Tag: survivors guilt

Episode 21

Posted on by Michele

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.

A photo of the night sky.

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 **

 

 

Episode 19

Posted on by Michele

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.

Episode 11

Posted on by Michele

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.