Love the People. Hate the Problems

            Black. Every time my finger made contact with the screen, it turned black, and it would flicker like static on a TV made in the 90’s. My voice was malfunctioning. It’s a frightening sight to see the thing you depend on and what is an extension of yourself so broken. I had a presentation in 2 hours just to maximize the stress.

            On Saturday afternoons, I choose to not have a caregiver so I can have time to myself. 99.9% of the time this is wonderful. It gives me a little break from having someone around. This was the 0.1% that it’s less than wonderful. I had reached out to Jenny, my rep from the company via text explaining how much of a problem this was. She took two hours to respond because it was a Saturday. My rep was at the Botanic Gardens with her family. She made the generous decision to ask them to go home so she could help me. I was speaking at a place which was 45 minutes from my house, and I don’t know how far she had to drive from her house.

            Meanwhile, I texted my longtime friend and co-presenter, Kevin. This had never happened. Kevin said he would improvise until I arrived. When I did arrive, it was an interesting scene and that is putting it mildly. You know, better yet, I’ll start with the car ride there. Remember Olivia from the airport debacle? She was there for this show too.

            “How are we going to mount it on, Olivia?” I said referring to the fact that I need my device mounted on my chair.

            “I’m not above duct tape.” Olivia said.

            “Oh my God. How am I going to speak to these kids?” I asked.

            “Honestly, I don’t know but we will figure it out.”

            I nodded my head.

            In the parking lot, I saw Jenny. She had on a khaki skirt and a blouse.

            “That device is flickering. That’s crazy, Hannah!”

            Without using my communication device, I said, “Yeah, I know. Thank you…”

            “Of course! You have to be able to do your job not to mention communicate. I understand.”

            World’s best speech therapist.

            “Did you bring the mount?” Olivia asked.

            “I thought about that. My device has a mounting plate but transferring that thing is going to be difficult.”

            On the back of my device, there is a horseshoe shaped mount. That piece attaches to a little black square. It’s supposed to hold my device on no matter what. Needless to say, taking it off is like detaching a brick from a brick wall. It’s possible but not easy. Kevin came out and offered to help.

            “I think you need to hit the mount against the stone bench, or it’ll never come off.” Jenny said. We had made the bench our impromptu workstation.

            “Are you sure it won’t break anything?” Kevin asked.

            I nodded at Kevin as Jenny confirmed that it was the best option. It literally goes against every ounce of common sense. Typically, I don’t ask people to slam my equipment into stone but there’s a time and place for everything. Kevin hit it once and then again. It fell off. Eureka!

            “Screwdriver. We need a screwdriver.” Olivia announced like she was a surgeon asking for a scalpel.           

            “I brought one,” Jenny said.

            I felt helpless in that moment. Everyone had the physical ability to help besides me. It doesn’t feel great being the one that always needs help. I knew this trio did not mind and knew my worth. However, as I get older, these “adventures” become increasingly irritating instead of entertaining. Life’s hard enough. My communication device should just work!

            “Perfect.”

            Jenny and Olivia screwed everything in. Jenny even thought to download my voice. My “voice” is from AT&T and is not offered on my device unless it’s downloaded. This is annoying because users get attached to their voices.

            “OK. You’re set. I would stay and watch but I have babies at home.” Jenny said.

            “I’m so grateful that you came. It means the world.”

            “Of course.”

            The presentation did go well. I’m so grateful for Jenny. It’s just getting tiring to be dependent on technology because everything breaks, and my life is on hold until an able-bodied person can help. I love the people, but I hate the problems.

            “Olivia, you will be a speech therapist like Jenny. I know it!”

            “Thanks, I hope so.”

            “I know so.”

            The speech went well. I was at a retreat for middle school students so they weren’t too excited, but I can’t blame them. I never want to go through that again. I’m still waiting on my communication device to get repaired. I’m ready to have it back.

Happy June,

Hannah!

January...

Instagram. For those of you who are not on that platform, I’ve been doing daily videos since December 2^nd. They range from educating people about my disability to simply hoping people have a good day. It’s hard work thinking of ideas every day so if you have an idea, let me know. I’ve uploaded a small amount of content to YouTube also.

I did speak to a class at Elmhurst University. It was on disability awareness. I changed it up and told them a story about a difficult week in my life. It was about caregivers calling off and what that means for me. I liked being vulnerable and sharing the not so sparkly side of life. The class had a positive reaction to my story. You can see little snippets from the Q&A on Instagram.

I was supposed to have multiple speeches this month. The majority were canceled due to weird reasons such as illness, cars not starting, and snow days for schools. I hope Mother Nature calms down in February. I have always hated January and this January was no exception. I’m ready to welcome the month of love (and pink) in.

💓,

Hannah!

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 5^th 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!