The Hope of Being Heard

Since we moved to Georgia in February of 2017, I’ve been getting bounced around from doctor to doctor. I get directed to one doctor, who sends me to another, who sends me to another. All the while, no one actually helps me and my symptoms get worse…

My cognitive function has declined, leaving me with little to no reading comprehension skills, a severely damaged short-term memory, and difficulty saying the words that my brain is thinking…among many other things. One day last week, I forgot where I was going, while I was driving. Because of all of this, these last 6-8 months have been some of the scariest months of my life. I’ve gone to doctors, expecting them to help me. Hoping, praying, and begging that someone…anyone…would be willing and able to figure out what’s wrong.

After my most recent visit with the last neurosurgeon, I felt so defeated. The neurosurgeon’s exact words to me were, “I don’t want to see you anymore. You’re shunt is fine, you’re just having headaches. Follow up with pain management.” Umm…what!?!? What is the point of of trying to get help from doctors only to be turned away and denied access to care? But I, reluctantly, agreed to try once more with with a neurologist.

So I met with that neurologist yesterday.

He. Was. Amazing.

I have to admit, because of all the medical experiences I’ve had thus far, I went in there on the defensive. I went in there with the mindset that he wasn’t going to help me. And boy, did he prove me wrong. Once I started talking, the emotions and anxiety all spilled out of me. The words kept spilling out as I was sobbing and my voice naturally just started getting louder. Finally, he stopped me and asked, “why are you yelling?” And he was right, I was yelling…and I really have no clue why. It wasn’t intentional; it was the result of months of frustration from being ignored and dismissed just spewing out. AKA, word vomit.

He looked over my previous MRI report and explained it to me, because the previous neurosurgeon didn’t. Those “headaches” I’m having are the result of a 5mm Chiari Malformation and a bulging disc at C2. He asked about my history and specific problems I might be having. He asked me about my sleeping patterns and took a look at my sleep log (tracked through an app on my Apple Watch) and told me that a some of my cognitive decline could, very well, be the result of long term sleep deprivation. He acknowledged that I have a severe amount of anxiety from not being heard by the doctors I’ve trusted to help me (instead of telling me that “if I treated my anxiety, my health problems would go away”).

When I talked, he listened.

I don’t NEED anyone’s validation about what I’m going through. Because, whether or not anyone believes me or helps me, what I’m going through doesn’t change. But having that validation doesn’t hurt either.

(Also, just a side note…the next person who tries to call my brain falling out of my skull, “just a headache,” might get throat punched.)

But you know what this doctor gave me…he gave me hope. He put together a plan of action. He looked me in the eye and said, “we’ll get you healthy again.” Now, I’m not really sure what “healthy” for me will look like. Medically/health wise, no doctor that I have seen has given even the slightest bit of hope that things can or will get better. I don’t even know how to begin to explain what it feels like to finally be HEARD after months of being ignored.

The pain isn’t any less. The cognitive function isn’t any better. And there’s no magic cure to make this all go away. But there is a plan. There are options.

THERE. IS. HOPE.

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