Episode 21

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

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

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 15

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

“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 9

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…