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.

Running on Coffee, Jesus, and Positive Vibes!

We were featured in our local papelr!

June was awesome! Not just because it was my birthday, it was also my family's fundraiser for Dystonia. It was at Flight Wine Bar and we had 120 people come. Every single person who came has a place in my heart. My family had never done a fundraiser before and we were deeply touched by the generosity and love shown by every guest. I was given the best birthday gift that night. Here's my speech from that night. 

First and foremost, I want to thank every single person who is here. You are critical to the fight to cure Dystonia. Don’t feel like what you can give tonight is insignificant. My neurologist literally said, if a family comes in here and gives me money, I’ll go to the lab that very same day. A cure for Dystonia is not an abstract concept for scientists.  I want to stress that this is not impossible, we are close! You all have seen Dystonia in me. It’s the brick wall between me and taking independent steps. If I could take just a few steps on my own, it would literally change my life forever. It is nothing but a burden to me. If you have not noticed, Dystonia makes me really angry. And if you know my mother and my little sister, when Thompson women are angry, we do not sit back and take it. We fight. Dystonia needs to be a page in medical history books, not the current books. And speaking of history, I want to thank Mr. Steve Herzon for hosting his first Fight Club. I am absolutely humbled by tonight. And I know long time family friend, Mrs. Elisa Boughner a spectacular artist is auctioning off a beautiful painting for this cause. Thank you to the Dystonia Medical Research Foundation for being tireless warriors in this fight. Thank you to Congressman Bob Dold; he has been a champion for Dystonia.  Finally, to my family for making tonight happen. Mom has fought every fight for me, you all know it. We have both taken on this fight and we will win. Let’s have a great time tonight and from the bottom of my heart, thank you so much for coming.

  

I was crying, Mom was crying, I don't think that there was a dry eye in the place and I can say that because I was no exception. 

I did have quite the adventure just before the fundraiser. So, I'm coming back from Washington D.C. and Stacia, my assistant and I know the weather is going to get terrible. We got to the airport and asked for an earlier flight. They were already overbooked. A few hours later, we board the plane and we're delayed by a few minutes which is something I didn't think much of. 20 minutes later, we hear that we are delayed a half hour. At this point, I'm annoyed. I think I texted my parents and said, we're extremely delayed and at least an hour from taking off. My parents said update us when you know something. Basically, every 20 minutes we would hear we were still delayed. Eventually, we realize there is no way we are taking off tonight. Mom is freaking out about us getting a hotel room. Stacia and I are fairly calm about the situation. Stacia is a very cool, calm, collected person but I did want to have a hotel room booked so I am anxious. Ironically, we got the same hotel room as the previous night. We did have to wake up at 4am after going to sleep around 1am in order to catch our flight. We were both exhausted and I had the fundraiser the next day. I was running on coffee, Jesus, and positive vibes!

Happy to be Well Rested, 

Hannah! 

Pieces Falling Together

I must start this post with gratitude. The Easter Seals race was a complete success! I walked a mile and a quarter in 56 minutes! I am extremely proud of myself. We raised over $1,000 together; that is all because of you so thank you. I genuinely appreciate it from the bottom of my heart!

The move to Elmhurst was successful but not without bumps. The movers were three hours late and with the condo association's rules; they had to come back the next day. It was incredibly stressful! My parents took the first day off work to help me move so they asked Margaret, my roommate and I to supervise the move on the second day. It was going fine until they showed us the bill. The bill included two days of moving instead of one day of moving. Margaret and I called Mom and she was going to call the manager and work it out. The movers left the apartment but stayed in the parking lot. Margaret left to go run errands and I am eating lunch with my assistant, Stacia. 

The police show up at my door and say you didn't pay your moving bill. The entire week had been extremely stressful so I just start crying. We call my mom and she starts crying. My mom told us to just pay them so they would go away. Stacia and I are escorted by the police downstairs. I'm still crying so Stacia is the one to go outside and pay them with my card. Mind you, I am told I physically have to be in the lobby during the exchange.

That was my move. It was with Two Men and a Truck which I do not recommend at all. That good news is that it's over! The first week here was difficult because they still didn't have the shower ready or my bathroom faucet. However, both are now in and I am so grateful! Mom and Dad remodeled the bathroom and it is the world's most accessible bathroom. I am in the downtown area so I have so much more independence! 

The Dystonia Medical Research Foundation has offered me an internship. My duties will involve advocacy, research, and social media. I will start July 11^th. I'm so excited to be a part of the cure!

On a sad note, Julie's brother who also has Cystic Fibrosis is in critical condition after having a seizure. I'm really scared. He is incubated at the moment. I just hope he can pull through. I ask for your prayers and positive vibes.

 I started this post with gratitude so I'll end with gratitude.  Margaret, my roommate has been a gift from God. She and I couldn't get along better and I think the world of her! We really do have something special and I would not change it for the world.

I am so grateful that things are finally falling together! This year has been really long and starting a new chapter is exactly what I've wanted for so long!

With Gratitude,
Hannah! 

Heartbreak and Hope

LET'S. CURE. DYSTONIA.

I went to Capitol Hill to fight for a cure for my movement disorder, Dystonia. My family and I went to Dystonia Awareness Days with the Dystonia Medical Research Foundation and we went to 8 senator offices. We only met one senator; we told our stories to staffers but people who had done this before assured us it was normal. I felt empowered and absolutely on fire to fight for a cure.

I met Chelsie who had  Dystonia in her neck. She did not get diagnosed for 12 years. I can't imagine that absolute frustration! I got diagnosed right away because I live near Chicago and my neurologist, Dr. Geotz prescribed a medication that has worked for 17 years. The fact that people have to wait years upon years for a diagnosis angers me! After that, they have to figure out treatments which can also take years. Chelsie is still waiting for the right treatment.

My Sister and Me

Jasmine, Chelsie, and I

Melissa has two precious little girls who have this ugly condition. As a mom, she is fighting for her girls! Melissa takes her beautiful girls to acupuncture just hoping it helps. There is no guarantee. I'm not a mother but I couldn't imagine the pain that comes with seeing your kid suffer. Ugh. HOWEVER, Melissa is a beauty queen and works her magic with her crown and sash with the senators. She works that angle well! YOU GO GIRL!!!

There was such a sense of hope and community during those two days. Everyone was so determined to tell their stories and tell their congressman why Dystonia should be on the National Health Institute list of rare diseases. If Dysttonia gets on the list, we get funding for the Fiscal Year 2017. Chelsie and her loyal friend, Jasmine did so well telling their stories and Genevieve, my little sister was great. I'm so glad Genevieve has a heart for public service. Of course, my parents were awesome too!

Before the trip, we had scheduled a consultation for Botox injections in my throat. This trip got my hopes up in a big way because everyone had some kind of success with it. Two weeks after, Mom and I go for the appointment thinking about all the possibilities. I definitely want to talk! This could be amazing!

It was not amazing. If I had a specific group of tight muscles, Botox would work but I don't. The Dystonia is all over my body and I can't talk because the message between my brain and mouth get so interrupted that I'm not a candidate for Botox. After the doctor left, I started sobbing and Mom was crying. My heart felt like it resembled a windshield after a terrible car accident. My heart was broken. I wanted it so badly. I'm crying as I write this. I was ready to have an easier time talking. It is not coming anytime soon.

This is why Dystonia needs to be cured! It needs to be cured for Chelsie who wants to put her paycheck towards furthering her education not medical bills. It needs to be cured for two little girls who should be outside playing not poked with needles.

To end on a good note, my body feels ready for the Easter Seals race on Sunday. I'm ready to tackle that extra quarter! Just a last call to donate: http://www.firstgiving.com/fundraiser/HannahThompsonES/RunFortheKids2016

After the conference, I cannot help to have a fierce amount of hope for a cure. Our passion for a cure is like wildfire. We are fearless!

I'll keep fighting Dystonia. Your job is to keep reading!

Hannah!