How I handle the holidays as an ABI survivor

BY: MARK KONING  

Isn’t that how the song goes? “It’s the most wonderful time of the year.” But for some I think you could easily substitute wonderful with stressful or depressing.

pile of presents
photo credit: Rev. Xanatos Satanicos Bombasticos (ClintJCL) via photopin cc

The days surrounding Christmas can be both joyful and stressful for many individuals who are out there listening to festive songs while fighting through the crowds at the mall. But when you factor in a brain injury things can become much more intense. I speak from experience as an ABI survivor when I say that the financial pressures we face, the family situations that come up, the social functions we’re expected to attend, and just the pace of the season can be a bit much.

I consider myself blessed because I have a pretty good family foundation and support system which keeps me staying positive, and doesn’t expect a lot from me. I help my mom with all of the decorations around the house. I write both as a therapy tool and to share with others. I have a social worker I can to talk to, and I’ve put in a lot of effort into trying to remain a positive person.

All of these things help me stay connected to others. I’ve learned the effort it takes to maintain these connections is easier than living with the challenges of being isolated. And I use the word effort because that is what it is, regardless of how much I do, it is an effort. It is an effort when others cannot understand what I live with. But for me, I really don’t see (or even understand) the alternative.

The opposite of effort is “hesitation, idleness, inactivity, laziness, or passivity” and then there is just plain old giving up, and none of these things are me.

The Christmas season can be a hard one to get through, no doubt, but don’t be afraid to speak up, look those difficulties in the face and push back. Be active, ask for some help. You never know what you may find. No one should be made to feel that they are alone.

Try to remember the real meaning, the value, of Christmas. A brain injury survivor may have to work a little harder for that smile to emerge on his or her lips, (or perhaps just in the heart is good enough) but it can go a long way. Things can get hard at times, but I keep reminding myself that this brain injury of mine does not dictate my happiness.

‘Survival is doable’ – holiday tips for ABI survivors

BY: SHIREEN JEEJEEBHOY

When your doctor has a SAD lamp on his desk, you know Canadian winters are grey and dreary. Add in the holiday season when we are all supposed to be festive but in reality are acutely aware that family and friends who surrounded us pre-injury are no longer around or are unrealistically demanding, you have a recipe for a bummer of a Christmas.

doll house figures celebrating christmas
photo credit: - Annetta - via photopin cc

How can we survive this? And not only survive, but maybe even thrive? I’m thinking the latter might be too ambitious a goal for some of us. But survival is doable. Our December Twitter #ABIchat was on this topic (if you’re not familiar with #ABIchat, head on over to my web page:  http://jeejeebhoy.ca/abichat/).

One of the things I found heartening from the #ABIchat is knowing that I’m not alone. Knowing you’re not alone is step one to lifting the weight of this season off our hearts. Knowing many other brain injury survivors find the noise, the numerous activities, the demands of others to be who we were pre-injury overwhelming, is comforting. Knowing that others are also lonely as friends and/or family melted away over the years following the brain injury, makes us feel less of a freak, and less rejected. Knowing that others need to rest up days before and days after parties and the big day, makes resting sound normal. It’s easier to tell those in our lives who resent us resting, ‘Yeah, I need to rest, deal with it, I’m going to go nap now.’

But survival is more than just knowing others are in the same boat as us, we also need to know what to do.

Pacing is key. To pace wisely, we need to plan our holiday activities wisely. Which activities drain you the most? List out your activities, putting the most draining ones at the top. Depending on your standard fatigue level, cut the most draining activities out altogether or down to one. Let’s say, parties exhaust you the most. You could cut your parties down to one or none. If one, decide which one you enjoy the most, and go to that one. Don’t go to the one you feel obligated to go to or would make someone else happy. Choose the one you will have the most fun at, see the people you enjoy the most.

Christmas lights on dollhouse
photo credit: tommaync via photopin cc

After you pare down your activities to the most essential, maybe cut that list in half, then go through your resulting list and figure out how much rest each activity requires. Put into your schedule the rest days before, the recovery days after, and the activities themselves. It’ll quickly become evident if you’ve scheduled too much in, and you may need to cut down the list even more.

Try not to double up rest and recovery days, meaning don’t have the two days of recovery after Party A also be the two days of rest up before Party B. And remember to schedule one or two days in between to be just for you and to do something you enjoy. That’s ideal of course because from Hanukkah to Christmas preparations through to New Year’s is rather a compressed timeline

If you don’t have someone to spend Christmas with, see if you can get together with a few friends between now and January 5 as an antidote to the aloneness of the day itself. But again, space them out so you don’t become exhausted. Exhaustion makes everything worse.

Another important thing I learnt from the #ABIchat is to be honest. Put your health first, be honest about what you can handle. If parties really overwhelm you, be honest and say I can no longer attend parties. Suggest an alternative, like, perhaps a coffee out between Boxing Day and New Year’s with a couple of people you wanted to connect up with at the party. With honesty comes acceptance of your situation as it is now. One person said Christmas was going to be feet up and films. She was good with that. Maybe that’s not what you and I want, but perhaps that’s the reality.

If your emotions work, have a good crying session before putting your feet up, popping the popcorn, and watching the movies you’ve wanted to see in the theatres but never could because of the crowds and sensory overload. Or maybe you don’t like movies. Maybe you want to listen to music or walk in a ravine. Whatever is a treat for you, do it. Go overboard, totally treat it up!

Lastly, remember this season will end. And then we’ll be back to our familiar routines, and these dreary days will be behind us with longer days of sunlight ahead.

Will Tracy Morgan’s brain injury lead to more TBI awareness?

Comedian Tracy Morgan performing on stage
COMEDIAN TRACY MORGAN; photo credit: Mild Mannered Photographer via photopin cc

BY: MARK KONING

Regardless of public figures, such as Tracy Morgan, sustaining a brain injury from a car accident this past June, awareness (in my opinion) has not shone on this life threatening and/or life changing disability enough. I recall back in 2009 when film actress Natasha Richardson had a ski accident where she fell. She complained of a headache and a banged up forehead but refused medical attention, thinking it was not serious. Paramedics on the scene obliged her wishes. She eventually died of a traumatic brain injury.

At the time the news that came out of this story said that things must change, that we must become more aware. What happened? Is Tracy Morgan’s current situation now going to bring about the brain injury awareness that was meant to happen then? I guess only time will tell how much relevance is put onto this injury that affects so many more lives than just the one who sustains it.

Natasha Richardson
ACTRESS NATASHA RICHARDSON; photo credit: fanpop.com

As a brain injury survivor (from a viral infection) and a caregiver to my mom who lives with her own ABI, (sustained from a fall) I can tell you that I have seen awareness grow within the medical community as well as acceptance from individuals and family members affected by brain injury; but awareness (true awareness) should go beyond that. It needs to.

I do believe that these ‘a’ words: awareness and acceptance, are gaining momentum in the form of advocacy through forums, social media, print media, etc. But I do not think the impact is making any sort of wave to society as a whole. Richardson’s tragedy did not open as many eyes as hoped, but maybe Morgan’s will. Ongoing education on a large and public platform might be the answer, because I don’t think celebrity status alone will do it alone.

Accidental tragedy cannot really be prevented, I mean, it is an accident; but having brain injury properly recognized and understood can help needless suffering. The spotlight has to change.

For more coverage of Tracy Morgan’s brain injury:

Daily Mail, Dec 3, 2014  - Heartbreaking video shows a weak Tracy Morgan limping 

Toronto Star, Nov. 19, 2014 – Tracy Morgan battling severe brain injury

People Magazine, Oct. 1, 2014 – Attorney for Injured Tracy Morgan Says It’s Unclear if He’ll Ever Perform Again

PageSix, Sept. 30, 2014,  Tracy Morgan may never perform again 

What do you think? If you’d like to write a blog post about how Morgan’s story – and how brain injury in general – is portrayed in the media email us – info@bist.ca!

7 Tips to help you beat the winter blues

BY: CELIA MISSIOS 

Winter may still be a few weeks away but many of us are already feeling the effect shorter exposure to daylight and the affect dipping temperatures have on our mood and desire to step outside our homes.

For some people “winter blues” are a minor inconvenience and they manage to make it through the cold days of winter without too much disruption in their daily life. For others this time of year can become a debilitating nightmare known as SAD (Seasonal Affective Disorder) affecting people in varying degrees. Though there doesn’t seem to be any studies indicating that persons with ABI are more susceptive to SAD, I started noticing after my accident something was happening and affecting me as soon as the cold, dark days of winter began to approach.

kicking the winter blues
Photo credit: HIGH HEELED LIFE

Once the time changed my downward spiral would start – gaining momentum and reaching a dangerous peak by mid-winter. Speaking with other ABI survivors I learned that this was a common occurrence for many of them around this time of year, which like me, had not been present in their pre-accident life. If as the weather changes you find that you are experiencing (or notice increase in) the following:

  • Withdrawing from being around people (an overwhelming feeling to hibernate).
  • Increase in anxiety and thoughts start to have a negative undertone.
  • Energy levels deplete with just thinking  about doing something.
  • Being uninterested in most activities that were fun and enjoyed.
  • Everything starts to bother you

I highly suggest speaking to your family doctor, therapist or other medical professional who will be able to guide you to getting the appropriate care.

woman looking depressedon sofa
Photo Credit: Google Image

 

 

 

 

 

 

 

Having fought a great fight to live and get my life back I was not about to have a few months each year continue to be taken away from me, any more than they already had. I came up with a plan to help get me through my winter blues.

Celia’s seven tips on how to ease the intensity of weather change:

  • A spa outing (alone or with friends) – a massage, energy healing treatment can be most beneficial to mind, body, spirit.
  • Taking my two Yorkies – Dolce and Gabbana for morning and mid-day walk. A little exercise helps lower depression and improves your mood.
  • When I feel signals popping up, I refrain from a glass of wine with dinner or any other time for that matter. Alcohol can increase depression.
  • Take a technical break – from the Internet, blogging or other social media and get outside. As much as technology connects us it can also make us feel further isolated as we see all the photos, tweets of others having fun. Bundle up and go outside even for just 5-10 minutes.
  • Make plans to meet friend(s) for dinner, a stroll in the city – face to face interaction with others is priceless medicine.
  • Plan an escape to a warm climate location – even if for only a 3/4 day weekend.
  • Pay extra attention to eating healthy and drinking plenty of water. I also take a Vitamin D supplement; eat foods high in Omega 3s (salmon, nuts like walnuts, chia and hemp seeds, and spinach) both Vitamin D and Omega 3s have been linked to huge increases in immunity as well as lowered depressive symptoms.

If the cold, gloomy dark days of winter have you buried under your blankets, wishing you could stay there until April, I invite you to check out the segment Tackling Seasonal Affective Disorder on Huff Post Live, which I had the honour of being a guest on, last year.

Celia Missios
Celia Missios

Celia Missios is a brain injury survivor who has embraced her new found strengths and created a life that fits who she is today. She shares her journey in hopes that it will help others who are experiencing depression, anxiety, stress and facing transition in their life successfully move away from fear, pain, and deflated attitude about life – step into the life they want. Celia is the founder of the blog High Heeled Life – inspiration for living a luxurious and balanced life; featured author in Adventures in Manifesting – Soulful Relationships; a Peer Mentor with BIST; and a regular speaker for Canadian Blood Services – Speakers Bureau. Learn more about Celia and be inspired visit www.HighHeeledLife.com or www.CeliaMLifeCoach.com.

 

Community Meeting Round-Up – Safe Inclusive Toronto Streets

BIST members had the opportunity to hear Melanie Moore from the Centre for Independent Living in Toronto speak at our November community meeting. Moore talked about Safe Inclusive Toronto Streets - the idea that Toronto’s streets should be safe for everyone who lives here, whether they have a disability or not.

“Safety means different things to different people,” Moore told us. She asked members to describe what safety means to them:

  • Being aware of what’s around us – people and things
  • Making a clear path
  • Preventing accidents, i.e. riding a bike with a helmet
  • Locking doors
  • Carrying money in a safe place
  • Have a good attitude in public
BIST's Kat Powell and CILT's Melanie Moore
BIST’s Kat Powell and Melanie Moore of CILT

Melanie showed us a self-defence video taught by Savoy Howe of Toronto News Girls – a boxing club for women and trans people which focuses on empowerment and “exploring the art of boxing”. In the video, Howe showed people with disabilities –  the majority of whom were in wheelchairs – how to throw traditional boxing punches versus “street fighting” punches.

Moore emphasized, as did Howe in the video, that self-defense is just one part of safety training. Using your voice effectively can stop a potentially dangerous situation from escalating, for example.

Here are other tips from Moore:

  • If you’re in trouble, yell “fire.” People are much more likely to respond to “fire” than “help” or anything else you can yell.
  • Get a case for your cards which lets you use them without taking them out of the case – they’re not expensive and means you don’t have to expose all of your cards.
  • The City of Toronto says people with disabilities and seniors can have their sidewalks cleared of snow for free this winter. You need to register in advance.

Next meeting: BIST Holiday Party!
Dec. 15, 6-8 p.m., Northern District Libary
40 Orchard View Blvd, 2nd Floor meeting room

BIST remembers: Paula Cassin

Paula Cassin
Paula Cassin

Like many in the ABI community, BIST was very saddened to learn of the recent passing of Paula Cassin, our former board member and tiresless brain injury survivor advocate.

We are honoured to share the heartfelt tribute to Paula  by Judy Moir, given at The Toronto ABI Network Conference last week.

When Charissa and Colleen asked me to do this my first thought was, I would be honored to stand up and give tribute to a woman that I respected and admired as a colleague and a woman who I came to think of as a friend. Paula was one of the most genuine, giving and selfless people I have ever met.

My second thought was – how will I possibly get through it? So please bear with me.  It has only been a few days since we lost Paula and although many of us knew it was coming, we are still reeling a little from the suddenness and the seeming injustice.

I trust that you will understand if I need to a moment or two now and then.

I don’t want to simply outline a list of accomplishments today – although there were many – rather I am hoping to give you a sense of the person Paula was.

And I am so grateful that I am not doing this alone. Many of you have shared thoughts and stories over the last few days and I cannot think of a better tribute than sharing with you the collective memories of the ABI community – the community that Paula was so passionate about and worked so tirelessly for.

So these words are not all my words – they are the words and memories of those who worked with her and knew her. She is remembered for her valuable contributions by the whole community –  her team (at abiPossibilities and then at Pace), the people who worked with her in the past and more recently, the ABI Network, OBIA and BIST.  And most importantly the clients she worked for (or members, as she called them).

Paula has been described as a truly genuine and generous person with a giving heart. There were no airs or pretensions she simply and genuinely cared. Everyone who met her was touched by her and it didn’t take long for her to get into your heart.

She showed genuine respect and empathy for clients as well as colleagues, had a remarkable ability to be inclusive and welcoming, and wanted to give whatever she could whenever she could.

She always put the members at the centre of every decision, every structure, every policy, and every action. Apparently she drove people a wee bit crazy with her ‘most excellent questions’, challenging what we are doing, why we are doing it and how we can do better.

She truly felt it was our privilege and responsibility to provide the kind of support that people wanted to create a life they wanted.

Even in these last few difficult months she was concerned about others – she had this incredible way of ensuring everyone else was doing okay. On more than one occasion she called to share some bad news following a doctor’s appointment or a test result and then would call back to see if I was ok.

And she worried about how the plans for her treatment would impact her family and friends more than she worried about what she might need or want.

She was thought of by many as a mentor and someone with a passion for lifelong learning – most often she sought out learning for the sheer love of it – sometimes it was more out of necessity (I am pretty sure she learned more about bed bugs and the LHIN’s budgeting and reporting requirements than she ever wanted to).

Many people remember Paula as a strong but gentle advocate and a dedicated and hard working professional. That was evident in everything she did – right up to the very end. She went into the office last Monday – the day before she was admitted to Palliative Care. And even from her palliative care bed she was making calls and planning for her clients and her team.

Paula was a rare one and I don’t think there will ever be another quite like her. She has changed the ABI community in Toronto for the better and we are less today because she is gone.

For those of you who have attended the Toronto ABI Network conference in the past you know there is always something to inspire you or remind you why we do the work that we do.

I hope today you will remember Paula and let her legacy of selfless, gentle advocacy remind you of what is important and inspire you to change your part of the world.

Canadian veterans: dealing with ABI and PTSD

Soldier in combat
photo credit: C. Maxwell Horn via photopin cc

BY: RICHARD HASKELL

Travelling to a foreign country to engage in combat. Witnessing injuries, death and destruction on a regular basis. Forced to endure tough living conditions. Is it any wonder members of the Canadian armed forces who see action return home not only with physical, but with mental and emotional trauma as well?

Broken bones and musculoskeletal injuries can be healed. More challenging however, are the emotional afflictions men and women in the armed services can suffer, and surely among the most devastating is Post-Traumatic Stress Disorder (PTSD).

soldiers on the field - looking sad
photo credit: 4 Cdn Div/4 Div CA – JTFC/FOIC via photopin cc

PTSD has been much in the news over the last few years, which could give the mistaken impression that it is a new condition.

In fact, PTSD has been around for a very long time, but under different names. Among these were “shell shock” or “battle fatigue.” I remember my mother telling me about a great-uncle of a friend of hers, explaining that he had seen action in WWII and was ‘never the same again’. “He was shell-shocked and couldn’t do much after the war was over,” she used to tell me, shaking her head. While the name has become more clinical, the symptoms remain the same., PTSD is defined as:

A debilitating psychological condition triggered by a major traumatic event, such as rape, war, a terrorist act, death of a loved one, a natural disaster, or a catastrophic accident. It is marked by upsetting memories or thoughts of the ordeal,”blunting” of emotions,increased arousal, and sometimes severe personality changes”.

2 army women doing deep breathing exercises
photo credit: MilitaryHealth via photopin cc

Symptoms

Most people have been involved in a frightening situation at some point in their lives, and reactions vary from person to person. Some might feel nervous at times, while others might have a difficult time sleeping as they go over the details of the incident in their minds. Over time, symptoms usually decrease, and sufferers affected eventually return to their normal lives.

However, in the case of PTSD, the effects last a considerably longer time and can seriously disrupt a person’s life.

Doctors refer to three symptoms that define PTSD: intrusion, avoidance and hyperarousal. Intrusion is the inability to keep memories of the event that sparked it from returning. Avoidance refers to the attempt to avoid anything that may trigger those memories, and hyperarousal is the constant feeling that danger or disaster is imminent. These may also be accompanied by an inability to concentrate, extreme irritability or sometimes violent behaviour.

Those affected can experience recurring nightmares, flashbacks or recollections of the event or incident. They can feel “on edge” all the time, have difficulty in concentrating, be irritable and have problems sleeping . A common symptom among veterans is something known as nocturnal myoclonus, a sudden spasm of the whole body while sleeping or drifting off into sleep. It lasts for about a fraction of a second, but may occur several times in a single night. Often people with PTSD will sleep through such a spasm, but it can be extremely disturbing to their partner.

People suffering from PTSD may also feel disconnected from their thoughts and have a hard time expressing emotions. It can lead to depression, substance abuse and create problems in a person’s personal life. Suicide is often seen as the only way out.

Not surprisingly, those in certain occupations, such as policing, firefighting and the military have much higher rates of PTSD than those in other professions. And in some cases, trauma such as warfare can cause symptoms even beyond those commonly associated with PTSD, resulting in a state known as “complex PTSD.”

members of the military doing yoga
photo credit: MilitaryHealth via photopin cc

Brain Injury and PTSD

A study released by the University of Southern California, Los Angeles, in February 2012, reported of a possible correlation between acquired brain injuries and PTSD, suggesting that people who suffer even a mild brain injury are more likely to develop an anxiety disorder.

UCLA professor of psychology Michael Fanselow found that this relationship was particularly prevalent among veterans who had returned from overseas. The reasons for the connection are not yet fully clear. Nevertheless, in an experiment with rats, scientists used procedures to separate physical and emotional trauma, training the rats by using “fear conditioning” techniques two days after they had experienced a concussive brain trauma, thereby demonstrating that the brain injury and the experience of fear had occurred on two separate days. As Dr. Fanselow explained:

We found that the rats with the earlier TBI acquired more fear than control rats (without TBI). Something about the brain injury rendered them more susceptible to acquiring an inappropriately strong fear. It was as if the injury primed the brain for learning to be afraid.

Canadian Armed Forces in front of the Parliament Buildings
photo credit: Jamie In Bytown via photopin cc

Standard Treatments

According to Boston’s Mayo Clinic, the primary treatment of PTSD is psychotherapy but this is also frequently combined with medication. Psychotherapy can include any of the following types:

  • Cognitive therapy. This type helps patients recognize the ways of thinking (cognitive patterns) that are hindering the healing process.
  • Exposure therapy. This type helps patients safely face what is causing them such distress so they are able to cope with it more effectively.
  • Eye movement desensitization and reprocessing (EMDR). EMDR combines exposure therapy with a series of guided eye movements that helps patients react better to traumatic memories.

New Treatment

The Canadian military has come under criticism for its seeming neglect in both the recognition and treatment of PTSD ex-soldiers are still feeling the effects of combat. Last November, three veterans took their own lives over the course of a week, bringing the total to more than 22 since the mission in Afghanistan ended.

Nevertheless, a story from CTV News in March of 2014 reported a new treatment being tested that so far, is producing positive results. Developed by the Institute for Creative Technologies at the University of Southern California, it involves the notion of virtual reality in which a sufferer affixes a device to his or her head which simulates the circumstances that brought about the trauma in the first place. The therapist can then talk the patient through the ordeal, thus helping them to overcome it.

The federal government is now in discussion with ICT in order to develop a Canadian version.  The ultimate goal is not just to treat afflictions such as PTSD but to also train soldiers before going into battle, helping them to experience the sense of combat before they embark on the real thing.

PTSD can be both debilitating and life-threatening, but there is hope. If you know someone you suspect is suffering from PTSD urge them to seek help.

Those afflicted may find it difficult, for stigmas surrounding mental health issues continue to persist. Yet seeking help is the first step to recovery and it is readily available through such organizations as Canadian Mental Health. Suicide is most definitely not the solution. Those who have served in the Canadian armed forces have served their country well, and deserve whatever we can give them to continue leading happy and successful lives.

PTSD AWARENESS

Resources

If you think you or someone you know has PTSD or needs other mental health supports: