My Communities

On Saturday afternoon I was at Mass in a town not too far from where I live. I follow a certain priest around the suburbs of Chicago. His name is Father Tony, and his messages lift my heart up. While listening to his homily, he mentioned that a deacon that served at the church I also frequent had passed away. He had passed away that morning. I wasn’t close to Deacon Tom, but I am close with his wife, Mimi. My heart broke for the new widow. What an incredible shock for the parish of Mary Queen of Heaven!

Three days later, my mom texted me saying the founder of the Dystonia Medical Research Foundation  passed away. Joel Farber was full of energy and love. Beth was his daughter, and she is on a mission to cure dystonia. I genuinely admire her. The family that founded the Foundation back in the 1970s has helped countless people. I’m glad they did the grunt work so I could get the support I needed decades later.

I’m a part of many beloved communities. There is a season for everything, a time to laugh, a time to weep, I am incredibly grateful for community even if we are weeping together. These communities mean everything to me; they are my people.I will show up for them no matter what because at the end of the day, relationships matter.

My heart goes out to Texas. Call your congress person about common sense gun laws now.

Love,

Hannah!

 

A Tall Order

I had a unique order at my local Starbucks. I have a steel bar on my wheelchair that holds my communication device; it is called the mount. The mechanism that attaches the mount to my wheelchair is assembled with screws on the outside and inside. Tightening the screws on the outside is easy however, tightening the screws on the inside of the mechanism is very difficult. You have to take the whole thing a part.

My caregiver whose 5’2 tried tightening the screws and two days later, it was loose again. She has muscles but this is a really tough job. I had the idea of going to Starbucks and asking one of the baristas to help.

These two pieces have to screw together. Nothing easy about it!

 

This particular barista has some large biceps that I needed in order to achieve having a stable mount. The barista agreed to help. First, my caregiver showed him how to loosen the outside then I have to watch it slowly fall apart. You have to understand that I need the angle just right as well as how far away it is from my body. Once everything is totally in pieces, my caregiver shows him the two screws that need to be tightened. He is on the floor at Starbucks with my caregiver, we have wrenches, plyers, and a slew of mechanical objects on the ground. He tightened the inside screws. Success! Then, my caregiver and the helpful barista were extraordinarily patient with me as they make sure everything is right.

I insisted on at least treating him and my caregiver to a venti coffee. It’s the least I could do after a tall order.I hope you all have a community to count on; I don't know what I would do without my people!

Love,

Hannah!

P.S. A few weeks later, it was loose again. I went to my dad. It’s not moving anytime soon.

A Good Morning

It’s six blocks away from home but it’s much like home itself. It’s my local Starbucks. My caregiver opens the door for me, and I am welcomed by the scent of coffee. Every barista says, “Hi Hannah.” Their hellos are like music to my ears. I’m entrenched in this wonderful community, and I will never get enough. I order a skinny caramel macchiato. It’s on the table ready for me. A mix of brown and white mixing together creates a liquid mosaic, and I cannot wait for my caregiver to grab a white straw that bends so my lips can gently latch on, and the liquid mosaic can quench my thirst when I hear, “are you Hannah”? He has a mop of gray hair and a beard to match. There are only two options. Option number one is it’s an ignorant person who wants to ask about my disability. Thankfully, it’s the latter.

“Hannah, I was your geometry teacher.” He says it with a molecule of hesitancy and an unmistakable sound of excitement in his voice. My brain and heart registers who he is. I shake my head and extend my arms as if I want to hug him. “You want to hug” he asks. “Yes,” I squeal. We embrace.

I cannot stop grinning. “What are you up to” he asks. “I am a motivational speaker.” “How wonderful” he replies. Mr. Kerr tells me he’s retiring this year. I cannot help but think to myself, “one less great teacher out there.” My heart sinks a tiny bit but there is nothing that can truly dull my excitement. We take a selfie and I tell him, “Your homework is to read my latest blog post.” He nods acknowledging the irony.

This was a good morning. I wonder what God has in store for me for the rest of the day.

That is a sweet story for you, readers! This was a really wonderful surprise. Other than this, I have started writing classes with the dream of becoming a published author. We will see what the future holds!

Make it a great month,

Hannah!

Love is a Verb

My world is better this month. Covid has stopped running my life so much so that I actually went on a date. I am meeting guys online, and this man and I had been messaging for a few weeks and he asked me out. He and I happened to not have chemistry. It was an extremely mutual decision to be just friends. However, I did buy myself a fabulous dress before the date which ended up being the best part. One step closer to finding the guy who is going to be perfectly imperfect with me. I have an unapologetic hope that he is out there. If you want to help me, keep an eye out for really good guys. I am open, I want to have a blast, and I am ready to get out and live again! 

I am brokenhearted about what is going on in the world. In my view, war does not solve anything. However, the United States having boots on the ground does keep us safe, so I thank our service members. We owe you everything. For people who have disabilities in Ukraine, my heart goes out to them. If you cannot hear sirens, if you cannot see which way people are running, if you cannot get out of a building because of the rubble...I do not know what you do. The thought takes my breath away. 

I was discussing this with a good friend of mine. He is much wiser than me and he basically said all we can do is what our Creator would do which is love. We have to act out love each and every day no matter how small. I am frustrated that I cannot stop this war myself, but we all know life does not work this way. Little acts of love go a long way. 

I hope you can take the words of my friend and find comfort and hopefully turn words into action. After all, love is a verb.

Keep the Faith,

Hannah!

 

Counting my Blessings and Letting the Mystery Be

This month has been a horrible flashback to 2020. I'm sure many of you feel similarly.  

Here's how my month went. First, my main caregiver tested positive for Covid while my dad was getting over it and my mom was just starting to get Covid. Oh! My sister tested negative on Christmas Day but not Christmas Eve. So, I spent Christmas Day with my roommate. Claudia is a complete joy and a sweet soul. Nonetheless, I was heartbroken about being away from my family on Christmas. 

I would say one caregiver tested positive every other day to the point where I took a Covid test every other morning as part of my routine. I did ask my caregivers to double mask or wear a KN95 mask

around me and I wore one mask around them. I double masked or a KN95 mask for physical therapy and running errands. It's a constant stress. I was living in a dark circus that I wanted out of. 

Most of my caregivers tested positive in January through no fault of their own. I grinded through the insurmountable stress. I also needed to constantly be looking for people to cover shifts. That is a tremendous stress too.

Natalie, one of my dear friends who I love very much; I texted her on a Friday night and basically said I need you to come over because I need to talk to someone other than my caregivers. I appreciate my caregivers, but I need to see my friends for two main reasons. One, I need to pop my bubble and realize everyone has something going on. And two, I NEED A BREAK. When my friends are over, it’s like a little bit of my disability falls away and I get back to a place of joy and I can reset. I will note for safety reasons that Natalie had Covid a month before and I hadn’t been exposed in over 7 days, so we got together in a safe capacity. I was able to take off the “employer” hat and just be me. At the end of our visit, Natalie said something interesting. She thanked me for letting her in when I wasn’t all positive and happy. That’s a good friend right there.

The fact that I did not get Covid last month is a mystery. I don’t know how I did not manage to get it. I’m going to let the mystery be and count my many blessings all of which are you.

 

Love,

Hannah!

Let's be People of Hope

Two years ago, I wrote about the hype of New Year's Eve. While I still agree with it being a little overrated, it's a chance for us to pause and hope. We have been through a lot this year. We haven't made it through this pandemic, but we made significant progress. Progress is noteworthy. I'm tired of masks and talking about vaccines. This is not how I saw this year going. 

The good news is we can be people of hope. There's a reason why people keep having babies, there is a reason individuals go back to school to better themselves, there is a reason people get married and that is hope. When we look ahead, it's our instinct to hope. While hope may be coupled with fear, we can choose hope. That is what I wish for you this New Year: for you to hope. 

Happy 2022,

Hannah!