Katyites are battling MS with humor, hope, and the support of loved ones.
KATY MAGAZINE I October 2017
Lacey Kupfer Wulf and Krista Friedli
Photography by Reinaldo Medina
It’s estimated that more than 2.3 million people are affected by multiple sclerosis (MS) worldwide. MS is an autoimmune disorder that affects the brain and spinal cord and damages the central nervous system. Lisa Farr describes it as an electric cord that has a short in it. Sometimes it works, but sometimes it doesn’t. Multiple Sclerosis is just like that cord. The outer coating of the cord is the myelin sheath. The metal wire inside is the actual nerve. If the cord is frayed it is like a brain lesion. The nerve short-circuits and can cause vision, speech, walking, or swallowing problems. Sometimes you can’t tell that a person with MS is battling, they can have a relapse at any moment and short- circuit the nerve. These Katyites share their MS experiences and explain how they have learned to live positive, fulfilling lives despite their difficulties.
I am Loved Farr is the mom to three sons, Shelby, Connor, and Raymond, and one daughter, Margaret. She calls her family, her neighbors, and her doctors her “support team.” “My husband has been wonderful with helping me with the children, schoolwork supervision, and housework assistance. My oldest son moved back home from UT Arlington to assist me in driving to multiple appointments,” says Farr.
She was diagnosed with MS in 2005 at age 41. At first she felt shooting pain across her jaw, and numbness and tingling in her face and tongue. Then matters spiraled when a flare left her with total blindness to her left eye. Sometimes now she relapses with left-sided weakness to the point of looking like she has had a stroke and episodes of word substitution, making it difficult to communicate. After months of medical tests she says, “I was somewhat stunned when I got my diagnosis. I cried all the way home.”
“Life really is like a bunch of cherries. Some things are sweet and are to be cherished. Other things are bitter and bruised and need to be tossed away. My life has had both.” – Lisa Farr
Because people with MS often feel heavy fatigue, which is a common trigger for relapses, most people with MS need to rest daily to cope. “I have to watch my schedule closely and rank needs above wants to get needs done before the daily fatigue sets in.” Sometimes this means that Lisa sacrifices what she physically can’t do, like more volunteer work or attending some of her children’s other activities. “I have to remember when to take my injections three times a week that help to keep relapses at a minimum,” says Farr. She tries her best to stay positive by going over affirmations every day, “I am loved. I have a great family. Life really is like a bunch of cherries. Some things are sweet and are to be cherished. Other things are bitter and bruised and need to be tossed away. My life has had both. I choose to savor life’s goodness.”
Living for Today Before having MS, Peggy Buffa says she was the picture of health. “I lacked compassion for people who had problems because I hadn’t had any; I learned compassion for other people. I know every person has a battle they are fighting. I’m thankful for that.”
After two years of severe symptoms such as numbness from the neck down, double vision, and motor and cognitive dysfunction Buffa, at age 28, felt relieved to finally have an accurate diagnosis to be able to work toward a solution. She says, “I needed to have someone say what was wrong and treat it.” She got the diagnosis while she and her late husband wanted to have a baby. She said she had given up, but a couple months later they were pregnant with her youngest daughter.
“Live for today. Don’t live for tomorrow. Don’t stress about what will happen. Deal with what you’ve got going on today. It took me years to learn that.” Buffa still experiences right-side weakness, left-side leg numbness, burning in her feet, nerve sensation damage causing her to be unable to use her hands correctly, and constant cognitive dysfunction, but she doesn’t let that deter her quality of life. “Sometimes when I move my neck a certain way, my neck down will go numb. That’s my life. I choose to not be defined by it. MS doesn’t own me,” Buffa says.
Peggy has served at the MS150 with a support and gear wagon to pick up cyclists who need assistance. She advises others diagnosed with MS that it isn’t a death sentence. “Live for today. Don’t live for tomorrow. Don’t stress about what will happen. Deal with what you’ve got going on today. It took me years to learn that.”
Humor and Faith Jennifer Sartory was diagnosed in 2005 at age 40. “I had knee surgery and I couldn’t use the crutches. Then my eyes were starting to look in different directions,” says Sartory. The doctor suggested that she had vertigo. “The next day the left side of my face was paralyzed, when I called the doctor, I was told to go to the emergency room because I could be having a stroke.” An MRI and spinal tap showed that she had MS. “When I was in the hospital I lost my balance then couldn’t walk. After physical therapy, Sartory worked her way from a wheelchair, to a walker, then finally being able to walk again.
“I am stronger than I thought I was.”
Because of MS, Sartory can no longer drive or work. “I have to depend on others to help me get around, the hard part is asking for help” she says. People struggling with this disease can’t do it alone, and close family members are clearly their greatest support.
“Sometimes the fatigue is hard,” says Sartory. “I get what I call owy, numby, tingley feeling. My right hand shakes and my thinking is off.” But she gets through the bad days through her humor, positivity, and faith. She says, “I feel if I stay positive I won’t relapse. I allow myself to cry when I need to but don’t allow myself to dwell on it, I guess I live in denial a little,” she laughs. “I am stronger than I thought I was.”
Makes You Unique Jim Garcia is the father of two daughters, Ashlyn and Alexa. When he was first diagnosed with MS, he felt confused and went through a state of shock because he didn't understand exactly what he had been diagnosed with and what it meant for his future.
"MS is not a death sentence; it is something that makes everyone who has it unique.”
“My father's biggest challenges when it comes to MS are his memory loss. Often times my father can remember an idea one minute and the next minute he may have forgotten completely. He struggles remembering the daily things in life, like dates and times,” says his daughter Ashlyn. “It takes a bit of extra effort for him to remember even the little things.”
Over time dealing with the diagnosis has become easier for him, Ashlyn says that some days are more difficult than others for him. To other people dealing with MS Ashlyn says, “My father would like to tell them that MS is just another label that doctors put on a person. MS is not a death sentence; it is something that makes everyone who has it unique.”
FAST FACTS ABOUT MULTIPLE SCLEROSIS
In the United States, about 200 new cases are diagnosed each week.
You can develop MS at any age, but most people are diagnosed between the ages of 20 and 40.
The ratio of women with MS to men with MS is 2:1.
Two-thirds of people who have MS remain able to walk, though many will need an aid, such as a cane or crutches, and some will use a scooter or wheelchair because of fatigue, weakness, balance problems, or to assist with conserving energy.
Every year, one of the largest MS fundraising events nationwide, the BP MS 150, starts in Houston and ends in Austin.
In 2015, the BP MS 150 raised $20.3 million for MS research.
Currently there is no cure for MS, only medications that help keep relapses at a minimum.
LACEY KUPFER WULF is a freelance writer, wife, and exhausted mother of adorable and active twin toddler boys.