How to Deal When the Shit Gets Real Podcast · Rietta Boksha

Maevine: Strength and Surrender | Living with Chronic Illness and Caring for a Parent with Dementia and ALS

·52 min·1 clip

Technique.

Riera opens the conversation with the show’s signature question. Mayvina answers with humor, saying sometimes you just shove it in a box or a jar and deal with it later. She then gives a plain introduction to herself as a mother, a daughter, and an artist. The talk starts light, but it does not stay that way for long. It shifts quickly into the hard work of living with illness and trying to make sense of a parent’s worsening condition. Mayvina describes noticing that something was clearly wrong with her mother. She talks about the frustration of insurance steps and red tape that kept getting in the way. Eventually she went to the ER and refused to leave until her mother was evaluated. The doctors first diagnosed her mother with myasthenia gravis, but that treatment did not help. Mayvina says she suspected something deeper was going on, including ALS or dementia, and she also noticed her mother sometimes speaking a Native American language she had not used since she was three. That detail made it clear to her that the problem was affecting her mother’s brain. The family then had to sit through a long stretch of testing and waiting. It took months to get into Stanford, and more testing followed after that. Along the way, the possibility of a genetic form came up and then was ruled out. The episode also touches the strain of distance. Mayvina was in Oklahoma while her parents were in California, which made the caregiving burden feel even harder to carry. Her story keeps circling back to the same practical problem: when you know something is wrong, how do you keep pushing until someone listens? The answer here is part persistence and part humor. Near the end, Mayvina says she deals with hard illness by making a joke of it. She tries not to take all the bad too seriously and looks for the light inside it.

As heard by us

A blunt caregiving conversation that stays warm without pretending the hard parts are tidy.

The conversation follows Mayvina as she talks through her mother’s serious illness and the long, frustrating path of ER visits, insurance delays, a wrong diagnosis, and more testing. What gives it weight is how plainly she says it all.

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Why you'd press play

For when caregiving turns into medical red tape and you still need to find the joke.

Read the full recommendation in PlayNext →

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