Thomas So Rocks: Part 1

Thomas Mejia knew he had a brain abnormality 8 years ago, but due to lack of insurance, he left it unchecked. He never anticipated after those 8 years, he would not only find out he had one AVM, but two; plus a chiari brain and an aneurysm! Thomas is The NeuroNerds Patreon Donation Spotlight for this December and we are celebrating and supporting him by sharing his story below and donating a portion of our Patreon proceeds to support his final surgery and recovery. Details on how to support him at the end of this post. Now read on and be amazed by Thomas’ perseverance and bravery!

 Thomas, pre AVM craniotomy surgery.

Thomas, pre AVM craniotomy surgery.

About eight years ago, I was skating down Bedford Avenue in Brooklyn, New York when a car ran a stop sign and hit me. I flipped three times in the air and landed on my back, slapping my head onto the concrete. To make a long story short, I eventually ended up in the hospital to see if there was any damage. Assuming that I was fine, I cleared it with the nurse and went home. Later that evening they called me and said they had found something in my brain. A curved linear growth of three quarters of an inch in the left region of my brain.

To make a very long story short, 8 years passed by without me doing anything about it because I was without insurance. After moving to California and being a part of the Union and having insurance, I decided to finally take advantage of it. After my first visit with my doctor, the same abnormality was found. They decided to do further testing via MRI which I could never afford due to the insurance. It showed that I had an AVM. They said that it was inoperable and too close to my communication center which would then leave me with the inability to understand language or communicate with people. They decided to move forward with radiation instead.  

While waiting on my appointment for that, I went to my old workplace and spoke to the people who were supporting me in my time of need and explained to them that I could no longer work and that I would have to undergo serious medical treatment. One of the higher-ups by the name of Lance called me into his office and asked if I could share my results with him and his friend who happened to be Dr N Patel, the world's second best AVM surgeon in Boston. I immediately sent my records and it was shared with the doctor from Brigham and Women's Hospital in Boston who explain to me that what I had was completely operable and that the doctors that were looking at me where inept at what they do for a living. He assured me he could operate on me with minimal risk and full recovery.

 Thomas’ wife Nicole, family and his surgeon Dr. N Patel

Thomas’ wife Nicole, family and his surgeon Dr. N Patel

I decided to change my plans and booked a trip on a train across the United States to head to Boston. A few days before the train ride, I was hit in the head with an empty hard plastic ice cream container which then began to give me severe headaches. Now, I was used to headaches for most of my life which I now have come to understand were migraines, but these headaches were different because I could not get rid of the pain regardless of what pills I would take or how much rest I would have. I called my doctor and he told me to hold on tight because I was on my way to Boston anyway. We hopped on a train and it took four days to reach Boston. When I finally met with my doctor face-to-face after my results were in, he was in shock that I was able to even stand and talk to him because I had apparently been hemorrhaging for 11 days. According to my doctor that was the best news. My test also showed not only that I had a massive stroke due to my 11 days of hemorrhaging, but they also found a second AVM in my left hemisphere, a chiari brain, as well as an aneurysm behind my right eye. The doctor recommended that I stay in the hospital, but I opted to go home and spend time with my loved ones.

 Thomas, post 3 craniotomy surgeries. One more to go!

Thomas, post 3 craniotomy surgeries. One more to go!

 Thomas’ right eye post surgery.

Thomas’ right eye post surgery.

My surgery date came and after about five hours of surgery, they stopped. The next day was a day of rest and on the following day we continued my surgery, but it turned out to be an 18.5 hour surgery putting me at a total of 23.5 hours in two days. They had removed my right eye a few times to relieve pressure while working on my aneurysm and once they were done and sewing me up they told my family that I was almost done, but of course I wasn't. My aneurysm ruptured which then led me to the 18.5  hours.

Unable to to reach the aneurysm in the existing craniotomy they were forced to remove and detach my right eye in order to reach my ruptured aneurysm. Simply put, they saved my life multiple times in a 24-hour period. My eye was reattached, but since I'm missing the bridge it moves and bounces with every heartbeat or movement of my mouth. Because of the sheer amount of time under the knife, they decided to wait to try to fix my other AVM on a later date which brings us to my present moment. I am now only a few days away from my fourth brain surgery and hopefully a properly placed right eye.

 Thomas and Joe with their pups after his interview on The NeuroNerds podcast.

Thomas and Joe with their pups after his interview on The NeuroNerds podcast.

This past November, Thomas was interviewed by Joe on The NeuroNerds podcast and read the following poem during part two of that interview. Read it below and listen to him read it here (listen to the whole interview, but the poem is right at the end if you want to hear that first) - http://www.theneuronerds.com/ep-41


Hit Me With A Car And Saved My Life

A poem by Thomas Mejia

I guess the hardest thing is not having anyone to talk to. I know you’re reading this and thinking to yourself that you would be the one. That you would be the one to take the time. And I wholeheartedly appreciate that and believe you, but the truth is to me, how do I sit someone down and truly tell them that I do not want to die.

Who’s feelings do I have no regard for? Who am I willing to put through such a hopeless ordeal?

I only sit here alone and contemplate it. My dog is here and she truly loves me and I consider her to be one of my only friends, but even she, with her unconditional love cannot carry me through this burden. In fact, no one can.

Though there be tens, hundreds, thousands, maybe millions of volunteers, at the end it is only you that can carry it. And the fucked up thing is, every single one of us is going to have to do it. It just means nothing to you when it’s not your turn. But when it is your turn, there’s nothing that can take your attention away from it.

I must say that before I went in for my three craniotomies, the idea of dying was more artistic. I guess you can say, more obscure. I imagine dying or living are easy choices, but the inbetween is what has gotten to me. Unable to know if the things I do today are futile. Afraid that if I do futile things with my time now, I will regret them in the long life ahead of me. Lost in purpose. Unable to commit and willing to commit to either side. Eagar, I daresay. Funny. I lived day in and day out with debilitating headaches and migraines. And nowadays, the slightest pressure in my head sends me off into a creative chasm of despair and worry, understanding and acceptance and thankfully, repeatedly left unappeased.

I don’t want to face my maker right now. I don’t want everything to make sense. I don’t want the veil to fall. I just want to rest and feel at ease. Be peaceful. Left alone. Not that I shun my creator. I embrace my creator more than I ever have, I just don’t want to leave here yet.

Eternity, if it is that long, can wait a lifetime for me to arrive.

Honestly, I write these words boldly, but truly I’m helpless. As helpless as I was when John Enciu used to grab me and smash my head into the porcelain sink while at private school. I guess my situation makes death into a bully. Like John, always around the corner. Never knowing when it was going to happen, but knowing it was going to happen.

Today? No. Tomorrow? Maybe. Fuck you Thomas!

How about right now? How about right now, right now while you’re having the first good moment in weeks. Right now, while you’re laughing. Right now, while you’re dreaming about the things you can do. Right now, when your ego slips right in.

To continue to follow the Thomas’ journey, follow him at @tmejia111 on Instagram. Support his last craniotomy and recovery through TheNeuroNerds’ Patreon during the month of December and a portion of the proceeds will go towards his GoFundMe! You can also support his GoFundMe directly HERE. Connect with Thomas and more stroke and brain injury survivors on the YouSoRock Facebook Support Group at https://www.facebook.com/groups/yousorock.


Maggie So Rocks

Maggie was 33-years old with a bright future ahead of her when the unexpected occurred and she suffered a sudden stroke. Read about how she is creating a new, bright future for herself by turning tragedy into triumph through art, theater and film.

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 Maggie performing with Denver’s Phamaly Theater Company post-stroke.

Maggie performing with Denver’s Phamaly Theater Company post-stroke.

My name is Maggie Whittum and I am 37 years old. I grew up in the mountains of Colorado hiking, horseback riding, camping, and snowboarding. I studied drama in college and lived and worked abroad for many years. I wanted to be a professional actor and director. I fancied myself to be exceptionally independent and capable, vibrant and full of grace, ambition, and vivacity. My career was going well and I was in graduate school. I was engaged and planning to start a family.

THEN…

Christmas Day 2014, I had a stroke at age 33. Very unexpectedly, a cavernous angioma in my brainstem started to hemorrhage (I didn't know it was there). Horrendous things ensued – left-sided paralysis, facial paralysis, extreme visual impairment, a ventilator, two acute care hospitals, weeks in the ICU, brain surgery, five weeks in a rehab hospital. That was early 2015 – I would end up needing three more major surgeries in 2015. So, my 2015 was full of a lot of hospitals and doctors and therapy and… hope...and fear.

I had to permanently withdraw from my graduate program and my engagement fell apart. I moved back to Denver in early 2016 to be closer to my family. After 14 months, I finally started working again - doing part-time administrative work for a friend of mine from home. Life is completely different than I ever thought it could be. 

 Maggie’s vision post-stroke.

Maggie’s vision post-stroke.

I continue my therapy and doctors' appointments and I am coming to grips with what my long-term issues are. I endure intense chronic pain (constant burning, freezing, and numbness in my left side). My vision is extremely impaired - I can't drive, reading is difficult and watching live theatre, sadly, is quite unpleasant. My left side is uncoordinated and shaky, so no typing, and I can’t walk very well, let alone run or skip or jump. My face is still paralyzed, so I’m not conventionally “pretty” anymore.

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I'm searching for some way forward in all of this. I have gotten involved Denver's Phamaly Theatre Company, which exclusively casts actors with disabilities. Additionally, I am trying to produce a documentary film about my experience entitled The Great Now What. I started creating art pieces to try and describe what my physical and emotional state is now. The picture you see is one of my old acting headshots, reimagined to convey my shattered sense of self. You can see more of my artwork on the film Facebook page.

The title of the film mirrors the state of my life… Now what?? I’m not really sure. I’m trying to figure it out. 

To continue to follow the Maggie’s  journey, follow her at @maggiewhittum on Instagram and follow the making of her documentary film at Seed&Spark.  Connect with more stroke and brain injury survivors on the YouSoRock Facebook Support Group at https://www.facebook.com/groups/yousorock.

The Stromies So Rock

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Final part of our Three Stromies Spotlight:

Brought together through the common experience of suffering strokes at young ages, these three women are not only are thriving, but they’re helping other stroke and brain injury survivors feel less alone and supported through their recovery. Read about how they met and how they’re making the world a better place.

The Stromies are a trio of stroke survivors who have made it their mission to spread awareness and encouragement. Each Stromie longed to find someone their age who could truly understand what it felt like to reorient back into society post stroke. Someone who understood neurofatigue and what it felt like to need a nap in the middle of the day. Someone who understood the frustration of aphasia when trying to communicate a specific thought. Someone who understood being so overwhelmed and overstimulated in certain situations that they literally had to leave. Someone who simply “got it”.

Luck was on their side. Tamsen, Angie, and Sarah met through their volunteer work with the American Heart & Stroke Association. Tamsen’s husband jokingly said that they were like stroke homies “stromies” and the name stuck.

Stromie Tamsen was the keynote speaker for the American Heart Association’s Go Red for Women Expo in 2016, which was attended by Stromie Angie. Though they didn’t meet that night, they happened to be seated next to one another at an American Heart Association Advocacy Summit months later.

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It didn’t take long for the two to become fast friends. Both stroke survivors, moms, and fitness instructors, they had enough in common to compel them to start meeting up for coffee and conversations.

Unbeknownst to Tamsen and Angie, a fairly new stroke survivor (Stromie Sarah) was searching for connections within the stroke survivor community. Sarah happened upon a blog about Tamsen posted on the American Heart Association website and found her online. The two met up and found many commonalities in their stroke recovery journeys.

Tamsen knew that Sarah and Angie should meet, so she set up a time. The three met for coffee (none for Sarah – she prefers a diet coke) and they traded stories of survival.

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The three stroke survivors were so relieved to meet other people like them. They quickly realized that their stories could be powerful reminders to other stroke survivors that there’s life on the other side of stroke recovery. 

Initially, the Stromies wanted to write a book and knew that the first step was to establish a media presence. They created accounts and their Instagram page took on a life of its own with over 300 followers the first month. They realized that there were others like themselves – a lot of others! Young stroke survivors began sending in their stories and the community they built together is continuing to touch many lives. 

They decided to put the book idea on hold and see where their current journey takes them. They enjoy sharing their blogs as well as guest blogs, volunteering with the American Heart & Stroke Association, doing podcasts, and connecting with survivors in their own community as well as globally. They have already connected with about 20 young stroke survivors in their hometown of Omaha, Nebraska. They are excited to see the Stromies journey continue to unfold. 

To continue to follow the Three Stromies’  journey, follow them at @three_stromies on Instagram and read their blog at www.stromies.com.  Connect with more stroke and brain injury survivors on the YouSoRock Facebook Support Group at https://www.facebook.com/groups/yousorock.

Angie So Rocks

Part 3 of our Three Stromies Spotlight:

Angie Jorgenson has always maintained a strong sense of gratitude for all of the blessings in her life. Her faith and gratitude were put to the test when she was hit with a rare condition that caused her to suffer several strokes and nearly took her life. Read about how her amazing attitude and faith helped her overcome the odds to survive and thrive.

Each day is a beautiful gift.  I've always been grateful, but sometimes things unfold in your life that multiply that level of gratitude....

I have taught fitness classes for over 25 years.  I've run marathons and have always maintained a healthy lifestyle.  My husband Jon and I together have 4 fabulous kids.  

On December 7th, 2012, I woke up in the morning feeling terrible.  At first I thought I had the flu.  A short time later, it felt like thunder and lightning were going through my chest.  I went into the bathroom, thinking I was going to be sick.  I sank down on the floor, and everything may have ended there for me.  Jon was supposed to be out of town on a hunting trip with a good friend that day.  At midnight the night before, Jon received a text message that perhaps they should cancel the hunting trip because the direction of the wind had changed.  I like to think the Holy Spirit was helping out with that. :)

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Jon came into the bathroom and asked what he could do.  I said the words "Help me."  He said he knew that was serious because I'd never used those words before.  I then said "Hospital."  I fully believe that Jon saved my life, before the doctors took over.  I don't think I would have called 911 for myself.   The kids had just gone to school.  

On our way to Lakeside Hospital, we were sitting in school traffic.   I was crashing fast.  I barely remember Jon telling me to hang on as he drove in the ditch to get me around the traffic.  When I arrived at the ER, it took all my energy to sit in the wheelchair.  I was quickly taken back to a room.  Jon was ushered out of the room, and the last thing I remember was him holding my hand.  We said the words, "Through thick and thin...".   

A while later the Doctors came out and said they were still doing tests.  They knew something was terribly wrong, but my heart showed no blockages. Moments later, code blue was sounded.  My family was told that things had gone from bad to worse.  CPR was being performed on me.  I coded twice-- once for fifteen minutes, before I was revived.  At that point, I had 5% heart life, and I was not expected to live.  The Doctors told my family to say goodbye to me.  

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I was life flighted to NE Medicine.  The doctors told my family that I would not likely survive the flight.  I did get to NE Medicine, and I was immediately hooked up to ECMO.  ECMO is an amazing machine that does the work of your heart and lungs, when your body cannot do so.  All my organs had shut down.  I was hooked up to dialysis.  I had at least one stroke.  My blood pressure was documented at 300/155 more than once.  Jon signed to put me on a list for a heart transplant, if that would save my life.  My poor family spent the better part of a week at the hospital.  Jon was by my side.  He slept in a chair next to my bed and he believed for the both of us, that I could somehow survive.

As the week progressed, Doctors noticed that my heart was slowly getting stronger.  They prepared my family that the severity of the strokes, coding for 15 minutes and then some...might have me not knowing who I was, let alone know who they were.   My medical care was top notch.  My family, friends, coworkers and people I don't even know were praying for me.  On December 12th, 2012 (12-12-12!), my heart came back fully functional!  I would not need a heart transplant.  When the Doctors did surgery to take me off of ECMO, my blood pressure soared over the top, and I nearly coded again.  To add to the list of issues the docs were dealing with, there was also a tumor detected on my right adrenal gland.


God wasn't finished with me yet.  Two days later, I woke up.  It wasn't romantic, filled with kisses and off for a cheeseburger and "happily ever after" like in the movies.  I was strapped down to the bed because I was hooked up to so many medical devices.  Though medicated, I remember waking up that first time like it was yesterday.  I did not remember what had happened.  But I woke up.  Everyone was very excited.  I recognized my family that was in the room.  When asked if I was hungry, I said the word "cookie."  One word can be a victory.  My family was thrilled--that's her they said!  I have always had an appreciation and weakness for fresh baked cookies.  Warm.  With peanut butter and chocolate in them if possible.  Yum.

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The docs were excited.  My case was rare.  The tumor I had was a condition known as pheochromocytoma.  It is estimated that over half of pheo cases are found in autopsy. Mine had thrown me into heart failure, at least one stroke, organ failure, ECMO, and broken ribs and a cracked sternum, from all the CPR I received.  I was unable to use my hands or to walk.  I could barely speak a fluent sentence because of stroke aphasia.  But I woke up. Waking up, opening my eyes, smiling.  I remember thinking “well at least I woke up!”.  When Jon, doctors and family told me of the crazy events over the past week, it seemed unbelievable.  But my first thoughts were, "Thank you God that I get to go to my daughter's high school graduation” and “This has to be some kind of miracle."  I love it that I didn't wake up fearful.  My next thoughts were.....WHO BROKE MY RIBS?!

I flunked nearly every question I was asked.   I couldn't do kindergarten math.  I couldn't name the president or the hospital I was at.  My brain was a big malfunction.  It felt like files were scattered all over, and I couldn't figure out how to organize them.  The annoying part was that I knew that much, and it was humbling.

Positive thinking is what got me through. I tried to focus on what I could do, not what I couldn’t do.  I’d had a strong mindset from beginning, a heart full of gratitude and faith, even prior to this event.  After waking up from my near death experience, I would find one good thing each day to be thankful for and build on that.  I refused to focus on what I couldn’t do.  In addition to physical limitations, I was dealing with aphasia.  When I couldn’t get out what I was trying to say, I wouldn’t let myself get frustrated and I decided to take one day at a time. 

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Part of my healing has come by reaching out and helping others. When I get frustrated, I think to myself “I might be having a bad moment but I’m not having a bad day”.  Prior to my strokes, I was always very thankful, but this experience has intensified it ten fold. I’d been a Mary Kay sales director 20+ years and a fitness instructor for 25+ years.  I have returned to these things after my stroke and continue to strengthen my body and my heart.

To continue to follow Angie’s  journey, follow her at @angiejorgensen1 and @three_stromies on Instagram.  Connect with more stroke and brain injury survivors on the YouSoRock Facebook Support Group at https://www.facebook.com/groups/yousorock.

Tamsen So Rocks

Part 2 of our Three Stromies Spotlight:

Before her stroke, Tamsen Butler was a fitness instructor and writer so losing her ability to walk let alone workout as well as her ability to communicate was really hard, but she has pushed through strength and positivity with the support of her family and friends. Read about her unique perspective of going through her stroke experience and how she learned to accept and thrive in her new “normal” lifestyle.

 Tamsen rocking the ‘Persister’ shirt from  Like It Or Not Apparel

Tamsen rocking the ‘Persister’ shirt from Like It Or Not Apparel

Wednesday, July 22 wasn’t supposed to be an extraordinary day by any stretch of the imagination. All I had planned was a quick trip to the grocery store with my kids in tow followed by dropping lunch off at my husband’s office and then that night I was scheduled to teach a strength and conditioning class at a local gym. It was supposed to be a pretty typical summer day for the kids and me.

Things went awry at home during the process of putting the groceries away. My right eye stopped working and my head started hurting. I had the intense desire to sit down on the kitchen floor and asked my kids to grab me a pillow so I could lie down comfortably.

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My 11 year-old daughter stood over me and said, “I’m going to call Daddy.” What I tried to say in response was, “I’m alright. I’m OK,” but it came out as moans instead. I realized I was drooling and as my kids became more panicked I thought to myself, “Crap – I’m having a stroke.” I then dismissed the thought as stupid considering I’m a healthy 41 year-old woman with no medical history of anything other than occasional migraines and some lower back issues. 

Everything in these moments seemed so surreal, as though I was experiencing something on someone else’s behalf.  My daughter continued to stand over me, now with her hands on her hips, scolding me. “Momma, you’re not OK and you’re not alright.” She grabbed my phone and dialed my husband’s number. I began to fall asleep on the floor while I listened to her beg him to come home. 

My husband arrived home quickly. He tried to help me stand up but my left side gave out. He called 911 and they gave him a series of tests to give me ranging from putting my hands above my head, which I couldn’t do, and then they had him ask me questions including what day it was and my name. I was frustrated because my voice sounded like it was in slow motion and I could tell my husband was starting to panic. It wasn’t long before he told me an ambulance was on its way, and I soon heard the sirens.

The first thing I heard the paramedic say when he walked in was him commenting on my drooling, and I was slightly mortified. At one point one of the paramedics asked me, “What day is it, dear? Can you tell me what day it is?” I couldn’t remember offhand, so I tried to respond with, “This is the day that The Lord has made, I will rejoice and be glad in it.” The paramedic couldn’t understand me so I looked over at my husband and tried to implore him with my eyes to translate on my behalf, but he couldn’t understand me either.

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In the ambulance, one of the paramedics kept grabbing my arm saying, “Stay with us, Tamsen!” I just wanted them to let me sleep and started to wonder if they thought I was dying instead of sleeping. It was the first moment I wondered if I was indeed dying. I was upset with myself for not reminding my husband which company carried my life insurance policy before leaving the house.

When I was rolled into the hospital, various medical personnel started barraging me with questions. “Do you do drugs? Do you have diabetes? Do you smoke?” I kept repeating the same response as loudly and emphatically as I could: “NO! I’m very healthy! I’m healthy!” I think at one point I started saying, “I’m a fitness instructor! I’m healthy!” to anyone who would listen. As if by revealing my gym rat status they would let me go home. 

I remember hearing my husband’s voice as he tried to answer questions on my behalf. The doctor urged my husband to consent to give me tPA, which is known as a “blood clot blaster.” My husband immediately agreed, eager to do whatever he could to save the mother of his children. Everyone assured my husband that tPA was the best course of action. 

At some point they were wheeling me along to somewhere else in the hospital and I realized I was going to throw up. I couldn’t figure out how to form the words to warn the medical staff that I was going to be sick, so I started patting my stomach and tried to look the nurse in the eyes to let her know something was wrong. I felt intensely helpless in this moment. Most of my friends will argue that I never stop talking, so to suddenly lose the ability to talk was frightening. After a loud belch escaped my lips, the nurse looked down at me and asked if I was going to be sick. I nodded my head and she grabbed a bag for me just in time.

 The Three Stromies on their Skype interview with Joe for The NeuroNerds podcast.

The Three Stromies on their Skype interview with Joe for The NeuroNerds podcast.

My words did come back to me after they administered the tPA. Later while having a consultation with a speech pathologist, I managed to insist, “I’m usually very eloquent!” I then realized that I was spending a lot of energy making sure everyone who encountered me didn’t think this was the “real me.” The real me is healthy and eloquent, and certainly not helpless. And to tell you the truth, I couldn’t help but think that healthy, eloquent me didn’t deserve any of this. 

After a battery of various tests the doctors announced that I had a large hole in my heart, which allowed a blood clot a direct pathway to my brain, causing the stroke. I never knew I had a hole in my heart, and apparently it’s fairly common, but it was sure a jolting realization. Earlier that day I was in the grocery store, and now, here I was, in the ICU being told my heart is messed up.

Later, the occupational therapists assigned to me visited my room and asked if I was ready to try to walk. I thought about all the times I’d encouraged the people in my exercise classes to do just one more squat, and I thought about how strong my legs were, and I visualized myself standing up. I didn’t give myself the option of being scared to try to stand. I was able to stand with help, but walking was another story. The therapists literally had to teach me how to walk again. As I shuffled around the ICU with help, one of the nurses started applauding me. I joked with the therapist that I couldn’t remember the last time someone applauded me for walking.

It was later that night when I tried to call my brother but couldn’t figure out how to use my cell phone that I knew the stroke had affected my brain. 

It affected my emotions too. A week or so after the stroke a friend texted me a photo of her toddler running through a splash pad. It happened to be the same splash pad that a couple weeks before the stroke I had visited with my kids and had a great time. The picture made me sob as I mourned not being the mom I was before the stroke anymore.

Basically, I’d spent the past few weeks mourning my own death. The person I was before the stroke isn’t who I am now and it’s painfully apparent. Every day I’m reminded of something I can’t do as easily anymore.

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It’s not likely that I will soon drive to a meeting across town and confidently stride into the conference room with the swagger of a subject matter expert. I won’t soon throw my son over my shoulder and run through a splash pad while he shrieks in glee. Pre-stroke me didn’t have a month’s worth of medical appointments on the calendar already.

But here’s the happy ending: I’m alive. The stroke didn’t end me, although it certainly could have. As my family and I strive to figure out our new “normal” I can’t help but count my many blessings. I’ve relearned how to walk, talk, and even type and I fully expect to be back teaching fitness classes eventually.

To continue to follow Tamsen’s  journey, follow her at @tamsenbutler and @three_stromies on Instagram.  Connect with more stroke and brain injury survivors on the YouSoRock Facebook Support Group at https://www.facebook.com/groups/yousorock.

Sarah So Rocks

Part 1 of our Three Stromies Spotlight:

Sarah Conaway thought her daughter was the only emergency when she took her into the ER late one night in February 2016, but never could've anticipated that she, herself, was about to go through a major emergency and would suffer multiple strokes including a hemorrhagic one over the coming days. Read about her triumphant recovery and how she found her new normal, post stroke.

February 6, 2016 changed my life forever. My three-year-old daughter had been up all night crying because of a terrible earache.  My husband was out of town to attend his grandfather's funeral, so I was single-parenting. Finally around 3 AM I decided to take her to the emergency room. My mom offered to go with us, which seemed unnecessary at the time, but would prove to be such a blessing,

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As we arrived and sat down in the waiting room, I began to fill out the admissions paperwork and suddenly lost feeling on the right side of my body. It was a strange sensation because I knew that part of my body existed, but it was completely numb and I couldn't move it. It wasn’t until noon the next day that the CT scan showed I had a stroke.  I was in the right place at the right time. 

The next three days are a blur with snippets of memory. I remember they had my name spelled wrong on my wristband, I remember the look of fear in my husband's eyes and the look of desperation on my mother's face. I remember seeing church friends show up and take my daughter while telling us not to worry about her and let them know what we need. I remember telling the nurse that I had the worst headache I had ever had and then falling back asleep. My mother urged the doctors to do more testing because I was getting worse instead of getting better. She knew something more serious was wrong. Moms know these things. 

After an MRI they realized I had had a second stroke, which was hemorrhagic.  My brain was bleeding. My husband recants the phone call he received from the doctor while he was at swim lessons with our daughter. He had to make the snap decision to counteract my blood thinners in order to save my life. The lesser of two evils while my brain was filling with blood. A shot of Kcentra would thicken my blood to stop the bleeding. However it would also make me extremely susceptible to more clots and more strokes. Isn’t Coumadin supposed to prevent clotting? It didn’t make sense.

This was a scary time for my husband. He had to continue working full-time, be a single parent, and a caregiver to his wife. He went into survival mode.  He began planning for the worst. He found the Living Will, the disability information, and the life insurance policy.  After reviewing the paperwork he realized that I had just become eligible for my short-term disability one month prior to my strokes because of a waiting period due to pre-existing illnesses. He also found out that I was given a long-term disability policy through my employer that would kick in after the short-term policy expired. Without these policies, we would have been unable to continue living in our home. The fact that those policies were in place, in addition to just newly becoming effective, was not just coincidence. 

When I was finally able to speak they asked me what my daughter's name was and I said "Purple".  I have no recollection of this time.  I was completely bedridden and had to relearn basic activities of daily living that we take for granted every day. My neurologist told my family that the area in which I had my brain bleed is very rare and because of where it occurred, someday I would walk into his office and shake his hand. I remember six months later walking into his office and I remember shaking his hand.

Rehabbing post stroke was the hardest thing that I have ever done. At 34 years old I was relearning how to put 1 foot in front of the other. Learning how to function with roughly 50% vision. Learning how to talk without stuttering over every. single. word. Learning how to use my right arm when it is completely limp and useless on my right side. 

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One of the most difficult things post stroke other than rehabbing has been finding my new identity. Before my stroke I was a successful director of marketing and spearheading a $50 million expansion in Omaha, Nebraska. I was recruited from the East Coast to lead this project’s marketing and we were finding much success! My career was definitely my number one priority besides my family and I gave it 110%. I allowed it to define who I was and when that was completely stripped out from underneath me I was left feeling empty, worthless, and unsure of who I was. I am still trying to figure out the new Sarah. The new Sarah is a full-time mother, a church volunteer, a hospice volunteer, a writer, and she watches children after school. She is happy and constantly redefining who she is. 

I have come so far. I am forever indebted to the doctors, therapists, nurses, and staff members who have helped me reach independence.  Just over two years later I have roughly 50% vision, aphasia, short-term memory loss, apraxia, and hemiparesis, but I am ALIVE! 

I always tell people that I'm like a cat because I have multiple lives. I've already spent three of them due to life-threatening illnesses. Multiple times a day I catch myself thinking "this is God". And now instead of letting the busyness of every day life distract me from those feelings, I try to stop, listen, and be present in what God is saying. I look back on life prior to my strokes and am sad at how many of these moments I let pass because of something else that I let take priority in my life.  My work, doing the laundry, cleaning the house, etc. these were all things that I truly felt should be on the top of my to-do list. 

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It is no coincidence that we were in the hospital when I had my first stroke. It is no coincidence that my daughter had been crying long enough for me to take us to the emergency room in the middle of the night. It is no coincidence that she was healthy after we arrived at the hospital and did not have an ear infection. It is no coincidence. It is God.

 

 

 

 

 

To continue to follow Sarah's  journey, follow her at @sconaway160 and @three_stromies on Instagram.  Connect with more stroke and brain injury survivors on the YouSoRock Facebook Support Group at https://www.facebook.com/groups/yousorock.

Nefre So Rocks

Brazil native, Nefretire Melo couldn't have imagined suffering a stroke at such young age while living in London.  Read about her miraculous recovery and positive attitude throughout her recovery journey in Barcelona.

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I'm Nefre and I'm 26.  Everything was normal, except a neck pain that day!  I just was having my lunch and suddenly, I was dizzy and nauseous!  My reaction was to tell a friend on WhatsApp as I was alone at home.  Later on, already in hospital I found out that I had a stroke! Only 26 old?  Yeah, I know. What caused it, the doctors don't know.

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Life can change without your consent, that's it!  Now I am recovering, better than I thought! Everyday is a challenge, everyday I have a small victory!  My conception of life changed, my life changed! I am happy for being alive, for having a second chance, to be more grateful, to do something that can change other lives in a positive way!  If you are a #strokesuvivor just be strong, just believe, have faith and things will come. Nothing comes easy, work for it! You will be very proud, trust me. Thank you Jesus for giving me this chance!

 

 

 

 

 

 

To continue to follow Nefre  journey, follow her at @strokelifealive on Instagram.  Connect with more stroke and brain injury survivors on the YouSoRock Facebook Support Group at https://www.facebook.com/groups/yousorock.

Brisa So Rocks

Imagine feeling trapped in your own body with no way to communicate with the outside world.  This is how Brisa Alfaro felt at 4 years ago when she suffered a stroke which resulted in Locked-in Syndrome.  Be inspired by how she broke through all odds by keeping a positive mindset every step of her recovery.  
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I believe we’ve all asked ourselves “Why Me?” at one point of our lives...Why did this have to happen to ME? And “Why Now!?”  I found myself asking these very same questions about four years ago. Little did I know that I was about to survive a rare and severe “pons stroke” while I was on a business trip in New York City.

Did you know that Strokes can happen at any age?  Anyone at any age at any point in their lives can have a stroke. And I was no rare exception to this rule.  We certainly never expect for these things to happen when they do, and it’s just never really the right time when it does.  I was a very busy 32 year old, I was traveling and teaching in the beauty industry, I was living a busy, but great life. But regardless of my schedule, future plans or goals...it happened. March 29, 2014 changed my life forever.

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My case was very different than a typical right or left side stroke.  It didn’t happen in my brain, it happened in my brainstem. Your brainstem controls ALL basic activities in the human body except your eyes.  So what this means is that you can have a thought like, “I want to move my arm,” but those signals don’t travel through appropriately, leaving your body resembling a vegetative state....and trapped.

Think of a town, the town is your brain and your main highway going into that town is your brainstem.  Now something canhappen within this town (east or west), and you may not be able to enter that area right away or until it’s somewhat repaired, however if something happens to your “brainstem” this is your only highway going out of that town and now you’re “locked in” and really can’t communicate to others that you are in what I call “Brain Jail” because your body is awake and aware of everything around you, but you are physically left motionless and essentially locked in your own body.  I guess that’s why it’s given the name “Locked-in Syndrome”. #BrainJail

Meanwhile, I was given a less than a 1% chance of survival, but I knew I had to give my family a sign that I was not going to succumb to the inevitable fate that my doctors had prescribed.  I did! I started with my right hand and little by little I was making more and more movements that completely puzzled my doctors.

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I was like a newborn baby learning EVERYTHING all over again only as an adult...and hiding the fact that I was so extremely scared.  But nevertheless I kept forward! I started by holding up my own head, then standing with support, then sitting up in a wheelchair, then walking with a walker, then later with a cane and eventually I was able to walk unassisted.  Before I could breathe on my own, I was receiving oxygen through my trachea. Before I could eat, I was fed through a tube that had been placed in my stomach. And before I could speak, I pointed to letters on a paper that contained the alphabet.  But I still found it inside of me to celebrate every milestone, no matter how big or small. Any simple task that I may have taken for granted in the past, was now celebrated as if I had completed a marathon, because that’s what it physically felt like....daily.

It was exhausting, even getting dressed in the morning was a new daily challenge and goal that I had to meet.  I knew that this journey was not going to be easy, but I also didn’t think that this was going to be my destiny.  I was going to find a way to overcome it and I did! But imagine if I had just stopped when it became too difficult for me to keep going?  You see, life is ultimately what we make of it and what we choose to do with the cards that we’re dealt. We can keep complaining about our so called “fate” or “luck” or we can change it.  Receiving help should be welcomed, but ultimately it is up to us.

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You see, good or bad LIFE is going to happen, and actually...I wouldn’t have it any other way!  So when you wake up tomorrow, YOU get to decide on how you want to view the world and how you want to live in it.  We can always easily focus on all the negative around us or choose to purposely find the positive. This is why I choose to share my story on many different platforms, because my hope is that this message helps you realize that life is just is too short to keep having bad days.  Let’s really try to focus on those positive, and not just say that we are. Yes, we can have bad moments in our days but let that just be a moment and maybe not marinate in that moment for too long, because it is important for us to move on and just enjoy the rest of our beautiful day that we were given. It’s not always easy to do, I know.  But neither is catching that curveball that was thrown to you at lightning speed. So when life throws you a curveball, remember how strong you are, dust yourself off AND GET BACK UP. Keep playing this game of life, Never Ever Ever give up and please join me in having #NoMoreBadDays.

 

 

To continue to follow Brisa's  journey, follow her at @Brisa_Alfaro_ on Instagram and check out her website at www.BrisaAlfaro.com.  Also check out her story on “The Doctors” show: https://youtu.be/6C9tg_T1X9o.  Connect with more stroke and brain injury survivors on the YouSoRock Facebook Support Group at https://www.facebook.com/groups/yousorock.

Hannah So Rocks

Hannah Derwent never expected to wake up from brain surgery having experienced a new medical issue to recover from aside from her benign brain tumor - a stroke.  Read about how she is facing recovery head on with strength and courage.
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How to put a brain injury in succinct form? There's so much to say. Well, I had a craniotomy on 23rd May, 2017. It was for a meningioma, a benign brain tumor. They said considering the size, surgery was the only option. So I had surgery, that I was actually quite relaxed about. It was my first ever surgery and I was quite excited. It was a 12 hour operation and at the 7 hour mark, I had a bleed. An intraoperative bleed. A bleed caused by someone being in there. And it was on my brain stem, making the effect quite massive. Basically the scalpel gave me a brain stem stroke.

 So I woke, totally unable to move, talk and swallow. And with double vision and totally incontinent. How your life can change in 12 hours. I was working at parliament house just before the operation. Yes, with headaches and extreme fatigue, but I was otherwise functioning fine. On waking, not so much. So, what was supposed to be 10 days in hospital became three months! 

So after a stint in the ICU and the neurosurgery ward, I was sent to the rehab ward to be 'fixed'. I was in rehab for 2 months. On being discharged, rehab continued and still does. I'm still in rehab 4 days a week. I understand my recovery so far has been quite remarkable. I can now talk and swallow, albeit with some deficits. I pretty much walk everywhere, though have to work on my endurance. And I limp because my foot has dropped so I can't run. Not sure if those muscles will come back. Oh yeah, and I'm no longer incontinent! I'm still not back at work and it's been almost a year. But there's still much work to be done. Thing about the brain stem is that no cognition is done there, but it controls your automatic functions so physically, I was kind of wrecked. Now, not AS wrecked. My shoulder has also slightly subluxed, which reduces how much I can move it, but I'm increasingly doing things two handed. Though as I say to my surgeon, when he asks about my hand, I think my surgical career is over! Ha! 

So it's been a ride. It's very interesting having a physical disability, but no cognitive deficits. Which I'm grateful for, but everyone treats you like your stupid! Which I'm actually quite far from. So being treated like an idiot constantly is pretty hard. But I've realised that we all constantly make assumptions. If they want to know, they can ask and if they want to assume, let them do it. 

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And the monotony that is rehab continues. Oh, so monotonous...but so necessary. There's no other way to get better. I'm yet to have a setback, that'll be interesting when it comes. I've got the kind of personality that takes setbacks very hard, so we shall see how that pans out.

 Having a brain injury at 35 is not really how I planned things. But that's life, full of unplanned things. And tragedy is actually everywhere. People are just generally not talking about it. And considering how things could have been, I actually got off pretty lucky. Guess it could have been much better too. Anyway, the order of things has been set, no one can change the past, so we just aim to make the future better.

To continue to follow Hannah's journey, follow her at @hanny_span on Instagram and check out her blog at www.hannahderwent.com.  Connect with more stroke and brain injury survivors on the YouSoRock Facebook Support Group at https://www.facebook.com/groups/yousorock.

Emily (& Bethany) So Rock

Young and carefree, Emily never could have anticipated having a stroke in her twenties.  Despite the incredible challenge of surviving such an ordeal, Emily is beating the odds through the support of her sister Bethany and her family.  Read about her journey as a survivor and how she's now supporting and inspiring other survivors!
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We’re Emily and Bethany, sisters and co-founders of Like It Or Not Apparel, and we wouldn’t be writing a blog post today if not for Emily’s stroke 2.5 years ago. She is the survivor who inspired this whole adventure, so what better place to start than with her story!

(Written tag-team style with commentary from Emily in quotes. She has aphasia.)

BETHANY: On January 2, 2016, Emily traveled back to grad school in Indiana after spending the holidays with family. She was healthy, kicking-ass in her graduate program and enjoying life at 25 years old. She remembers watching the movie, Top Gun, with a friend that evening when the right side of her face started to feel weird. Her friend had EMS training and recognized that Emily was having a stroke.

EMILY: Basically, I almost died.

BETHANY:  Our family gathered within 24 hours. Testing revealed she had experienced a massive hemorrhagic stroke. Her brain was under incredible pressure from the brain bleed and there was no way to know the extent of damage. The prognosis of the first neurosurgeon:

EMILY:  Basically, dead. But I showed them!

BETHANY:  Fortunately, the second neurosurgeon offered some hope. The choices were: 1) wait and let the brain absorb the bleed. She would most likely have more strokes from the pressure. 2) High-risk, brain-pathway surgery that would relieve pressure on her brain by evacuating blood that had pooled on the left side.

This was an agonizing decision for our family, not to mention shocking and surreal. We’d all had breakfast with Emily less than 48 hours prior at my parents’ house. Suddenly she was unconscious and hooked up to tubes and wires and we were forced to make the monstrous choice between two terrifying (but potentially life-saving) options.

EMILY:  Woohoo! (Emily’s sarcasm is intact.)

BETHANY:  We opted for the surgery. There was so much unknown at that point. We decided that if we didn’t choose the surgery we would always wonder -- and if successful, the surgery would likely have a better outcome than not intervening.

And she survived! Our relief that she made it through surgery grew when we learned they removed almost 80% of the blood that was exerting pressure on her brain.

But then began “life post-stroke.” That season following her survival still held much uncertainty, hope, fear, and stressful conversations with doctors, about medical bills and what life might hold a month, year or decade in the future. (This eventually led to the creation of our brand.)

Within a couple weeks, she was transferred to a rehabilitation hospital where she worked with physical, occupational and speech therapists daily.

By then, she had been diagnosed with expressive aphasia and right-sided weakness. In other words, she was unable to speak or communicate her thoughts or questions and could not move the right side of her body. The first time she sang just a few words of “Happy Birthday” with a speech therapist was an especially big tear-jerker moment, and gallons of tears were being cried in those days.

She was discharged from the rehab hospital a few days before her 26th birthday. With a brace on her right leg, a cane and someone following right behind her, she walked into my parents’ house-- something we could hardly have hoped for two months prior.

Emily continues to work incredibly hard in outpatient therapy three days a week and does exercises and “homework” on days when she doesn’t have therapy.

REAL TALK

OK, that last sentence was a cop out. There’s just no easy way to summarize the nearly 2.5 years of therapy, steps forward and backward and feelings of frustration, pain, anger and numbness, to name a few.

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EMILY:  Yep.

BETHANY:  If you’re familiar with the life of a survivor, you get it. You know that this is where it really gets difficult. You’re out of crisis mode -- at least enough to get through the day-to-day, but your life is completely different, and neither you or the people supporting you quite feel equipped to put the pieces back, or how they even fit together.

Which, in a roundabout way, brings us to today. Last fall we created a space for those also on some part of this path: Like It Or Not Apparel. (www.likeitornotapparel.com)

Trying to acknowledge the reality of rebuilding your life as a survivor-- whether you survived injury, illness or something that doesn’t quite fit in a neat category. Like it or not, here we are.

 

 

To continue to follow Emily's journey, follow her and her sister Bethany at @likeitornotapparel on Instagram and check out their website at www.likeitornotapparel.com.  Connect with more stroke and brain injury survivors on the YouSoRock Facebook Support Group at https://www.facebook.com/groups/yousorock.

Mimi So Rocks

At 22, Mimi Hayes was embarking on a career as a teacher in Denver, Colorado.  Never could she have imagined that 4 years later, she would be living in New York pursuing a very different career as a comedian and author with her debut book set to release all because of a life threatening health crisis that would change her life forever.  Read about how she turned her brain injury into an opportunity to transform her life into a humorous and creative journey by "making brain hemorrhages look cool since 1992."
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So it was 2014 and I was in the first week of my student-teaching semester in Denver, Colorado (that's where I'm from). I was excited to be starting my career for the first time and nervous about all the typical things; meeting my students for the first time, getting them to like me and also do their homework in a timely manner.

As it turned out, I'd need to focus my attention elsewhere because in the first week of my teaching...my head exploded.

Now when I say exploded I'm being a bit dramatic. It was more of a slow leak I guess. But you get the idea. I had what's called a Cavernous Angioma rupture in my Cerebellum; that fun area of the brain responsible for a bunch of cool functions like walking, and talking, and seeing!

We didn't know that this was what happened until a few weeks into my symptoms which were things like nausea, clumsiness, and some weird double-vision. I was misdiagnosed several times with things like an ear infection, Vertigo, and my own doctor told me I was probably depressed and needed to take some Valium (if you didn't know, this is probably the worst thing you can ever tell someone with a BRAIN BLEED, but I digress!) So finally after my mother threatened with an attorney to get an MRI scan we found out what it was.

After being diagnosed, the neurologist decided to wait and see if the blood would reabsorb into wherever the heck it came from so that we wouldn't need to do surgery. I was on bedrest for about a month and over that time, my symptoms got worse and by mid-September I'd lost mobility on the whole left side of my body, had lost 20 pounds, was seeing double consistently, and couldn't taste on the left side of my tongue.

A second MRI revealed that the blood bubble had gotten larger, swelling parts of my brain. I received a craniotomy (fancy word for brain surgery!) on October 3, 2014, to remove the hemorrhage and surrounding cells. Luckily for me, it was in a real great place, providing them easy access so that they didn't have to go through a whole lot of tissue.

When I woke up from surgery I was dazed and confused, and most definitely thought I'd died and gone to heaven. I was also now seeing double AND sideways, which sounds really cool, but is actually quite strange. I spent several days in the ICU and eventually my vision flipped back right side up, although the double-vision took several months to fully correct.

After the ICU, I went to a rehabilitation hospital in Aurora, Colorado and received intensive physical, occupational, and speech therapy. I did a lot of things I never thought I'd have to do at 22; relearning how to walk again, doing basic tasks like how to maneuver in a kitchen, and, oddly enough, a lot of 3rd-grade math and logic problems.

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I was released on good behavior (and improved motor skills) within 2 weeks and returned to my parent's house. I did some outpatient therapy at the rehab center that winter, but I was back to the classroom by January! Woah, brain! Good job!

Teaching was not easy, and it was exceptionally harder now with a brain injury. I can honestly say it was the hardest experience of my life, aside from, you know, having my head opened and relearning how to walk and see and stuff...that was pretty tough too.

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After two years I left the classroom. I loved the students, but I found the career to be too demanding for my brain. While I was in recovery, I wrote a book which ultimately started out as a joke, but was recently picked up by a publisher when I moved to New York this summer and is coming out this year! You can follow my blog (and soon to be podcast) at mimihayes.com and look for my debut memoir, I'll Be OK, It's Just a Hole in My Head (A Memoir on Heartbreak and Head Trauma) coming to bookstores near you, September 18, 2018!

Thanks for having me, Joe! I hope that we can all spread awareness for brain injuries and help others who are struggling.

 

 

 

 

 

To continue to follow Mimi's journey, follow her at @mimihayesbrain on Instagram and check out her website at www.mimihayes.com.  Connect with more stroke and brain injury survivors on the YouSoRock Facebook Support Group at https://www.facebook.com/groups/yousorock.

Tabitha So Rocks

In 2015, Tabitha Bailey was a newlywed with her first child on the way.  Everything was lining up perfectly in her life so she could have never anticipated that she would be faced with a brain tumor that would require her to undergo brain surgery just days after giving birth. Read about how she maintained a positive attitude with the support of her husband, family, friends, faith and strength from her newfound motherhood.  

Part 1 – The Courtship

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I met my phenomenal husband when we were both in 7th grade.  Craig and I are both from the same hometown of Bakersfield, CA and would often run into each other at local student leadership events.  We ended up attending different high schools, which is like living on different planets when you are that young, and had lost contact over the years.  Fast forward to 2007, our junior year of college, Craig attended Arizona State University and I, California State University, Bakersfield.  Craig had come across my Facebook page and was like, ‘hey…I know that girl’, and sent me a direct message. He was totally flirting, it was cute.    We officially started dating June of 2012, and I was beyond smitten – our journey began.

 

 

Part 2 – Our Wedding

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About two years into our relationship Craig proposed to me in 2014, the day before his 28th birthday.  You know when you know, no need to waste time!  I was on cloud NINE and so blessed to be his fiancé!  Over the next year we attended pre-marital counseling sessions to prepare both mentally and physically for a successful marriage.  **Side bar – pre marital counseling is CRUCIAL to any successful marriage! SO much knowledge and information we have been able to apply over this past year – I highly recommend it.**  I also should mention that I made a vow to myself and God to wait on sex until marriage.  With Craig in line with my commitment we planned our gorgeous wedding and got married on February 21, 2015. 

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Part 3 – Our Pregnancy

After our amazing wedding, Craig and I spent the next several months enjoying one another, travelling, and just being a fun young married couple.  We decided that birth control wasn’t really for us, we figured this was in God’s hands.  We weren’t trying for a baby per say but we weren’t avoiding it either.  Approximately 5 months into our marriage, I found out I was pregnant with a beautiful baby girl!  We were beyond excited!  Our new baby would be the first grandchild for my parents and the first girl grandchild for my husband’s parents.  With much planning and anticipation, I went along with my pregnancy and experienced the “normal” pregnant side effects.  It was in my 3rd trimester that I started experiencing weird symptoms (extreme fatigue, vomiting, blurred vision, bad headaches and balance issues).  I didn’t think much of it and wrote off these signs as pregnancy side effects.  After several middle of the night ER visits and the doctor’s approval that I was all clear, I continued on wtih life.  The last weekend in January 2016 I had a beautiful baby shower, ready to welcome baby Mali. The next week I became really, really sick! So sick that I couldn’t even get out of bed.  My husband ended up calling my mom asking her to drive down to LA from Bakersfield and check on me.  My mom made it to my place, made me get up, take a shower and eat.  I remember sitting on my couch, vomiting and then I blacked out.  The next thing I knew, I woke up and was in the hospital with half of my head shaved.

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Part 4 – Our Crisis

My hair was gorgeous! I was rocking the natural look and my hair had grown SO much from the pregnancy hormones, and they CUT IT! (I still have to let this go…lol)  A CT/MRI scan was finally ordered and I was diagnosed with a benign brain tumor.  WOAH – unbelievable, I was pregnant with a brain tumor!   My family and I were devastated to say the least, no one in our family had experienced this before.  My fight or flight response triggered and I had no choice but to survive, not just for myself but for my family, my husband, and our unborn child – you have to do what you have to do as a mommy!  My OBGYN was amazing and transferred me to one of the best hospitals in the world to figure out a plan of action and to move quickly. I felt like Beyonce when I arrived, I had an entire team of doctors and nurses anticipating my arrival. Apparently being pregnant with a brain tumor is very rare, there are only 80 cases a year worldwide, so they were anxious to say the least. At the time I was 33 weeks pregnant with Mali, so in order to deliver a healthy baby and successfully remove my tumor, I had to WAIT – endure a little over a week in ICU and allow Mali to develop before having my surgery.  Just to let you know even a day in ICU will drive anyone insane!  There are all kinds of tubes plugged to you, nurses everywhere and no sleep from the constant beeping of the machines and medicine administration.  Mali was born February 8, 2016 via C-section.  I was under complete anesthesia; I have no recollection of the birth of my daughter, and this makes me very sad.  My brain surgery was February 10, 2015, 2 days after Mali’s birth, and would last 7 hours.  I woke up in immense pain, but the surgery was a success! I was in the hospital for a month, undergoing 4 surgeries and a week of rehab. My phenomenal husband, overflowing with faith, love and devotion, stayed in the hospital with me every night for a month – I didn’t think I could love him anymore than when I said I do.  I stand corrected.

Part 5 – My Recovery

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Can I just say God is amazing?  I have so many people praying, for me as I recover and heal.  I feel every single prayer :). The recovery process has been long and extremely hard.  My mother moved to LA for about six months to help my husband and I raise our newborn daughter (Thank you daddy for being at my bedside and allowing mommy to care for me during this crazy time.)  I did not even have enough strength to lift her, and I was scared of my own daughter.  Let me tell you how many crowns in Heaven my mom gets – she is incredible and set me up to succeed! My tumor was located on my Cerebellum, affecting my balance and motor skills.  As of today, I walk with a cane, have vision issues in my right eye, and I’m unable to write well with my right hand.  This is a vast improvement from where I started.  I am reading a book titled, “Find Your Brave” by Holly Wagner, which speaks to overcoming life’s many storms with Christ as your healer and comforter. Every day is a challenge as I feel I am finding my brave daily, but I am confident in God’s promises that He will put nothing on you that you cannot handle.  A lot of my healing process involves me conquering anxiety and fears, especially since I cannot drive yet due to my vision. Instead I take Ubers to gain some independence.  I really listen to God.

This is not easy for me to talk about, but I know that in order for me to fully heal I must share my story and give all of the glory to God because I am here. I am here as a wife, mother, daughter, sister and friend!  I have a purpose in this world, God has given me a purpose bigger than I ever could imagine.  This is only the beginning…

To continue to follow Tabitha's journey, follow her at @tabeebailey on Instagram.  Connect with more stroke and brain injury survivors on the YouSoRock Facebook Support Group at https://www.facebook.com/groups/yousorock.

Jamie So Rocks

When most kids were concerned with homework, friends and sports, Jamie Coyle was faced with a life changing medical crisis.  At the age of 12, she suffered a stroke.  Read about her unique recovery journey from a child's perspective into adulthood and how she is helping her fellow stroke survivors "never quit!"
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Hi, my name is Jamie Coyle. When I was 12 years old, I was a prestigious hockey player. During a game in a tournament, after I had just scored a goal, I collapsed on the bench. Not knowing what had happened, I was confused and couldn’t move my right side. As they later found out, I survived a stroke. Not many people thought that was possible at such a young age and because of how healthy and athletic I was. I’m now 22 years old, but it wasn’t easy growing up after having a catastrophic illness. I was depressed, sad and lonely. I wrote a book about my struggles called “The Luckiest Girl In The World,”  forwarded by none other than Tedy Bruschi. If you don’t know who that is, he played in the NFL on the New England Patriots and has retired. He also survived a stroke. Now my passion is connecting other survivors, sharing their stories to motivate and inspire recovering survivors, and raising awareness and educating others about strokes. I just recently started an Instagram account where I can do all of that! @strokesurvivorsneverquit is an account I created to tell other people’s stories of recovery and overcoming obstacles in the face of adversity. Everyday my goal is to never quit, never give up. I want to help spread that message to every survivor in the world.

To continue to follow Jamie's journey, follow her at @strokesurvivorsneverquit on Instagram.  Her book "The Luckiest Girl In The World" is available on Amazon HERE.  Connect with more brain injury survivors on the YouSoRock Facebook Support Group at Facebook.com/groups/yousorock.

Benjamin So Rocks

At 27, Benjamin Buchanan didn't think that continuing to smoke and engage in the practice of "dabbing" while smoking could actually have any seriously negative health affects on his body.  His perspective drastically changed when he received a life changing wake up call in December 2017 after suffering a hemorrhagic stroke.  Read about how he is changing his life for the better through his faith and courage to overcome all obstacles on his stroke recovery journey.  

So around this time last year I went to a doctors appointment complaining about chest pains. After a few tests and ultrasounds, the doctor diagnosed me with a congenital heart abnormality. At the time, I was super into dabbing and smoking marijuana and smoking cigarettes.  The doctor told me if I didn’t quit smoking I should be expecting a heart attack or a stroke within the next 8-10 months. So I decided to go against the doctor’s advice and continued to smoke.

By December 13, 2017, I had a vessel in my brain burst to abnormal circulation which resulted in me having a hemorrhagic  stroke. I was completely paralyzed and put into a medically induced coma.

 When I woke up in the hospital, I couldn’t believe it was real. I felt like my family was playing a joke on me. I ended up spending 22 days in the hospital before I was transferred to an acute rehab facility. The physical therapists and occupational therapists that I was working with in the hospital said I’d be there 6-8 weeks. Depending on my progress, I woke up everyday just wanting to go back to sleep! So pissed off at the position I was in. And through a lot of prayer and 3 hours of therapy a day - occupational, physical and speech, I only had to spend 8 days in the rehab center! The doctor, and the therapists were amazed.

I have crappy insurance so I haven’t had my brain scanned since back in December.  I had two seizures while I was in recovery at the hospital due to over medicating. The doctors were giving me 45mg of morphine every 8 hrs, and up to six 10mg Norco pills as breakers in between waiting for the morphine.

The first thing the doctor did when I got to the rehab center was take me off the pain meds and put me on some other pain reliever. I can’t remember the name, but the doctor at the rehab center did not want me on opioids at all!! And he was shocked to see the dosses they had me on.

Now I’m just chillin still waiting to see a neurologist. A couple weeks ago, I got my referrals for the outpatient physical therapy, occupational therapy and speech therapy and they said I’m good, I don’t gotta do anymore of them. They were all shocked by the progress I’ve made since December.  

I’ve got personality issues, depression and anxiety from what I can tell. I’m really anxious about getting in to see the neurologist to see how it’s looking. I’m not sure how you guys feel about religion, but I’ve been really focused on devoting my life to GOD.  Since all this happened, I’ve realized I ain’t trying to gamble my life not knowing where I’m going.

 

 

To continue to follow Benjamin's journey, follow him at @binyaminyo on Instagram.  Connect with more stroke and brain injury survivors on the YouSoRock Facebook Support Group at https://www.facebook.com/groups/yousorock.

Nich & Jamie So Rock

In 1999, at 18 years old, Nicholas Sorensen suffered a traumatic brain injury when he was ejected during a rollover car accident.  While his accident left him with the loss of his best friend and both physical and mental deficits, he also gained a partner, friend and caregiver in his wife, Jamie.  Read about Jamie Sorensen's experience of her husband, Nich's brain injury recovery journey from her perspective as his caregiver and support system.

Part 1

Originally published February 16, 2014

Our story began more than fifteen years ago. I met my husband, Nicholas, in high school; we were just acquaintances in our junior year. Nich sat behind me in our history class; he usually slept, or doodled on his homework, and then asked to copy my notes. He was very outgoing, social, and flirtatious. We were complete opposites and after high school, we went our separate ways.

On Saturday July 24th, 1999, at age eighteen, Nicholas was involved in a horrific rollover car accident. After spending a week at the Sand Dunes, Nich, his friends and family, were driving home in three separate cars. Nich’s family was in front, followed by Nich and his two best friends Melissa and Sean, and bringing up the rear was Melissa’s family. Nich’s Mom, Dad, and sister, in the lead car, lost sight of Nich and his friends, so they pulled into a rest stop to wait for them to catch up. That unfortunately never happened.

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At approximately 6:34 p.m. near Tremonton, Utah, the Highway Patrol received multiple phone calls from witnesses, saying that a white Jeep hit the center median, swerved, over corrected, and rolled two or three times end over end. Nich and his friends were thrown from the vehicle. The driver, Sean, had the least extensive injuries; he was awake and talking. Nich, unconscious was taken by ambulance to the local hospital in Tremonton. Melissa, suffered the most serious injuries, and was life lighted to the University of Utah hospital. Tragically, she did not survive.

Nich was at the Tremonton hospital for a short time. He had difficulty breathing, because his lungs were filling with fluid. They transported him immediately by ambulance, to the McKay-Dee hospital in Ogden, Utah for two days, and then another transfer to Cottonwood hospital, for the next three days. Upon his release, he was referred to a neurologist (for the brain injury), and attended rehab three times a week for six weeks. He had to re-learn how to walk, talk, eat, and do all the everyday functions we take for granted. With the Traumatic Brain Injury, he began having multiple seizures.

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In 2007, I stumbled upon Nich’s name online, through our high schools web page on MySpace. We were both coming out of unhappy and unhealthy marriages. I sent him a message saying “Hello do you remember me?” Surprisingly he did! We started talking a lot; learning everything about each other since our junior year of high school. We dated for a year and were married, February 17, 2008.

I knew, about Nich’s horrible accident before we got married, but I couldn’t have fully known what my responsibilities would be as the wife of a TBI survivor. You can’t prepare for things you’re going to have to deal with until you’re actually living with that person on a daily basis.

Nich has had two major grand mall seizures since the accident, but he suffers from petite mal seizures almost daily. He’s currently on three different seizure medications, all at maximum dosages, which keep the seizures at bay for the most part. A year and a half ago, Nich blacked out, fell and hit his head in the shower, causing another concussion. Two days later a golf ball size hematoma showed up on his head, and he started throwing up. The concussion caused his seizures to become more prevalent again. His driver’s license was taken away and since then, he’s had some major setbacks. He often forgets how he got from upstairs to downstairs. He has fallen down our staircase due to another black out.

I could’ve never expected many of the things we’ve had to deal with the past six years, but I don’t regret a single second of it. It’s taken a lot of patience and understanding. I’ve had to learn how my husband’s brain works. I’ve had to change my expectations and how I do and say things to him.  Nich is one of the strongest people I’ve ever known.  He is loving, kind and compassionate. He says what he’s thinking, when he is thinking it. He is romantic, sensitive, and takes great care of me and our three kids. He constantly puts our needs before his own, and is always seeking ways to make others happy. I feel so lucky to have my husband at home with our kids every day; he’s a tremendous father. I feel so blessed to be married to my best friend who helps me appreciate the little things in life. I try to be thankful for what we have, and try not to stress about the things we don’t. My husband and I look forward to every day we get to spend together.

It’s true, I wouldn’t have married that “boy” I knew back in High School, but the man I know now (post TBI, and accident), is the love of my life.

 

Part 2

Originally published February 23, 2014

From the time of the car accident in 1999, Nich has gone from one job to another.  Having a brain injury makes it extremely difficult to do even the most mundane jobs. He can “land” the job, but keeping it is a whole different story. For the last 5 years, he has been our stay at home parent, while I work outside the home. There are days he struggles with the fact that he can’t work.  He’d love to be able to provide for his family and goes through ups and downs of feeling helpless. As often as I tell him that being a stay at home parent is more demanding than most jobs, he still has a hard time realizing he can’t hold down a normal job, or work a regular 40 hour a week job – it’s not physically or mentally possible.  Having him stay home with the kids has its definite advantages!  One of the side effects of his brain injury is OCD; it comes in handy when he does the cleaning! To me, his “job” is priceless.

Emotional insecurities are another struggle.  Almost everyone that Nich was close to at the time of the accident, are now gone.  People have a difficult time understanding what he goes through and deals with on a daily basis.  When you look at my husband, you see a “normal” looking person; nothing stands out, or screams “I have a brain injury!”  They are quick to judge, quick to think that he is lazy or unproductive, quick to think that he is ‘normal’ and should be doing everything a ‘normal’ person is doing. Many think his brain injury miraculously healed because they can’t see it.  It’s hard for people to remember what he went through, and what he will be dealing with for the rest of his life. Since the accident, Nich sometimes doesn’t know how to feel, and has a hard time expressing grief or sadness. There are times when he knows he should be sad, or cry, but he can’t.  There isn’t a day that goes by, that he doesn’t think about the accident, or about his best friend Melissa.  It’s taken Nich years, to try and learn how to deal with his emotions of grief, sadness, loss, guilt, anger, and resentment. It’s still a work in progress, but he’s making improvements.

Life feels lonely and secluded at times.  So many people have refused to take the time to understand what happened to Nich, or care about what is currently going on with his brain injury.  Sadly, the people in our life (with the exception of his sister Amanda – who has remained such a close friend to Nich) have failed to remember the trauma that Nich’s brain and body went through; that it is something he will be dealing with for the rest of his life.  We have ourselves, our three amazing children, and Nich’s fantastic neuropsychologist (who has been a true lifesaver time and time again). We don’t have outside help. It’s very exhausting at times, both emotionally and physically. I wish I could quit my full time job, stay home with the kids, and be a full time caregiver for my husband.  Then I wouldn’t worry and stress so much when I’m away, and could be more helpful around the house. I also wish I could help him realize we will never abandon him and he will not be alone.  My goal is to help others realize what he deals with every single day, and understand that his brain injury won’t just magically go away.

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Our kids have had to grow up a little faster than we wanted.  They know their Dad’s brain isn’t like everyone else’s, and he struggles with things most people don’t.  They have to be patient and explain things more than once. They can’t always go outside and play when Dad has an “off” day. If I’m at work, they have to stay home and play inside, so they can keep an eye on Dad. Because he can’t drive, they have to walk a lot in the summertime (a good thing!). They know that Dad doesn’t remember things (no short term memory), and has A LOT of doctor appointments!  Sometime they wonder why Dad isn’t laughing with them when they watch movies and something funny happens. When we go on vacation, they feel bad, because Dad can’t always participate in everything (like ride all the rides at Disneyland); he has to sit on the ‘sidelines’ watching.

The kids know Dad loves them and would do anything for them. They have him wrapped around their little fingers! If they ever want something, they ask their Dad first; if they have any problems they deal with Dad, rather than wait for me to come home. Dad is the fun parent. When he’s feeling okay, he’s the one who will play basketball, video games, walk to the store to buy treats with them. Dad is the one who begs and pleads with me to let them stay up late, and go to school late on occasion.

Having a brain injury has completely changed my husband. I can’t honestly say that the struggles we deal with have gotten any easier over the years—they’re just different struggles now.  Even with his injury, he is an amazing, wonderful, astonishing husband and father; I couldn’t hope or want for anything more. Knowing all that I know now, I’d still marry Nich in a heartbeat.

 

Update

Originally published September 28, 2014

There have definitely been a few changes in our lives [since part 2]. Unfortunately, Nich’s seizure activity has become more frequent, more severe and the recovery time has increased substantially.

In June [2014], the neurologist that Nich’s seen since his car accident in 1999 retired and the entire practice closed. To make things even more difficult, they didn’t have any recommendations or referrals. After seeking advice from Nich’s neuropsychologist and our good friend “Google”, we were given the name of one of the top neurologists in Utah. The doctor reviewed his 15 years of files and decided to take him as a patient.  With epilepsy increasing in activity and severity, we discussed some different options. We’ve decided to go with a VNS (Vagus Nerve Stimulation) Therapy, which is basically a “pacemaker for the brain”. During the surgery, a small device is placed just under the skin up near the collarbone, and a wire runs from the device up to the vagus nerve in the neck. A special magnet held near the device triggers it to deliver a burst of stimulation, outside of the regular programmed intervals. For people with warnings (auras) before their seizures, activating the stimulator with the magnet when the warning occurs may help to stop the seizure. For the most part, he’s able to “sense” approximately 75% of his seizures.  We are hoping and crossing our fingers that the VNS will help in decreasing his seizure activity, as well as helping the recovery process afterward. The surgery is scheduled for October 10th [2014].

As Nich’s caregiver, I’ve had to learn to cope with the ever-changing and increasing seizure activity. It’s been really emotionally and physically exhausting. I have felt so helpless at times. If you’ve ever had to watch someone go through a seizure, you know exactly what I’m talking about. I have such a hard time leaving him when I have to go to work each night. I feel like I’m abandoning him as I back out of the driveway. I wish I could stay home to take care of him full-time and do more to protect him. My heart breaks a little bit every time Nich calls me while I’m at work crying, not knowing what just happened and why his entire body hurts. I want to run to my car and drive straight home to comfort him. I hate seeing my husband, my best friend, my whole world, scared and in pain.

Last month our daughter, McKenzie, actually witnessed Nich having a seizure. Even though we’ve talked about it a million times and have gone over “instructions” on what to do, she admitted that it was scary to see her Dad like that. Later that night, I talked with her and explained everything that had just happened. I walked her through what to expect when Dad has a seizure. It helped her to realize what a seizure really looks like, instead of just hearing about it. Now that she’s seen it, she isn’t as scared anymore.

Coping with being a caregiver can be difficult at times. One of the ways I cope is through writing.  I love to put my thoughts onto paper. I may not share them for the most part, but it seems to help. I love reading. I love listening to music. I’m that lady in the car on my way to work with the radio blasting, singing to myself. For the most part, the only time I really get to be by myself is during my shower, the drive to and from work, and of course the bathroom! I’m still trying to find more ways to cope and get things out instead of letting them build up inside. I admit I need to do a better job of taking care of myself. I need to sleep more, work out, eat better, etc. I need to make time for myself, even if it’s just 30 minutes to read or take in a movie, taking time to rejuvenate, so that I have the energy and strength to care for those I love. I don’t know how, but I need to somehow find the time.

I’ve been a little lost along the way in the form of support. There aren’t very many people I’ve come across who can even remotely understand what I’m going through. My husband found the perfect quote online the other day. “The emotional and physical abuse your body goes through having epilepsy is almost impossible to explain to anyone who doesn’t have it themselves. It’s frustrating trying to explain the overwhelming emotions you have right after a seizure.” This is the same for those of us who have to watch a loved one during and after a seizure. It’s not easy trying to explain to people what we are dealing with or going through.

Being a caregiver has truly been an extreme blessing in my life. Yes, it is tremendously challenging and can sometimes push me to the limits.  However, it is also abundantly rewarding.  I love taking care of my husband. I’m proud of my family and what we do for each other. I love knowing I am here for him when he needs something. I am grateful for the lessons my children are learning.  They are becoming so responsible and so grown up. I love that they worry and get concerned. I love that they can now pick up on Dad’s “bad days” and know when he’s just simply “off”. They put others before themselves.They pick up the slack and chip in whenever they can. I couldn’t have better kids!

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Earlier this month, I wanted to do something to connect with my husband and to show him how much I truly love every part of him and to remind him that I married him “in sickness and in health”, so I designed a tattoo. We went together and got our tattoos of purple and green ribbons. The green is for TBI (Traumatic Brain Injury) and the purple is for Epilepsy.

Nicholas is truly an amazing person.  He is one of the strongest people I know. I admire his drive and passion for life; he honestly never gives up! No matter what cards he’s dealt, he always finds his way through the challenges. Nich is such an incredible father and is constantly making sure that the kids and I are happy and have everything we could ever hope or ask for. I couldn’t ask for a better partner in life. I love knowing we get to spend the rest of our lives together. I am proudly a Caregiver for life.

To continue to follow Nich and Jamie's journey, follow them at @nich_sorensen and @jamiesorensen81 on Instagram.  Connect with more brain injury survivors on the YouSoRock Facebook Support Group at https://www.facebook.com/groups/yousorock.

Lauren So Rocks

Every dancer relies on that almost-magical connection between their mind and body to authentically express their truth. But what happens when a brain injury severs that important tie? Read how Joe's NeuroNerd podcast co-host, Lauren, opens up about a traumatic accident that sidelined her life in order to heal, recovering both her health and her dance again.
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One year ago, I was on a personal high: I had just medaled in the U.S. National Pole Championships, a big New York City publishing house was showing interest in my fantasy fiction novel, I had multiple real estate deals in process, and I was in the best physical shape of my life. On my way to a client’s open house, I watched in my rearview mirror as a car plowed into the back of mine in the middle of a busy freeway; I had slammed my head hard enough that I was disoriented for hours. 

At first, I brushed it off—it was whip lash, it was stress from dealing with the insurance company, it was insomnia from all of my projects. It was not until I was teaching a belly dance class three days later that I started babbling, I lost vision in my right eye, and I ended up vomiting the moment I got home from the most head-splitting headache I had ever had. The reality of a traumatic brain injury quickly became clear. My doctor told me to take time off from training (I was dancing, teaching, and training 6-7 days/week) and “try not to think.” I laughed. He leveled me the most serious look and said, “No, try not to think, don’t read, or talk too much.” I was floored. I’m a writer. I’m a teacher. All I do is think, read, and talk. I soon found out that the 24-hour marathon migraines were real, the pickaxe-like spasms in my head from opening my email were real, and the difficulty to focus while driving was real.

My recovery was slow, and it got worse before it got better. After four months, my physical symptoms tapered off, but I found my weight creeping up and my strength slipping away. My ability to handle stress dissipated to almost nothing. I started having anxiety attacks and felt my self-confidence dwindle.

I wish I could say I found solace in my dancing, but I didn’t. It instead became a constant reminder of what I could no longer do. I felt so isolated in my misery. I felt betrayed by my own body for limiting me in every way it could—working on that Russian Layback into a Brass Bridge on spin pole? Not anymore. That 180 degrees split? Poof! Can’t focus long enough to relax into the stretch. Tell my teacher how much I’m really struggling? Yeah, right. I often ended up in a ball on the floor, fists clenched and tears of frustration blurring my vision that I refused to let fall. What the hell was wrong with me?

By this time, the publishing house was incommunicado and my real estate deals had ended disastrously. I’d hastily penned an email to Pole Sport Organization and withdrew myself from the Pacific Pole Championships; that was the first time I ever withdrew from anything and I was ashamed. I still taught and coached, forcing my enthusiasm for my students, but I would freak out on the drive home. Who was this person, because I sure didn’t recognize her?

After a particularly serious bout of anxiety that resulted in me curled up, black mascara streaking my cheeks, and a furious googling session, I discovered Post-Concussion Syndrome. The healing of a traumatic brain injury is anywhere from six months to three years, with a frightening number of psychological issues attached. A sense of relief filled me when I realized I wasn’t crazy; my brain was just healing. Suddenly, having a logical reason for my irrationality gave me permission to allow patience and kindness for myself without guilt. 

I felt like I could take a deep breath again while stretching or in my tricks, even signing up for a new challenging pole class. My pole free-dancing began to feel less like a battle and more like the therapeutic outlet I needed, full of tears and laughter. I looked at my calendar and declared my intentions to compete in the 2017 regional and national PSO competitions. I could dance again.

It was 11 months after my injury that I was driving home after teaching and gushing on the phone to a friend about this new idea I had for a dance show—fusing heavy metal, hip hop, and dance styles. She interrupted me mid-sentence and with a gentle voice said, “You know, this is the first time you sound like yourself in a year.” My reaction was immediate; sitting in traffic, I broke down crying because it hit me—she was right. It was the first time I felt eager and excited for something instead of dread and apprehension. My creative juices were flowing without judgement or doubt. Dance was no longer the grim reminder of how far I had fallen off-track but my source of inspiration. 

Am I 100% recovered? No. I still struggle with random anxiety attacks, my decreased stamina, and I’m far more timid than I have ever been. Even working on this piece stirred up some apprehension—the thought of publicly telling people Hey, this is what not-SLAYING looks like is a scary thought.

However, I learned lessons I might not have gotten to for a bit without it. Healing is a process that takes time, no matter how much I wish it didn’t. I can make peace with my momentary diminished physical skill and mental capacity with the realization that this is temporary. 

And quite possibly the biggest epiphany I had led to this entire interview: there is strength and positivity in vulnerability. As a dancer, my truth is expressed when I am present, honest, and open. Authenticity only shines when one is willing to put themselves out there, including the not-whole pieces, and brave the world. I am embracing this step in my journey with as much love and patience as I can to grow stronger. If my experiences and my subsequent sharing of them can help even one person know they are not alone in their struggle, that they too are not crazy, or that they too can be vulnerable, then it makes everything worth it.

To continue to follow Lauren's journey, follow her at @laurenlmanzano on Instagram, @tankbbg on Twitter and connect with her on the YouSoRock Facebook Support Group at https://www.facebook.com/groups/yousorock.