Tag: Support

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 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 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 15

Posted on by Michele

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.

Episode 12

Posted on by Michele

“I complained I had no shoes until I met the man who had no feet.” My dad used to tell me that when I was young if I was having a pity party about something. It was my constant reminder that there is always someone who is worse off than you. That has stuck with me my whole life.

I try to be positive most of the time. Sometimes I fall into a trap and can’t seem to find the bright side no matter which way I look at it. Typically, when something really bad happens to me, I break down and have a pity party for myself that lasts no more than a day. I am a firm believer in allowing yourself to acknowledge and feel those emotions to their fullest, but then I have to pick myself up, dust myself off, and come up with a plan. It’s okay to feel sorry for yourself for a while. It’s normal. But you can’t live there.

Before my aneurysm, I was so high strung (my mother liked to say I was wrapped around the axle), that I would latch on to a comment or action and dwell on it forever…or so it seemed. I would complain and bitch about the most trivial things because they didn’t meet my standard of action. Okay, maybe I wasn’t quite the horrible person I’m imagining, but I certainly could’ve been a better human being. I mean, I would give you the shirt off my back, but I’d complain about how people were treated at work. Somehow, after my rupture, a switch was flipped in my brain. All of a sudden, the little things were just that…little. They weren’t worth the energy it took to worry about them. It wasn’t immediate, but eventually, I realized how important life is and how incredibly lucky I was to have a second chance.

Let’s be honest, 2020 has been a dumpster fire for pretty much everyone on the planet. We’ve been quarantined for months, the virus continues to rage, people are losing their jobs, there are protests, an ugly election, and parents now have to worry about kids returning to school. It’s a lot of negativity for anyone to have to deal with. It is perfectly normal for people to be depressed and feel hopeless. It’s definitely challenging us all. But I want you to pay attention to your words, your thoughts. That internal dialogue is more powerful than you realize. I’m not telling you that things aren’t bad right now…whether you are struggling with an illness, a job loss, or something far worse, but your thoughts feed your actions and your actions can change the world.

We’ve seen so much ugliness in the world lately. There has been entitlement, violence, and vile rhetoric that has plagued us. But we each have it in our power to choose something different. We each have the power to make a difference. This post was originally intended to talk about how positivity has improved my recovery (multiple times), but I realized that there was a much bigger opportunity because of what is happening around us. My doctors have been amazed at my attitude during recovery and how I take what has happened and turned it into a positive. When you consider the options, why would you choose anything other than positivity? Life is a series of events that happen to you. Sometimes you control those events and other times, they are thrust upon you. However, how you respond to those events is entirely within your control.

I want you to listen to your self talk. I want you to truly listen and ask yourself if you would say those things to the love of your life/your mother/your sister/your child. If you recoil at the thought of saying it to them, then you have no business saying it to yourself. You are worthy. You are enough. Exactly as you are.

Now, I want you to consider the people you come in contact with every day…coworkers, essential workers at restaurants/grocery/pharmacies, other customers, and people on your social media feed. How do you talk to them? How would you feel if someone spoke that way to your grandmother? We are all coping with life. We all have challenges that we don’t let others know about. We survive on this planet as a blanket of interwoven threads. We are connected and responsible for each other. And we are stronger because of it. Kindness goes a long way…and it is free. Every single morning, when you wake up, you have the opportunity to choose kindness. Let’s make it a habit to start caring about each other again.

So when you feel overwhelmed and beat down and think that you just can’t go on any more, feel those feelings. Have your pity party, but pick yourself up and move on like the badass you are! And use your journey and experiences to be empathetic to your fellow man. You never know what battles they are waging and your kindness might be the only bright spot they can find.

Episode 6

Posted on by Michele

Where there is breath, there is hope.

It’s taken me a long time to learn that. Early on in my recovery, I began to suffer from profound survivor’s guilt. The emotional pain was debilitating. I had no clue why I was still alive, especially when so many others weren’t and the statistics were not on my side. I struggled with a philosophical question of what my purpose was for being here. It plagued every moment of my thoughts. Surely there had to be a reason for me to still be alive. People don’t understand that guilt. People think that when you cheat death, you wake up on the other side of the trauma feeling like you can take over the world. That you have somehow become invincible and laugh in the face of fear. You don’t. At least I didn’t. I wondered obsessively why I was still alive.

I searched everywhere for the answer to that question. I read books, talked to religious leaders, interviewed life coaches, and even went so far as contacting a nationally known psychic, which was way outside of my comfort zone. I learned from each of them, but still couldn’t quite relate it to my life and my struggles. What right did I have to still be alive? Nothing in my experience prepared me for this. Nothing could help me understand why I was still here.

Throughout my career in supply chain, I felt like something was missing in my life. I wanted to touch people’s lives. I longed to make an impact on people. And I tried. Through my leadership, mentoring, friendships, but I felt as though I was missing my calling, yet I wasn’t sure what that calling was. I just knew I wanted to make a difference in the world. At the beginning of my recovery, I thought about personal coaching, advocacy, and writing a book, but I had no idea if any of that was viable or even a real option. Amazingly, the psychic, without knowing anything of my history or medical troubles, asked me what happened to my brain, called me a miracle girl, and told me “that book that you want to write? It will come, but first, you need to start doing public talks. Start with local places like libraries, etc. and that book deal will come.”

So here I am. Reinventing myself. Stepping out of my comfort zone and using my experiences to help others. It isn’t easy. I stumble, I fall, I panic and retreat back into myself and question life outside of corporate America. I don’t know if I’ll be successful, but I was given a second chance for a reason. Maybe I have that reason wrong, but I can’t imagine that a commitment to helping others can truly be wrong, can it?

Today happens to be the 2 year anniversary from the day my aneurysm ruptured. I don’t know how something can both seem like yesterday and feel like it was a lifetime ago, yet that’s how it feels. I remember the pain so clearly. I don’t think that feeling will ever disappear. I still suffer with PTSD and have identified quite a few medical issues since my rupture, but I am still alive. I am still fighting. I beat incredible odds to be here. I’ve overcome so much already. Don’t mistake that optimism for believing that everything is wonderful. There are hard days. Terrible days. Some days I have meltdowns and tantrums and that’s okay. But, most days, I live by something my dad always said to me when I was growing up…”I complained I had no shoes, until I met the man who had no feet.”Along this journey, I have met many people who have it far worse than I do. I want to use my voice to speak for others…for our community of amazing people.

For the first time in my life, I feel like I matter. That my life will have an impact. That I can help someone and make someone’s life better. I am blessed and eternally grateful that I have the opportunity to change the world.

For where there is breath…there is hope.

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?