Whether YOU are a person who has gone from a functional 'wellness' state to a functional 'illness' state and it's lasting long enought to be 'chronic', or you know of someone who has, today's "Reflections on "How to Be Sick" at Psychology Today (dot com) is something I highly recommend your reading. Toni Bernhard authored one of the best books out there about chronic illness and writes about her experience recently when the book was finally being made into an audio book. For those who have had chronic fatigue, you'll understand how it's sometimes too difficult to read (eye muscles are small, they fatigue easily and the brain can have inflammation and toxins it's dealing with and not be thinking /processing correctly.) So it is GRATE news that How to Be Sick will be available in both readable and listenable options.
To hear an author talk about what it is like to revisit their own life by going over their own book in detail is very moving. I am preparing for a class reunion and am the somewhat informal 'organizer', so I got out my childhood and adolescent box of stuff I've toted around with me for about 35 years now, and that included my diaries from my teen years, which were four decades ago now! Many things I hadn't thought about or 'remembered' for 'ever', and so much painful stuff going on. I'm likely not much different than 'every' person out there in terms of the tween and teen years being challenging as we go from being children to adults taking care of ourselves and then others. I think there is value for all people to journal, and one of the benefits of that process is you have the history of your process to reflect back on, just as Toni tells us about in her current piece at Psychology Today.
So, without further setup and elaboration, I give you the link and suggest you go and read with the photos (nice one of her and her husband outside at the coffee shop she refers to), and know about the amazing Psychology Today website resource. I also provide the less polished copied and 'quoted' version below for those who want to see what I'm talking about and aren't yet convinced to take the journey with the link provided. Below it, I give more of my thoughts after having read this piece, as an update from me about Lumigrate and me. We have some things in common, Toni and me. One is that we're activists figuring out how to do our work and we keep changing as our wellness changes. And we're people, balancing things every day and 'be-ing' in the present. So to keep you present with us, the update is at the bottom of this topic. I encourage at the least, reading what I've set up here from Toni, former law professor turned educator and activist about how to be sick.
www.psychologytoday.com/blog/turning-straw-gold/201305/reflections-how-be-sick
Reflections on “How to Be Sick”
What I learned about chronic illness from having my own book read to me.
A few months ago, I had an eerie but rich experience: I listened to my own book being read to me. It took 2 1/2 years, but
finally, I was able to make
How to Be Sick available as an audio download. I chose Deon Vozov as the narrator because she reads the book the way I’d read it had I the skill to do so. As Deon recorded each chapter, she sent it to me in an audio file. I would simultaneously listen and read along in the book. I noted any corrections and sent them to Deon in an email. When I’d get the corrections back from her in an audio file, I’d listen and read along again.
I’ve opened the book many times since it was published, but I’d never read it cover-to-cover (let alone read it while listening to it at the same time!). It was an intense experience, not without tears. I’m sharing what I learned because I hope it will be valuable, not just to those who’ve read the book, but to others who might recognize experiences we share as members of the community of the chronically ill.
1. I’d forgotten how scared and traumatized I was the first few years of the illness. I was afraid I was ruining my family’s life. I was afraid that all my friends would abandon me. I was afraid I’d lose my
career . I was afraid that people wouldn’t believe how sick I was. I was afraid that no doctor wanted to treat me. At times, I was afraid I might be dying.
As I listened to Deon read, I realized that many of the practices I wrote about in the book would have helped me through those terrible early years had I only thought to try them. For example, the
fear and the
trauma would have been eased had I treated myself kindly and with compassion rather than blaming myself for getting sick. In addition, had I been more attuned to the truth of impermanence (what I call Weather Practice in the book), I wouldn’t have been afraid that the worry of the moment was about to become a permanent part of how I’d feel from then on. And I could have benefitted from
mindfulness practices that help keep the mind from wandering off into stressful stories about the past and the future.
As for those many things I was afraid of when I first became chronically ill, some of them indeed came to pass. I did lose my career and I lost many of my friends. But I survived…and even thrived, thanks to a few people in my life, thanks to the loving support I get on the internet, and thanks to the Buddha’s guidance. (Side note: The Buddha was a human being, like you and me. I don’t “practice”
Buddhism as a religion. I “practice” the many tools he left us—as one human being to another—to help alleviate suffering and to help us find peace and well-being in this life.)
2. I didn’t realize how many times I wrote about crying—even sobbing. No wonder people write to me, saying that they wept at certain passages. I wept too as I listened to some of those passages—like the place in the book where I reprinted a letter I wrote to four friends who have since dropped out of my life. In the letter, I tried to explain my illness to them and how, even though I didn’t look sick, I no longer could do many of the things we used to enjoy together. As I listened to Deon read, I didn’t weep out of sadness over the loss of those friends. I’ve accepted that. No, I wept for the Toni I was when I wrote that letter—a person who was desperate and panicked that she wouldn’t be able to hold on to her friends, and a person who thought it was her fault that her life had taken such an unexpected and radical turn.
3. I’d forgotten that the book was so personal. I couldn’t believe that I wrote about peeing into a thermos in my office because I was too sick to make the trek to the bathroon at work! As I listened to Deon read what I shared about my life—particularly how unkind I could be to myself at times—I understood why people tell me that reading
How to Be Sick is like reading about their own lives. The book can get “down and dirty” about life with
chronic pain and illness…and it’s not always pretty.
4. I gained a new appreciation for the ever-presence of impermanence in our lives. I wrote about new friends I’d made since becoming sick, but some of those friendships have already changed—a few have even faded away. Yet, new ones have formed. And I described how I got to know other people who are chronically ill by leaving comments on their blogs (I didn’t have one myself at the time). There’s only one brief mention of
Facebook , but in my life at the moment, along with this blog, Facebook is the principal way I connect with people who live day-to-day with chronic pain and illness.
On the plus side (I like to say that the law of impermanence can be our friend), I realized as I listened and read along, that my health has improved somewhat since the book was published. I still have those “lucky-to-even-be-able-to-post-on-Facebook” days and, come evening— like clockwork—I’m still in the “stun gun” state I wrote about in the book. But I’m rarely entirely bedbound.
I spend more time in the living room and I can visit for longer when someone comes over. My husband Tony and I sometimes go to an espresso place in the afternoon or even to an early dinner. It’s small stuff but it’s definitely a welcome change in our lives. Tony no longer has to shoulder the entire burden of hosting people when they come over, and he sometimes has company when he goes out into the world (so long as he stays in Davis!).
5. Finally, I realized how much I wrote about in the book is still true for me today. This is because, well, chronic means chronic. In the last chapter, I wrote:
Some days I cry out: “I don’t care if this is the Way Things Are. I don’t want to be sick!”
I still sometimes fight the Way Things Are and cry out “I don’t want to be sick.” At least when this happens, there’s a certain book I can look to for help.
If you go to the link to find this piece at Psychology Today, which I encourage you to do, you will find ways to email this piece to others, subscribe to Toni's blog (see the choices below her picture at the piece at Psychology Today). She's active on
Facebook ,
Pinterest , and (to a lesser extent)
Twitter . Clearly, from this article/entry you see she has a preference for Facebook. Facebook has been an incredible 'surprise' tool in the years since I originally 'planned' to create what ended up being called "Lumigrate".
Toni is one of the incredible blessings that came from the connectivity for me and the website's administration and creation of content. (However, limiting the amount of time due to what lightwaves from the monitors are which is not what our brains and eyeballs 'know what to do with' too much, and because EMFs are an increasing toxin that surround us and drain us because they're something our bodies are 'dealing with' that are not natural' for us.)
I encourage people to connect with proactive, positive, 'healed' people on Facebook. Our first year on the Internet, when it got to be the International Fibromyalgia Awareness Day, the first one that was 'on Facebook', tons of people found out about Lumigrate.com. At the time there weren't a lot of websites and blogs out there with the kind of focus we have, so many people registered as users and wrote on a topic thread I started that day about 'your story about your fibromyalgia'.
The reason for it was, just as Toni talks about in this piece, above: People were going over and over their stories with each other. Through my laptop, at the office at that time in a commercial building, I could literally 'feel' the stirring up in people of the toxins that come from going back and looking at the past.
My intention was to get a batch of people who wanted to engage simultaneously, using the connection daily of Facebook with links to information on Lumigrate that I'd create, to walk forward to wellness together. By having a place to tell their stories and then everyone could simply say "you can read my story at this link, I'm SoAndSo screenname (if they didn't use their real name), they could then not stay 'stuck' in the past.
We had two psychologists working with me on content for Lumigrate at the time, one a pain management specialist (Dr. Christopher Young), the other a guided imagery and Heart Math specialist, which has to do with the client seeing incongruence in the mind/body and being able to connect back to having congruence (Dr. Paula King).
As Toni discusses she's grown and evolved by creating her book and writing the column for Psychology Today, and being out there, active on Facebook and other social media, I've had the same experience. I've learned that Lumigrate is 'organic', moreso because the concept is that of having various content providers who I am selecting along the way 'grace the pages' that a person sees on the computer or smartphone screen.
There was a translation factor that was 'unknown' in our planning stages, as we had a very successful 'live' group called the Fibromyalgia Forum here in Grand Junction, Colorado, co-founded and co-lead by Dr Young and myself/me/I. Could we do the same thing with people all over the United State (and beyond)? Initially it looked like we could, but then what I sensed was that everyone wanted to be a leader of 'their own thing' and they struck off to start their own blogs or Facebook groups and 'boards'/pages, etc. I felt a 'dilution' with many, many groups on Facebook to try to keep up with who was writing what and you'd try to converse 'around the campfires' with them.
Essentially, what I envisioned Lumigrate to be, since it was a website with a lot more 'power' to it with it's functionality, was that it would be the 'main campfire' where people would still come periodically and create a new topic or comment on other users/experts topics. As time went on and our content continued to grow, mostly with what I was creating because quite simply it was like herding cats to get a lot of people's time and energy focused upon what little ol' Lumigrate was doing in the big picture of all their tasks on their plate that day/week. And our read / 'hit' numbers continued to grow but people weren't coming to write anymore, they were coming to READ. The people who were, in the past, writing, were off writing at their own sites and their own Facebook pages and learning Twitter and then having to Tweet and Facebook AND do their Pinterest pages.
Lumigrate doesn't have readership like Psychology Today, so providers who are 'hungrier', who are about to launch a new book or a new clinic or a new blog are inclined to want to participate. And they still 'want to' participate at Lumigrate, I do believe their sincerity about that. But the reality is, as Toni points out in this piece, everyone is limited by energy and time. So Lumigrate has had to continue shifting and finding providers who are the 'right fit'. Hopefully for ALL who have been part of Lumigrate by writing one comment or many new topics, it has been a beneficial experience that takes you a step or a leap further in where YOU are going as a person on Earth, doing what it is you're doing and experiencing and growing from.
In 2012 we lost a few providers of content, both from our professional 'fleet' and the laypeople with chronic illness who were gifted writers that I'd seen writing comments on Facebook at the start and invited to participate being somewhat 'featured' at Lumigrate.com's forums. Which is fine -- people get sick, they die, they have gotten to a different place in life and don't want to be working within an established entity with someone over them holding the command of what is being added and what is not. And I was among them, going through changes.
What Toni refers to, above, related to mindfulness and spending time in looking at the stresses of the past or future were a side-effect for me of Lumigrate. Since I'd had to step up to the plate and create more content than I'd planned on, as I wasn't able to get the time/energy attention of experts to create the topics originally and I switched to setting up more things and using published, valid and sometimes progressive sources with links for people to follow out to and continue studying from, it took a toll on my wellness level. Time marches on and aging is natural, I'm fine with that, but the change in my appearance in the years since I started Lumigrate to today clearly indicate it had more effect than just 'time'.
Way too many hours on the computer to connect with people and make connections, form professional bonds enough to decide if someone would be a good fit and be interested in being one of our 'house' experts was very time consuming and took me away from other things. And I also realized that there are inherent complexities in working with advising or facilitating the writing efforts of people with chronic illness that are very challenging. I love doing it, I believe I'm good at it, but the Internet and the times people are around to work with you took me to a very strange daily routine which was, overall, gradually causing my health to slide a bit.
And that simply means that I have to make course corrections and adjustments, and so I've been slowing down the new content and provider development onto Lumigrate this spring. I worked 'feverishly' for a few months after the Newtown shooting situation to get more information about mental health, diet, overall well-being that affects the brain and mind. I recently, in the last week, worked feverishly again to add something timely about vaccine injury, as Petie the OT's former step-daughter's daughter is featured in a vaccine 'action' website.
And I have two pro-bono clients, one's a rather informal case I'm helping advise on for someone who has just in the last months crashed to chronic illness, practically bedridden some days, possible vaccine injury involved which means if a person does have a case to submit for being awarded some of the funds set up by in the US for those injured, the proper medical process needs to be gone through and doctors often don't have the clinical skills with presenting patients to test and document, etc., meaning the patient, the YOU!, has to become educated about a lot of things at a time they're not well and moving at about the pace that Toni just described in this piece.
So there are many reasons I grabbed this one, as I sometimes do with Toni's pieces, and sprinkle them around the various areas of Lumigrate's forums in order to hope that EVERYONE with chronic illness finding Lumigrate finds Toni and her grand work at Psychology Today. And they are just the best source for a lot of diverse and high quality content, I read their paper magazine every month when it arrived in the mail, a yearly Christmas gift subscription from my father's cousin, a professional woman who was the first woman department head at a major Chicago area University who we rarely saw in her career-building days, but thankfully enjoyed in retirement more and until the week she died; she'd called me on my birthday and the next day had the medical event and was not conscious again until she passed at the end of the week once life support was turned off.
Everyone has their challenges. Many of us share the type of challenges that Toni writes about in a way that nobody else can. Every word she has written here resonates for me, the people who write about the tears that come when they hear or read her words and the responses she gets on her Facebook from people/fans who follow her work are astounding in their depth of acceptance and understanding of the process we are all sharing if we are among the growing numbers of people with chronic illness such as chronic fatigue (CFS/ME).
For every person who comes into the process of going from functionally well to functionally ill and compromised, such as Toni writes about here, there are the family and the friends and the coworkers, including superiors who can benefit from being 'turned on', or directed, to Toni's Turning Straw into Gold at Psychology Today and certainly to her book. Having the audio book will be a great benefit and I hope it will be supplied in a way that a person can 'gift' a copy to someone and say 'please listen to this', if it's a person who would be more inclined to listen in the car or while working out or doing work around the home or office.
I often suggest to people to INVEST IN BOOKS and loan them to people who you want to help educate. That might mean saying to a physician or their assistant "This is a book I think makes sense, I wonder if SoAndSo would look at it and perhaps help me in this direction, can I come back and get it in a week?" Or it might mean circulating a copy of Toni's book among those surrounding a person who has chronic illness. Perhaps you know of a chronically ill person who is mired right now in all the emotions and details that come with going from functionally well to ill and you can support them by purchasing a copy as a gift, and plant the seed that they might then provide it to their potential support system in order for them to get a better understanding of what the person is going through.
Or send this link off if you think that what I've had to say in setting up this topic about Toni and the book, and most importantly this current, new article at Psychology Today will be a helpful step for them along their path to health and well-being. ~~ Gratefully ~~ Mardy
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Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as:
Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
