I'm Okay !!! ! !!!! !

Hello y'all I'm back! again! lol

It has been an insane 6-7 months since I last hopped on here, but many great and wonderful things have happened!

First, my niece Hunter was born!

She is cute and squishy,

I love her so much!

Being an aunt is probably one of the best things I have ever had the privilege of experiencing so far in life.

It's great because they are these little people that depend on you but also you can mess around with them.

I honestly can't wait to see what the future holds for them. It's been amazing seeing them grow into their own people. Each on them have their own personalities and interests, I love it!

Anyway,

and now onto the second exciting thing. . .

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I GRADUATED !!!!! Yehaw! LOL

This is big,

no huge!

When I was first diagnosed with NF2, my plans of becoming a civil engineer were put on hold almost immediately.

I didn't know if graduating would ever be a thing for me.

I was told early on that I would more than likely go deaf before I was 18 unless I do radiation or chemo.

Thinking about it as an adult now, that is a lot to put on a 16 year old.

After my brain surgery,

going back to high school. . .well, it was extremely hard.

I had brain fog and struggled with remember things. I couldn't write legibly or walk without running into lockers. The mood I received from my classmates after returning was anything but what I ever expected.

I was different.

I felt different.

I looked different.

And while people were being accepted to colleges, I was struggling and stuck in this cycle of shame.

I saw my entire class, people I have known for years, planning their futures, while mine was completely unknown.

I didn't think going to college was a real option for me, and graduating was never in my cards.

However,

I am lucky.

Extremely, stupidly lucky.

My family supported me and I ended up going to Mount Mercy which ultimately changed my life for the better.

While in college I was able to grieve and heal.

The faculty and my fellow students supported me in ways that not only allowed me to tell my story but also utilize art and writing in a way to help educate others.

Even though I lost my love math and science shortly after I returned back to high school post surgery,

I found my love for art, writing, advocacy, and honestly myself again while in college.

But even though college was good for me ,it was long.

I took my time.

I took classes that I believed would help me heal although weren't part of my major.

Once again, I would see my fellow classmates graduating early or on time.

Only instead of feeling jealousy or anger, I could only feel happy for them.

I have hit acceptance.

You see,

the stages of grief are complex and weird.

Some stages last longer than others, or they show up in your life at particular times and kinda mess shit up for a bit.

Some people are in a constant grieving state, and I like to think I am not one of those people,

but to be honest, I probably am.

However, being supportive and happy of the people I hated due to my unhealthy mindset,

was freeing.

I believe I am still recovering from my medical trauma but I am on the right path,

which is all I ever wanted and could ask for. Life is easier when you see it in a more positive light.

. . . . . . . . . . . .

Now with the good, comes the not so good.

As everyone knows, we are dealing with a crises:

a pandemic.

Last fall I wasn't on campus because the classes I needed to take were only averrable in the spring.

So I didn't have any exposure to the mask protocol on campus.

When Spring semester began, I realized after the first week, I was completely fucked.

Being hard of hearing or HoH, I have adapted to living in a hearing world;

a world that is not really designed for me.

One way I do this is by "hearing" people though lip reading, body language, and facial cues.

For example:

If I am in a group and we are talking about our favorite types on breads (lol) , and someone asks me if I like Olive Garden breadsticks or Texas Roadhouse rolls better,

I would be in a pickle.

Mostly because I wouldn't be able to understand what is being asked because of my hearing loss, so I rely on knowing the context of the situation, identifying key words being spoken, looking at eyebrows, lips and other facial expressions before I proceed with answering,

All in all, its extremely extremely extremely exhausting to have to think so logically about a question, but it's what has to be done.

It's survival.

Now, fast forward to 2021. With mouths and majority of faces being covered, I feel like I am at times walking through a crowd of faceless people.

Just passing objects, kinda like someone put a fuzzy filter over a person's face.

And I still hear noise, but its muffled and I have no idea where it is coming from.

When I was on campus, it was a struggle and completely overwhelmed me.

I spent a lot of time crying and being frustrated.

For the semester, I relied heavily on shitty transcribe apps and reading peoples eyebrows.

also add chemo treatments and constant fatigue,

Your girl was struggling,

hard.

But it all worked out, I ended up graduating and getting all As in all my classes despite not hearing really anything.

It was an amazing test for me, because now I know I am strong enough to not only withstand living in a world where I cannot hear, but also succeed.

Which brings me to my next not so great thing.

So it's been a week since I returned home from my Boston trip.

This was my first time traveling since Covid, so we have been utilizing telecommunication between my Iowa and Boston care teams.

Recently, a law was enforced that prohibits doctors from other states from having these virtual calls with their patients.

It was shocking, and it makes me extremely angry while typing this.

I think it's completely cruel that a doctor cannot legally speak with their patient virtually,

Thankfully though, my mom is pretty cool.

For the past couple months, we have been in contact with Liz Mathis to figure out what the heck is happening.

I hope, and pray this issue will find a solution.

The only way I will receive care for now is by flying to Boston regularly, which isn't a possible long-term solution.

But anyway, I kinda went off there, but surprisingly that is actually not the bad news I was getting at.

Like I said earlier, I just got back from Boston last week.

I have spent time reflecting and digesting the entire visit before I felt completely comfortable sharing the news.

After discussing with both the surgeon and Dr. Plotkin, the doctor I have been seeing since I was 17, we have ultimately decided that the best option for me is to move forward with surgery.

It's hard for me to imagine brain surgery again, but it's a reality that I will soon be living.

For the past year, the chemo that I am on, hasn't been working as it had and is causing damage to my kidneys.

My hearing has been dropping and the tumor has been growing slowly but steady.

I am trying to take the news in grace, and stay cautiously optimistic.

My surgical team in Boston is badass and I have never felt more confident or in control of a situation like this.

Like, my first brain surgery was traumatic and fast,

I wasn't given time to process my diagnosis before surgery was put on the table.

I wasn't told about what could possibly happen during surgery.

I wasn't told how my life and mental state would be affected.

But I was told I would be able to start my senior year and be back to living my life within 2 weeks post op.

When, in reality, I would take my almost 3 months after surgery to be able to write my name without it looking like a child did it.

So,

thinking about surgery now,

I am not shocked.

I have been anticipating it since I first started treatment in 2014.

I am ready to move forward with this medical journey and plan to take anything that happens after with a positive outlook.

Because no matter if good or bad is the outcome,

I know that I will always be supported by my family and friends.

I am extremely lucky to have a support system that is willing to adapt and accommodate for me.

I do not view this surgery as a loss.

Yes, my hearing will be gone, and my facial nerves, balance, and voice might be fucked for little bit or a long time after.

But, I know with my current situations, that leaving the tumor in and remaining on chemo has more risks than whatever could potentially go wrong during surgery .

So instead of being sad or upset, I am embracing my new life.

Losing my hearing and going through treatments has changed me as a person.

But my families loves reminds me that no mater what, everything will be okay,

I will survive.

I've done this before and I will do it again.

That in the end, I will be okay!

because that just what I do,

that's who I am,

and I won't lose myself to surgery again.

So don't worry,

Your girl gots this.