As a child, I didn’t know that I would become an MS warrior. I was the one who fell down the steps, broke bones during backyard kickball games, randomly dropped things or couldn’t walk a straight line. I was the one who got teased for being the “klutz.”
In high school, I had mononucleosis five times and missed weeks of school every year, to the point of almost not graduating.
Nobody knew there was an underlying problem that would affect the rest of my life. Most people didn’t think that multiple sclerosis would affect children. Nobody connected the things that kept happening to me as symptoms of a disease.
But events kept getting closer and closer together.
After I met and married my husband, Mark — my hero — three weeks out of high school, things seemed to slow down a little bit. Home and family responsibilities quickly replaced school obligations with the birth of our children, and my body had better chances to rest during the day.
But things began to show up again, this time in apartments instead of schools. I fell down stairs, on sidewalks and getting out of vehicles. I continued to break things until I finally had no choice but to see my family doctor.
When the doctor told me I had multiple sclerosis, I thought, “Well, thank God.” For me, hearing his diagnosis was a huge relief because it meant that I wasn’t imagining my symptoms.
Primary Progressive MS wears the body out at a continuous rate. I went from walking normally to using a cane to a three-wheel scooter to, now, a power wheelchair. Throughout all of these years, my husband and my children took very attentive care of me.
But in 2016, after my husband’s third heart attack, we were told that he would no longer be able to take care of me at home, and that I was going to have to go to a nursing home.
It’s terrifying to be separated from your family. The sounds you hear aren’t the sounds of your family. The faces you wake up to aren’t faces you know, and the idea of personal freedom becomes non-existent. There is a sudden feeling of unimportance, a sense of invisibility — or worse, a “Dumbing Down” (in which a resident is made to feel inadequate and inferior).
In nursing homes, sometimes there is not enough staff to provide good care or food, properly laundered clothing and sufficient bathing and cleaning supplies. Sometimes a resident finds respect, dignity and caring. Often, there is frustration, overwork and resentment on the part of the staff and administration and the corporate owners.
Observing these dynamics, I began to investigate the federal and state statutes for nursing facilities. I was asked to be the Resident Council President in two different facilities.
It is now an honor for me to be able to ask questions of corporate owners and legislative representatives as to how the lives of residents and staff alike can be made more satisfactory.
Fernihough, a resident of a nursing home in Jeffersontown, has two children and five grandchildren. Catholic Charities of Louisville’s Long-Term Care Ombudsmen encountered her in their work of advocating for those in nursing homes, assisted living communities, and personal care and family care homes. They may be reached at 800-854-3233 or by emailing erhodeschism@archlou.org.
