My TBI journey – from denial to acceptance

BY: SOPHIA VOUMVAKIS

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.

Women and brain injury: What you need to know

BY: ALISON

Men are more likely to acquire a brain injury than women, and are three-times more likely to die from a brain injury. Perhaps because of this, the media tends to pay more attention to men and brain injury. For instance, name a person in Canada who didn’t know about NHL player Sidney Crosby’s struggle with concussions from 2011 to 2012.

But there’s a lot about women and brain injury which needs to be understood. How many people know about award-winning women’s hockey Olympian Meghan Duggan’s struggle with concussion? Or about hockey player Katie Weatherston, who lost her spot in the 2006 Olympics due to concussion symptoms? Or, more recently, Nicole Setterlund, who left professional sports due to TBI?

photo
photo: Kevin Healy via flickr

Given recent evidence that females are more susceptible to concussions and have greater difficulties with recovery than men, it stands to reason the focus of attention should be shared between men and women equally.  But further research is required to understand how men and women respond to and recover from TBI differently.

Male and female brains: different but equal

Despite decades of jokes on the subject, male and female brains are, infact, different.

In general, male brains are larger than female brains, while female brains have thicker, more convoluted cortexes with more tightly packed neurons (brain cells).

Functionally, male and female brains rely more heavily on different sides of their brains when performing various tasks. Male brains have a higher proportion of gray matter whereas female brains have a higher proportion of white matter. Gray matter is made up of more active neurons which process information. White matter networks information between different areas of the brain and allows thoughts to be intergrated from gray matter, assisting with complex skills such as language.

This suggests that women’s brains are more complex, even though men and women are equally intelligent. Evidence also suggests that the percentage of gray and white matter regions involved in cognition, which are located in the frontal lobes, is drastically larger in women than that in men. Taking into account the specific location of trauma to the brain, this could explain why frontal lobe injuries can be more devasting to females than males.

Women and ABI

Concussions Rates for Men and Women

Although the majority of people who sustain a TBI are male, recent studies indicate that women are actually more susceptible to concussions and experience poorer outcomes than men. Despite the fact that more men play contact sports than women, women suffer significantly higher rates of concussions than men in these sports. Where men have a higher percentage of concussions resulting from player-to-player contact, women have a higher percentage of concussions resulting from player-surface contact and player-equipment contact. A higher incidence rate of sports-related concussions (SRCs) has been documented in females in high school sports (soccer and basketball) and college-level sports (soccer, basketball, and ice hockey). Furthermore, high school girls are more likely to have recurrent concussions than boys.

The gender-specific rates of sports-related concussions have been explained by the fact that women have less neck strength than men. Neck strength is needed to protect the brain from sudden acceleration-deceleration forces. In fact, it is already well-documented that women are more susceptible to whiplash injuries due to sudden acceleration-deceleration. TBI and whiplash are often experienced concurrently and can cause similar symptoms. Besides having stronger neck and back muscles, men also have more cartilage in the facet joints of the spine, resulting in better protection from injury.

A person’s body mass index (BMI) may play a role in transmitting force and contribute to the severity of an injury, since young girls tend to have higher BMIs than boys.

 woman on couch
photo: Tayor Mackenzie via flickr

Here’s what some of the research has found:

Hormonal Changes After TBI

Hormones fluctuate more drastically in women, making women particularly susceptible to migraines and reproductive changes after a TBI. Fluctuations in estradiol are a cause of migraines in women of childbearing ages. Concussed female soccer players report double the rate of migraines compared to the males.

One study followed 104 women with moderate to severe TBI and observed that 46 per cent of those women had amenorrhea (the absence of menstruation) lasting up to 60 months and 68 per cent of them developed irregular menstrual cycles including more skipped menses. The women also reported worsened premenstrual syndrome (PMS) and menopausal symptoms after TBI. Although the study did not see an effect of TBI on fertility, it noted that fewer female TBI survivors had live births than the controls and that those that did had more difficulties in the postpartum period.

2

Given the anatomical, hormonal, and psychosocial differences between men and women, it lends to reason that sex should be a factor when planning treatment, support, and return to school/sports/work for TBI survivors. However, further research is needed before sex-specific treatments can be developed and new medical management guidelines established.


 Alison suffered a concussion in 2013 that damaged her mind and body. The injury shook her spirit, but it didn’t take her determination or ultimately her happiness. In fact, she’s certain that she never would have found love, had it not been for her concussion. Although she went from being a workaholic to a homemaker (and a poor one at that), an extrovert to an introvert, and a partier to a hermit, she set new priorities, accomplished new goals, and found new hobbies. Some things haven’t changed about Alison; she still loves dogs, cooking, and helping others. She’s hopeful that she will one day reconnect with her love for traveling. In the meantime, she hopes to help brain injury survivors and their caregivers by sharing her experience and spreading awareness. 

 

The Pinky and Sarah love story

BY: JOHN STEVENS

This is the story of how two BIST members – Pinky and Sarah – met  (spoiler alert: it was at a BIST community meeting) and found love. 

PINKY AND SARAH HAVING FUN AT A BIST COMMUNITY MEETING
PINKY AND SARAH PERFORM WITH THE BAND COUGAR BAIT AT A BIST COMMUNITY MEETING IN 2013

Sarah Briggs was 19-years-old in January of 1994, and competing at the provincial level in the seventh race of the season in a downhill skiing event at Mont-Sainte-Anne, Que., when she suffered her brain injury.

Two other skiers had already lost control earlier in the competition in a very rough and steep area of the course, halfway down the hill. One had broken her leg.

As Sarah entered the section at a speed of more than 100 kilometres an hour, she lost one of her skis. She doesn’t remember much of the crash, only that she was trying to get up.

Sarah suffered severe facial injuries, lost two litres of blood and required 12 hours of surgery. She spent eight days in the hospital, five of which were in intensive care. Despite this, there was no mention that she might have acquired a brain injury.

Pinky’s real name is Michael Clouthier, but what he writes on his BIST name tag, and what he prefers to be called, is Pinky. He got his nickname in grade seven when his classmates noticed he liked to wear pink most of the time. Over the years, that part of Pinky’s style hasn’t changed. Spot the guy in pink at a community meeting, and it’s likely him.

Pinky says his brain injury is one of the best things that ever happened to him. That may sound strange to most people, but Pinky says nearly dying saved his life.

He says he was a ‘badass’ as a teenager, heading down a path that took him on the wrong side of the law with all the violence and danger that is involved. His mother and a friend each told him he would either be dead, or in prison, if not for a fateful day in October, 1991.

Pinky, then 18 years-old, was riding his mountain bicycle and on his way to a party to sing reggae songs at a friend’s place. He was listening to music on his headphones as he crossed a busy intersection in Scarborough. He never heard or saw the car as it quickly approached him on his right. By coincidence, a close friend happened to be getting off a TTC bus at the moment of his accident. That friend comforted and kept Pinky conscious until the ambulance arrived.

Doctors told Pinky they had to revive him three or four times. He was on life support for five weeks and spent 40 days in an induced coma. Pinky knew as soon as he became conscious that his life had changed. He spent the next year in hospital, learning how to walk and talk again.

Pinky hams it up during a Cougar Bait performance
PINKY (WEARING HIS FAVOURITE COLOUR)  HAMS IT UP DURING THE COUGAR BAIT PERFORMANCE AT BIST

Pinky says one of his mother’s friends came to visit him in the hospital. The man brought him a stuffed dog and they spoke, briefly, about religion. Their short conversation changed the course of Pinky’s life.

I thought … I went through all this and I’m still alive … (maybe God) has plans for me. God … I’m sorry I had to go through all this to be a believer. – Pinky

Pinky still has the stuffed dog from that fateful day in the hospital. He calls it CB, short for coma buddy, and still sleeps with it from time to time.

After recovering from their physical injuries, both Pinky and Sarah tried to rejoin the world they had known before. Sarah carried on with her life plan after her accident. She finished OAC and moved to Alberta to work on a Bachelor of Kinesiology at the University of Calgary. “To be a gym teacher,” she quipped.

Sarah seemed to be doing well, until she got into her fourth year. That’s when her workload changed and she noticed that everything became much harder. She also noticed she was not making good decisions in her personal life. She decided to move back to Toronto and re-enrol at the University of Toronto, closer to family and friends. It took her six years, in all, to finally finish her bachelor degree. The stress, however, was too much for her and Sarah suffered a mental breakdown.

Not one to give up, in 2000, Sarah enrolled in teachers college at Queens University. Her workload was even more intense than the fourth year of her bachelor’s degree. Things did not go well when, three weeks into school, Sarah began a teaching placement in Peterborough.

I was just trying to act like everything was normal. I didn’t know I had a brain injury. – Sarah

Sarah underwent a number of examinations and tests to try to determine what could be causing her problems. Finally, the doctors diagnosed her brain injury symptoms and told her she had probably suffered an acquired brain injury as a result of her skiing accident.

SARAH ON A BIST COMMUNITY FIELD TRIP IN 2014
SARAH ON A BIST COMMUNITY FIELD TRIP IN 2014

Sarah withdrew from teachers’ college. She says she had trouble, similar to other survivors, accepting her new reality and life. With her new diagnosis, Sarah entered the first stage of recovery, denial.

Sarah tried to go on, moving in with a sister and brother-in-law. She helped to care for their four children as a live-in nanny would. She worked part-time as a ski instructor in winter and at various odd jobs in the summer such as landscaping.

Pinky tried working at Walmart, but he had trouble keeping his interest in a job for very long. So he worked at almost every position in the store, except the cash register. After a year, he left.

At BIST community meetings, Pinky will often one of the first members to introduce himself to a newcomer. He’ll break the ice and calm first-timer nerves by showing off his rhyming-on-the-spot skills. (He can rhyme pretty much anything, except for the word ‘orange’, he says.) He enjoys music, sings and raps – even about his accident. When he and a partner decided to start a karaoke business the year after he left Walmart, Pinky thought his extraverted personality and love of music meant he was bound for success.

PINKY TAKES THE STAGE AT A BIST HALLOWEEN PARTY IN 2012
PINKY TAKES THE STAGE AT A BIST HALLOWEEN PARTY IN 2012

For three years, at least, there was success. Pinky found he had no patience dealing with drunken customers at various bars around the city. But the venture did give Pinky, an avid wrestling fan, the opportunity meet retired professional wrestler Reginald ‘Sweet Daddy’ Siki, who also happens to be in the karaoke business in Toronto.

One day in 2005, a friend told Sarah about an organization for people with brain injuries. Sarah’s friend had also suffered a brain injury after a car landed on her car from an overpass. This friend took Sarah to her first BIST meeting. Sarah says she noticed another survivor, Pinky, as she went to BIST events.

I was in awe, because I was so devastated by this thing (the brain injury) and I saw this guy. He was so positive and he was making people laugh. [His brain injury] hadn’t totally destroyed him. I thought that was so cool. – Sarah

SARAH AT A BIST COMMUNITY FIELD TRIP IN 2014
SARAH AT A BIST COMMUNITY FIELD TRIP IN 2014

Someone once asked Pinky how come he is so happy and he replied, “Like Tupac said, ‘keep your head up’…in all things.”

Pinky says he noticed Sarah too:

I thought she was a high-class woman. I (really) didn’t think she would be interested (in me). – Pinky

Both were in relationships with other people when they met, but they got to know each other as they went to more BIST meetings. Getting to know Pinky over the next three-years helped Sarah get to the point many survivors face, acceptance. “Well, this is new me, and I can live with that,” she said.

Sarah says she and Pinky eventually exchanged phone numbers, but Pinky didn’t call. Sarah later recalled being on a dinner date with someone, who happened to be friends with Pinky, and all she wanted to do was talk and ask questions about Pinky.

She was at a jazz festival in the summer of 2008, when Sarah decided to ‘take the initiative’ and call Pinky. He came by with a friend, in a car, and picked her up. The two started dating, and the “rest is history”.

Early in 2009, Pinky and Sarah were finishing a presentation about relationships after brain injury at BIST. Pinky asked Sarah to close her eyes. He told the crowd that he had to make ‘good’ on his words as he got down on one knee, pulled a small box from his pocket, opened it, and asked Sarah to marry him. They were married that summer.

Pinky has another reason to smile and another ‘best thing’ coming into his and Sarah’s life soon. They are expecting a baby this July. Pinky laughs when asked about his thoughts on becoming a father:

Daddy O…Daddy Pinky. What do you want Pinky Junior?

John Stevens is a former writer, journalist and television producer. He is a nine-year brain injury survivor and six-year member of BIST. This is his first feature since his injury.

Seasonal Affective Disorder and ABIs – is there a connection?

BY: RICHARD HASKELL

Is the holiday season really over for another year? Whether or not you celebrate, the holidays are pretty difficult to ignore, beginning with the first  appearance of decorations in early November followed by Christmas music on the radio and just about everywhere else. But by early January, the garlands, the red ribbons, the Christmas trees and the festive lights have all but disappeared.

So what does that leave us with? Dark long days and cold temperatures, with very little to look forward to until the first days of spring three months away. Is it any wonder that with the post–holiday let-down, people are inclined to feel sluggish, depressed and irritable? Even though the days have just begun to lengthen, April still seems a long way off.

photo credit: Smaku via photopin cc
photo credit: Smaku via photopin cc

Seasonal affective disorder (SAD) takes its toll on many of us. Celia Missios offered sage advice on how to combat the symptoms in December. But what about SAD and ABI survivors? Are survivors inclined to feel the effects of the dark, cold days to an even greater degree because of their brain injury?

There has been very little research undertaken on the correlation between brain injury survivors and the effects of SAD. Despite this, Dr. Celeste Campbell, a Washington-based neuropsychologist, suggests that since mood disorders are the most frequent psychiatric illnesses for patients with an ABI, SAD could be more prevalent for brain injury survivors.

Surprisingly, there has been no research specifically linking seasonal affective disorder to brain injury. Only one article, a case study, linked the two conditions. It involved  a 45-year-old female patient suffering from SAD who had also suffered a brain injury many years earlier. During the winter, she was affected by bouts of depression while her summers were marked by periods of hypomania (increased excitability.)

The patient’s ABI had come about as a result of an arterial bleed on the right side of her brain when she was 17, resulting in partial paralysis of the left side. Nevertheless, after the birth of her first child at the age of 31, she suffered a second arterial bleed that ultimately led to more periods of depression. Medication brought some degree of improvement, but over the next four years, her symptoms worsened, characterized by variations in mood, energy, socialization and sleep according to the season. In this particular study, doctors were convinced that her mood swings resulting from SAD – particularly during the winter months – were aggravated by structural brain damage she had suffered many years earlier.

photo credit: fishwasher via photopin cc
photo credit: fishwasher via photopin cc

It should seem only natural that because those who have suffered brain injuries are particularly prone to mood disorders, they would be more likely to feel the effects of seasonal change. Yet only when more research on the subject is undertaken will we be provided with more definitive answers.

Do you think there is there a connection between ABI and seasonal affective disorder? Email us at info@bist.ca or Tweet us @BraininjuryTO and tell us what you think!

Dating, Romance and Sexuality Post-ABI

Dating and relationships are complicated for just about everyone. A brain injury can add one more level of complexity. Indeed, it can seem overwhelming at times, but there are several things a person can do to help navigate through. On Monday February 27, 2012, at 6 p.m., BIST Social Worker Michelle Ratcliff will lead a workshop at the Northern District Library for people living with the effects of an acquired brain injury (ABI), along with their families and friends. The topic of the night, and her article for Torontobraininjuryblog, is Dating, Romance and Sexuality Post-ABI. 

Michelle Ratcliff

Entering into a new relationship or holding onto a previous relationship after a brain injury can be a complicated path to navigate. All brain injuries are unique, as are all relationships.  This means that starting, maintaining and ending romantic relationships will be different for everyone. People often feel overwhelmed when trying to reenter into this area of their lives.

When looking to find love with another person, it is important to start by figuring out what you want from the relationship. Some people might be looking to go on dates without a lot of commitment. Other people are hoping to settle down with someone soon.

Another important thing to remember is that relationships may be different in a number of ways after a brain injury. Depending on the injury, communication styles, emotional needs and physical considerations can alter the way a person dates and maintains a relationship, but this doesn’t mean relationships aren’t possible. Just like knowing what you want in a relationship, it is important to think about how your needs might have changed since the injury. Asking for input, advice and observations from trusted people in your life about ways to adapt and adjust may also help you to figure this part out. Understanding this aspect may not happen immediately; often people need to adjust to life post-ABI before reexamining dating and relationship needs.

One of the hardest things can be finding a date. People meet their partners in a number of ways. Some people meet through friends. Some people bump into a fantastic person in a store, at a concert, in a restaurant or on the subway. Other people try online dating. These methods aren’t for everyone, so it important to to know what you feel comfortable trying.

It’s also key to be safe when entering into new relationships. Meeting new people in public places, not giving out personal information or loaning money, and feeling comfortable to say no if you feel uncomfortable, is essential when dating.

For some, finding a new relationship isn’t the issue. Many ABI survivors were in relationships at the time of their injury. However, an injury can mean major changes to the relationship, for both the survivor and the partner. Both people will have to adjust to the changes after a brain injury, which can be a stressful period.  Maintaining a relationship is often dependant on communication. Being able to talk with your partner about your feelings, needs and wants while listening to your partner’s feelings, needs and wants is an essential part of being in a relationship. Part of communicating well with your partner may involve conversations about your injury. How to tell the person about your injury and talking about how your injury impacts the relationship can be difficult talks to start, but starting slow, providing small amounts of information at a time and planning ahead about when, where and how you want to talk to your partner can help to reduce anxiety.

Being sexually intimate is another area to figure out. For some brain injury survivors, sexual needs, functions and abilities change. This can be a major life change for people, and a major consideration when re-entering the dating world. For those in relationships before injury, both partners may have to work together to renegotiate the sexual aspects they share. Communication is important. Talking to your partner is key.

Michelle Ratcliff, BIST Social Worker.

Visit Brain Injury Society of Toronto for more information about BIST’s community meeting on the theme: Relationships, Dating and Intimacy Post-ABI


Monthly preview: BIST on love and intimacy

Sweaty palms, butterflies in the stomach, an increased heart rate.

Smiling, laughing, and sometimes, tears.

Being in love or feeling attracted to someone stirs up plenty of emotions — positive, negative and everything in between — that can be hard to navigate at the best of times.

A Couple sharing a moment at the park
Image: photostock / FreeDigitalPhotos.net

For a person with an acquired brain injury, there are a host of other challenges thrown into the mix when it comes to dating and relationships.

Consider a few examples.

A young man, thanks to his ABI, lacks sexual inhibition and often makes inappropriate comments to complete strangers, such as fellow riders on the subway. A few people file complaints and now he has to explain himself to the authorities.

A woman married 12 years finds herself acting as a caregiver for her spouse who she feels “Is not the person I fell in love with.”

An eight-year-old girl with a brain injury hits puberty well ahead of other girls her age in a process known as precocious puberty, leaving her confused and embarrassed about the changes happening to her.

Throughout this month, Toronto brain injury blog will address these and other issues relating to Love and intimacy.

In our Question and Answer, Caron Gan, a registered marriage and family therapist at Holland Bloorview Kids Rehabilitation Hospital, will offer insight into the issue of sexuality for youths aged 8 to 25.

Also this month, BIST member Ian Bowles shares his story of how he and his partner maintained their relationship after Ian’s ABI.

And BIST social worker Michelle Ratcliff provides advice for people with an ABI who are thinking about dating.

To read these articles and get other information from BIST, check out the sidebar of this page to subscribe to the blog via email or ‘Like’ us on Facebook and follow us on Twitter.

Matthew Chung, BIST member and Editor of Toronto brain injury blog

Image: photostock / FreeDigitalPhotos.net

Monthly preview: BIST takes on winter

Canadian winters.

Love them or hate them, there is no denying that
winters and Canadians’ struggle against the extreme conditions that they bring are
part of what defines us. Look no further than a 2008 survey
commissioned by Citizenship and Immigration Canada and the Dominion
Institute. With icons such as the Maple Leaf, hockey and the Canadian flag topping the list of the 101 things that best define this country, those surveyed still had winter on their minds and ranked it 85th on the list.

Whatever your feelings toward our inevitable winters, we here at BIST intend
to help you to deal with it as we roll out our first monthly theme for the blog (a new year, a new direction, right?).

Melissa Myers’ report provides vital information for anyone participating in winter sports such as hockey, snowboarding or tobogganing, with a particular focus the appropriate helmets for different activities.

While the cold temperatures and snow make for fun on the slopes and pond, they also can create havoc on the roads. Check back here later this month for tips and advice on driving in winter conditions featuring an interview with ‘The Safe Driver’ himself, Scott Marshall, director of Training for Young Drivers of Canada.

Also this month, read the first of many stories written by a BIST member living
with the effects of an acquired brain injury.

What’s that you say? You don’t want to miss a single post? Then ‘like’ us on Facebook or follow us on Twitter where we will offer links to our latest posts and other interesting articles or information relating to this month’s theme.

In the meantime, stay safe.

Matthew Chung. BIST member and Communications Committee volunteer.