When Debbie and Andrea’s sister shut down and stopped talking, after she publically obsessed over the beauty of her own feet, after the length of her sentences fractured into one word, after her blood was sent off for scrutiny, the pieces of a sad family puzzle finally fell into place. Their sister has a newly identified genetic mutation called chromosome 9 open reading frame 72 (C9ORF72) that can cause either frontotemporal dementia or motor neuron disease.
She stares at me, owl-eyed, empty. There is no embarrassment when time ticks on. She stares. A sound breaks her gaze and her eyes lock on to a new target. She is nowhere to be found. The old her, that is. The woman who showed such immense joy and love as a mother is gone. Her husband moves her around the streets of their city like he is pulling a 100-pound weight on wheels in his hand. She goes with the flow. He and the children have built a life around this new woman – this wife and mother who is lost to a genetic disease that has stolen everything human about her. She is only 38 years old. She no longer speaks. She stares. She is led to the bathroom, to the shower, to the table where they put a fork or spoon in her hand for her to eat.
There was an unspoken script in a young girl’s life growing up in a cultured family in Brescia, Italy in the 1970s that she would go on to a university to study the humanities. But this young girl had no interest in the arts or classics – she did poorly in Latin and Greek – and she had her sites set for medicine. Her mom grew up in a transitional generation in the early 1960s but observed feminism through a telescope. She knew she wanted something different for her only daughter, but she was still trapped in the tradition that etched out life for an Italian girl.
The man is in his early 60s and his medical plate is full: an HIV diagnosis four years ago and well before that he began treatment for diabetes and coronary heart disease. For the most part, these conditions didn’t stop him from juggling the many things he loves to do: swimming, museums and dinner with his partner of 24 years, seeing his grown children and grandchildren, volunteering at a high-risk behavioral health group in his town, gardening, cooking – and oh, if he didn’t have enough to do, he went back to school for the fun of it. His schedule is filled with nine credits at a local college.
Eight years ago, the guy could stand up at a meeting and people would sit a bit taller and listen to what he had to say. On the way home, he would sit comfortably in his 1955 DeSoto and grin and wave to passersby. Then, people started honking when he passed and they were anything but happy to see his vintage car. It was happening with increased regularity. He’d scream back. But then noticed that he’d get to a turn in the road and press his foot down heavy on the brake because he didn’t know which way to go. A short time later, the landlord complained that it looked like a three year old had filled out the rent check. None of the information was in the right place. His name was scrawled at the top of the check. It was random – and scary.
The guy is good with people, that’s for sure. Handsome, athletic, good-witted. His gaze has its own smile. He’s charming. It took him three years to get here and since his first arrival last August he’s been back two more times. He is wearing a pair of gray REI shorts, a pullover and black sneakers that will be untied and removed from his feet in 90 minutes. He needs help backing into his chair. In better days, I bet you he would sweep his wife off her feet. His arms still look strong.
After 20 years of marriage, after raising two kids, after building a farm and tending horses and dogs, Caroline knew this much about the man she loves: he is tender-hearted, fun-loving and never lets stress land too long on his shoulders. Four years ago, the old Nick somehow morphed into a new guy, one who is not so patient. A guy who lost his social edge and seems unable to read faces. He is tired and withdrawn. “He’s just not the same guy,” she says. “I want him back."
The man falls out of the bed. It breaks. This is not the first bed to drop under the weight of his flailing bones and thrashing limbs. The bed is now braced by a two-by-four, and it is only a matter of time before it will go down. His balance is poor and he falls out of the bed. This happens all the time. It is not his fault that he has destroyed three beds, two couches, countless toilets seats and an array of nearby furniture. He crashes and trips into things. His body outwits his mind. It throws him around, shamelessly.
Mary and Dick had almost 50 years walking arm-in-arm in marriage and in life when she began holding on tighter than she ever had. Her pace slowed. She pulled on her husband’s arm. It was a subtle change that would give way to other curious happenings around their home. She was the consummate organizer, planning trips that would take them all over the world, managing the bills, the meals, the social activities. She was an education champion and elementary school office manager. Now, everything was taking more effort. Bills went unpaid. Things went missing. She couldn’t plan international trips. She was frustrated. She had fits of anxiety and anger, uncharacteristic of her naturally easy-going way.
Tony was never far from a book. Much of his adult life was built around learning, and then teaching: first at Stanford where he was finishing his doctoral degree and then crisscrossing the country in pursuit of providing knowledge to others. His life was the recipe for an academic: intelligent, serious and compassionate about ideas. It is no wonder that Tony, who in the mid-1970s as director of a national center for bilingual education training, mentored the girl he would marry. Miriam was a teacher and administrator when she accepted a job in the program, and a year later he asked her out on a date. Soon after, the program lost its funding and Tony fired her, and soon after married her, and encouraged her to pursue her own doctoral degree, which she did.