Running Late.

 

Intelligentsia Coffee | Chicago, IL

Welcome to 2023? I’ve had a busy winter season and it’s clear that you and I have a lot to catch up on. Let’s rewind a couple months to November – I owe you a NaNoWriMo update. Spoiler: I didn’t make my goal in 2022.

To be honest, my heart wasn’t in it this go-around. Life complications and seasonal depression have been kicking my ass. Listen, it takes a lot of work to maintain this blog—it’s even harder when you have a few wrenches thrown in the plan.

As mentioned in my last post, I’ve been reevaluating what I want to do with this project. While I’m still massaging my thoughts on it, I have enlisted a few friends for support as I get my proverbial sh*t together—guest posters who will help me keep this thing afloat!

Soft callout: if you are a member of the brain injury community and would like to share your written thoughts, words or experiences as a survivor [or caregiver], please feel free to reach out at nomadicaffeinesubmissions@gmail.com.

Having said all of that, I want to thank you for sticking around.

When I initially started this blog in 2016, the focus was more on the writing portion of my journey—it’s something that, for many years, I took pride in.  You can start from the beginning, here.

The desire to write something special stayed with me from childhood, but up until my stroke, it was difficult to find a clear way forward.

I decided to share my progress in terms of storytelling with both the survivor and the writing community, opting to cloak my personal narrative in a fictional format. I didn’t feel the need to have the spotlight on me. By structuring the book this way, I could create enough separation that would allow me to process everything that happened.   

At the time, I spent every Saturday or Sunday morning at a different coffeeshop in Minneapolis. My love of coffee [and coffeeshop culture associated with writers] inspired the name of this blog. The mood music element is based on my deep appreciate for music [thanks, Dad!]

Most of the time when I do the actual book writing, I listen to a mellow track or an hours long instrumental. Too much bass or catchy lyrics distract me – I’m pulled away from the story and into my own peripheral dance fantasies.

The characters were an amalgamation of several different people I knew in real life. I could fill in gaps using made up plot lines, essentially rewriting my story. Looking back to 2016, I remember feeling the buzz of excitement: I had a cadence and boundless optimism for what I was doing. It felt meaningful.

As I approached my 30th birthday, I found myself drawn to the jungles of Costa Rica. I spent a week at yoga retreat meditating in and around the Pacific Ocean.  I needed guidance on this project and the courage to change course.

I noodled on the decision for a bit, but ultimately decided to open the gates of vulnerability through storytelling in memoir form: a recount of my brain bleed from ages 24 to 30. The real deal.

In terms of the blog, when the pandemic hit, I could no longer visit coffeeshops—I thought my theme was shot. If I wanted to keep the blog, I had to pivot. My focus became #beyondthestroke: connecting with more of you on your journey moving forward despite having experienced a brain injury.

I made connections through social media and did interviews with survivors who shared their engaging and compelling experiences of reactivation.  These folks [myself included] have told their “origin story” repeatedly. I was particularly interested in hearing about how they restarted their lives and continue to flourish in the aftermath.

It is important to recognize that we are more than just our brain injuries.

Although these narratives are remarkably inspirational, even after a decade, I continue to grapple with finding my niche in this community.

Part of it could be seen as survivors’ remorse: you wouldn’t know if I didn’t tell you. Even in the absence of any obvious markers, I still face internal struggles – aphasia and general processing take much longer for me than most.

I live a relatively normal life, working full time in semi successful corporate career. I care for myself without a partner to rely on for support.  

I live as if it never ever happened.

I don’t have pictures of my recovery period to share, I no longer participate in medically prescribed physical, speech or occupational therapy and to be honest, I don’t view myself as “disabled.”

Because of this, I often wonder how serious people will take me.

I’m having a really hard time finding survivors who align with my story.

Running this blog is enjoyable, but it is a one woman show and can be overwhelming and quite frankly exhausting to do by myself.  

I’m hoping that in 2023, I can find a sustainable strategy to keep this project going. I’m hoping to find more people…like me.

Mood Music: Float - Janelle Monae, Seun Kuti + Egypt 80

Dancing Queen.

 

Chicago, IL

If you have been following me for a while, you should be familiar with my love of music and movement.  I’ve told this story before, but it’s my parent’s fault: when my mother was pregnant with me, she would hold a pair of 1980s Panasonic adjustable over-the-ear headphones on top of her belly – the outline of my tiny feet, kicked to each synth bass loop.

After my arrival in ’88, dad had nothing but 8-tracks on repeat.  R&B, funk, reggae, and pop-rock hits from the era and times past, flooded our home.

Every so often, my sister and I accompanied my parents to small, local outdoor music events as one of the few children in the crowd. Dad gave his shoulders to climb on for a better view of the show.

With the band and my parents’ permission, the lead let us run on stage for a song or two to dance. I knew early on that movin’ and groovin’ swam through my DNA.

I share this common thread with another survivor who happens to live a little closer to home. Based in Chicago, she, like many others in our community, finds comfort in knowing that there are people who share this unique experience.

Nikki Mammano, a 26-year-old MBA student and dance instructor, thoroughly appreciates the art.

“Dance has always been a creative outlet for me. What I can’t express in my writing, I dance it out. It’s  my escape and meditation- a way to shut off my busy mind and just be in the moment. Movement is literally medicine; I couldn’t be productive without it.”

Back in 2019, Nikki suffered an unfortunate TBI (traumatic brain injury) after being hit by a truck carrying an amusement park ride. Sadly, her partner who sat in the backseat with her, did not survive.

Beyond the obvious shock of it all, she suffered impacts to the right side of her brain, leading to temporary paralysis to the left side of her body. Nikki developed post-traumatic amnesia – remnants of the first three weeks are gone.

Despite the fact that she occasionally deals with vertigo and tension headaches, her condition has become significantly better over time. I personally remember my own struggle of feeling off-balance after returning to my 9-to-5; vertigo would come on suddenly, disrupting my work day.

“Physical Therapy helped a lot with this. Turning was tough at first, but honestly, dancing and moving my body again helped heal me. I was walking in just a little over two months and back on my yoga mat in three. At five months, I went back to work – the dance studio after six.”

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In the aftermath of any sort of brain injury, the way you function throughout the world will most certainly change; the control center of your body has been damaged. Her and I both understand all too well, navigating your new normal.

“Mental effort is now strenuous. Everything takes me a lot longer. I am slower to learn, read, finish tasks, problem-solve and so on. I use different tools like Speechify so I can listen at the same time as reading – it helps me to concentrate and focus. I am always making lists and writing things down right away or will forget things.”

My decision to become more involved in adult dance, pushed the recovery process forward. Repetitive movement, muscle memory, release of tension in the body and general exercise all helped in bringing back my balance.

“I got this mug when I was in acute rehab. My mama got it for me because hot chocolate is my comfort drink. It’s really, really special to me.”

Last summer, Nikki was presented the opportunity to make her first professional appearance since the accident at a studio in DC.

“I remember the night before the showcase during our last practice, I broke down in tears. I told my coach, Abraham, that I felt like the accident put me behind in my dancing. I was reminded who was coming to see me - the most important people in my life. My mom, dad, and grandpa didn’t know if I’d even be able to walk again after my injuries, let alone dance. During that performance, I felt so much gratitude for all of the healing my body has endured. Gratitude to be alive.”

For Nikki, dance calms her anxiety and ultimately soothes her soul. It delivers a purpose that keeps her moving every day.

“Your medically defined symptoms are not just textbook definitions - they are a part of you. A beautiful part of you. Whatever it is you may struggle with - focus, problem-solving, emotional dysregulation - your symptoms do not define you. They are a part of you and are what makes you human. It’s okay to be different and there’s nothing wrong with having to use different tools and strategies to help you. Your uniqueness is what makes you beautiful.”

You can keep up with Nikki and follow her story on Instagram @nikki.mammano.

Fast5 Facts:

Define Success: Flourishing
Coffee or Tea of Choice: Green Tea
Who/What Is Your Motivator: My Mama
What Balances You: Movement
Favorite Color: Light Blue

Mood Music: Not a Victim – David Francisco