Tag: Health care

Brain Power

Health Takes A Month

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I’m being a dutiful and safe adult and getting my shots. I’ve had my pneumonia one, Prevnar 13, and the two Shingrix ones, for shingles. Next up is my tetanus booster, and I’m seriously wondering: do I hafta‽ I will get it, but I need a few weeks of my health back first.

Brain injury and drugs don’t mix well. Medications don’t work like they’re supposed to when the neurons are damaged. Makes sense, actually. How can broken neurons respond normally to medication changing brain chemistry? Well, the same seems to hold true for vaccines in my single-subject study of one — me.

I’d anticipated I’d be tired and would take a month to get back my energy. And I am getting better more and more each day after the Shingrix booster (which was in the last week of March). But I didn’t anticipate all the effing side effects. Thinking back on it, those, too, make sense because we know brain injury causes an inflammatory immune response, which I touched on in my book Concussion Is Brain Injury: Treating the Neurons and Me. The Shingrix vaccine is very effective because it causes a strong immune response. As a result, I suffered a regression in my strength, my emotional regulation, my stamina, my thermoregulation, my cognitive functioning (reading, memory, problem solving all went downhill and are returning now), and my writing disappeared for a month. Made it kind of hard to blog or even get on Twitter when the latter made me so dizzy, I wanted to barf.

I very much needed homecare, just like I did after eye surgery. But physicians remain so uninformed about brain injury that they assume that something that doesn’t necessitate homecare in the usual patient shouldn’t in one with brain injury. Not true.

I’m coming out the other side. And this awful month has made me fear getting another vaccine. But the threat of shingles in the eyes is worse. Tetanus with what it does to you is more terrifying. And I’ve had pneumonia enough times to choose month-long Prevnar 13 effects of fatigue and emotional dysregulation over pneumonia’s life-threatening gift of days and days of it being hard to breathe to point of scary and then a month to recover and function again.

Brain Power

Week One Lindamood-Bell Reading Comprehension Progress Report

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Visualizing and Verbalizing progress report for week one with Lindamood-Bell All of a sudden, my first week at Lindamood-Bell Australia was done! Never so happy as to hear “we’ll stop there” as time was up in my second hour Thursday night. Yet vying with the fatigue was this alertness, this up state that my neurodoc described as excitement, excitement at starting something new and at the possibility that finally at last my reading will return. It’s a strange feeling, two opposite states co-existing in one brain.

The fatigue comes from pushing damaged circuits in my brain to work. The excitement and alertness arise from the circuits I’ve felt being healed the last year or so through brain biofeedback at the ADD Centre, particularly after we began to inhibit 16-20 Hz at the PZ location.

And now I have a new thing to report progress on!

One thing to note here: the instructors (clinicians) and consultants work as a team. It reminds me of the Toronto Rehabilitation Institute where all the health professionals I worked with kept each other informed of my performance, their observations of me, and any issues that came up.

My Lindamood-Bell Double Bay, Australia consultant emailed me my first progress report (see image). I flew through steps one to three, which I blogged on on day one.

Sentence by Sentence Imaging is either the instructor or me reading one sentence from a one-paragraph story and then me describing the picture I see. The instructor will sometimes ask me questions about that picture, details like describe the man or what do the chicks in the box look like or how many people are on the field. When I have a stable picture in my head that through my description creates an image in the instructor’s head, we move on to the next sentence. At the end of the paragraph, I retell each picture I saw for each sentence in sequence. Only once or twice toward the end of the week, did I get details out of order or forgot something. Once I’ve given the “picture summary” for each sentence, I give a word summary based on my pictures — not the same as recalling the actual words in the story, something I can do easily in the short term. Then I give the main idea. A short sentence with three points, leaving out extraneous details but keeping in a key detail(s). Discerning what’s extraneous and what’s key is not always easy! I can get a bit verbose.

Sentence by Sentence Imaging with Higher Order Thinking introduces questions after I give the main idea. These HOT questions are designed to get me to reach conclusions, inferences, make predictions, think about the abstract aspects of what I’ve read.

Multiple Sentence Imaging with Higher Order Thinking is the same as Sentence by Sentence, except instead of reading one sentence at a time, I or they read two sentences at a time. Sometimes the reading finishes with one sentence to reach the end of the story.

The first stories I read in the first three days had concrete things and few details to picture. On Day Four, my consultant interrupted the first hour to have me read one paragraph because the team had noted I was doing well. I read the paragraph, as opposed to her reading it to me, because I find reading harder than them reading to me. So of course I had to do it the most difficult way! She wanted me to recall it using my natural method, ie, recalling the words themselves. I zipped through my recall. No problem-o. Summarized every part of the story. Then she began asking me questions about the images I created. Well, um, not too many. At first, I was able to easily answer, like when I described the restaurant patron. Then it became apparent that other elements, like the chef, I hadn’t created images for or partial ones, like a closeup of a couple of fries, not the plate or bowl or whatever they were of fries. When she asked me for a word summary based on my images, the summary didn’t reflect the story. She noted that the wealth of my background knowledge props up my reading, but I need to generate images from the story, be able to shift the images as I learn more as the story unfolds, and remember the images and story based on those images over time. I need to also not be so hard on myself. They don’t expect me to achieve 100 percent on the first take! Yeah, I know. Others have told me same. I have eased up on myself over the years . . . maybe.

Based on her quick assessment of my paragraph reading, she had the instructors increase the story difficulty by one level. And if there were three sentences left at the end of a Multiple Sentence story, I’d read all three instead of two and then one. And on day five, during the second hour, I was asked to choose the colour of the first square of felt used. Each square is a different colour, and they’re placed in my view prior to reading a sentence or multiple sentences to represent that sentence(s). I’m not sure of the significance of me choosing the colour of the first square (they chose them for the subsequent sentences), but it does introduce a node of decision making, not exactly my forte.

So to sum up the first week: I did steps one to three automatically and easily. Steps four, five, and six were the focus of the first week, and I reached proficiency up to level five and partial proficiency at level 6.

For next week’s goals, I will have push steps added to the core program of Sentence by Sentence and Multiple Sentences. A push step is exactly that — to push my brain. The expectation is that maybe I’ll achieve 40 percent, but the next week, I’ll have gotten up to 70 or so. The push step will be to introduce reading and imaging an entire paragraph at once. My consultant is not yet settled on whether to up the level to 12 for Sentence by Sentence and Multiple Sentences before moving on to Whole Paragraph Imaging with Higher Order Thinking or move to Whole Paragraph first and then up the level. She’s going to try one or the other with me next week. Either way, from Whole Paragraph on, we’ll go up to level >12. Also, it’ll be at least a couple of weeks before they’ll start working on acquiring new vocabulary and more abstract language and week four or five before introducing multiple paragraphs.

My next-step-on-this-brain-injury-journey-related tweets

https://twitter.com/ShireenJ/status/1016133386790952961

https://twitter.com/ShireenJ/status/1017031127440285696

https://twitter.com/ShireenJ/status/1017064967957368838

https://twitter.com/ShireenJ/status/1017106990651363341

 

Health

Concussion Recovery is a Series of What are my Priorities?

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Slide of graphic of man looking into his head. From Healing the Brain conference.

As I come out of the narrow, tortuous pass that is a life focused on treating brain injury and the subsequent PTSD, I’m faced with the big question: what are my priorities?

The first time I said bye to focusing on treating my injured neurons, I hunted for the supports I needed to be functional. That was my priority then.

“T1: To me “treating the whole person” is about discussing how care plans fit into the patient’s life and GOALS vs. the patient figuring that out later in a vacuum. #patientchat”
http://twitter.com/btrfly12/status/956952160234868741

As I begin writing this, I’m also scrolling through Twitter #patientchat; one person tweets that it would be nice if the physician discussed how care fits into the patient’s life and goals.

It would be!

Up until 2013, for me, my life goal was getting back to my life. Oh, I knew I was writing differently, I probably couldn’t return to computer programming, and writing was the only thing I could realistically do with my fatigue and propensity to suddenly not be able to work for long stretches. But somewhere in me, I believed I could return to “normal.” Return to working several hours a day. Return to normal socializing. Return to earning an income. Return to never having to attend another fucking health care appointment.

Then life and PTSD gave me a rude wakeup call. I had to refocus on health care appointments and also religiously treat my injured neurons at home just so that I could get through the day. That went on for years until a confluence of treatments in 2017 finally slayed the chaos in my brain. Ruminations like a hamster in a steroidal wheel slowed then almost faded away.

I resisted then finally acquiesced to the knowledge that my PTSD was not going to be treated in any curative way (some day I’ll write about why people with complex PTSD aren’t getting better and life is a daily struggle to keep functional and nights a nightly hell of tossing sleep). Then this past Christmas, I tired of treating my brain injury too.

I quit.

Yeah, okay, I’m still attending my brain biofeedback and I continue reading rehab with my neurodoc and I use my home devices just enough to keep pain of every kind at bay and my body ticking along as best it can. But I’m not doing any homework. I’m not thinking anymore about how to work on this part of my injury or that part. Any thoughts on brain injury and treatments are to keep my book blog pages updated. And I’m not working at all on treating my PTSD. It is what it is.

I want to get back to normal life, what I now define as: a day not consumed by health care.

But what do I want to do? Write novels for myself. (No one is buying them and I’m not made of money to spend on taking them to the final published book form so once I write the first draft, what’s the point of revising and editing.) Philosophy of Mind requires me to read. A lot. And really hard stuff. Well, that’s not going to happen. I didn’t get the professional help when it would have made a difference. (Health care professionals are so focused on what they do and what the average is for this function or that that they miss the rare opportunities to radically help their clients.) On the other hand I learnt of the video courses on the Great Courses Plus app, which I’m wending my way through very very slowly. I enjoy photography but can’t seem to dedicate time to it and haven’t been able to in years. I can design and create websites, though it’s on/off, sucks me dry of any energy, and oftentimes feels like there’s a thick concrete wall between me and understanding the back end of a website where all the coding takes place. I can help people with brain injury, like I did last November with NaNoWriMo and like I’m trying to do with Concussion Is Brain Injury, as long as I have energy and don’t have to do it for longer than a month at a time. There are other things I’d like to do. Cooking would also be nice; to make myself yummy nutritious meals without the energy suckage would be awesome.

I return to the question: what are my priorities? I don’t know.

Brain Biofeedback

The Presbyopic Lens of the DSM Mutes this Patient with Brain Injury

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Love BotThe main character in my new novel has no voice. She’s not me, yet, too, I am muted, most recently, in the relationship with my neurodoc. It’s come to an impasse. He is clinging on with rigid ferocity to the DSM and, though he’s interested in the new ideas of neuroplasticity, he continues to adhere to the familiar-to-him chemical model of the brain, while I demand that he sees my injury as an injury, meaning my issues come out of physiological damage and as the neurons heal, what he calls moods and traits will and do suddenly disappear or flip, something the DSM and chemical models don’t account for.

He’s not alone.

Psychiatry has devolved into prescribing chemicals. Take this and see me in six weeks. If one chemical formula doesn’t work, try another or add another. In the brittle brains of medical specialists, the brain has become a chemical bath that can be manipulated by ingesting or injecting the right solid or liquid chemistry. Forward thinkers aka health policy experts and bureaucratic innovators further maneuvere psychiatrists out of that old fussy model of talking and into dispensing increasingly sophisticated variations of the same type of chemicals. Community-minded forward thinkers look to generics as being exactly the same as brand names: cures for cheaper, thus more responsible to the community, except psychiatric medicines don’t cure. They just mask and symptom manage.

Accordingly, brain injury medical specialists and mental health forward thinkers have evolved treatment beyond the intimate therapeutic alliance between physician and patient to infrequent expert consults and time-limited overview, never mind that a therapeutic alliance is the best buttress against “noncompliance.” When you’re heard and you feel cared for and you’re connected to your physician, especially your psychiatrist, you’re more likely to have your concerns heard, to be given therapy and medicine that’s better suited to your needs, and thus to comply.

But in the forward thinking brittleness of evidence-based modern psychiatry, relationships are obsolete. (That reflects our society; and we wonder why North America is in turmoil.) A relationship that respects and hears the patient, that values their insight and uses it to diagnose and treat, that works with non-medical health professionals, seems to be an anomaly. Add in the lifelong demands of brain injury that’s not static over time, where communication is challenging yet the only type acceptable by the brittle progressive psychiatrists is verbal, and you have an impasse when a patient like me objects to being unheard, devalued, and sexist and culturally stereotyped through the presbyopic lens of the DSM.

If I’d had oodles of money, back in 2009, I would have sought out a psychologist familiar with brain injury. I had been told back in 2001 — and discovered for myself — that you really need a mental health professional who knows and understands brain injury in order to receive good, effective, and understanding therapy to manage the injury and its social, psychological, and economic consequences.

I would now add: needs to be someone who is willing to learn and adopt the neuroplastic model of the brain, to learn how brain injury affects women worse than men, and how gender inequality affects their social and economic lives as well as taking into account cultural differences.

Progressive men who feel proud of how they empower women and grant them equality don’t react too well to women who’ve known all their lives that they’re equal under God and don’t need to be granted it by a man, who come in expecting to have a say in their diagnosis and therapy, even when unable to communicate in the traditional way.

Unfortunately I didn’t have money flowing out of my coffers to afford a psychologist. In Ontario’s version of Canadian universal health care, the government funds only psychiatrists. And so that’s who I had to look for. The University of Toronto has hundreds, almost a thousand, psychiatrists affiliated with their Faculty of Medicine. Of those a handful work in neuropsychiatry, maybe a few understand brain injury, and hardly any work with people with brain injury in the way they need: weekly talk therapy using a team approach with health care professionals who actively treat the broken neurons. The psychiatrist ought to provide the emotional therapy and the others the physiological treatments. Some psychiatrists are joining their psychology colleagues in moving from the DSM and chemical bath model to the neuroplastic model of actually permanently healing broken people. Some so that they can work better as a member of a team; some so that they can actually treat their patients both emotionally and physiologically. I don’t know who would pay when a psychiatrist uses brain biofeedback, for example, as part of their therapy sessions. Our forward thinking bureaucrats and politicians probably ensure it isn’t taxpayer-paid health care. And I don’t think many or any of these psychiatrists are focusing on people with brain injury.

But I bet you no one is approaching reading rehab in the way my neurodoc and I are doing it (even though I became so exhausted emotionally from begging and begging for help that when he finally assented, I could no longer do the work on my own and I’ve become mute in asking for the fullness of what I need). So somehow, though he shot our therapeutic alliance to hell with his rigid clawed grip on the inappropriate-for-brain-injury DSM, he’s committed to going out of his way to help me with regaining my reading. I think that’s a metaphor for my post-brain injury life: every heavily fought-for improvement has come at a price.

Brain Health

Growing Social Media Divide Leads to Bad Advice

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I’m not often told it might be good to avoid Twitter or to give it a break, but when I am — and when others with brain injury are — it’s by people not on Twitter or who have a lurking-only account. And who don’t know or understand how I use it.

They’re unhelpful.

They’re unhelpful because they don’t understand how Twitter works. And so they advise the blunt instrument of total avoidance instead of helping me or anyone with brain injury avoid the “negative” while allowing us to still play in the fun social sandbox.

One reason us people with brain injury are told to stop is because of “oversharing.” This is part of a larger discussion about our cultural shift to emoting more in public, to creating closer ties even with people we’ve never met in real life, to the trolls among us and how to protect ourselves from them. But the oversharing I’ve seen people with brain injury are criticized for is nothing compared to what some non-brain injury people do. I think the advice to us in this case smacks a bit of the patronizing attitude so systemic towards people with brain injury. Talking out consequences but leaving it up to the individual to decide if they can handle it is way more respectful than telling them stupid stuff like, “what will your daughter think?” Maybe their child will realize their parent is a suffering human and learn some compassion.

Another reason given to avoid it is when we’re bothered by tweets from a certain individual. In that case mute block report that individual is the better option, and I’ve written about that before.

Another reason can be overload. This is a valid concern. We people with brain injury are prone to sensory and informational overload. Couple that with impaired ability to stop, and you have massive energy drain. Years and years ago, I began to turn off the computer and go offline Saturday night and not turn anything back on until sometime on Monday (very occasionally Tuesday). That broke any addictive cycle that had been building up over the week. It also gave me the rest I needed.

The iPhone has complicated things for me because it has apps on it that I find restful or distracting. It is a computer but not a computer. It’s my second brain; it helps me function and relax. But the iPhone has the ability to connect to the online world through its data connection, and with the phone plan I have, I don’t worry about data costs. Deadly!

Worse, brain injury tends to kibosh self-control and habits are hard to keep.

But I’ve held this habit for so long that I don’t forget it, like all my other ones. And if I do sneak online, this habit keeps me from not participating. One complicating factor is I do need a data connection to message people — messaging is the new phone calling and, frankly, a lot easier to keep in touch with others no matter one’s schedule. But I’m not exactly a social butterfly anyway.

And sometimes no matter who you are, just like we all need a vacation from work or from family, having an annual or every-four-months week-or-two-week-long vacation from Twitter or Facebook is a good way to recharge the social batteries.

But for day to day, instead of wholesale avoidance, the health care provider should be suggesting:

  • Focus on your Twitter list of close friends.
  • Just look at your hobby list.
  • Muffle the political tweets that are sending you ballistic until you’re ready to get back into the game.
  • Follow your favourite Twitter chat and then turn Twitter off till the morning.

But they cannot unless they use social media. Just another reason why the divide is growing and causing friction between the patients on social media and the health care providers and friends and family members who are not — to the detriment of the patient’s social and emotional health.

Brain Health

Endless Saturday, the Day Between Good Friday and Easter Sunday

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Ramryge Angels Gloucester Cathedral PerfectlyClear SpotDarkenSharpen DupeOverlay BckgrndErase WM Shireen Jeejeebhoy 2015-03-20

It’s Endless Saturday. I used to call it Waiting Saturday. Like that day when Jesus’s disciples, particularly the women, waited for the Sabbath to be over so that they could visit his grave; like that day, the day after tragedy struck, and no one knew what to do other than wait, my life was one of waiting, of recovering from the shock of my brain injury, waiting for life to return to normal. But normal didn’t come, and my life turned into an Endless Saturday when the tragedy that caused it was behind me yet the new life of promise had not yet come despite working hard to heal my brain.

Well, it wasn’t my life or my injury that was putting me in Endless Saturday, I was informed. It was my attitude. I am surrounded, as most people with brain injury are, with messages of “move on,” “be positive,” “look at what you have, not what you lost,” “accept the changes,” “unpack the boxes of the new you,” “look at how far you’ve come.” Etc. Etc. The messages are endless and come at you from everywhere including from your peers as each brain-injury newbie goes through the same process of parroting the feel-good industry until you want to hurl all over the positivity and inspirational messages. I have never been so sure as I am now that it’s all bunk – it’s all to hide the fact that society and medicine does not want to deal with us, acknowledge our existence, and would rather we pretend we’re happy than to create a world in which we can be.

Oh-oh there goes my attitude again.

I’m not positive enough.

I don’t look at what I have enough.

I don’t appreciate how far I’ve come enough.

And then I remember England.

In less than 24 hours of arriving on England’s green and dimmer shores, I was free of my life. Toronto was behind me. Ahead of me lay 12 days of totally being allowed to be me, to be in control of my own life. Twelve days of not being at the mercy of others. Early into my trip, I mailed my biofeedback trainer a postcard from the British Museum. Yup, people still love the old-fashioned postcard. And I found a great one. She knew immediately upon reading whatever it was I wrote that I was happy. Then when I returned, my neurodoc was struck by how I “appeared markedly and significantly better.” It so dumbfounded him that he has changed his perception of my life, which he now calls my “Ontario life.”

What is the difference between my “Ontario life” before I went on vacation and after? I asked. There is no difference other than his perception and my ability to tolerate it. Actually, I don’t think there’s much difference in my tolerance: I went because I was about to crack apart.

I am again.

Ever since my “Ontario life” reasserted itself – it took only about 5 days to wallop me – I have been feeling like Wile E Coyote after he’s been conked and cracks appear all over him. I’m in that place as the cracks widen, just before he fractures into a million pieces. I am like the Angel of Denial (above), except I’m not denying the reality of my life but warding off its blows.

My neurodoc wanted to know: how many factors were responsible for me

  • being relaxed
  • my affect being reasonably good
  • not having much irritability
  • being better grounded
  • not being stressed
  • having a better quality of feeling (whatever that means) after my England trip?

Only one: relationships.

No, I lie. Two. Relationships and the energy drain of activities of daily living.

Whilst in England, I didn’t have to cook, clean, deal with Toronto’s garbage system, travel on a system that is hostile to the invisibly disabled, make the hundreds of decisions that are necessary to take care of one’s home and oneself. The biggest decision I had to make was whether to order the Continental breakfast or porridge or pancakes on the third morning of my hotel stay. Believe it or not, it took me a long time to decide because my brain injury has destroyed my decision-making ability, and it’s only slightly returned, mostly because of strategies like making the same choices in order to cut down on the number of decisions. But that day I didn’t want same-old, same-old breakfast. I wanted a treat. I had a choice of two treats I liked. That was enough to paralyse me until I asked myself for the tenth time what does my stomach want. I will rant about how much easier it is to travel on the Underground than on the TTC another day. And how English society accepts and naturally accommodates invisible disabilities.

As for relationships . . . in England, they were, in the words of my neurodoc, like a “comfortable old shoe.” Balanced, pleasant, vital, stimulating, and most of all, to my amazement, everyone looked at me as if they wanted to talk to me, as if they were enjoying my conversation. As my neurodoc put it, I wasn’t having to navigate and think my way around them and our conversations – even when a conflict arose out of my inability to express my (rather complex) idea. I was a little frustrated with myself, to be honest. But that didn’t matter. Hours later, my idea was picked up and expanded upon by one of my relatives. I was floored. And then there was the fact they told me over and over to ask for help, and when I did, help was given. Communication happened. When I needed it. Not in some time-delay fashion where I just have to wait until it’s convenient for the other no matter the effect on me.

Waiting isn’t just a matter of patience; waiting can be a matter of health and functionality. People here can’t see the difference between when waiting is about patience versus when it will affect a person’s functioning.

And now I’m back in Toronto. And once again I have to navigate people’s communications styles. One person does it one way; another does it another way. I have to remember which is which and be okay with whatever method the other person informs me is the only way they’ll communicate with me. In England, everyone texted or emailed or phoned, whichever suited me best because none of them seemed fussed about using smartphones or old-fashioned telephones or computers. Any works. They even know how to check their bloody emails and voice mails; I didn’t have to check up on them to ensure they’d received them (once I had the correct address). Or try and remember what message I left. Here, it’s a fucking nightmare of “I’m not going to blah blah blah.” (Or I’m too busy. Or I’m not interested in talking about that. Or you’re not my family. Funny then how my older cousin saw me as family.) Here, no one ever says: oh, hmmm, Shireen is the one with the brain injury, maybe we should ask her how she communicates best in order to reduce the effort it takes for her to reach out and be able to understand us. Maybe we should be the ones facilitating communication so that she’s not isolated and she has the energy to live her life, to get through her treatments, to be less stressed. I ranted that at my neurodoc. “Good point,” was his response. Uh-huh.

After my health care team saw the dramatic change to happiness in me – sans needing any positivity or inspirational shit despite still dealing with my brain injury and PTSD – they asked: are you moving?

I didn’t answer really. I was born in London. I’m a Canadian but also a British citizen.

Where do I belong?

My neurodoc noticed and said: you have unfinished business here.

He’s right, but the tediousness (my neurodoc’s word) of most of my IRL relationships will kill me. Anyone who denies the social biology of the human being and necessary interdependence is a fool. The destruction of our society won’t come from terrorism but from worshipping the gods of busy-ness and silos, from the fear of mind, soul intimacy.

And now I’m going to stomp off to watch Shaun the Sheep.

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.

Brain Health

Touch Taboo in Therapy

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This week’s reading for my ten minutes of tDCS during brain biofeedback came from my website. I decided I wanted to refresh my memory on the hypothalamus. But instead of reading Wikipedia, why not read what I’d written back in 2010 with the benefit of my trainer reading along with me, and so I could find out at the same time if any of it needed updating or correcting.

We didn’t get that far.

The image of the hypothalamus stopped us. She was very taken with it, and we began discussing the anatomy and functions depicted in the image. Neither of us could remember what ADH stood for until I scanned down the image, and there it was, defined for those who look: antidiuretic hormone. It goes to the kidneys. I read out the hormone listed next to ADH: oxytocin. It’s for births, right? I asked. Yes. But more than that.

It’s the hugging hormone.

Oh?

Apparently, the new research is showing that humans — child, teen, and adult alike — need eight hugs per day minimum. Uh… Even married couples don’t hug that often day after day. Maybe when newlywed… Kids, on the other hand, do hug that often and more. To make matters harder for us big-personal-space adults, the hug has to be a real hug, arms fully around each other, not an air-kiss hug or a one-arm hug. A real one.

Whoa, that’s pressure. And in a way as depressing as hearing how one needs good sleep for so many hours, when one’s brain injury screws up sleep every single night. And no one can do a thing about it. However, therapists could help in the hug department, except that, especially in the US, touch — and thus hugging — has become synonymous with sex and so taboo.

Therapists can use all the senses except touch in their work with clients. Eyes to observe and create a connection with. Ears to listen and hear nuances in tone of voice. Nose to smell state of cleanliness. Well, okay, not taste. We don’t lick each other like dogs do. We can only talk about how our taste changes. But touch is one powerful sense therapists, psychiatrists, and psychologists can but don’t use to calm clients, convey support, enhance bonding so that therapy can be more effective, and promote the production of oxytocin in each other.

No touching! is the recommendation from professionals and teachers to counsellors. I suspect many break it in their practice once they get to know their adult clients and discuss it with them first. I had that happen once. Can I hug you? he asked. I was unsure. I was in mega-pain, and I had never been a touchy-feely person to put it mildly. Plus he was a man, and isn’t the societal mantra that when men and women hug, it’s all about eroticism? Yet life was pretty much awful and getting awfuller. I did need a hug, and he’d seen that.

I said yes.

It was a real hug, full arms around. It was the most sexless hug ever. And it calmed me and allowed me to leave feeling slightly more able to face the rest of the day.

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.

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*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.