0:00

Committed is a production of My Heart Radio. Let's

0:03

turn to healthcare. I want to bring in Renee. Welcome,

0:05

Thank you so much. What is your solution

0:08

to ensure that people have access to quality

0:10

healthcare at an affordable price?

0:13

Um, I believe the solution and I'm and

0:15

I'm actually feel very strongly about this is that

0:17

we need to medicare for all. That's

0:19

just the bottom line. You're

0:23

going to have such great

0:25

healthcare at a tiny fraction

0:27

of the cost, and it's gonna be so

0:30

easy. We begin

0:32

the long and difficult struggle

0:34

to end the international disgrace

0:37

of the United States, our great

0:39

nation being the only major

0:42

country on Earth not to guarantee

0:44

healthcare to all of

0:46

our people. Healthcare

0:50

is a complicated topic in our country.

0:52

For a lot of Americans. It dictates things like

0:55

where we work, how we work, where we live,

0:57

and even who we live with. A

0:59

recently met a couple Larry and Linda

1:02

Draine. They've actually

1:04

had to separate after thirty three years of marriage

1:06

in order for Linda to get the healthcare that she needs

1:08

to save her life. See.

1:11

When Larry retired, his benefits exceeded

1:13

the limit to qualify the couple for ten Care, that's

1:15

Tennessee's public insurance program,

1:17

and that placed them in this kind of purgatory where

1:20

they didn't qualify for subsidized benefits,

1:22

but they also couldn't afford private insurance. Linda

1:26

has a severe form of epilepsy, and

1:28

the medications that keep her potentially deadly

1:30

Caesar's at Bay cost thousands of dollars

1:32

per month in

1:35

the space of like three or four day age where

1:37

we basically made the decision that we would separate.

1:40

The day after Christmas five years

1:42

ago, we separated. I

1:44

couldn't imagine what

1:46

that would mean, you know, to be

1:49

separated. When

1:51

we took our vows, it

1:54

was until death do us part.

1:59

You go day to day and there's

2:01

this emptiness, there's a hole

2:04

in your life. You've spent all these

2:06

years with that person, and all

2:08

of a sudden, you're alone that

2:11

person. You know, he's across

2:14

town and you're

2:16

not a widow, and he's not

2:18

a widower, and you just can't reach across

2:21

the miles and touch him.

2:25

I'm Joe Piazza. This

2:28

is committed. We

2:58

recorded this episode last summer, and

3:00

I've been thinking about it ever since. Lynda

3:03

and Larry's story is something that could really

3:05

only happen at this moment in history when

3:08

healthcare is such a contentious subject.

3:12

But let's back up a little back

3:14

to when the two of them met at the University of Tennessee.

3:24

Larry and Linda were both majoring in social work.

3:26

They had one class together, human services.

3:30

Linda'sad across the room from Larry, but even

3:32

though they were in the same room, there wasn't much of

3:34

a chance the two of them were ever going to talk. I

3:37

was probably pathologically shy. She

3:39

was really, really, really shy. Probably

3:42

on my own, I probably would have never ever

3:44

said hello. One

3:48

day, the professor a s Larry, what happens when

3:50

a person takes heavy duty psychiatric meds?

3:54

Larry, for Allish Synus was quick with his answer,

3:57

where people's mouth gets swollen and they can't

4:00

really talk. So one day he asked me,

4:02

he said, Larry, can you tell us how

4:04

these people with tarted discomnecious sound?

4:07

So I started and I la la

4:09

la la la like that. And about

4:11

that time, across the room I

4:13

heard from Linda la la la

4:16

la la. And I'm thinking, what

4:18

poor caste not trying to be serious,

4:21

and this woman is making fun of these people.

4:23

Well, it turned out she was having a grandma

4:25

seizure. This might be our first

4:27

and probably only love story that begins with

4:30

a grandma seizure. That's

4:32

the type of seesuar and most people picture when they think

4:34

about seizures. The person loses

4:36

consciousness and has these violent muscle

4:38

contractions. Linda

4:40

has been having grandma caeesars her entire life.

4:43

She's been epileptics since birth. It

4:45

has been one of the hardest,

4:48

toughest experiences in

4:50

life, but it's been a good

4:52

thing too. It's definitely

4:55

made me a fighter because these

4:57

seizures were never under

5:00

control. They were very, very

5:02

hard. I was having like

5:04

fifteen grandma a day and

5:06

even more complex partial

5:09

seizures. And she

5:11

was always treated like she wasn't

5:13

as smart as other people and things like that, and she

5:16

was, you know, and she could do things

5:18

just like anybody else. So strange.

5:21

We're both really shy people, and the grandma

5:24

seizure brought us together for whatever reason.

5:26

I think. The day before finals,

5:29

I was in the cafeteria at UT She

5:31

was sitting down and she noticed me walking

5:33

through and she said, hey, you know all

5:36

this stuff. Would you help me study for the final

5:38

At the time, I didn't realize it was a clever manipulation

5:42

on her part. I tell myself

5:44

that now. Anyway, we got to talking,

5:46

and I don't know something happened.

5:49

I haven't always been married to my wife,

5:52

but I don't remember what it was like not being

5:54

married to her. Linda

5:57

has always been shy too, It's part

5:59

of the reason they work so well together. I

6:01

could not imagine myself at that

6:03

time ever speaking out,

6:06

and I think that the epilepsy

6:09

made me that way because I

6:12

was never really wanted

6:14

to make friends easily since throughout

6:17

my life I had been

6:20

so badly discriminated against

6:22

and misunderstood due to the seizures.

6:25

The epilepsy in that class

6:28

really did draw me

6:31

to Larry that day,

6:33

because he did begin to speak to

6:35

me, and I knew that he was

6:37

somebody I would feel comfortable studying

6:40

with. They dated for

6:42

about six months before they decided to get married.

6:45

They knew right away. It was

6:47

more kind of a why don't

6:49

we than anything else. You know, at that time

6:51

we had been together for a while. We looked

6:53

at each other and both of us knew what the other

6:55

one was saying. It was like, well, why don't

6:57

we get married. Why don't we just make this whole legal

6:59

and let's get married. And I think

7:01

she looked at me and she said when she

7:04

decided she wanted to get married on March the twenty

7:06

one, because that was the first day of spring. The

7:09

thing when shy people get together is

7:12

nobody is really all that has heard of it. It's

7:14

kind of one of those things where you look at each other's until

7:16

finally somebody speaks and you know what to

7:18

say. We were on the same page.

7:21

When you feel like you have found

7:23

the only person in the world

7:25

who's patient with them and

7:28

who is there for you, you just

7:30

know you've come into a

7:33

bond and in a relationship with

7:35

that person. And I know that

7:38

with Larry, he wanted

7:40

to be there for me, and

7:44

Linda needed someone to be there for her. When

7:47

you have so many seizures a day, working is nearly

7:49

impossible. In fact, life

7:52

is pretty impossible. And

7:54

it seemed like her life was basically consisted

7:56

of having seizures, getting

7:59

over having aegures, having medication

8:01

side effects, and she went through a lot

8:04

of time where things were not very fair

8:06

to her, were a lot of hard times. There

8:08

were a lot of times. At first she didn't do very well. There

8:10

were a lot of times where I

8:12

didn't do very well. I wasn't as good

8:14

as taking care of her as I would like to be.

8:17

Sometimes it was really really confusing.

8:19

It seemed like there were no answers at all. So,

8:22

you know, things were hard. There were times where

8:25

because of work or whatever, I had to leave her

8:27

alone where she didn't need to be left alone. So

8:30

we were kind of forged through a lot of hard

8:32

times. We'll

8:35

be right back after a short break. In

8:52

two thousand one, Larry was at work in Nashville

8:54

when he got a call from Linda saying he had to

8:56

come home immediately. I

8:59

drove um and when I got there, I

9:01

couldn't find her. I went and

9:03

I looked where we lived, and

9:05

I couldn't find her. And finally I went back in the bedroom

9:08

and I pulled back the covers as

9:11

she was in bed, coated and blood. It

9:13

looked like a serial killer had come into our

9:15

house. That she had been

9:17

standing on a staircase. She'd had a grandma

9:19

seizure, had fallen down the stairs

9:22

and hit her face on the banister

9:24

and literally broke her face. The

9:27

doctors finally said, look, because

9:29

of where your seizures are,

9:31

our medications not gonna work, and

9:34

you need to have the seizures or you know. She

9:36

basically said, your choice is

9:38

either to die or to get to the

9:40

point where you can't take care of yourself anymore.

9:44

Linda had a surgery called a temporal abectomy.

9:47

It's supposed to lower the amount in severity of seizures.

9:51

Without insurance, a surgery like that can normally

9:53

cost a hundred thousand dollars or more. Luckily

9:56

for Linda at the time, she had Medicaid and

9:59

that's her dree. It changed everything

10:01

for Linda. Instead

10:03

of being a zombie from all the seizures

10:06

and being over medicated, all

10:08

of those side effects from the meds were

10:11

over with, and I had

10:13

less medication, and I

10:16

just became more alert and

10:18

more able to function and

10:22

more verbal and

10:25

and I laugh more, and I enjoy

10:27

life more, and I'm more involved

10:30

and I love it. It was a very

10:32

big positive change. Even

10:35

though she was doing better after the surgery, Linda's

10:37

epilepsy wasn't gone. She

10:39

still needed expensive medications, medications

10:42

that without insurance would have cost thousands

10:45

of dollars per month. But it was okay

10:47

because she had ten Care, Tennessee's Medicaid

10:49

expansion. But in two thousand

10:51

three, the Democrat phil Bredeson was elected

10:54

governor of Tennessee. Facing a

10:56

massive budget deficit, Bredeson made cuts to

10:58

ten Care. Now, how care

11:00

law is incredibly complicated even for

11:02

people who study and work with healthcare

11:04

law. So to better understand

11:07

what happened, we talked to Gordon Bonniman. He's

11:09

an attorney who lives in Nashville who helped Larry

11:12

and Linda navigate the complex health care system

11:14

in Tennessee in two thousand three, two

11:16

thousand before, Governor Philip Brattison

11:19

came into office with grave

11:21

reservations. He came out of an HMO

11:24

background. He was an insurance executive

11:26

who had founded and run health

11:28

maintenance organization, and he had strong

11:30

feelings that the program was too generous

11:33

and covered too many people and covered too

11:35

many benefits, and dramatically

11:38

altered the program and basically

11:40

brought it back down to the

11:43

narrower program that it was

11:46

before, in

11:48

fact, covered even smaller categories

11:50

of people. Larry was terrified

11:52

that Linda was going to lose our coverage. That's

11:54

when he started writing letters to the Governor. Here's

11:57

Larry, and so I

11:59

wrote him a letter and I said, dear Governor Britos,

12:02

and please do not kill my wife. Around

12:06

this time, Linda started having more seizures. He

12:08

needed more help. Larry

12:10

was sixty two and he thought that if he took an early

12:12

retirement, he could take care of her, and that way

12:15

they wouldn't have to hire a caregiver. Alry,

12:18

a caregiver would have been insanely expensive. They

12:21

meticulously planned it out and

12:24

we were going to be poor, but

12:27

we were going to make it. So I

12:29

took retirement. Two months

12:31

after that, the people

12:33

from Social Security called us in and they said,

12:36

you guys make way too much money and

12:38

unlike, how in the world

12:41

do we make way too much money? And then they said, well,

12:43

your retirement is on earned income. I

12:46

said, I've worked for it for forty seven years.

12:48

How can it be unearned income? And they said, well, legally

12:51

it is. And they turned to Lyndon and they said,

12:53

we're going to take away your s s I. We

12:55

were gonna love she was gonna lose over seven and

13:00

lose her health insurance too. S

13:05

s I stands for Supplemental Security income.

13:08

It's administered by the Social Security Administration

13:10

and provides cash assistance for people who are

13:13

over sixty five or have a severe disability.

13:16

Here's Gordon Bodimen again to explain why Larry

13:19

and Linda were going to lose Linda's SSI and

13:21

their health coverage. When

13:24

you put together their income, they

13:26

were still below poverty, but they had too

13:28

much to qualify for the categories

13:30

that covered elderly in Tennessee

13:33

even if you have a severe disability

13:36

as Linda does, or

13:38

if you're over sixty five. So that's

13:40

the problem for them. They live in the wrong

13:42

state. If our state had followed

13:45

the lead of most other states, including most

13:47

Republican states, they would

13:49

qualify. But because they

13:51

had air quotes too much income,

13:54

even though it's below poverty, they

13:56

fit into these strange gaps

14:00

in the law where they don't qualify

14:02

for anything. As a result,

14:04

we had to advise them the only way

14:07

that they could qualify would be to

14:09

divorce, because in the

14:12

way Medicaid works, if a couple is

14:14

married, their combined income is counted,

14:16

and that made Linda ineligible.

14:19

So I can tell you it was not

14:22

a position as a lawyer that ever

14:24

want to be in. To look at a

14:26

couple who have been married for decades and are devoted

14:29

each other and say, I'm sorry, but

14:31

the only way one of you can receive life

14:33

sustaining care is to divorce

14:35

and live separately. And I think that's

14:37

just a testament to how cruel

14:40

our laws have been. Here's

14:43

Larry So in

14:45

the space of like three or four day as we basically

14:48

made the decision that we would separate. The

14:50

day after Christmas five years

14:52

ago, we separated. They

14:56

legally separated. They

14:58

still loved one another, they still wanted

15:00

to be married, but separating

15:02

was the only way they could make sure Linda would get the

15:05

kind of health insurance she needed to stay alive.

15:08

The fact that they had to separate at all is confusing.

15:11

That this loophole, the strange loophole,

15:13

would allow her to keep her health coverage. We

15:17

tried to say, well, she

15:20

can't live without insurance

15:23

if she misses medicine. If you have epilepsy,

15:26

there's something called status epilepticus,

15:29

which means you go into seizures until you die.

15:31

We've known two people who have died with

15:33

seizures. We're like, look,

15:36

this is life threatening to us, and

15:39

they're like, it's the law. You

15:42

know, there's nothing that we can do about it, you know, I mean, and

15:44

I mean, they weren't hateful people, you

15:47

know, they weren't. Ha ha ha.

15:49

We're gonna sock it to you. They were, you

15:51

know, doing their job. They

15:54

just said that I couldn't stay with him,

15:57

that I could spend only

16:00

so many days a year overnight

16:02

with him, or that would count as

16:04

time against me because that would

16:06

mean I was living with him,

16:09

And so we have

16:11

to be very careful not

16:14

to spend a lot of

16:16

time together. It

16:18

all boils down to support. Larry

16:21

isn't legally allowed to support Linda financially

16:24

or as a caregiver. If

16:26

the government believes he is, she can lose

16:28

her health insurance. The

16:31

last weekend, we spent four days together.

16:34

Those four days is the longest period we have

16:36

been together in the last five years. We're

16:39

trying to find out where

16:42

do we go, what are our options. We're

16:46

going to take a quick break here. When

16:48

we get back, we'll find out if Larry and Linda have any

16:50

viable options where Linda can stay healthy

16:53

and also be with her husband. So

17:16

now Larry and Linda are living apart. I

17:19

can't imagine what that must have felt like. I

17:21

haven't been married for so long. Vowing

17:24

to be together until death do you apart, and

17:27

then being forced to separate. It

17:31

was death, pure

17:33

and simple. It was death. It

17:36

was everything that defined reality,

17:39

everything that made us who we were. It

17:43

just wasn't so anymore. I

17:45

couldn't imagine what

17:48

that would mean, you know, to be

17:50

separated. I couldn't imagine

17:52

anything like that ever being a

17:55

reality because I didn't think that the

17:57

government ever did such a thing.

18:00

And when we took our vows

18:03

it was till death do us

18:06

part. I.

18:08

I was horrified and I

18:11

was very scared. I

18:14

was very angry, and

18:17

I felt like this

18:20

is hopeless. What are we going to do?

18:23

And I didn't know what I was going to do. Because

18:26

I have a lot of things

18:28

that affect my life besides

18:32

not being able to spend

18:35

my life with my husband. I

18:37

have to find answers. It

18:39

was a horrible experience because

18:42

the rug was pulled out from under you. Everything

18:44

that was true wasn't true anymore. And you

18:46

don't know where to fight, You don't

18:48

know who to yell at, you don't know who to say

18:51

this is not right. But I missed

18:53

Larry horribly because

18:56

I was so used to sleep

18:59

and with him and holding him,

19:01

and you know that person I love

19:03

is not there to even touch, and

19:07

you go day to day and

19:09

there's this emptiness, there's

19:11

a hole in your life. You've spent

19:14

all these years with that person, and

19:17

all of a sudden you're alone that

19:19

person. You know he's across

19:21

town and you're

19:24

not a widow, and he's not

19:26

a widower, and you just can't reach across

19:29

the miles and touch him. For

19:31

me, at the time, I thought

19:33

it was a process of slowly going mad.

19:36

What I ended up doing just really is is a

19:38

way to stay sane. More than anything else

19:41

was. I started writing letters to the Governor of Tennessee,

19:45

basically saying give us a

19:47

chance. I wrote him almost every

19:49

day, wrote him like about a hundred and fifty letters.

19:52

Here's Larry reading one of his letters to the then

19:55

governor of Tennessee. This

19:58

dear Governor, has him. This is my seventy one

20:01

letter to you. This

20:03

is what I wrote. When

20:06

does one man matter to another? When

20:09

the ears hear the cries, and I see

20:11

the tears and hearts, know that mercy and compassion

20:13

are real choices. More

20:16

than dollars and cents more than realism,

20:18

not real when

20:21

his sickness and death not the sentence of the poor.

20:23

When its care what we do for other

20:25

people, and not doled out in importans to make

20:27

sure it is not stolen. When

20:31

it's the health of our neighbors a measure of the health

20:33

of our hearts and not a threat to the health of our

20:35

wallets. When

20:38

will law become the instrument of justice and

20:40

not the chains to protect the poor from opportunity.

20:44

How can we protect the health of our community

20:47

when health is not available to all? When

20:50

will freedom not be a weapon against the poor,

20:52

but the path to a kinder and better life

20:54

for all? When

20:58

until tomorrow you're truly layer a drain.

21:03

Larry has never received a response. As

21:06

Linda and Larry try to navigate their new situation,

21:08

Linda's doctor told her she needed a medical caretaker

21:12

she was following all the time from the seizures. Larry

21:15

thought this could be the way that they could finally be back

21:18

together. He went to

21:20

Social Security and I said, can I

21:22

be my wife's medical caretaker? And

21:25

Social Security looked at me and they said, we

21:27

would look upon that as fraud. We would look

21:29

upon that as you guys just trying

21:32

to get around the rules and live together.

21:35

I think at one point we said, well, what if we got

21:37

a divorce, could we live

21:39

together then? And they said no, we would

21:41

look upon that as fraud too, because

21:44

of your prior relationship. We would look up

21:46

on that is a way for you trying to avoid

21:48

the law. So

21:50

instead of Larry being able to care for Linda, his

21:53

wife, his love, he

21:55

had to stay away. They

21:58

now live about a forty five minute drive away from

22:00

each other. Sometimes

22:03

it's not a big deal, but put a

22:05

lot of miles on the car. I

22:08

do a lot of drive, and I probably live as much in my car

22:10

as I do any place else. And sometimes

22:13

the gas is just not there. It's just

22:15

simply not there, and I

22:17

have to call and say, hey, Linda, I can't come,

22:19

Which of all the things that I hate in the entire

22:22

world, that is the single thing

22:24

that I hate in the entire world, is

22:27

to call and say, hey, I don't have the gas

22:29

to get there. I've had times before

22:31

where she's been in the hospital with crisis

22:33

is with calls and things like

22:36

that, and I haven't been able to get there. I'm

22:39

glad, I'm here today. You guys gave

22:41

me a good excuse to be here today. So

22:44

uh, but you

22:46

do the best you can, you know, and

22:49

you try to be kind to yourself, and you try to know

22:51

that sometimes your best doesn't amount too

22:53

much, but it's still the best

22:55

you can do. When we are together,

22:58

it's basically rush rush, USh,

23:00

or car time, which

23:02

is stressful because right now

23:04

the car didn't even have air conditioning

23:07

and it's so hot, so

23:09

we're looking for comfortable places

23:11

to be together in our brief time. But

23:15

I just try to be thankful for our

23:17

time we have, and very thankful

23:19

for life and knowing that this

23:22

is more a molding and

23:24

a preparation for something bigger

23:27

and better. I spend

23:30

I don't know fift of what I

23:32

have in gas money. We put

23:34

on incredible amount of miles

23:36

on the car, just going back and forth

23:39

and trying to see that she gets to where she needs to

23:41

get and things like that. The

23:43

question Larry and Linda get a lot is why

23:46

don't you just move? Why don't

23:48

you just get the hell out of Tennessee. It's

23:50

a good option, right, well,

23:52

it's also a pretty expensive option. You

23:55

know, this is not a friendly state to us. This

23:58

is a hard, dangerous date.

24:00

We want to move out of Tennessee. I have

24:02

friends in Colorado who have said move

24:05

here will help. I've had friends

24:07

in Ohio that I've said move here will help. I've

24:09

had friends in Pennsylvania that said move here

24:11

will help. But still,

24:13

that's like even if you if

24:16

you figured conservatively that's

24:18

two or three thousand dollars to move, it

24:21

might as well be two or three million dollars

24:23

to move. You know, I don't

24:26

know how to do that. Uh

24:28

you know. So in

24:31

a very profound way, we're

24:34

fighting for life right now. Larry

24:39

and Linda missed the small things, the

24:41

little things a husband and wife often take for

24:43

granted, sharing

24:46

things music. I

24:48

sent a lot of concerts to her. I

24:51

I do things on Facebook where I will say,

24:54

excuse me, but this is a concert for Linda.

24:56

It's three or four years ago. On her birthday, I

24:59

told her that she was still twenty nine years old,

25:02

and I sent her twenty nine

25:04

songs, Sharing jokes,

25:06

sharing stories. A

25:10

lot of it is is sharing

25:12

time, is looking at saying you

25:14

know, when you want to tell somebody something. Linda

25:18

is my best friend, and

25:21

I miss having a best friend. I've

25:24

got to say that Larry

25:27

is always making me laugh, and

25:31

I never really laughed until

25:34

after the surgery because I was so

25:36

sedated and having

25:38

so many seizures. And I really

25:41

believe that laughter is good

25:43

medicine. It truly is. And

25:45

we did feel good together,

25:48

and it feels very

25:51

empty, and sometimes we

25:54

do feel bad when we are

25:56

a part and I

25:58

missed I missed that terrible. I miss

26:00

it that when I feel bad, I

26:02

cannot hug him.

26:30

Larry and Linda Dreane are the unfortunate victims

26:32

of politics. It doesn't matter

26:34

which side of the ALLU sit on. We've

26:37

all loved someone and wanted to do whatever we

26:39

could to keep that person healthy and safe. Larry

26:43

and Linda can't do that. We're

26:47

ordinary people. We

26:49

don't break the law, we don't get arrested.

26:52

She doesn't abuse me. I don't want abuse her. We're

26:55

basically decent people. We're

26:57

just simply ordinary people caught

26:59

an extra ordinary circumstances. We're

27:02

not the smartest people in the world. We're

27:04

not the bravest people in the world. We're

27:06

not the best people in the world. We're not the most

27:08

talented people in the world. We're just

27:11

simply ordinary people,

27:14

and we've done our

27:16

part and we deserve a

27:18

fair chance. This

27:45

episode was hosted and reported by Joe Piazza,

27:48

with special thanks to Linda and Larry Draine,

27:50

as well as Gordon Bonniman in the Tennessee

27:52

Justice Center. It was produced and edited

27:54

by Ramsey Unt, with mixing by Tristan McNeil.

27:57

The executive producers are Joe Piazza, Tyler

28:00

Clang, and Julie Douglas. Theme

28:02

song and music by Tristan McNeil. For

28:04

comments suggestions are to be part of the show, give

28:06

us a call at four zero four three.

28:11

That's four zero four seven

28:15

three, or send us an email at

28:17

Joe at Committed podcast dot com.

28:19

That's j O at

28:21

Committed podcast dot com. You can

28:23

grab a copy of Joe's book How to Be Married

28:26

on Amazon or wherever books are sold. Committed

28:28

as a production of iHeart Radio and produced in our

28:30

studios located in Atlanta, Georgia. For

28:33

more podcasts from my Heart Radio, visit the

28:35

I Heart Radio app, Apple Podcasts,

28:37

or wherever you listen to your favorite shows.