Let's be People of Hope

Two years ago, I wrote about the hype of New Year's Eve. While I still agree with it being a little overrated, it's a chance for us to pause and hope. We have been through a lot this year. We haven't made it through this pandemic, but we made significant progress. Progress is noteworthy. I'm tired of masks and talking about vaccines. This is not how I saw this year going. 

The good news is we can be people of hope. There's a reason why people keep having babies, there is a reason individuals go back to school to better themselves, there is a reason people get married and that is hope. When we look ahead, it's our instinct to hope. While hope may be coupled with fear, we can choose hope. That is what I wish for you this New Year: for you to hope. 

Happy 2022,

Hannah! 

Despite Everything, I Still Want to Speak

As many of you know, my DynaVox has been on its last leg for over a decade. I've revitalized the thing about four or five times now. I'm embarrassed that I still choose to use it. In anticipation of wanting to keep it alive, I found a guy who works on electric scooters, and he put Tesla batteries in the DynaVox. Pretty sweet, right? Not soon after, the charging port died. I was not surprised. My beloved DynaVox is with a technician who is replacing the motherboard. Yeah, I am stubborn as heck and want to revive the DynaVox yet again. I am doing this for one reason only: comfort. I love my DynaVox. It makes sense to me. Granted, this is after 16 years of it being my voice. All the speeches, readings at weddings, toasts, and countless conversations, it’s been an extension of who I am. While this may seem like a dramatic approach to take, you have to understand that this is truly the tool I use to communicate to the world that I am intelligent. Take that away and what do I have? I have you all who understand me, but I am nothing if I cannot quickly communicate my intelligence level. I am trapped inside my body without my DynaVox.

Currently, I am using the Accent 1400. I’ve had the device for eight years. I’ve gotten a new wheelchair, four new phones, but switching out communication devices has been exhausting. I’ve had to have the Accent on my wheelchair for a week and it has frozen twice, I accidentally pushed shutdown in the middle of a Starbucks order, and it stopped speaking mid-sentence today for no reason. I was utterly infuriated. I’m exhausted and frustrated. There are no words to express my frustration.

The good news is that my speech therapist is extremely devoted to making it work. I’ve stopped counting the number of e-mails I’ve sent to this woman. It’s been figuring out how I make it work for me which is excruciatingly difficult. Yes, I remain positive even though throwing it out the window seems like a better option. I have to highlight the fact that at least fifty people told me this day would come. My therapists, my friends, and even people who also have Cerebral Palsy and dystonia and have moved on from the DynaVox have looked at me like I am crazy. Yep, even people who have the same diagnosis as myself have warned me about this. I wanted life to be easy; I wanted to communicate without being physically drained. To all the young readers who use a device to communicate: DO NOT use my story as an excuse not to change. In fact, please appreciate the fact that you have a support system at school that can work with you as needed. This whole being an adult who has a disability is amazing but at times, truly a hardship.

All I ask of everyone reading this is to understand that if I have the DynaVox on, it simply means I chose comfort over challenge for that day. If I have the Accent 1400, I’m choosing to challenge myself. With that being said, if you have a DynaVox sitting around your house or office not serving any purpose, I will take it!

I’m grateful for everyone in my life. After all, you are the reason I want to talk so much. Bring on the speaking engagements too! Despite everything, I still want to speak.

Keep Speaking,

Hannah!

CP & Dystonia Webinar

The Dystonia Medical Research Foundation held a webinar about Cerebral Palsy (CP) and dystonia. I was honored to be a guest speaker. Here is what I said:

Hi! I am Hannah Thompson. I was diagnosed with dystonia at 7 years old due to a brain injury that occurred at birth. The initial brain injury caused cerebral palsy. 7 years later, we saw the onset of dystonia. I have generalized dystonia; this disorder impacts my whole body. Despite these roadblocks, I have chosen to thrive. I have gotten my undergraduate degree in communication at Elmhurst University and my master’s in social justice at Loyola University Chicago. I have amazing friends, a blossoming motivational speaking career, and a full, rich life.

The role of cerebral palsy and dystonia have played small parts in my life. My diagnosis shapes how much assistance I need throughout the day. However, my diagnosis is not the reason I am a positive person, an organizational freak, a coffee lover, a good friend, and all my identities that really matter. Due to the dystonia as well as the Cerebral Palsy, I do go to physical therapy twice a week to undo what the dystonia does on a daily basis. I have a lot of tone throughout my body and my back likes to extend, all of that movement causes pain. Physical therapy consists of pain management, strengthening and balance work. My core strength can get me back to center when my body has large movements. The dystonia is going to do what it is going to do but with therapy, I can find my center and get back to my life. Besides for therapy, when someone new comes into my life, the movements during that first conversation can lead to discomfort for the new person but everyone in my life gets used to the dystonia and focuses on who I am as a person which is so much more important than any diagnosis.

One of the questions that the DMRF asked me to address is what would you say to your teenage self? I would say that life gets so much better after high school. Middle school and high school can be the worst years of your life. Everyone cares about their appearance in high school, they probably don’t want to associate themselves with someone who is considered different. In college, everyone is looking to connect. I know in college, nobody cared that I was disabled. I have a ton of friends; we still get together. My life is really full and beautiful.

To sum up, I would say my dystonia is secondary. I am so much more than any medical diagnosis I will ever have. My advice for anyone is to be positive and live every day. Get outside, get to know your community, walk, or roll around the world with a happy heart. Thank you for letting me tell a little bit of my story today. I’m honored to be a part of this webinar and thank you to the Dystonia Medical Research Foundation for what they do every day.

Thank you all for being a part of my life so amazing!

Have a great Halloween, 

Hannah! 

Aunt Hannah

I have many roles to fulfill in this life. I'm a daughter, sister, cousin, etc. However, when all three of my godchildren Will, Joseph, and Aviva call me Aunt Hannah, there is nothing in this world that brings me more joy. Recently, I went to Joseph and Aviva's birthday party. We were all vaccinated, and it felt so good to see everyone. It had been over two years, so I was in heaven. 

The party was great. I was able to visit with my aunt who I rarely see which is always a blessing. Emily, my cousin, and I got some time to talk. Jacob, her husband, and I got the rare opportunity to sit down and have a meaningful conversation which was so sacred. I love when a good heart to heart conversation comes out of nowhere. Those conversations are a treasure! 

Touring the Farm

I had planned to stay after the party so Joseph and Aviva could really get to know me. They were getting comfortable around me and then Covid hit. Joseph is five years old, so he remembered me and is also an energetic extrovert. On the other hand, Aviva is three and did not remember me. She needed some time to warm up to me but after a few hours, she definitely came around. 

I got to play with them and complimented Joseph when he shared with Aviva. He would always respond to any compliment with, “thanks, Aunt Hannah”. We rode around their farm, and they wanted to show me their bouncy house. Joseph was so excited to show me everything he possibly could in one evening. There was nowhere I would have rather been than with those two kids. The evening ended with, “I love you, Aunt Hannah”. Who could beat that? Nobody.

Love,

Hannah!