A Journey to Happiness

It’s been a year!

A wild, crazy, unexpected, chaotic year!

If you do not know what I am talking about,

Do not worry! I will fill you in.

On August 26th,2022 I chose to have my right vestibular schwannoma removed, therefore losing my hearing along with most of the tumor.

Now, an entire year has passed and of me being a Deaf queen!!!

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In all honesty, I could not have predicted the outcome of surgery, the recovery, or my future post removal.

To prepare myself emotionally for the worst, I decided if I kept my expectations low, I wouldn’t become depressed or disappointed when something goes wrong.

That mindset helped me through some very dark moments while at the ICU in Boston. After I got back to Iowa, I was prepared to accept whatever disappointments I would face.

However,

Never did I expect the surgery to be great, the recovery to be extra rough, and to hear again,

but it happened.

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In June, I FINALLY went back to Boston for my post op appointments, to get my ABI (Auditory Brainstem Implant) activated, and see my main doctor for my new care plan.

You see, the surgery I had last year was big, but I’m not out of the woods yet. It’s not the only brain tumor in my head.

I have lots.

To control these tumors, I am heading back to Boston in December. The plan? I’ll start a new chemo.

It’s unfortunate because there are currently only 3 options to fight these monsters: chemo, surgery, radiation.

None of these options are guaranteed to work. Each carry a heavy weight in possible side effects. Most likely it will end in surgery. Another non-surgical/medicinal option is the “watch and wait” routine. Basically it’s exactly what it’s called: we watch the tumors grow (since nothing stops them!) and once they are too big or causing issues, it’s time to operate. Most of the time we are stuck in a Catch-22 situation; there really aren’t the best and safest options to choose from.

I did not expect that I would restart chemo so soon, so that was a bummer but a major positive from this trip is that my ABI works!

I can hear again! I still need to transcribe to understand people, but I can hear noises and my voice again!

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Since regaining sound, the fact that I can hear again, is incredible, but sent me into a “what the fuck” ( My mom doesn’t like me saying the F word in these posts but idk how else to describe this experience lol) emotion.

I fully believed the ABI wasn’t gonna work as well as it has. I spent years grieving and accepting I would be completely Deaf one day. Years telling myself that surgery would go bad, I would change as a person, and nobody would like me. The surgery was successful, my life isn’t over, I can hear agaun, I was sad for so long for nothing. What the fuck.

A year out, and I’m pretty much back to my baseline from before surgery, which is amazing! Everything went well. Life is good. My family loves and supports me. I am so lucky.

So, with everything going so well, I should happy right?

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Reaching back into my brain, from my college days in ethics class, we discussed happiness and how obtaining happiness is a big life goal. Not like fleeting moment of happiness or joy but the real deal:hitting Nirvana.

When I first learned about it, it deeply resonated with me.

Actually, I became a little obsessed.

Realistically, I knew a person could not be permanently happy all the time. I just wanted to find my own version of peace, which I considered depended on my happiness.

During this point in my life, I was 19 and dealing with chemo and accepting my future deafness. Figuring out my happiness was everything to me. I needed something that felt concrete; that I could hold on to since my life felt so out my of control.

After thinking long and hard, I figured out what I need to be happy: to survive surgery (emotionally and physically)

Fast forward to the present, I’m Deaf. The surgery was extremely successful, sure recovery was hell, but my facial nerves and vocal cord were saved. I can walk, talk, and be independent.

And even though I have reached my idea of happiness,

I’m not happy.

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Instead, I feel guilty.

So guilty.

feel guilty because I always thought once I had surgery, everything would be better.

I feel guilty for not being happy

I have so much good in my life: I’m so unbelievably lucky and privileged and yet I’m sad.

Why am I sad? Am I ungrateful? Am I a terrible person for feeling this way?

After I got back to Iowa, I could not eat, walk, or be independent. I was so focused on my physical health and recovery, I put my emotional well-being on the back burner. The negative thoughts, anxiety, irritation, and depression came gradually.

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Earlier in the summer I was showing signs of depression, and instantly acted. I had therapy session weekly and upped my medication. I didn’t want to lose another summer to poor mental health again.

So right now, I’m better, not great but better than I was.

What I realized is that the mindset I adapted before surgery, to protect myself from potential upsets, made it difficult for me to accept my new reality.

I’m disassociating.

I’m here, but sometimes it doesn’t feel right. I can be in a good mood one moment and then have sudden awareness of all the shit I had to go through to get to where I am. It’s hard to describe but it feels like I won a war against my body, and I am just dealing with the aftermath.

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Both my therapists have been amazing at helping me navigate through this challenging time.

Survivors guilt, grief, and depression after a major surgery is common.

To get better, I need to give myself grace and not be so sad that I feel the way I do.

I’m not a bad person, I’m not an ungrateful person, I’m just someone trying to do my best with what I have.

And just because I have achieved my idea of happiness, doesn’t mean I am immune from all those nasty emotions.

As one of my therapists put it: I’m in a mourning state. I’ve lost a lot , but now that it’s over I am ready to gain whatever life experiences I thought I could never achieve because of surgery.

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There’s a lot more to I could say but trauma never goes away; it’s always there and I’m just trying to not lose myself to it again. Just like NF2, I must coexist with it.

This is uncharted territory for me. I’m just going through it, but it’s getting better!

Don’t worry, ya girl is still hanging in there!

I didn’t mean for this post to be so long and kinda sad omg

Anyway,

I’ll end it here.

It’s been a year, thank you for being on this journey and supporting me! God bless!