Catching the Curveball.

 

Kingston, Ontario, Canada

When I think of candles, I immediately think relaxation. I’m reminded of a quintessential, almost clichéd scene: a woman at ease, bathing.

She sinks into massive bubble cloud with the lights dim in the background.  Her tub is surrounded by a barrage of colorful candles - the scents blend together, poking through each of her nostrils.

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Growing up, candles were the added cherry on top in my household – a bonus for a day spent cleaning: we’d straighten up the living room, take the dog out for a walk, vacuum, do the dishes and fold the laundry. The fragrance from a lit candle, signaled a job-well-done.

My memory says it’s dusk on a warm country night in nowheresville, Iowa by the time we finish.  I stay here for a minute. My mother is in the kitchen cutting vegetables, preparing dinner – powerful food aromas fight against the floral stagnation in the air.

The mixture is a smell I love and will never forget.

Coming back to reality, I travel further north outside the states where I meet Rhian Jansen, a candle maker in Kingston, Ontario, Canada. Rhian’s been in the business of making candles for 7 years selling through her e-commerce store, rhicreations.com.

Her favorite concoction is a comingling of sweet and subtle.

“The first scent combo I ever created was Vanilla & Sweet Grass.  I’ve always been a huge fan of sarcasm and witty banter so naturally that’s the direction I took with my branding.  I call this candle ‘The Middle Child’…and of course, I’m a middle child.”

Always crafty, she’s been making ‘something out of nothing’ for as long as she can remember. Rhian’s background in the beauty and fashion industry helped keep her aligned with a home goods aesthetic, offering complementary pieces for home and spa décor.

Her and I connected over my guest episode of the NeuroNerds podcast; I wanted to share her story about the impact of her recent brain bleed on her small business.

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In the middle of a global pandemic, Rhian became a member of the survivor club. An AVM [arteriovenous malformation] at the top right of her brain, bled, leading to paralysis of her entire left side. She spent a total of seven weeks hospitalized: two in-patient and five undergoing rehab.

Having the capacity to move forward in business under such unexpected physical and mental duress is challenging. Although medical insurance is a hot button issue in the US, most employers offer disability coverage: at the highest level, you are granted a ‘leave of absence’ to recover and a percentage of your income, in the interim.

During the time of my bleed, I was employed at an environmental engineering firm. I took three months of disability for treatment while receiving 60% of my paycheck. For an independent business owner, things can look a little different, particularly in another country.  

A year and some change out, she has had to make adjustments to accommodate the new version of herself; her energy and stamina can be limited – a common fallout among survivors.

“I give myself 2–3-hour windows to work; I set a timer and force myself to stop when it goes off.  It’s always a double edge sword: if I’m still feeling good cognitively, I get physical fatigue or vice-versa.”

She suggests adjusting your expectations upon returning to work; expecting the same outcomes as before only lead to disappointment and frustration. Life post bleed ebbs and flows – you have good days, ok days and really bad days.  The trick is to slow down and give yourself grace.

“Really learn to be in-tune with your body and listen to the cues it gives you. Don’t force anything.  I’ve also found a lot of comfort through alternative therapies like acupuncture and reiki.”

I remember diving head first into yoga after my treatment. I needed something that was accessible to me that I could use on a regular basis.  Slow flow vinyasa centered my breathing and stretched the stiff muscles I acquired from being bed ridden. It gave me something to focus and concentrate on, improving my overall balance.

“I never fully knew what being your own advocate meant until I was put in this situation where it was crucial to be one.”

I won’t lie: the road to recovery is tough; listening to your intuitive self will help guide you.

Check out Rhian on Facebook @rhicreations and IG @rhicreations_.

Fast5 Facts:

Define Success: Happiness
Coffee or Tea of Choice: Oat Vanilla Latte or a London Fog (depends on the day)
Who/What Is Your Motivator: Happiness
What Balances You: Boundaries
Favorite Color: (Forest) Green

Mood Music: Suddenly I See - KT Tunstall

#beyondthestroke: The Creative Producer.

 

Brooklyn, NY

CONFESSION: this is my little sister – we played together a lot in school. I’m 65% confident I fouled out and was benched this game. What a dope pic none-the-less.

Basketball in particular has had a choke hold on my family since the 80’s. My mother, standing at 6’2, was badass on the court, averaging 40 points a game. She led her high school team to the 1982 state championship in East Des Moines, Iowa, eventually solidifying her spot as a hall of famer. Some of the juice my mama had, trickled down to me as an adolescent – I certainly looked the part.

I played for a while in my younger years as a lengthy power forward. I’m only 5’7, but appear much taller in person; I just happen to be long-bodied.

My genetic ‘go-go gadget’ arms were often used to grab rebounds, moving the ball to the front on defense, however, it was evident from the outset that I am not a shooter. You could absolutely count on me to overestimate where the hoop is.

Around 11th grade, I started to make a heavy transition toward the arts: a lot of theater, a lot of dance and a lot of music fueled my creative expression and felt like a better fit.

Sports didn’t do it for me anymore. Jazz hands definitely did.

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A couple months ago, I came across Kyle Mengelkamp via Instagram – a well-known advocate  in the young stroke survivor community with a similar tie into sports, brain bleeds and the arts. He created #StrokeofGenius: a nonprofit group of content creators, dedicated to sharing the stories of survivors with brain injuries who have overcome to live happy, healthy lives. 

Kyle experienced his own clash with a brain aneurysm back in 1997. The then 11-year-old, was at a beach in Santa Barbara, CA with his friends after pitching a no-hitter in an all-star baseball game at the time of his incident. The unfortunate event impacted Kyle’s right side and like most of us in the community, he went on to do a number of treatments to aid in his recovery including speech, physical and mental health therapies.

By the time high school came around, he would be reintroduced to sports, developing the ‘Kyle Style’: a way of maneuvering his body that would allow him to functionally compete in athletics with his teammates. Although the ‘Kyle Style’ became a solution for participation, there would be a limit to how far he could advance in the game. When it was time for him to make a pivot, he looked to a trusted source for advice. 

“I talked to my coach about a new video production class opening up – I couldn’t do both [play basketball and take the class]. He told me, ‘The new Kyle is for you to discover who you are and what you are meant to be. If this means going into video production to tell stories, you have everyone’s support. It’s your choice.’ That gave me permission to try new things. It opened up a new pathway for me to explore.”

Building off of his new interest, Kyle would go on to become a Content Producer for the NY Mets, Youtuber Jim Kwik, Lacoste and other brands, giving him a leg up to pursue what would be his next venture.  He met an unlikely friend in 2017, who kicked open the door.

“I went to an AT&T video contest just to network and met an elderly woman from San Francisco that stumbled into the event by accident. She sat down in the theater chairs next to me and said, ‘So what's your story?’ We chatted for a bit and decided to meet up the next day.  She came with a proposal to do the video contest on my story. I agreed, only if we could put all the resources together in a few hours. I called everyone in my network and made it happen. We shot, I edited the video overnight, and out of 50 submissions, I won 1st place.”

From this chance meeting, the seed was planted; Kyle wanted to find a way to serve in the brain injury community, but didn’t know how. He went on to expand #StrokeofGenius, integrating other survivor stories.

The Illustrious Kyle.

“We raised 20k and went cross-country looking for people who had a brain injury and triumphed over tragedy to live happy healthy lives. Coming back from this journey, we noticed all of the people we met and interviewed had a similar way to finding their ‘stroke of genius,’ This inspired a change in our core message to mean:  ‘that moment where you choose how to live the rest of your life.’  We all have that moment, it usually comes up in conversation between yourself, your friends, a family member or a kind stranger at a bar.”

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One of his favorite interviews came out of a round-table discussion he held with Dr. Jill Bolte Taylor, an author and Harvard-trained neuroanatomist, who at 37 experienced a stroke in the left hemisphere of her brain.

Her book, “My Stroke of Insight: A Brain Scientist’s Personal Journey,” is a staple in the stroke community and was recommended to me during the time of my recovery.  In it, she chronicles a play-by-play of her mind deteriorating as it’s happening.

Kyle has his hand in a number of spin-off projects stemming from the #StrokeofGenius brand including The Brain Bar Salon – a gathering of like-minded individuals, celebrating people within the brain injury community, and his upcoming mini-doc, “Reborn Decades Apart.”

“We [Ty Hawkins and Cory Weissman] are all one decade apart and played basketball competitively. Ty is 2 years out, Cory is 12 years out, and I am almost 25 years out. We are all around the same age - 30 something. The mini-doc shows a different perspective of stroke recovery through the decades.”

His biggest lesson from all of this?

“Your story about what happened isn’t your story; it’s what you create in your new life. You are going to fail, get knocked down, stumble from defeat to defeat, however, you can create any possibility in your new life after a brain injury.”

You can find Kyle at @shareyourstrokeofgenius on Instagram.

Fast5 Facts:

Define Success: Love, Friends, Family
Coffee or Tea of Choice: Mocha on Weekends
Who/What Is Your Motivator: Everyone else
What Balances You: Playing Street Basketball
Favorite Color: Blue

Mood Music: Wannabe - Spice Girls

#beyondthestroke: Bridget, The Photographer.

 

Tucson, Arizona

The COVID quarantine has given me space to evaluate the ways in which I connect with other survivors. I was prompted to start a new series called #beyondthestroke; interviews featuring young women and men who have persevered through a brain injury, moving to forward to create interesting careers and fulfilling lives for themselves.

We are more than our strokes.

I met Bridget, a Photographer out of Tucson, via Instagram some odd months ago – we bonded over our shared experience as young survivors of cerebral hemorrhages. She has a playful personality; followers open a window into her universe: Bridget the Mother. Bridget the Survivor. Bridget the Photographer.  Her enthusiasm for the latter is mirrored in her collage work - exploring different shapes, colors and textures - sometimes using her kids as inspiration.

Under the Tucson Sun.

At the center of Bridget’s business is Boudoir – a sensual style of photography that aim to celebrate the beauty of women’s bodies. The word “Boudoir” is French meaning ‘a lady’s private dressing room.’

Such a sexy style of photography, juxtaposed against nurturing displays of motherhood, unwrap the competing layers that women often deal with – she addresses this in a recent Instagram post, “I am going to start posting my Boudoir work here. I should have done this long ago, but I was like ‘oh I can’t, someone will get offended.’ I am choosing to let go of the fear and choosing my happiness instead.”

I was curious to learn about her shift into photography and how the bleed opened a pathway to recognizing a new passion. Like myself, Bridget had an AVM rupture in her mid-twenties, “I was two miles into one of my favorite hiking trails with my daughter when it happened.”

The rupture occurred in her cerebellum, the part of the brain controlling balance and motor activities. She talks about the beginning of her photography journey shortly after her hemorrhage, using it to retain precious moments with her children.

“About a month after my stroke, my husband and I took my daughter out trick-or-treating - I woke up the next morning and realized that I couldn’t remember what she dressed up as, what candy she got, or which houses we went to. It made me sad to know my brain was now broken and I might miss out on those memories with my kids. I started taking pictures of everything, almost like a ‘backup hard drive’ for my broken brain.”

One of the more difficult parts of recovery is having to relearn basic proficiencies. Depending on the severity of the bleed - walking, talking, reading and life skills can be struggle.  Bridget taught herself how to navigate around a Canon T6i using resources like YouTube, but adding the task of mastering photography on top of stroke recovery, present more challenges.

“Learning how to use my camera was tough. Processing new information so early in my recovery was next to impossible. I would get frustrated with myself very easily; I view the world in a different way than most. Photography is about finding beauty and art in situations or moments that you wouldn’t normally see. My stroke rewired my brain to view the world in that way. Now, it’s just all about snapping that photo so the rest of the world can view it as that too!”

Finding the beauty in the madness as a form of self-expression, require a high level of creativity and confidence; Bridget constantly bucks the tradition with her photography.

“I thought it had “rules” in the beginning. I thought my photos needed to look a certain way. I convinced myself that my work had to resemble what my favorite photographers were doing. I had to teach myself how to trust my vision as an artist, and once I came out of my shell and did that… the magic started happening.”

Her brush with death reframed her outlook, “I’ve put blinders up to most negativity. I don’t focus on it – it doesn’t tear me down and get inside my mind. All I know now is to keep creating and making art that I love.”

I asked her about the creative process behind her photos and how she prepares both herself and clients for a shoot:

“Most clients have never had a Boudoir session and are extremely nervous. When it comes to my Boudoir work, I try and go over every single step of the session with them: how they will be posed, what I am looking at or what light I want to be able to catch in their hair. My clients are also my muse. I really soak in their vibes the second they walk in. When I am bombarded with all of the magical ideas in my mind, it’s tough to think of the right words to say or describe what I am thinking. Most of my clients find me through IG and are aware of my brain injury. They are aware of my unusual tendencies and the way I create. I am thankful for that.”

She shared a few stores with me about specific client sessions that stood out, highlighting the impact of working with women survivors of all kind.

“A woman came in for a session three weeks prior to getting a double mastectomy. I am all about loving your body at every single stage of your life and the fact that she trusted me to document that for her, was everything. Another was a stroke survivor: it was beyond rewarding for me.  After a stroke you become a “new version” of yourself. I didn’t like “the new me” for a very long time. I would take photos of other women who were beautiful, but I didn’t think of myself that way. Once I got behind my own lens and saw myself how the “photographer” in me would see me, it was a game changer. Being able to provide another stroke survivor with that view, was indescribable.”

Bridget’s story reminds me of something I read long ago: one of the ways to build confidence is by authentically giving to others.  Feelings of accomplishment from offering direct, positive impact – in her case, letting clients view themselves in the way she does – by extension, increase self-esteem.

Her advice to those coming out of post-stroke recovery: “Be patient with yourself. Be kind to yourself. Love yourself.”

Bridget is currently taking a break from her regular studio work due to the ongoing COVID-19 pandemic. “I’ve been getting creative and doing different styles of shoots to feed my soul for myself. I like the direction it is taking me, and I can’t wait to see what comes out of it!”

Fast5 Facts:

Define Success: Happiness
Coffee or Tea: Green Tea Latte
Who/What Is Your Motivation: My Children
What Balances You: Hiking
Favorite Color: Pink

You can catch up with Bridget on IG @bridgetclarice

Mood Music: Bright Eyes – Bowl of Oranges