The Life of Glory

  Our son is growing healthy and strong. I know this by the steady 156 heart rate the doppler records every doctor visit, the strength of his kicks in my side and the punches to my bladder. It is truly extraordinary. My body has been malfunctioning since I was 19 and here it is perfectly making a healthy baby. Almost 16 years of not trusting my body because of seizures, muscle weakness, mental confusion, and dizziness. Yet here I sit, the healthiest I have ever felt with my son wiggling inside my womb as I type. I am counting down the weeks until I get to meet our little Sammy Ray in awe. Both because I am excited and because I am growing increasingly uncomfortable. Mostly though, I am excited to hold him and watch him discover the world.  Meanwhile, this summer is full of record heat and massive fires surrounding my small haven in the Sierra Mountains. The one blowing smoke into our neck of the woods is over 180,000 acres and threatening a neighboring town just 30 minutes fr...

Many have been concerned about the fact that I'm pregnant, so let me set you all at ease. Once upon a time, doctors were not sure what my health issues were and serious consequences arose to the possibility of me getting pregnant (such as permanent paralysis). Then, I got a new GP who referred me to many specialists who ruled those possibilities out.  My GP then reached the conclusion that I most likely have something called Porphyria. A very rare, hereditary blood disease that literally explains all  of my symptoms (consequently, many can carry the disease without any symptoms). Thus far, they have not been able to definitively prove or diagnose me with Porphyria, but living like I have it has proven to help me manage my symptoms.  Once my doctor deduced this possible diagnosis, he told me I should get pregnant.  Studies have shown that menopause, for instance, can lessen symptoms or completely cure symptoms of this disease due to its sensitivity to hormone cha...

 Porphyria.  When my GP first told me that he was convinced that I have it 6 years ago, I didn't know what that meant.  Today, I still don't know if I actually have it. 1 out of 3 tests was positive but it's rare and no one but my GP will take the idea seriously. So, honestly I gave up. For a few years now. I had one awful year of test after test that nearly damaged my nerves and aggravated my symptoms until all I could do was cry. The pain was unbearable and I was just...finished. Doctors didn't believe me. They told me to see a therapist. So I did. It didn't change anything.  If I do have Porphyria, as my GP thinks, it would explain everything . It would explain the pancreatitis doctors thought I had until my follow up appointment when they realized they had misdiagnosed the problem and had no explanation to offer me. It would explain my seizures and how they didn't show up on the EEG because they aren't an electrical imbalance, but actually neurotoxins in...

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 ...

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 ...

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...

I've been reflecting a lot on what Christian's call Holy Week and how it parallels Matzot (or the week of unleavened bread commanded in the Torah).  I never liked Easter with its easter egg hunts and flowery dresses and white lilies everywhere. None of which having anything to do with the messages they were throwing at me about Jesus and his death and resurrection. But when  I started being Torah obedient, the festivals commanded in the Torah as "a law forever throughout your generations, in all your dwellings" changed everything for me. In this case, Matzot. The week including and following the Passover dinner which, today, can only require unleavened bread and bitter herbs while you keep your shoes on and whatever else you put on to go on a journey. A week of "remembrance."  And I am in awe of Matzot this week. Messiah came and made all of YHWH's festivals that much more meaningful and beautiful, but this  festival is full of  promise . Wher...

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...

Have you ever had friends reject you because they were apparently incapable of meeting you where you were at? Had friends that made you feel like everything you ever said fell on deaf ears? It has happened to me more times than I'd like to admit, but the latest one hurt the most. Maybe because of all the ones that had come before, but I'm not doing a good job of getting over this one . It fed my fears and insecurities just when they were starting to heal.  So, let me speak what I need spoken to myself: It's okay to be broken, you won't always be broken. It's okay to question and search, it means you're not giving up. It's okay to vent, it means you're trying to work through everything. It's okay to be silent, it means you're tired and in need of the rest that will help you heal. It's okay to not be okay  people! It is so easy to give up. Especially when Christian friends treat you worse than non-Christian...

The word, "repentance" used to make my skin crawl. I remember telling my youth pastor in Jr. High that I didn't have anything to repent of and he acted as though I was an even worse person for thinking  I had done nothing wrong. But I was a good kid. I never did anything that I was told was wrong. Ever. But this  belief  lead me to  years  of feeling guilty for things the Bible does not declare sin.  In my previous post ( breaking the shell one piece at a time ) I mentioned that I read the Torah in eight, life changing days. This was back in 2013. The year I toured across country and released my self-titled debut album. The year I almost became an atheist. The year I made peace with repentance.  I dug into the Torah to answer this one question, "what are sins?" I ended up with a lot more than I bargained for.  Not to say that I have all  the answers, I only have the answers I, personally, needed in order to heal. That b...

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 ...