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.
My time in the hospital was fairly uneventful. I couldn’t really do much. I was heavily medicated and the drugs used to prevent vasospasms caused drowsiness. Apparently that, in addition to everything I had just been through was just too much.
I was constantly being evaluated. Daily I would have a transcranial doppler ultrasound to check my brain. Then there were the Neuro checks and stroke evals, which included checking my strength, feeling, and ability to answer questions. I never did well with the questions. I didn’t know what day it was. And I always got the “where are you” question wrong. I always gave them the name of a hospital that was closed for years. In all fairness, it was a hospital I knew as a kid and had no idea that it had closed. Of course, I also couldn’t remember that they had already told me that it was closed. They also liked asking if I knew why I was there. I usually responded with “my brain blew up.” It seemed to be a pretty fair assessment, in my opinion.
I felt like I was living in a nightmare. Every time I opened my eyes, I saw blood oozing down the walls. Not just slow drips. It was pouring from the ceiling. It looked like I was on the set of a slasher film. I asked my husband what it was. I explained what I saw and he looked at me with a mix of fear and concern as he rushed away to get the nurse. As she asked me to explain what I was seeing she said that she was going to call the doctor. It wasn’t long before the surgeon appeared and asked me to explain everything. I described it again as he looked into my eyes with a bright light and performed yet another neurological exam. He told us that it was nothing to be afraid of. It was the result of the massive amount of blood in my brain and they should eventually go away. During my stay, the disturbances morphed from the blood to brightly colored floating bubbles to black shadow people walking past to giant spiders climbing the walls.
I had become friendly with the nurses. They would bring me popsicles and jello and we’d talk about our lives and joke with each other. I don’t know if it was because I was the only patient who was conscious, but at the start of each shift, they would come in and argue over who would get to take care of me. The ones that would lose, would still pop in when they could to chat. It was a great break from the monotony. A nurse from the ER had even come up to check on me. She walked in and asked me if I remembered her. I just stared wide-eyed at her and looked at my husband. I was panicking because I wasn’t sure what was happening. Was this someone I should know? He stepped forward and said “she took care of you when you got here. Don’t you remember?” I looked from him to her and just slowly shook my head. I thought I was losing my mind. I’ve never seen this person before. I don’t just forget people.
Family and friends stopped in, bringing me food and keeping me entertained when I was awake. My sister would visit and help me get cleaned up. She helped me with bedside baths and would wash my hair with these weird packs the hospital gave me. We’d reminisce about how she always had to help get me ready when I was little. I guess some things never change. It didn’t take much to wear me out and I often fell asleep while people were talking. The doctors told us sleep was the best thing for me. It was a good thing because staying awake wasn’t something I had the ability to do.
My brain was muddy and confused. Every day I asked the surgeon if I could go home and if I could ride rollercoasters. My husband looked at me strangely because I hadn’t ridden a rollercoaster in over 15 years. I just looked at him and said “I want to go to Disney World!” Every day I asked the charge nurse if I could take a shower. I desperately wanted to feel the water run over me and to wash my hair. I felt gross and unkempt. And every day, the answer was no.
The days seemed to drag. Eventually physical therapy came up to evaluate me. They were going to take me for a walk and brought me a walker. It was the first time I had really been out of bed, yet I was completely annoyed that they had a walker. In my stubborn mind, I had been through 12 knee surgeries, what would I possibly need a walker for after a brain injury? We started with the walker and I adamantly told them I didn’t need it so they let me try without it. I had clearly lost strength. I didn’t understand how that had happened so quickly. What had happened to me? I was fairly steady, but I was slow. Because we live in a multi-level house, they made me climb steps. They were challenging and exhausting. I needed help to steady me, but I managed. We returned to my room, where I immediately crawled back in bed and slept. The therapist felt this was the only appointment I would need because I was doing better than anyone had expected. I wasn’t sure if I agreed with that assessment.
One day, a hospital executive was taking a group on a tour and came into my room to ask about my care. Never one to miss an opportunity, I told him everything was wonderful except I would love to take a shower. He asked why I couldn’t and I told him I didn’t know, but I kept being told no and that was all I wanted. He wanted to know how long I had been there and I looked at my husband because I had no idea. I didn’t even no what day it was. Hell, I couldn’t even remember where I was. The executive went and got the charge nurse and asked why I couldn’t shower. She told him that they weren’t equipped to handle that because there weren’t even showers on that floor. He instructed her to take me to another floor where there were handicap accessible showers, stay in the room with me, but let me shower. I was so excited as we planned for me to shower the next day after my husband could get soap, shampoo, and a razor that I requested. The charge nurse just chuckled at me and told me she gave me credit for persistence. I suspect she was highly annoyed with me, but I didn’t care…I was going to take a shower! I can say, that was, by far, the very best shower I have ever taken in my entire life!
We had become so close with the nurses that I asked my husband to bring them donuts the next morning. I wanted to thank them for the incredible care I was getting. My life wasn’t the same anymore, but they were making things bearable. Amazingly, my surgeon announced that if everything looked good on my next brain scan, I could go home on Friday. My husband wasn’t thrilled with this. He wanted them to keep me longer, after all, it had only been 11 days at this point. We lived 3 hours away. What if something happened? I personally couldn’t wait to be home. In my own bed, with my cats. I just wanted this nightmare to be over so I could get back to my old life. I had no idea that my old life was a memory.
Friday came and my surgeon said I could go home! It had been 13 days since my rupture. He came into my room to give me the good news and I immediately asked him when I could go back to the gym and if I could ride rollercoasters. Clearly I thought rollercoasters were a bigger part of my life than they actually are. Nurses came and went, offering hugs, well wishes, and congratulations for surviving (which I’m still not used to hearing). The surgeon shook my hand and encouraged me to “live my life” (with a few restrictions during recovery). There was no information on what I may experience in the future, no warning that my life would be completely different now, no advice on HOW to live this new life. He then did something I’ve never experienced from any doctor…he gave us his personal cell phone number and told us to call with ANY questions or concerns at any time of day. He told us that he will be there for us. In the last 22 months, I have used that number on occasion and he has even randomly called me to check on me. I can truly say that despite not knowing what to expect, this surgeon is a blessing in my life.
With that, we went on our way for our 3 hour drive home. I couldn’t wait to get home and crawl into my own bed. I was already talking about going back to work. I knew it would be a few more weeks, but I just had this vision that this was no different than my knee surgeries…you go through surgery, you have therapy, you’re all better. That’s the way everything works right? I had never heard of a traumatic brain injury, but I was sure it wouldn’t really be different. When I drifted off to sleep, I truly believed that.
For the record…22 months later and I still haven’t encountered a rollercoaster.
Hi. Welcome to my blog. This is something that I never thought that I would do. At least on this topic. My life forever changed on April 14, 2018. I almost didn’t survive, but I did. And it sent me on the toughest journey I have ever faced. That was the day that I suffered a ruptured brain aneurysm and I had no idea that everything was about to change. Since then, I have struggled, healed, learned/relearned how to live my life. Most importantly, I learned how desperately we need more education and awareness in the public. I decided early on that the reason I was saved was to help others on their journey (as well as work with medical staff to better understand the patients’ perspective). I want my struggle to become a beacon of hope for others, to guide them when they feel there is no hope. This journey isn’t just mine, it belongs to all survivors and caregivers. I hope you will find my struggles with the medical and personal challenges to be helpful. I will warn you that I won’t hold back. It will be personal, honest, and raw. This hasn’t been an easy journey…but nothing worth it ever is.
I hope you will stick with me as I provide the background information for this journey. The first issue is the prelude to the trauma. It is long and painful. But it is necessary as we begin to understand the medical system in the United States and how patients sometimes struggle to be heard. Ultimately, it is this type of information that will help us solve the problems and make the changes needed to provide better care.
Thank you for joining me on this walk. I look forward to continuing to grow and heal with you.
So I woke up on April 14, 2018, and was so excited that I didn’t have a headache. I couldn’t get over how bad that migraine cycle had been. It was absolutely brutal, but it was over! Now I could focus on my niece’s bridal shower. I was going to emcee the games for the event and was excited to be a part of it. I had been really nervous with how bad I had been feeling. As I was getting ready that morning, my husband and I were talking about the headache and that we were both glad that it finally broke because I had to drive 3 hours to get to the shower. I focused on getting myself ready and was so happy. After I was done, I was goofing around with SnapChat filters and just being my weird self. It was a fabulous day!
I hopped in the car and set off on my journey. As I headed toward Youngstown, I was singing along to the radio and sipping on my drink. I enjoyed road trips so I was in my element. My husband called a few times just to make sure my headache was still under control. I had told him that I could still feel it, but it was nothing like what it had been. As long as I could tolerate it, I was fine.
I finally arrived at the community center where the shower was and my sister and family were in the process of decorating. I asked what I could help with and there wasn’t much for me to do so I sat down and wrote the card out for my niece. As my sister broke away to go get ready, I told her I’d come with her and talk to her. We went into the bathroom where she set out to do her hair and makeup and I was leaning against the wall telling her a story that I thought was hilarious. Barely a few sentences into the story, my headache came back with a vengeance.
I remember looking at myself in the mirror, as I lifted my hands to my head, and I let out a piercing scream of “my head!” It felt like a hot knife pushing through the top of my skull. I was dying and I knew it. It felt like I was falling through a dark hole…collapsing into an abyss. Thirty seconds, 20 minutes, or 2 hours later, I don’t know, but I woke up on the floor of the bathroom. My sister’s face was above me as she stroked my forehead. I could see the concern on her face. I heard voices but couldn’t place them. Behind me I heard someone ask “is she still alive?” and my niece sharply respond “YES! Get out of here!” There was no mistaking the fear in her voice. I started vomiting uncontrollably, I couldn’t feel anything. I had no idea what was happening. I remember laying on the floor crying and all I could do was apologize to my niece for ruining her special day. I felt truly awful and just wanted to sink into the floor from embarrassment.
There are a lot of holes in my memory at this point. Things faded in and out, I have pieces of things but nothing truly substantial. I fell in and out of consciousness. The medics arrived and I was loaded onto the gurney and into the ambulance. I remember my 79-year old mother climbing into the ambulance with me and seeing the fear on her face. The fear of seeing her youngest child dangerously sick. I heard someone else ask if mom was coming with me and my mom firmly saying “she is not going alone!” I don’t remember the ambulance ride. I don’t know if I was conscious or not. I remember seeing ceiling lights flashing overhead through my closed eyes as I was wheeled into the ER. I opened my eyes and my dad was staring at me. I began to tear up and asked what he was doing there. I knew he didn’t drive much anymore, but there he was. Why was he there? I just had a headache! He just looked at me the way a dad looks at his baby and whispered “I would have driven as long as it took to get to you” and he squeezed my hand and wiped away the falling tears.
That is the last thing I remember.
I’ve been told that I was in and out of consciousness after that. I had conversations. I even stood up and walked to the bathroom on my own. None of that exists in my brain anymore. It is all gone. I’ve asked my doctors. I’ve asked my therapists. They’ve all told me not to search for those memories. The brain is like a computer hard drive. It is holding all of your knowledge, memories, skills. My hard drive has been damaged irreparably and those memories are permanently gone. So much of me wants the details, but I’ve been told the trauma would be unbearable, so I push aside the gnawing questions and curiosity in exchange for some level of sanity.
At some point, I was transferred to a different hospital that could handle my trauma. I began having seizures and stopped breathing. I was intubated and fell into a coma. I would later learn that my brain had been bleeding for 4.5 weeks. I had suffered a ruptured brain aneurysm, a subarachnoid hemorrhage, a subdural hematoma, and due to the amount of blood and swelling of my brain, my brain had a 7.5mm midline shift to the left. The prognosis was grim. My husband, who had driven the 3 hours to get to me, arrived at the hospital thinking that I was just dealing with a migraine. He had no idea that every peace we knew would soon be ripped away. The hospital staff and police confronted him. How had I sustained this damage to my brain? Had I fallen? Did he hit me? My family defended him. Everything had turned into chaos. My family was told there was only a 6% chance that I would live and if I managed to survive, there was little chance that I would be functional. My life was essentially over as we knew it.
Looking back, I cannot imagine what my family was going through. I was laying unresponsive in a hospital bed with tubes and wires coming out of my body at every angle. A machine was breathing for me. And no one had any clue if I would ever wake up. My husband was given a choice of which procedure he wanted the doctor to do. The statistics were slightly better for one over the other, but the procedures were totally different. I was taken into surgery to attempt to coil the ruptured aneurysm. The surgeon was hopeful to be able to do the coil procedure because it would be less invasive. They would go through an artery in my groin and snake their way up to my brain and implant platinum coils into the aneurysm to stop the bleeding and hopefully prevent it from growing and getting any blood flow in the future. If my arteries were too twisted to get through, they would need to crack open my skull and clip it in a procedure known as a craniotomy. Thankfully, the coil procedure was successful, but the waiting continued. I had made it through the surgery, but there was still no guarantees. There was no guarantee that I would wake up or what I would be like if I did.
Four days later, I finally woke up. It was at that point I found out the basic details of what had happened. I’m not sure how I reacted or what questions I had as I still have no memory of that. I do remember laying alone in my room in ICU that night and processing what I had learned that day. Earlier in the day, I had told my husband that the only thing that I had remembered was hearing the words “be still” while I was in a coma. I assume that I had some awareness while unconscious and a nurse was telling me to be still while they did their exams on me. So as I was laying there pondering my new reality in the quiet of the night, I heard, very clearly “be still and know that I am God” whispered right into my ear. I whipped around to see who was there. No one was in my room. My movement must have alerted a nurse because she came rushing in to check on me and ask if I was okay. I asked if anyone else was in the room and she told me it was just the two of us. I knew I had been awake. This wasn’t a dream. In that moment, there was an unbelievable calm that washed over me. I couldn’t explain it, I had just had brain surgery. I had nearly died. And yet, there I was…calm. The nurse was done with her checks and said goodnight as she lowered my bed and she left my room, leaving me alone again. I settled back into my pillow and just let the tears flow. I knew I’d be okay. No matter what battles I still needed to fight, I knew I’d be okay.
