The Life of Glory

In the past, having a seizure while camping would have scared me off from camping. But not this time. I went camping again. We brought a tent and the dogs this time, but it wasn't quite enough. I struggled, I won't lie. I still got uncomfortably cold in the wee hours and didn't sleep well, but I didn't have a seizure . So, I'd call it a win. Next step: buy a 0 degree sleeping bag (wish me luck on finding a good one on sale). Still, it was a spectacular night of a little rain, some reading, wine, stargazing, and comet gazing. What is your favorite part of camping?  I love the sounds of nature. Birds, owls, crickets, the trees rustling in the breeze. Listening to those sounds, I can let go and just be in the moment . When we got caught in the rain and had to hide under a bridge with the dogs for a bit, I marveled. The sound of raindrops  hitting the river while lightning flashed, and thunder roared, was like a symphony. Yep, sounds are definitely my favorite part of ...

For the longest time I honestly thought my symptoms were just going to kill me someday. I would be laying there completely paralyzed and only able to blink on purpose, waiting to die because doctors had no clue what was going on. And, honestly, I was okay with that. I stopped caring. I wasn't scared. I just embraced each day and stopped denying myself what made me happy.  I have this picture hanging on the wall of my tiny house.  Taking this picture was kind of stupid, but I don't regret it. The falls were so frozen people were ice climbing them that year. So after work on January 14, 2012, I grabbed my dog and we went for a short, late afternoon hike. The falls were so frozen I could only hear a faint trickle of water, and I got this picture from the top of the large boulders around the top. Then it happened. My dog had been a pill the whole 20 minutes it took to get to this spot with my cane to take the picture, but suddenly he really started freaking out. So I stepped back ...

We were camping out. The weather had been gorgeous. We were having a great time. I went to bed feeling great. Then the temperature dropped. I was awoken, shivering and convulsing at who knows what time, with a seizure that lasted until the sun was all the way up. The birds were singing and I was trying not to cry loudly.  Seizures are brutal. There is no way around that. But this was the scene when I got back home around 6:30 that morning and amazingly I recovered rather quickly from the spasms. If quickly means sleeping most of the day and feeling sore but alright the next day. People seem to forget that this is my normal. I have NES and Porphyria, which can also cause muscle weakness and spasms. I don’t feel sorry for myself that I had to quit camping early in the morning because of a seizure. I don’t feel sorry for the pain I felt or the tears I cried. I feel elated that my body recovered as quickly as it did when I was 20. I feel like I’m getting my body back on track to being ...

I was washing my hands in the bathroom, coughing through my sore throat and cold. But when I grabbed for the hand towel, I went down . I felt my muscles weaken and get heavy underneath me as the world started floating around me. I fell hard on my knees and before I could steady myself, my shoulder slammed into the ground and my head followed suit. All I could do was cry. Alone. Unable to call for help. Unable to get up for who knows how long. 5 minutes. 10 minutes. 20 minutes. I didn't have a clock or a phone. When I got back to our tiny house, tears rushing down my face and new bruises forming, I didn't have the strength to open our finicky door.   This is life with Porphyria/NES. But when it's done, it's done.  I am not sharing this so you feel sorry for me. I am sharing this because within it is my greatest comfort. There really is a time for everything and none  of it is bad . People shy away from you when you're suffering because let's...

I took this selfie today while my dogs were eating. I had just woken up from a post seizure nap and flopped on the floor to feed them. I wasn’t going to post anything but this photo was so beautifully honest and raw, I had to. This picture shows my sadness, my weakness, my frustration, my real and beautiful self. Yesterday I went hiking with my husband, friends, and our dogs. Today I’m sitting on the floor, weak and in pain from another seizure. But all I can think of is a song by India Arie called Break the Shell. “Child it’s time to break the shell Life’s gonna hurt but it’s meant to be felt You cannot touch the sky from inside yourself You cannot fly, until you break the shell” I know I personally have a thick shell from a lot of pain but today, in the midst of my post seizure recovery, I know it’s starting to break. After years of wrestling with PTSD and NES and other incurable diseases while being shunned and ignored, I finally feel like freedom is around the corner. Hea...

Non epileptic seizures are not curable, nor do doctors fully understand their origin. Therefore, it is up to me to figure out what works and what doesn't. Here are a few tricks I have learned that work for me... Distraction can be a good word . Managing stress is often a balancing act and sometimes I need to choose to be distracted from tasks that stress me out at that moment. 10 minutes or an hour can make a world of difference when I switch to a task or activity that does not  stress me out. Regularly practicing this helps me avoid multiple seizures. Physical activity helps . I know people say this all the time, but physical stimming, dancing, walking, bike riding, any kind of physical movement really does make a difference. Sometimes I can't do much activity because my muscles are too weak, but whatever level I can manage helps me process my thoughts by physically releasing my emotions in this way.  You need a support system.  Honestly, embarrassment and panic w...

Having NES I have learned that little things are what matter the most. A beautiful day. Time with friends and family. Hot tea on a chilly Spring morning on the front porch. The little Robin that visits my yard every summer. Dinner out with people I love. The last major seizure I had lasted more than two hours and cost me my desk job. I hid in the bathroom hoping it wouldn't happen and found myself laying on the floor with my head bouncing off the floor. According to my co-workers, I was gone for over an hour before they even found me and the seizure was still not over. I convulsed at intervals, unable to move or even lift my head intentionally. I got fired two days later because I couldn't work for more than a few hours at a time as I recovered from the physical ordeal that is a non-epileptic seizure. In fact, that seizure set me so far back that I had to stop hiking for a year . No matter how well you do most of the time, when NES knocks you down and it takes you ...

"Mental Problems," and "Panic Attacks," are labels that limit and frustrate us. Us, being me and anyone like me who has been taught that we are, in fact, limited . I say "taught" because I have fought  this teaching tooth and nail and limb my whole life in order to achieve what I want. Remember everyone asking you what you wanted to be when you "grow up" and having to research colleges and majors in high school? Well, I studied and explored my options and was excited about my conclusion. However, when I went to an adult in my life and told her, she told me I wouldn't be able to handle it. Without hesitation. When I came to my own defense she continued to shoot it down.  She was right at the moment, but not because my anxiety wouldn't have been able to deal. She was right because no one believed I could do anything . The fact of the matter is that because I had mental problems there wasn't a single adult in my life that believ...

“Too hard.” How many times have you heard that phrase? I’ve heard it a lot. When you wrestle with mental health issues, this phrase and concept especially seems to come up. In church, it was too hard to please God because “all have sinned and fall short.” At home it was too hard to please my family because of my uncontrollable emotional outbursts and overwhelming circumstances. Around everyone else it was too hard to be who they wanted me to be because I hyperventilated and started experiencing painful muscle spasms they all got uncomfortable with. It often felt like every place I turned, especially as a teen, everyone expected me to be someone else . When I was young I clung to my Christian faith like God was the only life raft there was to save me, but I couldn’t quite get in and so I constantly felt like I was about to drown. I clung and clung, trying to feel accepted by someone as people (peers and adults alike) alienated me because I made them uncomfortable. It was ...

One of the most difficult things about growing up in the church with a blanket of "mental illness" over your head is that its theology can result in some pretty messed up conclusions. For instance, Christian theology taught me that humans are awful apart from Christ. Doesn't sound too bad, but add the plethora of sins we supposedly can't help but commit even "after" or "with" Christ and it becomes impossible to please God no matter what you do. The answer they have to this is heaven. So, I naturally concluded that dying and going to heaven was my answer and sought to make that happen sooner rather than later. I was alone at home on a hot afternoon. A young teenager, angry and hopeless and in tears. I had decided that slitting my wrist and bleeding out was the way I was going to end it all. Right then. With the knife to my wrist, someone said my name. I put the knife down and called out, afraid someone had come home and would catch me. I wal...

Once upon a time my parents were told by psychiatrists that I was anorexic and had a panic disorder.  Anorexic because no one bothered to mention that a loss of appetite is a common side effect of anti-depressants in young children. I was institutionalized for not eating and then hospitalized when I could hardly stand on my own. I was 10 years old. A panic disorder because I had a phobia of vomit and didn't know how to handle being overwhelmed by chaotic situations. Fast forward to college and I had learned how to panic over new situations without hyperventilating. I even learned how to handle vomit to a degree. However, my symptoms got worse. I started going paralyzed out of the blue, without panicking over anything . New symptoms arose like extreme dizziness, muscle weakness, mental confusion and disorientation. So I became distraught and even depressed. Then one day, in a delightfully hot bath with melancholy thoughts, I suddenly found myself breathing water. I FREA...

I remember one particular seizure in college that started teaching me how to deal with my non-epileptic seizures.   At the time, my college shared a building with a church. There was a full sized couch in one of our practice rooms (it was a music college) that doubled as a nursery. I often went to that room when I felt a seizure coming on so I could lay down safely and not repeatedly hit my head on a hard floor.  This particular day my blood pressure tanked out of the blue during my seizure. So I was laying on the couch, completely paralyzed and lightheaded, with beads of sweat lightly covering me. My heart rate dropped and I remember asking God to kill me right then and there. I was ready. I was so tired.  Very clearly, it was like someone whispered next to my ear, "not yet." I remember crying angry tears then. It was all I could do. Then someone found me, turned on the light, and asked if I was ok. I couldn't answer but for a few quiet, stuttered word...

Have you ever felt betrayed? Alone? While in church? I did. One too many times. Having "mental problems" while being involved in church is okay until you become "too much" for people to handle. This is the hard lesson I learned. Over and over again. Until I got to the point where I wanted nothing to do with church or God. What's the problem? I'm a strong-willed, tenacious, and logical woman with NES (non-epileptic seizures). My seizures are a result of PTSD from a lifetime of trauma, including being told  I had mental problems without having had them. At least, there is no evidence that my "problems" were legitimately mental disorders. Yes, I experienced depression and was suicidal after  the psychiatrists and medication and pressure. Who wouldn't be? When you are expected to be suicidal, how can you not be? These phantom  problems followed me to every school, every college, every job. Before I knew it was NES or how to deal ...