After my concussion, I lived in ‘stimulation jail’ for several months (and, when my symptoms require it, I still do.) The boredom I felt was at times more insufferable than the plethora of pain and other concussion-related symptoms I experienced.
During the acute recovery phase of a brain injury, patients are often instructed, quite literally, to do nothing. Some endure this ‘jail’ for a few days to weeks. Others remain confined for much longer with no foreseeable end in sight.
I would risk worsening my symptoms just to do something, anything to help pass the time. My family would then get angry at me for overexerting myself. I didn’t know how to explain to them that boredom was causing me real pain and suffering. They assumed that I was exaggerating, until now.
Subjects were placed alone with their thoughts in sparsely furnished rooms for 15 minutes. As to be expected, most of the subjects indicated that they did not enjoy “just thinking” and preferred to have something else to do.
What surprised the investigators (but not me), was that a majority of the subjects preferred to have an unpleasant activity than no activity at all. Prior to the start of one experiment, male and female volunteers received a single electric shock.
42 volunteers said that they would pay money to avoid being shocked again. However, when those same volunteers were left alone for only 15 minutes in a room devoid of distractions other than the option to receive electric shocks, 67 per cent of the males and 25 per cent of the females chose to self-administer at least one shock.
So the next time someone invalidates your experience with boredom or confinement, you can smile and politely tell them about this study.
Mind Yourself with Alison is a collection of self-help tips, research, and personal experiences dedicated to helping people thrive after brain injury (or other trauma). You can read her other articles HERE.
Welcome to the first article in my new column, Mind Yourself with Alison. This column is about how you (or someone you care about) can thrive after a brain injury. I will focus on self-help tips, research, and personal experiences. Why? Because all the time and treatments in the world won’t be enough if you don’t recover mentally, as well.
“You seem fine to me,” may be one of the worst things to say to a brain injury survivor – or anyone with a hidden disability – for that matter. This invisibility is one reason why Laura Brydges, an Ottawa woman living with the affects of brain injury, decided she need to do something to make hidden disabilities, visible. (You may have caught the recent Toronto Star article about her from a few weeks back.)
Since that article, Brydges’ Hidden Disability Facebook page has hit 5.2K likes. She’s getting attention from organizations, individuals and media from all over North America and the U.K. But a really big moment was receiving a photo of someone from the U.S.using one of her cards.
“I have been overwhelmed. I can’t even describe the emotion,” Brydges said. Seeing that photo just touched me to the core, it made it real.”
Brydges stresses that making hidden disabilities visible is a safety issue. She lists incidents where not understanding hidden disability can have deadly results. There was a child with autism in the U.S., she says, who was shot by the police. In Ottawa, there was a child in school who has handcuffed because of misunderstanding a hidden disability. In Winnipeg, there was a veteran with PTSD who was physically kicked out of a bar because he had a therapy dog. Brydges finds these stories and posts them on her Facebook page, collecting articles which prove her point, time and time again.
Like many brain injury survivors, Brydges faces significant obstacles in her daily life, most of which are hidden. She has problems concentrating and has a low tolerance for noise or bright lights. She cannot drive or use public transit. Being in a large crowd for more than a short time can cause her to become, what she refers to as, cognitively overwhelmed, sometimes to the point of tears.
Especially in the years right after her accident, Brydges says she couldn’t trust herself to be able to respond to an unexpected situation. For example, if someone on the street was having an emergency, she would have difficulty in processing information, to, for example, call 911. A frustrated first aid responder trying to enlist her help, repeating the message to her faster and louder to her would only make it worse.
Which is why, using nothing more than an interest in desktop publishing and sheer determination, Brydges designed a symbol consisting of a blue and white figure inside a circle with the words Hidden Disability on wallet-sized cards.
Similar to the international symbol of accessibility for those with physical disabilities, the card is something Brydges feels could be used by those affected by hidden disabilities such as brain injury, autism or epilepsy. She calls it ‘a self-advocacy tool’ people with hidden disabilities can use to educate the public on the obstacles they face every day.
Brydges began working on her hidden disability symbol in 2009. A year later, through Facebook, she found 592 adults to participate in an online survey about whether there was a need for a hidden disability symbol. The result: 80 per cent of the participants (the majority of whom had a hidden disability) agreed an international symbol was needed. A few years later, Brydges asked for feedback on how to develop the symbol, which originally was a checked figure. She changed that design after learning some people had difficulty processing it.
Brydges believes there’s a need for a hidden disability symbol, and the time is right for it. “I think people with hidden disabilities are ready. They’re tired of either living very small lives and not explaining themselves or having to explain themselves over and over again when they go out,” Brydges said. “They’re tired of people treating them poorly to the point of verbal abuse and sometimes to the point of physical abuse when they park in an accessible parking spot. Even though they have a permit. I think it’s just time.”
The hidden disability symbol could be her design or someone else’s, Brydges is all about the cause, and willing to let word about the symbol spread organically. She’s made the symbol available for download, with some stipulations, and is working on improving its print quality. The front of the cards can have the name of the condition on the bottom and the back can be customized to meet specific needs of each condition.
Brydges also believes organizations which serve people with hidden disabilities have to work together. “We’re stuck in this model of ‘I have this condition’ and ‘you have that condition’ instead of ‘when we’re out, these are the common problems with environments that aren’t highly conducive to our functioning,” she said.
Inspired? Brydges thinks Hidden Disability awareness would spread even further if she could get on The Ellen Degeneres Show. You can help make that happen by filling out this online form here.
I have been the main caregiver of my son, who suffered a catastrophic brain injury in an accident four years ago.
The first thing that comes to mind about being the main caregiver for my son is the blessing of love, closeness, bonding and devotion that I’ve had the privilege of experiencing. There are no words to describe the many blessings granted me for that time with my son. It was as if he was a newborn all over again and I had a second chance with him.
He also remembers who was there for him at the hospital, day in and day out for four months, and it has shown him that family are truly the most important people in your life. What a gift that is.
The next thing that comes to mind is exhaustion, fear and anxiety. A brain injury has a very long recovery period, and may last a lifetime. So thinking about the future is not a fun experience for us. We worry who will look after him if we die. We worry if he will ever be able to hold down a job, find a wife or have children. Right now he is alone. Friends have disappeared.
His sisters are younger and not able to relate to him. All they know is he stole me from them. And they’re right, they did lose time with me. Feelings of guilt and sadness often surface in our family. But for me, the hardest thing has been exhaustion.
Caregiving demands are huge. It’s not just the care of the person with the brain injury, but dealing with insurance, lawyers and mounds of paperwork; all the time keeping the multiple doctors’ appointments, doctors’ recommendations, and implementing those recommendations; while managing the rest of your family and their needs. Such as bills. Such as school. Such as forms for school. Homework. Meals. Housework. Fun.
Obviously no one person can do all this, but you try to keep all the balls in the air, and before you know it, one drops. Maybe two. The first for me was cooking. We relied on fast foods. The second was housekeeping. The third was fun, followed by school and homework.
Jump ahead to now, almost four years later. I am so glad I made the sacrifice. I have my son, and he has made a miraculous recovery. We still have a way to go, but it has really been a miracle. I would do it all over again. Of course my Faith was what helped sustain me and the prayers of many across the world.
I tired, exhausted and worn out. But I have learned to reward myself with a weekly hair wash and blow dry from my hair stylist. Every couple of months I treat myself to pedicures or manicures. I now have services in place to help in our weakest areas of need in the home, such as housekeeping and meals, and have set up tutoring for our girls. But the best thing we did for all of us was vacations and or outings. My sister took the girls to her cottage for the first two weeks. Six months into it, I took the girls to Walt Disney World and we are going back again this year. My husband also got away with the girls to Great Wolf Lodge and Ottawa. And this summer we all went to the east coast together.
All of this takes takes time and money. The burden of being a caregiver of a catastrophic brain injury survivor is about balancing short and long term needs. Brain injury rehab is costly, in terms of time and money, but you can’t put a price on family or individual health, so you do what you have to do for survival and pray it will all work out for the best.Your life will no longer be the same. It is forever changed, but we have tried very hard to see the good in all that has come about from the bad of the accident.
Would I want to do this again? No. But if the situation arose, I would humbly jump in all over again and pray for the best!
Barb Kustec is the mother three. Her son’s accident was on Aug 20, 2011. They have been members of BIST for the past three years.
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?
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.
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.
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.
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.