Thursday, October 16, 2008.
Office of Dr. James Strickland. Neurology. 10:15 a.m.
“Well, Denise. I looked at your MRI results. You and your husband were worried about your coordination issues.” In Dr. Strickland’s voice, still new to her, something was wrong.
They were sitting in Dr. Strickland’s office. Happy faces looked out from family pictures on his walls and desk. In the picture closest to Denise, the doctor smiled broadly, holding a big fish.
But now, in his office, the doctor’s 50’s-something face looked solemn, etched, and far away. He brought out a color picture. Her MRI, she thought.
He held up her MRI and touched it with his pen in the middle. His voice became mechanical, clinical, as if he were reading instructions. “This is the c-spine MRI we ordered. I took a look at it earlier this morning. The radiologist already interpreted it.” His touched his pen to the MRI. “This is your cervical spine. This is your spinal cord.” He drew in a short breath. Denise shifted forward.
“See these spots here?” He tapped his pen up and down the MRI. “These are lesions on your cervical spinal cord.”
Her heart quickened. Did he say lesions? Denise thought. Cancer? She looked at her husband. He was staring intently at the MRI, mouth slightly open.
“From what I can tell, these lesions are the early signs of multiple sclerosis. The radiologist agrees.” The doctor stared directly at Denise. Denise was struck cold and motionless.
“What? MS?” Her voice failed her. She half-whispered, “Are you sure?”
“Yes, Ms. Johnson. These spots show demyelination in a pattern unique to MS. We’ll do more testing. We’ll definitely need a spinal tap.” Did he say spinal tap? “But the non-invasive testing we’ve done so far, such as coordination tests, support this diagnosis, too.” He pointed to her side. “Especially your right arm.”
He then placed a finger to his eyes. “And your vision issues are associated with what’s called optic neuritis, a common MS symptom.” He took a breath. “I’m sorry.” The words lingered like black ribbons in the air. No smiles. No vacation. Nothing happy. Darkness around me.
Denise stared back and forth blankly at the two men. They looked at her and said nothing. She spoke to the ceiling light. “MS? How could I get MS?” Then she looked at the doctor. “Can it go away? Can I take medications?”
“MS, once confirmed, is not curable. We can stall it, sometimes for years, but it gradually becomes more symptomatic. The medications, if covered, do have side-effects.” The rest of the appointment, questions about insurance, medications, treatment, and other particulars were swept away in her private, spinning tunnel. MS? She felt so alone. Am I going to die? Hands on her face under her veil of long brown curly hair, she quietly sobbed. Her head shook slightly, uncontrollably. Trapped.
Hands touched her forearms. Warm, muffled words came in assuring tones. More apologies. Appointment over. Her husband and nurse guided her out. Aseptic smells of rubbing alcohol wafted in and out. Strange, sad eyes tracked her through the waiting room. The car ride home was numb and quiet. She sat at the kitchen table.
Soon, she took a fitful nap. She awakened later and looked out her bedroom window. Dusk. She heard her girls murmuring outside the bedroom door. “Mom needs time,” her husband quietly told them. The sounds of voices trailed away. Her cheeks were tight with dried tears.
Alone with MS. So alone.
In the long nights that followed those days, Denise had dreams of when she was a child. It was summer at the cabin. She was at the lakeshore at an isolated swimming hole. It was mid-afternoon. Bright sunlight danced overhead. A warm breeze brushed her arms. Broad groups of white clouds hung tightly against the bright blue sky.
In one quick movement, her boy cousins grabbed her by the arms and legs and threw her into the lake. They were laughing. She couldn’t swim.
The rush of cold water made her small, 5-year-old heart pound. Her arms and legs, flaying in panic, scrambled for mooring. Her feet stepped up an invisible ladder. She turned her body toward shore and went deeper underwater. She breathed in water. Bubbles surrounding her offered no air. Her cousins yelled for her. Parts of her name registered deep within her. Flits of light and brown cedar water rushed above her head.
Then Denise would wake up, scared and sweating.
A few months into her diagnosis, work proved more difficult. Coworkers stopped talking when she walked by, looking like they felt guilty to be happy. She made more mistakes, including a few brushes with missed deadlines. Her close friends helped her complete reports, while those less close to her became less friendly. Sick days came more often, often without warning. Denise was falling behind.
One night in bed, her husband turned on his bedside light, sat up, and looked at her sternly. “The doctor told us that stress is makin’ your MS worse, and you just aren’t the same. I don’t want that freakin’ hospital stealin’ your health from you. It’s not worth it.”
Surprised but tired, Denise answered, “What about money? Don’t we need my income?”
“Maybe I’ll become shift supervisor.” He said it, but his voice betrayed him. His factory job was the best he could get in their small Minnesota town, but hard work was only rewarded with more work. “We’ll save more.” They already cut expenses. A lot. He added, “The girls could use you at home after school. And you could do things around the house when you are up to it.” Neither knew what she would be “up” to doing. Neither asked.
At least his job gave them medical insurance. But the lean cords of survival tightened. And despite cutting expenses, they juggled surges of bills, calling for more time on late ones. Savings were meager. Their two daughters were in high school. College was a dark cloud overhead that no one dared to look up and see.
With Denise and her husband committed to her staying home, Denise went to her appointments, took Rebif injections, had good periods, and suffered through difficult relapses. She learned how to moderate her activity, planning errands over different days. She did chores as she could, getting help when she could get it.
Her relapses, however, stole more coordination – bit by bit – each round.
Her husband got overtime hours when he could. Her daughters pitched in around the house, sometimes making dinner. Denise thought they were good kids, but they were too young for the weight they carried. This, in turn, weighed on her.
Mundane errands became walls. Grocery shopping was impossible for her to do alone. Her close friends called and visited. But some days, she didn’t want to answer the phone. She sat alone at the kitchen table. She was tired and stressed. Life for her became cold coffee that she had to swallow.
In the darker afternoons of the shorter winter days, she sat at the table and cried.
Fatigue, a frequent intruder, stole her energy and lurked behind her every movement. Her eyes felt heavy.
But help was coming.