Chiari Malformation: How it Changed My Life

2019 was the year that forever changed my life; what I now can say was honestly for the better, but at the time, it did not seem as so. First, I started out having headaches countless times a month that ended in daily pain. The pain was so intense it felt as if my brain could at any moment burst through my skull, and in a way, it was. Then, that summer, I received a diagnosis of Chiari Malformation, which translates to my brain being too big for my skull.

After years of odd difficulties, MRIs, and inadequate medical care, I had finally received an answer, but what exactly did that mean? I had options for medication, surgery, lifestyle changes but picking the best option took one thing, knowing myself! So I chose to put myself first and figure out what would be best for my present and future health.

I prioritize sleep. Even though I am young, it does not mean I go like an energizer bunny. I actively take care of my mental health and secure my emotional safety. Daily check-ins are essential as I must assess my energy levels and not put more on myself than I can manage. There is a saying that “God won’t give us more than we can bear,” but sometimes, we put more on ourselves than we can oversee as humans. I had to learn to be kind to myself when the symptoms rear their ugly heads. When I have headaches and neck pain, I know my body is saying be still. When the overwhelming fatigue hits, I take that time to rest and indulge in my favorite activities like reading or watching a good show. Overstimulation is a real thing that aggravates brain fog and dizziness; I have learned to be extremely patient with myself. The balance issues that cause me to fall have taught me to slow down and take things step by step.

This condition has been a blessing in disguise for me. Yes, it is very scary to know I have a brain disease that has internally aged me. However, I am grateful. I am thankful for the life that it has forced me to live. It has pushed me to step into my authentic self. I have found that regardless of my circumstances, I thrive in routine.

My body is not the biggest fan of inconsistency and views it as a threat. When my body is at ease, it is nothing like having a schedule that helps calm the symptoms. Not hitting the ground running every morning has infused gratitude into my spirit daily by allowing me to take a deep breath and appreciate the beauty of a brand-new day. The days I struggle to get out of bed, I permit myself to rest, take stock in my life, and listen to what it is I need at that moment. Saying no to certain activities and events has proven itself to be a challenge but one I accept. I cannot be everywhere and cannot do everything, that is ok!

The best advice I can give to anyone struggling with an illness is to do your research, trust your gut, and accept yourself! Also, find a health care provider that makes you feel safe and heard. Your challenges are yours, and no one can tell you what to do or how to feel. And always remember to be kind, take your medicine, and drink your water!


Charlie Johnson

Lover of all things whimsical, I was born and raised in Muscle Shoals, AL. I am the shy quirky figure you will see in a bookstore with a bright smile and an extreme thirst for knowledge of all kinds. The woman who enjoys curling up on the couch on a Friday night with a delightful book and a hot cup of tea. I enjoy the rain and will often find myself dancing in it to bask in the ambiance of nature’s shower. I am a person who enjoys intimate experiences over monetary goods. Soulful journeys that awaken parts of my spirit that I have not touched are moments I live for. I am different and unique in every single way. And I will always remind people to be kind, drink their water & take their medicine.

 

1 Comment

  • Reply November 7, 2021

    Alicia Johnson

    Wow Charlie this was awesome! God gave your body the Soul he knew would care for it and he should be extremely proud though we all know he makes no mistakes. I have watched you “Grow” over the years and it is this moment I believe I have just seen you “Blossom” keep doing what you are doing! Even I am truly inspired today by you.

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