Brain Health

Do Therapists Need to be on Twitter?

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Data don’t lie; you can’t hide from data. Mid-August my gamma brainwaves had dropped, my ever-spinning busy brain, heart rate, and muscle tension risen. Then my Pastor helped me make a necessary decision, and all my brainwaves returned to my normal the first week of September. I learnt a hard lesson about social media and therapists.

The situation on Twitter my Pastor extricated me from had been unfolding for months. I had been blind to it because of being a woman who hates confrontation, because my injured brain processed slowly what I was experiencing, because the PTSD hell I am in deafened me to the subtle difference between concern and obsession.

When I began to feel crowded in late August, I spoke to three therapists, a peer mentor, friends, and family about what to do. The situation changed daily and hourly; advice I got was old by the time I returned to Twitter. My inability to make quick decisions, my self-doubt, my slow processing all rendered me unable to handle the situation in real time on my own. I didn’t have weeks for my brain to process sensory input and initiate an action plan. I needed professional help. I didn’t receive it from my not-on-Twitter therapists. If I had told any therapist a man I knew was suddenly knocking on my front door every. single. day with a bunch of roses, then roses and chocolates, then roses, chocolates, and teddy bears several times a day, what do you think they would have said? Probably not “I can’t tell you what to do.” Finally I thought of my Pastor. He is a professional, he knows off behaviour, and he participates in social media. It was the latter that benefitted me. He understood the milieu, the tools to protect people; he knew what I needed to say and what I needed to not do. Mute, block, report, in that order, he repeated to me, if the man keeps getting to me. I wrote down his instructions and acted.

Relief. Then I got angry.

Imagine being a person with a brain injury who discovers Twitter, begins to flourish socially, then is informed by mental health professionals who are not on Twitter how it’s not “real life,” it’s only a start, how they need to get a social life in the “real world.” And to leave if someone is bothering them.

It’s patronizing, unhelpful, uncomprehending of social media, and a nicely worded putdown of your client’s experiential knowledge of Twitter as if it’s not as good as your what-you-heard-through-the-grapevine knowledge.

How can you really know the new and opaque Twitter community if you’ve never lived in it? Would you consider yourself qualified to help a person if you had no experience with commuting, with working, with living with a family, with friendship, with social clubs, with professional groups? That’s the kind of therapist you are when you attempt to aid a patient on Twitter when you’re unfamiliar with it yourself.

Up till now, I’ve thought it would be nice but not necessary to have my therapists on Twitter with me. But I’ve changed my mind. It is necessary for people in the helping professions to be on Twitter, to be experientially familiar with it.

So this blog post is for mental health professionals with no social media life experience.

  1. Social media, specifically Twitter, is real life.

  2. People in the helping professions who are not participating even to a small, regular degree, cannot help their patients or clients when toxic situations arise. They may think they can; their clients may hope they can. But they can’t.

How can you tell when behaviour is tipping from a bit too interested to obsession to stalking when you’re not familiar with what’s normal behaviour on social media?

When would you advise a patient being harassed on Twitter?

You may have heard about the obvious dangers where men tweet vicious rape and death threats to women. But people also become obsessed with a tweep so subtly and cleverly that fellow tweeps won’t recognize the danger. These people can control a person through misusing good Twitter features and can stalk them with no effort. I can see furrowed brows as you guys not on social media think “following” is stalking. It isn’t.

That’s the essential problem isn’t it when your patients or clients are on Twitter or Facebook and you are not: you speak different languages.

It’s like the telephone forty years ago. The instrument of instant voice communication was ubiquitous in Canada but not in England. Every time I visited England, I’d go to call someone and was sharply rebuked. What? What do you mean I can’t just pick up the phone and talk? What do you mean I can only use it if urgent and to use the mail instead? Since when do people use letters to talk to each other?!!! Argh!!! The English relatives would have the opposite experience coming to Canada; they would marvel at this concept of easily talking to people any old time and for as long as they wanted to. How novel! How fast! How freeing!!

That’s social media: novel, fast, freeing; also fun, challenging, stimulating, newsy.

But a therapist not on Twitter is like that relative in England: unknowing and unbelieving.

Twitter has matured into a community separate yet threaded into the world. Today, people of like minds meet each other across space and time; people of opposite minds debate and people from different cultures learn how they argue differently, making us Canadians appreciate how respectful we are; people talk to each other rapidly as if face-to-face, as well as in slow motion over several hours; people congregate around conversations like at the best party ever; people strike up friendships, draw “real-life” relationships closer, and take Twitter ones into geographic space, thereby changing them in unforeseen ways; people live tweet events to an audience who watch through their smartphone apps; journalists smash through the confining walls of traditional media; people influence politicians; and people get a hell of a lot better customer service – it’s amazing what complaining about bad service to one’s 1000+ followers does for your telephone service. Tone, mood, tiredness, hunger, laughter, knowledge, EQ, IQ, sense of humour, interests all come through in tweets. People become intertwined; personal discussions are conducted in public instead of privately through DM. As a result, all sorts of social cohesions and problems crop up that therapists have no clue about, even if explained through the imperfect filter of their patient’s experience. How would you advise your client in trouble on Twitter? Perhaps tell them to take a break from social media, as I was told to?

But that advice blames the victim and reveals your harmful-to-your-client ignorance of safety tools created to allow the victim to stay on happily while sending the offender out the air lock. Can you imagine advising your client to not visit their friends, don’t read the newspaper, don’t talk to politicians, don’t attend events, don’t watch videos, don’t listen to music, don’t share your photos, don’t write? Well, that’s what you’re doing when you suggest quitting Twitter or social media.

What does a patient do when a painful conversation pops up in their stream? Could you advise them and recognize the urgency if their tweeps began arguing with them, muted them, blocked them for no reason they could understand? Arguments are a fact of Twitter life. Not all are bad. Political or news-driven arguments are informative or entertaining and the cool thing is that strangers jump in – but perhaps a person with a brain injury or social phobia would hesitate to participate without your help. Being able to ask you, their therapist, for knowledgeable guidance would not only be nice but moreso necessary for people with poor social skills and/or low EQ, dontchya think?

Relationships on Twitter are real ones. People are people everywhere. They bring their baggage into the Twitter community, even when they intend to hide it. If they tweet regularly they’ll eventually reveal more and more of themselves.

One of my therapists said it’s like texting. Um, no. It’s more like film acting or writing a book in that you have no specific audience in mind. Maybe one day when you’re a little emotional or bored, you tweet out something revelatory. You mayn’t get a reply, so you won’t know it was read. That drops your guard a little. You tweet out something more revelatory. Pretty soon, regular followers and anyone checking out your timeline will develop a pretty good picture of you. But in texting you always have one person firmly in mind – so you’ll remember to keep hiding what you don’t want the other person to know. And no one ever joins in that conversation sans an invitation.

I was also told it’s like a dating site where the person you’re supposed to be exclusive with can see when you’ve logged on and who’ve you corresponded with. Really? I had no idea. But, um, no. Twitter doesn’t reveal lurkers. But Twitter does make monitoring dead easy: turn on notifications on a favourite tweep and voilá, as soon as she tweets, your smartphone or tablet buzzes. It’s a great feature for friends to keep up with each other or a therapist to monitor a fragile client, but it can also be used to obsess over a person. Or control them. Or stalk them. Fun.

Would a therapist not on social media know about that?

No. You wouldn’t. And so you might say soothingly, it’s only a coincidence he tweets you within minutes of you tweeting and he’s suddenly mimicking your tweets, not recognizing the danger to your client.

Would a therapist not on social media know Twitter is like face-to-face communication and how rapidly things evolve or devolve?

No. You wouldn’t. And so you might tell a woman patient with a brain injury worried about a man obsessed with her, that you can’t tell her what to do but can discuss it at the next appointment if it remains unresolved, as if she has weeks to decide, compose, act.

Would a therapist not on social media understand mute, block, report?

No. You wouldn’t. And so you would tell your client to take a break from a big part of her real life instead of advising her on how to use the safety tools in order to stay in her community sans being harassed.

Well, what’s in it for me, asked one health care professional of me, as if being able to advise their patient appropriately was not a good enough reason. Ahem.

Well, okay then: what’s in it for you to live in a community, live in Toronto, be part of Canadian life?

Do you read newspapers? Twitter will provide you broader and more comprehensive news faster than your traditional newspapers, TV, radio, way beyond what you can imagine. Do you like to influence local politics? Twitter will get you direct access to policians, bureaucrats, and journalists. Do you like to chat over coffee? You’ll meet all sorts of people from around the globe to shoot the breeze with. Do you want to expand your professional learning? You’ll get together with patients and fellow professionals in scheduled chats. Do you want to meet like minds and be challenged by new ideas? Do you want to break out of your geographic box and meet your fellow Canuckians, learn about Canada’s North, feast your eyes on the gorgeousness of our country, our planet? Do you want to meet your fellow professionals from the UK, Australia, India, etc. socially as well as professionally? Do you want to participate in your professional conferences more fully? Do you want to watch volcanoes blow complete with visible and audible shock waves? Do you want to participate in or watch events you can’t attend? Do you want to discuss a TV show no one in your family is interested in while you’re viewing it? Do you like to people watch? Well, Twitter does all that and more because it’s a community comprising flesh-and-blood humans connecting through their minds. Rather sci-fi’ish I know. But real.

Twitter is real life. Twitter is where your patients and clients live. That is why you as a therapist must join in. Or if you choose not to, know that you are abandoning your client to the deceivers of the world while you watch from the sidelines benignly.

Health

Distraction Therapy, Twitter’s Great Strength

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Distraction therapy is a time-honoured, doctor-endorsed way to cope with pain of all kinds, chronic illness, lifelong injuries, basically 24/7 health problems that drive you bonkers if you don’t find some way to separate your mind from them even if it’s only doable for a minute.

Judy Taylor, the woman who couldn’t eat and suffered the pain of stomach acid leaking onto her skin for years, excelled at distraction therapy, as I wrote about in Lifeliner, my biography on her and how she made artificial feeding possible for tens of thousands who need it. She took distraction therapy to the humorous and jaw-stopping nth degree by baking cookies she couldn’t eat, cooking pot luck dishes she couldn’t eat for community get-togethers, and taking great glee in feeding people.

Friends would greet her enthusiastically and warmly whenever she showed up at events. Everyone was happy to see Judy. What they wouldn’t do is ask her how she was — they could see it in the way she talked or held herself or what she talked about — for they knew that she was there for the same reason they were: to enjoy the company of other people and to have a good time. They knew she didn’t want to talk about herself endlessly. They knew that if she did need to talk, she would approach them.

Judy compartmentalized her life so that she could cope mentally with living on artificial feeding, never eating, and the acid burn pain on her skin. That meant she only spoke her most personal pain to her nurse, her husband, and her Pastor. Her friends respected that; if she ever shared with them, they listened but respected that most of the time she wouldn’t. And that was OK.

She lived in the time before smartphones and social media. These great inventions provide even more kinds of distraction therapy. My fave is Twitter.

The nice thing about the online world is that it’s as easy to participate in for a disabled person as for “normals.” The ease of tweeting comes not because you’re healthy but in the way you’re wired. I think people who like to talk and chat and write and who see the confines of 140 characters a fun challenge, are the ones who like Twitter best — no matter what their abilities.

Some of us are like Judy. Those of us who know about Twitter have discovered it’s a most excellent way to distract a person. When you hop into the Twitter community, you can get riled up by the latest outrage in any part of the world. And be distracted from your own intense pain. You can laugh over funny cat photos. And be distracted from the serious issues in your life. You can debate politics with fellow Canadians or international fellow Tweeps. And feel normal. And sometimes you can talk about your own personal pain and find fellow sufferers to commiserate with for a little while or sympathetic people who want to learn more or listen to you. But if someone asks you every single day or even weekly how you are, Twitter loses its ability to be distraction therapy. It becomes just another place like everywhere you go in real life reminding you that your life ain’t that easy.

There may be no visual cues on Twitter as to how a person is doing; but there are Twitter cues like kinds of tweets, tone of content, pattern of tweeting, etc. And regular followers can pick up on when a person is going south and ask then: how are you doing? And like Judy’s friends listen carefully, chat a little while for as long as one can and the person wants to, and then interact with them normally, knowing distraction therapy is the best thing one can do for the hurting person.

Brain Power

May’s #ABIchat: Ambition

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Brain injury takes so much from us or from clients and loved ones. On May 5th, I was listening to the radio show Q on CBC Radio 1 when Jian Ghomeshi, the host, mentioned that first-born girls are the most ambitious and likely to succeed. I guffawed. I’m a first-born girl, and I was ambitious; but back when I was in my 30s, brain injury “retired” me from society and normal ideas of success. Then I sobered up because I realized that for over a decade I hadn’t felt the kind of ambition Ghomeshi was talking about. Being a first-born girl, I know what that kind of ambition feels like. It’s eager, curious, engaged, energetic, future thinking, and present planning. What happened to it?

Is the drive to recover from brain injury, ambition? I asked myself. No, it’s desperation; it’s self-preservation. But it’s not the kind of ambition Ghomeshi mentioned. Is ambition included in brain injury recovery? I thought about how getting back into society like a normal functioning person is not only barred from us by our injury but also by the fractured and inaccessible treatment, and thus how ambition vanishes from our lives too. And so thinking about all these things, I’m inspired to make May’s #ABIchat topic on ambition. Come and join us on Twitter on Monday, May 12th!

Brain Power

Brain Injury Friendly Way to Socialize: My Article in March 2014 OBIA Review

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My Article in OBIA Review!

Because of my Twitter activities and launching #ABIchat last year, the Communications and Program Assistant at OBIA, the Ontario Brain Injury Association, contacted me about writing an article on social media for their magazine OBIA Review. It’s rather nice to be invited out of the blue to write something, and so I did. Back in January. Just in time for their deadline. And then I promptly forgot all about it.

Forgetting isn’t always a good thing. But in this case  . . . 

Imagine my delighted surprise when the March 2014 issue (PDF) on social media came in my mail, and I opened it up. Actually, I opened it up after someone tweeted out their kudos, and I had to go look what they were talking about. Oh dear, brain injury strikes again. But wow — so cool to see my byline!

Brain Health

The Unconscious Mind in an Injured Brain

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TVO devoted a week of primetime programming to Mysteries of the Mind. And The Agenda, hosted by Steve Paikin, featured a different brain-focused topic each evening as introduced by Dr. Norman Doidge, a psychiatrist and psychoanalyst in Toronto and author of The Brain That Changes Itself. One of TVO’s multi-part documentaries was on the unconscious mind, and The Agenda featured a panel discussion on that topic on Tuesday, 21 January 2014. The premise of the documentary was that we are entirely controlled by the unconscious mind. The panellists on The Agenda took a more nuanced view, but someone said somewhere that with each advance in scanning technology and research into the unconscious and conscious minds, we are seeing that more and more of our brains are about activity in the unconscious mind.

Some of the points they made puzzled me because as a person with a brain injury they didn’t quite fit. One point in particular bothered me: the experts stated that the unconscious mind makes decisions for us, that although we may feel that our consciousness does, the decisions are in fact made before we become aware of them, that the only way the conscious mind influences decisionmaking is if we challenge our decision consciously and in a different environment.

The experts also said that the cerebral cortex, the seat of conscious awareness, consumes as much energy as all our muscles whereas the unconscious mind consumes little energy. In addition, the conscious brain processes slower than the unconscious. Thus if we used our conscious mind solely and for everything we do, like brush our teeth, make decisions, play basketball, walk, find a mate, we would be slow and make mistakes. Sound familiar?

I have had my evoke potentials tested, and we have seen that my neurons fire quicker than average. Thus my unconscious mind should be working at normal or faster speed.

Take all that together, and I think . . . hmmm.

As a person with a brain injury, I cannot make decisions. With the help of various people and through trial and error, I have come up with strategies to make decisions. For example, these days, I buy only two apples at the grocery store. I don’t think about it; I just find two. If I had to decide on how many to buy each week, depending on what was in my fridge, what I felt like eating, and so on, I’d stand there for at least five minutes . . . maybe ten . . . maybe give up . . . before I chose my apples. Grocery shopping could take awhile. With major decisions like whether or not to buy an iPad, I use a decision tool or a couple of them. I have to think consciously about each step and each question in that tool, although filling in some of the answers may involve my unconscious mind.

My experience is not an isolated one. It seems that somehow brain injury makes the unconscious mind stop driving the conscious mind, and forces us to rely heavily or solely on the conscious mind. Until recently, I had to even think about walking. It didn’t feel like I was thinking with my conscious mind about how to move my legs until I no longer had to, because I’d become so used to it.

If the theories about the unconscious mind are true, then it seems that either the unconscious mind no longer talks to the conscious mind or the conscious mind no longer listens or the unconscious mind isn’t the driver of those of us with brain injury so much as it’s the seat of all learned behaviour and with brain injury we need to learn all over again. How much we have to re-learn depends on the extent of the injury and the kinds of and which memories remain intact. Perhaps too, although long-term memories may remain intact, our connections to them are damaged, and so they drive us in ways we are not aware of and force us to make an effort to understand. Sometimes they may drive us insane, as in PTSD. As one of the panellists stated, this part of the unconscious mind can be tapped through hypnosis and either given back to us or changed so that they are no longer “in charge.” Is that true for people with damaged brains too?

Watch The Agenda episode below on Unlocking the Unconscious and answer this: how do you think your unconscious mind works in you? Do you think you’re still connected to it? Do you think your conscious mind has to do all the work, if you have a brain injury? What are some ways we could tap into our unconscious mind? We’ll discuss these questions on #ABIchat on 27 January 2014 at 4:00 pm EST.

Brain Biofeedback

Pills are Not the Only Modality of Treating the Brain

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I’ve been thinking a lot lately about how the medical system treats the “mental illness” aspect of brain injury, that is, moods, thinking styles, that sort of thing. I’ve never been put on drugs for depression or concentration problems, but I know others who have, and my neurodoc has talked to me several times about it (which annoys the heck out of me). Back in 2005, I began looking in earnest at other “mental” issues as a way to figure out how to heal my brain injury. And so I looked at ADD to see how to treat my attention problems; I knew about depression from my studies and thought about the various ways it’s treated and is different from brain injury affect to see how to get my affect back (absent or flat affect is not the same as depression but close enough to be instructive); and I opened my mind to learning more about other mental illnesses and how I may apply their lessons to my own issues.

What I learnt:

Medication is the main modality used to treat mental illness: Ritalin, Prozac, Abilify, Clozaril, etc.

Retraining brainwaves is my main modality: beta brainwaves, high alpha, gamma, etc.

More and more, I hear patients being concerned about medications or medicine in pill form, how they are used, and how they are abused by physicians as a way to not see patients regularly. A person I follow tweeted this video by Jonny Benjamin:

Although I disagree with his idea that the pharmaceutical industry is using drugs to numb the masses*, he is bang on in the rest of the video. Side effects or negative effects are a huge issue for most kinds of medications, psychoactive or not, yet too many physicians dismiss these concerns – to their patients’ peril. (Some don’t.) Patients suffering from negative effects will either doctor shop to go off the drugs or stop them on their own; or they will stay on, and gradually the negative effects will become worse than the mental illness. I chronicled my own decision to get off atenolol, without telling my doctor, because of the increasing number of problems that had made my life hellish. We don’t tell our doctors because we know doctors will not listen to us and will argue with us until we feel defeated. We feel we have no choice but to do it on our own.

This got me to thinking about the idea that we can only treat the brain via a neurochemical modality. Physicians have gotten into a rut of thinking that the only way to treat the brain is via chemicals that affect neurotransmitters or other chemical interactions in the brain. The pill is the modality; the ingredients in the pill are the specific action of treatment.

The pill modality leads to both beneficial and negative effects because it’s like a blunderbuss. The chemicals go everywhere in the brain and the body, not just in the injured or malfunctioning area of the brain.

But the brain – our entire body actually – is also an electrical organ. The brain produces brainwaves. While neurotransmitters work locally in the synapses between neurons, brainwaves are generated along the axons of single neurons or as synchronized activity among many neurons. They are still not fully understood, but then neither are neurotransmitters and physicians and pharmaceutical companies have no problem blindly playing with those. Brainwaves can be associated with particular neurotransmitters; hence, my experimentation with gamma enhancement brain biofeedback. In other words, one can potentially increase a desired neurotransmitter, not through direct chemical interaction, but through enhancing a particular brainwave in a particular region of the brain.

In this way of treating, brain biofeedback is the modality; the targetted brainwaves and electrode placements are the specific action of treatment.

There is also an additional modality: direct stimulation of the brain via tDCS (transcranial direct current stimulation). The specific action of treatment is the time, current, and location on the scalp.

The brain biofeedback and tDCS modalities have pretty much only beneficial effects (dizziness and an itchy scalp the only brief negative effects AFAIK) because they’re like darts. The only parts of the brain targetted lie directly beneath the tiny electrodes or tDCS sponge.

I have observed the relative merits of these two modalities in my life. I have met people with brain injury who were functioning at a much higher level than me and did so for years. But they were being treated via the pill modality. After I re-started brain biofeedback for gamma enhancement, I flew past them and am now functioning better than they are. This is not fair, that I have been able to do this and that they are not aware of the biofeedback modality or do not have access to it.

We need to challenge our physicians, to kick them out of their rigid mindset that the only action of treatment is chemical or heavy duty electrical like ECT or surgical, so that we can advance the healing of mental illness and brain injury and improve the quality and functionality of our lives.

———————–

*It may look like numbing the masses, but I believe it’s more about a rigid mindset that cannot conceive of other ways of treating the human body and doesn’t like being made uncomfortable through being forced to think differently. And for the industries involved, there’s a profit motivation to also turn healthy variability in the human condition into diseases needing pills.

Brain Power

Announcing the Launch of #ABIchat on Twitter

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One of the great things about Twitter is the way it fosters conversations, the way people support each other. One of the things the brain injury community is lacking is a place to chat regularly on Twitter. And so I am launching a regular Twitter chat I’ve given the moniker “#ABIchat.”

After seeing other medical communities holding supportive chats, I’d been thinking about getting a brain injury chat going for several months, but it took a conversation with @HammondsHead to kick my butt into gear. And then @BrainworksRehab was so enthusiastic, I knew it was the right time to do it.

I want #ABIchat to be an inclusive community. Those of us with brain injury too often sit outside society, and sometimes we feel isolated even from the people who care for us, whether health care and rehab professionals, caregiving folk, family, or friends. And so I want #ABIchat to be a place where we build bonds between us as individuals and us as members of different groups, where we learn about each other, where we support each other, and where we learn more about brain injury and how to heal it and us. Lofty goals, I know! But you can’t get places without lofty sometimes!

I called it #ABIchat because it is about more than traumatic brain injury; it is for any kind of acquired brain injury, from traumatic to concussion to stroke to anoxia to aneurysm and all in between.

After much hemming and hawing in true brain-injury style, I will launch the inaugural one-hour #ABIchat on Twitter on Monday, August 26, 2013 at 4:00 PM ET (Toronto time). For people in the UK, that will be 9:00 PM; for people on the west coast, that will be 1:00 PM. I hope you will join us! And please spread the word. More details will follow as I set up a web page.

Update 17 Aug 2013: Web Page is set up for #ABIchat and live in the header bar above.

Books

Time and Space Goes on a Virtual Book Tour

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New novel, new book tour! I launched Time and Space on 4 June 2013 and sent it off on an Orangeberry book tour at the same time. Today ends the first leg of the book tour, which comprised reviews (to come), guest posts, author interviews, and a #TwitterView!

Day One: Newbie Blast and a Feature on Peace From Pieces.

Day Two: Interview on Mommy Adventures with Ravina.

Day Three: Guest post on How to Research Your Story on Bunny’s Review.

Day Four: More questions for moi on The Reading Cat.

Day Five: Guest post on Finding Your Voice on Blog-A-Licious Authors.

Day Six: Excerpt on Author’s Friend (tis labelled an interview but it’s a sample of the ebook).

Day Seven: #TwitterView!

(If widget showing only questions, click on this link.)


Day Eight: Twitter Blast with @OBBookTours

The next leg of Time and Space‘s Orangeberry Book Tour begins on June 18 with a guest post and will consist of weekly blog stops, with interviews, excerpts, and features!

Buy Now @ Amazon & Smashwords & Kobo

Books

Home Stretch Stops on Orangeberry Book Tours

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We’re entering the home stretch of the the Orangeberry Book Tour for She and going from daily to weekly stops for Concussion Is Brain Injury. Since my last post, the She book tour has stopped at

She deserves someone to love her unconditionally.” (From My Love for Books Review)

And the Concussion Is Brain Injury tour has been appeared on Twitter a few times, including a #TwitterView, and at these blogs:

Each blog has posted an interview with me, a Book Feature, and/or a book review. Click on the links to see more, including giveaways for a $50 Amazon gift card during March (not all have the giveaway).

What is your favourite quality about yourself?Click to find out my answer to this and other questions!