Life After Brain Surgery

A week ago my family was all meeting up at a parking garage outside of University of Maryland Medical Center Baltimore, gathering our belongings necessary for the long day ahead, and rushing inside to get to where I needed to be by my 5:30 appt time. Sadly, the hospital sent us on a long run around until we finally landed right where we needed to be, but we got there. Tension was high among the group, of course. The nervousness in the air; palpable.

I was asked if I was ready, more times than a few. How do you answer that? How are you ever ready to risk leaving your family behind? How are you ever ready to risk not coming back to them the same as you left them? So I lied. I was ready, yes. I lied and said I was fine. I lied and said I was going to be okay. I was petrified.

Questions began, IV was started, prepping was moving at the speed of light, but I was still stuck. Lingering, waiting for my entire family to hug me all at once. What would be my last thing to say to each one of them? How do you decide that? You cannot scare the kids, Kristen. You cannot upset your sisters, Kris. And my God, don’t let my parents feel my fear.

Last night I was asked what I felt in those moments. What was it that I told myself to help me get through it and make the final decision to go through with it.

The answer is my life. I wanted my life back. The vibrant, exuberant, fly by the seat of her pants girl was gone. She was replaced long ago by a zombie of a woman that was barely surviving this world. She could no longer head out on grand adventures, planned or otherwise. She spent her days hardly able to make it up and down the stairs let alone to a school event with homemade brownies.

She couldn’t make it to concerts with her sisters anymore. She had to cancel plans with friends more times than a few. She couldn’t get outside and run around with her two sons anymore. Life as she knew it ceased to exist.

But this morning. 7 days after the scariest decision of her life, that girl woke up at 5 am without an alarm clock, went downstairs without a single creaking or aching bone (stairs are a different story), and made herself a cup of coffee. Do you realize how long it has been since that has happened? I won’t count the nights where sleep never happened and I got up at 5 to start a day after a night of no rest. I’m talking actually slept for hours, woke up, went down, and made my own damn coffee??

Let’s ask my little baristas when they wake. I bet ya it’s been a while.

Good morning, world. It’s good to be back.

My New Normal

Yesterday I was diagnosed with now a 3rd pain disorder… Er disfunction/disease/ailment/illness that causes pain. I don’t even know what to call it. All I know is I’m really over it.

I’m over not being the woman I want to be. I’m over not being the mom I was; the mom my kids deserve. I’m over people questioning my constant illnesses and my constant pain. I’m over people making jokes when I slur my words or when I walk with a limp. I’m over this daily struggle.

But it’s my new normal. I have to learn to deal. 3 years ago I woke up with a migraine that never left. Thankfully, botox injections ease them enough so that I can function. Almost 2 years ago I was diagnosed with fibromyalgia. That was also a major change and adjustment. One I still struggle with daily. And now trigeminal neuralgia. I do not know much about it yet other than it’s rare, it’s painful, it can happen to anyone, and there is no cure; only the attempt at treatment.

I am not looking for sympathy or anything. I am primarily writing this just so I can get it out. So I can face the music and say to myself, “this is your new normal so learn to deal”….

I’m not sure what the future holds or if the meds will help me. I also don’t know what fresh hell awaits me for next year. Anyone wanna place bets? I’m kidding, don’t be so sensitive!

Until next time….

Pain… 

Bitter sweet memories. A mind stuck on the “use to be’s”. 

Reminiscing on those happier times. Realizing that fairy tale was nothing but lies.    

His love was but an illusion. She became tangled in the mysterious confusion. 

He left her weeping, without ceasing. Her heart broken, soul ripped open.

~Kristen 

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