Love the People. Hate the Problems

            Black. Every time my finger made contact with the screen, it turned black, and it would flicker like static on a TV made in the 90’s. My voice was malfunctioning. It’s a frightening sight to see the thing you depend on and what is an extension of yourself so broken. I had a presentation in 2 hours just to maximize the stress.

            On Saturday afternoons, I choose to not have a caregiver so I can have time to myself. 99.9% of the time this is wonderful. It gives me a little break from having someone around. This was the 0.1% that it’s less than wonderful. I had reached out to Jenny, my rep from the company via text explaining how much of a problem this was. She took two hours to respond because it was a Saturday. My rep was at the Botanic Gardens with her family. She made the generous decision to ask them to go home so she could help me. I was speaking at a place which was 45 minutes from my house, and I don’t know how far she had to drive from her house.

            Meanwhile, I texted my longtime friend and co-presenter, Kevin. This had never happened. Kevin said he would improvise until I arrived. When I did arrive, it was an interesting scene and that is putting it mildly. You know, better yet, I’ll start with the car ride there. Remember Olivia from the airport debacle? She was there for this show too.

            “How are we going to mount it on, Olivia?” I said referring to the fact that I need my device mounted on my chair.

            “I’m not above duct tape.” Olivia said.

            “Oh my God. How am I going to speak to these kids?” I asked.

            “Honestly, I don’t know but we will figure it out.”

            I nodded my head.

            In the parking lot, I saw Jenny. She had on a khaki skirt and a blouse.

            “That device is flickering. That’s crazy, Hannah!”

            Without using my communication device, I said, “Yeah, I know. Thank you…”

            “Of course! You have to be able to do your job not to mention communicate. I understand.”

            World’s best speech therapist.

            “Did you bring the mount?” Olivia asked.

            “I thought about that. My device has a mounting plate but transferring that thing is going to be difficult.”

            On the back of my device, there is a horseshoe shaped mount. That piece attaches to a little black square. It’s supposed to hold my device on no matter what. Needless to say, taking it off is like detaching a brick from a brick wall. It’s possible but not easy. Kevin came out and offered to help.

            “I think you need to hit the mount against the stone bench, or it’ll never come off.” Jenny said. We had made the bench our impromptu workstation.

            “Are you sure it won’t break anything?” Kevin asked.

            I nodded at Kevin as Jenny confirmed that it was the best option. It literally goes against every ounce of common sense. Typically, I don’t ask people to slam my equipment into stone but there’s a time and place for everything. Kevin hit it once and then again. It fell off. Eureka!

            “Screwdriver. We need a screwdriver.” Olivia announced like she was a surgeon asking for a scalpel.           

            “I brought one,” Jenny said.

            I felt helpless in that moment. Everyone had the physical ability to help besides me. It doesn’t feel great being the one that always needs help. I knew this trio did not mind and knew my worth. However, as I get older, these “adventures” become increasingly irritating instead of entertaining. Life’s hard enough. My communication device should just work!

            “Perfect.”

            Jenny and Olivia screwed everything in. Jenny even thought to download my voice. My “voice” is from AT&T and is not offered on my device unless it’s downloaded. This is annoying because users get attached to their voices.

            “OK. You’re set. I would stay and watch but I have babies at home.” Jenny said.

            “I’m so grateful that you came. It means the world.”

            “Of course.”

            The presentation did go well. I’m so grateful for Jenny. It’s just getting tiring to be dependent on technology because everything breaks, and my life is on hold until an able-bodied person can help. I love the people, but I hate the problems.

            “Olivia, you will be a speech therapist like Jenny. I know it!”

            “Thanks, I hope so.”

            “I know so.”

            The speech went well. I was at a retreat for middle school students so they weren’t too excited, but I can’t blame them. I never want to go through that again. I’m still waiting on my communication device to get repaired. I’m ready to have it back.

Happy June,

Hannah!

"We Don't Do Slow"

 

Sitting in Washington D.C. traffic is like nothing else. Olivia’s ponytail hung on the back seat in front of me. Olivia, my bright-eyed, energetic caregiver was exhausted as we all were.

            “Should we look for other flights?” My mom asked.

            “No, we’re going to make the flight, Jean. That is going to happen,” Olivia stated.

            “We’re going to make it,” I said feeling weary.

We had just been at Capitol Hill in Washington D.C. and had literally walked (and wheeled) three miles that day. Going from congressional office to congressional office, telling my story, asking for funding was simultaneously exhilarating and exhausting. You can check out my video about it here.

            “Mom, it’s okay,” I said. Getting an accessible taxi took 90 minutes. This was why we were so late to the airport.

            “It’s about 10 more minutes away,” the taxicab driver well aware of our nerves explained.

            When we arrived, I got out of that taxi like it was on fire. When it was time to stand in line for security, Mom told Olivia to go to the gate the second she could. What happened next was horrific. Olivia flew through security running to the gate while Mom and I entered the checkpoint. I stuck my arms out to start the process of getting patted down.

            “We’re in a huge rush. We would appreciate it if you could keep that in mind,” Mom said. My poor mother was asking for some empathy on our part and the TSA agent replied, “We don’t do fast.”

Oh shoot. I definitely said a different word but you get the picture. 

She then proceeded to tell me that we had to go about twenty paces to where she would pat me down. This agent had control over us, and she was pure evil.

            “Can you give consent for the pat down?” the TSA agent asked me.

            I nodded and said, “Yes,” with my communication device.

            “I don’t understand you,” the agent said.

            You did, you just want to make sure my life is brutally difficult. This was a power play and we both knew it. Mom finally came over and the agent started the process. I’m used to this, so I anticipated where she was going. The pat down was over quickly. She proceeded to check my chair for weapons by wiping a cloth on the arm rests; this was standard procedure. What was not standard procedure was the fact that she insisted on opening my carry-on, taking out my wheelchair charger and scanning it again. I’ve flown at least 50 times and TSA has never had to take out my wheelchair charger. She was the epitome of someone who abused her power and loved making people miserable. Once that hellish part was over, Mom said, “Go to the gate!”

            Ladies and gentleman, you have all seen me drive fast. In the summer, I may go my fastest when Elmhurst University is empty. I crank the music up, turn the speed to max volume and think, Just never go this fast around other people. If you had told me last summer that I would  go this fast around other people, I would have thought you’d mistaken me for another brunette that uses a wheelchair. Nope…I was the crazy woman who was driving a wheelchair at a dangerous speed in Reagan National airport. I know dangerous and this was dangerous. I broke every rule that I have for myself. Gate C33…Don’t hurt anyone… Gate C33…Don’t hurt anyone…I made it to the gate. I saw Olivia.

            “Breathe, they understand. We’re fine.” Olivia said.

            Olivia transferred me to an aisle chair which is a narrow wheelchair made to go down the aisle of a plane. She buckled me in and proceeded to start unscrewing the back of my chair. Mom quickly joined her. Once they got the back down, Olivia put a cup over the joystick and spun the duct tape around my joystick at least 10 times. That joystick was secure. It would have been comical if not for the circumstances. The wheelchair was as short as physically possible. Once we were on the plane, we laughed about everything but security. Little did we know the second act was coming.

            The plane landed at O’Hare and we waited for the majority of the passengers to get off. There was a slew of kids leaving the plane too. They were very slow so the flight attendant told them to wait so I could walk off the plane. We entered the jet bridge.

            “That wheelchair does not have a seat belt. She needs a seat belt!” Olivia said.

            “We cannot let you use an aisle chair.” The airport employee said.

            At that moment, my wheelchair that had the seat back folded over and resembled a mountain of duct tape came into view. They suggested we use it. Olivia muttered under her breath, “Use common sense.” Mom had called Dad and asked him to come to O’Hare and assist with assembling the wheelchair which was why we didn't want to do it at the gate.

            “She can’t sit in that yet!” Olivia said exasperated.

            You fools!

            The pilot stopped the madness by saying, “Let her use the aisle chair. They can come to me tomorrow morning with questions.” The pilot was probably 50 years old and had a warmth about him.

Thank God!

            Olivia sat me in the aisle chair as my mom brought the wheelchair accessories such as my knee blocks and my communication device. Nope, I couldn’t say a word to these idiots, and I can’t decide if that’s good or bad. I don’t have any kind words towards these people besides the pilot.

            It’s a Hannah parade! The airport employee is pushing my precious wheelchair looking like a mound of duct tape, Olivia is pushing me in the aisle chair and Mom is carrying eight bags behind us. Olivia whispered down to me, “If someone gives us you-know-what about this not being a “wheelchair,” I’m going to lose my…”

            “That is not a wheelchair!” One employee yelled across the airport.

            Olivia is going to lose her…

            “It’s fine! I’m with them.” The airport employee said.

            As we entered the baggage claim, my thought was one, Able-bodied people are quite slow when walking and I can’t wait to go to bed!

            When we saw my dad at baggage claim, he greeted us by saying, “Olivia, this is our lives. Isn’t it neat?”

            That’s about right.

 

 

Moving On in Gratitude

Lots of updates! Lots of updates! 

First, I did find a new caregiver! Hallelujah! Praise the Lord! My mom literally stopped her life to find candidates that I could interview. I chose a woman who has a ton of experience. We are two weeks in and she’s comfortable with my care. I’m so relieved! It was an exhausting few weeks and I would not wish that stress on my worst enemy.

I’m emotional as I write this because I received cards, flowers, texts, emails, and a few of you even stopped by to visit. Having a support system like I do is the best gift I could have. To have everyone step up and realize that I was struggling and actually act on it is priceless. To know that you all care that much touches my heart so deeply. There are no words for how grateful I am.

In other news (so glad to be moving on), I did get published. I am published in Busted Halo, an online Catholic publication. You can click here to read the article. https://bustedhalo.com/life-culture/counting-on-christ. I worked on being published with my writing coach, Lex. He has been holding me accountable for writing my memoir.

Lex has been coaching me since February 2022. We meet via Zoom weekly and we do meet in person for different readings and plays in the city. He pushes me to be a better writer and he’ll humor me and read the occasional fun, girly novel during class especially when my life is difficult. Typically, he and I read serious memoirs, but Lex knows when I need class to be a break from life. It’s always appreciated! Here’s his website if you are interested: https://www.lexsonnewriting.com/. I cannot recommend him enough. Even if you don’t want to write a memoir, he tailors each class to his students.

I’m breathing a sigh of relief and focusing on writing. I’m so grateful for each and every one of you.

Gratefully,

Hannah!

The Saga Continues

She left the keys on the table and never came back.

If you read the last post, you'll know the massive struggles I've had finding a caregiver. The saga continues because we found a woman who I liked. She had great experience, seemed competent, and was a positive person. For reasons I genuinely do not know, she left after only two days. I wanted to implode with anger. I don't have the answers. I'm back to doing interviews. If this were to happen at any other time, I would have to move back home to Glenview until we found someone. Thankfully, a graduate student at the University can come next week so I have to find someone. Please let me know if you know someone. I'm past the point of desperation. 

On the other hand, I got to go to the Mall of America in Minnesota. Friends come and see me that I met during my years going to Camp Courage. That was a wonderful break from the insanity that is my life. 

 I love you, readers! You keep me going! 

 

Love,

Hannah! 

Ready for May Flowers

Before I graduated college, I had the opportunity to speak to medical students at Northwestern University. That was really my first professional speech, and I loved every minute of it. Ever since then, they invited me back every year with the exception of Covid (it really did stop everything) so my relationship with them has grown and grown. I have the privilege of speaking to future doctors about patients with special needs. It’s always a sign of spring because it’s always in March or April.

Other than that, it’s been a stressful month. I have caregivers coming and going. Some caregivers are graduating and moving on and finding caregivers to fill their shifts is like a Rubik’s Cube but harder. It’s all consuming and I know their first few days are always rough. It doesn’t matter how good they are or how patient I am with them, it’s hard.

All around, I’m good. I don’t have any more speeches so please spread the word that I am available. I’m ready for a May flowers, how about you? 

Love,  

Hannah!