Saturday, April 30, 2022

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.

Thursday, March 31, 2022

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!

Sunday, February 27, 2022

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!

 

Monday, January 31, 2022

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!

Friday, December 31, 2021

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! 

Tuesday, November 30, 2021

Despite Everything, I Still Want to Speak

As many of you know, my DynaVox has been on its last leg for over a decade. I've revitalized the thing about four or five times now. I'm embarrassed that I still choose to use it. In anticipation of wanting to keep it alive, I found a guy who works on electric scooters, and he put Tesla batteries in the DynaVox. Pretty sweet, right? Not soon after, the charging port died. I was not surprised. My beloved DynaVox is with a technician who is replacing the motherboard. Yeah, I am stubborn as heck and want to revive the DynaVox yet again. I am doing this for one reason only: comfort. I love my DynaVox. It makes sense to me. Granted, this is after 16 years of it being my voice. All the speeches, readings at weddings, toasts, and countless conversations, it’s been an extension of who I am. While this may seem like a dramatic approach to take, you have to understand that this is truly the tool I use to communicate to the world that I am intelligent. Take that away and what do I have? I have you all who understand me, but I am nothing if I cannot quickly communicate my intelligence level. I am trapped inside my body without my DynaVox.

Currently, I am using the Accent 1400. I’ve had the device for eight years. I’ve gotten a new wheelchair, four new phones, but switching out communication devices has been exhausting. I’ve had to have the Accent on my wheelchair for a week and it has frozen twice, I accidentally pushed shutdown in the middle of a Starbucks order, and it stopped speaking mid-sentence today for no reason. I was utterly infuriated. I’m exhausted and frustrated. There are no words to express my frustration.

The good news is that my speech therapist is extremely devoted to making it work. I’ve stopped counting the number of e-mails I’ve sent to this woman. It’s been figuring out how I make it work for me which is excruciatingly difficult. Yes, I remain positive even though throwing it out the window seems like a better option. I have to highlight the fact that at least fifty people told me this day would come. My therapists, my friends, and even people who also have Cerebral Palsy and dystonia and have moved on from the DynaVox have looked at me like I am crazy. Yep, even people who have the same diagnosis as myself have warned me about this. I wanted life to be easy; I wanted to communicate without being physically drained. To all the young readers who use a device to communicate: DO NOT use my story as an excuse not to change. In fact, please appreciate the fact that you have a support system at school that can work with you as needed. This whole being an adult who has a disability is amazing but at times, truly a hardship.

All I ask of everyone reading this is to understand that if I have the DynaVox on, it simply means I chose comfort over challenge for that day. If I have the Accent 1400, I’m choosing to challenge myself. With that being said, if you have a DynaVox sitting around your house or office not serving any purpose, I will take it!

I’m grateful for everyone in my life. After all, you are the reason I want to talk so much. Bring on the speaking engagements too! Despite everything, I still want to speak.

Keep Speaking,

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....