My TBI journey – from denial to acceptance

BY: SOPHIA VOUMAKIS

I’ve been thinking lately about the grieving process I went through after I sustained a traumatic brain injury (TBI) in May 2011. It was a long and difficult journey.

Swiss psychiatrist Elisabeth Kübler-Ross first introduced her five stages of grief in 1969. Although the theory was developed as a result of her work with patients who were dying, the theory has been used to describe the grieving process people typically go through when they sustain other types of losses. The Kübler-Ross stages of grief are: denial, anger, bargaining, depression, and acceptance.

From my own experience grieving my TBI, I would add two more stages prior to acceptance: awareness and adjustment.

photo credit: Into the deep via photopin (license)
photo credit: Into the deep via photopin (license)

In sharing my journey through the stages of grief, perhaps other TBI survivors, their families and caregivers will better understand the emotions and behaviours that TBI survivors exhibit as they move from denial to, hopefully, acceptance.

I did not experience the stages of grief linearly, I did, and still do, almost four years later, float between the different stages. It is also possible that an individual may not experience all the stages.

Denial

The first thing I did when I awoke in the hospital was to call the office to let them know I’d be a little late coming in that morning. There was nothing wrong with me even though I had been unconscious for over an hour, my body was badly banged up, and as we were to discover later that morning, I had a brain hemorrhage.

My denial continued for months – I returned to work within two days of being released from the hospital and struggled.

Anger

I wasn’t coping well with my return to work. My bread and butter had been research – numbers and statistics. I quickly discovered that I could no longer make sense of numbers charts, graphs, and statistical analysis.They were incomprehensible to me. Panic and then anger overwhelmed me.

photo via
photo credit: ancientchristianwisdom.com

Bargaining

My family doctor recommended three months off work. I bargained with her and myself and agreed to three weeks. I then attempted another return to work. Again, I couldn’t cope. So I struck another bargain with myself and my doctor, to work half-days. When that didn’t work, anger reappeared.

Depression

Realizing that I wasn’t coping in my professional and personal life lead to depression. What was the matter with me? On some level, I understood that the physical exhaustion, loss of my ability to make sense of numbers, and mental fatigue was somehow related to my injury, but I was determined that this injury was not going to impact my life – denial once again!

Awareness

In August 2011, my neurologist referred me to an occupational therapist for an assessment. Again, denial reared her head – there was nothing wrong with me and I didn’t need an assessment. Luckily, my family who had noticed the myriad of physical, cognitive, and emotional difficulties I was experiencing, but denying to myself, encouraged me to go for the assessment. It was during my assessments and subsequent treatments that I began to accept that my injury had left me with physical, cognitive, and emotional deficits. Anger, followed by depression resurfaced.

Adjustment

This phase started in September 2011 and continued for almost two years. During this time I worked with my occupational therapist, and together we developed strategies to deal with the physical, cognitive, and emotional impacts of my TBI. These strategies included: physical exercise, cognitive training, and the adjustment of my environment.

photo credit: Dead flowers still on stems via photopin (license)
photo credit: Dead flowers still on stems via photopin (license)

Acceptance

It took me a long time to accept the new me and my new reality. When I am diligent about employing the strategies I developed with my occupational therapist to cope with my deficits I have a good day. When I forget, and slip into denial again, my days are not so good. This is once again followed by anger and bouts of depression. Luckily, these don’t last too long; because I am now aware of the impacts of my TBI, and I go back to diligently employing my coping strategies.

I found that having a framework by which to make sense of my emotions and behaviours as I went through my grieving process helped me to understand that what I was experiencing, and the decisions I was making were not at all unusual for a person grieving a loss.

Since her TBI in 2011, Sophia has educated herself about TBI. She is interested in making research into TBI accessible to other survivors.

The importance of family in rehab

BY: JODI HARENDORF

A few months ago, my husband and I were invited to our youngest daughter’s high school for an academic award ceremony. As I sat with about 200 other family members waiting for our kids’ names to be called, I thought about how lucky she, and the other students, were that so many parents and family members could be present for this special occasion.

PHOTO CREDIT: BRAIN LINE
PHOTO CREDIT: BRAIN LINE

I also thought, what would happen if I couldn’t have been there to support her? Would her life have been significantly affected if I hadn’t had the luxury of being able to reschedule my work day to be there? Of course not.

But what happens to people who suffer traumas who do not have a support system? Who advocates for them when they cannot advocate for themselves? Who helps them navigate through the complexities of the medical, legal and insurance systems? Who sits by their bedside, and cares for them during the early days of recovery? Who holds them when they cry and cheers them on when they succeed?

The support system plays such a significant role in the recovery and therapy process, and can also significantly affect the outcome.  The process of recovery from a serious trauma or injury is difficult enough without having to go through it alone. How does someone who cannot communicate make their wishes known? How does someone who needs care or supervision rely on strangers to provide this care? To have familial support can be the difference between someone finding the strength and motivation to cope and carry on versus giving up.

The family plays such a crucial role in the rehabilitation and recovery process that some would say that it is one of the most critical factors in determining outcome.

I’ve had two very similiar cases recently, men with significant brain trauma which had rendered them in prolonged coma (approximately four months). One client has a mother who was at his bedside 12-15 hours per day. She talked to him, changed his diapers and generally cared for him. The other client has no family in the Toronto area.

Upon wakening, both clients were non-verbal and non-weight-bearing. They both had tracheostomy and were fed through a G-tube.

Today, the client whose mother was with him all day is living with her. He is weight-bearing, verbal and despite some swallowing issues, he is able to eat and is engaged in a full multidisciplinary rehabilitation program. He also volunteers and attends a gym, but will always require access to 24-hour care. The other client is in a semi vegetative state. He is non-verbal, does not voluntarily move, does not consistently respond to cues, continues to have a tracheostomy and is fed through a G-tube.

Did the presence of family make the difference in these two cases? The hospital staff of the client who had his mother at the hospital stated that they believe the client’s outcome was a direct reflection of his mother’s daily presence – caring for him, nurturing him, talking to him and being available throughout his hospital admissions and post discharge.

What will the outcome be for my other client? Who comes to visit him daily? Who talks to him, who cares for him? Where will he live should his cognitive status improve? How motivated will he be to recover or engage in rehabilitation without someone supporting him? I fear that this client may remain in hospital indefinitely.

Jodi Harendorf has been working as a case manager in the field of rehabilitation in the private auto sector for the past 29 years.  She is the owner and manager of Catastrophic Injury Management, Inc. and has developed partnerships with many service providers / lawyers / insurers also working in the private auto sector. Jodi is also a Canadian Certified Life Care Planner. 

 

An Open Letter to Premier Kathleen Wynne re: proposed changes to no-fault accident benefits

The BIST board of directors has written a letter to Premier Kathleen Wynne and MPP Eric Hoskins to express our opposition to the proposed changes to no-fault accident benefits as outlined in the Ontario budget.

As described in the letter, the changes aim to drastically reduce available no-fault accident benefits for the most seriously injured motor vehicle accident victims in Ontario, which include many brain injury survivors. 

Concerned? You can sign the petition expressing your opposition to the changes and send a letter to your MPP. We’ve drafted a sample letter you can use, or you can write your own.

To find your MPP – enter your postal code on the Election Ontario site hereRemember your electoral district, and click ‘Information on your Member of Provincial Parliament’.

If you’re on Twitter or Facebook – help spread the word about the proposed cuts, and share or re-tweet our messages. Mention @BrainInjuryTO in your Tweets!

There is a rally planned at Queen’s Park on June 3 (tentative). We will update everyone  when more information is available.


 

The Honourable Kathleen O. Wynne, Premier of Ontario and
Honourable Eric Hoskins, MPP St. Pauls

Dear Premier Wynne and Mr. Hoskins,

The Brain Injury Society of Toronto (“BIST”) is a non-profit charitable organization which represents the interests of and advocates for individuals with acquired brain injury (“ABI”) and their family members in the Toronto area.

On behalf of the Board of Directors, I am writing to express our opposition to Schedule 17 of Bill 91, an Act to Implement Budget Measures and to Enact and Amend Various Acts in Ontario (“Schedule 17”). Schedule 17 will drastically reduce available no-fault accident benefits for the most seriously injured motor vehicle accident victims in Ontario. These proposed changes will worsen the lives of many ABI survivors and will increase the burden on our already overly strained publicly funded health care system.

Our primary issues with Schedule 17 are the following:

  • We oppose the proposed drastic reduction of available attendant care benefits and medical and rehabilitation benefits for catastrophically injured ABI survivors. Under this Budget, people with severe ABI, spinal cord injury, blindness or amputation will see their lifetime auto insurance health care benefits reduced from $2,000,000 to $1,000,000. This 50% reduction in available benefits will make life much more difficult for ABI survivors and their families. These vulnerable people are precisely the population that the auto insurance product was designed to protect.
  • We oppose the proposed re-definition of the term catastrophic impairment in the Statutory Accident Benefits Schedule. Our understanding is that this definition will be re-defined to make it more difficult for ABI survivors to access the higher level of benefits available to people with catastrophic injuries. The Liberal government is going to be exponentially harming ABI survivors and their families by concurrently reducing the non-catastrophic coverage while further restricting the ability of people to be confirmed as catastrophically impaired.
  • We oppose reduction of the standard duration of non-catastrophic medical and rehabilitation benefits from ten years to five years for all claimants except children. The shortened duration of medical and rehabilitation benefits is going to leave ABI survivors with poorer long-term outcomes and will therefore place a larger burden on the O.H.I.P. funded system.
  • We oppose the elimination of the $185 per week non-earner benefit beyond the two year anniversary of the motor vehicle accident. In order to qualify for this benefit, an accident victim must already have suffered “a complete inability to carry on a normal life.” People who qualify for a non-earner benefit are profoundly impaired. By eliminating this $185 per week non-earner benefit for people who were not working at the time they were hurt, your government is increasing the burden on the Ontario Disability Support Program and the Ontario Works program.
  • We note that Schedule 17 links the $30,000 deductible for pain and suffering claims in tort claims to inflation. We would like to note that the income replacement benefit in the auto insurance product has been capped at $400.00 per week since 1996. If this amount were linked to inflation it would currently be $570.85 per week.

On behalf of our organization, we are writing to express our opposition to Schedule 17. Reducing the available coverage to such a great degree will certainly result in ABI survivors receiving less privately funded medical and rehabilitation. Individuals who do not receive full compensation for their losses often end up relying on government funded organizations for the care and services that they require. In the ABI service sector, publicly funded services are already stretched to the breaking point. There is no capacity in the system to meet the needs of the current demand let alone any additional demand that would be diverted as a result of these changes.   Wait lists for specialized ABI residential services exceed 10 years and in some jurisdictions are non-existent.

It is the position of BIST that Schedule 17 should be amended so as to eliminate the changes to the definition of catastrophic impairment and to maintain the current level of benefits available to the catastrophically impaired. We also recommend that non-catastrophic claimants continue to have 10 years to use their benefits, that the income replacement benefit be linked to inflation and that the non-earner benefit remain payable as it is under the current system.

Thank you for your consideration of our letter.

Yours very truly,

Judy Moir, Chair of the Board of Directors

Brain Injury Society of Toronto

Guest post: Brain Girl Next Doors Cat

We are thrilled to present this post from Lauren Vandal of Braingirl and Next Doors Cat 

BY: LAUREN VANDAL

When my brain injury happened just over two-and-a-half years ago years ago, I never expected the next 30 months to involve so much suffering, learning, pain and discovery. It still astounds me when I look back over that period and see how much I’ve endured. Throughout most of it I’ve had support from various health and social care professionals but the journey hasn’t always been smooth or easy.
Source:
Source: BraingirlandNDC Twitter
I live in Northern Ireland which is classed as part of the U.K. so thankfully there is free healthcare known as the NHS. I am thankful on a daily basis for the help I have received, from life saving brain surgery to psychology to occupational therapy and everything in between (regular GP visits, blood tests, hospital appointments). When I hear of how some of my new-found brain injury ‘family’ are struggling over-the-pond to access good healthcare and disability benefits, I’m even more thankful.

 

There is lots of help available through the NHS but this is where the joined up thinking loses its way. I’ve had to work for all the help I’ve received. There are gaps in service (which seems to be universal, not just an U.K. issue) which if handled correctly could make a huge difference to someone’s recovery. For example, I was discharged from the neuro ward with no information. None. At. All. I didn’t know what had happened to me, I didn’t know what was to come and I didn’t know of the resources available. I struggled with what I was going through until a rather clued in GP referred me to something called the Community Brain Injury Team and it was through them I could access everything I needed.

 

There seems to be no set protocol for discharge from hospital in the U.K., some people get sent to the neuro rehab unit and the natural follow on from there is community support. Some people, like me, just get sent home and have no idea what to access. Now, admittedly, I was presenting well with no physical deficits, so no rehab unit for me. But why we weren’t informed of community help, I’ll never know.

 

Source:
Source: BraingirlandNDC Twitter
There are a myriad of things that can go askew with your body after a brain injury but there are no automatic procedures to test the common issues and you have to wait until you feel like you’re losing your mind before things get investigated. Even then, medication for depression is suggested before investigating things such as hormone levels, pituitary gland function or simple vitamin levels.

 

To get through brain injury you have to educate yourself, find out what others experience, and find out how ABI can affect your body. Before you take any medication, vitamins or other treatments MAKE SURE other things have been checked. Brain injury is a mystery, no one can really tell you how it will manifest or how it will heal but you are entitled to as much care and follow through as other serious health conditions receive.

 

I met another brain injury survivor last week who told me she has received no help at all through her struggle and was informed that if she’d had a heart attack that the system is there for that, the support, the follow through and the knowledge. I’m not saying our GPs are not skilled and wonderful because they are, but more info is needed on brain injury. There have been times where I’ve presented distressed at appointments and just been shrugged at, literally. This doesn’t sooth me or help me.

 

So this is where my veracious appetite for reading and knowledge saved me because I go armed with that to each appointment and use it to help me. I sometimes feel like a nuisance but at least I know I’m getting on the right track. I’m now finally getting the right tests done and can see the light emerging. I’ve also just recently moved house and got a new GP who completely knows his brain injury onions and this makes for such a good relationship.

 

So yes, I can relate to your struggle wherever you are in the world. Please keep searching, digging, connecting, reading and looking for that health professional who is on your team. Do not take no for an answer, this is your health and if you feel something’s ‘off’ it usually is. Brain injury is truly a silent epidemic. This is not an easy ride. You need strength, resourcefulness and tenacity above and beyond the norm. But little-by-little, piece-by-piece you come back to your body, to yourself, a little bit skewed, a little bit ruffled, but you eventually inhabit your new self and start to learn to live again.

 

Lauren Vandal lives in Northern Ireland and blogs about her journey through brain injury at braingirlandcat.wordpress.com

CTE Diagnosis – when will it happen?

BY: RICHARD HASKELL

Chronic traumatic encephalopathy? CTE?  Say that again? To be sure, outside the medical profession, a term such as this may be daunting. It refers to a progressive and degenerative brain disease that persists over a period of years, not that much different from Alzheimer’s, Parkinson’s, or early onset dementia. It breaks down part of the brain, causing it to deteriorate and lose mass, and in so doing, affects how a person behaves and functions.

Yet unlike other types of cognitive deficiencies, scientists know the root cause of CTE: repeated head trauma. 

photo credit: 124. The UT via photopin (license)
photo credit: 124. The UT via photopin (license)

Chronic traumatic encephalopathy was originally termed dementia pugilistica or in layman’s terms, ‘punch drunk.’ It was first noted in boxers during the 1920s who suffered from impaired movement, confusion, speech problems and tremors. (Now dementia pugilistica is recognised as a variant of CTE.) CTE was first documented in medical literature in 1996, and is caused by a number of neurological changes in the brain primarily due to a buildup of an abnormal protein known as tau which serves to stabilize cellular structure in the brain’s neurons. With repeated trauma, the tau becomes defective and begins to congregate in clumps, thereby disrupting the brain’s function.

What are the Symptoms?

It would be difficult to name a contact sport today which doesn’t involve some risk of head injury. Football, hockey, rugby, boxing and even soccer are all sports where players face the possibilities of concussions which can lead to an ABI. But until a few years ago, such injuries were not taken seriously – they were considered ‘just part of the game’ – something to be expected. So what if a player got hit on the head was maybe even knocked out? The prevailing attitude was, “You’ll be fine in a day or two, so now get back on the field, the rink, or the ring and WIN!”

It wasn’t until medical practitioners , not to mention teammates, friends and family of those afflicted began to notice long-term effects such as mood swings, depression and in the worst cases, suicides, that the seriousness of head trauma began to be taken seriously. The clinical symptoms associated with CTE vary in severity, but initial signs may include the following:

  • Deterioration in attention, concentration, memory
  • Disorientation
  • Confusion
  • Dizziness
  • Headaches
  • Lack of insight
  • Poor judgment
  • Overt dementia
  • Slowed muscular movements
  • Staggered gait
  • Impeded speech
  • Tremors
  • Vertigo

Currently, medical practitioners believe there are four distinct stages of CTE. During the first stage, an individual may suffer headaches and confusion, but by the time he or she reaches stage two, there may be evidence of social instability, erratic behavior, memory loss, depression and the initial symptoms of Parkinson’s disease. The third stage includes symptoms such as executive function problems, difficulty in judgment, speech difficulties, lack of muscular control and difficulty in swallowing. In the fourth stage, full-blown dementia occurs.

Photo credit:
Photo credit: Dead Spn

A New Breakthrough

Until a couple of years ago, the only way of testing for CTE was though conducting a postmortem on the brains of the deceased using a microscope to analyze cells.

Nevertheless, a study early in 2013 seems to have finally opened the door to diagnosing CTE in living test subjects. It was headed by Dr. Gary W. Small, an author and professor of psychiatry and biobehavioral sciences at UCLA and funded by a $100,000 grant from the Brain Injury Research Institute (BIRA).This non-profit organization in California was founded by neurosurgeon Dr. Julian Bailes and Dr. Julian Bailes, a pathologist who identified the first case of CTE in a former NFL player in 2005.

Photo credit:  sportsmd.onpointdigitalmarketing.com
Photo credit: sportsmd.onpointdigitalmarketing.com

The study was conducted on five patients between the ages of 45 and 73, all of them former NFL players with a history of at least one concussion. It made use of a radioactive biomarker that Small had co-invented for diagnosing Alzheimer’s disease. In the study, a compound known as FDDNP was injected into a vein where it circulated through the body and attached itself to any tau the brain happened to have and which could be seen by means of a scan. In all five players, the scan ‘lit up’ for tau, particularly in the areas of the brain which control memory and emotions. In addition, the tau patterns were consistent with patterns detected in post-mortems of people diagnosed with CTE. Think of a Geiger-counter!

Small felt that if scientists could begin to diagnose the disease while a patient was still alive, the method of detection could potentially lead to better understanding and treatment for those afflicted while helping to prevent future occurrences.

Dr. Robert Cantu, a senior advisor to the Head, Neck and Spine Committee at the NFL, commented:

“This is the holy grail if it works. This is what we’ve been waiting for, but it looks like it’s probably preliminary to say they’ve got it.”

While autopsy remains the only definitive means of diagnosing CTE, Small’s study has so far proven to be the most promising of several research projects, all of which aim to get inside the skull and seek out potential brain damage before it’s too late.

Sadly, it was too late for NFL football defense Dave Duerson and linebacker Junior Seau, both of whom died of self-inflicted gunshot wounds to the chest. Duerson died in February 2011, leaving behind a note requesting his brain be donated to research. Autopsies revealed both players had CTE.

Duerson’s suicide note. Photo by Marc Serota/The New York Times/Redux
Duerson’s suicide note. Photo by Marc Serota/The New York Times/Redux

And it seems some players might not want to let others know they have it. In the words of former NHL right-winger Matthew Barnaby:

(Hockey is) a big business and there’s a lot of money involved. We all know as players, we know what management thinks of guys who have had one, two, three concussions, whatever the number may be. Every time you have one more diagnosed, you’re thought of as damaged goods and your price tag when you become a free agent is going to go down. There might not be anyone come calling.

Yet Toronto Maple Leafs goaltender James Reimer feels differently:

 This is like that question, ‘Do you want to know right now the day you are going to die?’ It’s not an easy question to answer. But I think the more knowledge you have about your medical situation, the better. It helps you make more informed decisions. If you have a torn ankle, you want to know how badly torn it is. Same with your brain, if it’s damaged, you want to know how bad.

Potentially, athletes who now show signs of CTE could use the information to decide whether or not to retire and when, thus preventing further injury. But according to Bailes, a lot more research is needed before that can happen.

The Future

Concussions are being treated more seriously now than ever before. No longer are they being perceived as a mere ‘bumps on the head.’ And together with this greater awareness is an increase in corporate support.

The NFL’s latest collective bargaining agreement sets aside $100 million to put toward research, much of which is expected to go to brain injury. But so far, only $1 million has been distributed—to Boston University’s Center for the Study of Traumatic Encephalopathy.

And the issue of funding is a tricky one. Dr. Charles Bernick of the Cleveland Clinic and one who has undertaken studies on the relation between boxing and brain injuries, explained, “Doing studies like this requires funding, but if you’re heavily indebted in an agency that has a vested interest, there can be a view of a conflict of interest.

Still, it’s a start – and most definitely a step in the right direction. CTE testing on living subjects may well be “the holy grail” with respect to brain injury research, but it will take both time and money before it becomes standard practice.

In the mean time, players who have suffered multiple concussions watch for signs and wait for more research. NFL Super Bowl champ Ben Utecht composed a song ,dedicated to his wife and daughters, about an aging football player who fears he may not remember the names of his family one day due to disease from multiple concussions.

Will new research help treat excessive sleepiness post TBI?

BY: Sophia Voumvakis

In May 2011, I sustained a traumatic brain injury (TBI). My TBI left me with a number of physical,cognitive, and emotional deficits. Working with an occupational therapist, we were able to identify these deficits develop a number of strategies to help me compensate for them. I will be eternally grateful for the help I received from a compassionate and eminently capable occupational therapist.

photo credit: 3/365 - Self Portrait for 365X3 via photopin (license)
photo credit: 3/365 – Self Portrait for 365X3 via photopin (license)

The one deficit that I have found the most difficult to accept is my need for more sleep. My two-hour afternoon rest period, actually, a nap, is sacrosanct. I am unable to function without it. This nap is in addition to a good nine hours of sleep a night, much more than I needed before my injury. My need for more sleep has made a huge dent in the number of productive hours I have in a day.

Whether the TBI is mild or severe, at least 25 per cent of patients experience some disturbance in sleep and/or level of daytime arousal following their injury. These symptoms can impact recovery and contribute to disability.

Most doctors will tell you that increased need for sleep arises because it takes time for the brain to heal; even a mild concussion can disrupt neural fibres and that mental activity may take much more effort following such an injury.

photo credit: Cat Naps via photopin (license)
photo credit: Cat Naps via photopin (license)

I recently came across an article by Dr.Barbara Schildkrout where she discusses new research in pleiosomnia, the need for an unusual amount of sleep in a 24- hour period. This research may point to new treatment approaches for this common symptom of TBI.

Schildkrout discusses the findings of two research studies which draw attention to the fact that injury of the hypothalamus is common in TBI. The posterior nucleus of the hypothalamus which contains histaminergic neurons is most affected by injury. Histaminergic neurons are part of a the body’s system which control wakefulness. The researchers suggest that a consequence of shearing forces at the point where the hypothalamus and the midbrain meet during head trauma is the loss of histaminergic neurons.

The research also identifies a less substantial but still significant loss of hypocretin/orexin neurons and melanin-concentrating hormone (MCH) cells in the hypothalamus. Scientists know that these types of neurons and hormones are involved in regulating arousal and sleep. In individuals with narcolepsy (frequent and excessive sleepiness) the hypocretin/orexin neurons are deficient or absent. MCH neurons are involved in both REM and non-REM sleep and are thought to promote sleep

The authors suggest that their findings point to a new approach for treating post-TBI patients who experience the need for extra sleep. Drugs which increase histamine signalling to the brain may prove helpful in the management of excessive sleepiness in TBI survivors. One such drug, Pitolisant, is being tried with some success in patients with narcolepsy and might prove helpful to TBI survivors, who like me, suffer from excessive sleepiness.

In my life before my TBI, I was a researcher. I had a passion for conducting both primary and secondary research and then communicating the results of that research in an accessible way. I hope that this is what I’ve done here, and I hope to do more of it in the future. Now, it’s time for my nap!

Since her TBI in 2011 Sophia has educated herself about TBI. She is interested in making research into TBI accessible to other survivors.

Trying to get back on the reading rehab track

Shireen Jeejeebhoy writes about her journey back to the love of reading. You can read full articles about Shireen’s reading rehab on her blog.

“What do you want me to say to get you reading again?” My neurodoc asked me.

“I don’t know,” I shrugged.

About a week after I got back from a vacation in England, my neurodoc called and gave me my new reading homework. Same regimen as before: read two paragraphs after doing the skeleton, read out loud and slowly enough to avoid a headache and to enhance accuracy, and read every two days.

Photo:
Photo: Toronto Review of Books

I half-lowered my eyelids, slanted my brows, and stared mutinously and exasperatedly and frustratedly into the distance. He repeated he wants to help me; his goal is to make me better. He continued in that theme for a few minutes.

I began to process his words. I believed him, yet … I continued to process his words over the next hours. I began to think:  maybe I can read two paragraphs from my reading homework during brain biofeedback. But should I tell him?

Several months ago, my neurodoc pointed me to a series called In Treatment for research into one of my books. In one of the videos, the narrator talks about testing the therapist. I guess that’s what I’m doing. How committed is he? Will he rely more and more on me to motivate myself in spite of me telling him I need him to be that for me?

Photo:
Photo: 4bpblogspot.com

For me to initiate and motivate myself takes a tremendous amount of energy. Never mind the emotional toll of feeling like I’m walking the treadmill of recovery alone. The treads on my running shoes are worn out. I need to know that there is at least one person on this planet who will be my Go Button, who will encourage me sans irritating me (not easy, I admit), and won’t expect me to carry on by myself while at the same time asks me if I’m pushing myself too hard.

So in the end, I did the skeleton and read two paragraphs during brain biofeedback. My forehead felt thick with effort, and my limbs became weak. But my gamma went up and my heart rate came down. He didn’t ask me about my reading when I spoke to him, and I didn’t tell him. My neurodoc’s homework instructions were to read every two days. I will try again next week.

Shireen Jeejeebhoy sustained a brain injury in 2000. Since then she has written several novels and the book Concussion Is Brain Injury, but reading books remains a struggle. She is trying for the umpteenth time to regain that lost love. Go to her blog to read the full version of this article.