30 Cents

My communication device was tilted to the right. Something was very wrong. We were in Starbucks, of course, but my device clearly was not secure. My communication device is on a mount. The screws connecting my device and the mount broke. My caregiver and I were out running errands and with Ace Hardware within walking distance, it was the best bet.

We get there and the manager says, “well, this is unique”. That phrase defines the story of my life and I will admit “unique” certainly fit this situation. I was filled with dread and fear because if I cannot access my device, my life is on hold. The idea was so frustrating that my heart began to pound. Thankfully, the woman who managed the nuts-and-bolts section of the store was not phased as I thought she would be. She took my device downstairs and she figured out that one screw had broken in half. She had to thread it out without damaging the insides. She was needlessly apologizing for how much time it was taking. This is the most important thing in my life other than my wheelchair; take all the time you need.

Her name was Heather. Heather did it! I told her you are my guardian angel and a hero. She denied both names and simply charged me 30 cents for the two screws.

Have a good day,

Hannah!

Finally, Some Independence!

 It was a cold ten-minute walk but so worth it. I was walking to Athletico for the first time. I decided to go for my shoulder since they could massage it. I am going to other physical therapy places for strengthening and balance, but a lot of time is spent on my shoulder, so I decided it made sense to go someplace specific for my shoulder. This was after every member of my family nagged me to go. I would say I have been to physical therapy all my life; I do not need more! I'm so sick and tired of therapy. Don't get me wrong, I love my therapists! I do; they are wonderful women who had significant impacts on me. I'm just really sick of working on my balance. Anyway...

I meet Hope, my physical therapist and I had emailed her about my diagnosis and what I wanted out of my time at Athletico. We didn't need to focus on standing balance, core work, I simply needed my shoulder worked on. Hope seemed to understand my goals quite well. I told her about my other therapies and how I was trying to find a good mix of everything. She worked on my shoulder and it felt wonderful! 

I had done it. As Hope put on my coat, I realized that I had successfully done something new all on my own. I called and made the appointment, I emailed Hope about what to expect, I went, and all went well. Joy radiated throughout my body because I had been independent. It was like taking a drink of water while running in the desert. I desperately needed to be independent. I had forgotten the utter joy of going to a new place and getting to know new people. 

As we wait for any type of normal to resume, give yourself a break. Now that it isn't freezing, get out and go out for a walk. Do something that fills your soul. It's hard to be a human; try to find some joy.

 

Hannah! 

 

Just an Update

I started my new job at Anabaptist Disability Network on January 5th. It has not been as smooth as we were expecting because I have increased pain in my shoulder, and it is temporarily stopping me from what I originally was supposed to be doing. They have been great about understanding that this is out of my control. Temporarily, I’m doing various projects and focusing on social media. My dystonia is also changing too. It is not getting worse, it is changing. I notice it is more in my arms and shoulders than legs. 

I was about to try a new medication for the changes. To give you some perspective, we have not added new medication in twenty years. My neurologist who I love always told us my movements could change so this was somewhat expected. We did some research and found out the new medication could interfere with the COVID-19 vaccine. Out of all the side effects, it interferes with the most important thing in the world right now. The irony is truly beyond me. I have to laugh. 

We do not know when I will get vaccinated. All my caregivers are getting vaccinated, but they do not have the people who need care in the same group. This does not make sense. I empathize with the people who are creating the guidelines, that cannot be easy, but this simply does not make sense.  

I am sorry I do not have much to share. Life is painfully boring. I did watch the inauguration. What a beautiful thing! Garth Brooks singing Amazing Grace had me in tears. So happy! 

 I hope you are all well. I think about you every day and I send love! 

 

Hannah!