Maureen Shields

My name is Maureen Elizabeth Shields.  My nickname has always been “Mo.” I was born at Good Samaritan Hospital in Suffern, New York in 1979.  I lived in Monroe, New York, Coral Springs, Florida, and Ridgefield, Connecticut until 2000 when my family moved to Williamsburg, Virginia.

My Father worked as a Consultant for IBM and my Mom was a nurse.  I have 2 sisters and 1 brother.  I am the baby in the family.

When I lived in Connecticut, I stayed busy in activities such as the Challenger Baseball and Basketball Divisions for adults with physical disabilities.  I participated in a ski program through the Newington Children’s Hospital. My Father would take me once a week to do exercises.  Every Friday I would get out of school early to go skiing at Mt. Southington in Connecticut.

While I was in high school, I had the opportunity to participate in a school work program.  I left school early every day and worked at Allergy Control Products collating documents and doing pretty much everything.  I worked in the storage room and impressed my supervisors as one of their best workers.  The best part was getting paid for my efforts.  I worked there for 2 school years and during one summer.  I scheduled my own transportation and I was very independent.  I graduated in 1998.

Between 1998 and 2000 I continued working part-time at Allergy Control Products.  I volunteered at a Nursing Home.  I also worked with small children at Easter Seal’s Camp in Hebron, Connecticut.

In 2000 my family moved to Williamsburg, Virginia.  A year later my sister who has the same disability that I do, moved to Merica House in Falls Church, Virginia.  This had a huge impact upon my life because I was accustomed to her constant companionship.  In Williamsburg I continued attending a day program Monday through Friday at the Methodist Church.  I attended this program for 4 years and made many close friends.

My Disability and Me

It was determined in my first year of life that I have an undiagnosed, unusual form of leukodystrophy.  At about a year old, I experienced a series of seizures.  I received treatment and continued to develop normally, although I used a walker occasionally by age 4.  I had various surgeries to maintain my abilities throughout my first 20 years.  Eventually I was using a power wheelchair.  Early in 2000 I began to fall from my wheelchair and by mid-2000 I lost my sight.

Mitochondrial Leukodystrophy is one of many neurodegenerative diseases. It is very challenging.  I try to stay as positive as possible.  Going to church, praying, and listening to religious music are big factors in dealing with my disability.

My disability affects my whole body, except for my beautiful, thick auburn hair.  I have donated my hair to an organization called Pantene Beautiful Lengths 2-3 times. Pantene’s wigs benefit women whose hair loss is attributed to cancer.  When I donate my hair, I feel great because I know I am giving something precious to someone less fortunate.  Because of my experiences donating my hair, I plan on donating my eyes upon my death.  Due to my disability, I have complete blindness in both eyes, but the doctors say my eyes are fine – it’s just the signals from my brain to my eyes that are defective.  When people see me for the first time, they don’t realize that I am blind.  When I tell them, they are completely shocked.  Sometimes they get very emotional at the thought that I can’t see.  When I tell them that I plan on donating my eyes, they find that to be very admirable.

I can’t move any of my limbs.  Others have to do it for me.  From my waist down I can’t feel anything, including someone else’s touch or even hot water.  My legs are very flexible, but my arms and hands are tight and are difficult to stretch or open up.  I have a Physical Therapist who is helping me stretch out my tight muscles.  She is working with me on my balance by helping me sit on the edge of the bed without supports.

My disability affects my lungs to the point that it affects my communication with others.  I am a good communicator.  My speech patterns are normal and I love to chat, but I don’t have the lung capacity to speak loudly enough for others to hear me.  Presently I have a Speech Therapist.  I enjoy his visits when he tries to help me speak louder.  He is very compassionate and kind.

I can eat anything I want, but I have to be careful because I may choke.  If I choke, I have to try measures to calm myself because if I panic, I may aspirate.

Technology plays a big role in my life.  In 2001 my family met a vocational therapist specializing in Assistive Technology.  He has been kind enough to traverse between Williamsburg, Falls Church and Richmond in order to ensure that my sister and I have the proper equipment to help us communicate.  I use a microphone-looking pipe called a “Sip and Puff” to make phone calls and to turn my tv, stereo, and bedroom light off and on.  Now that I have that device, my life is easier because I don’t have to depend on other people for as many things.  A battery-powered head switch in the headrest of my wheelchair allows me to tilt the chair back in order to relieve pressure and prevent pressure sores.

Merica House and Me

In 2006 I joined my sister and moved into Merica House where we share a bedroom.  These days my new nickname is “MoMo.”  I enjoy being more independent.  I go out during the week to a day program called SPARC, Special Persons Adaptive Resource Club, a club for young adults with disabilities.  With my SPARC friends I go to the shopping mall, bowling, and to the movies.  I continued going to church, but now I go with my housemates to Our Lady Queen of Peace Catholic Church in Arlington, Virginia.  Once a month Father Matthew (from St. Anthony’s Catholic Church), Fred Day, a Board Member and friend, and several parishioners come over on a Saturday and conduct a small service for us.

Volunteers come to visit us at different times.  We enjoy birthday parties for each other because we are very good friends.  We also enjoy holiday parties and other special events.  Merica House is like my home away from home.

My favorite singer is Steven Curtis Chapman and my favorite group is Jars of Clay.  I listen to a lot of Christian music.  I like to read romantic novels.  I use a digital player specifically provided by the Library of Congress for the disabled.  I like family movies and I watch a lot of news.

My Favorites:

My favorite foods are taco salads and roast chicken.  My favorite drinks are different kinds of juices and water.  I also love Smoothies.  My favorite actors are Olivia Newton John and John Travolta.  My favorite movies are Grease and the Lion King.

Two of my caregivers have helped me get through some of my trials and tribulations.  Kelley, my nurse in Falls Church, and Clarissa, my Aide in Williamsburg, have been there for me, especially for the last year.  They are special ladies whom I love very much.

Observations about Maureen:

• Roxane says that Maureen is a gentle soul with a spirituality that touches others.
• Cathy says “Maureen is always asking questions – wanting to know things.”
• Matt said “She’s nice.”
• Dee, Maureen’s sister, says “I love her.”
• Ayam, one of our newest Aides at Merica House, says “Maureen always takes her time to listen.  She doesn’t interrupt people when they are talking.”
• Eunice, another new Aide, says “Maureen is sweet and lovely.”

Things to know about Maureen:

Schedule
Maureen gets up every day around 7am.  She goes to her day program on Mondays and Wednesdays.  She leaves around 9am and returns around 2pm. On Sundays she goes to church, leaving around 10am and returning around 2pm.  She takes meds 5 times a day and occasionally has difficulty swallowing them.  On the days that she is home she likes to watch tv with other residents, listen to Christian music, read books, & nap in her chair.  She eats supper around 6pm and goes to bed at 7 or 8pm.  She takes her bedtime pills around 9pm with her tea.

Communication
Maureen’s disability primarily affects the volume of her speech.  She may have to repeat something 2-4 times before others can hear and understand her.  Sometimes this is overwhelming for her, but she pushes on and repeats herself as often as is necessary.

Maureen needs total assistance when she eats.  She can’t eat apples or popcorn because she may choke.  In the community, she will have to be fed and given her drink with a straw.  She does not mind if you touch her lips or inside her mouth when you are feeding her.

Maureen goes to a Day Program called SPARC, Special Persons Adapted Resource Club.  She goes twice a week and has many friends there.  At home Maureen enjoys reading her books, visiting with her housemates, spending time with Roxane, and listening to music.

Maureen can tell who is nearby by their steps and other attributes.  People are shocked by her ability to sense and recognize her surroundings in spite of her disability.

Maureen requires a lift to get in and out of bed or out of her wheelchair.  She uses a shower chair for bathing. She uses a manual wheelchair with a power tilt that she operates with her head.  When she goes into the community, she needs help getting things from the purse she carries on the back of her wheelchair.  She will instruct you as to where things are and what she needs.  She may give you permission to enter her PIN number or credit card number when she’s making a purchase.  She is perfectly capable of making good decisions and giving clear directions.

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