Jodi Oliver refuses to allow ALS to define her life

Written by Cynthia Washicko

Photos by Mariah Carrillo

It began with a tube of toothpaste.

Standing over old blue carpet, staring into the mirror of her mother’s Utah bathroom, Jodi Oliver tried to squeeze the paste onto her toothbrush, but her hands refused to cooperate. She grasped the tube with her right hand and squeezed again. Nothing.

 

A task that used to take seconds now required the full use of both her hands, and even then the toothpaste spilled off her brush and on the counter. Fear sank into her gut and a single thought raced through her head. ­What will I lose next?

 

­­­Just a few months before, Jodi ran in a 5K race, a hobby she picked up with friends. That’s where the betrayal began, ­with November air flowing past her face on the course. Moving with the tide of other runners, she noticed her right calf felt weaker than it should have.

 

Each time her foot hit the ground, the weak calf caused her foot to smack against the pavement. She chalked up the weakness to old shoes or a foot issue — there was nothing to suggest otherwise.

 

Months passed. New running shoes, a podiatrist visit, and the problem was considered solved. With children and a longstanding career as a nurse, what seemed like a small issue was pushed aside.

 

But the weakness in her calf progressed, and a weakness in her hand developed. Simple tasks like twisting syringe caps off or opening packages at the hospital where she worked as a nurse became difficult.

 

She made an appointment with her primary  doctor, which led to multiple tests — an MRI, lab work, and finally a lumbar puncture. All of which were used to rule out what Jodi didn’t have.

 

Her doctor referred her to a neurologist, who assured her the symptoms couldn’t be signs of amyotrophic lateral sclerosis, more commonly known as ALS or Lou Gehrig’s disease. She didn’t fit the typical markers for an ALS patient. She was too young, she was a woman and therefore 20 percent less likely to develop the disease than a man.  It couldn’t be. But she suspected the betrayal was underway.

Amyotropic Lateral Sclerosis

In her gut, Jodi had a growing suspicion of what was causing the weakness in her hand and leg. She demanded to be referred to a clinic with the University of California, Irvine, that specialized in ALS.

 

The clinic doctors ran tests again, using nerve conduction studies to begin the diagnosis. Needles peppered the muscles in her knee, shoulder, and spine, sending waves of painful electricity through her body to determine how her muscles were responding to stimuli.

 

After the tests, she had two weeks of waiting before her follow up appointment. Fourteen days of suspecting what the diagnosis would be, but hoping all the same that her gut feeling was wrong.

 

It was a late appointment­ - 4 p.m. - in the doctor’s small office. Later she would wonder if the doctor scheduled her to receive bad news late in the day. The drawn shades masked the afternoon sun that fell through the window. A motion­ sensing light turned off periodically as Jodi waited with her husband, but a simple raise of the arm was all it took to jerk it back on.

 

Dr. Namita Goyal entered the office with tears glistening in her eyes. The sun slanted through the blinds, casting shadows in the office. Her next words would leave Jodi reeling.

 

 “I’m sorry to tell you this,” she said, “but you do have ALS.”

 

Jodi felt each word smack into her, and she fell into her husband’s arms as tears streaked down her face.

 

ALS. She had ALS. Jodi became one of over 5,500 people annually to be diagnosed with the disease in the U.S. The progressive disease was beginning its cruel work on the motor neurons running from her brain to her spinal cord, eating away at them and their ability to carry electrical signals to her muscles.

What would the disease rob from her first? When would the betrayal be complete?

All over Jodi’s body lights of electricity were flashing, sending signals from her brain to her muscles. But, one by one, those lights would start to go dark.

 

She wouldn’t see her children grow up. Her husband would be left to raise their son and two daughters. She would eventually be confined to a wheelchair. When? When would she lose her independence? What would this disease rob from her first? When would the betrayal be complete?

 

An antique surfboard motif bordered the room and a life-­size replica of a similar board leaned in a corner. Medals from sports teams hung against the wall beside the window like windchimes over a porch, and fan blades in primary colors hearkened back to younger days.

 

An antique surfboard motif bordered the room and a life-­size replica of a similar board leaned in a corner. Medals from sports teams hung against the wall beside the window like windchimes over a porch and fan blades in primary colors hearkened back to younger days.

 

One wall displayed a picture collage of the family. Scott jumping into a river, Jodi with a large backpack on a hike. Climbing rocks, sitting around campfires—all things that would soon be relegated to memories and photographs.

 

One by one the words fell from her lips onto the bedspread before her, voicing the betrayal that had been underway for months. “I have ALS,” Jodi told him. He knew what an ALS diagnosis meant—he had studied the disease in school. He knew that his parents had just informed him of his mother’s death sentence.

 

After that ordeal, she still had to tell her twin daughters, even younger than her son, a task just as heart wrenching.

 

It was her children she clung to during that time after her diagnosis. If it hadn’t been for them, thoughts of suicide would have worked their way into her head. Instead, she began working on memory books for them while her hands were still strong enough. She bought stock paper for future letters to keep herself involved in her childrens’ lives, even after her death. Letters to be delivered on graduation and wedding days, after the birth of a child, ­milestones she wouldn’t live to see, but nevertheless wanted to be a part of.

 

From then on, her life changed. In just months, the athlete who enjoyed spinning classes and outdoor excursions wouldn’t be able to take a step without support.

 

The muscles throughout her body were slowly giving in to the spread of the disease. Her throat was no longer strong enough to handle thin liquids. Thicker, easier to swallow beverages replaced water and juice.

 

The betrayal progressed from her calf throughout her leg, beginning as a foot that slapped with each step and developing into a complete lack of support for the restIn just months, the athlete who enjoyed spinning classes and outdoor excursions wouldn’t be able to take a step unaided. of her body.

 

It started with a cane, some support to aid the muscle fibers in her legs as the disease slowly gained ground in the lower half of her body. As ALS continued its crawling advance through her system, the cane was replaced by a walker.

 

A 2 a.m. trip to the refrigerator became the tipping point toward immobility, and the next step was the one she had dreaded from the moment she was diagnosed. On an early­ morning search for a snack of peanut butter cookies, she reached out for a gallon of milk sitting on the fridge shelf.

 

That simple task was enough to send her to the ground. She lost her one-­handed grip on her walker and toppled to the tile floor, her walker crashing away as she hit the cold tile. Hearing the crash, her husband rushed in to help her up, and she knew the next part of the betrayal had come — she needed a wheelchair.

 

The process of ordering and receiving a customized wheelchair can take months. It took Jodi four weeks to receive hers. The strength left in her right hand was enough to move the levers to direct the chair, allowing her the mobility her muscles were surrendering. The few steps she could take with the walker were a rare occurrence, reserved for trips to a bathroom that now has raised handles so she can get back up.

 

Walking wasn’t the only thing that changed. A cow bell became the surrogate for her failing voice as she cheered on her daughter at running meets. Shirt buttons and shoe laces became daily mountains to climb, impossible without help.

 

Following her diagnosis, Jodi met with leaders from the local chapter of the ALS Association. As part of its mission to advocate for ALS patients throughout the U.S., the association extends its outreach beyond the local outposts into the halls of the Capitol.

 

Jodi joined the group as a remedy to her post­-diagnosis depression. She found solace in telling her story and bringing awareness to the stories of others. Radio shows and social media helped her face the reality of her diagnosis, rather than sink beneath the weight of what she was facing.

 

As part of her work as an ALS advocate, she took a trip with other patients and association members to Washington, D.C. The marble hallways filled with Congressional staffers were an incongruous setting for the group of ALS patients on the trip. Motorized scooters buzzed as the advocates moved among the halls.

 

The meetings, however, were clipped. Only 15 minutes with the Congressperson, just a quarter of an hour to impart the struggles of a disease that limits life expectancy between two and five years after diagnosis. Just a short amount of time to relay the struggles, the heartbreak, the financial and emotional burdens of their own bodies’ betrayals.

 

 The trip was nevertheless rewarding, filled with positive people fighting against a disease that has taken so many lives. But her personal advocacy shifted. Rather than the massive fundraising goals of national campaigns to fund studies and drug trials, Jodi chose instead to focus on the everyday struggles ALS patients face.

 

Facebook and Twitter became her mediums. She began posting pictures and tweeting images of her life with ALS. Her personal, day-­to-­day advocacy didn't focus on stratospheric national goals, but instead the smaller challenges she and her fellow ALS patients must overcome every time they get out of bed.

 

Even in her sleep, Jodi faces challenges. A misshapen plastic bubble covers her nose and mouth, a tube connecting it to the machine that forces oxygen into her lungs. It’s all held up by straps reaching around her forehead and under her ears to meet at the back of her head.

 

The respiratory mask that covers part of her face every night is just one of the changes Jodi’s been forced to endure. Squeezing a tube of toothpaste, cooking dinner, even dressing herself are now almost entirely out of the question for Jodi.

 

She’s heard other patients describe the disease as a glass casket, trapping them in their own failing bodies while their minds remain perfectly healthy.

 

Jodi chooses to take a different route—spending time with her loved ones, making memories they can cherish, that’s where she focuses her energy, on life, not death.

 

“I can get busy dying or get busy living. I choose to live.”

Jodi Oliver died April 2. During the two years she spent fighting ALS, she advocated for the thousands of people living with the disease every day. She is remembered by her husband, three children and a network of friends whose lives she touched.

Overcoming a Body’s Betrayal