The tears flow in the morning as soon as she wakes, sorry to see the light of day, guilty for feeling that way.
This is how bad days begin for Diane Riportella.
Diane, 54, is imprisoned in her own body as a disease with no cure advances. She was diagnosed with ALS, or amyotrophic lateral sclerosis, about three years ago. The degenerative disease causes nerves to stop talking to each other, causing muscles to wither.
Since then, the one-time personal trainer and marathon runner's legs have become useless sticks, unable to support or move her. Her wrists and fingers are limp, and her feet stay pointed unless someone pushes them back. She can't roll over and she can't lift her arms. Her breathing is shallow because her diaphragm barely functions. The muscles on her backside have wasted away to nothing; she sits on skin and bone.
She can feel everything, but she just can't move.
Eventually, she won't be able to breathe on her own. When the machine she uses to assist her is no longer strong enough, Diane will die.
Diane, who was once an energetic fundraiser for cancer research and patients, now spends all day in bed at home in the Cardiff section of Egg Harbor Township. Her friends want to help a woman who helped so many, so they are planning a fundraiser this weekend to help pay for the 24/7 care she needs.
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On bad days, which are now nearly every day, she cries in pain, in grief, in sorrow. She says she's ready to go. Then she cries harder from the guilt of saying that, the fear of leaving her husband, Paul, 41, and her family and friends behind.
She cries because she fears death. She cries because death has not come.
Until recently, Diane Riportella was a vibrant and energetic woman with a penchant for dirty words and dirtier jokes. She has lived a varied life with the desire to do good, help others in need and bring happiness serving as the ribbon tying everything together.
As a 20-something, she taught aerobics and worked with mentally handicapped children. She later worked in real estate and managing gyms, in addition to teaching exercise classes. Somewhere in there, she began holding fundraisers for cancer and other illnesses. She would adopt people who were sick and raise money to help them. She began running marathons and other races to raise money for cancer. She threw parties to raise money. She estimates she has raised about $200,000 for cancer research and individual patients.
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Most of all, Diane empathized with others and often put others' feelings before her own. The day the doctor told her she was terminally ill, she told him she pitied him for having a job where he had to give such horrible news.
Even after her diagnosis, Diane remained positive, said Amelia Moissinac, one of Diane's longtime friends who now helps care for her. "She didn't wallow in self-pity. She looked at this disease as an opportunity to build awareness for ALS and to help people."
ALS, or more commonly Lou Gehrig's Disease, is a progressive neuro-degenerative disease that causes motor nerve cells to stop transmitting signals to each other, said Sharon Matland, vice president of patient services with the ALS Association. Because muscles stop receiving the command to move, they atrophy.
The disease typically affects people between 40 years old and 70 years old, but sometimes it affects younger people. The life span is between three and 20 years, although typically most die within five years. Only about 10 percent of cases are linked to genetics - the rest occur seemingly at random, with no warning. There is no cure and while there is one drug that prolongs life for a few months, the treatment just helps make the patient more comfortable.
Matland said that on average, 5,600 people are diagnosed each year with ALS, with about 30,000 people living with the disease at one time.
Diane's case has now progressed to the point where she needs around-the-clock care. When she's awake, she needs her body repositioned every few minutes. She sleeps about 16 hours per day. Paul works a full-time job at AC Linen Supply, and when he comes home at about 4 p.m., he spends the rest of his waking hours caring for her.
But Paul can no longer give Diane the care she needs, which is why Moissinac and another friend Jill Valentine are holding a fundraiser. "She's having a very difficult time asking for help," Moissinac said. "I think when you're the one helping, it's very hard to receive."
‘I can't fix her'
The emotional roller coaster never ends.
All it takes is a moment on TV to jog a memory that brings tears. Sometimes it's Paul doing something for her that she wants to do herself.
Despite the grief, there are moments every day when Diane returns. Her cheeks widen, her eyes brighten. She smiles and laughs. She tells jokes or remembers a bawdy moment among friends.
But she grieves for what she used to have. She grieves for her relationship with Paul, the way it used to be, how he can't sleep next to her, hold her, make love to her.
Paul is caught between the never-ending cycle of being a caregiver and husband, trying to find the boundaries between the two roles, trying to reclaim some semblance of normalcy. He grieves too. He misses her touch, her life. He's frustrated that he can't heal her.
"I'm a doer. I do things. I fix things," he said. "I can't fix her."
He was in denial after hearing the diagnosis on Sept. 28, 2007. They had been married just four months and were looking toward an active and passionate future. He tried to find solutions beyond what the doctors said. He researched every possible cure - including stem cell scams abroad and weird diets with no chocolate or cookies.
But Diane didn't want to spend their savings or mortgage the house for anything that was likely a crapshoot. She fell into despair, he turned to beer. Their roles as husband and wife became muddled between caregiver and patient.
One night, a few months after the diagnosis, Paul realized how real the situation was as he watched her walk to the bathroom. She used a walker and teetered with careful baby steps. "That bothered me to see that. It bothered me a lot," he said. "It was like, ‘Look at her, this is really happening. This can't be happening. She did a marathon.'"
They began fighting. He felt like hired help, fixing dinner, carrying her around, taking care of their two dogs. He felt her needs were demands, that she didn't care about him. His own fear and grief about what was happening was crippling. He began drinking heavily, but he hid that from her. He would occasionally move her around harshly, sometimes hurting her. And that would start another fight.
"It was more the beer talking out of me than anything else. It was pathetic on my part," he said, reflecting on something about which he has talked to few.
One day, he and his therapist realized he was becoming an alcoholic. He realized he couldn't go for weekly AA meetings because he needed that time to help Diane. So he stopped drinking excessively on his own.
Meanwhile, Diane felt helpless and frightened, her intense independence shattered, her ego crushed by having to ask for help. She felt humiliated every time she had to ask someone to take her to the bathroom, to clean her. She told Paul he could divorce her, that she didn't want to burden him. She wished she could die, just so he could move on.
They worked with therapists and clergy to understand how Diane's disease was straining their relationship and to process their feelings with each other. It's been only within the last few months, Diane said, that the two have found peace and have evolved emotionally to handle the stress and fear. They know how everything will end; it's just a matter of when.
Diane rarely realizes how much she has accomplished in the three years since her diagnosis.
She participated in two half-marathon races, although she was pushed in a wheelchair. She organized parties for ALS patients in the area and even started a conga line at one holiday event. She volunteered with ALS support groups and advocated for the illness in Washington, where she asked U.S. Sen. Robert Melendez, D-N.J., why there's a treatment for male erectile dysfunction, but nothing for ALS.
She earned her recertification to teach yoga, aerobics, senior activities and even personal training, despite her physical inability to do those activities. She let the real estate license and title insurance certification lapse because, she said, she has no plans to use them. The physical certifications meant the most because she worked so hard to obtain them in the first place.
She continued teaching senior-citizen exercise classes until January, when she felt her weakness was affecting their workout.
She also testified before the state Assembly about medicinal marijuana, something she has used often as her illness progressed to handle the pain and stimulate her appetite. Her father, New York State Assemblyman Jose Rivera, even changed his political position on medicinal marijuana after learning how much it helped his daughter, she said.
There's a sign outside the Riportella home on Brielle Lane. Diane bought it before she got sick, but the message has more meaning than ever.
"Cherish yesterday, dream tomorrow, live today."
Friday is a bad day. Diane wakes up crying and stops only in the late afternoon after a dose of morphine calms her breathing and relaxes her.
She wants you to see what a bad day is like so you know at least part of the nightmare in which she lives.
Her only relief comes when she sleeps. She dreams that her body was still normal. She dreams about walking and moving around, of running, of being with her family, of shopping for a dress, of doing the mundane that is now impossible. Then she wakes up and the nightmare returns. She's so angry with God, but her faith helps calm her.
"I pray every day for a miracle. I watch the toes on my right foot and I pray they start to wiggle," she said.
Tuesday, Diane wakes without tears. It's the first time in weeks she welcomes the sunshine coming in the window of her second-floor bedroom. Her face is bright, her voice is stronger, she jokes freely and tells stories of all she's accomplished, surprised when she realizes how much she has done in three years.
Just after lunchtime, her hospice nurse, Theresa Macio, takes Diane's vital signs. She also measures how much oxygen is in Diane's blood. "97! I haven't gotten 97 out of you in I don't know how long," Macio says.
"Ninety-seven? I'm going to live," Diane jokes. "I never get a 97. Usually it's 89 or 90."
On good days, she watches "Dancing With the Stars" reruns. She'll check her e-mail and talk on the phone. She still cries, but the tears are less intense and don't choke her breath. She's no longer angry with God, or perhaps just not as angry.
"Today, I feel like I have hope," she says. "A good day means maybe I can get through this, maybe I'll be able to walk one day again."
If you go
The fundraiser for Diane Riportella will be held Saturday, Sept. 25, from 2 p.m. to 6 p.m. at the Flying Cloud Cafe, 800 New Hampshire Ave., Atlantic City.
Tickets are $20, children younger than 7 are free.
The event will include a buffet, soda, coffee, tea and a cash bar. There also is an auction and door prizes. For more information, call Amelia Moissinac at 609-965-6187 or 609-703-9433 or Jill Valentine at 609-457-0842. You can also email at email@example.com.
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