Living with Multiple Sclerosis: Wheelchair bound but not helpless
Editor’s note: This article is the second of a two-part series focusing on multiple sclerosis and its effects on those suffering from this debilitating disease. Colleen Howard passed away May 8, 2017, after fighting a courageous and painful battle with MS.
This article was written before that time and is posted here as a tribute in conjunction with the annual Walk MS: Idaho Falls, 2017 to be held at Snake River Landing on Saturday, Sept. 16, 2017. Registration begins at 9 am. You can find more information here.
IDAHO FALLS — Multiple Sclerosis is a debilitating disease that affects thousands of Americans each year. Colleen Howard was diagnosed with the disease in 1994 and today, only remembers what life was like outside of a wheelchair.
Even though not all MS patients become confined to a wheelchair, in fact, only about 25 percent do, most lose mobility enough that a wheelchair has to be an option for some activities that require more than they can physically handle.
“Maintaining dignity is a real challenge. Each patient knows that part of their dignity is lost just due to the circumstance. It is hard for most patients to rely on others to do most everything for them,” registered nurse and home Hospice worker, Lindsay Ward said.
Greg Winn, former occupational therapist at Bingham Memorial Hospital agrees, “When a patient is confined to a wheelchair, it becomes the moment of realization that they are no longer independent.”
With absolutely no use of her left side, Colleen waits patiently in bed until Joy, her mother arrives.
Her room is tidy, as is the rest of her house. Not a thing is ever out of place. Joy enters the room and opens the closet doors to allow Colleen to choose the outfit she will wear for the day. Each piece of clothing is placed in an orderly manner so there is no confusion when she makes her decision. It does not take but just a minute before Colleen is fully clothed and one shoe is placed on her good, right, partial foot. Situated into her wheelchair, she is ready to continue on with her day.
Colleen maneuvers her way into the narrow bathroom. Her wheelchair barely fits inside and yet she positions herself strategically against the counter and proceeds to brush her teeth and wash her face while Joy makes the bed and prepares breakfast.
Colleen’s glasses are smudged, so with one hand she wets the corner of a towel, places her glasses on the counter, and wets and dries them before lifting them to the light to inspect. She waits to put on the finishing touches of makeup and do her hair so that she can eat before her mother leaves.
Colleen makes her way to the kitchen moving herself along with her bad foot resting on her good foot so it does not get up under her chair and stop her momentum. The arm on her left side rests motionless at the side of her chair. She often mentions how she wishes she had told the doctor to remove her arm above her elbow instead of where it is presently. It rests just at a place on her chair where it rubs and becomes irritated.
Breakfast consists of a piece of toast and a hard-boiled egg. The kitchen is immaculate and each cabinet and drawer is tidy and neat. The one drawback to the floor plan of her house is the step to the sunk-in kitchen. Colleen’s husband remedied that right off, with a small ramp that Colleen masters with ease. The back door opens and Colleen’s dad, Ralph, comes in to trade her today’s paper for yesterday’s.
A few farming stories and smart-aleck comments are exchanged and Ralph leaves to get back to his daily chores around the place. Joy tends to the laundry, folding the first batch of colors and placing the whites in the dryer for Colleen to fold and put away later. Joy prepares to leave for the day but not before she hands Colleen the phone from the counter, a daily ritual that comes as second nature. Colleen recognizes what a blessing it is to have her mom and dad only feet away. They live in the house just in front of where Colleen’s house was built years before she was diagnosed with MS.
There are many considerations to make when, because of an illness, one must transition from independence to life in a wheelchair. Many questions need to be asked. How will the wheelchair maneuver around the house? Will the home need to be adapted physically with ramps, grab bars, and shower chairs? Will doors need to be removed? What kind of transportation will be needed?
“One of the most important things to remember when working with clients in a wheelchair is that you have to be aware of your surroundings. We take being able to maneuver without restrictions for granted and do not think about how we are going to go for a walk, how we are going to enter a building without a ramp, or how we are going to maneuver a doorway that is too narrow for the chair to fit through,” Former Developmental Therapist Witney Lasley Owen said.
A challenge most people do not think about is the attention a wheelchair draws when an individual confined to one enters a room.
Ward said “You are no longer a normal person entering a room. You are automatically the center of attention when you enter a public place and all eyes are on you because of the chair.”
Later in the morning, Colleen returns to the bathroom to apply her makeup and curl her hair. It is magic to watch how with one hand she works wonders. She places a mirror with a stand on the counter top at her level. She notices that her granddaughter, who loves to help when she does her makeup, has gotten fingerprints all over her mirror.
She cleans it in the same fashion as cleaning her glasses. She is a beautiful woman without all the extra work but when she finishes dotting foundation, smoothing powder, and applying mascara it is obvious how much pride she takes in her appearance whether she is going somewhere or not. Amazingly, she takes the curling iron with one hand and touches up the curls on the back of her head. She applies a little hairspray and she is done.
Colleen may be the exception to the rule but she cherishes every bit of independence that she can maintain and dissuades anyone from doing something for her that she can do for herself.
Winn recognizes, “The day they stop caring and doing things for themselves is the day they truly become disabled. That is when they give up their freedom and submit to the circumstance.”
Chores await and Colleen starts her to-do list. The first task will be to clean the bathrooms. She makes her way to the laundry room to get cleaning rags. Each bathroom is stocked with its own cleaning supplies. She swabs the toilet and sprays cleaner on the outside surface to be wiped down with a dry cloth.
Another cleaning rag cleans the sink and counter area. The main floor bathroom poses a challenge for her in a wheelchair; the counter is too big and there is not enough space between it and the toilet for her to reach the farthest corner so she admits that she never moves the basket.
That job is left for someone else. She is so motivated by the clean bathrooms that the rest of the day is spent dusting, cleaning glass, wiping down all of the kitchen counters, and making dinner for her family.
All of this is done from a wheelchair with only one beautiful hand.