Make the Effort

             Hi there! I’m well, how are you? I hope you’re well. I’ve had an eventful month. You can catch up with me on Instagram. I’ve had to fix a lot of electronics which makes for long days. I didn’t feel like writing about it because it was exhausting and desperately lacked humor. I couldn’t even find humor in the multiple situations. Anyway, with it being wedding season, I thought I would provide an excerpt from one of my chapters. It’s about a wedding years ago.

I rolled into a church in Minnesota. It was grand with marble and statues everywhere. I was at Keith’s wedding. Keith was a good friend from camp Courage. I had worn a little black dress. I got there fifteen minutes before the ceremony started. I was sitting and taking in how Allison, the bride, decorated the church when I see Keith in a grey suit and orange bow tie bounding towards me looking as happy as I have ever seen him.

 

“Hi friend!”

“Keith, why did you come out?”

“I saw you. You’re here! You drove six hours to get here. The fact that you are here is amazing!”

“I love you. I wouldn’t be anywhere else.”

“I love you too. I am marrying the woman of my dreams today.”

            He had to get back to the front of the church. I love when my friends are happy. I thought about all the things that had to happen in order for me to be in this very spot. Keith found Camp Courage online, my extended family had moved out to Minnesota, and they suggested this place, Keith was a counselor when I was a camper, Keith and I had communicated for seven years over Skype, and he took a few random trips he made to Chicago which all led to this moment. Through my faith journey, I have decided not to believe in coincidences. Everything had been orchestrated by God. I said a little prayer of thanks and the wedding began.

            Allison had on a dress with a keyhole back and capped sleeves. The lace on the dress was stunning. She would not regret this dress ever; it was timeless. When they had their first kiss as husband and wife, Keith was given a step stool because Allison was two feet taller than him. The congregation all laughed at once. They ran down the aisle as a married couple. I was at the very back of the church and Keith squeezed my shoulder. Yeah, this was a lifelong friendship.

            At the reception instead of clinking glasses, you had to go up and ring a bell to get the couple to kiss. I couldn’t get to the table fast enough. I rang the bell, they kissed, and I started to turn around. Brian, another former camp counselor turned friend yelled, “Stop”! I stopped on a dime. The tablecloth got caught in my back wheel. For a split second, Brian, Keith, and Allison all went into “camp counselor mode” and told me exactly what to do. As soon as the moment was over, they instantly went to back to being wedding guests and I hadn’t dragged everything on their table to the floor.

            The night ended with a ton of dancing which I participated into the fullest extent.

            “Hannah, I am so glad you came. It was a long drive and I appreciate you making the trip,” Keith said.

         

       Reader, this summer, make the effort! Make the effort to see people and invest in them. In August, I am going to Minnesota for my annual trip. I’m going to cherish each moment with loved ones.

A Wonderful Birthday

 Hey Everyone! Thank you for a wonderful birthday. It was filled with love and joy which I am so thankful for. My mailbox was filled with cards from you all which is my favorite part. If you sent a card, thank you. My kitchen table is covered in cards which isn't something that I take for granted.

This year, I'll complete my manuscript. I can't believe that I can actually say that. It's a crazy thing! Also, I'm looking for the right physical therapy clinic for walking. Right now, I'm trying the Zero Gravity track at MarianJoy. It's a harness attached to the ceiling. I could not fall if I tried which is nice. I've done the treadmill with it once. It's frustrating because the technology does not understand my dystonia versus me falling. It stops on its own thinking I need help from a therapist when I am fine. I'm going to give it some time. I'll post a video soon. Speaking of that, thank you for supporting me on Instagram and YouTube. 

You all mean the world to me! 

 

Hannah! 

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!

A Sip of Coffee

Hey Reader! This post is in 2nd person. .Something like this may end up in the very beginning of my memoir. Let me know what you think! 

                                                                                ***

You push the power switch located next to your joystick which is on your right. Everything is on your right because your right hand performs every task you can do independently. You type all day with it as well as drive with it. It’s your everything. You roll out from under the desk. You have leggings on, so they are creased from being up against your desk. You like the feeling of weight on your legs, it calms your movements down a little.

            Once you are in the living room, you press your remote door opener. It has the words Open Sesame on it. You roll down the hall of the condo. You wait for the elevator. How many times have you waited for an elevator? It has to be in the tens of thousands by now. In the elevator, you always struggle to press the buttons because they require just enough force to make you have to push. The elevator slides open to the lobby.

            You are headed to Starbucks. You need the caffeine for the long night ahead. You have the Easter Seals gala tonight. You’re about to put on a long evening gown that is black with sequins. You can’t wait and even though it does not start for another three hours, you’re feeling the pressure. You’re a timely person, at least you try to be. Your disability can be a hinderance to being on time. It’s annoyed you all your life. You go out the door and onto the street.

            You wait in front of the door of Starbucks to be opened by a stranger. A middle school student whose class you have spoken to about disability awareness opens the door.

            “Hannah! So good to see you.”

            “Hey. How’s it going?”

            “Good. Just got out of gymnastics and we stopped at Starbucks.”

            By “we” she meant four other girls at a table nearby the door. They are all dressed in Lulu Lemon which is absolutely ridiculous given that they are twelve years old, but you are literally going to spend $7.00 on a venti coffee, judge not, lest you be judged. Make that two $7 coffees. You’re getting one for your friend who is technically your caregiver, but Olivia is a good friend after three years of spending every other weekend together. You genuinely love that woman.

            At the counter, you recognize the barista as always.

            “Hey Sutton!”

            “Hey Hannah! How are you?”

            “Good.”

They whispered to me, “These teenagers are driving me crazy.”

“Can’t blame you,” you say.

            “What can I get you?” Sutton asks.

            You have the order pre stored in your communication device so able-bodied people don’t have to wait on you more than they already have to.

            “An iced vanilla sweet cream cold brew and an iced cold brew with almond milk.”

            “Gotcha. Coming right up.”

            You put your wheelchair in the mode for it to change positions. You raise your seat so Sutton can scan the Starbucks mobile app. They successfully do. You set your chair back to its  normal height. Even though the baristas are very patient, you feel like people get

impatient anytime you do this because it’s not quite clear what you’re doing when you adjust positions in your wheelchair, and, with it being very quiet, you know it’s hard for others to understand why you’re just sitting there for 10 seconds. You’re not. You’re adjusting the chair. It’s not like you can type on your communication device while you adjust.

            You go to the other end of the counter and wait for the drinks. Another barista sees you and says, “Do you need them in your cup holders?”

            You make eye contact and nod your head. He puts your drinks in the two cup holders attached to the two handlebars on your wheelchair. Your wheelchair is literally an extension of your body.

            “Need the door?” Another barista asks.

            I nodded then said, “Have an amazing rest of the day. Thank you!”

            Rolling home, you smelled coffee. Too much coffee. And then your ponytail swings around and the very end is damp. Not hours before the most elegant night of the year. This is so annoying and

frustrating. The Starbucks staff puts stickers on the opening of the lid, but liquid is liquid, and its god is gravity. You are so frustrated! How bad is it? You won’t know until Olivia can see the damage. Shoot!

            Opening my condo building door feeling crabby about my ponytail, I quickly get in the lobby. Nobody’s in the lobby, thank goodness. You roll in the elevator, press two, roll out of the elevator. You hit the Open Sesame door opener.

            “Hey Girly!” Olivia exclaims.

            You have a steadfast rule with yourself to always ask “How are you?” first before asking caregivers to do something for you.

            “How are you?”

            “So ready for tonight! How about you?”

            “Great. I know the coffee got in my hair.”

            “I’ll take a look.” She went around the back of my wheelchair. “It’s fine, just needs a wet washcloth.”           

            After a minute, the coffee is out of your hair. Olivia swears it looks fine. Then, you finally get a sip of coffee.

"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.