Living My Dream

This month, I was honored to speak at a fundraiser for Dystonia. Here’s my speech from a few nights ago.

How do I say this? I was not a huge fan of advocating for dystonia until this year. See, I thought a cure was out of reach and I was really fearful to have hope. I did not want to put myself at risk for heart break. Dystonia had always been a dark spot in my life, it was the first reason why I took a medication for something related to my disability, it was the cause of many difficult mornings because I couldn’t put my shoes on, and then I would consequently spill during breakfast, or after a shower my left foot would be so turned in that I could not walk the ten steps to my bed and my parents would have to carry me. When I put everything I associated with dystonia up until October of last year, dystonia was the worst part of my life.

Then, through a connection of my mother’s friend, Barb. Thank you for what you have done, Barb. I got to tell my story to Congressman Bob Dold. My mother knows me well enough to know I could not say no to me telling my story to an important person. Well Mom, if that was your plan, it worked. The day we met with the Congressman a light bulb went off. Oprah would call it an “ah ha” moment. I figured out if people in power knew my story, it would have an impact on the speed for a cure for dystonia. That day I also met the fairy godmother of the Dystonia Medical Research Foundation, Janet. She seemed to really get me. I also knew that people cared. I wanted to help the Foundation. I e mailed Janet about an internship a few times. OK, I emailed a lot. I finally understood this community, we were not dreaming and wishing, the cure is around the corner, we have a very hard turn to make, we have to pull the steering wheel until it has no choice but to go in our direction.

I’m still scared to hope. It takes courage. Courage I did not have until I realized how incredible this community is. I’m so thankful for the support you all have shown me. I am going to end with a quote from the hit TV show, Glee. “It takes a lot of courage to see the world not as it is, but as it should be.” That is what we are doing tonight. We are changing the world for people who have dystonia and I think that is courageous. Thank you, and let’s have a wonderful night.

Readers, I hope you enjoyed my speech.

In other news, I went to southern Illinois to speak at a conference. I speak at Elmhurst College tomorrow which is always a great time.  So, I’ve been busy living my dream! I wouldn’t change a thing.

Love,

Hannah!

An Independent Evening

It seems as if the only positive attribute associated with fall is pumpkin spice lattes or PSLs. While I choose to indulge in salted caramel mochas or SCMs, I also look forward to Elmhurst College's homecoming events. They start mid September and I enjoy them immensely. In my other apartment, I could not just walk to an event; someone had to drive me which led me to not to participate as much. It's a whole lot different this year. 

The first event was an opportunity to meet the new president of Elmhurst College. It was at a local sports bar literally across the street from my condo. I would have been the lamest person if I didn't go. Sporting a blue and white blouse and white jeans, I started the one minute walk over to the bar leaving my assistant behind. Leaving my assistant behind felt good. 

 
When I got there, there was a stair. This was so annoying but everybody did their best. The restaurant staff had a makeshift ramp as in a flat piece of wood. It worked and I was on the patio with a slew of fellow alumni. Nobody from my graduating class was there so I didn't suspect I would be there for long. I sat next to a guy who did something with machinery. He really lacked conversation skills. I understand talking to someone who uses a communication device is intimidating but just not that difficult. And honestly, I was way out of his league. I hope the ladder was most intimidating for him.

 
I spent about an hour there. I did get to meet the president of the College but I did meet his wife who I found to be lovely. I had a great time but an hour was plenty of time. After I managed my way down the makeshift ramp, I decided I didn't want to go home. I found myself going to Starbucks for the pink drink. The pink drink is a mix of Starbucks' Strawberry Acai Refresher and coconut milk, topped off with a scoop of strawberries. Needless to say, the baristas totally understand when I type out "the pink drink" instead of the description above. I get my pink drink and am still not ready to go home. 

 
The Jewel is all too close and I remember how much I love Reeses! I swear, my wheelchair has a mind of its own It just took me to Jewel where Reeses was buy 2 get 2 free. I'm sucked in and I stand in line. I try to contain my laughter as the woman in front of me is just buying veggies and here I am with four Reeses. I was hoping the woman in back of me would have several wine bottles but no such luck. The cashier has already been through checking me out prior to this so she knew the protocol. 

 
Leaving Jewel, I knew I had to go home because it was getting dark. Walking home, I was filled with glee. I had gone to an event and two stores with complete independence. What could be better than an independent everything?  

Love,

Hannah!

Painting the Town Pink!

Last August, I lost my best friend, Julie to Cystic Fibrosis. I wrote a poem about feeling her presence.

You left town a year ago

Don’t worry, I’m painting it pink!

Your light shines in me when I go to work and try to make the world a better place

I feel your light and know to shine it for you

You left town a year ago

Don’t worry, I’m painting it pink

Your light shines every time I’m behind a microphone

Your light shines in me and I try to embrace the audience like you embraced everyone you met

I feel your light and try to treat others as you did

You left town a year ago

Don’t worry, I’m painting it pink

Your light shines when I am with family

I feel your light when I spend time with my brother and sister  

You left town a year ago

We’re still painting the town pink

Your light is blinding when I really look around

I feel your light; it’s everywhere!

It makes us all smile.

I miss my best friend more than any dictionary could have the words to describe. However, I don't remember her in a sad way; it's more fond memories. 

Anyway...

I've been going to Starbucks independently. I've gone to this particular Starbucks for about three years so the baristas know me. When I first made the venture independently, I will admit to being nervous. I had white pants on and it was just before a formal event. I had just gotten a cup holder that fit perfectly on my wheelchair which is hard to find and I wanted to try it out! I took the way to Starbucks that avoids the railroad tracks and people are nice and will definitely open doors. After realizing I had come independently, the baristas didn't think anything of it. It took teamwork on their part but we did it! I did not spill on my white pants. 

After the initial trip, I made some adjustments. I use the Starbucks app to pay. The barista can scan the bar code on my phone instead of going through my purse. I have my order ready to go in my DynaVox; I do everything in my power to make it easy on them. I think that if people with disabilities want to be independent, we have to be responsible and help the community understand our needs. They should feel like they know we were helped in the way that we wanted. I know I've walked away from situations where I didn't fully walk people through what I expected and they just look so confused and concerned as if they were thinking, did I do OK? 

I did cash my paycheck independently too. I want to stress that I know the staff at the bank very well. They know me by name and I know them just as well. I have a pink stamp and they knew where I kept it. They did everything right by showing me every single thing that they did with my checks that I wanted to cash. I did have the checks in one envelope so I could give the teller everything at once which is making her life easy. There was an element of teamwork because the bank was empty and the other tellers could help make it go smoothly. This girl is cashing her paychecks independently. Woo hoo!

I am so darn happy! This really is my town and I am painting it pink!

 P.S. I apologize for the link to my fundraising page not working last month. Here it is again: 

https://grouprev.com/Donate2OTR-hannah-thompson

My Independence

I am a working woman! Can we get a round of applause for that? I've been waiting a LONG time to be able to say that. As for the actual work, I'm happy. It's writing letters and researching which doctors and scientists are keeping up with their medical research. Some of these doctors clearly did not stay in neurology. I researched a doctor who had gotten a grant approved a number of years ago  for funding which is why we have to check on all these doctors to make sure they are still in neurology. This one particular doctor definitely had a career change that led him to breast augmentation. I'm just doing the research but I know that guy isn't getting funding! Honestly though, it is interesting to see the doctors and scientists who have worked 25 years and have made groundbreaking discoveries. 

More and more of my friends are getting married! It's so exciting! I went to Megan and Tony's wedding yesterday. Megan was my assistant for three years in college and her wedding was extremely small. It was 50 people so I felt honored to be invited. After the ceremony, she yells, "Hannah gets the first picture". That made me feel special. My friends (especially former assistants) know that going to a wedding or any big event is a lot for me. It’s validating when someone can appreciate my efforts. 

I would not trade the life I have for the world! I have an unwavering need to be independent. I moved to Elmhurst in June and I could tell you how to get anywhere on a sidewalk avoiding the train tracks. It's funny how we'll be driving in the car and I'll be figuring out how to independently get to our destination. For example, to get to my weekly Monday afternoon appointment, here's what I do: 

I ride to the park, have to go all the way through the park, take the three blocks to the library, physically go through the lobby of the library, and then the library shares a parking lot with the building I go in. I am amazed my brain is on alert for me to be as independent as I can. I'm always figuring out how to be more independent and the way I have to get places would frustrate the majority of people but I find it hysterical and incredibly rewarding. 

In the wake of a very broken world, I do get down and scared about our future. I don't like where we're going but the United States is the free world and I get the privilege of being independent. My independence may look different from the majority of people but I appreciate it so much more. I don't have the words for this country right now. I've read so many articles and I am glad nobody feels like they have the answer. That sense of entitlement right now would not do any good. I think it's possible that the helpless feeling we all have at the moment might help humble us in the future. Maybe not knowing the answer right now is actually a good thing.  Socrates once said, “The only true wisdom is in knowing you know nothing”.  I don’t know the answers but I have hope for this great country.

Love,
Hannah! 

P.S. If you are wanting to do some good for people with disabilities who want to live independently, please read about a side project I’m involved in here.