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 16

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 10

I’m exhausted. Those two little words say so much and not nearly enough.

Fatigue is a major issue that a lot of brain trauma patients deal with. It isn’t the “normal” tired. It is a chronic and overwhelming exhaustion that is debilitating. One of the best analogies I’ve seen is a battery. Before the trauma, your battery could fully charge. Every night, you’d go to sleep and wake up in the morning with that battery charged for your day ahead. After the trauma, your battery no longer fully charges. It’s like a 3 year old cell phone that can only hold a 50% charge. On top of that, every activity takes more energy than before, so that battery depletes a lot quicker than it used to. That battery now runs out early in the day, unless you can recharge it. That makes doing anything a challenge. Simple things like focusing on a meeting at work will zap that battery and trigger something called neuro-fatigue. Although the battery example provides a great visual to people, my go-to is that it is a tiredness that goes deep into my bones.

Before my aneurysm, I worked in demanding and stressful jobs. I often worked extremely long hours and traveled a lot for work throughout my career. My weekends were spent either working or doing things around the house. I would spend an entire day cooking and by the time the day was done, I’d be tired, but it was manageable. It was a good tired. A tired that comes with the feeling of accomplishment. My husband and I would often go on hikes, camera gear packed, and spend a day out taking pictures and enjoying nature. Those days were tiring but my battery would always replenish.

After my rupture, I didn’t sleep. I was exhausted all the time. I told my doctors that I would only sleep for an hour at a time. They explained that fatigue was common and normal. But they also told me that I needed to sleep so that my brain could heal. They prescribed a variety of sleeping meds and one after another failed to work. I’d still only sleep for an hour at a time. The pills made me feel tired, but sleep never came. I became a zombie and continued to express concern. Eighteen months after my rupture, I went to a neurologist who specializes in sleep issues. After two sleep studies, they discovered that I cannot reach REM sleep anymore because of the damage from the rupture. My brain wasn’t healing because I could never get to a deep restorative sleep.

We finally found a treatment plan that gets me to REM sleep about 4 nights per week, so that took care of part of my exhaustion. The neuro-fatigue was still a challenge. Part of my recovery has been weekly appointments with a vestibular therapist, speech therapist, and occupational therapist. It became apparent that part of the issue was that I was still trying to live my life the same way I always had, rather than considering my new limitations. As I worked on my speech, balance, and vision issues, all three therapists had the same advice…slow down.

I struggled to understand the neuro-fatigue. I looked for causes, patterns. It never seemed to make sense. Things I did yesterday without issue, I couldn’t do today. Things as simple as baking a boxed cake mix would knock me down for 3 hours. Trying to read a book for longer than 15 minutes would trigger intense pain and wipe me out for the rest of the day. My therapists told me that I now had to break things up throughout the day. I could no longer spend the morning cleaning the house. Instead, I was told to work for 30-60 minutes at a time, depending on the task, then rest for an hour or two before starting something new. My nature is to “power through” and finish my work. It’s who I am…or was.

As a brain trauma survivor, my energy stores are depleted quickly because the brain is trying to do things on a different path. It’s like your commute to work being blocked by an accident so you take an alternate route. You aren’t familiar with that road, but you know it leads to your destination. Your brain is sucking up your energy trying to do things differently. My brain is trying to rebuild pathways that were destroyed by the rupture and the processing takes more energy and time now. When I push myself too hard, the recovery can take up to three days. I am functionally useless during this period. It starts with me slurring my speech, stumbling, and completely unable to form a coherent sentence. I will collapse into bed and sleep as much as possible. There is no cure besides rest.

Along with so many other things post-rupture, this was a new obstacle to navigate. The challenge was frustrating…it IS frustrating. I’m still learning to cope with this. It is honestly one of my constant struggles and the thing that sends me into the “why me” mode. I hate not being able to function like I used to. I hate not being able to go non-stop all day. I miss the me that used to not think about where I would be when I got tired.

The good news is, I’m learning to recognize the signs before it gets to the point of complete exhaustion. I started to notice that as my battery runs down, I become more irritable, I struggle to concentrate and focus, noise becomes more intense, and I feel “heavy.” It’s as if my blood turns to lead and my feet are encased in cement. I’ve become more in tune with my body. I now pay attention to all the cues my body shows me. At the first appearance of any of these signs, I stop what I’m doing and lie down. Well…most of the time. I still have my moments when I think I’m invincible and I keep pushing myself, but I’m learning.

Like everything on this journey, it makes me appreciate my blessings. I’m grateful to be alive to feel tired. But I’m definitely going to take a nap.