Friday, December 29, 2023

2024

Readers,  

Thank you for a wonderful year. The lows were astonishingly low, and the highs were very high. I was at the lowest I’ve ever been this summer. That was a monstrosity. On the flip side, speaking to little kids and getting an article published certainly were wonderful moments. You were there through it all and I thank you from the bottom of my heart for the steadfast support. 

May we inch towards a brighter future in 2024! 

Love to All, 

Hannah!

Thursday, November 30, 2023

Karamo

I go to many Elmhurst University events. I live very close to the school so there’s no reason not to go. Back in September, I saw that Karamo Brown who is a TV talk show host, reality television personality, author, actor, and activist was coming to Elmhurst. I was going to go even if they put an ocean in between the University and me. I was going even if there was a blizzard. Thankfully, I did not have any of those obstacles that autumn evening.

Six weeks prior, I had texted my mom and asked if she wanted to go. She said no. However, my writing coach, Lex, was totally on board. He has an authentic passion for mental health which Karamo was going to speak about. When I asked, he agreed immediately. Smart man because I didn’t know it at the time, but we would have a remarkable evening together.

“Hey, Hannah!” Lex said as he walked across my condo parking lot. He was in a flannel shirt and jeans.

“Beautiful night,” I remarked after we started walking. We had been completely blessed with a gorgeous evening.

“You do know I’m just waiting for someone to ask you where your coat is,” Lex said with a smirk.

I immediately started laughing. People ask all the time why I’m not wearing a coat. I can’t easily take a coat on and off, so jackets are difficult. Actually, go to the blog post before this in which I explain further regarding the difficulty of a coat. We both laughed for a good five minutes about that.

We arrive at the University chapel. There must have been 1,500 people there. It’s large with white and brown pews accompanied by chandeliers on the ceiling. Then, it happened. Karamo arrived.

“It’s as if Michael Jordan walked in,” Lex stated.

“Seriously.”

Karama was at least seven feet tall with a shiny bald head and that man clearly works out. He may be gay, but I am a hot-blooded woman who is not blind. He took to the stage and gave a powerful talk about mental health and setting healthy boundaries. He’s phenomenal and I highly suggest his memoir: Karamo: My Story of Embracing Purpose, Healing, and Hope. The most  amazing thing happened after his presentation. Elmhurst University administrators asked if I wanted to meet Karamo backstage. Is that even a question?

I started to type in, “I really admire you,” as we were directed backstage.

I rolled up and was able to say that and explain who Lex was to me and then my mind went blank. I was completely star struck.

Lex and Karamo

“Hey, nice to meet you,” Karamo said to Lex.

Karamo had a sixth sense about who was a true fan and who was “dragged” here. Lex was really excited to come, don’t get me wrong but he certainly didn’t know as much as I did about the gorgeous man in front of me.

“Hannah, what’s your story?” Karamo turned away from Lex asking me this question.

My story is you’re gorgeous. No, don’t type that, you idiot!

Lex came to the rescue, “She did her undergraduate work here and got her master’s from Loyola. She is my client, and she is working on a memoir.”

What Lex said.

“That’s great! Would you like to send me some chapters?” Karamo asked.

“Yes!” Thank you so much. You’re amazing! I have your book,” I managed to type.

“Oh great! I’ll write my email address in the book.”

Lex had the book ready to go. God bless Lex!

He wrote a message of warmth and encouragement.

“I am so grateful!” I managed to say to Karamo.

He gave me a huge hug which I will never forget. I had to turn around, which I managed to do. Once we were out of ear shot, we both freaked out.

“Did that just happen?”

“Oh my gosh.”

We repeated those sentiments about fifty times each. We were on Cloud 9.

The two of us had dinner at a nearby restaurant rehashing every moment again and again. It was such an incredible night that we will not forget.

 

Sunday, October 29, 2023

Dystonia and Storytelling

You know the gang from Friends or How I Met Your Mother? My parents have that type of friend group. They are the most fantastic humans. Some of them literally were in the hospital room with my mother. They were watching All My Children with Mom experiencing contractions. I was coming! That day, I became part of a friend group that I would admire all my life. From begging to go on girl’s nights and Mom saying, “No, you have fun with Dad, OK?” Even at six years old, I knew those girl’s nights had to be more fun than having a bowl of Special K with Dad for dinner. Sometimes, he would take me swimming and I knew that at least rivaled the fun they were having-at least in my six-year-old mind. My point being my parent’s friends are a second family. When I got the chance to tell a story from my memoir in front of them, it was a blast!

We were at Fitzgerald’s, a bar outside of Chicago. Maureen, a redheaded woman is the founder of Voicebox. This is a storytelling event for artists. My Uncle Gary has performed at this event for years.
He encouraged me to participate and after a little encouragement, I agreed. 

This is an excerpt from my story. These are some of my inner thoughts as I roll around Loyola back in 2018:


“It’s late September so thankfully I don’t need a coat. Coats will always be hard because I cannot take them on or off by myself. In the winter, I typically get from one building to another without a coat just by going super-fast. Typically, I’m questioned about my coat at least 300 times per winter. Able-bodied people will say, “It’s cold,” or my favorite, “You should have a coat on.” Easy for you to say when you have the ability to shrug a coat on and off. I do not have that ability. You are stopping me to point out the fact that it’s cold is just creating more time outside for me. I get that you have good intentions, but you are a barrier to warmth by stopping me.”

The truth is simply funny. This story will be published in March. I’m beyond thrilled! I'll keep you updated.

My mom’s girlfriends, Jet, and Margie came out for a Dystonia fundraiser. They are so supportive. We walked around Brookfield Zoo wearing our tee shirts for Dystonia.

As most of you saw on social media, I had the privilege of speaking at the cathedral in Joliet. They brought the 5th graders from several schools. It was the first day of a three-part series. I cannot wait for the second day which is in January. The kids at my church recognized me and said hello this weekend. It was so cute!

I’m busy and loving life!

 Happy Halloween,

Hannah! 

Saturday, September 30, 2023

Happy Fall!

Pulling up to the farm, my heart was glowing. It was Joe’s birthday party and of course, Aviva, his little sister, would be celebrated too because that’s just how things work when you’re turning eight years old and have a six-year-old sister. Aviva was in a blue dress with daisies and Joe was in a blue shirt with cargo shorts. It had been a long three-hour car ride with my caregiver, Olivia. She has been with me for three years and has taken this trip with me once before. The kids ran to the car. Driving my wheelchair out of the car, Aviva ran up to me.

“Hi, Aunt Hannah,” she said shyly.

“Is the unicorn bag for me?” Aviva asked.

“The Minecraft bag is mine!” Joe said.

“Let’s let Aunt Hannah go inside first,” my cousin, Emily said. She reached out to hug me.

This day is always so special to me. Personally, it marks the beginning of Fall. It’s still hot when I roll around with the kids in the spacious yard but there’s a nip in the air when I get in the car to drive home. Emily and Jacob, her husband, maintain a farm in southern Illinois. The kids climb trees and run in the corn fields. They have a beautiful life.

Four days later, I talked to the preschoolers at my church about having a disability and the importance of kindness. They were all so cute! After my short talk to them, they mostly volunteered information about their Halloween costumes, but some had good questions such as, “Do you sleep in your chair,” or “Who helps you drive your car?” I got to connect with a little kid who used a communication device which was so amazing. He also told me what he is going to be for Halloween. It’s a month away and it’s already quite exciting. Oh, to be a kid again!

Thank goodness life is back to normal. I’m beyond grateful to focus on contributing to my community and being fully present with my family and friends again. If you know of a school that could use a presentation on bullying, please reach out.

Happy Fall,

Hannah!

"We Don't Do Slow"

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