Is it the right time for a hidden disability symbol?

BY: RICHARD HASKELL

“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.)

LAURA BRIDGES; PHOTO CREDIT: RG WHITE
LAURA BRYDGES; PHOTO CREDIT: RG WHITE

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 panic, 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.

THE HIDDEN DISABILITY SYMBOL
THE HIDDEN DISABILITY SYMBOL

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 feeback on how to develop the symbol, which orginally was a checked figure. She changed that design after learning some people had difficulty processing it.

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HIDDEN DISABILITY OPTIONS PRESENTED IN THE SURVEY

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, Brdyges 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.

One mom’s perspective: caring for a son with a brain injury

BY: BARB KUSTEC

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.

Barb Kustec with her son
Barb Kustec with her son

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.

dirty laundry
photo credit: DSC_0611 via photopin (license)

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.

pedicure
photo credit: My Toes via photopin (license)

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.

Nominate a BIST vollie for the Volunteer of the Year Award!

Do you know a great BIST volunteer who goes above and beyond the call of duty – every time?

Nominate them for the BIST Volunteer of the Year award!

Volunteer of the year award 2015

Eligibility:

  • Actively involved in BIST (attends community meetings, committee meetings or events)
  • Makes an impact on BIST and its members and services
  • Is a current a BIST member
  • Is not currently on the BIST board of directors

Complete the BIST VOLUNTEER OF THE YEAR NOMINATION FORM and send to info@bist.ca!

Women and TBI: What you need to know

BY: ALISON

Men are more likely to acquire a TBI 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 also: 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 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 affect 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.

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Given the anatomical, hormonal, and psychosocial differences between men and women, it lends to reason that sex should 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. 

 

Love in the time of brain injuries

BY: BRITTANY CRYDER

My story is not your usual love story.

photo credit: Rachel Marks via Flickr
photo credit: Rachel Marks via Flickr

 

 

Relationships are hard under any circumstances, but what if one partner suffers from a brain injury? Now, what if they both do?

Two years into my relationship with my partner, I suffered a minor traumatic brain injury after a day of snowboarding. For years afterwards I couldn’t keep up. I couldn’t bear loud noises, which discounted most bars and restaurants. I was tired all the time and struggled to keep up with conversations. Without work or sports I had little in my life to talk about or push for. I needed my partner to make me happy because nothing else did. I wasn’t the girl he fell in love with, and if I’m being honest, I wasn’t a girl I loved myself. We made it two years like this. He never stopped caring for me, but we didn’t know how to make it work. We just didn’t have the tools. Eventually, we broke up.

When we got back together, I was healthier, more independent, and hopeful about my chances for recovery. My boyfriend was doing well at work, and though loud noises still bothered me, I could go out to quieter restaurants or bring earplugs to ones that were a little more lively. I couldn’t be there for everything, but we had enough to share and to enjoy life together.

All that changed again after he fell off his bike and acquired a brain injury. Money got tight. He went through the same loss of identity as I had with no job or activities to discuss or share. I came to appreciate how hard things had been for him after my injury: This wasn’t the man, or the life, I had fallen in love with either.

photo via Youtube
photo credit: PipecleanerCraftsB via Youtube

We had an advantage, though. I was, and continue to be, grateful for everything he had been through with me in my early stages. On my more challenging days I would turn into the person he was six years ago for strength, if he could do it for me, I could for him. The loss of income was hard – he couldn’t take us out or treat us at home like he had – but I didn’t feel like I was holding him back any more, either.

In fact, I fell in love with him more. It is easy to be in love when life is fun. When all you have is a Netflix account and a couple cans of tuna? That’s when the little things count for everything. Every little touch as he passed me in the kitchen or every moment he stayed positive when he could have lashed out mattered all that much more. I developed new respect for him and counted myself as one of the lucky ones. We didn’t have much, but we loved each other enough to not let the stuff we didn’t have get in the way.

I told you it wasn’t your usual love story, but it is a love story nonetheless. The truth is, none of us are born with the inherent knowledge of how to make relationships work. We have to learn. In our case, we did. We learned how to communicate because there was so much we needed to talk about. We learned how to do little things to show affection when we couldn’t afford expensive gifts or nights out. We learned to read between the lines of an outburst and appreciate a smile or a stolen kiss for what it was: everything the other person had to give in that moment.

Photo credit
Photo credit: Peterlevithan.org

Every brain injury case is different and every relationship has its own challenges, but as a couple who has navigated this injury from both sides – both as caregivers and survivors, in a relationship that worked and one that didn’t – this is the Top Ten list of what we have learned. This list is worded for couples, but I believe any type of relationship could benefit from most of these lessons.

  1. Learn how to communicate: This doesn’t just mean saying what you feel as you feel it. It means learning how to clearly tell the other person what you need or what you’re concerned about and learning to hear what they are saying back to you.
  1. Give only what you can: Working on your relationship is important, but so is putting effort into yourself. The stronger you get, the more you will have to give.
  1. Be your best self today: Some days your best self is going to be taking on the world and some days it’s going to be changing out of your pyjamas. Making that small effort is not only going to help you keep pushing forward, but it will also be greatly appreciated by your partner.
  1. Appreciate the small things: Doing as many little things for your partner as you can during the day improves mood, and builds resiliency for when the big stuff hits. Likewise, appreciate them when you’re on the receiving end. If your partner sticks a cupcake wrapper to a pipe cleaner from the kids’ craft box instead of buying flowers because money is tight, take it for what it is – a way of saying, ‘I love you and we’re going to keep going.’
  1. Remember both roles are hard: Brain injury doesn’t just change the lives of the survivor, it changes the lives of everyone who loves the survivorl. That means being extra forgiving on the bad days, for both caregivers and survivors.
  1. Ask why – a lot. Ask yourself why when you find yourself getting mad at your partner. If the stress or pain is getting to you, it’s important to deal with the big picture problem of finding new coping strategies instead of waging a proxy war over who should take the garbage out is going to be much more beneficial in the end.
  1. Plan for the changes. Things are going to change, but it doesn’t mean everything has to stop. Keeping current abilities (or symptom triggers) in mind when making plans leads to far less stress and disappointment and allows you to do much more as a couple.
  1. Get used to being alone. All the planning in the world won’t change the fact that there will be some events that survivors just won’t be able to make it to. In these cases, partners – get used to going out solo. And survivors, let them go. Keeping them at home won’t make you feel better, but they may miss an opportunity to relieve some stress, which can lead to resentment over time. When you are feeling better you can always plan an event that you can both share to make up for it.
  1. Learn to be flexible.This one is hard for those of us who live on a schedule, but the affects of a brain injury can last for years, or even a lifetime. Instead of waiting to get back to the old you, try to change together. Find a new lifestyle that adapts to your abilities. If things go back to the way things were then that’s a bonus, but at least you didn’t lose all that time in between.
  1. Celebrate small victories: When everyday is a challenge, everyday has little battles which can be won. Celebrating small victories helps you focus on the positive and gives you an excuse to do something special together.

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. Siki sold Pinky some equipment for his business and he still attends karaoke the occasional Saturday afternoon at The Duke, where Sweet Daddy Siki continues to host.

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.

The Mighty Pen

BY: MARK KONING

I am a writer who happens to have a brain injury.

I am an ABI Survivor who is also a writer.

I am both.

Overall, I am a creative person, but my niche is writing. I love playing the role of storyteller and unravelling a tale of the imagination. I have written two fictional books and there are many short stories to my credit. I love the idea of creating different worlds or putting a spin on this one, coming up with characters and developing their depths.

A few years ago I decided to build my skills by taking a creative writing program, and while learning about building themes and expanding upon plots, my natural flair for scripting inventive narrative lead me to obtaining a diploma with honors.

My writing, so it seems, has also become somewhat inspirational to others, specifically my offerings toward brain injury advocacy. I was once convinced to start my own blog and in doing so it has guided me toward contributing to others (such as this one right here for BIST). The written word has also helped me in areas of my employment, both past and present, and it’s assisted in building a network of colleagues. But even more so, writing makes a significant impact on my life.

Through writing I not only get to share my experiences with brain injury, I get to learn, understand and become more aware. It teaches me as much as it might teach others. Writing about my viral brain infection when I was younger, scripting the story of the day my mom had her accident and suffered a head trauma, helped me get through the initial surrounding drama, and continues to allow me to see things a little more clearly. Writing also allows me to do something I find very difficul: communicate. I wouldn’t say that if it weren’t for writing I’d never talk, that wouldn’t be true, but I would be somewhat lost in life.

Screen Shot 2015-02-17 at 10.21.21 PM

 

Writing helps me deal with any depression I must face, as well as anxiety, frustration and even fear. It educates and motivates me on how stand up. I keep some of my writing to myself, some I share, some I write in story format (as I remember it) other stuff I scribble out in point form – in email, opinions, advice, in my journal, in a blog, in an article or a book.

Whether it is a pen in my hand, or more often a keyboard for my fingers, I have gained confidence and also found an outlet for my sanity. The mighty pen, for me, is a saving grace. It is my substitute for any needed medication or rehabilitation.