At his Washington, D.C., house, 54-year-old Will Greenfield, who resides with ALS, is surrounded by the medical and adaptive know-how that sustains his care, communication, and independence.
Ice covers sidewalks and aspect streets throughout Washington, D.C., as the town prepares to enter February. Many residents are compelled to remain inside whereas the federal authorities stays caught in a partial shutdown. A partial federal authorities shutdown is in impact. On the similar time, well being care debates in Congress and rising insurance coverage premiums are creating uncertainty and nervousness concerning the continuity of their important care.
Inside his dwelling, 54-year-old Will Greenfield strikes rigorously by way of his lounge in an influence wheelchair that prices greater than most vehicles. He can’t elevate his arms. He can’t scratch an itch. He can’t modify his physique when ache units in. A ventilator helps him breathe each hour of the day.
However his thoughts is absolutely awake.
Greenfield has amyotrophic lateral sclerosis (ALS), a illness that slowly shuts down the physique whereas leaving an individual mentally conscious. He has lived with it for 19 years, far longer than the standard two-to-five-year life expectancy reported by the Nationwide Institute of Neurological Problems and Stroke.
“My physique doesn’t work,” he stated. “However the whole lot inside my head nonetheless does.”
ALS has taken virtually all of Greenfield’s bodily talents. He can’t stroll, communicate clearly, or transfer his limbs on his personal. However he can really feel the whole lot: ache, strain, warmth, and chilly.
“I want I used to be paralyzed,” he stated. “At the least then I wouldn’t really feel it.”
Greenfield’s signs started in his early 30s with weak spot in his legs and frequent falls. Docs first misdiagnosed him. It wasn’t till later that specialists confirmed ALS.
“It occurs slowly,” he defined. “One month it’s your foot. Then your knee. Then your entire leg.”
Inside three years, he wanted a wheelchair. By his 40s, his arms weakened. Caregivers now stretch his physique each 4 hours to stop stiffness and ache.
“You stretched your fingers earlier with out considering,” he instructed me. “I can’t do this. Somebody has to do it for me.”
In 2017, Greenfield skilled respiratory failure and fell right into a coma for a number of days. When he awakened, his voice was weaker, and he feared dropping it utterly.
“My religion saved me speaking,” he stated.
Staying alive now requires fixed medical care. Greenfield will depend on expert nurses, respiratory remedy, dwelling well being aides, ventilators, and adaptive tools. The price of that care is near $900,000 a 12 months, most of it coated by Medicaid.
With out that protection, he says, he wouldn’t survive.
“I might die,” he stated.
His wheelchair alone prices $145,000. His hospital mattress, designed to stop strain sores, prices tens of hundreds of {dollars}. He makes use of suction machines to clear his airway and depends on backup ventilators in case one fails.
This degree of care is unimaginable for most individuals to afford on their very own. Federal well being information reveals long-term take care of medically advanced sufferers can value a whole bunch of hundreds of {dollars} per 12 months.
However proper now, that assist feels unsure.
As February begins, debates over Medicaid and Medicare funding are nonetheless unresolved. On the similar time, many People are dealing with greater insurance coverage premiums and uncertainty about what protection will seem like within the coming 12 months. Incapacity advocates warn that proposed Medicaid funding caps or cuts may scale back entry to home-based care and pressure folks with extreme disabilities into nursing properties.
For Greenfield, that chance is terrifying.
“If Medicaid is lower,” he stated, “I’d be again in a nursing dwelling. Or useless.”
He spent 5 years in a nursing facility earlier in his sickness, together with in the course of the COVID-19 pandemic.
“There have been two or three nurses for over 40 sufferers on ventilators,” he stated. “That’s not care. That’s survival.”
Greenfield says lawmakers perceive the results of their selections.
“They know what they’re doing,” he stated. “You may see it within the payments they write.”
Regardless of the whole lot, Greenfield nonetheless finds pleasure in small moments. Bible research twice per week. Visits from mates. A very good meal cooked by his caregiver.
“When Marie cooks, it’s day,” he stated.
Unhealthy days come when nurses cancel shifts, tools fails, or he thinks concerning the life he as soon as imagined.
Nonetheless, he stays concerned in advocacy and coverage conversations.
“I’m nonetheless right here,” he stated. “I nonetheless matter.”
As lawmakers argue over budgets and well being care funding, Greenfield desires folks to grasp what these debates imply for folks like him.
“Well being care isn’t politics to us,” he stated. “It’s life.”
Amyah Wright is a broadcast journalism main at Howard College. You may comply with her on Instagram at @amywah.wright
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