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Season to Share: Young mom, used to giving, now in need after lupus hurts career, finances

Palm Beach Post - 11/30/2021

Samantha Johnson was used to being the one offering assistance.

"I like helping others," she said. "It just makes me feel good. I'm always the go-to person even with friends, lending a helping hand."

The daughter of a minister, she worked as an addiction counselor at a treatment center and volunteered for organizations that included the Riviera Beach Family Resource Center, the YWCA and the Martin Luther King Jr. Coordinating Committee Palm Beach County.

2021 Season to Share: Meet your neighbors in need

She has received more than a half dozen awards for her community service.

Johnson, then a 29-year old single mother of two, was working full tilt in January when she began to feel poorly.

She developed a rash over much of her body. Lymph nodes in her neck and under both arms became swollen. She had body aches and a pervasive, seemingly never-ending fatigue.

Walking without assistance became a struggle, as did warding off depression.

She said she asked her employer for accommodations, a change in hours, different responsibilities. Her employer told her she'd have to transfer to another facility 20 miles away.

Still struggling and certain she couldn't manage the longer commute, Johnson said she had no choice but to resign.

Medical tests initially did not identify the problem, but they did offer up some news. Johnson learned she was pregnant.

The joy of that news in June was short-lived; a month later, she was diagnosed with lupus, a long-term autoimmune illness characterized by fatigue as well as joint and skin pain, that can damage internal organs.

There is no cure for lupus, but painful flare-ups can be treated.

The illness may be hereditary and sometimes runs in families.

Johnson has two cousins with lupus. A late aunt also had the disease.

For Johnson, lupus wasn't just a devastating diagnosis; it was the beginning of a physical, emotional and financial descent from which she has yet to recover.

Worst of all, it threatened the baby she was carrying. She wanted the baby — a boy — to make it. She wanted to carry him to term, to give him the best possible chance to be healthy.

That, like so much else in her life, was out of her control now.

With no job, Johnson was forced to give up the three-bedroom house she was renting in Riviera Beach. She and her two children moved into her mother's two-bedroom home.

Accustomed to independence and self-sufficiency, she suddenly couldn't pay for her car, for its insurance or for basics for her daughters, aged 10 and 7.

She had no idea how she'd get maternity clothes, bottles, a breast pump, a crib or the numerous things needed during and after pregnancy.

"It's extremely difficult for me," she said. "Given my disease, I'm very limited in what I can do, and that's not normal for me. Having to depend on others now, it's like my world has turned upside down."

As doctors tried to chart a medical path forward for her, lupus kept digging in harder.

"It got to a point where I couldn't even walk," she said.

At one point, she fainted in the bathroom at her mother's house.

"Can you imagine if that had happened when I was alone at my house?" she asked.

In addition to difficulty walking, fatigue and joint pain, Johnson developed a new malady: chest pains.

Her mother insisted that she go to the hospital, where she was diagnosed with pericarditis, an inflammation of the sack surrounding her heart.

Doctors inserted a tube into her chest and drained off a liter of fluid.

The procedure went well, but, in the recovery room, Johnson went into cardiac arrest.

Still struggling with memory loss, Johnson said she was told it took 30 minutes to get her heart to beat again.

She slipped into a coma, was placed on a ventilator and had seizures.

Doctors weren't sure if she had suffered brain damage. The COVID-19 pandemic limited visitors. Her mother and an aunt were allowed to see her, but Johnson was in very bad shape.

And what of the baby?

Slowly, brain scans began to show more and more activity. Johnson needed physical and speech therapy.

"I worked very hard to get home to my 10- and 7-year old daughters, whom I missed dearly," she wrote in a description of what she calls her "lupus journey."

She added: "I am fearful that I won't make a full recovery or that my son will not survive or be normal. I don't know if I can overcome these fears any time soon."

Johnson said her prayers, those of her mother and of her daughters — taught to pray by their minister grandmother — are a source of comfort and strength.

"I have days where I really do struggle with the reality of my disease," she said. "There are things that are out of my control at this point. God has gotten me through."

Even as she struggled to recover, Johnson had an overriding worry: the fate of her baby.

"I was in a comatose state for weeks," she said. "I wasn't able to give him the nutrition that I would normally have provided because of that."

Due on Jan. 18, Johnson said she was determined to carry the baby as close to term as possible.

By early November, Johnson's body could carry the pregnancy no further.

Her son was born on Nov. 9.

The baby was tiny, 2.2 pounds, but Johnson and the baby's doctors and nurses quickly learned he has all of his mother's grit. There were no immediate, glaring medical problems other than those posed by his small size.

Johnson named him Amari Livingston Johnson Davis.

Amari, she said, means Miracle of God in her Bahamian culture.

The path back — to better health, to economic security — will be long and difficult, Johnson said.

She's still battling a debilitating illness, praying for her infant son and wants, somehow, to give her girls some semblance of a normal holiday season.

In years past, Johnson said she'd make sure she took her daughters to holiday functions, basking in their enjoyment of the season.

"This year, it's been a stressor," she said. "Whatever it is, wherever they want to go, mommy makes it happen. This year has been different."

SAMANTHA JOHNSON'S WISH

Johnson needs things for her new baby, including diapers, a breast pump, a bassinet; infant boy clothing; baby blankets; a car seat; and a stroller. She would like items for her girls to help them through this difficult time, including clothing sized 16 and 16x; sneakers for girls size 8; laptops for school; and two full size mattresses for bunk beds. General financial help is greatly needed to help with Johnson's car payment, car insurance, food, housing, cell phone bill, energy bill, maternity clothes, furniture, and a laptop for Johnson and money to return to school.

Nominating agency: Martin Luther King Jr. Coordinating Committee.

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