The decisions Ila Marie Goodey makes are in every sense of the word life choices.
She's had to choose between marriage and oxygen; between supporting herself and getting the medical attention she needs when her susceptible body catches a flu or infection.In every case, she has chosen life, which for her means Medicaid.
She contracted polio when she was 3 and has since been confined to a wheelchair. A nasty legacy of the polio has been pulmonary hypertension and she can't breathe on her own. When she sleeps a respirator breathes for her. During the day, she relies on oxygen support.
She is no stranger to doctors, hospitals and medical bills. Those, in fact, are her major consideration as she goes about her life.
Without Medicaid she would die, she said, but with it her world gets somehow smaller and she mourns the fact that she has less freedom of choice than many inmates at the state prison.
Her feelings about the low-income medical program are mixed. On the one hand, she owes it her life and is grateful. On the other, she resents the intrusions and lack of personal choice. To stay alive, she lives by government rules, restrictions and policies.
Nothing in life is free - certainly not for Ila Marie.
She receives $571 a month from Social Security. But to be eligible for Medicaid, she can only earn $289 a month, so she turns the balance over to the state as a "spend-down." When she received a tiny cost-of-living increase, she turned it into the state. Without the spenddown, though, she knows she would be on her own. (The Social Services and Health Appropriations Committee has put raising the limit to $401 on a list of items it will consider should additional money become available.)
She can't cut costs by sharing living expenses with a roommate. Anyone she lived with would have to submit to the system's intrusions. A roommate's money would affect her eligibility, too. For the same reason, she cannot get married, and that saddens her. She has been engaged for 17 years to a "dear, loving man," but both realize that marriage is out of the question. In fact, they requested permission from the state and were told they could do what they wanted - if she was willing to give up the medical assistance.
Perhaps the hardest part, for Ila Marie, is not being allowed to work for money - to pay her own way as much as she can. She is highly skilled, a psychologist and counselor at the University of Utah. But she donates her time there, because if they paid her for it, she wouldn't qualify for Medicaid. And the insurance benefits she might have if she were a paid employee would not cover her pre-existing medical problems.
"I am from Cache County," she recently told the Joint Health and Social Services Appropriations Committee at the Legislature, "and we have a very strong work ethic. I've always been industrious.
"This is important to my story: I don't regret that I've worked 20 years without pay. It gives me great personal pleasure to do the work. I do regret that absolutely anyone else can benefit from my work, but not me. If I didn't have to pay anything out, I wouldn't mind. But I do."
Besides basics, she must buy glasses, dental work, clothing. Her electric wheelchair is considered a luxury, so if it wears out or breaks down, she'll have to pay for it or solicit help elsewhere. A woman who cannot breathe on her own lacks the strength to get around in a non-electric chair, and the word luxury rankles a bit.
Some of the regulations don't make sense, she said. For instance, she can't have an $8 flu shot because it is considered preventive. But when her frail body contracts the flu - and it does - the state will pay thousands of dollars for her hospital bill.
She doesn't know why the government would rather pay her $289 a month plus her medical bills, when it could pay the bills and allow her to earn a wage.
Recently, she received a letter from the Hemlock Society of California, extolling the virtues of death with dignity.
"I want to live with dignity," she said. "I don't want to die - with dignity or without it. I still cherish my life."
But this woman, who has won prestigious awards and scholarships and has actively involved herself in political and ethical issues, sees her world getting smaller as restrictions get bigger, and it saddens and frightens her.
When she appeared before the lawmakers, she wasn't asking for more money - or even a different set of rules. She was supplying a face and a story that they could think about and remember when deciding how to fund Medicaid.
Her life depends on their decision.