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Dear Chiari Malformation: You Can't Take Everything From Me

Dear Chiari,

When you first showed up on my brain scans, I was told you were normal. When I asked about you, I was told you were incidental. When I saw the numbers increasing, I was told it didn’t mean anything. When I finally asked a doctor what to do about you, I was told you weren’t really there. When I needed a reason for my headaches, I was told it wasn’t you. When I was upset that there weren’t any answers, I was called crazy. When I asked my doctors if you were causing all my issues, they told me you couldn’t do that.

But you see Chiari, you were the one doing it. When my father told me I was “crazy” for wishing there was an explanation, it was you the whole time. When I took way longer than all the other kids to learn how to ride a bike, it was because you were the one steering. When I had searing pain through my head, it was you holding the hammer. When I would faint, it was you who knocked me down. When I couldn’t walk, it was you holding my legs down. When I couldn’t feel my limbs, it was your fault. When I presented like I had a stroke, it was you pulling the strings. When I was diagnosed with depression and panic disorder, you were the one in my head. And that, Chiari, is the problem.

My whole life I was told my pain was “in my head.” I was hospitalized psychiatrically. I was told I had conversion disorder. I was put on meds. And then some more meds. I saw therapists. I saw psychiatrists. When I saw neurologists, I was told you really weren’t doing anything. But that’s the problem right? Because you truly were in my head.

You caused so much pressure to build up. Not just in my head, in my relationships, and in my schoolwork, but even in my friendships. You ruined relationships I had with family. You made me drop out of college. You pushed me to stop dreaming. You were the reason for so many things.

But while you were the reason for many things, there are things you didn’t do. You were not the doctors who told me you didn’t exist. You weren’t my family who told me you weren’t real. You weren’t my classmates who told me I was just stressed. You didn’t laugh at me when I fell off a bike or tripped on a rock. You never failed to show up, you were always there. And now looking back, it’s nice to know you were there.

Thankfully someone finally saw you. It took 12 years, countless brain scans, multiple hospitals, an exceedingly high number of ER trips, multiple meds, and one good doctor. A doctor who finally saw you. A doctor who didn’t let you hide anymore. And while the surgery didn’t really remove you, it helped remove damage you caused.

It’s nice to know you were the reason for many things. But I know you’re still hidden and even with the surgery, you’re still not seen. Just because I had the surgery doesn’t mean you’re gone. The pressure is gone but recovery is long. There are many who don’t see you. They don’t see how you can still mess up my path.

You put me in a wheelchair. You took away my ability to drive. And slowly, little by little, I’m getting it back. But it’s hard. It’s hard to know what I missed out on because of you. It’s hard explaining that because of you I have irreversible damage to my body. That while I did I have surgery, recovery is a long road. It’s hard admitting I’m still tired, or that using the wheelchair helps with long distances. And the hardest part is knowing that you still have some control over my life, no matter how I feel.

But Chiari, there’s a lot you couldn’t do. You couldn’t ruin the relationship I have with my mom. You only made it stronger. You couldn’t tell me how to think. You can’t stop me from telling the world about you. You couldn’t stop me from making Dean’s List. You couldn’t stop me from publishing a scientific paper. You didn’t stop me from becoming president of theater. You didn’t stop me from running my own charity, or making the world more accessible. You didn’t stop me from connecting with old friends. You never took away my love. My love for my mom. My love for my dog. My love for my sister. My love for helping others. My love for so much more.

Chiari, you and me are never going to be apart. But for now, and however long it will last, I like the break you’re taking. The longer you don’t want to cause issues, the better. You already left damage I have to deal with; maybe a break will be nice. You aren’t going to be seen by a lot of people, but I know you’re there. The people who are important know you’re there. And I think I’m doing just fine for now.

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