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 ...

I don't know if I would be okay if I didn't have dogs. I have really bad days, difficult but manageable days, "meh" days, and good days. My dogs are unwaveringly there for all of them. To cuddle and play and demand that I think about more than myself. They help keep me going. Even when fatigue grasps me like a chokehold and makes me want to sleep all day. They want nothing more than to be fed, to exercise, and to be near us.  Today I am choosing to be thankful. Thankful for my dogs. Thankful for my partner in life, my husband, who loves to go on the same adventures I do. Thankful for my friends. Thankful for the two robins using the bird bath at work right now, as I sit outside and write this. Thankful for my kayak and all the lakes I live near.  Things are really tough right now, but I have right now  to be thankful still. What and who are you thankful for today? May YHWH sustain you during these very trying times, KELLY ANN

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 ...

Eight years. That is how long it has been since I've been able to really push myself physically without dire, couch-ridden consequences. Eight long years of trying and failing to remain consistently active. 2012 was the year I got the flu that changed everything. It took 6 months for me to be able to walk places without having to sleep for two days to recover. Since then it has been two steps forward and 10 steps back. Now, finally , I am doing yoga at home consistently and hiking and bicycling with minor  setbacks. Seriously. MINOR. I don't think I could be more stoked. I really feel like this is the year I can get back on my feet. Build up the muscle I still remember having and keep forgetting I don't have anymore. The year I might even be able to get to a point where opening a jar doesn't cause 10 minute tremors from the effort. I pushed myself on a hike last week and my dizziness had me stumbling and exhausted by the end of it. But one nap and a good night...

When I was in college, I was obsessed with Deuteronomy 30:11. "For this command which I am commanding you today, it is not too hard for you , nor is it far off." As I've mentioned before, I was studying theology in college and struggling with mental and physical illness. All my studying kept bringing me back to the question that was defining me at the time, "what's the point in living?" and I kept reverting back to suicide.  This verse was my lifeline.  Christian theology was telling me that the Old Testament laws were too hard to obey and that is why Jesus came. But, as a perfectionist, "too hard" is too much for me to bear. However, these words told me that it was , in fact, possible to please/obey and therefore, love God. When I finally found YHWH in the Torah, He led me to a simple and beautiful beginning.  Biblical Festivals/Shabbats and the dietary laws. Nothing complicated. Just weekly rest, 7 festivals, and changin...

Christian theology emphasizes our fallen world and fallen humanity right and left. Jesus came to be the "2nd Adam" because the first Adam condemned us all to be slaves to sin (no matter how hard we fight it).  I have a big problem with this teaching. The aim is to point everyone to their need for salvation and make what is holy fundamentally necessary in our lives (i.e., to point us to Christ). However, the reality is that it teaches us to look down on our planet, ourselves, and those around us as fallen or ruined until Christ comes again. Salvation is supposed to be what sets us free from this slavery to sin and death. However, Christianity never gave me freedom from sin. It merely gave me freedom to confess my sins and gave me forgiveness . Sure, that perfect, utopian, absolute freedom from sin happens when you die or Jesus returns, but what about now? I'll be honest, as a kid, it made me hate myself, and want to kill myself. I'm talking ...

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...

The greatest gift that my Elohim (God) ever gave me was to tell me that He was set apart from the “Church.” Different from, and not equal to all the shit I was experiencing from church people and all the doctrine I was wrestling with. It happened several years ago. I was just done with everything. Believing in God was exhausting and too painful. So I set out to become an atheist. Only God wouldn’t stop talking. He reminded me of Scripture I didn’t even know I had memorized while watching movies, tv shows, reading books that weren’t supposed to be his mouthpiece. Every day, He spoke to me. So, I challenged Him. I went for a hike and I challenged God’s existence and character, until finally I said, “If you are like [list of names I won’t mention] then I want nothing to do with you.” The answer was earth shattering for me. I sat down and cried for an hour, probably. Completely confused and dumbfounded by its meaning. “I am not the church.” “Who are you, then?” I asked. “Rea...

Religion hurt. Religious people hurt worse. There were always gems, of course. Genuine people that were an absolute blessing. But the bad and misguided outweighed the good in my life. I have a Bachelor's degree in Ministry Praxis, having studied Theology, Ancient Greek, Ancient Hebrew, and Pastoral Care. I was an intern as a Pastor's assistant and a TA for my Bible Professor. I worked as a youth pastor for two churches. I was a worship leader. I've seen people healed right in front of me. Prayed over someone having an asthma attack, unable to breathe, and watched it subside before my very eyes. I've met prophets and intercessors to be reckoned with, and been one myself. But abuse and abandonment followed me wherever I went.  The straw that broke my camel's back was a woman sending me awful emails every Sunday because her husband side hugged me. When she wrote, "your very presence causes me to stumble," I was done. She gave me no choice. I caused ...

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...

Muscle weakness may last just a couple of days sometimes, but the emotional struggles it triggers linger much longer. Each day is one task at a time, pretending that I'm not afraid it will happen again. Especially now, as work is extremely busy, I push away the anxiety that threatens me around every turn. I have to remind myself that I can only do what I can and I have to be okay with not doing what I cannot.  It has taken me years to recognize this. That there are things I cannot, in fact, do.  ...and that is okay. Saying you can't do something is not saying you can't do anything .  So I stop to smell the wildflowers, make time to read, play Solitaire or Kings in the Corner. Whatever I can make time to do to quiet my mind and think of nothing or anything else. But most importantly, I focus on people.  The people around me don't care if I use a cane, or don't come to work for a couple days, or need to ask for help with a few meals or with my dogs....

There is little I like less  than intermittently being unable to walk. I just spent two days painfully using a cane to walk. I wish I had a wheelchair to get around in for these moments but neither my house or work has wheelchair access. Using a cane when your legs don't want to hold you up is so painful. The palms of my hands, my fingers, my wrists, my arms all hurt from holding me up for two days. Yesterday morning I pretty much slid down the ladder from our loft bed to go to the bathroom, which is currently in a different house because ours is out of order. When I reached the steps to my tiny house on the way back I literally sat down and dragged myself up them. I was so exhausted when I made it inside I just sat on the floor with my head on the couch crying. This is life. This, apparently, is Porphyria.  It hurts to be this physically weak and I hate  feeling useless . When you suddenly can't walk and you don't know how many days the muscle weakness will c...

To the friends and family of those with PTSD, Anything that reminds us of our trauma, be it a gesture or a phrase, makes it hard for us to open up to you. Trust is now defined by our baggage. If you do not understand our baggage, you will  hurt our feelings and we will  have a hard time trusting you. Even if we grow to trust you in everything, it takes just one phrase for us to guard certain parts of ourselves from you, almost indefinitely. It is our only defense after the hurt and damage that has already been caused.  PTSD teaches us that we can only trust others so far . That there is no one to count on but ourselves. This is probably the biggest tragedy of PTSD in today's culture. Trust is damaged and no one is acknowledging this fact to repair it.  This is not to say that you can never say anything that reminds someone with PTSD of their traumatic experiences. That would be impossible. We, as the victim of PTSD need to have the freedom to express ...

I was an unofficial foster parent when I was 23 to my oldest niece. Unofficial because I received no financial aid and bore the full brunt of having a 13 year old dependent. It was not  the hardest thing I have ever done. Everyone thought I was in over my head and made sure to tell me frequently. That  was the hardest part. The judgment people around us projected onto us. I didn't mind our tempers rising, her fits when I told her no, or the sessions we had after every outburst to talk it out when we both calmed down. I didn't mind the 11-16 hours work days I had to do to put a roof over our heads or spending the summer homeschooling her so she could pass the seventh grade. I didn't even mind that I had to wash our clothes in the bathtub with a washboard because I couldn't afford the laundromat every week  and  put food in the kitchen. I didn't mind because of the movie nights, conversations, hikes, and adventures that we shared. All the sweet moments, true frie...

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...

I left Christianity. I was angry at this idea that "all things were possible for me" except obeying/pleasing God. I was also angry at how I was treated in churches time and again. To me, there was no difference between what they called "the world" and Christians. To me, the "non believers" in my life were the genuine people who actually cared about me. That was when I embarked on the greatest journey of my life. After a year of trying (and failing) to be an atheist, I decided to give God one last chance. One last chance to prove himself to me because, frankly, He wouldn't stop talking to me . In novels, on television shows, everywhere I looked I was reminded of verses that spoke too accurately to my thoughts. I apparently didn't even need to pick up a Bible with all the years I had spent reading and studying it. But God didn't save people from treating other people like shit. This was the heart of my problem. Everywhere I looked in Christia...

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 ...

I always hated being told I had mental problems when I was a kid. As if I had no choice but to succumb to erratic panic, heart palpitations, and other emotional outbursts everyone deemed as my mental problems . How is it possible that my mind could have a "mind of its own," so to speak? Am I a slave to my own body? Most people won't tell you that you can control your mind. The Buddhist idea of enlightenment is essentially about having control of your mind to find nirvana in absolute truth. The Torah is filled with encouragement that nothing commanded is too hard to do . Yet, psychiatrists told me that I'd just have to try to prevent panicking. As if they didn't think that I could.  All of life is one day at a time of new experiences, hurtles, struggles, etc., that we have never faced before. It is impossible to prevent freaking out from every single one of those new experiences. The real problem is that freaking out is considered wrong. When I was...