My loss of smell post brain surgery

Hello, my name is Amy, and I am about 5 years post meningioma brain surgery.  My tumor was located behind my forehead and was about the size of 2 chicken eggs.  I thought I had been dealing with chronic sinus headaches, but after undergoing several tests, an MRI discovered this large, benign tumor.  An 8+ hour surgery removed the tumor, but sadly, it “ate” my olfactory nerve, and it will never grow back.

I am grateful to have 55 years of a life of smells and a great love of cooking.  It took me several years of denial, then sadness, then finally a very stubborn acceptance of this “black and white” world I now reside in. I describe it as living in a bubble, where I can see/hear/feel everything, but am denied smells/most tastes and the memories/emotions that go along with it.

When COVID hit, I was enlightened to know that anosmia was becoming a more well-known word that until previously, no one had really heard of.  The world was becoming more aware and empathetic to this affliction, or as I like to call it, this invisible disability.

I don’t cry as much as I used to.  I’m grateful to be alive, since not having the surgery would’ve had me go blind and eventually die.  I’m here to see my grandchildren grow and have learned that even though I’ve lost something so incredibly important, I can still survive.

I’m fearful of eating spoiled food, fire, gas and anything else our smell keeps us aware of.  I miss so many things most take for granted: new babies, freshly mowed grass, wet leaves in the fall, the smell of my dear husband.  The list could go on and on.

It’s hard when even family and close friends forget that I can’t smell. I get it, though.  I have a nose and it “works” ; it just can’t smell…so everyone forgets.

If I had to offer any words of advice to someone who’s recently lost this so very important sense, it would be that it helps to talk to others like us, and to realize that even though it hurts EVERY SINGLE DAY to not be able to smell, counting one’s blessings can help take the sting out of it.

Thanks for reading my story.