I sit in a noisy café, sipping fresh, black coffee, eating a cream-filled pastry, writing in my iPhone. My brain pines for peace. My soul needs the treat, the semblance of normal life. My brain will recover; I’m going to be tired by the time I get home regardless of where I go, anyway.
They say that these little kinds of social connections, the brief encounter with a store cashier, the discussion of what coffee to drink with the barista, the fast-disappearing engagement with one’s TTC driver, alleviates loneliness. It isn’t only the big social gatherings that prevent loneliness. In fact, I would say that the big social gatherings in the absence of regular phone calls, text chats, coffee dates, email hellos, only accentuate the downward change in social status, the loss of normal relationships, and the intense isolation brain injury brings.
At the end of a very bad year, I turned my back on the fiction of big social gatherings and scrimping for the future and turned towards spending on the present to gain these many small moments of smiles and hellos with strangers who became known to me and me to them. Even though they don’t know my name.
The last time I tried to find some info on grief and brain injury, I found nothing helpful. This past week, I half heartedly looked again. I was surprised and heartened to find that brain injury grief was being recognized at long last. Skimming articles from the US and UK validated my belief that brain injury grief is a different and much more difficult beast than other kinds of grief.
Janelle Breese Biagioni wrote on Brainline: “Then we have what I identify as extraordinary grief resulting from a disease such as Alzheimer’s or a catastrophic injury such as a brain injury. This kind of grief is profound. People must grieve who they were, and the family also grieves the person who is no longer there, albeit physically present. Sadly, I think society as a whole is only beginning to understand how profound this type of grief is….”
I’m not sure society is recognizing it. After all when most health care professionals don’t and I see person after person having to subsume their grief or being labelled depressed, you know social work and psychiatric care hasn’t evolved in this area yet.
Biagioni continues: “Dr. Alan Wolfelt’s Companioning Model identifies potential grief responses as shock, numbness, disbelief, disorganization, confusion, searching, anxiety, panic, fear, physiological changes, explosive emotions, guilt and regret, loss, emptiness, sadness, relief and release, and finally, reconciliation and healing.”
I so relate to this list up to sadness. And brain injury does complicate it because it causes confusion, disorganization all on its own. PTSD also overlaps many of those listed states. How does one tease out the cause for each? How does one address multiple causes for one state and know which order to treat the causes or if best done simultaneously?
She continued: “If one is allowed to truly feel — to grieve, this will lead to mourning. Mourning is the process of taking those feelings from the inside to the outside. It is giving expression to how we feel. This may be done in a variety of ways, such as funerals, talking, writing, art, and music. Wolfelt describes it like this: “Mourning is grief gone public.”
I have to wonder if we need to develop new rituals of mourning for internal deaths, deaths like reading, identity, musical accomplishment, hobby skills, memory, specific identity memories, sense of humour, emotions, etc. And then also develop rituals when some of them return in part, distorted, not the same or maybe fully suddenly years and years later. The pre-injury person suddenly returning isn’t always welcome — it’s another change after having adapted to fundamental change and perhaps you’ve come to like some radical new parts of you, like I liked not being so self-controlled to the nth degree. It was so freeing.
Dr Rudi Coetzer on Headway U.K. wrote with great insight: “brain injury survivors and their family members often find traditional approaches and support networks are unable to adequately address the problem. Reaching the acceptance stage is difficult and by no means a certainty, but after brain injury things can be further complicated by the unfamiliar, complex and often unpredictable effects of the condition…
“From a more academic perspective, factors such as time since injury, awareness, family support, pre-injury personality traits, social networks, and severity of the injury can all influence the person’s experience of grief.
“Furthermore, there is often a focus in the literature on the loss of ‘how things were’, but again, as a clinician, working psychotherapeutically I also often hear about the grief regarding the loss of ‘what might have been’, were it not for the injury.”
I had to figure out how to bring my temperature down and stabilize my thermoregulation; I had to, have to continue, to figure out how to rehab my reading; I had to figure out how to persist in relearning skills, doing life in a new way long after bean counters in hospitals and insurance decided I no longer needed outpatient and community care. Do I have to figure out how to grieve brain injury, too?
In all things, I began with standard medical care, with learning the medical system’s usual way of approaching relearning, living with brain injury. When that showed itself to be completely inadequate, I sought better care that actually treated. They taught me things, but they too went only so far. After that, and also when I failed to find any help whatsoever for some problems, I had to seek the answer within myself from painfully pulling out old neurophysiology and psychology knowledge, willing my brain to absorb new knowledge from reading, and putting it all together through writing.
But I never thought I’d have to do that for grief!
I thought eventually I’d find someone who got it, who knew how to guide me through grieving the death of myself because they’d learnt it from experts and they’d worked with other people with brain injury. I was wrong.
Brain injury has been around for eons. Loss of self has been a known effect for eons.
So why is there no help‽
This is like hell ten times over.
There’s no help because the psychiatric model labels it depression. The neurophysiological model focuses on healing the physical brain. The therapist model extols the virtues of discovering who you are now. Friends and family model get sick of hearing the confusion, the pain, the repeating what-the-fuck-is-going-on-help-me! cry.
Eighteen years, two months, and seventeen days, and I’ve not had one consistent stretch of grief work. And I’m not alone. No wonder after a couple of decades of seemingly doing “well,” people keel over. Grief doesn’t disappear into happy positivity that the experts and family want us to leap into on the day of our diagnosis. It lurks until the work of relearning, of learning a new life, of becoming used to the routines of daily living, is done and brain space opens up. Or a bad event will throw the entire system into shock and grief flows back up like a magma flood.
What do you want, my neurodoc asked. I wanted my grief to be respected as real and different from depression and from grieving another human being; to be honoured with consistent healing work. I guess I’ll have to do that alone too. The only way I can think how is through my writing.
Watching 1 Mile To You. High school boy, runner. Loses his entire team in a bus accident. Girlfriend and friend, too. Runs to remember them. The faster he runs, the more he sees them. Remembers them. He doesn’t want to forget them.
His new coach asks:
What do you want? Your heart. The most important muscle in your body. Never rests. It remembers everything. I need your mind to know it. Your heart to know it.
He can look at pictures of his dead friend. Dead girlfriend. Text them. Watch video messages, see their smiles. And he remembers them.
But how do you grieve yourself? How do you grieve the reading slaughtered in the injury? How do you talk about lost reading like you talk about a dead girlfriend? Girlfriends who are gone don’t return distorted, damaged, done in. How do you grieve something you can’t look at, touch, watch, talk to, is a distorted, damaged, unfamiliar version of itself inside yourself? Not outside yourself. How do you grieve when you don’t want to remember yourself reading when it hurts so much? Yet the memory comes, and you remember you always saw yourself so long into the future holding a book, absorbed, silently slipping the pages over, one by one, living, breathing inside the story. You bang and bang on the doors of people to help you. To go back to that time when reading was just there and the future was certain. But no one can help though they try inside their own way.
It’s not coming back. You’re not coming back.
And then the expert calls it depression. Not grief.
It’s Christmas Day, the snow lays on the ground glistening and white. Sparkly icy flakes blow in crowds off roofs as the wind gusts into the face of walkers hurrying to get their Starbucks or Timmies. Cars hiss on the snow-wet roads, waiting alongside each other at red lights, impatient to get to Christmas breakfast or lunch or dinner, some enjoying the quicker commute others the waiting at the lights, delaying the family roar for a few more seconds.
Church walls block out the city noise. Candle flames vie with stained-glass sunlight as imperfect voices sing carols and greet each other joyfully before parting to their separate feasts. Or barren homes.
Life chatters, joy laughs, pots clang, children screech, grandparents help little hands rip paper, parents gulp down drinks, and the injured brain hides in the bathroom, driven there by conversations swirling around in an unintelligible cacophony of piercing pains. It’s either that, pleasing the family with the presence of the body without joy, the brain’s needs ignored, or sipping eggnog alone in the blessed quiet of one’s own home with no one reaching in.
If it’s one thing I’ve learned — again — from social isolation, part II, it’s that when you can’t get out, people in real life won’t reach in. A token email, a couple of messages, an offer to answer your call if you need anything without an offer to come over and bring coffee or health care, and then silence . . . until you can once more get out to where they are.
Christmas is no different.
Except that God, that Jesus, is always with you.
You can rage, cry, sniffle, marvel over a blue blue sky, take quiet pleasure in watching cardinals glare-hop outside your window, sink into a Netflix movie, and Jesus is always there with you to share in every emotion or lack. People say God keeps his promises. I don’t know. But one thing Jesus does not do that every human does: abandon the sufferer.
Pain drives people away. Pain and a broken brain invites human judgement and criticism. Pain and injury imprison you. But excluding, exquisitely painful suffering draws Jesus right in there behind the bars with you. Happy Christmas.
Rage, anger, fury: these are the emotions people with brain injury are excoriated for.
While I was in the middle of SMIRB last week, the next client walked in and actually TALKED TO ME! Like, was he blind?! Closed door. Electrode on head. Writing. Apparently, his need to know where the biofeedback trainer was trumped normal societal rules – he just had to open a closed door and ask a client hooked up to the computer a question.
Daily stressors from the usual TTC inaccessibility, usual self-centred, thoughtless commuters, usual Toronto lack of inclusive services for pedestrians blended with fatigue to grow aggravation, which sparked after the surprise of being walked in on. I blew up. I managed to keep my voice to a growl and told him I was busy. He shut the door.
Since my SMIRB screen lasts for 10 minutes, my trainer takes the opportunity to get stuff done or to go to the washroom (health care professionals should be told the day they sign up that they need iron bladders). When she returned, I managed to keep my powderkeg damp, but I was raging underneath and told her if she didn’t tell him not to do that again (it was the second time he’d walked in on me), I would walk in on him (that would end badly!). Everyone who works with people with brain injury are so cool. You’re growling and hissing and raging, and they’re like, OK, no problem. Totally unfazed.
The brain injury anger rarely shows itself since I began my hypothalamus fix, and when it does, it’s not quite as overtly volatile. And so this was the first time that I can recall I went from zero to the beast of brain injury anger while hooked up to the ADD Centre’s computer, the first time we had an opportunity to see how this kind of anger affects my muscle tension, heart rate, breathing, and brainwaves.
My trainer looked hopefully at the numbers. Um … My muscle tension was normal for me. My heart rate the same; my breathing unchanged. My busy brain, even in the harder 24–28Hz area we were training, was not off the charts. My Delta-Theta 2–5Hz had barely shifted from its level before his interruption. The SMR 12–15Hz waves hadn’t dropped percipitously. My trainer suggested maybe no change because I was in the middle of SMIRB, which is designed to get your irritating thoughts out of you. But I had to stop SMIRB because the beast was too strong for me to focus through it and write.
I did the busy brain biofeedback training screen after, working to enhance the brainwaves of relaxed, focused attention and inhibit busy brain and Delta-Theta, and right near the end of the three minutes, I could feel the beast ease back. However, I remained a powderkeg.
So now I’m wondering where in the brain does brain-injury anger reside, and I am kind of curious that it doesn’t seem to tense my muscles … or enough for the sensors to pick it up. Earlier in the session, when I had sat back during the deep breathing HRV screen, she had noted that my muscle tension rises quickly and drops just as quickly. So that might account for seeing no change. Yet …
… the beast didn’t disappear completely and my aggravation remained. My muscle tension should logically therefore still be up. But nope.
I remained aggravated not only because of the fucking TTC and city being so inaccessible while crowing about how progressive they are, but also because I’m so very tired. New ability, emotional overload, flashbacks, working on Concussion Is Brain Injury crowdfunding campaign…
And now this puzzle.
It needs a research study. To me, it says that medical and psychological professionals’ tendency to lump all kinds of anger in the same basket is just wrong. It’s long past time to study the beast of brain-injury anger.
Switching topics: last week I noted the very busy screen I had to use. Well, we’re sticking with it because no other biofeedback screen has enough room for all the parameters – enhance two brainwave frequencies, inhibit two brainwave frequencies, monitor heart rate, keep breathing even, keep muscle tension down. There’s so much info, it takes up two displays. Sigh.
My trainer watches the second display on the right for me. This two-display screen also forces me to work on my brainwaves while stressed, which after many, many sessions of using it will actually help me cope better sans conscious thinking with stressful situations. Is good but UGH!!!
My health care team is not really a team: it’s three parts linked through me, the one with the injured brain, the healing brain, the brain that has suddenly sent them into crisis mode while freaking me out. I have tried for years to get the disparate parts of my team to talk together. I’ve only succeeded once or twice with two parts like COTA and CCAC people meeting with me around my kitchen table (homecare is literally at-home care, and OMG, what a wonderful non-draining way to get care, that allows you to do more in a day than just attend an appointment, but I digress). Or when I got my neurodoc and Dr. Lynda Thompson of the ADD Centre to talk on the phone about me over a year ago.
Every now and then, I try to get my neurodoc to speak to the other members of the team, maybe CCAC or maybe the ADD Centre. The idea of all three entities holding a conference call would be utopia. Anyway, my efforts usually fail. The usual reason is no time, too busy, schedules don’t mesh or zero communication happens — missed calls — and then they forget to retry. So I struggle along.
Then one day I was informed of something, which I can’t write about yet because I’m still trying to negotiate a reversal. Suddenly: flurries of calls were made between my neurodoc and some members of my team.
Then I was scheduled for a full-cap assessment in a few weeks, and so I began the Herculean task of arranging a post-assessment call between my neurodoc and the ADD Centre to co-ordinate my reading program based on that assessment. O.M.G. I wanted to kill myself. Just to get a tentative date, I had to use email with the ADD Centre and a combination of voice mail and in-person methods with my neurodoc (and email copies that he kind of, sort of read because he doesn’t do emails you know) to be the go-between.
That became moot last week because my brain decided to get real plastic and do what-to-me is bizarre stuff after the ADD Centre changed the biofeedback protocol back to CZ. The bizarre stuff has happened last year but went away, or so I foolishly, wishfully thought. And I’ve done CZ training before and SMR training. Not my favourite place because of memories of the emotional tsunami that hit me back in 2005 (it was rectified immediately).
But this was different.
Suddenly, my neurodoc got on the horn and called the ADD Centre. The usual missed connections ensued. But there was no forgetting to retry this time. (CCAC should have been in on this action too. But, well, they have other issues on their mind.) Thank God! Because what is happening is WEIRD.
Why does it take a crisis to get health care professionals to speak with each other? Why can’t they do that as part of their regular practice to co-ordinate care, to keep in regular or at least annual touch to ensure they are staying on the same page, and to ensure no-one is missing out on major problems?
A client presents differently to different health care providers. Co-ordinated care with the GP at the centre and the patient kept fully engaged is essential when treating complex and/or multiple problems. As for trying to keep my GP in the loop . . . Well, I don’t know what to do about that systemic health care problem.
I have, in the past, kept my GP informed, but with all the emotional and PTSD difficulties, I haven’t since last year. It’s too bad that when you drop out of being an engaged patient, not even your GP will intervene, take the initiative, and call you, that is, boss you around so that you’ll get the things necessary for your health done. I miss my old CCAC person. She was good at bossing me while ensuring I didn’t get overwhelmed. Sigh.
Luckily, the Toronto Pan American 2015 Games began, and they have been a welcome distraction. I took my camera out for a spin at the free sailing races off of Sugar Beach and began checking out the cultural venues. I took photos.
I am having a full cap reassessment later this summer. But in the meantime, I had a mini one at CZ and PZ a couple of weeks ago (that’s top centre of head and middle at back-top of head where I’ve been getting gamma enhancement biofeedback). This week, I began a new protocol based on that mini assessment.
Basically, because of all the emotional shit I’m going through, the area at the top of the brain that’s involved in emotions and connects through neuro networks to the thalamus and thus to the hypothalamus and so on to the pituitary, is a mite too active in the bad worry and tired zones. They want to create calm alertness so that I can think more clearly in spite of the new sources of stress and emotional tsunamis roaring through my life and mind and in spite of the fact that my current situation does not provide as much emotional and organizational support as I had even two years ago. Clearer thinking, better focus may restore some of my functionality that I’ve lost in the last year or so. As a side note: my neurodoc told CCAC recently I’m prone to regression. Yeah, understatement. As my GP once said: healing is not a constant upward trajectory. Sigh.
Still, my brain has apparently healed enough at CZ that I’ve graduated to an ADD protocol: enhance SMR brainwaves (12-15Hz), inhibit delta, theta, alpha but NOT high alpha brainwaves (2-10Hz), and inhibit busy brain aka ruminations aka hamster on steroid wheel brainwaves (22-35Hz).
We’re not inhibiting high alpha, that is, 10-11Hz brainwaves because they’re involved in creativity. One thing we don’t want to do is reduce that in me!
I noticed right away my perceptual area was closed in. I hadn’t realized how much gamma brainwave enhancement training near my occipital lobe had opened up my perception until we began training SMR at CZ this week.
Also, my anger in no way dropped like it usually does. This may not be good. My neurodoc had told me this week to lower my expectations of myself, for I may manifest anger unexpectedly or certain people may fuel my triggers (I gather because of my emotions waking up and making me re-experience my memories, now with emotions, and with my PTSD being so active). Without the de-stressing effect of gamma enhancement his words may become a bit too prophetic.
And of course with starting a new protocol, I was dead tired. My eyes felt like fat pigs after being forced to run a marathon and my brain a sloth who’s had to walk a 10k. Dark chocolate with coffee time!
Click on one or all of the titles for definitions used in this post:
I’m not in the mood for writing. I finally trundled over to the vampire clinic, starving from over 14 hours of fasting (I kind of miscalculated the time To stop eating). This was a triumph. It took only six *cough* months and a few reminders from my neurodoc to get meself to the blood lab so that my GP can monitor my glucose, lipids, and Vitamin D.
But you know what it’s like. First, winter. Who wants to schlep through the cold and snow to shed layers so that your elbow can be jabbed. And then there’s the whole cold and flu thing. Then, well, I’m off on vacation. No way getting pricked before and after. Gotta save up my energy. Then there’s the whole I-hate-needles thing and the pain . . . Ouch! Although I must admit that never stopped me going before 2013. I just complained, dragged my mother along, and went. Finally, I just forgot.
But eventually, my neurodoc got me emotionally stable enough for me to endure the test because at the end of the day, the real reason I wasn’t going was I have too many things on my plate, too many emotions waking up and swirling like tornadoes in my head, too many memories of going to too many medical appointments alone having to advocate for myself alone, that I couldn’t tolerate one more thing. And overcoming my brain-injury-induced initiation deficit was beyond me even for the cause of better health, the one driver normally stronger than my deficit.
I guess this is living with PTSD, where even a simple battery of tubes sucking your blood out is too much.
But the advocacy never ends. I had to get my Vitamin D tested. It was too high last time. My father had told me OHIP will cover the test in that case. Oh. You mean, I don’t have to pay $50 for an important, preventative-medicine test under our free medicare system? Nope. You just need the code.
I asked my GP’s office. They thought it was free. Um, no. My GP didn’t know the code. My neurodoc didn’t know it offhand. Since I’d run out of time and knew if I didn’t go on the early morning I’d decided on — and of course I made all these calls last minute — it’d be months before I tried again.
So in I went to the blood lab and asked about this free Vitamin D test. They looked at my lab requisition form and said, well, first off this requisition has expired. Yes, folks, I had stalled too long. Oops.
Thanking the gods I have an iPhone and don’t have to hunt for a payphone or beg to use a phone anymore, I prayed my GP’s office was open. It was. His very sleepy-sounding secretary answered, and she, the wonderful woman that she is, faxed a new form to the lab with the magic words on it — “Vitamin D insured.”
That’s the code to getting this important test covered by OHIP. Now my docs will know. And I await my test results . . . well, assuming I hurdle my next internal barrier, seeing my GP to hear what my blood has to tell.