strength || 2018
I’m not really one for New Year’s Resolutions. Mostly because I know I won’t follow them and then I’ll be mad and I’ll give up. But I do think it’s important to reflect on the past year, months, weeks, days in order to move forward - whether you set goals, resolutions or not. It’s important to reflect back on what you’ve accomplished, what you wish you had, what you went through, how you overcame the struggles, how you didn’t, what you did well, what you didn’t do well, what you enjoyed, how you spent your time, money, effort, and the list goes on.
I’ve never really reflected so much on a year as I have on 2018. I went through a lot personally and have grown, changed and have been spiritually moved by everything around me this past year. If I could sum up 2018 in one word, it’s Strength. A word I know I didn’t come up with on my own but it’s how God moved me and used me throughout the year.
I started off 2018 ecstatic! I had ran a half marathon a few months prior, went to Vegas with my dad for the NFR, had an amazing Christmas break, I was working at Corporate Buckle as an Assistant Buyer and I was moving to Europe in March. I was going to be gone for three months and I was excited but nervous to see the world God created. I had so many reasons not to go but looking back, I can’t imagine graduating without ever experiencing everything I did! (There’s three whole months worth of blog posts on here about Europe - I don’t want to get into too much detail here). BUT it was some of the greatest three months of my life! On the outside, everything was great, but on the inside, I was holding in so much.
While working at Buckle I noticed the intense fatigue and headaches I would have daily. No matter the amount of sleep I would get the night before, the amount of water I drank or coffee I didn’t, I couldn’t shake the pain. The more I ran the more it hurt, the lights at the office hurt, the way I sat hurt. Anytime I coughed, laughed too hard, bent over to pick something up, sneezed, etc. The pain was progressively getting worse but I didn’t want to have to run a series of tests, MRI’s, CAT scans, all before I left for Europe. I didn’t want to not be able to go because even then, I knew something was wrong.
Really it all started back in October of 2017. I fiercely remember going to my night class and having an excruciating migraine - I hadn’t had an actual migraine in years! Chronic headaches were normal, but not a migraine. I had a friend pick me up from campus and drive me home and as migraines make you do, I threw up on the ride home. I stayed in bed the next day and thought it was fine. That’s when it all started. The constant, weird, headache pain in the back of my head. I tried cutting coffee (worst month of my life), kept running, started doing more yoga, I was already drinking tons of water while training and eating healthy - I tried more chiropractic care, ice, more sleep - ANYTHING I could think of. My focus was lacking, my energy was gone but I truly believed it was because I was training so much for the half marathon.
After I ran, it still progressively got worse. I came down with I still don’t know what while in Vegas and had to leave the George Strait concert (proves how sick I was, I cried for three days after). When I got home I came down with the common-Christmas-break-cold/sinus-infection. But it lasted three months. Fast forward to the end of February 2018, I had to get a physical done before I went to Europe and my doctor put me on a steroid and Amoxicillin to kick that sickness before I left. The only time in the last four months that my headaches went away was when I was on the steroid. I think that’s when I believed something internally was wrong.
Even though, Europe was an absolute dream. Reading back through my blogs I tell myself there’s so much I would’ve done different but it all happened how it was supposed to. It was some of the most memorable, life-changing, earth-shattering three months and I would do it all over again. I visited 11 different countries, over 23 cities and made 25 new best friends.
While in Santorini on Spring Break in April, I came down with yet another terrible cough. I never truly got over my sinus infection before I left but I was also traveling every single weekend and I never once got a good night sleep. I was trying to stay healthy but eating whatever Europe has to offer is pretty easy to do. The gym was kind of expensive so I was doing yoga in my room and ran short distances when the weather was nice. I went to the doctor when I came back to the Czech from Spring Break and found out I had Bronchitis. I was on serious antibiotics and I slept 16 hours straight for more than a few nights in the last month I was there. I was falling asleep at supper because I was so tired. I went to Ireland on my own on my trek home and I wasn’t really noticing the headaches as much because I was on so much medication.
Coming home was complicated. I fell into depression and constant anxiety. I went to the Doctor yet again only to find out that I had Mono, which explained why I was sick so much those last six months. We determined that was the cause of the headaches and it did make sense. Last summer I felt as if no one believed that my headaches weren’t just headaches, that I really was going through something. I was constantly tired, working two jobs, constantly worried the world was against me and I was going to lose everyone. I came home to a life that doesn’t change - I had changed so much and I truly felt that I didn’t fit in anymore, like I didn’t know who I was. LOTS of tears were shed, prayers were prayed and I tried so hard to fit back into the world I thought I knew.
In desperation to make everything normal again, I went with the flow. I tried not to complain about my pain, kept on working, coming home, driving back to Kearney, moved apartments, just trying to find myself and where I lost her.
Before school started again in August, I got sick AGAIN. This time with Strep but it only lasted a week. At that point I knew it wasn’t just Mono. By the end of summer, Senior-Session-Season ended, wedding season was in full swing and football season was about to start. I found out I couldn’t yell from the sidelines, it only worsened the pain to the extremes. Holding my camera for too long with my long lens on became a workout. I found this out when I shot a wedding in September - one that almost crippled me to the point of going to the ER. I begged and pleaded but again, it was only a headache, nothing more. That was my breaking point and that’s when things really took a turn for the worse. Luckily, it was the beginning of the end.
Getting out of bed in the mornings became nearly impossible, I was constantly in excruciating pain, I could no longer train for my second half marathon, lift, do any exercise that wasn’t normal, daily life. There were several days I physically and mentally could not get out of bed. Aleve, Advil, Excedrin, muscle relaxers, chiropractic care, specialized physical therapy, NOTHING was helping at that point. That’s when I finally consulted in a friend of mine who is a radiologist. Through my doctor-internet-research, I had determined I probably had a herniated disk, especially because of the fact that being on the steroid was all that relieved the pain.
It wasn’t until a high school friend of mine posted about her daughter getting an MRI done on her head after a fall that it all made sense. Her daughter had something called a Chiari Malformation, not rare, just not something that not many people have heard of. After more internet research, it was the only diagnosis that covered all of my symptoms.
The more I talked about it, the more no one believed me - I was fine, it was just a headache. Until my friend begged me to get an MRI and I begged my mom to let me and told my Doctor I needed to see a Neurologist, is that exactly what we found. I had one MRI done, left the hospital, was about to pull off the interstate at Paxton, only to get a call from the hospital asking me to drive back. They found something and they needed to do more scans. Alone, I cried and pleaded with God - I thanked Him for not making me crazy but asked that whatever it was, it could be fixed. As cancer is something that has a deep, dark history on both sides of my family, that option was not yet ruled out. As I walked back into the hospital, all of my emotions came out - I was thankful they found something but was oh so scared of what it could be. I prayed and worshipped through having three more MRI’s done. My doctor wasn’t at the hospital that day so we had to get the scans read from different doctors at another hospital. The “C” word still wasn’t ruled out but they determined I had two fluid cysts in my spinal cord, that’s all we really knew. If it wasn’t for Dane and Jamie, I wouldn’t have made it through that day.
The next step was to find a Neurologist/Neurosurgeon that was both trusted by my doctor and covered under our insurance. My dad and I sat in the waiting room and luckily found one fast that could see me the next week (so rare). Because my mom had recently taken a job in Omaha and was living in a condo part time, Omaha/Lincoln doctors were our first choice and that’s where we found Dr. Long.
The next week was one of the longest weeks I have experienced. I was stuck in a fog of not knowing what to do or how to feel. My best friend from Alabama surprised me, my teachers were incredibly supportive and of the small amount of people I told, God’s heavenly host was certainly surrounding me.
“Hi Bailee, my name is Dr. Doug Long and you have what’s called a Chiari Malformation and although severe, we can do surgery to fix it.” We had so many questions but were so thankful it was the official diagnosis. We scheduled surgery at the end of the semester and I just had to make it through for one more month. I knew in my gut it wasn’t life-threatening but not knowing plays a whole new game on your mind. I was exhilarated that something was going to be done about my pain, it was going to get better and I officially wasn’t crazy! Someone finally believed me - for the first time in a long time, I felt that I wasn’t alone.
Chiari Malformation is a condition in which the brain tissue extends down into the spinal canal. It’s usually present at birth, which mine is a birth defect, but symptoms don’t usually show up until later in life. There are roughly 200,000 cases/year in the US. I recently read that someone compared the symptoms of Chiari to living with a concussion and that’s about the closest-real-life situation it can be compared to. The pain, light sensitivity, dizziness, fatigue, losing feeling in your extremities, nerve damage - there’s nothing like it. Throughout the entire process I have met, been introduced to and found many others who suffer from the same disorder. Going from not knowing what Chiari Malformation was, to seeing that I’m not alone is a mind-boggling feeling of not being alone.
On December 6th, 2018, I had a Suboccipital Decompressive Craniectomy where they removed part of my skull at the base, replaced it with a bone graft from another part of my skull and removed part of my C-1 vertebrae. (My brain tissue has pushed out of my skull 1.6 centimeters and was touching my spine). The surgery was a success, I was in the ICU for one night, on the Neuro floor for two more days and stayed in Omaha for another week and a half until I got my staples removed. The pain was excruciating but it was fixed and I was on the road to recovery! These last four weeks have been full of pain killers, rest, throwing up, saltine crackers, impatience and a longing to get back to my active self. It’s been a one step forward, two steps back kind of recovery but it’s made me slow down. I haven’t been rushing around and instead taking it all in. God’s given me a second chance - He’s given me my life back. I will go in for another MRI in March to make sure the fluid that was backed up in my spinal canal is back where it’s supposed to be.
Writing it all down it’s easy to see where God taught me Strength. In:
- Who I am because of Him
- My God-given abilities
- Being discouraged
- My feelings
- Sharing those feelings
- It’s okay to wear my heart on my sleeve
- Being myself
- Not apologizing when it’s not necessary
- New beginnings
- Letting go
- Health issues
- Sharing about my health issues
- Sharing about my life
- Caring less and less about others opinions
- Staying true to who I am
- Being more positive
- Making positive life changes
- Being strong in who I am
- Loving myself
- The adventurous life God has let me live
- My future and what it holds
God has moved in a ways I could have never imagined since my diagnosis and He hasn’t stopped since. I have felt closer to Him than I have since living in Alabama. I have felt more peace, freedom heartache, disappointment, discouragement, loss of self worth, depression, pain and so much more in this last year but if I have learned anything, it’s that God NEVER fails to show up. My mom struggled with taking her promotion and having to find a condo in Omaha. She found one that was completely furnished, three blocks from work and although uneasy about living in a place with someone else’s stuff, it turned out to be a blessing in disguise - in many more ways than one.
In 2018 I have walked so much more by Faith than by Sight. I have learned so much more about myself and who I’ve become and who I want to be. I have learned patience, I regained a deep love for myself, more passion, more understanding, more of letting go and living in the Peace that only He can give. It has not been easy, it was a roller coaster of a year. BUT GOD NEVER FAILS! I asked Him countless times, “Why?” - I yelled out to Him in anger. I lost touch with God. I pushed people away. BUT so have so many people in the Bible and that brings me comfort. But I could have never have done this on my own. He is my ultimate care-giver and for that, I will always be healed.
Have you ever watched “It’s a Wonderful Life?” My family and I watch it every Christmas and that movie perfectly portrays it all. Looking forward to so many things but looking at what’s happening around you as setbacks. From falling into a depression to God showing up when you need Him most. Realizing that all along He was there. It was all for a purpose. **I’m going to ruin the end if you haven’t watched it** The end of the movie, when he thinks he’s all alone, everyone is there for him. That’s how I’ve felt - SO many people have reached out to me and given me even more hope throughout my diagnosis, surgery and recovery. It takes a village and I’m beyond thankful to be apart of it.
So as I write this long, drawn out recap of my 2018, I don’t want you to feel sorry for me. I want you to always remember this:
- That God is there. Even when you aren’t searching for Him, or you don’t want to talk to Him, He’s there. His hand is always stretched out, all we have to do is reach back.
- Despite what you’re going through, don’t stop fighting. Follow the calling God has on your life, go see the world, keep going, even when it get’s hard, God ALWAYS has a purpose. Even if you don’t yet know what that purpose is.
- Don’t lose sight in His word, it’s the only way our eyes are truly opened.
- Don’t. Stop. Praying. He hears you!
- Listen to your body and what it’s telling you. Don’t be a hypochondriac but if something is really wrong and you don’t feel right, don’t wait. Get it checked out - even if people think you are crazy or that you’re fine, YOU are the only one who knows what’s going on in YOUR body.
- Find your village, your tribe, your crowd, your circle, your homies - not the ones that just want to party with you, but the ones who want the best for you. The ones who will always be there. The ones who push you closer to your calling and closer to God.
Romans 8:18 - The pain you’re suffering now can’t compare to the joy that’s coming.
My name is Bailee Schow, I have Chiari Malformation, and this is my story.