Recently I saw a post on social media that said something like “I apologize if I was ever the toxic person in your life, but I’m working on becoming a better version of myself” and it just hit me hard. Looking back at my life, I realize I was that toxic person. I wasn’t hurting the people around me, at least I don’t think so, I just had a lot of negative energy. I realize now, I was carrying the enormous weight of emotional trauma and insecurities from my youth that I wasn’t fully mature enough to process or manage. It had become a quagmire of pent up negativity that I often seemed to blame others for and let it dim my light. The funny thing was, I preached positivity and spoke often about the need for it and the importance of it, but I couldn’t muster it in my own psyche. My well was dry.
That post made me realize how much things have changed in the four years since my aneurysm has ruptured. My perspective on life has shifted. And, while, one would expect such a change to occur after a near death experience, I think it goes deeper than than that. I feel this glow from inside of me that wasn’t there before…or rather, it was, but it was clouded by a window covered in soot. The light couldn’t get out. In the past, I think my light gave up trying. I was stressed, tired, angry…life got in the way. I gave up. And I let that happen.
It’s no surprise that brain damage changes a personality. Sometimes it’s for the better, sometimes it’s for the worse. For me it has been this metamorphosis of balance and peace that I never thought possible. My mother used to always tell me that I was extremely high strung. I think her exact words were that I was “wrapped around the axle”. I have always been a Type-A personality and never been able to truly relax. I had no idea about that concept. I used to say that I never knew how to have fun. When we would go on vacation, I would have a folder with the itinerary of each day planned out. It wasn’t specific down to times, unless there were tours, but each day was scheduled. Now, everything is different. We went on vacation last year and my husband asked what we were doing one day and I said “whatever we wanted”. I’ve stopped planning my life and started living it.
It’s been no secret that I have had a lot of medical issues following my rupture. My challenges are significant at times. Better than a lot of survivors, worse than others. Life isn’t easy. It isn’t what I wanted. There are days I have temper tantrums. There are days I ask God why he saved my life. But when it truly comes down to it, I’m grateful for my aneurysm rupturing. Yep. You read that right. It doesn’t seem like something anyone with any sense would say. But here I am saying it (although some that know me may say I don’t have any sense, but that’s another story entirely). My reasoning is simple…I’m no longer that toxic person. Oh, don’t get me wrong, I am still passionate about certain things…politics, sports, social justice issues. And I’m still going to get all fired up about those things, but I hope that my positivity outshines the negativity that I feel about the world sometimes.
I’ve learned to deal with the issues of the past and truly forgive, not just lip service, but true forgiveness. I’ve even learned to be a little easier on myself…not much, but a little. I look at the world realistically with the positivity of the future…with the beauty of each moment that exists right in that space in time. It may not be perfect, but it’s what we have and I promise you there is something beautiful right where you are standing.
So if I was ever that toxic person in your life, I apologize…I’m working on becoming a better version of myself…someone I like a lot better.
Trauma never really goes away, you just learn to live with it. Some days it feels like I’m living in a tense hostage situation and other days I feel like it’s simply a roommate I navigate life with, dancing through a too small space to avoid bumping into each other. My four year anniversary of my ruptured aneurysm is today, April 14, and I don’t understand how it can be both simultaneously ALREADY four years and ONLY four years. Time and trauma are funny that way.
It took me a long time to reconcile the fact that I was still alive and that I deserved to be alive. And to be honest, some days that’s still a struggle. There are days when I don’t want to be alive either. Those days have become fewer and my resolve has become stronger, even as we have discovered more problems. I believe I survived for a reason and I intend to make the most of this second chance. I struggled so much at the beginning of all of this after losing my career and trying to figure out what I was supposed to do with my life now. How do you suddenly pretend that life didn’t exist? I knew that I wanted to help the aneurysm community so that’s what I have set out to do.
I started my blog as part of my own recovery, but also to help other survivors and to help educate others to understand what we go through, what risk factors to look for, and how to help the community. I wanted to do more though…so I wrote a few articles for some other publications. I’ll admit, that was exhilarating to me. I love to write and it helps my healing. There was still room for more.
This year, for the first time, I participated in Advocacy Day at the Capitol. I had planned to do it two years ago, but it was canceled because of the pandemic. I was scheduled to meet with members of Congress from my state to discuss support for Ellie’s Law and share my story about my aneurysm. I have shared my story so frequently that I thought it would be easy, and while it was easy, it was mentally exhausting. It sapped all of my energy. The event was both terrifying and the most fulfilling thing I have ever done. It made me feel more alive than I have in years. I realized, without question, that this is what I have been called to do.
I am already working on plans for smaller events locally to educate and raise awareness and I know it won’t be easy, but nothing worth it ever is. I was saved for a reason and on this anniversary, I am not going to question why I am alive. Today I am remembering that day I woke up from my coma and heard those words whispered in my ear as I sat alone in my hospital room…”Be still and know that I am God” and I am living with purpose and gratitude.
Be well, my friends. Go shine your light on this world.
April 14 has new meaning to me now. Each year, as it approaches, I am reminded of how my life has been forever changed and how I am beyond blessed. Since my aneurysm ruptured on April 14, 2018, my life has changed in ways that I could never have imagined. Each year since has brought new challenges, frustrations, fears, anger, growth, and promise. And through it all, I have somehow managed to find a peace that was missing in my life prior to this disaster.
I struggled with defining myself after being declared unable to work. Who was I if I wasn’t an IT Leader in Supply Chain Process Improvement? Who was I if it didn’t say “Project Manager” after my name? It was an obstacle that was impossible to leap. I couldn’t just be someone else…even when my brain refused to do the job anymore. I had a list of medical problems that seemed to grow daily, and yet the definition of who I was is the thing that bothered me most.
I knew who I wanted to be. I wanted to help others. I wanted to walk back into the flames carrying water for others who needed the help. But when I looked in the mirror, I didn’t believe that I had the capacity to help others. I wasn’t strong enough, knowledgeable enough, and where would I even start? But even before my aneurysm, I had always talked about feeling as though there was something missing in my life. I wanted to help people. I wanted that to be my life’s work. I started tweeting about awareness. I started sharing statistics. And finally, some amazing people jumped into my life and asked if I was ready for advocacy.
I started writing my blog to share my experiences with my recovery because, while every recovery is different, sometimes survivors need to know they are not alone. Sometimes, survivors need to see that a symptom might match theirs and maybe their care team hasn’t looked at it the way mine has…or maybe they just want to know that other survivors have bad days and cuss and throw things too (believe me, I do). I’ve also been extremely blessed to write for a few publications to share my perspective to get my voice out there even further. And I have been honored to help a few families whose loved ones were in the hospital following an event when they have needed support. That has been an extremely humbling experience to be trusted with their hearts as they navigate this new journey.
I may not be changing the world, but with each action of advocacy, I realize that my heart is full and I have found a peace that I never had during my career. Oh, don’t get me wrong, I still struggle and have my moments of wishing for my “old” life, but that wish is nothing more than longing for a life that isn’t filled with the complications of daily migraines, seizures, hypothalamus dysfunction, and whatever other medical problems they want to throw at me. There are moments of weakness when I just want it all to go away…I am human, after all. But when I really sit and think about it, three years ago, on April 14, 2018, I was not only given a miracle of a second chance at life, I was given a miracle of happiness.
I have been absent lately. I haven’t published for awhile and several folks have reached out to me wondering where I have been. Honestly, the last few months have been rough for several reasons, but one thing I have learned is that sometimes you just need to step away and take care of yourself. For the first time, I listened to my body…and my soul…and I took some time for me. Sometimes life hits you hard and amidst it all you need to listen to the voice in your head that’s telling you to slow down. But I’m getting myself back into the mode of fighting for survivors and sharing my story.
It was February 21, 2020. I’ll never forget that date. My mom was lying in a hospital bed at home and we knew she didn’t have long. I was headed up to be by her side. We had already said our goodbyes privately by phone earlier in the week and she left me a voicemail so that I would always have her voice to listen to on tough days. I woke up that morning and steeled myself for the long days ahead. I knew this was going to be draining…physically and emotionally, but I needed to be there for my dad, my siblings, and her.
We left the house and stopped at Chik-fil-A to grab some breakfast before driving the three hours “home.” We had already been through this journey with my mother-in-law years before my aneurysm, but that was unexpected. My mom had fought lung cancer valiantly for two years and took a quick turn just in the last month. When we got to the restaurant, I stood in line and noticed I was feeling…off. My legs felt like concrete and rubber at the same time. My husband had to prod me forward to the counter to order. As I began to order, the words wouldn’t come out and things were slow and seemed to slur from my mouth. I just looked up at my husband terrified. He looked at me questioningly and ordered for me. The unspoken thought between us was that my brain was overwhelmed with the grief and stress that was coming. Add stress to brain trauma and things get even more challenging.
I recovered quickly and walked to a booth and sat down. Our food was brought over and we ate in relative silence. I sat staring out the window over my husband’s shoulder, watching the steady stream of cars go past. In a blink of an eye, he was a mile away as the wall behind him pushed away and his voice trailed off into a tunnel. Suddenly sound was distorted, I was shaking and nauseous, and I heard a voice come out of my body that was unrecognizable say “honey, honey, there’s something wrong” and in that moment, my head dropped back and I lost consciousness.
I regained consciousness in what felt like hours later, but what was actually mere seconds. My husband was asking if I was okay. My hands were still shaking pretty badly, but everything else was returning to normal. My vision seemed restored. My hearing was back to normal. I was no longer dizzy or nauseous, although I had no desire to finish my breakfast. My husband asked if I could walk and get to the car. I told him I could and I took his arm for stability. He got me loaded into the car and he got into the driver’s seat and he asked “where do you want to go?” I gave him a weird look and said “mom’s”…as if there was any other option. He looked at me as if I had two heads and said “we’re going to a hospital…which one? I’m sorry but you have to go get a brain scan”. I was furious…muttering under my breath like a teenager angry with a parent. I sat there in the passenger seat with my arms folded across my chest muttering under my breath something along the lines of “you and your damn brain scans.”
We arrived at urgent care and they took me back immediately because of my history. They did a brain scan before even getting me into a room. The scan came back normal but blood work showed an extremely low level of potassium. They were concerned about a possible heart attack and transported me by ambulance to a hospital for care. I kept asking if this is what caused the episode in the morning and everyone just kept saying it was concerning. After the entire day, several pills, and 4 bags of potassium infusions, they sent me home with orders to follow up with my family doctor. I ended up on prescription potassium pills because no matter what we did, my potassium just wouldn’t stay in the normal range.
I continued to have strange feelings. It seemed to be monthly that I’d have an episode like the one that day at Chik-fil-A. In between those big events, I’d have other issues like feeling I was floating as I was walking or, even more strangely, suddenly feeling like I didn’t fit inside the space I was occupying. I had mentioned to the doctors early on in my recovery about some of the unusual feelings but I never really pressed it and it was just assumed that this was just part of my recovery. So often, I kept these things to myself because I felt like a hypochondriac. It always seems like there is “one more thing” and I hated feeling like I was crazy…or that they thought I was. However, as time went, all of these things started to bother me more. I began to ask more questions. I began to press for answers.
When I pushed on my neurology team, they thought it might be my heart and wanted me to talk to my family doctor. But as they heard more of my symptoms, they decided the best course of action was to send me to an epilepsy specialist for evaluation and possible EEG. My epilepsy team worked quickly to find an answer. I was scheduled quickly for a five-day video EEG stay in the hospital. It’s funny that the moment it was scheduled, a wave of fear washed over me. Perhaps ignorance really was bliss. Maybe I was better off just staying completely unaware of any problems.
Since my episodes seemed to be monthly, my doctors weren’t really convinced that we would catch anything on the EEG. We would need to be extremely lucky to catch that monthly occurrence, but we were going to try. We were all just hopeful to get some answers so that I could get the treatment needed to improve my life.
When I arrived at the hospital, they got me settled into my room and began to connect me to what felt like thousands of wires. I was beginning to understand why Frankenstein was so angry. Because I was in the epilepsy unit, I couldn’t get up on my own. I was considered a fall risk because of the seizures so anytime I needed to go to the bathroom I had to call for a nurse. Anytime I wanted to sit in the chair, I had to call for a nurse. I couldn’t even let my husband help me. It had to be the nurse.
Once I was all hooked up and the cameras were active, it was fascinating to see how the EEG reacted to the simplest tasks like me chewing, laughing, smiling, or rolling my eyes. Every task was captured on the monitor. Each motion was emblazoned on the screen and captured for the doctors to review. It was fascinating and creepy. I felt like a baby who just discovered their toes. I kept making faces and talking and moving so that I could watch the machine react. I’m sure the technicians watching were wondering what was wrong with me. I’m apparently just easily entertained. The newness eventually wore off and I settled in and watched tv and played games on my phone to pass the time. It was going to be a long five days.
That first morning, the doctor came in and told me that they didn’t capture anything but not to give up hope…we were just at the beginning. Somehow that didn’t reassure me. I wasn’t feeling very optimistic. The days were long and boring. I couldn’t move around. I couldn’t have visitors because of COVID-19 so it was just me and my husband. He was able to work. I was bored out of my mind. The doctors decided to try to encourage seizures through sleep deprivation so they asked me to stay up as late as possible, but at least until 2:00 AM and no napping during the day. So day 2 became an even longer test of my abilities to keep myself entertained.
I managed to stay up until after 3:00 AM before finally falling asleep and, as is always the case in any hospital stay, I was up early because of the constant barrage of interruptions. When the resident came in that morning he told me that although I didn’t have a seizure, I did have a “pre-seizure”. He told me that the doctor would be in later to discuss. I was so excited because I felt like maybe we were finally on the verge of getting answers and that’s all I wanted.
When the doctor arrived with an entourage of students, I mentioned what the resident said that morning and it turns out that isn’t really “a thing” but apparently what he meant was that there were some indications that a seizure was starting but never fully formed. They wanted to try another night of no sleep. They wanted me to go longer if possible…which meant my exhaustion from the night before was only going to get worse. I understood the point of this, but it certainly wasn’t making me happy. I was becoming irritable and annoyed. I didn’t like being a guinea pig anymore. I didn’t care if we got answers. I just wanted sleep and to be left alone. But I signed up for this.
That night I pushed myself to stay up later. As the hours ticked slowly by, my exhaustion hung in the air. I could barely keep my eyes open after the night before and staying awake all day. The neuro fatigue was brutal and I finally collapsed. I have no idea what time I finally gave up, I just knew I couldn’t go anymore. I swear I only slept for minutes before early morning came and my next neuro check.
The medical team began to trickle in and the doctor sat at the foot of my bed. His easy bedside manner put me at ease as we walked through a battery of questions. He wanted to understand my symptoms in the past. He pressed for every detail that we could remember. He explained that they have not been able to catch an actual seizure while I was there. They were able to catch several blips that could indicate a seizure may be about to form, but never did. But, most importantly, everything I have been telling him and other doctors about my events, indicate frontal lobe seizures and it correlates with the location of my aneurysm. He wanted to try me on seizure medicine to see if my symptoms improved. Basically, it was our best opportunity to prove our suspicions without keeping me in the hospital indefinitely.
He also diagnosed me with Alice In Wonderland Syndrome (AIWS), which I swear he made up and was making fun of me…did he think I had a Cheshire Cat too? As I sat there waiting for the punch line, he explained. Essentially, it is a condition where your visual perception is altered from reality. At first none of this sounded familiar, but as we continued to think more about it, pieces started to fall into place. My husband remembered that while I was recovering in ICU, I asked multiple times if I was in a “normal sized” bed because it seemed like I was too big for it. There were also times when I would walk into a room in our house and feel like the ceiling was coming down on me. Or that I was floating when I was walking. Or that the walls would push a mile away. All of these were things I never mentioned to doctors because they seemed silly…or crazy. I was so afraid that the doctors would look at my never ending list of ailments and think I had to be making this stuff up. So I suffered silently. He said that the seizure medicine should help these episodes too. He warned me to be patient as it often takes time to get the right dosage for seizure management, but we’d get there.
I was near tears. It may have been the exhaustion, but it finally felt like maybe we were getting some answers. On the flip side, that also meant that there were more problems. It was something I continued to struggle with…before my aneurysm, I had no health issues. I took no medications. Since that fateful day, I have typed lists of medications and illnesses because there are now too many to remember. It’s amazing how drastically things can change in an instant.
I never thought much about mental health until my aneurysm ruptured. I knew there was a stigma around talking about it openly, although I didn’t understand that attitude. I had used counselors before when I sought treatment for an eating disorder, but I hadn’t thought about that in more than two decades.
It didn’t take long into my recovery before I noticed my mental state was different. When I left the hospital two weeks after my aneurysm ruptured, we knew there was a chance that it could rupture again. The shape of the aneurysm prevented the surgeon from putting the platinum coils clear to the tip of the bulge. We were told that I would either need another surgery to put a stent across the neck or we could monitor it every 6 months through a procedure called an angiogram. The surgeon said that if left alone, it could potentially rupture again, but that could be 4 months from now…or 40 years…or never. That information planted a seed of fear, right next to the seed that was planted unknowingly the day my brain exploded.
As I began my recovery at home, I tried to ignore the nagging thoughts about another rupture, but every headache sent me into a panic. I’d never had an anxiety attack before, but it became yet another companion in my new life. I had flashbacks of the day of the rupture. I felt the hot knife that seemed to pierce through the top of my head that day. It felt real and it terrified me. These flashbacks hit unexpectedly and hard. I would cry, I was irritable, and I’d pace the house at night waiting for death to come for me. I fretted incessantly about why I was alive when so many others had died. I struggled to understand my new world.
I remember my first trip out to a restaurant with my husband and needing to use the restroom. I got to the door of the bathroom, but I couldn’t go in. There was a knot in my stomach. I broke out into a cold sweat. A sense of dread overwhelmed me. I went back to the table and told him that I wasn’t feeling well. We quickly left the restaurant and as soon as we got to the car, I burst into tears. My husband was panicked. Did my head hurt? Did we need to go to the hospital? What was wrong? I asked to please just go home. It turns out, my brain now associated public restrooms with the source of my trauma. My aneurysm ruptured while I was standing in a bathroom with my sister as we were getting ready for my niece’s bridal shower. I was now afraid of public bathrooms and it was debilitating.
I was also constantly asking why I survived. What did I do to deserve to still be here? What made me so special? It plagued my thoughts constantly. I’d go to my doctor appointments and I kept hearing variations of “do you know how lucky you are to still be alive?” I’d hear it from the nurses, the front desk team, and even the doctors. It was like a knife to the heart every time. It seemed to cement that belief that I truly shouldn’t be here. That I wasn’t worthy of surviving.
My husband suggested that I talk to someone. I knew he was right because I was a complete mess. I reached out to countless therapists trying to get an appointment. Wait times were as long as 9 months to get an appointment. I finally found a psychologist who didn’t take insurance, but could see me that week. I was willing to pay anything. I needed help and I was desperate. At my first appointment, he suggested I find a therapist who practices a therapy called EMDR to help me with PTSD. He also prescribed a medication to help me with the flashbacks that were consuming my life. We then began to dig in to the survivor’s guilt.
People didn’t understand what I was going through. I was talking to a group of friends and mentioned how I was struggling with the question of “why was I still here?” One of my friends seemed shocked and told me I was being ridiculous because if he had cheated death, as I had, he’d be celebrating. That clear dismissal of my fears was heartbreaking. I felt like I was knocked down all over again. Maybe I was broken even worse than I thought. On top of everything else I had been through, now I thought there was something wrong with me mentally and I began to withdraw because I was afraid of what people would think…even the people who were supposed to love me. I felt so alone and adrift. I was trapped in a mind I no longer understood, dealing with a body that failed me in a way I still couldn’t quite process. I bottled these feelings up. I pretended everything was normal. I told people I was “fine.” I held it together every week until I reached the sanctuary of my therapist’s office when the cracks in the dam opened like giant fissures and the fears, doubts, and tears came spilling out to swallow me into the darkness.
Therapy was the best decision I ever made. We dove into every aspect of my life so that she could understand me. And, ultimately, so I could understand myself. I felt safe for the first time in a long time. She didn’t laugh at my fears or tell me that I was ridiculous for having them. In fact, she told me everything I was going through was to be expected given what I experienced. We jumped into the EMDR therapy and I learned techniques for managing my PTSD. Techniques that I could easily replicate in public without drawing attention to myself. I’ll be honest, it hasn’t worked as effectively as I had hoped, but it did get me past my fear of bathrooms (most of the time). I do notice that when I am struggling with exhaustion or an extreme headache, the PTSD more easily controls me, versus the other way around. But I continue to work on it.
My survivor’s guilt is a bit more challenging. I still hear statements from healthcare providers that make me cringe. Nurses who call me a “miracle” and want to hug me, even though they’ve just met me. As if, somehow, my luck will rub off on them. It is painful. It is excruciating when I meet family members who have lost a loved one and I feel like I should apologize for living when their loved one was taken before they were ready. How can I justify my surviving and even thriving, when they are trapped in the grief that my family escaped? When I hear stories in the news about aneurysms, my heart stops. Recently, Grant Imahara died from a ruptured brain aneurysm. In the days leading to his death, he complained about bad headaches, neck pain, and numbness/weakness. These are all symptoms but he didn’t know. Why didn’t he get to survive? Surely he has more to offer this world than I do.
These thoughts come crashing back so easily. I can quickly drown in the darkness. My saving grace is to remember that I have dedicated myself to helping others through advocacy. I don’t understand the universe or why God saw fit to save me. I don’t know if advocacy is my destiny or if there is something else out there, waiting around the next corner. What I do know is that I do have a purpose. And for now, my purpose is to emerge from the flames carrying water for others who are consumed. The battle with my demons isn’t over. I can tell my story without sobbing, but I still have days when I am overcome with fear, anger, uncertainty, and panic. I am a work in progress. But we, as a society, have more work to do too. We cannot continue to ignore the importance of mental health. We cannot make jokes and mock those who admit they need help. We don’t dismiss people who have cancer or diabetes. We have to learn that people’s feelings are valid and we should encourage each other, support each other, and nurture each other. And we certainly shouldn’t be ashamed to do all those things for ourselves either.
My closest friends often refer to me as a badass bitch. They say it with love…I think. Even before my aneurysm, I have been through a lot and always fought like a warrior. I’ve been through twelve knee surgeries, some absolutely brutal, including a total knee replacement (actually one of the easiest) by the time I was 40. The doctors were always amazed at how quickly I bounced back and pushed through the rehabilitation like it was a minor scrape. That’s just who I was. I pushed myself. I relied on myself. I closed myself off and trusted no one.
My very first knee surgery in 9th grade found me recovering on the couch alone during the summer, while my parents were at work. My dad would get me settled on the couch in the morning with snacks, drinks, books, and the remote. My mom would come home at lunch to get me to the bathroom (like a puppy being potty trained) and get me lunch. I wasn’t allowed to lift my leg on my own; it had to be slowly lowered to the ground. I was immobilized from the hip to my ankle. This lasted all of 4 days. By the end of the week, I had figured out how to hook my left foot under my calf of my right leg and swing that leg off the couch and lower it gently to the floor so that I could get up with my crutches and get more to drink or go to the bathroom. That trick didn’t go over well with my parents, but they knew they weren’t going to stop me. I had a stubborn and determined streak that ran deep.
That stubbornness and independence only got stronger as I got older. I learned early on that I could fight through any battle on my own. Asking for help wasn’t an option in my mind. People were selfish and unreliable. And I held myself to such ridiculous standards intellectually that I would rather search for the answer alone rather than let others know I didn’t know something. I believed I could only count on myself. So everything I did, I suffered in silence. I figured things out for myself…whether it was a physical task or intellectual. And I kept most people at a distance. I relied on my strength and my stubbornness to fight through. Even my doctors knew that if I was calling for an appointment, it was dire. And pain meds? Pfft…those were for the weak.
I expected so much of myself that I was often disappointed in reality. I’ve gone through life holding everyone to such excruciatingly high standards that failure was inevitable. I buried myself behind the highest wall I could build and kept everyone out. I believed I could only rely on myself in life. Over the years, I have let a few people behind that wall and into my tight-knit circle, but even then, I didn’t ask for help. I never wanted to be perceived as weak. Or “less than”. That image of perfection was everything.
And then my brain started to bleed. The pain was excruciating. It was unlike anything I had ever experienced. And when the doctors ignored the problem, I pushed through. I kept going to work, driving over 50 miles per day. I missed one day during that five-week period because I wasn’t missing work for a “headache”. And then it ruptured. And everything changed. Suddenly, I was living someone else’s life. Suddenly I wasn’t as reliable as I once was. I couldn’t even count on my own brain anymore.
The past two years have been an awakening. I’ve seen different sides of people…and myself. There is enough of the old me still here that doesn’t want help. It remembers pain of disappointment and the fear of feeling less than. And then there is this new person emerging from the wreckage of my trauma who no longer cares about what other people think. I’m not sure where the balance is, but I’m sure it’s there somewhere.
It’s been two years of constant doctor appointments. It’s been two years of figuring out this new life. It’s been two years of assessing my behavior. I was suddenly thrust into a life that required assistance. I can still do nearly everything on my own, but it takes a lot longer and it is exhausting, but I can do it. My struggles are even more apparent as exhaustion sets in and I don’t know how to handle things on my own. I’ve found myself trusting more people than I ever have in my life because of the loneliness of dealing with my damage. What I discovered was that the people in my circle often didn’t understand what I was going through. They couldn’t relate to the chronic headaches, the exhaustion, the visual disturbances, or the emotional trauma and guilt that was waging a battle inside of me. None of us understood the new found anger or anxiety. I needed some new people. I searched out other survivors. I searched out therapy. I searched out religious leaders. I opened my circle a bit.
Don’t get me wrong, I still struggle with trusting fully. That wall is still there, but now I’ve built a door. I let people play in the yard and I’m able to run back inside and shut the door when it becomes too much. There are a few new people that I’ve let inside. I let them kick back and relax with me…to see the real me. Sometimes I still have to pull away and lock the door to calm the anxiety, but every day I’m making progress. It’s not so much that I’m afraid of what others think of me now. It’s more I’m afraid of getting hurt. I’m learning that it’s okay to say “I need help” and it’s okay for them to say they can’t help me. It’s not personal. It’s not malicious. It’s not an attack on me or how they feel about me. And there is no weakness in admitting you need help. I’m learning how to live my life with my new limitations. My circle is learning about the new me too. And we are closer now because of this challenge.
Am I still a stubborn ass? Definitely. I’m not sure any of that will ever change. I’m just learning now that there is a difference between being stubborn and being stupid…if only I had listened to my mom when I was a teenager, and in my 20s, my 30s…well, you know…
If you’ve been following my journey, you’ll already know that I struggled immensely with survivor’s guilt. I had no idea why I deserved to still be on this earth, when so many others weren’t given that luxury. What did it mean? What was I supposed to do with this new found life? It was a hell of a dilemma that I struggled with. The thought of returning to my old job was gut wrenching, but the fear of failing at trying something new was just as bad. I was stuck in this limbo of breathing but not. Stuck without fitting anywhere in this world.
It’s a common struggle after any trauma, but for brain injured patients, that struggle is compounded by learning to process things in a whole new way. We are often very different people after these events. Our brains are physically altered and our thought processes change. It’s hard to just pick up where you left off. And that’s where I found myself. I was simply occupying space while my brain tried to reassess the world. For a former Type-A personality, it was an additional trauma on top of the brain damage! I was the girl who planned EVERYTHING. I organized my closet by color coding everything by ROYGBIV. Things had to be put away in a certain manner or I would have a meltdown. To say I was obsessive compulsive was an understatement. So here I was…trapped between my old life and my new life. Remembering that glassware had to be put away exactly so, but somehow having no clue where I was supposed to go in life. How ironic. I was an out of place glass with no cabinet.
So, in true Michele fashion…I read. Everything I could find about recovery. Everything I could find about reinventing yourself. I talked to therapists, friends, psychics (holy hell was THAT eye opening!). And I wrote. I poured my feelings out on paper. In the middle of the night, I’d sit with my phone and jot down random thoughts that made no sense to anyone but me…and quite honestly, if anyone had gotten ahold of my phone, I cannot imagine what they would have thought of my mental state in those moments! For once, I didn’t have a plan, and I definitely didn’t have my shit together! That was scary in itself and it took lots of conversations with my therapist to get me over the whole idea that I didn’t need to plan every single aspect of my life. It’s still a struggle sometimes as my old life often tugs at me to come back, while the new me is over here spinning in a field of flowers and getting lost in the beauty of the world.
So there I was, trying to figure out who I was. For 20+ years I defined myself by my career…I was a Project Manager, a Supply Chain expert, an IT Executive. That’s how I saw myself and I truly believed it was the only definition that mattered. That was who I was. End of story. It took this trauma for me to finally break through that wall and understand that those things were just who I was for part of my life. I was also a wife, daughter, sister, aunt, friend, artist, writer, photographer, random stranger who will talk to you in line because I want to make the world a better place, and a badass. There were probably a dozen other words I could come up with, but that was a pretty good start.
So now that I realized I had more to offer and I didn’t want to (and really couldn’t) go back to the grind of corporate America I needed to figure out what the heck that new me wanted to do. I knew I wanted to make a difference in this world. If I died (well, when, since that’s inevitable), I wanted people to say that I made a difference in their lives. That the world was left better because of my influence. Okay…so I want to put on a cape and save the world. Perhaps, I needed to narrow down that scope…just a bit. I realized how little I knew about aneurysms before mine ruptured. I never suspected the headache was a brain bleed. That thought never even cracked the top 50 for me. So I started digging because…well…project manager and Type A personality. I realized there was so little information given to us when we were in the hospital. My husband, who was my caregiver, was flying blind to a degree. He didn’t know what questions to ask. As the saying goes…”you don’t know what you don’t know”. And that’s how my dream of advocacy started.
I never do anything small. I’m a “go big or go home” kind of girl. It gets me into trouble a lot because I tend to bite off more than I can chew and never ask for help (that’s a story for another week). So there I sat, brainstorming ideas of how I could help in the community. I wanted to work with doctors/hospitals on education because my brain bleed was missed by 3 doctors/hospitals during that 5 week period and I never wanted that to happen to someone else! I wanted to talk to people in the community to educate them on the signs and symptoms of an aneurysm so that they wouldn’t be blindsided like I was. I wanted to tell my story. Okay…three BRILLIANT ideas. I closed that notebook and thought…I’m an advocate. Done.
Whoa. Hold on, Sparky. I think you need to actually figure out how to do all of these things. How the heck am I supposed to do that? I’ve never done anything like this before! The closest thing I’ve done is mentoring and leading the company’s United Way campaign one year. This was a much larger undertaking and I was completely overwhelmed. So I backed off on some ideas and decided to prioritize. Telling my story was really important to me and I talked to my therapist about my desire to write a book, yet I had no idea how to go about getting a book published. I decided to work on a blog (and here you are reading it). But “old Michele” crept up and put the fear of failure in my brain and I sat on the idea for a year, while making notes in my journal of things I didn’t want to forget. My therapist finally challenged me in January of this year to get off my ass and just start it…even if I was the only person who ever read it. I started a Twitter page for advocacy and began making connections. I reached out to hospitals and affiliated medical centers to work on plans for Aneurysm Awareness Month and got nowhere fast. Hmmm. This isn’t easy. Maybe I should force myself to return to corporate life? But every time I considered that, my anxiety increased, my blood pressure rose, and panic set in. That wasn’t who I was anymore. I had to remind myself (and I still periodically do), that greatness is found outside of your comfort zone.
So here I am, stepping outside my comfort zone. I continue to pursue my passion to help others in the realm of Aneurysm Awareness and Education. I am putting myself out there because I know I have a role to fill. It hasn’t necessarily been easy, but I can honestly say, for the first time in my life, when I am working on these projects, I am excited. It doesn’t feel like work to me. It feels like I have found my home. I have found that place where I am needed…and what I have needed to heal. Don’t get me wrong…I’m scared as hell that I am going to fail miserably. But I’m more afraid of regretting not getting involved to help others come out of the flames.
In the meantime, I will continue to try to engage the local communities and medical facilities to raise awareness. I won’t rest on my laurels. And I will watch myself grow into what I was meant to do. Who knew reinventing yourself is simultaneously extremely difficult and extremely rewarding?
For the record…my closet is no longer color coded by ROYGBIV. But the glasses in the cupboard are still perfectly aligned. Baby steps.
