Saturday, March 31, 2018

This is Not a Time to be Quiet

I was blessed to have my parents and sister come to Washington D.C. with me to advocate for Dystonia. We expressed to elected officials how crucial it is for dystonia to be funded by the National Institute of Health, the Department of Defense, and the CDC. We just heard that Dystonia did make the Department of Defense funding list. This is terrific news and it makes me excited that a cure is in reach. This is great but there is something going on in DC that terrifies me among several things, but this gets personal.

The Washington Examiner states, "The bill, the ADA Education and Reform Act, would change the 1990 Americans with Disabilities Act to give businesses accused of being inaccessible a grace period to fix structural problems with their facilities before they can be sued. Under the law, businesses must abide by specific regulations so that people with disabilities, including people who use wheelchairs or walkers or have other impairments, are able to enter buildings and use various facilities" (

This all sounds warm and fuzzy, doesn't it? It isn't. The ACLU states, "The bottom line is that people who use wheelchairs or who have other needs deserve the same right to visit local businesses as any other individual. Forcing people with disabilities to wait months to visit a supermarket or bookstore is precisely the kind of discrimination the ADA was designed to prevent. Businesses have had more than enough “notification” to comply with disability rights law. People with disabilities deserve equal access today — civil rights should not be delayed or tied up in bureaucratic red tape" (

I don't want to wait six to twelve months to enter a business place. This is putting profit over people. 

If you wish to know more, please research it. I believe the Washington Examiner and the ACLU are trustworthy sources. I purposely didn't cite articles from organizations advocating for disability rights since they all have rightfully slammed this bill. Senator Tammy Duckworth is doing everything she can to stop this bill from being voted on by the senate. 

If you want to make your voice heard, you can sign these petitions:

This post was not a break from real life and I feel bad about that because I like telling my stories to you, but this is not a time to be quiet. Pope Francis said it on Palm Sunday and I echo him. This is not a time to be quiet. 

Make Your Voices Heard, 

Wednesday, February 28, 2018

The Everyday Errands

He and I did not speak the same language, but the dry cleaner understood I was dropping off a shirt to be cleaned. "I need number", he said. I tilted my DynaVox, so he could read my phone number off my screen. We communicated even though we shouldn't have been able to. I realized recently that I can run my clothes over to the dry cleaners independently. Why not? If I can do it independently, I sure will! 

Next, I walked the twelve blocks to the AT&T store. I was going to meet Kevin, my phone guy. Kevin happens to have a little girl who happens to have a disability. I remember the first time I met Kevin. We called customer service and they asked for me to talk to them so I could confirm my identity. His response was, "no, she cannot speak". Usually, people have no idea what to say but Kevin, sounded as if he had experienced this frustration multiple times. I think on the second visit to AT&T, he told me about Maggie, his daughter. His wife and I e-mail about communication devices when she isn't being a very busy mom. As for my phone needs, Kevin will spend hours and hours with me. We're looking at all the new phones and anything new that I depend on day and night is always a challenge.

In the wake of the Florida shooting, I’ve been trying to really ask people, “how are you”? Embrace the everydayness of life. Enjoy and treasure life.

Wednesday, January 31, 2018

Awaiting Adventures

Hawaii was amazing! We went to a Luau which was my personal highlight. They literally throw fire at each other. I don't think my family will ever forget that. The real gift of Hawaii was how many laughs we had as a family. Goodness! At every dinner, we probably laughed for 30 minutes of each dinner. David created a new way to carry me (pictured below), it reminded me of how precious my family is.

Best brother in the world!

On a volcanic mountain top

Back home, I was so excited to get back to Loyola. I missed my group of friends and the professors. When my professor announced that he had proposed to his girlfriend, I asked for every detail. When my friends and I didn't know the teams playing in the Super Bowl, I thought to myself, these are my people. When my winter coat falls off and a random student stops and helps, I feel at home. When the librarian hugs me and thanks me for the Christmas card, I know Loyola is my home.

In 2018, I know a lot of adventures a wait. I cannot wait for engagement announcements, invitations to weddings, and maybe some babies. My friends and I are in exciting seasons of life. I'm still waiting to meet a guy but that doesn't have mean life is any less adventurous. I am doing online dating which is interesting to say the least. However, my main focus is school and service. I mentor kids in high school and the little girl I met at the Hillary Clinton event. It's so fun!

I wish you adventures and blessings in 2018!


Friday, December 29, 2017

Thank You, Readers!

Dear Readers,
Thank you for supporting me every step of the way this year.

To everyone who supported the idea of graduate school, thank you.

To Loyola, thank you.

To the people who help me travel, thank you.

Everyone plays a critical role. I am in awe of you, readers. The fact that people are this interested in my life humbles me to no end. My heart explodes every time I think about how many people are reading this blog.

I hope to bring you more smiles in 2018! I can't wait for the adventures!

Happy New Year,

Thursday, November 30, 2017

Thank you to my Team!

I had my physical recently and I got a clean bill of health. I consider that a huge blessing because it takes a team. 

This is what has to happen every year to get that clean bill of health. 

Approximately, I go to 106 physical therapy sessions. I walk on the treadmill for twenty minutes, I walk in my walker, and stretch. My primary physical therapist is Joanne. I love her a lot however, she receives a lot of eye rolls from me. I love Joanne but I don't and never will like physical therapy. It's worth every minute but it can get boring! If you're a kid or teenager reading this, therapy is absolutely worth every second of it, keep going because independence is so very worth it! Don't complain, just do it! 

This year, I started having my primary assistant stretch my hamstrings and quads every day that I don't have physical therapy. My therapist notices a difference which is all that matters. 

I started occupational therapy for shoulder pain from the dystonia. My therapist is awesome about realistic expectations of exercises I can do at home. Marylu understands the quicker, the better. All my therapists understand that I need to get back to my day. 

I have committed to standing in my walker a few nights a week. This helps everything in my body. I turn on Ellen and stand for about thirty minutes. It's easy and I should be serving my body since my body is so amazing and why I can live the life I want. 

A huge thank you to Mom and Dad who were so adamant about therapy. I take the responsibility of going to therapy very seriously because of them. 

Finally, Dr. Geotz is my neurologist and manages my dystonia spectacularly. He has been a resource, support, and overall encouragement for my family and I. 

Thank you to Nurse Luci and Nurse Carmen for always being there. I certainly don't need you on a regular basis but when I do, you're there!

This is why I can dance like a nut at a wedding, this is why I can walk a mile, this is why I can go to DC and advocate, and this is why I can live independently. I'm so thankful for the dedicated people who are watching my body. 

I've mentioned a sliver of my team. You ALL contribute and I wholeheartedly appreciate it. 
Let's do it all again in 2018!


Tuesday, October 31, 2017

All the Anjas of the World

Mom and I were seated in the Auditorium Theater anticipating Hillary Clinton's arrival. It was so very surreal. I couldn't believe that Secretary Clinton would be in my sight any minute. 

If I could have I would have given her a standing ovation. She graced the stage with humility, poise, and a level of grace I aspire to have one day. She conveyed that she was truly worried about the state of our country. Everyone in the crowd echoed her
Before the big moment1
sentiment. She was very humorous and kept a lighthearted tone. 

We were seated near a little girl named Anja. She has a disability and she wants to be president in 2040. Secretary Clinton took her question which was about her becoming president one day. After Secretary Clinton left, Anja and I talked as well as our moms. I hope she is reading this post because Anja's a game changer!

Women have to lift each other up right now. We have a president that thinks sexual harassment is something to be proud of. In reality, it's disgusting. He's unbelievable, a bully, and ultimately infuriating. I have women and men in my life that are actual role models and extraordinary role models at that. There people who believe in the good of humanity, people who could care less that I have a disability, people who remind me that love trumps hate. The pun is so intended.

This post is the dedicated to all the Anjas of the world. Dream big, girlfriend! 

Lift Each Other Up,

This is Not a Time to be Quiet

I was blessed to have my parents and sister come to Washington D.C. with me to advocate for Dystonia. We expressed to elected officials ho...