NaNoWriMo 2022

 

Dark Matter Coffee: Osmium | Chicago, IL

My official first year in Chicago has come and gone. From personal experience, the first 12 months is almost always a little disorienting – particularly if you have very little to no network in your new homebase.

I am the queen of starting over; I understood what I was up against and knew there would be an adjustment period ahead.

Unfortunately, I was unable to participate in last year’s NaNo. At the time, there were other things that took precedent, however, I did manage to punch out a few really good interviews over the spring and summer months.

Something With A Little Ginger.

Between the excitement, the discomfort, and the isolation of being in a new, more diverse environment, my book project fell from top of mind. As I become more settled and familiar with the city [neighborhood and transit navigation, developing friendships etc], I have started to re-center myself.

This relocation has been emotionally challenging, but I’m back to give you an update and wrap up 2022 strong. The idea here is to become more aligned with this project while throwing some consistency in the bowl, ha. This is a one woman show – I do the best I can.

Cleary 2022 was meant to be a “growth” year for me.  My limits have been tested in multiple areas of life, siphoning my attention and draining my spirit. Through it all, I still managed to passively put in work, consuming audio versions of various memoirs and a lot of Brene Brown. I love Brene Brown. And self-help-y material that, although unrelated to the book project, has been helpful in prompting my return.

There was a point that I thought about taking a writer’s workshop through the University of Iowa to help get me back on track. That didn’t pan out – I was pressed for time [I found out about it, late] and processing [2] breakups. And looking for a new job. And dealing with housing issues. And acclimating to Chicago. And attempting to create community as a single, 30+ year old woman. And dealing with family.  And half-ass dating in a pool with pee in it.

But I’m glad you’ve decided stick around.

I always come back. Always. This is a passion project for me – I may set it down for a bit, live my life, explore, but I return with renewed perspective on how to interpret the set of events leading up to and the aftermath of, my brain bleed.

---

Here’s What I’m Thinking For This Years’ Go-Round:

I have to finish my proposal. I’ve been working on it since late 2019, then Covid happened and threw everything off. It’s essentially a 20+ page document detailing the book chapters and summary, attached to a marketing plan. Included in the document is a research portion I’m high-key dreading – a deep dive into the book audience: who am I doing this for? Why? Where are they? How do I reach them?

[Funny enough, I’m assisting with a research-based marketing project in my day job – I don’t normally do market research. The best practices, techniques, resources and tools are eye-opening].

But the spotlight is on the proposal. I really want to get this buttoned up.

The good part: I’m halfway there.

Good luck everyone!

Mood Music: It’s Givin’ - Latto

#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.

---

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.”

---

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: Joe, The Podcaster

 

Los Angeles, CA

I love podcasts – I listen to them while I work. While I clean. While I cook. Scroll through my Spotify account and you’ll see a handful of cultural, political, informative and spiritual podcasts, guaranteed to give an eargasm.

The idea of dropping in to hear a conversation, a hot take, to be enlightened or to laugh, appeal to my natural curiosity.

On the hunt for stroke resources, I came across Joe Borges, one of two hosts of The NeuroNerds podcast that has been in production for three years.

Joe has a bald head and an energetic, warm personality; always open to chat with fellow survivors. The thing I’ve noticed about this community of people, is the comradery and kindness.

He and his co-host Lauren started the podcast after meeting at a party, “I was sharing my story and this woman started staring. She came up to me and shared that she suffered a major concussion due to a car accident. Everything I was saying, resonated with her; we were dealing with similar things. We met for coffee and I realized that she was a huge nerd - we came up with the idea of meeting weekly to record a podcast to share our recovery journey. It started as a way for both of us to connect and heal, but turned into something much larger.”

Prior to podcasting, Joe spent his career working as a retail manager and a small business owner. Unfortunately, in the 2008 recession, he lost his business, later transitioning into consulting and music management.

The then, 39 year-old needed a creative way to process his emotions after suffering from his own hemorrhage, “I wasn’t able to go back to the way things were, so I needed to figure out a how to recover mentally – I needed a way to get all of the thoughts and feelings I had inside of me, out. Starting my podcast gave me a platform to share my healing process and move forward.”

Double Espresso With Joe.

Joe’s hemorrhage occurred back in August 2016, while out at a bar. His right basal ganglia ruptured, resulting in left side neglect that, thankfully, only lasted a few days. He still suffers from short term memory issues and tremors in his right hand. Like most, Joe completed a combination of both in and outpatient physical and occupational therapy to help get him back on track. The podcast as a creative outlet helps keep him focused, but it’s not without its’ flubs, “my memory is still the biggest issue for me. With Lauren and I, it’s literally the brain-injured leading the brain-injured. We once thought we recorded an entire episode but forgot to press ‘record.’ Having my girlfriend as the show’s producer has been amazing – she’s not only my caregiver but my handler as well.”

As a survivor myself, I understand the difficulty that come with accepting the new person, new challenges and ultimately, a new reality. The anxiety and onset depression from mourning your former life can attack your core, pushing you more off center. Joe found a way to climb out of the hole, regaining balance.

“I desperately needed a way to share what was going on with me, post-stroke. I was in a new body and mind. My podcast gave me that platform. My stroke gave me a second chance at life. I never really shared anything about myself before - I was always a very private person, but post-stroke, I’m an open book. I feel we all need to share, to educate the world and prevent others from going through what I have. 80% of all strokes can be prevented. My stroke was preventable. If I can help someone from becoming part of my community, all of this is worth it.”

In the times of covid-19 and civil unrest across the country, survivors are often put in a sticky position. Joe is doing his part by spreading a message of hope, particularly for Black survivors who are at the cross section. I was recently a guest on episode 114 of the podcast, discussing my personal experience with the pandemic.

“We do our best to stay current. When major events take place in the world, we take action. My podcast has a continuing series of interviews called Amplify Black Voices; I give Black brain injury survivors a platform to share what it’s like living in the world today.  We also do our best to interview fellow survivors as often as possible to get as many stories out there. Information is so important. Our stories are so important. We’re working to share the most current and best information that we can for the community.”

One of Joe’s favorite episodes is #57 [Emilia Clarke, SameYou.org and Imposter Syndrome Part 2], where the duo discuss the psychological effects that often come after a brain injury and actress Emilia Clarke, most known for her role as Daenerys Targareyen on HBO’s ‘Game of Thrones, ’ who experienced a brain aneurysm a few years back.

In episodes #40 and 41 [AVM Survivor Thomas Mejia Part 1 & 2] he helps a fellow survivor and close friend open about the struggles of recovery.  In episode #67 [Joe and the Valley Presbyterian Hospital Incident] Joe gets unfiltered about a traumatic hospital incident, resulting in PTSD.

“It’s deep and nothing like our other episodes. Trigger warning to anyone who tunes in.”

I listened to the aforementioned episodes and got teary eyed myself. Even through the tough stuff, Joe remains optimistic:

“Patience was never one of my virtues. I always want to do more. I was able to stand, now I want to walk. I’m walking, now I want to run. My outpatient therapist told me, after I continued to push, that I was going to harm myself. That I needed to gain patience. He said the one thing that really changed my recovery to that point: ‘you have to be patient or you will forever be a patient.’  I never wanted to go back to the hospital again, so I worked so hard at being patient. It was the best advice I could have ever gotten. I’m here and functional because of it.”

His therapist is right – it takes time to heal. Impatience, especially in the beginning, can be detrimental and often leads to harsh setbacks; it’s one of the lessons I had to learn the hard way in my own recovery.

“Life beyond stroke can be what you make it. We have been given a gift that most will never get: a second chance to live. We didn’t get that second chance to do the same things we did before. To stress and worry. To be angry and bitter. We survived to live. Life can still be difficult, but no matter how hard it gets, we are here. We made it. We are blessed enough to be here to experience it. Now it’s time for us to live. Truly live.”

Joe is currently working on creating the NeuroNerd Network:  a place for brain injury survivors to connect.

I am happy that I was able to find him – his presence, strength and enthusiasm for life is needed in survivor community.

Fast5 Facts:

Define Success:  Waking up healthy, happy and content
Coffee or Tea: Double espresso
Who/What Is Your Motivator: Life & my community
What Balances You: Mediation
Favorite Color: Pink

You can check the out TheNeuroNerds Podcast on your favorite streaming service or at TheNeuroNerds.com. Follow Joe on IG @joesorocks

Mood Music: Otis – Jay Z, Kanye West ft. Otis Redding

Where Do We Go From Here?

 

Home: Seattle, WA

The ugliness finally came to a head in the post-Obama era: the popped zit and nasty sludge on the face of America is out in the open.  A combination of fear, anger and frustration are now front and center.

I’m not going to do an intensive deep dive analysis of everything going on; the entire world is watching our country as it implodes. If you are here, you are already aware.

The right combination of COVID, the economic fallout of a quarantine, the lack of leadership and uncertainty, sprinkled with deliberate injustice – a filmed, “snuff” video that saw a police officer in Minneapolis arresting a man using brute force, kneeling on his neck for 8 minutes and 46 seconds – lit the fuse.

Enough is enough.

The Bad:

I previously spoke about COVID and its’ effect on survivors. The anxiety that it may cut closer to home, left me on edge; I was desperately praying it wouldn’t.

Iowa was one of the handful of states that resisted a full shut down.  I saw many of my former schoolhouse peers expressing concern with Gov. Reynolds COVID management or lack thereof.  

I come from a working-class background – most of my tribe would be considered “essential employees,” and either stood on the front lines or were furloughed. They don’t have the luxury of working from home.

Black people, working class and poor folk are on the battleground in the service industry and manufacturing. Stocking your shelves, checking your pulse, delivering your food items or Amazon orders. Building your tires, processing your meats, serving your food, providing you with live entertainment.

With increased exposure, I knew it was inevitable; the insidious respiratory disease found its’ way into my family. COVID has the propensity to trigger any underlying health issues – and unfortunately, it did.

As such, the past couple of weeks have been incredibly gut-wrenching, stressful, confusing and terrifying. I am 1,700 miles away in Seattle; it’s not so easy to hop on a plane given our current climate and my own health concerns.

I received the news mid-May. It is now June and my parents are in a stabilized place and doing well but I think about the subsequent effects:  what happens after they are cleared? What are the rates of re-infection?  Is my family “safe” now? Are we going to send them back into the petri dish? They are 56 and 62, respectively.

We are far from the wealth that could, at least partly, protect us and neither of them can afford to retire early. They have to work. I am frightened and rightly so. Without adequate, dependable leadership at the top, where do we go from here?

Americans are hopeless, depressed, no jobs, no money and my family, in particular is vulnerable: African American, over 50 with latent health concerns, which lead me to…

The Ugly: The World Is On Fire.

The murder of George Floyd in Minneapolis set off a storm of protests across the country, spiraling worldwide. This was not an isolated event – Black people have experienced the injustices and brutality of the police for years on end. Modern policing in this country’s southern states, manifested as a “slave patrol,” catching runaways to return to their “owners.”

We have always had a contentious relationship with law enforcement, however, this incident felt different.

What happened to George Floyd came on the heels of the death of Ahmaud Arbery, the young man shot while jogging and Breonna Taylor who was unlawfully shot in her home, as she slept.

There are countless others.

In the midst of a global pandemic, we rise, putting our lives at risk to express our fury.

Minneapolis, a city I lived in for 5 years, came through with a ‘one-two punch’ and I was proud to see it.

I heard complaints – people pushing back about the looting and rioting, concerned for buildings and things over bodies, “why can’t you do this peacefully?”

We have. It didn’t work. You are not hearing us.  Sometimes you have to do extreme shit to be seen.

A viral interview with author Kimberly Jones, breaks down the economic disparities that lead to the civil unrest. Looting and stealing are threaded throughout the fabric of America – did we conveniently forget how we got here?

The stress of being Black in a country that was not built for us to thrive.

The stress of having to fear for your life if someone erroneously calls the cops.

Job opportunities lost because of the hiring manager’s implicit bias.

Career advancement halted and given to someone with comparable or less experience.

Our ideas and bodies stolen and put on white faces because it’s more “palatable to the masses.”

Children not allowed to be children and instead viewed as adults.

High maternal mortality rates.

Food deserts. Red Lining. The list goes on. All of this is systemic racism and contributes to hypertension, heart disease and other ailments hastening an early and often death.

This is not something Black people can fix – we did not create the system.

What’s Coming:

Solidarity from the other side – I see the wave of protests filled with hundreds of White people and others. Corporations announcing their support of the Black community; I’m unsure of its’ authenticity – I sincerely hope and pray it is and that this isn’t something “trendy” people are hopping on because it’s good for their brand. Or worse: to placate.

My life is not trend. My safety is not a trend. My value is not a trend.

Yes, some of us are skeptical – we’ve had our hears broken time after time by this countries lies and quite honestly, bullshit. We’ve been in a physically, mentally, emotionally and financially abusive relationship with the United States since the moment we got here.

I’ll leave you with a quote from Amanda Seales – a cultural commentator, actor and comedian:

“We didn’t ask for solidarity, we didn’t ask for a Juneteeth holiday, we ask for legislation, we ask for you guys [white people] to make spaces in your financial realm to for actual growth. Animals evolve by learning what works and what doesn’t for their survival. In the world and its history of civilization…it has proven that it is best for Black folks’ survival to not simply just trust white words. We have seen so many times those words twisted and manipulated for the elevation of whiteness.”

Don’t just talk about it. BE about it.

Instead of mood music I’m linking a 1960 interview between James Baldwin & Nathan Cohen.

Resources For Donation:

• The Loveland Foundation for Black women and girls.

• Louisville Community Bail Fund helping to bail out arrested protesters.

Research local initiatives in your community to help defund the police.

Books To Read That Have Been Circulating [FYI - I’ve personally read them all]:

• “White Fragility” Robin DiAngelo

• “So You Want To Talk About Race”  Ijeoma Oluo

• “The New Jim Crow” Michelle Alexander

And lastly, this is a big election year – please, get out and vote.

#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