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.