What we don’t like to think about, but need to prepare for

Do you ever think, what would you do if your spouse was in a serious accident?

20170304_200345
Theresa and Norm McColl at Theresa’s college graduation.

Who pays the bills? How are they paid? Do you have access to your spouse’s bank account?

And the big question: do you have a will and power of attorney (POA)? Do you know where they are?

If you answered ‘yes’ to these questions, I applaud you. You are prepared.

Regardless of our age, many of us think we’re too young to worry about the practical details of what would happen if we or our spouse were suddenly seriously injured or deceased. These are difficult topics to talk about, and we are like to think ‘it’ll never happen to me’. That’s what my husband, Norm, and I thought.

One day, we drove past a place that did wills and power of attorneys. Norm said, “We don’t need a will and power of attorney.”

But something in me felt differently, and I insisted we get them done.

I am so glad we did. A little while later, on Thursday, April 28, 2011 things changed for us forever when Norm was in a very serious car accident.

20170304_195518
This photo collage represents Norm’s passions before his injury. From top (R-L) logos from Guelph Storm Hockey, Kinsmen Club, Guelph Fire Department and Guelph Radio Station.

The pickup truck he was driving was T-Boned and ended up underneath a tracker trailer.

Norm was only able to mumble his name and where he worked before he lost consciousness. He was air lifted to Sunnybrook Hospital from where we live in Guelph. He had several broken bones, and we were soon to learn, a traumatic brain injury.

Until then, Norm lead a busy life. He worked at the firehall and had a radio show. He was, and continues to be, a Kinsmen.

Norm’s injury changed my world in countless ways, including the practical ones. Until then, he had been the bill payer and, in large part, the provider. In an instant, those duties became mine. I had no idea what to do, and I needed to find our POA.

All of our bank accounts and bills were under Norm’s name, and I needed the POA to gain access to them. Without the POA, who knows how long it would have taken before I could start to live and pay bills.

I am very grateful Norm listened to me that day when we were out for a drive. I am glad that our wills and POA were in effect. If we had just said, “Oh, that’s just for old people,” and drove by, I would have been in a heck of a mess.

After hearing my story,  what are you waiting for? Are you prepared?

Please don’t wait, tomorrow, may be too late.


After her husband’s injury, Theresa went back to school to become a Personal Support Worker. She has taken courses in brain injury, and is now a full time caregiver. You can follow her on Instagram, HERE
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Fatigue and the heat wave

BY: MARK KONING

There is a saying, ‘no two brain injuries are alike.’

This is true, every acquired brain injury is indeed different. But these horrid ABIs share some commonalities, and one in particular is fatigue.

people walking on a busy sidewalk in the summer
photo credit: Holographic Circus Wume / Aural States via photopin (license)

Similar to brain injury, fatigue is invisible. I find it to be hiding in the corners of my brain, lurking in the shadows. It seems to be ready to jump into action at any given time of the day. A nap, or extra rest, does not cure it.

Fatigue:

extreme drowsiness, typically resulting from mental or physical exertion or illness.

I’m not sure if people understand the effect fatigue has on someone living with a brain injury. I find it comes in waves and at various levels of low, mild and extreme.

It is a silent paralyzer, and never a pleasant experience. It is disorienting. One could almost wonder how much worse it possibly get?

Remember last summer? 2016 was the hottest year on record. This summer we have some relief, but the heat and humidity persist on most days, and they are a lethal instigator of fatigue.

Close up of an outdoor thermometer reading 100 degrees
photo credit: jo3design [DSP] May 18: Heat Wave via photopin (license)
While I’m not sure what is the best way to beat this devastating duo of fatigue and the heat wave, I know there must be a way to deal with it.

Perhaps it is inner strength, or knowing how to slow yourself down and breathe. Maybe the answer is to go for a nice cool swim or take a cold shower. Regardless of how staggering it can get, like with many things, I will get through it and survive.

I’m sure any of us who come up against these monsters can do the same. (And remember, fall is just around the corner.)

But sometimes I wonder, which is harder? Dealing with the fatigue or dealing with the fact that others don’t understand why I’m dealing with the fatigue. Maybe it is me not always telling people that I’m trying to deal with the fatigue.

Wow, that’s confusing, but that is also brain injury.

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

Come with BIST to see Brain Storm: a Toronto Fringe play about brain injury, a psychic medium and Dr. Wilder Penfield

BY: MERI PERRA

If you’re of a certain age and lived in Canada, you likely remember this classic Heritage Minute featuring neurosurgeon Dr. Wilder Penfield:

Taliesin McEnaney remembers the commercial well. A theatre professional with over 16 years acting, writing, producing and directing experience, McEnaney’s family tree includes a spirit channeling grandmother, Claire Ward. One of the spirits Ward channelled was Dr. Penfield. (For the record, Ward’s relationship with the deceased Penfield began in 1980, well before the line ‘I smell burnt toast’ became Heritage Minute famous in 1991.)

Also, McEnaney has a family member who lives with brain injury.

“I was researching epilepsy and seizures and Dr. Wilder Penfield was coming up quite a bit,” McEnaney said. “I was remembering he was [one of] my granny’s spirit guides. So I asked my aunt for all her writings and there are like 200 pages of typed up transcripts.”

A still from the play Brain Storm, a woman in an old fashioned surgeon's uniform pulls off her gloves

After pouring through her grandmother’s notes, researching Dr. Penfield’s work and spending a year collaborating with four actors, McEnaney’s play, Brain Storm, about a woman trying to navigate through her new reality of living with brain injury, hit the Toronto Fringe Festival this week, and runs until July 15th.

(BIST Members can see Brain Storm for FREE on July 13th, and after join McEnaney to discuss the play. You must register in advance, HERE.)

“One of the ways [the main character, Kate] tries to [come to terms with her brain injury] is she turns to her grandmother, who is dead and had previously been a medium,” McEnaney said. “One of the messages she had channelled was from Dr. Wilder Penfield, and the message was that the mind goes on after death.”

Penfield’s work fascinates McEnaney because the neurosurgeon was able to change people’s reality – what they saw, smelled or heard – simply by placing electrodes on different parts of their brain. In Penfield’s book, The Mystery of the Mind: A Critical Study of Consciousness and the Human Brain Penfield theorizes that life after death is possible, if the mind can find a different source of energy. The brain, Penfield believes, is what fuels the mind.

From what McEnaney has experienced through her family member, this is similar to some of the effects of brain injury. A person’s injured brain may be unable to filter sounds and images, creating an intensity which is often overwhelming, leading to the question of what is reality and what is not.

“Without brain injury, we’re moving through the world not hearing so many things, not seeing so many things because the brain is filtering so we can focus,” McEnaney said. “When you are brain injured, everything is coming in at once and you’re becoming overstimulated because the reality is so intense. It’s like, ok whose reality is it?”

A woman in old fashioned surgeon's gear looks at the camera

For McEnaney, it’s not important whether her grandmother really channelled spirits. (Though Ward’s notes on Dr. Penfield mimic his writings, which Ward had never read before she began channelling him.) But what is important is that her play opens up a conversation in the brain injury community.

“Every brain injury is different, and so is the one that you see in the show, but I think there are some commonalities that people will recognize,” McEnaney said.

Register HERE to see Brain Storm on July 13th with BIST!

If you can’t come with BIST on July 13th, you can buy tickets for Brain Storm HERE.

 

BRAIN STORM is co-created and performed by Hayley Carr, Maïza Dubhé, Shayna Virginillo, and Alexandra Montagnese. Conceived of and directed by Taliesin McEnaney, set and costume designed by Will Bezek with lighting design by Claire Hill.

 Thanks to our Event Sponsor

bist-1.ca-Platinum-Sponsor

IMAGES COURTESY OF LUCID LUDIC

Feeling what you cannot see

BY: MARK KONING

As I lie in my bed I breathe in and out while staring at the ceiling. I can feel all of the bones in my body as I stretch myself awake. I rub the sleep from my pupils and rise to a seated position.

Five fingers;

Five toes;

I extend and wiggle.

I climb to my feet and slowly shuffle my way into the bathroom.

The mirror on the wall stares at me.

Two eyes to see with;

One nose to smell with;

A mouth full of teeth.

Mark Koning in a hoodie, looking down
Mark Koning

There are no physical scars or indentations on my head. There is no numbness to my face. My arms and legs have full motion, so there is no need for a wheelchair or use of any other kind of assistive device that can be seen. I know that not all injuries are the same, but still…

What is wrong with me?

Do they know what they cannot see?

Do I?

I feel the skin on my cheekbones and look toward the mirror with pretty clear vision.

I sometimes feel that part of me is forever hidden.

Shadowed; unseen.

Maybe it is not what they don’t see, maybe it is what they don’t understand.

While I may live with a brain injury, my brain lives without borders, and what I mean by this is that my limitations only go as far as I let them bother me. For me, one plus one may not always equal two, and what I need to do is come to the conclusion that this is alright. There is no shame in it. It hurts me to know that not everyone else can find this same reasoning.

Because of it though, I still often find myself waking up only to look into that mirror and wonder. What is depression supposed to look like? Is this chronic fatigue that I feel, this confusion and frustration, this struggle to retain information, this cognitive search for words that quite often get lost, this uncertainty that I am challenged with, the extra time I require and need to slow down, are these things real? Are these things a result of my brain injury?

But I know the answer to these questions. And even though it is a continuing struggle between what I feel and that which cannot be seen, I know. I know of the strength and of the beauty and of the patience. I know of the possibilities, the potential, and the greatness that lies within. I know that if you only allow your eyes to see, you can end up missing out on a lot.


During Brain Injury Awareness Month this June, Mark Koning is donating  50% of the proceeds of his book, Challenging Barriers and Walking the Path to BIST! Contact Mark over Twitter or Facebook.

The headache and heartache of romance

BY: MARK KONING

As Valentine’s Day approaches, love is (supposedly) in the air, but what does that mean to a brain injury survivor? Personally, I’m not a Cupid fan favourite. Are my feelings brain injury related? I don’t know.

heart that says 'stay single'
PHOTO: ANTI-VALENTINE’S DAY

The thought of recognizing a shared love with close family and friends basically sits well with me. But the celebration of romance? That just gives me a headache. I don’t have anything against the concept of a relationship between two people – whether it’s in a marriage or a ‘going steady’ deal – but the idea of personally entering into a romantic relationship with someone causes an intermittent cranial pain.

I find just the idea of cramming liaisons between two partners into one day overwhelming. I understand that romance is a blossoming thing that is not just about one calendar day, but still…

I’ve experienced a few relationships throughout my life which have resulted in happiness and heartache as tag-alongs. Some of these I’ve written about in my book, Challenging Barriers & Walking the Path.

Nothing I’ve gone through has grown into a long, lasting, relationship. These experiences have, however, lead to feelings of discomfort. I’ve been faced with not knowing what to do or say, and seeing as how I’ve grown up not knowing what to do or say, the feeling scares me. I’ve had, and still have at times, difficulties understanding myself, so trying to understand the opposite sex can result in a spinning effect.

It has taken me some confusion, and heartache, to understand and feel comfortable with who I am. I don’t know if I am ready for anything else.

This ABI has presented so many difficulties, but I think, for me, has also offered so much clarity. I’ve learned to work hard and take things in stride, so perhaps my Valentine is still yet to come.


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.

 

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.

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.