Thursday, October 31, 2019

Let's Cure Dystonia!

I had the privilege of speaking at a dystonia fundraiser this month. It's always a real privilege! Here's what I said: 

Thank you for that introduction, Beth. As of May 2020, of this year, I will have obtained my master’s degree in social justice. I speak at this benefit this year telling you my accomplishments each year. This is a great privilege and I am humbled to share my story year after year. However, I wish I did not have to share my story each year. I live a wonderful life and a life I would not change for the world, but I need a cure for dystonia. I would like to not need benefits and fundraisers for dystonia. A world without dystonia would be better.

In church today, the priest was commenting on how we don’t know what everyone had going on this morning. The message was on judging others and how it hurts people. And I thought to myself nobody knows how hard it is to struggle to get dressed every single morning because of uncontrollable movements. It’s hard and honestly, I would love for it to just go away. But that cannot happen without fundraisers like these. I would not dwell on how frustrating dystonia is; there is absolutely no reason to.

However, as a woman who entered the dating world this year, it is so hard. You cannot imagine how hard it is to date. First, you have to actually like someone. Most men are quite boring, or they just don’t have their lives together and are still living with their mothers. Come on! Then, if they passed that test I have to explain to them that I cannot feed myself. That’s a nerve-wracking conversation. I have been complaining about how hard this is but maybe I’m lucky. Because the man I marry will be amazing like Sheri’s husband was. Dating and disability are not associated in our culture. Well, I am going to be brave, be bold, and get my happily ever after.

Regardless of what happens with men, I will graduate with my master’s degree this year. Thank you to my parents, friends, and family who supported me. Beth, you are truly amazing, I hope I did Sheri proud tonight. Thank you. 

Readers, thank you for your support! 

Let's Cure Dystonia, 

Monday, September 30, 2019

Broken Glass

I was meeting with my mentor, Kevin from college at a local coffee shop. Starbucks was closed for renovation. The shop has a makeshift ramp. It wasn't enough to get me up the barrier, so Kevin and a kind stranger pushed me up. I was going as fast as I could to gain momentum. I made it up the step, but I couldn't stop the wheelchair. I remember pulling back on my joystick and knowing I could not stop it. the wheelchair hit the glass door and shattered it. I was showered in glass. I hear people talking about possibility calling the paramedics. I was bloody everywhere and very much in shock. I don't think I could process what happened for a few minutes because this was such a freak accident.

This is Kevin's observation of the aftermath:

Hannah was upset and embarrassed.  Tears were almost there, I think.  And for maybe three minutes as we figured out what to do next, and worked to clear away the glass, I kept trying to calm her- “Not your fault, it is okay.”  I don’t remember what I said at the three-minute mark, but I think it was something like, “Hannah, this is the most interesting thing that has happened to me in months.”  And she started to giggle.

We cleaned away more glass.  And we laughed a little more.  I think I called her “Crash,” or accused her of vandalism.  Laughter.  We noticed a few cuts on her arm and fingers.  The coffee shop staff brought out a first aid kit.  The guy who helped lift her chair with me stayed with us and helped with brushing glass away.  We laughed.  I had business cards in my pocket so I gave them to those who helped out and asked them, “Please send me a text or email- I’m sure Hannah will want to say thank you.  I’ll pass your contact info along to her.”

Thank God Kevin has dad instincts to make a joke because I would have bawled. I did contact everyone who was so kind and thank them. I didn't mention the ADA law only to their manager because I think crashing into the door was much louder than any verbal comment.

Kevin was extremely kind and vacuumed every inch of my wheelchair. I barely had any scrapes despite the initial outpouring of blood. That is miraculous! It's not something I want to repeat EVER.

Life is going to hand you crap. Deal with it by choosing to be kind.

Kevin did say, "that was the most interesting thing to happen to me in months". Glad I could entertain you, Kev.

Watch for Broken Glass,

Saturday, August 31, 2019

Jam Packed and Joyful

I went to Mall of America for a 24-hour trip. The trip was supposed to be much longer, but life happens. I'm so grateful to the caregiver who made it work.

I started my morning with breakfast with my family. Katherine, my best friend joined us. I got time with my godson, Will. It was nice to catch up with everyone. The most interesting thing that we realized that morning was that my cousin who is a guy was never asked to feed me. That is something we have to acknowledge with my godson, Will and my nephew, Joseph. It's interesting how my cousin's gender effected our relationship. Joe, my cousin would carry me 100 miles if I needed him to and will help the little boys understand they need to feed me too.

I met up with my friends who just adopted a little boy. He is literally so beautiful. The dad was my camp counselor; I went to Brian and Natalie's wedding. Brian beat cancer and it's been great to witness not just how strong Brian is but him and Natalie overcoming obstacles together. 

My Irish friend, Keith took me on roller coasters. I remember thinking, THIS IS INDEPENDENCE. My caregiver was doing her thing and I was with friends who would get me on and off roller coasters. It is not easy to do and it's so awkward in a physical sense because of my height. I love my friends for it. I love that they work around my disability as much as I do. 

From there, I rolled around the Mall. It's so accessible and the stores keep all their doors open so I can zoom in and out. 

I had dinner with a good friend from working at Pathways Pediatric Therapy center during college summers. She is a speech therapist and I would go in and motivate her clients to use their communication devices. We happened to keep in touch and Kelly appreciates leaving her four kids with dad to have a peaceful dinner with me 

That was a jam packed and joyful Saturday! I would do it again anytime! 

Enjoy the weather, 

Let's Cure Dystonia!

I had the privilege of speaking at a dystonia fundraiser this month. It's always a real privilege! Here's what I said:  Thank ...