When I Lost 18 Years of Memories After a Surgery


Memories can be a funny thing.

“How do you just completely forget everything?” is usually the first question asked when someone finds out I struggle with amnesia. Amnesia is one of those things where we always think, “Well, it’ll never happen to me.”

Well, it did happen to me. 

I was 18 when I was diagnosed with Arnold-Chiari malformation, which is where the cerebellum of the brain sits too low and herniates through the opening at the base of the skull. I had a 15 mm brain herniation that was almost killing me, and we had no idea. Three weeks later, I had decompression brain surgery.

I remember waking up and not knowing what happened, where I was or who anyone was for that matter, other than the last two people I spoke to before surgery. I was terrified, just had a hole drilled in my head, and remembered absolutely nothing from the previous 18 years. After a couple days in the ICU and still not remember anything, the surgeon told us I may have anesthesia-related amnesia. He reassured us that everything would be fine, and that only six percent of young people experience amnesia last more than three months.

I’m part of that six percent.

It’s now been six years since I had my surgery, and I’ve had to relearn who everyone is, even my own family and my closest friends. I couldn’t tell you what my pets’ names were growing up, what my childhood bedroom looked like, or any of my elementary or middle school teachers’ names. Looking at old photos, I still can’t name most of my friends or family in them. What “memories” I have from before that surgery are what people have told me.

But what I do know is, I’ve spent the last six years making new memories with my now wonderful husband, two children, and supportive friends and family. I cherish every memory I get to make with them, and we take a lot of photos and videos. We know someday I may need a decompression surgery again, and we know I run a risk of losing everything again. Amnesia is very real and very terrifying. But it’s not the end, it’s just a whole new beginning.

We want to hear your story. Become a Mighty contributor here.

TOPICS
JOIN THE CONVERSATION

Related to Arnold-Chiari Malformation

Crafting homemade Valentine's Day greeting cards

What Every Teacher Needs to Hear on Valentine's Day

I didn’t get diagnosed with autism until I was 50. I went all through my school years simply as “the weird kid” who never fit in, and no other children wanted anything to do with me. Valentine’s Day was about three weeks away. My mom was very artistic, and my fifth grade teacher asked her to [...]
19 Secrets Families With FPIES Wish Others Knew

19 Secrets Families With FPIES Wish Others Knew

Food protein-induced enterocolitis syndrome (FPIES) is a rare type of food allergy affecting the gastrointestinal (GI) tract. “The symptoms often include profound vomiting, diarrhea, and dehydration, which can lead to severe lethargy, change in body temperature and blood pressure,” according to The FPIES Foundation. It can be difficult to obtain a diagnosis for FPIES because unlike [...]
back view of two female friends hugging and looking out at the sea

10 Ways to Support Your Chronically Ill Friend

Chronic illness can be quite traumatizing, especially if it is an invisible and poorly understood illness. Fighting for a diagnosis. A parade of physicians who can’t help me. Friends and family who can’t possibly understand what my life feels like now. I am terrified, and don’t know where to turn. There are not many specialists who can help [...]
Photo of sweater that says "I'm having a meltdown" and features a snowman

People in the Autism Community Say Asda's 'I'm Having a Meltdown' Sweater Is Offensive

People in the autism community are not happy with a new winter-themed sweater from U.K.-based retailer Asda. Many say the children’s sweater, which reads “I’m having A MELTDOWN” trivializes the meltdowns children on the autism spectrum face. On Monday, a Change.org petition was started asking Asda to remove the sweater from its store and website. “Anyone… [...]