Tag: Anxiety

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 20

Posted on by Michele

Recently I saw a post on social media that said something like “I apologize if I was ever the toxic person in your life, but I’m working on becoming a better version of myself” and it just hit me hard. Looking back at my life, I realize I was that toxic person. I wasn’t hurting the people around me, at least I don’t think so, I just had a lot of negative energy. I realize now, I was carrying the enormous weight of emotional trauma and insecurities from my youth that I wasn’t fully mature enough to process or manage. It had become a quagmire of pent up negativity that I often seemed to blame others for and let it dim my light. The funny thing was, I preached positivity and spoke often about the need for it and the importance of it, but I couldn’t muster it in my own psyche. My well was dry.

That post made me realize how much things have changed in the four years since my aneurysm has ruptured. My perspective on life has shifted. And, while, one would expect such a change to occur after a near death experience, I think it goes deeper than than that. I feel this glow from inside of me that wasn’t there before…or rather, it was, but it was clouded by a window covered in soot. The light couldn’t get out. In the past, I think my light gave up trying. I was stressed, tired, angry…life got in the way. I gave up. And I let that happen.

It’s no surprise that brain damage changes a personality. Sometimes it’s for the better, sometimes it’s for the worse. For me it has been this metamorphosis of balance and peace that I never thought possible. My mother used to always tell me that I was extremely high strung. I think her exact words were that I was “wrapped around the axle”. I have always been a Type-A personality and never been able to truly relax. I had no idea about that concept. I used to say that I never knew how to have fun. When we would go on vacation, I would have a folder with the itinerary of each day planned out. It wasn’t specific down to times, unless there were tours, but each day was scheduled. Now, everything is different. We went on vacation last year and my husband asked what we were doing one day and I said “whatever we wanted”. I’ve stopped planning my life and started living it.

It’s been no secret that I have had a lot of medical issues following my rupture. My challenges are significant at times. Better than a lot of survivors, worse than others. Life isn’t easy. It isn’t what I wanted. There are days I have temper tantrums. There are days I ask God why he saved my life. But when it truly comes down to it, I’m grateful for my aneurysm rupturing. Yep. You read that right. It doesn’t seem like something anyone with any sense would say. But here I am saying it (although some that know me may say I don’t have any sense, but that’s another story entirely). My reasoning is simple…I’m no longer that toxic person. Oh, don’t get me wrong, I am still passionate about certain things…politics, sports, social justice issues. And I’m still going to get all fired up about those things, but I hope that my positivity outshines the negativity that I feel about the world sometimes.

I’ve learned to deal with the issues of the past and truly forgive, not just lip service, but true forgiveness. I’ve even learned to be a little easier on myself…not much, but a little. I look at the world realistically with the positivity of the future…with the beauty of each moment that exists right in that space in time. It may not be perfect, but it’s what we have and I promise you there is something beautiful right where you are standing.

So if I was ever that toxic person in your life, I apologize…I’m working on becoming a better version of myself…someone I like a lot better.

Episode 18

Posted on by Michele

The changing seasons has always been one of my favorite things. As I’ve moved around the country for my career, it was one of the things I frequently complained about missing since we were always in the south. Autumn is my favorite and as much as I love the south, it just couldn’t compete with fall back home. I love everything about it from the leaves to apple picking to the football. When we decided to return back “home” to the north nearly a decade ago for my job, one of the biggest things on my “PRO” list was the changing seasons. I was excited to finally have all four seasons again, even if it meant snow in the winter…my least favorite.

Those first few years were wonderful. It was as though I appreciated the beauty of the seasons with a fresh set of eyes. Even winter was wonderful and Christmas with snow was magical. I forgot what that was like. There were still the grey skies in the winter to contend with and the mild seasonal depression that is often associated with it, but overall, I had this new found appreciation for the beauty of nature with each passing phase.

I have always suffered from weather related migraines. So when we would get storms or changes in pressure, I would get headaches. My headaches had pretty much disappeared when I left the state the first time, 20 years prior. I had a few bad migraines over the years, but nothing that required any treatment. Unfortunately, when I moved back, I noticed an uptick in the frequency in headaches. Between weather patterns and a demanding career, everything started to change. I started joking that the state was trying to kill me…it turned out to be not such a funny joke.

By the time the aneurysm happened, I was having migraines multiple times a month, lasting 3-4 days at a time and they were made worse around the seasonal changes. Since the aneurysm, I dread the seasons changing. I especially feel this weight on me as autumn approaches and the sun sets earlier. When darkness falls at 5:00 and days are filled with grey skies and the sun is rarely seen, my mood becomes sullen, my headaches become more intense than usual, and I don’t want to leave the bed. Even with Spring and Summer, the changing of the seasons leads to intense pressure. The headaches are much worse and there is nothing to do but wait it out and let nature run the course and stabilize.

I live for those days when the sun is shining and the sky is blue when I can get out with my camera and try to ignore my headache even for the briefest of moments to find some peace and normalcy. I’m not the only survivor who tries to find a sense of normal in these moments. My friend, Mike, whom I met through my advocacy and whose aneurysm ruptured the day before mine, has his own approach.

For him, like me, the change to winter with the grey skies, biting cold winds, and the starkness of the snow can cause the doldrums. He tries to find ways to remain happy and returned to downhill skiing to embrace the season. He said it was scary for him because, as a survivor, he was afraid to fall and hit his head. Mike overcame it by acknowledging that survivors have already overcome such difficulty and he challenged himself to do it for all of those survivors who can’t physically do it. He told me that it was hard and extremely tiring, but it was very special when he finished.

Ultimately, for Mike, the challenge is to be in the moment and recognize each season’s beauty and feel lucky to be around to witness them. But isn’t that really the lesson for all of us? We survivors have known that our lives can change in an instant. We were given a crash course in perspective. But honestly, without sounding preachy, the last two years have taught us all that life can change in a moment. You can lose someone in the blink of an eye. I hope we each take a moment to appreciate those beautiful colors that nature gives us in that sunset, the peaceful quiet of a snowfall, the sound of the rain as it hits the roof. I hope you’ll mend fences and love each other because life is too short and it is taken away too suddenly.

Be safe. Be Well. Be Blessed

Episode 16

Posted on by Michele

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.

 

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.

Episode 4

Posted on by Michele

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?

Can we please work together?