Tuesday, December 31, 2019

All the Fuss is Over Tomorrow Morning

Gratitude explodes from within me. I can't believe I was a sophomore in college at the start of this decade. you have all been with me from the beginning; some of you joined along the way, and I have yet to meet some of you. I can't wait to see what this decade brings.

While everyone else is reflecting on social media, just remember you will forget it's a new decade in a few days. The kids will be screaming, work will be normal, you'll fall back into your bad habits, it's okay. Everyone will be normal in about twenty four hours. I never understood the whole hoopla regarding New Year's. It means you get the date wrong for three months, it means you forget the diet you started in about a week, a new year means nothing. Don't put pressure on yourself. It's not worth it. I start resolutions on my birthday. There is no pressure, no expectations, just people celebrating me and that gives me the energy to want to impose myself.

This post is free from any advice. However, I will say this: this blog has given me joy every month for twelve years. I've mourned the losses of dear friends, laughed with you, smiled with you, reconnected with some, and felt blessed every day of the twelve years I've been writing. I love each and every one of you. Please be safe tonight. And remember, all the fuss is over tomorrow morning.


Wednesday, November 27, 2019

The Long Journey

Oh Lord! It's calling. I can't force it to go away but oh how I wish I could! It's 4:30am and I have to go to the bathroom. I'm in my little cocoon and like an immature butterfly not wanting to spread its wings. Finally, I press the button to sit up and call my roommate in. 

When my roommate walks in, she can see the word "bathroom" spelled out on my phone. "OK" she says. Lisa, my roommate starts searching for the short orthotics. She is struggling to find them, so I point to the bathroom. She reassures me we're going to the bathroom. I know that. The short orthotics are in the bathroom. I desperately want her life to be easy; this is extremely difficult for any caregiver. I smile and spell "shower". She understands that the short orthotics are in the shower. Now that it's been five minutes, we're both functioning fairly normally and have accepted the cold, hard fact that I have to go to the bathroom. Lisa has the patience and kindness of a saint. It's now fifteen minutes later and with my shoes on, we walk to the restroom. 

On the way there, I wonder if men with physical disabilities can just pee in a jar. Can they? Shoot! I would kill for that option right now. 

Lisa sits me down on the toilet. I finally can relieve myself which takes a long time. I always thought this must be satisfying to any caregiver that the amount of effort was worth it. I remember once Genevieve, my little sister drove out to Elmhurst because my caregiver couldn't come and it took under 10 seconds to go to the bathroom and her only response was, "that was not worth it". I empathized with her. 

Lisa walks me back to the bed. I look her in the eyes and say, "thank you". "Anytime" she responds. It was one heck of a journey, but it is over. Falling asleep is the challenge now.  

It's been a difficult month for me. I had a caregiver leave because of a benign brain tumor, two caregivers thought they wanted to take the job but backed out at the last second. I did lose a dear friend and mentor to Multiple Sclerosis. She was and will be a beacon of joy for Elmhurst College. I was incredibly blessed to have her in my life. Dr. Deatra Sullivan-Morgan is why I am a motivational speaker today and every ounce of her kindness will be remembered. Heaven just gained an angel; I'm sure of it.


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,

All the Fuss is Over Tomorrow Morning

Gratitude explodes from within me. I can't believe I was a sophomore in college at the start of this decade. you have all been with me f...