Latest / Tom's Hirschsprung's Podcast / Episode 49 - With Lynn Wolfson

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Episode 49 - With Lynn Wolfson · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshbrung's Podcast, where I provide
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Speaker 1: a look into the remarkable experiences of the most inspiring
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Speaker 1: people around Hirshbrunk's disease and sports. Hello and welcome to
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Speaker 1: episode forty nine of Tom's Hirshbrun's Podcast. I have a
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Speaker 1: very special guest with me today and we are going
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Speaker 1: to talk about all manner of very exciting and very
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Speaker 1: high profile awards and accolades and stories. I'm delighted to
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Speaker 1: welcome Lynn Wolfson to the podcast.
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Speaker 2: Lynn, welcome, Thank you, thank you for having me. It's
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Speaker 2: a pleasure to be here.
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Speaker 1: Not at all. Thank you so much for coming on.
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Speaker 1: And we were just speaking a little bit off air
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Speaker 1: about so many things that you have achieved, that your
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Speaker 1: daughters have achieved, that you've you've gone on to do,
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Speaker 1: in relation to hirshbrungs, in relation to advocacy, ostomes, so
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Speaker 1: so many things that I'm delighted that we'll be able
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Speaker 1: to get into. But I would like to start, if
1:33
Speaker 1: I may, just from the very beginning, and you were
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Speaker 1: born with hirshbrums. Originally, I know you said you were
1:42
Speaker 1: diagnosed with short segment but you're you're not too sure
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Speaker 1: that it was your segment her Hirshbruns. Would you like
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Speaker 1: to talk a little bit about that.
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Speaker 2: Sure. I was born in nineteen fifty nine, and at
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Speaker 2: that time they didn't believe Herstrung's. They thought, like Persprungs
2:01
Speaker 2: was only in boys or Down syndrome children. So I
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Speaker 2: was not diagnosed until nineteen sixty three, until banteen sixty three,
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Speaker 2: so it took them a long time before it was
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Speaker 2: actually diagnosed. They told my parents that they liked party
2:18
Speaker 2: training skills, that I was holding my stool, that it
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Speaker 2: was psychological, they like disciplinary skills. They used all different
2:26
Speaker 2: types of excuses for the reason why I could in jetfacate.
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Speaker 1: Wow. And then when we're talking about nineteen fifty nine
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Speaker 1: here a completely different time. But that's the But I
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Speaker 1: think the most amazing thing that I was researching in
2:43
Speaker 1: the fact that it was only boys, or they believed
2:45
Speaker 1: it to be only boys or people with Down syndrome.
2:48
Speaker 1: I mean, thankfully nowadays, you know, I've had so many
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Speaker 1: wonderful female guests participants in the podcast that we now
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Speaker 1: know that it's that it can affect It can affect
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Speaker 1: anybody and everybody. But I did they ever really get
3:07
Speaker 1: to the bottom as to why I know there is
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Speaker 1: a link between down syndrome and hirshbrums. I was seeing
3:14
Speaker 1: with many medical studies. But did they ever sort of
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Speaker 1: give you a reason why later in life as to
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Speaker 1: why they thought that you couldn't have possibly had hirshbrums.
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Speaker 2: They just were convinced. It was that, we're convinced it
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Speaker 2: was that I didn't have that I didn't have symptoms
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Speaker 2: of downs or and I wasn't I wasn't male. And
3:34
Speaker 2: as a matter of fact, when I even had pot
3:37
Speaker 2: The story is kind of interesting because they did the
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Speaker 2: full record. I had the full rectoral biapsy done at
3:44
Speaker 2: Boston Children's Hospital in August of nineteen sixty three. They
3:48
Speaker 2: did not were not did not give me the result.
3:51
Speaker 2: I was admitted, I believe, for two nights. I was
3:54
Speaker 2: admitted the first night for prep. They did this, They
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Speaker 2: did the surgery, the full rector think this byiopsy the
4:00
Speaker 2: second the second day. It was more of a big
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Speaker 2: deal thing back then. Simultaneously JFK actually was president at
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Speaker 2: that time, and Jacqueline Kennedy gave birth that day that
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Speaker 2: I had the biopsy. In the neighboring hospital, and she
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Speaker 2: gave birth to Patrick Kennedy, who was not born well.
4:23
Speaker 2: He was moved to the room next door to me,
4:26
Speaker 2: and we had the same doctor. So my doctor wanted
4:30
Speaker 2: to get rid of all his patients because he needed
4:32
Speaker 2: to pay attention to all the children, I mean that
4:35
Speaker 2: to the President's child, and he wanted to get rid
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Speaker 2: of his other patients because the president came down and
4:41
Speaker 2: actually my grandparents were in the elevator with JFK, and
4:46
Speaker 2: JFK actually came to visit me, and I hear that
4:48
Speaker 2: I was not nice to him because she was a
4:50
Speaker 2: man in the suit and I was four, and as
4:52
Speaker 2: far as I was concerned, he was going to stick
4:54
Speaker 2: his finger, you know where, So.
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Speaker 1: I didn't say.
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Speaker 2: Anyway. I was discharged before he got before the physician
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Speaker 2: got the results back. He got the results back the
5:11
Speaker 2: following day, but we lived in New Jersey, so we
5:15
Speaker 2: went back home. He discharged me, telling my parents they
5:18
Speaker 2: lacked disciplinary and potty training skills. So we went back
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Speaker 2: home and my parents, of course, neither of my parents
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Speaker 2: were college graduates, I mean here. We went to Boston
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Speaker 2: Children's which is Harvard, and my parents were in college graduates,
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Speaker 2: and at this time, if the doctor says something you
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Speaker 2: don't you don't question it during that time, especially not
5:40
Speaker 2: being college graduates. If he said it, that's it, that's it.
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Speaker 2: So I was disciplined so whatever, for not defecating. And
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Speaker 2: this went on for quite a few and I vomited
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Speaker 2: it all the time. My projectile vomited. I had my
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Speaker 2: tonsils out a few months later from the constant projectile vomiting.
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Speaker 2: And I think by the time I was six or
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Speaker 2: seven by sixty six. A few years later, a few
6:09
Speaker 2: years later, we went back and my mother said to him,
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Speaker 2: I've been beating her and she still won't defecate. And
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Speaker 2: he went and found I was severely impacted and looked
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Speaker 2: back at the records and said, oh, she has her sprungs.
6:23
Speaker 2: But I really didn't believe it. So I never wrote
6:25
Speaker 2: the letter and I never made the phone call. I
6:29
Speaker 2: didn't have surgery till then he did the surgery and
6:33
Speaker 2: I sent me home. But he didn't tell my parents
6:37
Speaker 2: that he was not a coorectal surgeon or gastro. He
6:43
Speaker 2: was a cardiologist, and actually doctor Swinson worked for him.
6:47
Speaker 2: But he had such a big ego that he did
6:50
Speaker 2: not want to turn me over to doctor Swinson because
6:53
Speaker 2: he was the chief and he didn't want to turn
6:56
Speaker 2: me over, and as a result, I had an intestinal
6:59
Speaker 2: rough sure from his surgery, and then I had to
7:02
Speaker 2: be rushed back to Boston and I got my first
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Speaker 2: ostrom in nineteen sixty six, which a year later they
7:10
Speaker 2: later closed. And he told my parents I was cured.
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Speaker 1: Ha ha, just just cured of firstbroke.
7:18
Speaker 2: I'n' cured, he told me, wow, yeah, And my parents
7:23
Speaker 2: lost everything because the insurance, the insurance was up. We
7:29
Speaker 2: hit the maximum, so when I went into the hospital,
7:34
Speaker 2: the insurance couldn't pay. My parents didn't have my have money.
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Speaker 2: My mother was twenty one when she had me and
7:40
Speaker 2: my father was twenty three. Neither of them, like I said,
7:42
Speaker 2: were college graduates. And they lost their house. They lost
7:49
Speaker 2: their house. We had to move into low income apartment complex.
7:52
Speaker 2: And they had they had bought a four bedroom house
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Speaker 2: like in fifty eight, I think fifty seven, fifty eight
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Speaker 2: before before I before I was born one, and since
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Speaker 2: they couldn't pay the medical bills and there was no insurance,
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Speaker 2: the insurance was up, so I became a ward and
8:09
Speaker 2: my parents really didn't have a choice consequently, so did
8:13
Speaker 2: not have to ask or tell my parents what they
8:15
Speaker 2: were going to do with me. And they used me
8:18
Speaker 2: for experimentation, and I remember, and they did a lot
8:23
Speaker 2: of very terrible things to me. Wow, he was there.
8:28
Speaker 1: That's that's shocking. That's that's unbelievable as a story.
8:37
Speaker 2: And I had nightmares for forty years until I went
8:42
Speaker 2: back again. I think it was in two thousand and
8:44
Speaker 2: one to two thousand and two, in like forties. And
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Speaker 2: every time I told my mother that she would come
8:50
Speaker 2: in what they did to me. My mother was only
8:52
Speaker 2: allowed to stay with me for four hours a day,
8:54
Speaker 2: so they had twenty hours a day to do what
8:56
Speaker 2: they wanted. And I would tell her what they did,
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Speaker 2: and she would tell me to stop making up stories,
9:02
Speaker 2: which was horrible, and stop imagining things. But I mean,
9:05
Speaker 2: they did such terrible things, like one time they took
9:07
Speaker 2: an electric saw it and saw in my osmeine half
9:09
Speaker 2: of me totally awake, and I screamed and yelled and
9:13
Speaker 2: they and they bullied me for screaming and yelling. They
9:18
Speaker 2: bullied me a lot. But they did a lot of
9:22
Speaker 2: terrible things like tie me to my bed while they
9:24
Speaker 2: were and my mother wasn't there, and bringing me food
9:28
Speaker 2: and not untying me from the bed, and then giving
9:30
Speaker 2: me a hard time for night eating because my hands
9:32
Speaker 2: were tied to my bed. They did a lot of
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Speaker 2: They did a lot of very bad things. And when
9:40
Speaker 2: I told my mother that she would tell me to
9:41
Speaker 2: stop making up stories when I was when I had
9:45
Speaker 2: to go back again in my forties, took me back
9:47
Speaker 2: again as an alumni. I told the doctor a lot
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Speaker 2: of the stories that I had remembered because the nightmares
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Speaker 2: stopped for forty years, and my mother always denied everything
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Speaker 2: that I told her. And of course this doctor was
10:01
Speaker 2: not the same because said doctor I had then was
10:04
Speaker 2: deceased at this point, so it was another doctor in
10:06
Speaker 2: the same position. He went back and looked everything up,
10:12
Speaker 2: and he came back and he said, you're one hundred
10:13
Speaker 2: percent correct. Everything you said is one hundred percent accurate.
10:17
Speaker 2: He says, not at least it accurate. I'm going to
10:19
Speaker 2: send you all of the records so you could read
10:22
Speaker 2: it yourself and you could see it. And I now
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Speaker 2: have all the records, and I see and I could
10:27
Speaker 2: read everything that they did.
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Speaker 1: Was there any kind of, you know, apology or anything
10:38
Speaker 1: that came out to out the hospital. Nothing.
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Speaker 2: My parents didn't have to pay. They were my legal parents.
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Speaker 1: So they could get around that that way.
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Speaker 2: They were my parents. They didn't have to answer or
10:51
Speaker 2: tell my parents anything. That's and the insurance was up.
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Speaker 2: You know, they used all the money.
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Speaker 1: On the insurance. Yeah, so legally handed over responsibility as such.
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Speaker 1: That's that's utterly disguiseful.
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Speaker 2: But the validation into me at age, even though I
11:12
Speaker 2: was like forty two forty three years old, was such
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Speaker 2: a relief. These nightmares after forty years finally stopped.
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Speaker 1: That's good.
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Speaker 2: And the fact that I was able to read and
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Speaker 2: then I know that everything really happened, It actually happened,
11:30
Speaker 2: because you know your mother. You believe your mother. Your
11:33
Speaker 2: mother knows everything.
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Speaker 1: Of course, Yeah, of course, but you knew, you well,
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Speaker 1: you knew what happened. And I guess probably my next
11:44
Speaker 1: question with that, you said that you felt, you know,
11:48
Speaker 1: had those forty years and then fell better. I guess
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Speaker 1: was it sort of some sort of closure that you
11:55
Speaker 1: got from that?
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Speaker 2: Yes, because I was never sure in myself of anything.
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Speaker 1: No, well, of course not if you if you say
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Speaker 1: this happened and somebody says no, it didn't, and then
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Speaker 1: that person is believed. Well, it's you question yourself. You
12:12
Speaker 1: doubt yourself naturally, especially start.
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Speaker 2: Myself on everything I couldn't. I had no grounding, you know.
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Speaker 1: That's that's utterly yeah, reprehensible, really absolutely reprehensible. And thank
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Speaker 1: you again for being so open and sharing that as well.
12:35
Speaker 1: And who you said you had you had all the
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Speaker 1: all the records.
12:39
Speaker 2: Yes, you have all I have all the records. I
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Speaker 2: have everything.
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Speaker 1: Have you read them at all? Or have you sort
12:45
Speaker 1: of just put them to one side.
12:48
Speaker 2: I've read some of them. It's sometimes it's hard to
12:50
Speaker 2: read through it all again, actually, but I've read some
12:54
Speaker 2: of them. But I've had enough validation from the doctor
12:58
Speaker 2: that he told me that I was one hundred percent
13:00
Speaker 2: correct with my mother standing there and my mother's mouth
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Speaker 2: dropping open, and that to me was good enough, and
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Speaker 2: that gave me enough strength to realize that I do
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Speaker 2: remember well.
13:13
Speaker 1: Yeah, yeah, which I guess makes it all the more
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Speaker 1: amazing that you have gone from this appalling treatment too.
13:28
Speaker 1: Going on to talk about some of the things that
13:30
Speaker 1: we were about to talk about, the incredible achievements and
13:35
Speaker 1: accolades that we were talking about off air, that we
13:38
Speaker 1: were that we were mentioning, and I'd like to if
13:42
Speaker 1: I may just talk a little bit about some of
13:44
Speaker 1: some of the accolades that you've that you've received over
13:49
Speaker 1: time and and sort of what they'refore. One of them,
13:53
Speaker 1: you're in the Bower County Hall of Fame, and I
13:56
Speaker 1: know we would we were talking a little bit about that.
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Speaker 1: And you've received well probably close to a dozen letters
14:03
Speaker 1: from various senators, from various people in government, mayors for
14:08
Speaker 1: all of your incredible work. Would you like to talk
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Speaker 1: a little bit about some of the work that you've
14:14
Speaker 1: done which has led to you being in the Hall
14:15
Speaker 1: of Fame?
14:17
Speaker 2: Sure? Okay, So gradually this is what initially started giving
14:24
Speaker 2: me the strength. By this validation, I finally got the
14:30
Speaker 2: strength within myself to become a real person. I never
14:34
Speaker 2: I questioned myself on everything. Yeah. I think the next
14:39
Speaker 2: thing that helped me grow was I got my own
14:42
Speaker 2: service dog, which was a very important aspect. Yes, And
14:47
Speaker 2: the reason why the service dog helped me tremendously not
14:49
Speaker 2: only does my service dog was a he and now
14:52
Speaker 2: it's a she, because people in public started asking me,
14:57
Speaker 2: why do you have a service dog? You look so good,
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Speaker 2: you look fine, Why would you have a service dog,
15:03
Speaker 2: and it got me talking to strangers and I learned
15:06
Speaker 2: to have how to speak briefly, quickly, get to the point,
15:11
Speaker 2: and diplomatically, and it was really good practice and I
15:17
Speaker 2: started to feel proud of myself and good about it.
15:22
Speaker 2: And then it was suggested that I start to go
15:25
Speaker 2: to Ohline to an ostemey support group. And I really
15:29
Speaker 2: didn't feel I needed to since I started you on
15:31
Speaker 2: my first ostemy at sixty six, when I was seven
15:33
Speaker 2: years old, and I really didn't feel like I needed
15:36
Speaker 2: to go to one. But my nurse suggested that I
15:39
Speaker 2: go because other people need help and I knew how to,
15:43
Speaker 2: I knew how to take care of it, and I
15:46
Speaker 2: should go to help them. So I went to this
15:50
Speaker 2: osteme support group. But I really wasn't happy with this
15:53
Speaker 2: specific ostome support group because the leader would get up
15:56
Speaker 2: in front of the group and say, oh, so much pain.
16:02
Speaker 1: That doesn't help anymore. That's really not very helpful.
16:15
Speaker 2: And she would have had these doctors come in and
16:18
Speaker 2: show graphic pictures on how ostomes were made, and it's like,
16:22
Speaker 2: I don't really want to see that either. We did that.
16:25
Speaker 2: It's like constantly watching births, you know, they yeah, yeah,
16:30
Speaker 2: how we were born. I mean, we don't need to
16:32
Speaker 2: see that all. It's fine, Okay, we were born. Done,
16:36
Speaker 2: let's move on. So I decidedn't want to start my
16:41
Speaker 2: own astome group. In the meantime, I ended up going on.
16:47
Speaker 2: So I haven't an ilyostomy. I'm on my eighth ostomy.
16:53
Speaker 2: This is I've had colostomies, I've had iliostomies, and now
16:56
Speaker 2: I have a permanent ily ostomy. I mean, I've gone
16:59
Speaker 2: through so many doctors which I've told me that I'm cured,
17:02
Speaker 2: and I've learned that I am not cured and I
17:07
Speaker 2: will never be cured. There is no cure part of it.
17:14
Speaker 2: This is the next thing that happened. So I went.
17:18
Speaker 2: I was told that I needed TPN total parental nutrition,
17:21
Speaker 2: which he's fed through the heart, and I was really
17:25
Speaker 2: I never heard of it. I never heard of it.
17:27
Speaker 2: I didn't know anybody that was on it. I didn't
17:29
Speaker 2: know anything about it. I was really very upset about it,
17:33
Speaker 2: and so I started I started calling all around to
17:39
Speaker 2: find out some information, and I found out there was
17:42
Speaker 2: this Hirst Sprung Csease Society in Lexington, Massachusetts, and they
17:47
Speaker 2: invited me to come to a conference. Well, I never
17:49
Speaker 2: knew that there was patient conferences or anything of that nature.
17:53
Speaker 2: So I went up to the conference, and I brought
17:55
Speaker 2: one of my daughters with me. And actually the conference
17:58
Speaker 2: really wasn't meant for patients, was doctors. There was maybe
18:01
Speaker 2: ten patients there, okay, and there is they have like
18:06
Speaker 2: a vendor fair where they have the pharmaceutical companies come
18:11
Speaker 2: come around. You know, it's set up in a room
18:13
Speaker 2: and you can go around to the pharmaceutical companies. And
18:16
Speaker 2: one of the pharmaceutical companies was a TPN supplier and
18:22
Speaker 2: the woman that was representing them her son had Hirsprung's
18:27
Speaker 2: disease and was on TPN and had an astthomy. So
18:32
Speaker 2: her name was Anne. So I started talking to Anne,
18:35
Speaker 2: and I was more interested in Anne. The conference was
18:38
Speaker 2: really way above my head. It was doctor. It was
18:40
Speaker 2: a doctor conference. It was way above my head. But
18:44
Speaker 2: Anne was very nice. And what happened was when it
18:47
Speaker 2: came to lunchtime, the the director of this conference said,
18:52
Speaker 2: since we only have ten patients and the one hundred doctors,
18:55
Speaker 2: what we'd like is for every patient to sit at
18:58
Speaker 2: one table to tell your your uh, talk about what
19:03
Speaker 2: your diagnosis is and then all tend to and then
19:06
Speaker 2: I want each doctor to go around and tell them
19:08
Speaker 2: their opinion.
19:10
Speaker 1: Okay, interesting, which.
19:12
Speaker 2: Was the greatest I mean, they were massed general doctors
19:15
Speaker 2: and it's just.
19:16
Speaker 1: Right, yeah, fantastic, absolutely brilliant.
19:20
Speaker 2: Okay. So I sat at the table and they all
19:23
Speaker 2: decided that I should be fed entrally, which means through
19:27
Speaker 2: my intestines or through my stomach or through my intestines,
19:31
Speaker 2: but not intravenously. That's really a last a last resort.
19:34
Speaker 2: It was great. It was great information. Okay. And Anne
19:39
Speaker 2: and I, you know, and was the vendor, exchanged information
19:44
Speaker 2: and then she we became Facebook friends because I told
19:48
Speaker 2: you she had her son. Became Facebook friends, and she
19:52
Speaker 2: invited me to come to the Digestive Disease National Coalition
19:56
Speaker 2: at Washington, d C. So I went up and she
20:01
Speaker 2: introduced me to the Director of Digestive Diseases for the
20:05
Speaker 2: National Will Institute of Health. Thought wow, and only one
20:09
Speaker 2: hundred and twenty five people from acrastination are invited, so
20:13
Speaker 2: this is a tremendous honor. And he spoke about hirst
20:17
Speaker 2: Sprung's disease, and for the first time I heard there
20:21
Speaker 2: is no cure, and I felt like I wanted to
20:24
Speaker 2: kiss him happy to hear that, because my doctors kept
20:29
Speaker 2: telling me I was cured that HERT Sprungs is a
20:32
Speaker 2: pediacric disease. I was operated on by the very best
20:37
Speaker 2: and I'm a big girl now and I was doing
20:42
Speaker 2: and if it's such a relief to hear this, I
20:47
Speaker 2: gained so much power. So I decided when I went back,
20:51
Speaker 2: I am going to create a group for ostomates and
20:56
Speaker 2: people that are I'm feeding. So then anybody that has
20:59
Speaker 2: an US of ME or is on medical feeds meaning
21:05
Speaker 2: TPN through the heart or intestinely through the stomach or
21:09
Speaker 2: through the intestines, we would all be together because there's
21:12
Speaker 2: too few people to have them separate, and Hirst Bruns
21:16
Speaker 2: is way too few to have a in person support group.
21:20
Speaker 2: So I figured out in the USA there's seven hundred
21:23
Speaker 2: and fifteen thousand to one million people with ostromes. Were there.
21:28
Speaker 2: There's about three hundred and fifty million people in the USA,
21:31
Speaker 2: of course the whole USA, and there's about forty thousand
21:35
Speaker 2: people on feeding, which is very which is really very few.
21:40
Speaker 2: But I live by Cleveland Clinic, so there there's a
21:44
Speaker 2: lot more people around around here. With it. You know,
21:47
Speaker 2: people move here if they need to be on it
21:49
Speaker 2: to be closer to the hospital. So I decided to
21:54
Speaker 2: form I decided to form a organ a a support
22:00
Speaker 2: group for people with ostemes and were on tube or
22:04
Speaker 2: or parental feeding. So I formed this support group, which
22:08
Speaker 2: is the only one in the USA, and we met
22:11
Speaker 2: in person at a pizza restaurant. Some of us watched
22:15
Speaker 2: everybody else to eat like me. Yeah, but it got
22:21
Speaker 2: the astomis to come and it was the camaraderie. And
22:25
Speaker 2: many times people would be complaining that some of the
22:27
Speaker 2: supplies that they received they didn't like, or they didn't
22:29
Speaker 2: fit or whatever. So I'd say, well, if you don't
22:32
Speaker 2: like or And then sometimes people call me that somebody
22:35
Speaker 2: was deceased, what can they do? So I said, well,
22:38
Speaker 2: just bring them to the meeting and put them on
22:40
Speaker 2: the table, and I'd say, anyone that wants to try
22:42
Speaker 2: something to take from the take from the table. And
22:46
Speaker 2: I got an OSTHMEI supply company to pay for the
22:49
Speaker 2: pizza and the salad and the soda. So that got
22:52
Speaker 2: people to come. And I let the Osthme supply company
22:55
Speaker 2: come and they could bring their order takers and get
22:58
Speaker 2: people to order from them, and most people didn't care
23:01
Speaker 2: who sent their sass three supplies. As long as they
23:03
Speaker 2: got what they wanted when they needed the that's all
23:05
Speaker 2: they care about. And they took their insurance, so they
23:08
Speaker 2: really didn't care. They cared more that they got a
23:11
Speaker 2: free dinner between people salad and soda. So we did
23:15
Speaker 2: that from twenty eighteen till the beginning of twenty twenty
23:19
Speaker 2: and then we all know what happened covid okay, So
23:24
Speaker 2: then we had to go virtual it. We had a
23:26
Speaker 2: couple of months with nothing because we had it. We
23:28
Speaker 2: didn't really know what zoom was at that time, and
23:32
Speaker 2: then I started zoom. Well, then I started going virtual
23:36
Speaker 2: and my name went around the world, my virtual meetings,
23:42
Speaker 2: It went all over the world. People started hopping on
23:44
Speaker 2: from the Caribbean, from Hawaii, from Canada, from Chile, from
23:48
Speaker 2: Central America, from Australia, from India, from Africa. That was
23:54
Speaker 2: all over the place. People were waking up in the
23:56
Speaker 2: middle of the night, in the morning, early in the
23:58
Speaker 2: morning to come on to my They come on to
24:01
Speaker 2: my my virtual meeting. I was but I was also
24:05
Speaker 2: able to get speakers from all all over the world
24:08
Speaker 2: and I was able to get famous people to come
24:10
Speaker 2: on because everybody was sitting at home. Yeah, so I
24:13
Speaker 2: got great speakers. I got a San Diego charge of
24:16
Speaker 2: football player was able to come on. I got big
24:19
Speaker 2: authors to come on because nobody was doing it, he said,
24:23
Speaker 2: So people were happy to come on. I got people
24:27
Speaker 2: from remote areas of the USA to come on. So
24:30
Speaker 2: I got a big I had a big attendance, and
24:35
Speaker 2: but people were dying, of course, and especially a lot
24:38
Speaker 2: of people that were on feeding. I'm talking, but I
24:40
Speaker 2: told about the feeding is the entrol or the parental
24:43
Speaker 2: feeding with ostomies, and then calling the UOAA, the United
24:47
Speaker 2: Osomey Associations of America, which is in Maine, which is
24:50
Speaker 2: very far away from me. I guess it's about two
24:54
Speaker 2: thousand miles away from me, very very far away.
24:56
Speaker 1: Yes, that's quite fun.
24:58
Speaker 2: Holy Foundation, which it is also very farm Maybe it's
25:01
Speaker 2: eighteen hundred miles away. It's in Albany, New York, Albany
25:04
Speaker 2: Medical Center, which is the national organization for a feeding.
25:09
Speaker 2: So if they were in South Florida, they would say
25:12
Speaker 2: Colin Wolfson. So during COVID, I'd say, Okay, just tell
25:16
Speaker 2: me when you're coming drop it off outside of my
25:18
Speaker 2: garage store, and then I'll go bring it in, because
25:21
Speaker 2: remember you didn't want to see anybody during COVID, so
25:25
Speaker 2: I would They would drop it out outside my when
25:27
Speaker 2: someone was to see State bring everything, drop it outside
25:30
Speaker 2: my garage store. Then I'd bring it in and I'd
25:32
Speaker 2: fill up my bedroom. My bedroom got all the one
25:35
Speaker 2: of the bedrooms got all filled up. I couldn't even
25:37
Speaker 2: walk into the bedroom and got no filled same time,
25:43
Speaker 2: I was getting calls not only national calls, but call
25:47
Speaker 2: from the UAA and the Albany Medical Center, but also
25:51
Speaker 2: locally of people that needed supplies and weren't getting any
25:55
Speaker 2: because the ups and the mailing was all getting all
25:57
Speaker 2: screwed up because of COVID as well. So I was
26:01
Speaker 2: running around and delivering stuff to whoever or whoever needed
26:07
Speaker 2: whoever needed things. Simultaneously, I started my own little personal project.
26:13
Speaker 2: We inherited a lot of pictures from both sets of parents,
26:16
Speaker 2: my husband's and my parents, and we went through the
26:19
Speaker 2: boxes and I made collages you have to put on
26:21
Speaker 2: the walls of the family, something that never usually gets done,
26:24
Speaker 2: but COVID was a perfect time, and I brought it
26:26
Speaker 2: to the framer to put it together, and i'd started.
26:30
Speaker 2: The bedroom got so filled up. I put the stuff
26:33
Speaker 2: in the car. Now I was driving around with it
26:36
Speaker 2: in the car because there's no room or room in
26:38
Speaker 2: that house. And when she brought the frames out, she says,
26:41
Speaker 2: it's no room in the car. And she said, what's
26:44
Speaker 2: all is the I'm in the car and I said, oh,
26:46
Speaker 2: it's ostomy supplies. I have no place where it. She says, well,
26:50
Speaker 2: next door the butcher. Her father is in Colombia and
26:55
Speaker 2: he has he needs ostomy supplies. Go get the butcher.
26:59
Speaker 2: So I went to the butcher. She took them a latch.
27:01
Speaker 2: She sent them to Colombia, and she said that she
27:05
Speaker 2: will take all my as to be supplies. I brought
27:07
Speaker 2: everything over from the house. I brought it to the butcher.
27:10
Speaker 2: She sent them to Colombia, and then she says, okay,
27:12
Speaker 2: it's enough, it's enough. He's he's got plenty. Is that
27:17
Speaker 2: store them for me? Can you store them?
27:19
Speaker 1: Yeah?
27:19
Speaker 2: Yeah? Yeah. Well, when someone called that they needed I
27:21
Speaker 2: went back. There was nothing there. I needed something called
27:24
Speaker 2: up that as to me. Supply company said, hey, you
27:26
Speaker 2: know you're not paying for pizza and soda anymore? How
27:29
Speaker 2: about the storage unit. So they said, okay, So I
27:34
Speaker 2: got a storage unit. And since then the storage unit
27:39
Speaker 2: has doubled inside size. I've sent millions of dollars of
27:43
Speaker 2: supplies to Venezuela, Colombia, Panama, Honduras, Jamaica, Ukraine, the Bahamas,
27:53
Speaker 2: and even all around here. I supply the medical shelters
27:55
Speaker 2: and Dade, Broward, Palm Beach Counties. I send it out
27:59
Speaker 2: to the jails, to the jails, I send out to
28:02
Speaker 2: anybody that calls me. I send out supplies, or they
28:05
Speaker 2: can come, they can pick what they want. I don't
28:07
Speaker 2: take a penny. Wow, okay. And people donate to me
28:12
Speaker 2: and I just put it. I just put it in
28:13
Speaker 2: the supply unit. Or if they can come, they can
28:16
Speaker 2: come and they can pick whatever they want. To open
28:18
Speaker 2: the doors. They take whatever you want. And I also
28:21
Speaker 2: get formula, and to a formula, who are the malinlourished
28:24
Speaker 2: people that don't have teeth or swallowing issues or need
28:28
Speaker 2: to be fed through the tube. So consequently I got
28:33
Speaker 2: selected to be inducted into the Brower County Senior Hall
28:37
Speaker 2: of Fame. Sorry, such a long answer to a short question.
28:39
Speaker 1: No, No, that's a fantastic story, Okay.
28:43
Speaker 2: So I got selected to be inducted into the Brower
28:45
Speaker 2: County Senior Hall of Fame by the Mayor of Brower
28:48
Speaker 2: County and the mayor of Fort Lauderdam, and I got
28:51
Speaker 2: all of these letters, and I also got my name
28:56
Speaker 2: got called out in the US House of Representatives. So
28:59
Speaker 2: therefore my name is in the Congressional minutes as a
29:03
Speaker 2: result of all my anoicacy.
29:07
Speaker 1: Absolutely brilliant, and thank you so much for telling that
29:09
Speaker 1: story as well, because one of the things I love
29:12
Speaker 1: hearing is the background as to why things happen or
29:17
Speaker 1: why you know, why did you get the people may
29:20
Speaker 1: have seen that you are in the Brown County Hall
29:23
Speaker 1: of Fame and not fully understand the reason as to why.
29:29
Speaker 1: So I do love hearing the stories and the reasons
29:33
Speaker 1: why people get get what they get. I guess right,
29:38
Speaker 1: which is absolutely fantastic. And congratulations by the way, that
29:44
Speaker 1: there is an awful lot I know we've we talked
29:46
Speaker 1: about when I was doing my research for this podcast.
29:51
Speaker 1: If you just type your name into Google, there's so
29:53
Speaker 1: many things, fantastic things that come up. One in betwarticular
30:00
Speaker 1: that really stood out was a a piece on the
30:04
Speaker 1: Cleveland News as well where you talked about your Hirshbrungs
30:11
Speaker 1: for I believe it was I think it said their
30:14
Speaker 1: health cast health caste show, which I thought was absolutely fantastic,
30:18
Speaker 1: and you you explain Hirshbrungs really really well and your
30:24
Speaker 1: your particular condition of that as well, which is which
30:26
Speaker 1: is fantastic. In terms of the Ostome and Feeding Support Group,
30:36
Speaker 1: you said that you weren't particularly sort of enamored with
30:39
Speaker 1: wanting to go or or do something, but then you're
30:43
Speaker 1: now you're now president of the Astome and Feeding Supply
30:47
Speaker 1: Bank as well. How did that sort of manifest itself?
30:54
Speaker 2: Oh, I originally didn't want to go to the to
30:56
Speaker 2: that group because a I didn't like the negativity explaining before.
31:04
Speaker 2: But then I decided to create a group that was
31:08
Speaker 2: combined Theme and feeding. So the name of the support
31:12
Speaker 2: group is the South is South Florida asthmy Tube Feeding
31:15
Speaker 2: slash HB and Support Group. So that has a different
31:19
Speaker 2: name than the US And the reason why they have
31:22
Speaker 2: different names is because LNS Medical Supply Theme which is
31:27
Speaker 2: paying the rent. Since they paid the rent, they really
31:32
Speaker 2: own the unit, got it. Yeah, So since they paid that,
31:37
Speaker 2: they could take the tax, you know, they could take
31:39
Speaker 2: the tax right or or whatever they owned the they
31:42
Speaker 2: owned the unit, and I don't deal with money at all,
31:45
Speaker 2: And any donations that are made good, the checks are
31:49
Speaker 2: made out to LNS Medical and they put it into
31:51
Speaker 2: a postage account for me, so I can nailt all
31:54
Speaker 2: over the count all over the country.
31:57
Speaker 1: Absolutely fantastic. And there was another very important point that
32:02
Speaker 1: I wanted to talk to as well, and again it
32:05
Speaker 1: has more sort of law and government rehetric around it,
32:11
Speaker 1: and that's something called Lin's Law, which is which is
32:17
Speaker 1: well named after you, and it is very much around
32:21
Speaker 1: sort of ostomy supplies ostome facilities, not supplies facilities in toilets.
32:30
Speaker 1: Would you like to talk a little bit about Lin's Law?
32:34
Speaker 2: Sure? So Lens Law is making handicap rustum stalls more
32:38
Speaker 2: accessible to people with digestive diseases. It requires that handicap
32:44
Speaker 2: stalls have a shelf at seeded level, at toilet seated
32:47
Speaker 2: level to put ostomy supplies and catheters for you for
32:52
Speaker 2: your ownation. So currently there is not there are not
32:58
Speaker 2: shelves at seated level, very difficult to cathorize or put
33:02
Speaker 2: us tomy supplies to work in a handicap ERUs in
33:06
Speaker 2: a public handacap press from stall. Also at a hook,
33:10
Speaker 2: buy the toilet to hang a feeding backpack. Also to
33:14
Speaker 2: have a sync with paper towels. Ustomes can be very
33:18
Speaker 2: messy and we need to clean up after ourselves. We
33:21
Speaker 2: need to pay per towels. For cathorizing, you need to
33:23
Speaker 2: pull down your pants, then wash your hands, then catharize.
33:27
Speaker 2: So I would like to make that requirement. I also
33:30
Speaker 2: would like to have swings disposal box in all public
33:35
Speaker 2: ressrooms so people do not go their syringes in the
33:38
Speaker 2: regular garbage cans or out in the parking lots.
33:42
Speaker 1: Yeah, most definitely. And in terms of making that law,
33:47
Speaker 1: obviously it's it's very important to you and very important
33:51
Speaker 1: to a lot of people out there. What kind of
33:54
Speaker 1: major thing, right I'm going to I'm going to do this.
33:58
Speaker 1: I'm going to take this on myself.
34:02
Speaker 2: When I went to Japan, I traveled all over the world,
34:05
Speaker 2: and Japan has gone all the way. They actually have
34:10
Speaker 2: ostomy dedicated toilets, toilets which are only for ostomates, and
34:17
Speaker 2: they look like laundry room sinks but are porcelain or uh,
34:25
Speaker 2: porcelain laundry room sink, so smoother, so smoother and you
34:29
Speaker 2: could flush them. And so you just stand up a
34:36
Speaker 2: waste wise and you could put the bag over, empty
34:38
Speaker 2: it into the sink, and then you could turn on
34:41
Speaker 2: the sink and there's a box to put your dirty
34:45
Speaker 2: to put the dirty bag in, and you can wash
34:47
Speaker 2: your hands and wash out your bag. So they really
34:51
Speaker 2: went all the way. I would really like that, but
34:55
Speaker 2: that's money, money, money, money, money, So I was trying
34:58
Speaker 2: to make it something that is something that was feasible
35:02
Speaker 2: and that could have it. And the shelf really doesn't
35:05
Speaker 2: cost all that much money, and neither does a hook.
35:10
Speaker 2: I also found in Japan what they have, So some
35:14
Speaker 2: places complain that to put in they'd have to put
35:16
Speaker 2: an additional plumbing into a handicapped rushroom stool to add
35:20
Speaker 2: a sink. In Japan they have something really interesting. They
35:25
Speaker 2: have a toilet and above the water tank they have
35:28
Speaker 2: a sink. So if you sit backwards on the toilet,
35:33
Speaker 2: you can actually wash your hands, use the water, sit
35:37
Speaker 2: backwards on it and use the water, and the water
35:41
Speaker 2: is drained and used as a toilet water.
35:46
Speaker 1: That's pretty clever. I like that.
35:47
Speaker 2: You you don't have to have another opening for a
35:51
Speaker 2: sick no.
35:53
Speaker 1: That's very very clever. I like, I think that's fantastic.
35:57
Speaker 2: And that really I mean, yes, that would probably cost
36:01
Speaker 2: about six hundred six seven hundred dollars to buy a
36:03
Speaker 2: new toilet, but I'm talking about public restroom. To buy
36:06
Speaker 2: a toilet like that and not have to create a
36:08
Speaker 2: new opening and new plumbing or whatever, that's worth it.
36:12
Speaker 1: Yeah. Absolutely.
36:13
Speaker 2: And because Japan everything is really well, London everything is
36:16
Speaker 2: really small too, but Japan is even Totio is really
36:20
Speaker 2: really small. Yes, yes, smaller than in London.
36:24
Speaker 1: Yeah, very much, so, very much. So that's that's fantastic.
36:28
Speaker 1: And and again congratulations on getting Lind's Law through. How
36:33
Speaker 1: long has Lynn's Law been around?
36:38
Speaker 2: It's not a law yet, you know. I just make
36:39
Speaker 2: that name up and you could you go to l
36:42
Speaker 2: Y and then as law dot org. Yeah, yeah, and
36:46
Speaker 2: look at and look it up and you can see
36:47
Speaker 2: my story. I'm not so great with the computer. I
36:51
Speaker 2: don't update it that much. People could also email me
36:56
Speaker 2: if they want to, and it's Ellie Wolf eighteen fifteen
37:02
Speaker 2: at aol dot com or at gmail dot com if
37:07
Speaker 2: you want to ask me anything.
37:08
Speaker 1: That's fine, fantastic.
37:14
Speaker 2: So I've been doing it for about ten years. Yeah,
37:16
Speaker 2: I just talk about it a lot, and I talk
37:18
Speaker 2: about it in our capital. I talk about it and
37:23
Speaker 2: Weston has made it a mandate in all public restrooms,
37:28
Speaker 2: not private, and all public antingcap pressroom stalls like the library,
37:33
Speaker 2: the pool, everything that's the public buildings all have to
37:38
Speaker 2: have Lind's Law in it. Fantastic And the mayor Brower
37:44
Speaker 2: County is working on it for the airport, the Fort
37:47
Speaker 2: Lauderdale Airport.
37:50
Speaker 1: Ah, fantastic. That would be really really handy, very very handy. Indeed,
37:54
Speaker 1: And as we were talking about this as well, and
37:58
Speaker 1: government bills and and a lot of your a lot
38:01
Speaker 1: of things that you do in terms of public speaking.
38:04
Speaker 1: Obviously for that you will have to be incredibly well educated,
38:08
Speaker 1: which you are. I mean, we were talking about just
38:12
Speaker 1: the amount of degrees that you have and the amount
38:14
Speaker 1: of accolades you have, and one of the main things
38:18
Speaker 1: I'd like to promote on this podcast is that even
38:23
Speaker 1: though you have you know, somebody may have Hirshmungs disease,
38:25
Speaker 1: it doesn't stop them from achieving so much. Would you
38:30
Speaker 1: like to talk a little bit about the degrees that
38:33
Speaker 1: you have and the accolades.
38:37
Speaker 2: Okay, so I have a bachelor's in marketing from University
38:39
Speaker 2: of Maryland, and then I have a master's in Business
38:42
Speaker 2: Administration with the postmasters and computer science, but that's from
38:46
Speaker 2: eighty seven, which.
38:47
Speaker 1: Is really different computers to now, so hypad there.
38:53
Speaker 2: Right, And I have an Educational Specialist degree in mathematics
38:57
Speaker 2: education which is on the doctorate. I don't know if
39:01
Speaker 2: they have that degree in England, but it's almost a doctorate.
39:06
Speaker 2: I graduated with a doctoral gown and a mastershood. I
39:09
Speaker 2: didn't do the dissertation. I had to go in for
39:12
Speaker 2: more surgery, and it's for more surgery, a surgery after surgery,
39:15
Speaker 2: after surgery. And I haven't been able to go back
39:18
Speaker 2: to teaching since two thousand and six, and at this
39:22
Speaker 2: point all my work is all voluntary. I don't make
39:25
Speaker 2: any money, but that's.
39:28
Speaker 1: But you are incredibly well educated and also have two
39:33
Speaker 1: daughters that are incredibly well educated as well. Would you
39:37
Speaker 1: like to talk a little bit about them?
39:39
Speaker 2: So I have two daughters. My older daughter is thirty
39:42
Speaker 2: five years old and she is a biomedical engineer and
39:47
Speaker 2: she is a global manager and an inventor and has
39:52
Speaker 2: several patents, and she also has four children. Both my
39:56
Speaker 2: daughters are healthy, and my four grandchildren are healthy. And
40:01
Speaker 2: my younger daughter is also a biomedical engineer and a
40:05
Speaker 2: pediatric and adult neurogastro and geologist who is working on
40:11
Speaker 2: resolving Hirsprung's disease. She has already been named one of
40:15
Speaker 2: the thirty most brainiest people studying the enteric nervous system
40:20
Speaker 2: and she's at University Pennsylvanian Chop. She's the only adult
40:23
Speaker 2: and pediatric neuro gaston drop just in the USA. Currently
40:28
Speaker 2: she's speaking in Thailand and a couple of weeks ago
40:31
Speaker 2: she's speaking in Italy. So her research is calling for
40:35
Speaker 2: a lot of attention.
40:37
Speaker 1: That's absolutely fantastic, And obviously I think I think anybody
40:41
Speaker 1: who listens to this podcast, follows me, follows you, will
40:46
Speaker 1: wish her the absolute best of luck with that in
40:49
Speaker 1: terms of well both of your daughters, but especially researching Hirsprungs.
40:56
Speaker 1: But then, obviously they've taken a lot of inspiration from you.
41:02
Speaker 1: I think we can see we can see that. How
41:04
Speaker 1: much pride do you do you get from that that
41:07
Speaker 1: they they've really taken what what you've done and your
41:12
Speaker 1: all your advocacy work and followed in your footsteps.
41:16
Speaker 2: Oh I'm extremely proud. I'm a very proud of Bombas.
41:26
Speaker 2: I feel very I feel very good about my about
41:30
Speaker 2: my life. I feel very good about my life, especially
41:34
Speaker 2: after I've been validated and I know for who I
41:38
Speaker 2: am and I feel like I have gone forward and
41:41
Speaker 2: I advocate for myself. I feel very good about it.
41:45
Speaker 1: That's absolutely fantastic. And I know, I know you've done
41:49
Speaker 1: so much in terms of advocacy and a lot of
41:53
Speaker 1: awards that you've received in letters from from the highest
41:57
Speaker 1: of high offices. Just as we go sort of towards
42:01
Speaker 1: the end here, where would you like to see that
42:06
Speaker 1: advocacy going. Obviously, do you have a daughter or two
42:09
Speaker 1: daughters in the field at the moment, what would you
42:14
Speaker 1: like to see them achieve I guess later in life,
42:18
Speaker 1: and what would you like to see.
42:22
Speaker 2: Hoping for my younger daughter, Sharon to win the Nobel
42:24
Speaker 2: Prize m resolve Hrshbrog's disease and related diseases. Hirsprongs really
42:31
Speaker 2: has to do with the nerves, as we all know,
42:33
Speaker 2: but there's also another disease that has to do with
42:36
Speaker 2: the muscles that has the same symptoms, and she's working
42:42
Speaker 2: on both. It gives the same there's no muscular there's
42:47
Speaker 2: no there's nothing muscular, and she's working on both. And
42:50
Speaker 2: if she could resolve both, of course that's going to
42:53
Speaker 2: be very very big deal. Yeah, and I think she
42:58
Speaker 2: could do it.
43:00
Speaker 1: Yeah, absolutely, Well, well we we I think we all.
43:04
Speaker 2: Need and I'm very proud to say that Harvard and
43:09
Speaker 2: University of Pennsylvania fought over her in front of me.
43:13
Speaker 1: That's not a bad That's not a bad position to
43:15
Speaker 1: be and is it. That's not a bad position to
43:23
Speaker 1: be the best of the best fighting go over you.
43:25
Speaker 1: I think we all.
43:31
Speaker 2: I just hope that both my daughters just strive to
43:34
Speaker 2: do the best that they can to have the best life,
43:38
Speaker 2: to keep themselves healthy and happy, and to contribute the
43:43
Speaker 2: best that they can to the world, to lead the
43:45
Speaker 2: world a better place.
43:47
Speaker 1: Fantastic, that's a fantastic sentiment to finish on. And just
43:51
Speaker 1: for me, I think, and from a lot of people
43:53
Speaker 1: that have either spoken to you or listen to this show,
43:57
Speaker 1: thank you so much for all of your your tireless
44:01
Speaker 1: advocacy and for also producing two daughters that are going
44:06
Speaker 1: obviously gone to do the same thing and will undoubtedly
44:08
Speaker 1: do incredible things in the future. Thank you. So much
44:13
Speaker 1: for coming on.
44:14
Speaker 2: Oh, You're welcome any time, anytime.
44:20
Speaker 1: Thank you for listening to the podcast. Find us on
44:23
Speaker 1: Instagram Tom's Underscore Hirshbrung's Underscore podcast. Listen to previous episodes
44:28
Speaker 1: on Spotify by searching Tom's Hirshbrung's podcast