When Things Need to be Pushed Back for My Health to Come First 

So much of life is about prioritizing. There is limited time in the day, and while I believe it is possible to accomplish a lot, I don’t think a lot can often be accomplished at the same exact time. Sometimes, things have to be set down, often unexpectedly, so other things can be prioritized. 

But that doesn’t necessarily mean saying “no” to things. Often it means saying “not yet.” You can feel powerfully committed a goal, and realize it’s not the right time to pursue said goal. It can be very painful to admit to yourself, and even more painful to admit to others, that you’re going to put something on pause in order to focus on something else. Maybe you’ll even feel like a failure: even if you know in your heart, 100%, that it’s the right thing to do. 

This is the place I am right now with the novel I am planning on self-publishing.  I 100% am passionate about self-publishing my novel project. Panic Cat, which will be the first in a four part series, seeks to raise awareness and destigmatize issues of clinical anxiety and mental illness and reframes my protagonist’s chronic and mental illnesses as her superpowers rather than her weaknesses. It is a project I am incredibly passionate about, and I know I will continue to pursue its publication with vigor in 2018.

However, my goal up until recently was to get it self-published by the end of this year or the beginning of next, and I now see that the goal, though admirable, needs to be set aside so I can focus on something that is more pressing right now: my health. I am waiting to see if I will need to have brain surgery for my Chiari Malformation at the end of this year. Meanwhile, I am focusing on that, and on my body and symptoms and management, while also having my hands full with continuing to thrive to the best of my ability in my work as an educator, in my faith as a young Christian woman, and in my family life as a devoted wife, mother, daughter, sister, and friend. 

It is not an easy or natural thing for me to press the pause button in my life. I graduated from college a semester early. I completed a master’s degree at 25. I was married and had a baby during that time, and was hired into my dream job. Check check check. My goal has always been to climb ladders, check off boxes in my personal and professional lives, get things done as quickly and well as possible. And then…i got sick. I’m not going to sugarcoat it, because in a lot of ways, sickness and disability are horrible. But there is an upside, and that is that it forced me to slow down and focus on what is truly, truly important. Illness forced me to prioritize. And right now, my priority is my health. 

The thing about prioritizing is it sometimes feels like quitting, even though it’s not. Sometimes it feels like failing, even though it’s actually the opposite. Sometimes I worry that this means I peaked at 25, and my success is downhill from here. But then I have to remind myself that there are so many different definitions of success. And knowing myself and my body and my own limits and needs is just as successful and inspirational as publishing a book. I am young, and have plenty of time to meet other goals. But I only have one body, and I need to focus on treating it as well as possible. So it needs to be my priority right now. Everything in its own time.  

To my readers who are looking forward to reading my novel: thank you so much for your understanding. I will continue to pursue publication, it will just be on a different timetable. 

September and My Constant Companion: My Chronic Pain Awareness Story 

“You’re never as alone as you think you are. People don’t tend to broadcast certain kinds of pain, so you often don’t see it.” 

Last week, I wrote about my Chiari Malformation story for Chiari Malformation Awareness Month. You can read it here. Chiari is a brain condition that falls under the category of rare disease, but is actually more common than people realize. However, few talk about it. It affects me with chronic pain every day. 

It is also Chronic Pain Awareness Month, so I decided to write a separate post specifically about my battle with chronic pain. I don’t honestly talk about my battle with pain very much, and haven’t written a post specifically about it yet. Chronic Pain affects millions of people every day. Back pain is the 2nd most common reason people go to their doctors after colds. And yet pain can make people–especially young 26 year olds, supposedly in the “primes of their lives”–feel terribly alone. That’s why I’m writing this post: to remind people with painful conditions that they’re not alone. 

I have two related conditions that cause lifelong chronic pain, Ehlers Danlos Syndrome and Chiari Malformation. In my previous post, I explain them both using child-friendly metaphors, since I am an educator who works with children, and also a mother. I also came up with an educational metaphor for my chronic pain. 

Imagine that everyone has an invisible stoplight above their heads that tracks their pain levels. Green means “Go”: no, or very little pain. “Yellow” means “slow down”: I’m in pain, moderate and often crippling levels, but I’m still able–or at least have–to do the regular tasks in my life, if at a slow, gentle pace. I work, I parent; but with every motion, I am aware of pain. Everything I do sends up a yellow flare: “slow down! You are in pain!”

And then there is red: “stop!” This is when one is in so much pain they are unable to do anything else but think about the pain.  

I mostly live in yellow. There’s a whole lot of “wait” that goes on with my–and many other people’s–chronic pain. 

My pain scale also has adjusted as I have learned to live, necessarily, with chronic pain as my constant companion. 

Here’s the thing: I’m never truly free from pain. I never don’t have a headache. I suffer from costochondritis, or chest wall pain that has been severe enough to make me think it was a heart attack, almost daily. I have had several severe pain attacks that have sent me to the emergency room, but my day to days, when I go to work, run around with kids, have fun, and live out my call are never pain-free. 

My pain makes me have to make hard choices. Right now, the hardest pain related choice I’m facing is brain surgery on the horizon for my Chiari malformation. The only way to possibly reduce my Chiari pain long term is through surgery, called a Decompression, and I have already reached the peak of what other methods, such as medication and exercise and diet, can bring me in pain and symptom relief. But surgery is not a cure, and in some cases, surgery opens the gates for more pain and more surgeries. 

And on top of this big pain related choice I’m wrestling with–update to come, I make little pain related choices every day. Should I run around with my daughter and risk being in extra pain for another three days? Will taking an extra shift at work make my pain keep me up with painsomnia the next night? While my pain doesn’t define me or my life, it does factor into many of the choices I must make, big and small, on a daily basis. 

While I have learned ways to reduce the pain, none of them completely get rid of it. Some days, the medications I take really help. Some days, exercise does; some days, rest does. And some days, none of these things help. Some days, I just push through and hope the next day will be better.
Often, I have a positive perspective about my pain. I admit, I don’t always. Some days, my pain defeats me. I let my pain get the best of me, and I feel like I am nothing other than my pain. It also makes me feel very alone, even when I am surrounded by others. And I am sure I am not the only one who feels this way.

There is a print of a wolf, done by the incredibly talented The Latest Kate, that hangs behind my dresser in my bedroom. The white behind the wolf, which you can see above in this post, is “You’re never as alone as you think you are. People don’t tend to broadcast certain kinds of pain, so you often don’t see it.” 

This quote serves as daily inspiration for me. Pain makes me feel unnecessarily alone so often. People are scared to talk about their pain. I’m here.  You are never alone. 

I encourage people, if they feel open to doing so, to share their pain stories with others. Vulnerability and honesty is one of the best things we can do to deal with our chronic pain. No, it won’t take it away, but it will remind us that we are not alone in our pain. We are all human, and all together. We can live our best lives despite our pain, and it is hard, but we can do it: together. 

September and My Broken Brain: My Chiari Awareness Story 

September is Chiari Malformation Awareness Month, as well as Chronic Pain Awareness Month. I experience Chronic Pain due to both my Chiari Malformation and my Ehlers-Danlos Syndrome (which has its own awareness month in May.) I will be writing a separate post for Chronic Pain Awareness month on my own experience and relationship with Chronic Pain, but this post is specifically on my experience and journey with Chiari Malformation. I have mentioned that I have the condition regularly in my blog, but I have not really talked in depth about it or about how completely it affects my life. 

Arnold-Chiari Malformation, or simply Chiari Malformation, is a condition where brain tissue from the cerebellum extends too far into the spinal canal. Usually, as in my case, it is a birth defect, but it is not discovered until later in life, on an MRI. It is often asymptomatic, but can just as often cause very extreme symptoms, as it does in my case. Symptoms include headaches, neck pain, coordination issues, dizziness, vision, voice, and throat problems, and various complications that can arise, including fainting and blacking out: which is how I first discovered that I had Chiari in 8th grade. 

It has taken a while for me to come up with a teachable metaphor to explain Chiari Malformation to young people. I believe it’s important to be honest about my medical conditions both with my daughter and those I teach. I have found it to be such a great character building tool, both in promoting empathy and teaching them they’re not alone, since so many kids have health conditions like asthma, allergies, and disabilities, and it’s really inspiring for them to see a teacher who has conditions too but still plays with them and teaches them. 

I explain my other condition, Ehlers-Danlos Syndrome, as my body being like a chair held together with bubble gum instead of glue. Chiari is like hard boiling two eggs, shown in the picture I drew above. A non-Chiari brain is the regular egg. A Chiari brain is the overboiled egg, that has some extra egg hanging out of the shell. In a body, it hangs into one’s upper spinal column.

My Chiari story is a strange one because it is a story of being diagnosed, forgetting I was ever diagnosed, and rediscovering the diagnosis years later. I had migraines from an early age: really, as long as I can remember, I have had severe headaches on and off, to the point I would vomit they were so bad. And I had a bit of blacking out upon standing as well, but I’ve always been quite tall for my age, and my mom had it too, so we figured it was just a blood pressure thing in me like it was in her, nothing to really be concerned about. I was regularly seeing doctors all through this time, who agreed. 

But then, in 8th grade, I switched from playing the trombone in band to playing the tuba, and for this tiny girl to start playing a huge instrument was the trigger I needed for my birth defect to really rear its head and start being seriously symptomatic. When I fainted during a tech rehearsal for a musical I was on props crew for while lifting something–Chiari is often made worse by bending down and lifting–I got an MRI in the ER, and they discovered my malformation. 

Chiari Malformation is a lifelong, incurable condition. It is also not dependant on the size of the herniation, or amount the cerebellum is extended into the spinal column: one can have a large herniation and not be symptomatic, or a smaller herniation and be extremely symptomatic. Surgery can be extremely helpful for some people, and for the most part carries few risks, but is not a cure. Many develop new symptoms, or need repeat surgeries. Because of this, despite meeting with a renowned pediatric neurosurgeon and Chiari expert in another state, my parents decided to not go through with the surgery, and together with my medical team and symptom management hoped that I would outgrow my symptoms. 

And, seemingly miraculously enough, it seemed like I did grow out of the symptoms. I stopped seeing neurologists and neurosurgeons, and my doctors in MI completely. I moved several times and never got my full medical records transferred. And I completely forgot about my 8th grade Chiari history when I started having terrible migraines shortly after the birth of my daughter. 

Since the symptoms were so different, my mom, who remembered my Chiari, unlike me, didn’t connect the dots and remind me of my diagnosis. Over a year after the migraines, and later horrible all over chronic pain and many other symptoms, I was misdiagnosed, in July of 2016, with fibromyalgia. 

The dots were finally connected in December of 2016, when I was 25 years old: over a decade after I was originally diagnosed. Now, at 26 and still extremely symptomatic, and having reached the limit on what we can control with other symptom reduction methods such as medication, surgery seems our only potential option, and I am leaning towards it, consulting experts and making plans. But it’s still not an easy decision, as a mother, an educator, someone who knows that it’s not an easy fix. I want to live my best possible life to live out my call; for my family, for all my kids, biological and those I teach. Will surgery help with that? It’s something I think about, and pray about, over and over again. 

Until then, I believe it’s so important to raise awareness about Chiari. It may not be well known or extremely talked about, but it is more common than you think, and what the Chiarians in your life could use is awareness and support. Each day with this illness is a battle, but I am convinced that if I work hard enough, I can find the teachable moments in it, both for myself and for those for whom my life will hopefully inspire: especially the next generation I teach.