Recently, I got asked to do a presentation about my disability and how I live my life. It was for a class that Dr. Fiene who I mentioned earlier in my posts asked me to do. This presentation was really enjoyable. I have decided to put the speech and questions that were asked in this post:
My alarm clock is a garage door opener. With the push of a button, my assistant walks in and my day begins. My assistant turns on my DynaVox, which is my voice and then my computer which I rely on for countless tasks. Then, she starts getting me dressed because I am unable to get dressed and undressed independently. She puts me in my wheelchair, combs my hair and takes me to the washroom. This is all while I am thinking about my day, appointment at 3:00, that assignment for class is due on the 20th and so on. I check my e-mails while I eat breakfast, maybe some assignments from professors, Facebook messages, and of course and usually an e-mail from my mom about something or another. I take a shower with complete help from my assistant. Yes, I threw modesty out the window a long time ago! After my shower, I have a two minute makeup routine and I am out the door. My assistant stays in my dorm and does tasks such as, laundry, running to Walgreens, and scanning my books and worksheets into my computer.
I come back from class. It’s one of the best parts of the day! I get my coffee! An iced white chocolate usually is what I get and the coffee people can guess what I want most days. Now, it’s down to the cafeteria for lunch. My assistant feeds me and it feels extremely normal for that is all I know. I don’t know anything different, to me, it’s an everyday occurrence. Usually, I check my mail after lunch. When we get back, I do my exercises. My assistant leaves for the day. I am independent for the next two to five hours. During this time, I usually, check my e-mail again, do homework, go to the writing tutor, and basically do stuff that I can do without a personal assistant. This is a nice time for me because I get privacy and get the privilege of independence. I go to another class at 4, and that ends at 5:30. A different assistant meets me at my dorm, she takes me to the bathroom and we head to the cafeteria for dinner. I usually order from the pasta bar and yet again, the staff can predict my order. I love how they know me. After dinner, my assistant leaves me. This is usually when I do the bulk of my homework and Skype with my friends from Minnesota. After this period of time, my assistant will come and put me to bed which involves, brushing my teeth, face wash, make up remover and taking me to the bathroom. Then, I walk to my bed and go to sleep just to push the garage opener the following morning.
Before I open this up for discussion, I would like to mention a few things. On Monday and Fridays, I have physical therapy in the afternoon. On Monday, the therapist comes to me and we work in the gym. I do the treadmill and stretch. On Friday, I have to take the Pace bus to a therapy clinic and it’s frustrating because they are always late. This is incredibly annoying! You should know that my day is full of hellos from sorority sisters and good friends on campus which make my day. I have SGA on Thursdays. I don’t really think about the disability that much because I live as normal as I can. You guys had questions and I tried to answer them while describing my day but some questions I could not incorporate into this part of the lecture presentation.
First question: Have you ever felt that your disability has restricted you, or do you not see your situation as a disability?
?
Of course a physical disability or any disability restricts you. I can’t drive a car, grab a drink if I’m thirsty and so on but I don’t let it restrict me from things such as joining a sorority. So, it’s really how you choose to see it. If you say to yourself, I can’t even give myself a drink, then your life is going to suck but if you focus on the things you can do, your life will be better.
2nd question: What are some obstacles that you have had to overcome because of your physical disability?
Going to school, personal care, I face obstacles on a daily basis. Just getting to know somebody can be difficult because they don’t understand how I work but it’s amazing because I see myself grow and I have the privilege of watching people grow, it’s pretty cool and it outweighs the frustration completely.
3rd question: Were you always able to talk through your computer? If not how has it changed/helped you?
I got the DynaVox in elementary school and I hated it because I didn’t think it was my voice. I used an ABC board because I had simple thoughts and my mom and dad could understand me. Not until I wanted to flirt with Joey on the bus then I realized the power it gave me. Oh, the power of hormones!
4th question: What kind of opportunities has Elmhurst College given you?
The first thing that comes to mind is a social life! In high school, I didn’t have friends because nobody wanted to take the time to get to know me. Everyone ignored me and now, my peers help me daily and I feel like I can be a valuable friend and vice versa. So, it has been a 360 from my life in high school. It’s shocking how my expectations have changed of my peers. It used to be, please help me, now, the help is so automatic. It’s been absolutely incredible.
5th question and this one was my favorite: Is there anyone who has inspired you or helped you become the person you are?
Oh my God. So many people have helped shaped who I am. A lot of high school teachers, a lot of amazing assistants but I have to say my parents. They always made sure I was happy and that I had every opportunity I could and with that belief, other people came into my life and were able to say, yes you can. And I entrenched myself in those beliefs.
Final question: What is one thing you would like everyone to know about you?
I think it is that I know my purpose in life is to teach and inspire the world. Anything is possible and never say no.
The students were extremely receptive and I could tell I had made an impact which always feels good. These presentations never get old, I swear!
I have not been having the most glorious two weeks. Registering for classes was particularly stressful and my professor passed away.
You have to understand that usually I get early registration for classes. However, during the January term which is basically summer school in the dead of winter, juniors and seniors get priority. My first choice was a special class for communication majors and I really wanted it. There were 22 spots, throughout the week I watched it go down to 0. Shoot. I still have my general education literature requirement to fulfill. So my backup was Civil War literature. It would have been a bit dull for me though but I could have withstood the dullness. Guess what? Didn't get in. So, I look at the classes and all that is left is a class that I can't even understand the title to and the professor provided no description. I don't have any other options except to register blindly into this course. I tell the registration office to sign me up for the course. I go over to the registration office and the woman who helps me actually had the syllabus for me. I look through it and it's actually a virtual travel course in Germany. This class actually looks pretty cool. I will follow up on this in my January post. Although this ended well, it did put a huge amount of stress on me which was not good!
When I walked into acting class on the first day, I saw this young and spry woman full of pizzazz. It was clear that she fully understood me. I was grateful for this because I am not the typical Acting student. The weeks went by; we got a temporary sub due to her being sick. This just meant she just had to recover to me. I thought nothing of it. She would come back for a day or two during those two weeks and she had an oxygen tank with her. Still, I thought she would recover. Then, a week ago my permanent substitute professor had an announcement. Suddenly, I knew exactly what he was going to say. He went to his office and had an e-mail from Kristin Spangler's husband. She was on life support and her attorney was coming that day. I started crying and I was far from alone. The entire class was crying and if you weren't crying, you had this numb look about you. She passed away that day. It is a very sad time for my peers especially the theater majors. All I can say is and this is partially to my readers who are disabled: We lost a good one. And to my great peers of Elmhurst College: I love you and I am here for you!
Although I don't want to especially in the light of Professor Spangler's passing, I have been stressing a lot lately over the little stuff and I think it is human nature to do that because we want everything to go smoothly. I'm not going to say anything about destressing because I don't have that answer. However, try to concentrate on the big things like friendship. That reminds me, I did have a wonderful visitor earlier this month.
The visitor was Katherine from Camp Courage! Ah! We were so excited to see each other! I walk out of class and I see her running towards me. It was pure joy! She was going to be on campus for the day then we would go back to Glenview for shopping and manicures. We were the dynamic duo like always! I would like to point out that all the staff members made time to meet Katherine. Elmhurst College never ceases to impress me! It was a glorious time with a woman who I consider a sister. At one point in the weekend or maybe it was in December, I said, boy I would love to thank the person who assigned us as cabin mates because that person deserves to know about what we have and be thanked profusely! Speaking of thanking people profusely, I have to thank my mom for virtually giving up her weekend so Katherine and I could do everything we wanted to. Thank you, Mom!
Before I leave your inbox, one last story (I can't send a post without some humor):
I wake up at 7:45 and I am at the edge of my bed. This cannot be good. I am also at the bottom.
Hmmm......this isn't good. Now, I am thinking how am I going to push the garage door opener all the way at the top of the bed? If I roll over, I fall off the bed. But how the heck to let my assistant in? I really don't know. I figure when she knocks on the door, I will call for her as normally as I possibly can. My assistant knocks on the door. Normal voice. Normal voice. Normal voice, Hannah! If I didn't use my normal voice, my assistant would worry. I didn't want or need that. I call out in my normal voice. She knows something is up! She is smart enough to figure out that for some reason, I can't open the door. She calls Campus Security to open my door. I'm thinking PLEASE DON'T CALL 911, I don't need paramedics today. The security guard comes and unlocks my door and refuses to even look at me until my assistant said everything is going to be fine. You know...I have to say cute paramedics wouldn't have bothered me that morning!
I apologize that I couldn't write about a funny or sweet adventure. Really, I am! But, this is everyday life fortunately and unfortunately. I realized this month that everyday joys can be just as good. Everyday life is frustrating, monotonous and boring but it can be wonderful, happy and funny. So with that being said, I encourage you to see the joys of everyday life.
All My Love,
Hannah!
2 comments:
Hi Hannah!
You probably wouldn't remember me but we met once last year when I first started being an R.A. and all the freshman were going through orientation. I never truly got to know you but I see you around campus all the time. I just wanted to say that I started reading your blog today and it is absolutely amazing. You are such an inspiring woman and have truly contributed a great deal to this campus. I volunteer at Easter Seals Tuesday - Thursday and someone always mentions you when they see I am from Elmhurst College. I just want you to know that your story is amazing and sharing your joys and struggles is an inspiration to anyone who listens. I apologize if this seems awfully random, but I felt that I had to share my thoughts with you. Have a fantastic Thanksgiving break! :)
Hannah, my view on this is when someone passes on, you begin to realize that everyday life is precious.
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