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.
“Yes.” My husband just stared at me…not sure what to expect next. “Why?”
“It feels like I’m too big for it. Like it belongs in a dollhouse.”
“No. I promise, everything is perfectly normal sized”.
I had only woken from my coma a few days prior and things were still a bit foggy. We really didn’t give that a second thought considering everything else.
There was never a shortage of things to worry about and focus on with my recovery. Sometimes the issues were mundane like headaches, which you’d expect after brain trauma. Other times, the problems were bizarre and complicated and as impossible to describe as they were to believe. I routinely saw snakes. Not actual snakes, but snakes made out of triangular prisms. I always explained it to doctors the same way each time: one triangle is right side up, the next is upside down, then right side up, and so on until it forms a chain…or a snake. They are semi-translucent and shimmery like prisms casting rainbows. They slither through my field of vision. Only appearing in my left eye. Always just my left eye. It starts with one, then two, then there are so many that I cannot see out of my left eye. It can last anywhere from 30 minutes to two hours or it can stop just as quickly as it started. None of the doctors could figure out what was causing the snakes…except to say it wasn’t my eyes. My eyes were perfect. Well finally! SOMETHING on me got a clean bill of health! The overwhelming assumption was that the episodes were ocular migraines and there was really no cure. So I learned to live with them.
As my recovery progressed, new problems popped up almost weekly it seemed. I went to speech therapy to help my memory. I went to Occupational Therapy to help focus my vision issues. I went to Vestibular Therapy to help with my balance and dizziness. I saw Neuro Opthamologists for the ongoing vision problems that no one could explain. I was having trouble focusing despite having perfect vision. I couldn’t get my eyes to communicate what they were seeing to my brain. The snakes were making appearances three times per week or more and I was really beginning to hate them. It got to the point that my husband could just look at me and see the expression on my face and say “snakes?” And I would just nod my head.
As a survivor, I feel like I am constantly going to the doctor or finding things that are wrong. It’s overwhelming and disheartening. I was keeping things to myself either because I didn’t think they were important or I felt like I was being a hypochondriac. I had this vision that the doctors see my name and think “oh gosh, her again…what NOW?!” So I just tuck things away and hope they’ll go away on their own or, at the very least, not kill me.
I had been struggling with weird feelings of the room or the furniture being too small for me again or everything pushing away in a tunnel. And so many times, I had to stop when I was walking because the floor was moving. It felt as though I was always on a people mover or an escalator and I couldn’t get my footing. It was the strangest feeling to walk into a room and all of a sudden, it felt like the ceiling was coming down on my head. I had mentioned this a few times to my husband, but never to the doctors because it just seemed weird and I’ve been laughed at for the snakes before, I could only imagine what this would cause.
As I learned to live with all of these new problems and navigate my daily headaches, I had the spell at Chik-fil-A that I recounted in Episode 14. That issue actually brought me some closure that I wasn’t expecting. On that particular day, the ER told me my potassium was dangerously low and they seemed to think that was the end of it. I followed up with my neurologist the following week though and they initially wanted me to see a cardiologist, but as we talked through the symptoms I had and what exactly happened, they decided that it would be ideal for me to see an epilepsy specialist for a 7 day EEG. I was full of emotion…perplexed, scared, defiant…I didn’t have epilepsy! That’s not what this was. Seriously…hadn’t I been through enough?
I succumbed to another doctor and more tests. After all, I’m the one that wanted answers.
I went for my tests and as the days passed, they weren’t able to find anything definitive. They kept me sleep deprived to trigger a seizure, which wasn’t hard since I don’t sleep anyway. They’d see blips on the screen where I’d get close to one, but it would never fully form into the wave. And then the doctor came in to talk about what he had seen and the experiences he heard from me. Based on all of my symptoms, he believed that I did, in fact, have epilepsy. Seizures can start any time after brain trauma…from months to years afterwards so this wasn’t unusual. He also thought that I had something called Alice In Wonderland Syndrome. I actually started laughing at him because I thought he was kidding. Then I thought he was making fun of me. Turns out it’s actually a disease and I had it.
I left the hospital that day with new diagnoses and more medicine to add to my massive pill caddy. I was struggling somewhere between relief that I wasn’t crazy and anger that there was yet another thing wrong with me.
It’s been 10 months now and I’m doing much better. I’ve had some seizures…mostly when I get extremely tired or worn out. The seizure medicine has stopped the Alice In Wonderland episodes for the most part…occasionally I have episodes where I am too big for a room and that seems to also happen when I am exhausted. And a very interesting success was that the snakes have entirely disappeared. It turns out, they were seizures as well. When I noticed they had stopped, I mentioned them to my epilepsy doctor. I had never considered mentioning it to that team before because I never considered that they were seizures. So finally, after 3 years, I have said goodbye to the prismatic snakes that haunted me several times per week. I’m learning to take things in stride and I have found an even deeper love for Wonderland.
Maybe Alice had it right…
“You’re entirely bonkers. But I’ll tell you a secret. All the best people are.”
It’s been a long time since I’ve paced in the shadows of the moonlight. I’ve been having flashbacks and panic attacks for hours now. It all seems so sudden. I was perfectly fine earlier. The only thing that helps when I get like this is to pace and randomly sit wherever I am for brief moments. Then pace again. Over and over the cycle goes until I can breathe again. Until I can feel the fear slip away and feel more of myself returning into my body. Until I can stop seeing myself dying on a bathroom floor.
I watched fireworks this year on Saturday night for the first time since my rupture. This was the first year that the sound of the booms and the flashing lights haven’t curled me up into a ball counting the minutes until the explosions stopped. Seeing the shadows of the flares through my closed eyes reminds me of bright hospital lights overhead as I was being wheeled from the ambulance after my rupture, when my reality transformed my vision.
I have the perfect view of my town’s firework show right from my house. I can sit in the comfort of my house and watch every brightly colored sequence. It’s a sight to behold. So this year, we gathered some snacks and took our seats and watched the show and it was beautiful. There were a few times that I had to close my eyes and do some deep breathing exercises, but overall, I handled it. Unless the panic was delayed, I did great. The next morning, I woke up in a “mood”. Not bad, but not good either. I knew something was off. I just wasn’t feeling good on the Fourth, but couldn’t put my finger on what was wrong. As night fell, my neighbors started setting off small fireworks and I could feel myself getting twitchy. I was watching TV and I was becoming agitated and irritable. I finally just put earplugs in and went to bed. Almost immediately, I started having flashbacks of me laying on the bathroom floor.
My flashbacks devolved into these “what-if” scenarios that my brain started making up. What if I had been at work that Saturday? What if it had happened there? How long would it have taken someone to find me in that bathroom? Would I have died? Would they have known that it was my head without me having had the luxury of screaming “my head” to someone standing next to me? Since the local hospitals missed my brain bleed for nearly 5 weeks, how long would it take for them to figure it out when I came in unconscious?
Insert panicked breathing.
I began pacing to clear my head. As if the soft fall of my footsteps will chase away the demons that fill my head with images of terror and despair. Ultimately, it’s because I don’t know what else to do. I can’t outrun these visions. I stop and I am always lying on that bathroom floor waiting to be saved. I stop and my brain has concocted another scenario that hasn’t happened, and likely never will, but that I add to the growing list of things that I’m now terrified of. In reality of course, my sister was there to catch me…literally and figuratively; but in these scenarios, I’m always alone. Never sure if someone will find me before I die.
I decided tonight to let the pain be heard. I stopped pacing long enough to write and while I poured over the words, the tears poured out right along with them and I was reminded that it is okay to feel all the things.
I just ask you all to remember that when someone tells you the fireworks are a trigger for their PTSD, don’t scoff because they weren’t in combat. Or a victim of gun violence. There are so many other types of trauma that can be activated by the sound of explosions and the flashing of lights. And not every aneurysm survivor has the same recovery story. Be patient. Be kind.
If you are a survivor…be gentle with yourself. Recovery isn’t easy. Some days are brutal and they sneak up on you. Give yourself some grace. You’ve been through hell.
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.
My migraines started in my early teen years. With me, they definitely seemed to be hereditary. My dad had them, as did his mother, his brother, and my cousins. I remember when I was little my dad would literally stand and bang his head on the wall when his got so bad. I never understood what he hoped to accomplish with that, but he did it. Mine were fairly tolerable and less frequent than my dad’s. As I got older, they got more intense. I remember my senior year in college, they had gotten somewhat debilitating. I was an English major with a minor in writing so I spent a lot of time writing papers that last year. I would sit at the computer, in tears, with a trash can on my lap, repeatedly taking breaks to vomit, then going back to typing my papers. Looking back, that was a miserable time, and really unhygienic.
I had migraines with an aura. Typically, before the pain would strike, I’d see a haze of color in my peripheral vision. It was usually purples and pinks, with traces of blue. Sometimes it was as if my horizontal hold would go out in my eyes and they would almost “flip down a page” like the world’s worst viewfinder. My headaches would send me cowering in a dark room, made as cold as possible with fans and air conditioning, where I could take refuge until it passed. I would lay in bed, in this cold room, buried under a pile of blankets, with the heating pad wrapped around my head, Vick’s on my forehead and under my nose, and a hot damp washcloth draped across my eyes. When the first injectable migraine medicine came on the market, I was beyond excited. My doctor was nervous for me to try it because I had a known heart condition and we had no idea how it would work. He wanted me in his office for my first injection. So there I was, in his office the next time a migraine struck, and he gave me the injection. I laid back on the table and waited. Twenty minutes passed and it felt like my throat was closing off. Apparently, that was a “normal” reaction. I’d rather live with the headaches!
My headaches got even worse after I got married…wait…there’s a joke in there somewhere, I’m sure of it. Anyway, it got to the point that my husband was taking me to the ER almost monthly for a headache cocktail. The hospital was beginning to suspect that I was a drug addict looking for a fix. They told my husband that we needed to find a better solution for my migraines. We went up to the Cleveland Clinic for an appointment with a neurologist. I don’t remember if they had done any scans of my brain or not, but I do remember they had put me on an anti-seizure medicine to prevent headaches. The doctor told us that migraines are cyclical and feed off of each other and that we just needed to break the cycle. After about six months, they took me off of the medication. Shortly after that, we moved from Ohio to Knoxville, Tennessee. My migraines were gone. For the next 15 years, I lived nearly migraine free. It was a delightful existence with only one migraine per year. In the grand scheme of things, that was an existence I could celebrate!
We had moved from Tennessee to south Florida to Dallas, Texas. Change of location didn’t seem to impact my headaches. I got terrible sinus headaches with storms, but they weren’t migraines. Weather patterns always seemed to play a role. By this point, I had learned to recognize the auras and would take a couple of over the counter migraine pills and I’d never get a full blown headache. I had learned to manage the situation and was rather pleased that I finally had a solution. Maybe I had grown out of the headaches. My dad had stopped getting his too, but they suspected that his stopped because of blood pressure medicine…another curse that runs on his side of the family.
In 2012, we moved back to Ohio and almost instantly, my migraines came roaring back to life. It felt has if they had been in hibernation this whole time and simply needed to recognize the landscape before they would spring back to life to torment me. I worked a stressful job as a project manager and the hours were long. I assumed that was the cause of the return. My doctor told me to manage the stress better. Oh, okay, that is a completely reasonable request…let me just add “relax” to my to do list.
The headaches continued getting worse until I finally went to see a neurologist locally. He suggested a different anti-seizure medicine from what I had used years before and for months, we played with dosing. Finally, we had gotten to the point where I was getting only 5-7 per month. I was actually pretty happy with that…it’s amazing how low your expectations drop when you feel like hell. The doctor wasn’t happy with the results and thought we could do better so he increased the medicine one last time. I say final time because that level of medication seemed to be a tipping point for me and I became suicidal. Backing off the dose and returning me to a lower dose didn’t help. The medication and my body were no longer compatible. We tried several other drugs in that class of medication to no avail. They all had the same effect.
As the years passed, the headaches continued to get worse…more frequent, more intense. We all know how this story turns out so I won’t bore you with a retelling of the day my brain tried to kill me. Instead, I want to share how this story has progressed. My brain started bleeding on March 13, 2018. It ruptured on April 14, 2018. And I have literally had a migraine every single day since that March day. I’ve had a headache for 912 days straight…I’m not counting or anything. There are very few things that I would like to do for 912 days straight. I can say with certainty that living with a migraine is NOT on that list. But, here we are.
This journey has been an interesting one and I am beyond grateful to have an amazing care team at the Cleveland Clinic who has worked with me through every experiment we have tried to find the right combination of drugs. We have tried old drugs, brand new drugs, drugs for blood pressure, anxiety, muscle relaxers. Oral drugs. Injectable drugs. Diet changes. Activities like meditation. And if I come to them with a natural remedy, they’ll investigate to make sure it isn’t going to interfere with any medications or with my brain. I cannot stress this enough…it is so important to find a doctor who will listen to you. One who will fight to find answers. That’s what I have found and it’s been a game changer for me. There was a moment where they wanted to try me on a different blood pressure medication and my BP skyrocketed. They were extremely quick to make adjustments and return me to my old medication, noting that some meds just don’t work well with some people.
As I said before, we’ve tried it all. We’ve tried brand new drugs to the market, which normally makes me nervous. I don’t like being the first to try things (I realize others tried them during the trials but still). But this ongoing headache has been so annoying that I’d try just about anything. Oh…meth works for headaches? Okay, so maybe I won’t try ANYTHING. Anyway, I had been doing Botox for a while, but it wasn’t really giving me any relief so I stopped that and started using a monthly injection of a new drug. It seemed to work great. I was getting almost 15 days per month that I would call “headache free” despite still having a dull, nagging pain. At least the headache was a 1-2 on the pain scale, rather than a 7-9. Then on month 5, the injection completely stopped working. We decided to try a different injection. This one seems to be holding steady after 5 months. I’m getting about 15-20 days of “headache free” days during some months. Some months are worse than others. I also have a selection of abortive medications for when I get breakthrough headaches. Depending on the severity, I can choose from any of 5 drugs to help me cope and get relief. It’s not ideal, but neither is living with a migraine for over 900 days straight.
One thing that has surprised me a great deal is that it was recommended that I try THC for my anxiety, PTSD, and chronic pain. So, I got my medical marijuana card and spoke with the pharmacist on site at the dispensary. Several combinations were recommended when I got my license in 2019. I tried multiple things…smoking, tinctures, gummies…but got no relief for the headaches. It did provide relief for the anxiety and the PTSD though. This year, when I went to the doctor to renew my card, we talked through how my pain was. He wasn’t happy that I was on so many medications. He told me the point is to get me away from pills…especially pain pills. He suggested I try transdermal THC patches. So, when I went to the dispensary, I got a small pack to try. Later that day, I felt the migraine getting worse and I asked my husband to put one at the base of my neck, between my shoulder blades. I could not believe it that I was headache free within 30 minutes. It wasn’t a 1-2. It was gone. My mind was blown. Let me tell you, I went back to the dispensary and bought a ton more! Some days they work, other days, not so much. In the last month since I’ve started this regimen, I’ve probably had 7-10 days completely headache free. I don’t automatically put on a patch…I wait until the headache really starts because I dream of a day when I won’t actually have a headache and I don’t want to waste a patch if I don’t need one…ever the optimist. These patches have truly changed my life for the better. Days without headaches? Is this what the rest of you feel like every day? Damn y’all are living the good life.
We still notice that weather plays a role in my headaches. The barometric pressure changes are easy to pinpoint. I can tell you within an hour when it’s going to start raining…it’s a great party trick. This week, we had tornadoes on Labor Day and I truly thought I was dying. I curled up in the fetal position and cried. It was hell. Nothing helped. I was willing to let the tornado take me to Oz so I could ask the wizard for a new head. Living in Ohio definitely doesn’t seem to agree with me.
My 30 year journey with migraines has taken a few detours that I never expected. I went down some pretty terrifying roads and totally ignored the “Road Closed” sign two years ago. This has been an exercise in patience and sometimes frustration. But like I said last week…there’s always someone worse off than you. There’s someone out there who would love to have your worst day. No matter what, I am going to keep pressing forward in hopes that I’ll once again have months where I have no headaches. I’m not aiming for hours, or days. I want to count the months. I’m greedy that way. And I’ll get it someday.
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.
I’m exhausted. Those two little words say so much and not nearly enough.
Fatigue is a major issue that a lot of brain trauma patients deal with. It isn’t the “normal” tired. It is a chronic and overwhelming exhaustion that is debilitating. One of the best analogies I’ve seen is a battery. Before the trauma, your battery could fully charge. Every night, you’d go to sleep and wake up in the morning with that battery charged for your day ahead. After the trauma, your battery no longer fully charges. It’s like a 3 year old cell phone that can only hold a 50% charge. On top of that, every activity takes more energy than before, so that battery depletes a lot quicker than it used to. That battery now runs out early in the day, unless you can recharge it. That makes doing anything a challenge. Simple things like focusing on a meeting at work will zap that battery and trigger something called neuro-fatigue. Although the battery example provides a great visual to people, my go-to is that it is a tiredness that goes deep into my bones.
Before my aneurysm, I worked in demanding and stressful jobs. I often worked extremely long hours and traveled a lot for work throughout my career. My weekends were spent either working or doing things around the house. I would spend an entire day cooking and by the time the day was done, I’d be tired, but it was manageable. It was a good tired. A tired that comes with the feeling of accomplishment. My husband and I would often go on hikes, camera gear packed, and spend a day out taking pictures and enjoying nature. Those days were tiring but my battery would always replenish.
After my rupture, I didn’t sleep. I was exhausted all the time. I told my doctors that I would only sleep for an hour at a time. They explained that fatigue was common and normal. But they also told me that I needed to sleep so that my brain could heal. They prescribed a variety of sleeping meds and one after another failed to work. I’d still only sleep for an hour at a time. The pills made me feel tired, but sleep never came. I became a zombie and continued to express concern. Eighteen months after my rupture, I went to a neurologist who specializes in sleep issues. After two sleep studies, they discovered that I cannot reach REM sleep anymore because of the damage from the rupture. My brain wasn’t healing because I could never get to a deep restorative sleep.
We finally found a treatment plan that gets me to REM sleep about 4 nights per week, so that took care of part of my exhaustion. The neuro-fatigue was still a challenge. Part of my recovery has been weekly appointments with a vestibular therapist, speech therapist, and occupational therapist. It became apparent that part of the issue was that I was still trying to live my life the same way I always had, rather than considering my new limitations. As I worked on my speech, balance, and vision issues, all three therapists had the same advice…slow down.
I struggled to understand the neuro-fatigue. I looked for causes, patterns. It never seemed to make sense. Things I did yesterday without issue, I couldn’t do today. Things as simple as baking a boxed cake mix would knock me down for 3 hours. Trying to read a book for longer than 15 minutes would trigger intense pain and wipe me out for the rest of the day. My therapists told me that I now had to break things up throughout the day. I could no longer spend the morning cleaning the house. Instead, I was told to work for 30-60 minutes at a time, depending on the task, then rest for an hour or two before starting something new. My nature is to “power through” and finish my work. It’s who I am…or was.
As a brain trauma survivor, my energy stores are depleted quickly because the brain is trying to do things on a different path. It’s like your commute to work being blocked by an accident so you take an alternate route. You aren’t familiar with that road, but you know it leads to your destination. Your brain is sucking up your energy trying to do things differently. My brain is trying to rebuild pathways that were destroyed by the rupture and the processing takes more energy and time now. When I push myself too hard, the recovery can take up to three days. I am functionally useless during this period. It starts with me slurring my speech, stumbling, and completely unable to form a coherent sentence. I will collapse into bed and sleep as much as possible. There is no cure besides rest.
Along with so many other things post-rupture, this was a new obstacle to navigate. The challenge was frustrating…it IS frustrating. I’m still learning to cope with this. It is honestly one of my constant struggles and the thing that sends me into the “why me” mode. I hate not being able to function like I used to. I hate not being able to go non-stop all day. I miss the me that used to not think about where I would be when I got tired.
The good news is, I’m learning to recognize the signs before it gets to the point of complete exhaustion. I started to notice that as my battery runs down, I become more irritable, I struggle to concentrate and focus, noise becomes more intense, and I feel “heavy.” It’s as if my blood turns to lead and my feet are encased in cement. I’ve become more in tune with my body. I now pay attention to all the cues my body shows me. At the first appearance of any of these signs, I stop what I’m doing and lie down. Well…most of the time. I still have my moments when I think I’m invincible and I keep pushing myself, but I’m learning.
Like everything on this journey, it makes me appreciate my blessings. I’m grateful to be alive to feel tired. But I’m definitely going to take a nap.
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.
