AN Awareness Week 2019

PSA: this post is not craft related.

Acoustic neuromas are slow growing benign tumors that develop on the main nerve leading from your inner ear to your brain. This nerve influences your balance and hearing; pressure from the tumor can cause hearing loss, tinnitus (ringing in the ear), balance trouble, and problems with facial paralysis. ANs account for 8% of all brain tumors.

If you know me personally then you know that a little over two years ago I was diagnosed with an acoustic neuroma (also called a vestibular schwannoma). I previously had a blog devoted to all things Acoustic Neuroma and then I deleted it. I felt like I was dwelling by having the blog. I’ve struggled with having a “diagnosis” that I don’t want, I imagine that’s most likely the case for anyone. I try to hide from it by pretending it doesn’t exist but then things like “Acoustic Neuroma Awareness Week” happen and it’s in my face all day every day for at least a week in May. May is also Brain Tumor Awareness month so once AN week is over, there’s still the blanket brain tumor awareness month to get through. That’s not to say that I’m ungrateful for having a community of people with the same diagnosis. It’s incredibly helpful to know there are others going through what I’ve been through and continue to experience.

Once I committed to a treatment I think I thought it would all be over after that. I would have the procedure and then I would be “normal” again. But let’s be honest, was I ever really “normal”??? I had stereotactic radio surgery (radiation). The idea behind radiation is that it will ideally stop the tumor from growing any further and possibly shrink it. My most recent MRI showed that the tumor had pulled away from my brain stem a bit so that was super exciting.

Symptoms or side-effects or super inconvenient annoyances (why romanticize it) have continued and increased. In November I got a hearing aid for my right ear. However, I very much still struggle with hearing speech. I’m someone who says “I’m sorry, what?” over and over in a conversation. I feel rude and embarrassed and it annoys my kids and people forget that I can’t hear well and will talk to me from another room or across a room. It doesn’t seem like a big deal but it leaves a feeling of isolation and defectiveness. If I’m in a crowded restaurant or some other place where lots of people are talking, I can’t hear the person/people I’m with. The sound all blurs together with the background noise. It’s embarrassing.

I wanted to post something positive for AN Week but it’s just not where I am this month. I’m happy to feel like I’m on the other side of this but I’m still learning how to deal with it. Hopefully next May and the May after that, and the one after that will be a bit easier than the one before.

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