The onset of a chronic disease tears at the fiber of a family. Steve had always been the principal breadwinner. We were forced to trade places, and I wasn’t prepared to enter the corporate world. Before marriage, I had dropped out of three colleges. Steve’s salary was sufficient for me to stay home with our children. Now, the hard boot of MS was kicking me back to school. I enrolled in a small Christian college in Central, SC, now named Southern Wesleyan University. I was as frightened as a new puppy just hit by a car. It had been twenty years since I dropped out of a host of schools in North Carolina. The faculty encircled me with their prayers and extra tutoring. I didn’t know how long Steve would be able to drive the children to school. As I drove the twenty minutes to Westminster Elementary, my car became a rolling sanctuary of prayer for our survival. I was able to finish sixty-eight hours of coursework in sixteen months. One month after my graduation with a degree in education, God blessed me with a teaching assignment.
We were compelled to sell the farm that had been in his mother’s family for nearly one hundred years to relocate closer to my job. Our fifteen year-old and twelve year-old had to leave everything that was familiar to them. The first week on the job I prepared my classroom while Steve, now limping noticeably, handled the details of our move. When school began, the house we were to live in was still occupied. Steve would have to drive the children to their new school forty minutes away. Saturated with stress and exhaustion, bitterness welled within me. God, how could we be in this mess? Alone in my car, cried out in an angry rant interlaced with prayer.
Late September of 1987, Steve accomplished the move to our new home. His condition plateaued for two years. In the winter of 1989, Steve contracted a virus that rendered his left arm paralyzed. His mobility also suffered leaving him off balance. I was afraid to leave him alone while I worked. He insisted that he didn’t want outside help and could manage on his own.After he suffered a fall in our driveway and lay alone for two hours, we found an endearing nurse’s assistant from the hospital’s registry. Stacy* kept our spirits afloat with her bubbling spirit and hand-peeled mashed potatoes.The down side of this and other caregiving arrangements was that Steve wasn’t covered with long term care insurance. When he went to work for Duke, (back in the day), Ma Duke didn’t offer long term care. If he had purchased a policy when it was offered, it still didn’t provide for ‘custodial care.’ My teaching salary became woefully inadequate to handle this.
Since Steve was a very large man, Stacy* needed help with his bathing. Medicare did provide for our local home care agency to send two aides to the house three days a week. It was beginning to take a small army to care for our needs. When I arrived home from an eight-hour workday, the driveway was blocked with cars. They included: the social worker, our pastor, the home health nurse, and our paid caregiver. I felt like a visitor in my own home; I had to park on the street. The necessary help invaded our privacy. We began to feel as if we were living in a glass box with a lock on the lid. We were the “MS family” in the community, an aquarium of illness for all to see.
Living daily with MS brings a roller coaster of emotions. Each downward spiral of the disease’s progression took us on its frantic ride. Even at happy events we were overcome with emotion. My son and I traveled to Charlotte and Atlanta to see professional games in basketball and baseball. We swallowed lumps in our throats as we watched fathers enjoy a night out with their sons. My children needed their dad, I needed my husband, and instead we had been given Steve’s care as a patient.
When events became life threatening, our family operated as a team. “Come quick with wet washcloths, Dad’s fallen on the deck, he’s bleeding like crazy!” My daughter’s voice shook as she called 911 for help. Our son held his dad’s head and tried to staunch the bleeding with a shirt he’d stripped from his own body. Steve directed us with his still razor sharp mind.
“I don’t want to go to the hospital, laying on those gurneys feels like knives sticking in me.” When the emergency responders arrived, he was bandaged and allowed to stay home.
*Denotes name change
Stacy’s* Mashed Potatoes
Peel and boil eight large Irish potatoes water that have been salted (approx. 1 tsp salt, or to taste)
Mash with a potato masher, leave some lumps, (they’ll know these aren’t fake potato flakes!)
Add 3 tbsp. mayonnaise (light or heavy, choose your weapon)
Add gobs of butter (this was Stacy’s secret, but I saw her put 4 sticks in one day!)
Whole milk to the consistency desired.
1 to 2 tbsp. real sugar
Pepper to taste
Mix well
Sometimes this would make enough for leftovers, but only hold over one day. Fluff up in a pot the next day with a small amount of milk. Don’t use the microwave for this!
Note: I never could make them taste like Stacy* made them, but close.
Stay tuned for Trust Me in the Dark Part III