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! 

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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.

 

 

A Slice of my Memoir

 For those of you who don't know, I met a girl named, Katherine at the camp that I used to go to. She is my best friend. We text every day. I write about her in my memoir. Here's a little preview: 

 

The next day, we went on the Slip N’ Slide. It was placed on a grassy hill. It was a red tarp with a hose. When it was my turn, I was so excited! One counselor grabbed under my legs and one under my arm pits. Once I sat down on the tarp, I had a counselor sitting behind me and we slid down. Because the counselors were so young, they could just carry me up the hill. Katherine went next. She let out a cute sounding “wee” as she went down. It was really fun. The boys walked by us and had the “fun” idea of adding soap to the water.

            One guy counselor got an industrial sized bucket of soap and poured it down the tarp. While it was well intentioned, it made it extremely difficult because everything was slippery. Before the soap, one female counselor would spray water as we went down. It was fun because it made everything easy for counselors and campers. Easy for both parties means fun however, when it becomes hard, the fun stops. The thing is the soap got into our vaginas, so you literally had 15 girls feeling very uncomfortable.

            “Didn’t like that,” Katherine said. She would skip words like “I” or “the” because she struggled with full sentences. This didn’t reflect her cognitive ability. It just made her life easier.

            “It got up there,” I said. This was indicative of how quickly we bonded.

            “That guy was so stupid. He doesn’t have a hoo-ha,” another camper remarked.

            “Ladies, we get it. Let’s shower before lunch.” One of the head counselors said.

            I was annoyed because I would have rather been on the slide instead of showering soap off. That jerk! Once the showers were completed, we ate lunch.

            “It’s probably tater tot casserole,” Katherine said.

            “Is it good?”

            “Ehhh…”

            “So, it’s questionable.” I stated.

            Katherine nodded her head vigorously.

            I took one bite of the casserole and kindly requested cereal.

            “Lucky Charms, Cheerios, Wheaties…” Courtney was perusing the options for me.

.           “Lucky Charms.”

            No way Mom would let me have sugary cereal for lunch. This was so cool! There were so many kids who were wheelchair users and who used communication devices. Typically, I stuck out like a Starbucks coffee cup in a China cabinet in my high school cafeteria. Not this cafeteria. I fit in completely. Having Katherine by my side helped too.

That is about a page of the whole story. The stories of my memoir are all about you all. You make my life absolutely wonderful! I'm grateful for all of you. I am starting to post daily Instagram videos and I put some on YouTube so feel free to hop on there and check them out!

 

Nothing but Love,

Hannah!