Marlowe E. Horn

Caledon, Ontario

 

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Communication and ME:  Who’s Talking Now!

I began to speak at about age 2 and once I started,I rarely stopped. When I was just a kid, I did a craft show for Kids Can Do with my buddy and her mom, on a local television station.  Later, I reenacted a scene from Honey I Shrunk the Kids at Universal Studios in Florida with my brother during a family holiday.  All this made filming and acting very dear to my heart. I was in school plays where I sang using my skills and talent from private singing and piano lessons. I sang with my sister and on my own in competitions. My love for filming and acting spilled into school assignments when I’d borrow my dad’s video recorder to complete entire projects on film such as my R.L. Stine book report and my autobiography. It’s a shame no one has unearthed my talent since my accident, and asked me to star in a film with Julia Roberts as my mother.  (I have Julia’s hair length, colour, tone and body, or did, before my recent silent protest against the HST [harmonized sales tax] when I shaved my head.) Nobody ever got the idea I wanted to make a movie with Julia Roberts.  (Please help me out of my shell before I go insane.)  

When I was in grade 6, I was in a motor vehicle accident at 11 years old, rendering me quadriplegic with low vision, unable to speak or walk.  At the beginning of my recovery, after being in a coma for six months, I had nothing but body language to get my point across; first, with eye blinks then using my index finger (a straight finger for ‘yes’ and a curled finger for ‘no’), and finally head nods.  I used my left hand to salute when someone came into my room to suggest my next activity.  This was my way of telling people I understood what they were saying.  Also, facial expressions showed my moods and still do!  

About 17 months after my car accident, I got my first acceptable letter board with short words and phrases to speed up my communication.  My speech pathologist assumed I would use short words like other kids.  However, I was not like other kids and enjoyed longer words.  It was still difficult for anyone to understand me since I pointed to each letter using the knuckles on my left hand. My whole hand swept across the letter board.  I was encouraged to extend my left index finger to use as a pointer with the help of a finger splint. However, my hand bent down at the wrist so people had to really watch the end of my finger and see where it stopped on a letter. I have revamped my letter board since to include words I more commonly use to speed up my communication process even more. Tendon transfers in both wrists have straightened my wrists for improved movement and pointing.  

My accident has left me with a dual outlook on life.  I remember who I was before my accident, what I did and what I wanted to do with my life, but now my body doesn’t work the way I anticipate, to achieve these goals. With my more fun side, in the rehab centre, I shot a historic film of those surroundings before the building was demolished and rebuilt as a modern state-of-the-art rehab centre for kids.  Still nobody took the hint I wanted to be in the film business!  One steady factor in my personality throughout this whole ordeal has been my sense of humour.  Thank God for that!  I could make a sticky situation seem smooth.  With my more serious side, I have co-chaired a national conference; I have sat as a community volunteer member on an Accessibility Advisory Committee and have attended several conferences to learn about disabilities and coping skills.  

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For such community events, I communicate using my DynaVox, which is basically a computer with a voice, and memory to store files which can be opened and voiced.  (Search on the web for “ICE Conference Toronto” and you will see many alternative users with their voice output communication assists in the photo gallery). I used my letter board at school for a year and a half before getting my DynaVox at the end of my grade 9 year. The DynaVox was an improvement since I could work at home, store information, and present it later to the class in a group or individually. 

At the beginning of my return to public school, my family helped me make a math board with big numbers and symbols.  I loved math because who doesn’t understand numbers and symbols?  The markings on my math boards decreased in size as I was introduced to new symbols.  It wasn’t until my upper high school years when I progressed to more complicated math that the Special Needs Department of my local Board of Education ordered a large-sized scientific calculator that helped me immensely.  This helped my communication in math classes.

By grade 11, I produced a fashion show for my English class.   The project was a book review with characters from One Flew Over the Cuckoo’s Nest by Ken Kesey and Awakenings by Dr. Oliver Sacks, featuring institutional wear from my fictitious company M.E. Institutional Wear Inc.  I had no difficulty finding people to act because the school had a cultural arts program.  We all had fun!  Still my love for filming and acting remained unnoticed.  

After six years of very hard work, getting my Ontario Secondary School Diploma in 2004 was a huge accomplishment for me.

In my whole experience, doctors have been and still are my biggest frustration.  They are so reliant on text book learning that they can’t spend the 20 minute allotted appointment time figuring me out and why I want what I need. They look at the health history saying "spastic quadriplegic with a catastrophic ABI [acquired brain injury]"; then, they assume nothing can be done!   Writing letters and making lists for doctors’ appointments are good ways to communicate when time is limited.  It takes years to find the doctor you feel comfortable with, and it takes a lot of family and team support.  

As well, the general public can be so discriminatory because of their lack of knowledge.  I always carry my letter board so I can communicate with anyone who cares to take the time. This leads to other issues. Communicating to maintain past friendships has been difficult. Using the telephone is very challenging. It is possible to use my DynaVox with a speaker phone using pre-set messages to communicate. Spontaneous conversation on the phone takes more time and patience. However, I have found using emails, web cam and Facebook very helpful. Also, creating new friendships with able-bodied people my own age is almost impossible, but achieving a serious romantic relationship is one of my major goals.  

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Since high school I have taken some night school courses in computer science because I was not allowed to take them in school.  Computers are a huge part of my daily life now and always were.  I’m busy during the day with rehabilitation programs and medical appointments aided by an assistant.  In addition, three major operations to help my mobility have added to my hectic schedule. Consequently, I have not enrolled myself in post secondary education yet. I now have to decide about further education or just creating a job for myself.  For the past two years, I have been occupied with giving my new house a face lift and building a new wing to connect the garage with the house. When it’s complete and I move in, then I can start to think about what I want to do with my life, what my new community needs, and how I will connect. 

Reviewing my last 15 years of recovery, I would say the rehabilitation process had to start with me.   I had to show the willingness to communicate that I was still there but had many problems resulting from my injury. I had to be determined to learn in order to proceed with my recovery.   I needed a strong support team starting with my family.  They had to listen, understand and help me to start communicating with the many others in my life. Gradually, over time, I have come to manage my own communication and advocate for my own needs.  I needed my family’s support to get where I am now and will continue to need it, in some ways, to achieve my goals.  For any of us to excel, we need to communicate! :)

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