PUTTING THOUGHTS ON PAPER. BUT TO FIND THE ENERGY & MOTIVATION TO JUST MAKE NECESSARY PHONE CALLS FOR THINGS THAT REQUIRE ATTENTION IS SO HARD FOR ME. I SUPPOSEDLY SHOULD HAVE ALL THIS TIME ON MY HANDS & I FEEL MYSELF SWAMPED WITH SO MUCH THAT NEEDS TO BE GETTING DONE. I HAVE TO FORCE MY BRAIN TO CONCENTRATE, TO ABSORB, TO RETAIN.

SHANNON, I KNOW WHAT YOU MEAN ABOUT BEING ABLE TO TAKE NEW TREATMENTS! IN THE FIRST 6 YRS I TRIED SO MANY DIFFERENT THINGS; MOSTLY HEALTH PRODUCTS RATHER THAN MEDICINES. NOW I'VE USED UP ANY SAVINGS I DID HAVE & REALLY CAN'T EVEN AFFORD TO PAY FOR THE FEW I BELIEVE DO HELP & AT LEAST KEEP ME FROM BEING TOTALLY BEDRIDDEN AS SOME ARE. MY HUSBAND IS NOT WELL, WE ONLY HAVE OUR SENIOR'S PENSIONS & I FEAR WE WILL LOSE OUR HOME SOON. WE HAVE A LARGE YARD THAT REQUIRES MONEY FOR UPKEEP & TO DO WHAT WE WANT TO DO. WE HAVE PETS WE PRAY DON'T NEED A VET. WE CAN'T GO ANYWHERE FOR SOME ENJOYMENT. MY LIFE REVOVES AROUND THE PEOPLE ON MY COMPUTER, T.V. & IN BOOKS. MY FAMILY ARE GOOD ENOUGH TO COME HERE FOR SPECIAL OCCASSIONS & HELP WITH THE FOOD & PREP. I SELDOM HAVE VISITORS, BUT I DO HAVE A FEW FRIENDS I TALK TO ON THE PHONE.

SO AM I A CONVERGENT OR DIVERGENT THINKER? LATELY, I'M HAVING TROUBLE THINKING AT ALL!! SORRY, JUST GOING THROUGH A DIFFICULT TIME THESE DAYS. ONE DAY AT A TIME. BLESSINGS TO ALL, BONNIE.

Bonnie - Please don't feel bad that you can't write

As I say in "How to Be Sick," CFS isn't one illness. It's 4-5 different illnesses all under that one umbrella term. As a result, people have different symptoms. I feel as if I have the flu all the time,but, except to the extent flu-like symptoms can make thinking difficult, I don't suffer from cognitive impairment the way so many people with a CFS diagnosis do. But, with this flu-like feeling all the time, I'm rarely able to leave the house so my life is severely restricted.

Please have compassion for your dear sweet mind that's been afflicted with this cognitive dysfunction and brain fog. It's something you'll just have to learn to make the best of.

I'm so so sorry to read about the pressures in your life right now. My heart goes out to you. I hope that you don't lose your house. I'll be thinking of you and wishing you the best as you go through this difficult time.

Love to you,
Toni

Thank You

Thank you Anonymous for the encouragment to write. I am so blessed by your words.

Bonnie, I too struggle with the cognitive fog. Simple tasks take forever and I am constantly forgetful. It is sometimes dangerous because I forget that I have something on the stove or get distracted and walk away from it.

As for school, I was diagnosed with CFS about the same time that I began my Grad School program. I slogged my way through 1/2 of the credits in twice the alloted time. At this point, I am just tired of working so hard for so little progress. It is just too hard.

Dear Rebecca-- I know so well

Dear Rebecca--

I know so well what you mean about it taking at least tiwce as long to do even half as much. I'm so sorry though. I find that my written self sounds so much stronger than my in-person self. Dear readers don't know the effort simple email might take.

Our cognitive difficulties can be not just dream-breakers but downright dangerous! After forgetting a kettle on a stove and almost burning down the house (the stove-top was glowing red, and it wasn't one of those stove tops that are supposed to do that!), I got a kettle that whistles. I also began setting up clues for myself like setting a timer to go off so that I don't forget my meds or my cat's, taking something in hand from what I'm in the middle of if I get interrupted because I certainly won't remember what I was just doing (resulting in something like "why am I holding this envelope? Oh that's right....") In the first few years of illness that was all quite frightening, but now it doesn't create emotional turbulence.

I wrote at length in a response to someone else just now about the correspondence study. Maybe there is something there for you. And maybe not. I honor where you are in your path and don't mean to stir up ideas that you may have already made peace with.

PLEASE DOCTOR, NEED HELP.

Hi. Am new here also need help.
Am 27yrs old, a Tanzanian. Am glad to meet you Doctor. My daydream was to become a scientist. But till now do no who am i... I completed secondary education in 2007, I love mathematics and physics very much and have been teaching maths in different secondary schools since 2008..... But am not allowed to teach at that level and my students pass maths.... I dared to teach maths a high student something amazes anyone i teach maths praises me...... So don't really know who am i..... I remember that i scored 'D' in my last exms and am always eager to know different things that are new to me ... please help me....who is genius?, am i sick?

To Mr. Newton

For Mr. Newton: I don't know the answers to your questions, who is genius or whether you're sick. I'm not a doctor, just a person with a blog at Psychology Today. If you need a doctor, I urge you to find someone to help.

All my best to you,
Toni

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Toni Bernhard, J.D., is a former law professor at University of California at Davis. She wrote the award-winning How to Be Sick and, recently, How to Wake Up.

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