Journalism

Brain Injury Toolkit

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Next month, I am participating in a research group with the Trauma and Neurosurgery Program at St. Michael’s Hospital in Toronto. The topic is brain injuries and depression. The group’s aim is to create some sort of technological application to help alleviate the depression that accompanies a brain injury.

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Off the bat, this seems a bit problematic to me. The first thing doctors tell you when you have a concussion is to avoid technology. Sound causes tinnitus, the bright light of a screen causes headaches, overall, it’s not good for your eyes to be looking at a small screen. What they do tell you to do is lie in bed and stare at a wall in the dark.

With this in mind, I thought it would be helpful to share what has worked for me. Obviously, everyone’s experience with brain injuries is different; we hit different parts of our heads, at different severities and each of us react to things in different ways. To be honest, I am grateful that I am at a point in my recovery that I can even write something this extensive.

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Aloe Vera Plant

1. Plants: My brain injury often leaves me feeling powerless and without the ability to control anything. Plants are beautiful and cheap; they define the word cultivate. When I feel like I can’t manage anything, I can take care of a plant. I am able to water it once a week. Because I, for the most part, spend everyday sitting on my couch, it’s lovely to watch new leaves sprout on my coffee table, or better yet, window sill. Something is alive and living even while everything else feels incredibly still. There is also the magical effects that the gorgeous natural green has on our eyes; chlorophyll and vitamin D for me are like the same feelings I have when I eat sushi or tom yum soup; I know it does something great for my brain (apparently in the latter it’s the fish oil lubing things up). The brain injury makes it difficult to be outside for too long; let nature come to you. There it is, the outside world right in front of you, at your disposal. Also what’s great about plants is that I am able to feel like I have control over deciding what sort of pot I can put it in.

I bought two plants: an aloe vera plant and a red-edged dracaena. From a recent article in the Huffington Post, entitled, “Ten Houseplants to De-Stress Your Home” on aloe vera plants, they say:

The gel of the aloe plant has a number of healing properties, from soothing skin burns and cuts to detoxing the body, and it can also help to monitor the air quality in your home. The plant can help clear the air of pollutants found in chemical cleaning products, and when the amount of harmful chemicals in the air becomes excessive, the plants’ leaves will display brown spots. Just an FYI: Grows best with lots of sun.

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Red-Edged Dracaena

The same article on my red-edged dracaena:

“This beautiful, vibrant plant can grow to be ceiling-height (15-foot dracaenas are common), making it a great plant for decorating and filling up space. It also removes toxins including xylene, trichloroethylene and formaldehyde from the air. Grows best in sunlight.” Mine has been getting huge. The bottom parts of the leaves are purple and they make me very happy.

2. Aromatherapy: This past December, my best friend Sharon changed my nickname from, “Complicated Katie” to “Karma Katie” (it’s currently “Comeback Katie”). Aromatherapy oil, which I previously considered a bit cheesy nineties Body Shop, turns out to be great. You can buy a diffuser from the Dollarama and essential oils are usually around $11. In November, my acupuncturist friend Jonathan Handel brought me a special blend made by Brenna Lewis from TOCA. Entitled the “Clarity Blend”, this oil contains lavender, basil, cedarwood, rosemary and petitgrain.

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I like to keep my little kit on a plate.

While staring at my plants and listening to Crosby, Stills and Nash (see #7), I used the entire bottle within a week. Breathing the scents in, I felt calm and enlivened. Brenna explains why this blend made me feel so great:

Lavender and rosemary put together are wonderful for anything related to the brain. Rosemary is stimulating while lavender is calming and promotes focus. Basil is similar to rosemary, stimulating the senses. Petitgrain is related to citurus, which is always uplifting; when you smell grapefruit or lemon, you automatically feel clarity. Finally, if there are many uplifting scents for the brain, it is important to create balance, which is where the grounding cedarwood comes in. Cedarwood is grounding and will bring you out of your head. Altogether, this combination helps balance between the two energies of stimulating and grounding.

I am currently using an oil I bought at Whole Foods, called “Gray Matter Batter”, which has calming chamomile and stimulating peppermint. It smells clean and pleasant; sometimes I put it on my temples and wrists as a perfume.

3. Epsom salts: These are a cheap thrill, really. I continuously buy these giant jugs for about $6 from the pharmacy. I put two cups in the bathtub, sometimes with Dr. Bronner’s peppermint soap, sometimes alone. At first, taking a bath was great for me because it helped ease the bruises of the accident I was in. My neurosurgeon has recently told me that my brain injury was ‘rotational’, the right side of my body hit the edge of a car door. Lying in a bath helps my head too. Because a brain injury will make you incredibly, bone-shakingly tired, baths are great. When you are spending the entire day lying down as it is, baths feel like the greatest luxury. Putting your ears underwater and only hearing your heartbeat is a spa unto itself.

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Some benefits of Epsom salts: reduces inflammation, helps muscle and nerve function, flushes toxins, helps ease migraine headaches, relaxes the nervous system, soothes back pain and aching limbs, eases muscle strain and heals cuts.

Your skin will absorb more magnesium and sulfates through a bath than when taken orally, which is great. Sometimes with a brain injury, you might spend your time sleeping and lying around, but it feels like you just can’t get that high quality sleep that you need. An Epsom salt bath will help you acheive this; these baths guarantee an excellent repose.

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This will be your new POV. Also, bathing is very cinematic and melodramatic, which can be fun.

This past summer, when I had my accident, I was buying the eucalyptus-scented salts, which, combined with my air conditioner and white walls, made my apartment feel like a lovely spa; perfect for recuperation. After a bit of time, the eucalyptus felt a bit chemical-y, so I am now using plain salts. I suggest adding a bit of essential oils to the bath, or also using your aromatherapy diffuser right next to the bathtub. Originally, I would sit in the tub for hours, watching many episodes of Mad Men and Southpark. BE CAREFUL NOT TO FALL ASLEEP IN THE TUB. I’m only half-joking.

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I made this Chipotle Corn with Kale on a Saturday night. Here’s the recipe.

4. Cooking: One of the first things I learnt about my brain injury is that eating junk food is a BIG NO NO. And when I say junk food, I mean things like Newman’s Own Italian Salad Dressing. Immediately after the accident, it was practically impossible for me to make my own food (I couldn’t even stand up to cut an avocado), so I would buy prepackaged sandwiches from the grocery story. White baguettes with sundried tomato and cheese were the best for me because they were so bland. Over time, eating anything slightly processed would make me dizzy and nauseous; extra miserable.

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When I began osteopathy (see #8), organizing my spice rack was a pastime. I learnt the joy of putting everything in a glass jar!

As the months have gone on, this has changed. A few months after the accident, I saw an Ayurvedic practioner who put me on a ten-day detox. As you readers might know, a brain injury often causes weight gain because you are too weak to exercise. Lying in bed can lead to boredom and overeating.

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This is some Japanese vegan curry I made. I learnt the secret of perfect vegan ground beef: put a can of soybeans in the blender! I know it kind of looks like puke, but I promise it was delicious! Here’s the recipe.

In the past six months, I have become a health freak. I bought Gigi Cohen’s cookbook, “Nourishing Friends” and have become addicted to websites like Joyous Health and Joyful Belly. Because I have been limited in what I can do, cooking has become my go-to activity to soothe my mind and help me feel productive. Some days, all I do is go to the grocery store and come home and cook. Vegetables, like plants, are such a clear symbol of vitality that they have been able to appease me. Similar to caring for plants, cooking helps me know that I can accomplish something in the safety of my own home.

5. Felicity: Television has been a touchy subject for me when it comes to my brain injury. All the doctors and other brain injury sufferers told me to watch it as little as possible, especially in the first few months. The depression and boredom of hanging out in bed would lend itself to me cheating, even when staring at the screen was clearly making me worse. As a result, some of my tastes in television viewing shifted. Watching Portlandia definitely irritated my brain: too much repetition in the jokes- the show is all about ANNOYING PEOPLE!!!

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You are not allowed to watch anything violent so I gave Felicity, a show that I previously mocked, a shot. I am proud to say that I have now watched the entire series two and a half times.

Felicity is an incredible show that has taught me so much. When the show initially aired, I was in high school and never watched it; the clean aesthetic and serious nature was not my bag (I was more into my taped episode of SNL starring Eric Idle and Kate Bush). I thought the show was for lame-Os and jocks. I couldn’t have been more wrong. The fact is, I was not mature enough to understand the complexity of the show. The show’s creator, J.J. Abrams, is a genius.

Now that I am older, I realize that Felicity might be one of the best shows ever. Regarding how it helps one with a brain injury, the show is filled with earth tones and whispers; most characters are sulking and navel gazing in their wood-panneled dorms, listening to WB-friendly late nineties bands that sound like Camera Obscura (Sloan is played at least once). Most conflicts resolve in curling up with a big sweater and trying to feel safe. PERFECT FOR BRAIN INJURIES.

On a more personal note, the show deals with growing up in painful and complex ways. In my late twenties, the plotlines resonate with me more than when the show originally aired. The young and innocent Felicity goes through university, tackling many challenges with an incredible amount of grace and dignity. My sister now tells me that she can’t sleep unless she’s seen an episode.

6. Walking: As has been discussed, the possibility of exercise goes out the window with a brain injury. Even simple yoga classes can end up in head pain and staring at a wall. The only recourse is walking.

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Walking with earplugs (a new best friend to be used anytime, even in the house when your parents are taking care of you and fighting amongst themselves) or headphones is great. Walking in parks, in particular, can help you feel better for obvious reasons. Avoiding traffic and crossing the street should be attempted; I now find myself spewing out insults at cars and people who bike on the sidewalk.

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These are the cheapest that Long and McQuade have- $30. Super comfy!

7. Folk music: One of the funniest things about this brain injury has been the changes in my ability to listen to music. Immediately after the accident, I was very angry and found myself listening to PJ Harvey on repeat.

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Sheela Na-Gig non-stop

Then I was not really interested in music; it was too painful, I didn’t have the patience for it and it would give me tinnitus. As time went on, I was drawn to COMPLETELY DIFFERENT BANDS THAN USUAL. People like Cat Power, Alela Diane and Enya became my staples. For the record, I used to hate folk music and was indifferent to new age. Now I understand why people are into it; this music elicits emotion in a very honest, direct, easy and accessible way. It has only been in recent months that I am able to return to my ‘edgy’ electronic music that is a bit more upbeat, harsh and conceptual; my brain enjoys it at a higher level of thinking, I believe. I am glad to have it back, but I am grateful to be able to appreciate a whole new, softer genre of music.

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On a side note, Songza also really helped me. For those who are unfamiliar with it, it’s a website and Smartphone application that provides an endless amount of customized playlists based on mood, activity and genre. Songza’s design is really fun; they begin by pointing out what day and time it is. This can be very helpful; with a brain injury, I had no structure in my life, this gave me some sense of order. The fun of listening to the different mixes was held up against my tinnitus, but still it was great, especially for walks.

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The World of Songza

8. Healers: Doctors can be great for the brain injury, but at some point, they can only provide so much relief for this very mysterious affliction. The following are a list of some other health practitioners who have helped me:

Occupational therapist: An occupational therapist is someone who helps you reintegrate back into society. Mine understands my brain injury more than I do. Whereas I usually feel like nobody understands when they are talking too much, giving me too many details and I start to get confused and irritated, she can see it on my face even before I realize it is happening. She has given me a few exercises, like quantifying the amount of energy every activity takes me and making sure that it doesn’t exceed fifteen points per day, sort of like Weight Watchers. Instead of food, though, I count things like walking to the grocery store.

Another exercise was making me do something that I was uncomfortable with for at least ten minutes a day. For me, that meant walking on the incredibly busy Queen St. This helped me reacclimatize to something that continues to cause me anxiety.

Acupuncturist: My acupuncturist was able to get to me in ways that I didn’t think possible. Whereas the sports injury doctor only saw my concussion as being caused by a hit to my head, my acupuncturist was able to see things a bit more holistically; she noted that I had an inflamed vertebrae on the upper-right side of my back and that there was a lack of blood flow going to my neck  and things weren’t quite right in my arm; all contributing factors to my brain injury. The acupuncture helped with the nausea I had when in moving vehicles, it helped with pain, it calmed me down. Often, afterwards, I was very sensitive and depressed. I would insist on absolute silence on the way home and then would need to be alone sometimes for days after a treatment.

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That’s not me in the photo, but that is where my acupuncturist would mostly treat me. The needles hurt but also feel good in a very localized kind of way.

I saw my acupuncturist twice a week for about three months. She also gave me some Chinese herbs to stimulate my blood flow and reduce pain. I was taking twelve pills a day. I could feel it making my heart beat faster and harder.

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I would go through a box of these in about 3 days. Good times.

Osteopath: For those who are unfamiliar with osteopathy, here is a short definition of it from the Ontario Association of Osteopathic Practictioners:

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Manual osteopathy is based on 4 basic principles:

  1. Each structure in the body supports the body’s functions. If a structure is damaged, out of place, or otherwise not working properly, the body will not function at its best.
  2. The natural flow of the body’s fluids – lymphatic, vascular, and neurological – must be preserved and maintained.
  3. The human body is the sum of its parts. Its physical, emotional, social, spiritual, and cognitive systems don’t work independently -they work in harmony.
  4. When the body has no restrictions, it has the inherent ability to heal itself.

Osteopathic Manual Practitioners recognize that a patient is an integrated whole. When all of the body’s components are in balance, a person is complete and in total health.

I had been told that acupuncture and osteopathy work well together. It can be quite expensive, but is often covered by insurance. To tell you the truth, at times I felt a bit silly lying on the table, completely still. My osteopath/cranio-sacral therapist would do things like hold my head until she could feel it release; the movements are so small I wondered if she was doing anything at all. Turns out, she was balancing out my bones and the liquids in my body. According to her, my body was stuck in the position I was in when I was hit, sitting on my bicycle. Similar to my acupuncturist, even though the hit hadn’t been too hard, my osteopath believed there was a block in my body that was preventing the blood to go to my brain.

Amongst her many diagnosis, my body was tilted and my pelvis was off-centre which was making it hard for me to walk and making me completely out of it. She said that the tingling in my fingers was caused by a pinched nerve in my elbow.

One time, I was falling asleep on the table and was woken up to what I thought was my very own fart! Turns out, she had flipped over my spleen; an organ that is associated with fear in the osteopathic profession. It sounded like a fish slipping through my fingers. I was very moody for a few days afterwards and had intense, anxiety-ridden dreams.

I really enjoyed the ritual of going to see my osteopath, who would acknowledge how depressed I was. Every Saturday morning, I would layer up in sweatpants and make my way to her office. She would treat me for an hour and then I, completely zonked out and emotional, would sit in David’s Tea for an additional hour, reading the Huffington Post on my iPhone. I would walk home, listening to Tracy Chapman and call it a day. The rest of my weekend would include cooking, walking, aromatherapy, staring at my plants, watching American Netflix and enjoying my couch.

I would like to point out that some doctors have been extremely helpful to me. image

Dr. Laura Cruz, from the Pivot Sport Medicine and Orthopaedics Clinic was great. She has a great bedside manner, is up-to-date on the latest advancements on treating concussions and is the one who told me about the Motor Vehicle Accidents Claims Fund, an insurance option for people who don’t have insurance.

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My GP, Dr. Danesh Sood, has also been incredibly caring. I was seeing him twice a week at some points. He has been able to curate all the other specialists that I have seen.

While it was very difficult to book an appointment at the Head Injury Clinic at Saint Michael’s Hospital (I had a cousin who’s friends with the head make a call), once I did see someone, neurosurgeon Dr. Waseem, he was very patient and sat with me for an hour while I described my symptoms. His nurses were also very helpful in suggesting that I get a lawyer to help me deal with the Motor Vehicle Accidents Fund, who would then go onto help me cover the costs of a neuropsychological assessment.

9. Lawyer: Beginning in January, I started the second phase of my recovery; searching for a personal injuries lawyer. Talking with lawyers on the phone and making notes was the beginning in trying to get my brain working again. Lawyer jargon is a lot for anyone to take in; I was proud when I could regurgitate to other people the assessments that various lawyers had made about my situation. Going to meet lawyers helped me structure my time and helped me figure out how much stimulation i could take it; at the beginning, forty-five minutes. I finally picked Patrick Brown, from McLeish Orlando to be lawyer. His law firm is super cool; they give out free helmets to kids in their spare time and work on changing biking policy in Toronto. 

Some Final Notes and Other Thoughts: 

Know when you begin to get a headache, stop what you are doing. That might sound obvious, but if you get a headache from everything, sometimes you want to say, ‘$%^& it.’ Don’t.

A friend recently noted that my brain injury has forced me to be extra human with myself. You must be patient with the task at hand; getting better. You cannot push through things, this will only make you worse. I had been practicing yoga for twelve years when I had my accident; I understood such principles, but when you have to practice them in such a simultaneously basic and intense way, it reminded me of the first and only time I went for my driver’s license test: actually go as slowly as they tell you, even if it feels unnatural. Slow and steady sometimes does, in fact, win the race.

On Anxiety: 

One doctor, who advised me to take the semester off of school after I freaked out after two days of classes (it ended up being the entire year), looked me in the eye and told me that he didn’t know how long this recovery would be; it had been a month and a half. He said it could be another three weeks or another nine months; it was like looking into a crystal ball.

This Wednesday will be the nine-month anniversary of my brain injury. In terms of practicing how human I am, the injury has imbued the idea of focusing on the present; we don’t know how long anything will last.

It’s important to note that sometimes it can be difficult to differentiate where a bad mood comes from: the biochemistry in your head, the fact that you have effectively decreased the quality and halted the course of your life, the inability for people to understand what you are going through, the absolute uncertainty of the future…. all of these are major facts in why a person might become depressed and anxious with an acquired brain injury. It’s complex, to say the least. I felt like I was the only one who could look out for myself and dealing with the instituon for getting help can be extra trying when you can only concentrate for a limited amount of time and take in new information. Having picked my lawyer in Jauary, it has been over three months and I am still waiting for my insurance to go through so that I can get this neuropsych assessment. While I am definitely thankful that as time has passed, there is a decreasing need for me to get this test because I AM recovering, it would have felt great to know that could have been done.

One of the most difficult things about a brain injury has been answering people when they ask how I am doing. Often, I have wanted to say, “A lot better” but the truth is that recovery has been incredibly slow and progress is not linear. You are sort of just existing, sort of like everyone does in real life.

On Biking and Toronto:

For those who were unaware, TORONTO HAS THE LARGEST COLLISION RATE OUT OF ANY CITY IN ALL OF NORTH AMERICA. Since 2009, there has been an increase in cycling deaths in the city. There are many reasons for this, it is obviously extremely frustrating——— we need to take action on this and actively educate drivers about biking safety. Despite what Rob Ford may say about what he thinks about bike lanes, bikers are really trying their best: we bike because it is cheaper than public transit, it is environmentally friendly and will get us places faster. People make mistakes all the time. We need education and awareness; being on a bike in Toronto sometimes feels like a personal affront against all car drivers.

So, this has been my brain injury journey. I know that my experience and advice are unique on some levels, but I just need to share it. I hope that whoever is reading this gets something out of it, whether they find themselves or someone they care about in a similar situation, or not. If you have any questions/comments, feel free to email me at katie.kotler@gmail.com.

Thanks,

Katie

PS: I made MIXTAPE that helped me get through these past few months.

  1. Vashti Bunyan- Train
  2. Tracy Chapman- Remember the Tinman
  3. Cat Power- I Don’t Blame You
  4. Natalie Merchant- Wonderland
  5. Alela Diane- The Rifle
  6. Jeans Wilder- Slowburn
  7. Kitaro- Koi
  8. Tangerine Dream- Hyperborea
  9. Vangelis- Sirens’ Whispering 
  10. Laurie Anderson- Walking and Falling
  11. Enya- Caribbean Blue
  12. Chanteclair- Wave Pool
  13. Joe Crow- Compulsion
  14. Shirley Ellis- The Clapping Song
  15. Wilson Phillips- Hold On
  16. Kindness- Swinging Party

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