Coming back to BIST’s peer support program

BY: MARK KONING

I recently went through a re-training session to once again become a mentor in BIST’s peer support program. It felt good, returning to a cause that is both helpful and important.

After a two-year stint as a peer mentor, I needed a break. Now, a year and a half later, I am stepping up to the plate again and returning to the program. It feels like the right thing to do,  I have things to offer from my experiences both as a survivor, and as a caregiver of a brain injury survivor. The partners I was matched with in the past were pretty awesome and I think things worked out beautifully.

So why did I leave? Why turn away from something I enjoyed and I knew was making a difference? Because I needed to take action for myself.

We often think of ‘taking action‘ as doing something to benefit others or society as a whole. But I think we often forget to take care of our physical and mental health.

I know this is a difficult thing for me to do. As a survivor, the ABI I carry around like a shadow often makes me forget about self care. At the same time, I am fairly certain it is also my brain injury and experiences from it that have given me this type of feeling of social responsibility. This social responsibility is something I have heard other survivors experience as well. It is probably why most mentors are survivors.

Experience has taught me a lot, and I continue to grow and understand as I move forward. I cannot be afraid to take action and step back, especially when I am doing something such as mentoring, which affects others.

The BIST peer support program is a great thing to be involved in, but I think taking a leave (from anything really) can benefit ourselves and whatever it is we are doing. In this case, I think it can only make the program stronger in the long run if partnerships remain successful.

‘Taking action’, both inwardly and outwardly, is something that always needs to be considered. Because even if at first glance it may seem as though we’re moving backward,  if we are really cognizant of what we are doing, we are always moving forward.

Do you feel like it’s the right time for YOU to become a peer mentor?
We have a training happening this spring – ABI survivors and family members welcome!

For more information, contact our programs and services coordinator, Kat Powell at: connections@bist.ca or 647-990-1485.

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Mark’s passion to lend a helping hand, offer advice and give back has developed into a moral and social responsibility with the goal of sharing, inspiring and growing – for others as well as himself. His experience as a survivor, caregiver, mentor and writer has led to his credibility as an ABI Advocate and author of his life’s story, Challenging Barriers & Walking the Path. Follow him on Twitter @Mark_Koning or go to www.markkoning.com

 

Advocating the basics of the brain

BY: MARK KONING

There are few things greater than being referred to as a hero.

Don’t get the wrong idea, I do not advocate for brain injury for that purpose. I do not talk about what I have gone through, and still go through, as a Survivor of ABI (acquired brain injury) for fame and applause, though they are nice to hear. They are especially nice to hear because brain injuries are usually invisble, seldomly understood and rarely acknowledged. Survivors’ struggles are mostly overlooked and/or given little sympathy.

I talk about brain injury to bring about awareness, to help others with ABI know that they are not alone, and to get things off my chest. I wear my heart on my sleeve and I want nothing but to help others and the cause in general. But the hero thing, yeah, it sounds and feels good.

photo credit: Angelina 🙂 via photopin cc

So where do I hear these awesome ‘hero’ words? The Ontario Brain Injury Association (OBIA) offers a Brain Basics course that I participate in every so often. The ones I have been involved with have been put together with the help of the Brain Injury Society of Toronto (BIST).

Brain Basics is designed to provide health care workers, caregivers and others with an introduction to the world of brain injury. The goal of this two-day workshop is to help participants understand the structure and function of the brain, to appreciate the consequences of an ABI and to gain some strategies to work effectively with people living with this injury.

However, the brain is complex, and so too is a brain injury. Almost every brain injury will impact a Survivor in different ways. So this is where I come in, usually along with four or five other Survivors, and maybe family members.

We all sit on a panel and are asked various questions about living with an ABI. These questions range from the date and type of the injury, to the hardship and personal impact which have resulted from it.

The facilitator is very gentle with the questions and there is no pressure to answer, because after all, real life experiences can be difficult and emotional. And not just for panel members, for our audience as well. I have seen quite a few eyes tear up after hearing our stories.

photo credit: labguest via photopin cc

When the facilitator is done with the Q&A (and we are asked to keep our answers to a minimum so we don’t go on and on, which we probably could) participants have the opporunity to ask us questions. The purpose of this part of the program is for the panel members, conducted by the facilitator, to tell and share stories that the modules don’t teach.

The only real cure for brain injury is for everyone to develop a basic understanding and then work together to create awareness and inclusion. That’s what this program and advocating for brain injury is all about.

According to OBIA, more than 2400 people have taken the program. Those who successfully complete the examination are awarded a certificate from OBIA.

Brain Basics Training

Contact OBIA at: 1-855-642-8877  or

 ddakiv@obia.on.ca

BIST’s 10th anniversary party!

Photos and words by: G. IAN BOWLES 

July 28th was the celebration of BIST’s 10th anniversary, marking 10 years of activity, growth and helping those who have survived brain injuries.

Often there are specific themes to the BIST community meetings, such as answering questions people have asked, addressing concerns or encouraging proactive communication. So those who attend are treated to some education as well as some fun. Not that the 28th was not like that, but the theme was entirely one of celebration. A band (Cougar Bait) was brought in, there was karaoke and dancing, and dinner was provided.

The cake was particularly special, made up of cupcakes with a single layer of frosting between them all.

Many of us reconnected with friends we had not seen for a long time, we also met new acquaintances.

Several speakers gave their memories of the last ten years, from humble beginnings through a time without any organization that brain injury survivors could call their own. Since then we’ve grown to where we have our own office and staff, dozens of meetings through the year, have received grants and are actively fundraising. We’ve come quite far, and the event was a great recognition of the effort that’s been made.

 

Find more pictures of BIST’s 10th anniversary celebration here

 

Internet Safety and Security: Protecting Your Time Online

By G. Ian Bowles

Often we forget that some of the Internet’s most powerful benefits are also its biggest dangers. Information is available everywhere, good and bad, and we are all anonymous in an online context. Unfortunately, there are many people who will use that to their advantage by trying to trick us into revealing private information. The Internet is a fully shared experience, and we must think about consequences before we add to what is “out there.” Anything we leave, anything we write or “say,” cannot be taken back.

But we can’t just unplug our mobile devices and disconnect our Internet service. So to help educate Brain Injury Society of Toronto (BIST) members about Internet Security and Safety, IT and Web Consultant Matthew Kleinosky presented an overview of the topic during January’s BIST community meeting.

Kleinosky’s style was quite effective: most of us use the Internet, and I think all of us left this session with a reminder that although online activities should be fun and productive, our time needs to be protected as well. The presentation was fun and light, but pulled no punches when giving recommendations on being safe.

Kleinosky mentioned a few of the primary risks. One is your “online legacy”: people will be able to see, 10 years from now, simple comments you make on websites today. Future employers and co-workers and friends will see those comments as though they were just made, and you won’t be able to explain the context. There are many more malicious dangers as well: identity theft, cyber-bullying, predators and scams. Bullying is an important topic because it can easily affect how you perceive your time online, and result in physical or emotional hurt. Remember: bullying is a crime, and can be reported at  Cybertip!ca

Kleinosky made several suggestions to avoid Internet pitfalls, and they all involve a certain amount of vigilance and constant observation. Much of it is being careful, but people can try to trick you into letting your guard down.

A few tricks to be on alert for:
♣    Beware of emails from people you don’t know, and always confirm what you read.
♣    Be careful about links provided in an email.
♣    Develop good password habits and never give those passwords to anyone.
♣    If you’re dealing with anything related to money or paying for a purchase, make sure you’re on a secure site. One way to check for this is to see if the URL has https:// at the beginning. (The “s” is key.)
♣    Although the Internet can be dangerous, there are also tools that help to protect us from that danger. One is Lastpass.com. Note that the https:// appears when you first go to the site; this is a tool to help to remember and use passwords.
♣    Kleinosky also suggested Snopes.com and Hoax-Slayer as sites that can be used to check out rumours or stories you hear online.

The presentation was well received and seemed popular. Hopefully, we can avoid the kinds of dangers that Kleinosky explored. Although the Internet should be a place that we can explore safely and with confidence, we need to guard our presence when we’re “out there”.

G. Ian Bowles, brain injury survivor and BIST Communications Committee Chair

Reintegration into the workplace after a brain injury

Cake for everyone at BIST’s Annual General Meeting

A successful Brain Injury Awareness Month has come and gone, with our BIST/OBIA Mix & Mingle, our Brainstock event and our Annual General Meeting wrapped up for another year. In July, BIST’s blog will be taking a run at summer safety advice. But first we’d like to share another insightful article about returning to work after a brain injury.

By Melissa Myers

After an accident, the most difficult thing is assessing how many of the activities you enjoyed before your injury are still a possibility.

One of these activities is work, and people are often eager to return to the routine and independence a work-day can offer. But before diving back into the responsibilities of a job and pursuing the challenges that necessarily lay ahead, it is important to remember to take it slow. A lot of the time people can’t return to the job they had before their accident, but sometimes there is an option to work with a previous employer and return with a reduced work load.

Photo courtesy FreeDigitalPhotos.net

We spoke with a career centre and a vocational job placement specialist to see what they recommended to keep in mind at each stage of the game:

Dale Smith, a vocational job placement specialist for over twenty years, specializes in helping people with a brain injury in preparing for and returning to work.

“One thing almost everyone talks about is the fatigue — both physical and mental,” said Smith.

In an e-mail interview, he told BIST that there are several factors to consider before returning to work and that the most important question you should ask yourself is “why are you considering work at this stage of your recovery?”

Smith mentioned that a mix of physical, cognitive and financial factors should be taken into consideration. Assessing how that group of factors affects your daily life will help with your decision about returning to work.

Smith said that the key thing to remember when pursuing a return to the workforce is “awareness of both your capacities and limitations.”

“It is very important to understand how and where these can affect you on the job, in the workplace or dealing with others (customers, coworkers),” he said.

Brain Injury Awareness Month

Welcome to Brain Injury Awareness month here at Toronto Brain Injury Blog.

This month we’ll be sharing highlights from two of our events – The Brain Injury Society of Toronto (BIST)/Ontario Brain Injury Association (OBIA) Mix & Mingle on June 14th and our Brainstock event June 20th.

We have plenty to look forward to at both events. The Mix & Mingle at the Steam Whistle Brewery downtown is a chance to celebrate the members who work alongside BIST, while raising awareness about acquired brain injury as well as funds to support our ongoing services and programs.

At Brainstock, our annual Brain Injury Awareness Month event, ETalk host and BIST 5K run participant Ben Mulroney will be the special guest at Nathan Phillips Square, where we’ll also have live music and performers.

These are all part of our efforts to raise awareness about the ‘invisible disability’ that is acquired brain injury. Nearly half-a-million Ontarians are living with the effects of ABI but it is not always obvious who they are.

Imants Leitis, the founder of BrainInjuryForum, will address this issue in his piece for the blog this month. Follow us on Twitter, Like us on Facebook or subscribe to the blog to stay up-to-date on these articles and more.

Matthew Chung
BIST member and Blog editor

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.

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