I have been missing from my blog lately. To be honest, I’ve been missing from my life. Somewhere between there and here I slipped through the cracks into a depression that has left me roiled in a quagmire of ugliness and brutality that’s difficult to escape. I haven’t written because I didn’t feel like I had a lot to say. Or rather, I didn’t feel I had a lot worth reading. And to truly understand my mind, I need to be open about it because this goes deeper than my aneurysm and mental health is so important.
I swear I’m not going to take you back through an endless stream of childhood memories, but, I will say that I was born into a loud, busy, very large family, and yet I felt alone from the very beginning. I never fit anywhere…like I was the puzzle piece that was put in the wrong box and somehow got past quality control. It’s an emptiness that is easy to ignore…until you hit the bottom of depression and you realize there is soul crushing loneliness engulfing you at every turn. And lately, that’s where I live.
I didn’t notice the changes at first…the slowness to get out of bed in the morning. At first I’d stay in bed an hour after I woke up…then two…then three. Then it got to the point that I was crawling back in bed after lunch and blaming it on my headaches or saying that the cat wanted “to cuddle.” I mean, the cat DID cuddle with me, but it’s not like he asked me to get into bed. Then I was canceling plans with friends. I was turning down invitations to go places. I wasn’t eating healthy food. Projects would get started and left unfinished on the floor. Eventually, it got to the point where I was forgetting to take my daily medications. I was randomly crying at everything and then crying harder because I was mad that I was crying. My antidepressants clearly weren’t working.
I had read some stories about other aneurysm survivors…one who died several years later and one who found more aneurysms a few months afterwards and I started having PTSD symptoms again. I’m absolutely terrified that there is another ticking time bomb in my brain and I won’t survive the second time. As much as I complain about how miserable it has been since my rupture with these daily migraines, I don’t want to die either. What I still struggle with, is wanting my life back. I feel guilty about not being able to work…losing my executive salary and now collecting a pittance that is social security and not able to contribute to the household. I feel guilty that the weight of all of this falls on my husband, who is stressed and worries, but tries to hide it. I feel that burden and I am to blame…that because my brain decided to blow up, life became increasingly harder. The weakness of my brain made his life harder.
On top of all of that, I feel guilty for surviving when so many other people don’t. What made ME the one to come out of this fire? Why am I the one worthy of that? I am no better than any of them, in fact, you could probably put a feather on the scale and judge us and so many would be deemed more worthy. Yet here I sit…instead of them. Breathing their air. Filling their space. And feeling empty and worthless. The puzzle piece in the wrong box.
I went to my doctor and she told me it’s not that my anti-depressant isn’t working. It’s that I need to talk more. I need to open up. I need to realize that I am here for a reason and I am doing incredible things for the community and that people need me. Maybe I don’t hear it enough. Maybe I don’t believe it. But there is no magic pill that will take away the anxiety, the “lostness”, or the feeling of being invisible.
So why am I baring my soul and sharing these intimate details of my mental health? Recently, Stephen “tWitch” Boss took his life and like so many other stars before him, people were shocked because he was always smiling. I want to make one thing clear…that is absolutely NOT where my head is…at all, but we need to start having serious conversations about mental health and being able to be honest when we aren’t okay. Moreover, we need to start checking on our “strong” friends. Trust me when I tell you that they are not okay. The ones who are always smiling, always have it together, and are handling every crisis. They aren’t okay. My friends call me a “badass bitch”. They mean it as a compliment…and it is. I’m strong. I’m resilient. I’m a fighter. I will always get back up. But it also means no one ever asks me if I’m okay.
And right now, I’m not okay…but I will be.
** If you or someone you know is struggling or in crisis, help is available. Call or text 988 or chat 988lifeline.org You are not alone & you are loved. Please reach out **
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.
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.
It’s taken me a long time to learn that. Early on in my recovery, I began to suffer from profound survivor’s guilt. The emotional pain was debilitating. I had no clue why I was still alive, especially when so many others weren’t and the statistics were not on my side. I struggled with a philosophical question of what my purpose was for being here. It plagued every moment of my thoughts. Surely there had to be a reason for me to still be alive. People don’t understand that guilt. People think that when you cheat death, you wake up on the other side of the trauma feeling like you can take over the world. That you have somehow become invincible and laugh in the face of fear. You don’t. At least I didn’t. I wondered obsessively why I was still alive.
I searched everywhere for the answer to that question. I read books, talked to religious leaders, interviewed life coaches, and even went so far as contacting a nationally known psychic, which was way outside of my comfort zone. I learned from each of them, but still couldn’t quite relate it to my life and my struggles. What right did I have to still be alive? Nothing in my experience prepared me for this. Nothing could help me understand why I was still here.
Throughout my career in supply chain, I felt like something was missing in my life. I wanted to touch people’s lives. I longed to make an impact on people. And I tried. Through my leadership, mentoring, friendships, but I felt as though I was missing my calling, yet I wasn’t sure what that calling was. I just knew I wanted to make a difference in the world. At the beginning of my recovery, I thought about personal coaching, advocacy, and writing a book, but I had no idea if any of that was viable or even a real option. Amazingly, the psychic, without knowing anything of my history or medical troubles, asked me what happened to my brain, called me a miracle girl, and told me “that book that you want to write? It will come, but first, you need to start doing public talks. Start with local places like libraries, etc. and that book deal will come.”
So here I am. Reinventing myself. Stepping out of my comfort zone and using my experiences to help others. It isn’t easy. I stumble, I fall, I panic and retreat back into myself and question life outside of corporate America. I don’t know if I’ll be successful, but I was given a second chance for a reason. Maybe I have that reason wrong, but I can’t imagine that a commitment to helping others can truly be wrong, can it?
Today happens to be the 2 year anniversary from the day my aneurysm ruptured. I don’t know how something can both seem like yesterday and feel like it was a lifetime ago, yet that’s how it feels. I remember the pain so clearly. I don’t think that feeling will ever disappear. I still suffer with PTSD and have identified quite a few medical issues since my rupture, but I am still alive. I am still fighting. I beat incredible odds to be here. I’ve overcome so much already. Don’t mistake that optimism for believing that everything is wonderful. There are hard days. Terrible days. Some days I have meltdowns and tantrums and that’s okay. But, most days, I live by something my dad always said to me when I was growing up…”I complained I had no shoes, until I met the man who had no feet.”Along this journey, I have met many people who have it far worse than I do. I want to use my voice to speak for others…for our community of amazing people.
For the first time in my life, I feel like I matter. That my life will have an impact. That I can help someone and make someone’s life better. I am blessed and eternally grateful that I have the opportunity to change the world.
There are many challenges that affect survivors, but one of the hardest has honestly been the unknown. There was no warning of things that I should look for or expect. No social worker came to talk to us in the hospital about how to handle this new life I had. It literally was “congratulations on surviving. Go live your life.” But…how? How do you do that after such an event? Care instructions were provided regarding medications, limitations, and follow ups, but long term “life” information was ignored.
There are so many organizations that focus on raising awareness for prevention and raising money for research, but who helps the survivors navigate this rocky path with sheer cliffs that we encounter on a daily basis? Who is there to help us prepare for the anxiety, depression, PTSD, and the grief over losing the person we once were? Research to improve survival rates is vital, but so is caring for the survivors.
Recently, a story surfaced in the NY Daily News about a husband and wife who tragically died in a double suicide after the wife survived a rupture, but they were unable to cope with the needs and loss of self. It’s a heartbreaking story that is repeated, over and over again. Where was the support for these survivors? How did the system fail them so completely that they didn’t feel like they could go on? More importantly, what are we doing to help others avoid this same fate?
I am 22 months post rupture and my journey has been hard. Others have it far worse, but everyone’s journey and response is unique. I have had to quit my job. I left a successful career, with a substantial salary because I could no longer do the tasks that job required. I had forgotten a lot of the technical aspects of the job. I can’t focus for prolonged periods of time. I struggle with vision issues, forgetting words, constant dizziness, exhaustion, and a migraine that has been present since my brain started bleeding the month before it ruptured. I have literally had a migraine every single day for 23 months. It doesn’t end. It is my horrible reminder that my life is different now. I have night terrors, flashbacks, and suffer from PTSD to the point that it can become debilitating. I wasn’t warned about these risks. I wasn’t told to pay attention for signs of depression. I was just told to be happy I’m alive and live my life. Some days it’s harder than others.
Four weeks ago, the headache was unbearable. I was tired…emotionally and physically. I was tired of fighting. I couldn’t stop the tears from falling because the pain was too much to handle. As I laid in my bed that day, I had decided I was done. The only option I saw, was to end my life. I truly believed that I had become a burden to everyone around me…my husband now had to support me, we had gone from a 2 family income to one. I struggled with doing things around the house so he had to take care of the house on top of working more than full time. And I was constantly going to doctors and needing medication, adding to the financial burden. Add all of that to the emotional toll this was taking on me. I don’t recognize myself anymore. I’m not sure who this person is inhabiting my body. When I look in the mirror, I see my reflection, but my thoughts are so different. My reactions to things, my emotions, my needs. It is scary and unnerving and I couldn’t do it anymore.
These thoughts have crept in a few times during my recovery. Each time, it was attributed to new medications I was taking. But this time…there were no medications to blame. This time, it was all me. This day, the more I thought about it, the more sense it made. The answer just seemed logical. Everyone else would be better off without me. I had nothing to offer this world but heartache and burden. As I laid there, I formulated a plan. Tears slowly fell down my cheeks as I thought about those people I love. I knew they would be hurt, but their pain would fade and they would be better off. I was making the right decision. That afternoon, I would do it. Before my husband got home from work. I hated the idea of him finding me, but I kept pushing that out of my mind. I had to.
After lunch, I went downstairs to get what I needed, at which point I was just numb. I had pushed all thoughts out of my head, except the occasional “it would all be over soon and you’ll be at peace.” As I stood in my kitchen holding one of my cats and telling him that I love him, the garage door opened and in walked my husband. I slowly put Duncan down and stared at my husband. I asked him why he was home and he simply told me he decided he should work from home that afternoon.
In that moment, I realized how terribly broken I had become. The tears didn’t stop. I sobbed uncontrollably as I told him what I was planning to do. I hurt and I didn’t understand how to make it better. I didn’t know how to get my life back. All I knew was that we needed help.
My story isn’t unique. It is far too common among survivors and caregivers. This isn’t an easy journey for any of us. What makes it harder is that we have no roadmap and no support to help us navigate. Many of us struggle emotionally and financially, but organizations are consumed with raising money (often asking survivors to donate) to help more people survive, but they seem to forget that there are survivors who need help now. We need to focus some of that dialogue on making patients and families aware, while they are still in the hospital that this will be an arduous journey. More importantly, help people realize they aren’t alone.
Let’s focus on helping survivors figure out who they need to talk to, how to work with financial burdens, and how to navigate the medical system. Let’s provide information and support before they leave the hospital…before it’s too late. Yes, we are grateful we are still alive, but what good is that life if we struggle with burdens that aren’t acknowledged or taken seriously? How do we help caregivers relate to the physical and emotional challenges, while still maintaining their own health? And finally, how do we help survivors create a new life when they realize their old life is a memory?
Hi. Welcome to my blog. This is something that I never thought that I would do. At least on this topic. My life forever changed on April 14, 2018. I almost didn’t survive, but I did. And it sent me on the toughest journey I have ever faced. That was the day that I suffered a ruptured brain aneurysm and I had no idea that everything was about to change. Since then, I have struggled, healed, learned/relearned how to live my life. Most importantly, I learned how desperately we need more education and awareness in the public. I decided early on that the reason I was saved was to help others on their journey (as well as work with medical staff to better understand the patients’ perspective). I want my struggle to become a beacon of hope for others, to guide them when they feel there is no hope. This journey isn’t just mine, it belongs to all survivors and caregivers. I hope you will find my struggles with the medical and personal challenges to be helpful. I will warn you that I won’t hold back. It will be personal, honest, and raw. This hasn’t been an easy journey…but nothing worth it ever is.
I hope you will stick with me as I provide the background information for this journey. The first issue is the prelude to the trauma. It is long and painful. But it is necessary as we begin to understand the medical system in the United States and how patients sometimes struggle to be heard. Ultimately, it is this type of information that will help us solve the problems and make the changes needed to provide better care.
Thank you for joining me on this walk. I look forward to continuing to grow and heal with you.
Hi, everyone! Thank you for joining me. I am Michele Cozadd and I am a survivor. I feel extraordinarily blessed to still be here and I felt that it was important to give back to the survivor community, as well as help myself through my recovery. I decided to start my advocacy with this blog so that I could document my recovery and tackle topics that are critical for us to talk about openly and honestly (sometimes those conversations will be raw and full of ugly crying, sometimes they will make you laugh and full of self-deprecating humor)…topics that are often ignored or overlooked by our medical teams. This isn’t easy. Recovery isn’t easy, but I hope that you will find you are not alone here. I hope that together we can find peace and healing. I look forward to this journey…
I had spent 20 years cultivating a career I hated. It’s crazy to see those words in black and white. I remember driving to work each morning and home each night, watching other drivers, and wondering if everyone hated working as much as I did. I was constantly anxious, I had so much stress, and I couldn’t cope any more. I kept telling myself that the money was worth it. I had done everything I was supposed to…I went to college, I got a master’s degree, I got a job and worked my way up the corporate ladder into a leadership position. So why was I so miserable? Clearly there was something wrong with me for wanting more out of life. I was planning my retirement 20 years before I could actually retire…I had decided to get my real estate license, learn real estate here and then move to Hawaii and use that to make some extra money after I retire. Until then…I’d keep working at a career I despised.
I’ve had headaches my whole life so I just learned to deal with them. They became pretty common with a stressful job. I never thought about the toll it was taking on my overall health. There was no indication that I had anything to worry about.
Despite living with migraines, the headache that hit me on March 13, 2018, is etched in my memory. There was something different about it and it changed me. I had gone out to dinner and came back home and was watching TV when my cousin called. As we were talking, everything went sideways. The room was spinning, my left arm felt weak, and I became suddenly nauseous. My cousin instructed me to get on the floor to raise my blood pressure as he thought my BP had bottomed out. I managed to get on the floor and rest my legs up on the seat of the couch, as instructed, and it went from bad to worse. I managed to hang up the phone and scream for help. Laying on the floor I began to projectile vomit and cry. The pain was unbearable. My husband sprinted up the steps looking for me as I attempted to get up. I needed help walking to the bathroom. My body failed me. The bathroom was spinning, I couldn’t stop throwing up, I had lost control of my bladder, and it felt like someone was hitting the back of my head with a baseball bat. It was the worst illness I had ever experienced. As the sickness started to slow down, I was able to regain my composure. I managed to climb into the shower to clean myself up and we talked trying to figure out what had happened. I’ve never had any illness hit me so violently or so suddenly in my life. It had to be a bad bout of food poisoning. It was the only thing that made any sense. After my shower, I slowly made my way to the guest room to sleep for the night. I didn’t want to go to the ER, it seemed like it was just food poisoning. I’d sleep it off and see how I was in the morning.
When I woke up the next day, I still felt dizzy, but I wasn’t sick anymore. The headache was still brutal. It felt like the Indians were using my head for batting practice. I’ve never felt repeated pain to the back of my skull like what I was feeling with this. As I sat up, my husband came up to check on me and asked how I was feeling. I told him I thought we should go to the ER. If I ask to go to the hospital, you know I need to go. So off we went to the hospital. I explained my symptoms and said that I had thought it was food poisoning, but this headache was just so intense. The doctor came in and after going through everything he determined this was just a really bad migraine with extremely high blood pressure. They gave me a migraine cocktail of drugs and recommended I follow up with my primary care doctor about the unusually high blood pressure. We left the hospital frustrated but hopeful that the medicine helped and I could get some relief from this headache. When we got back home, I crawled back in the guest bed and went to sleep.
The next day, I still had no relief from the headache but I needed to go to work. I managed to force myself to function enough to drive 27 miles to my office in rush hour traffic. I had no idea how I did it. I was praying for death because the pain was debilitating. How was I going to get through the day? Part way through the day, I called my family physician and explained what was going on. I told them I needed to see the doctor about my blood pressure. My dad dealt with high blood pressure so I was no stranger to the issues. I hoped that this was just a fluke and not the start of a permanent issue. They were able to get me in with another doctor the next day at lunch. I was hoping they’d be able to get me relief. So again, we waited.
At the doctor’s office the next day, we explained everything that had happened the last few days and how my headache was no better and my blood pressure had been significantly elevated in the ER. The exam was quick. There was nothing more they could do for my headache since I had gotten the headache cocktail in the ER. And although my BP was pretty high, the doctor felt that it didn’t warrant going on any medication for first time symptoms. They encouraged me to monitor it and go home and rest as much as possible until the headache passed. On the way home, I cried. The pain was so bad and I was so frustrated. I felt like I was being ignored. Like I didn’t understand my own body. I KNEW there was something wrong. This headache wasn’t normal. But I had no choice so I went home, took more pain meds and crawled back in bed.
The next day, I returned to work and tried to function. I was the IT manager on site at a distribution center. My days were filled with meetings and problem resolution out on the DC floor. It was a chaotic job that was highly stressful. I had a new boss who wasn’t impressed with things. He was offsite so I spent so much time making sure he understood how we operated there. The stress levels kept getting worse. That had to be why I was getting these headaches. What else could it possibly be.
Ten days later, I had my normal follow up with my neurologist to deal with the usual migraines that I started getting again when we moved back to Ohio in 2012. I still had the headache so figured he would be able to help me. I told him everything that had happened. He did his normal assessment, looked at my eyes, checked my strength, and asked me to walk down the hallway so he could check my gait. He told me that this was just a really bad migraine cycle and he recommended an occipital nerve block in the back of my head. I agreed. I would’ve sawed off my arm if it took this headache away. I was concerned because I’ve never had a headache so debilitating that it stopped me in my tracks like this one. I remember dealing with migraines in college while I was writing term papers. I still remember leaning over into a trash can to be sick, and then start typing again. I’ve always powered through them, knowing that they would only last a few days. But at this point, we were already 2 weeks into a cycle that was worse than anything I could have imagined. The doctor and nurse returned with my shot and gave me an injection in the back of my head that I swear was an ice pick directly into my skull. I could hear grinding inside my head with every push of the needle. Not a pleasant feeling, but if it gave me relief, I’d deal with it! They had me wait for 20 minutes to start getting some relief and I laid there in the dark room on the exam table and prayed for peace and a night that was pain free. In 20 minutes, they came back and asked if I was any better. I told the doctor there was no difference and he told me that wasn’t possible. If I didn’t feel it yet, just wait…I would. And so I left. Hoping that promised relief would find me soon.
The days ticked by in the slowest hours I have ever experienced. The pain just wouldn’t subside. Every day was like Groundhog Day. Each day, I’d wake up late, convince myself I was fine, drive to work, do as little as possible while sitting in my dark office, drive home, and crawl in bed. I couldn’t function unless it was absolutely required. There was no extra time spent in the office, no working in the evenings, I ignored emergency work calls at night because I literally could not function. My head hurt to touch. It felt bruised. I prayed for relief, even if it came in the form of death, just relief. I lived this day for another few weeks until I woke up on Saturday, April 14, 2018, without a headache. FINALLY! After more than a month, the cycle finally broke! And I couldn’t be happier because that day I was supposed to drive 3 hours to my niece’s bridal shower and I was so excited for her! I was so glad that I would be able to enjoy her day!
