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Life After the Aneurysm: Living Beyond the Diagnosis · Groove with Portia

0:06
Speaker 1: Welcome to Group Porsche, the podcast that uncovers the hidden
0:09
Speaker 1: treasures within grief. I'm your host, Porsche the Producer, and
0:13
Speaker 1: I'm inviting you to join me on a transformative journey
0:15
Speaker 1: where we were exchange laughter, of course the best medicine
0:18
Speaker 1: of them all, reflect on cherish memories, remember that time
0:21
Speaker 1: that the little boy grabbed my hand instead of his
0:23
Speaker 1: mother's at the amusement park yikes, and of course discover
0:26
Speaker 1: gratitude while navigating one of life's hardest challenges lost. So
0:31
Speaker 1: get ready to grow with me, Porsche the Producer, let's
0:35
Speaker 1: dive in. Welcome back to Grow with Porsche. I am
0:46
Speaker 1: your host, Porsche Booker, and as always, don't forget to like,
0:49
Speaker 1: share and subscribe to keep it with the latest and
0:51
Speaker 1: greatest of law with Grew with Porsche. So something you
0:54
Speaker 1: may know this story about my family, but I had
0:56
Speaker 1: an aunt over ten years ago who suffered from a
0:59
Speaker 1: brain and your and even though she is no longer
1:01
Speaker 1: with us today, the one thing that I still take
1:04
Speaker 1: from her legacy and her memory is how she always
1:07
Speaker 1: made people laugh, how she always brought people together, and
1:10
Speaker 1: how she always had little gag jokes. And you know,
1:13
Speaker 1: as those of you who know about my show. I
1:15
Speaker 1: love to interview individuals who have taken these hard, adverse
1:19
Speaker 1: circumstances and turn them into an opportunity. So today I
1:23
Speaker 1: have the honor of hosting MS Tess Padmore, who also
1:27
Speaker 1: suffered from a brand aneurysm and may have had some
1:30
Speaker 1: complications later on. But the thing that I love about her,
1:33
Speaker 1: that I've read about her, is that she was able
1:35
Speaker 1: to convert that into an opportunity. So welcome, MSS Tests
1:39
Speaker 1: to grew with Portia. How are you today?
1:41
Speaker 2: I am fine, and thank you for having me. I'm
1:44
Speaker 2: sorry to hear about your aunt. I have a cousin
1:47
Speaker 2: who died instantly from a brandism and I didn't know
1:53
Speaker 2: until after mine when my sister contacted her sister, she says,
1:57
Speaker 2: you know, that's how he laying on. They none of
2:01
Speaker 2: my doctors know how I survived because min erupted twice.
2:04
Speaker 1: Wow, and tests, I'm curious, you know, I'm just gonna
2:08
Speaker 1: dive right in. Obviously, medical changes and challenges come, and
2:14
Speaker 1: as you mentioned, you had two aneurysms, right and I'm
2:17
Speaker 1: sure that there was a level of grief that you
2:19
Speaker 1: had from the first one and also from the second one,
2:23
Speaker 1: and I'm curious tests what did it take for you
2:26
Speaker 1: to integrate that grief and find your groove again, to
2:31
Speaker 1: start talking about it and inspiring other people to talk
2:34
Speaker 1: about their challenges.
2:35
Speaker 2: Well, primarily, and let me clarify, it wasn't that I
2:40
Speaker 2: had two animisms. I had one animism that erupted two times,
2:44
Speaker 2: so I was really a month apart. I was lucky
2:47
Speaker 2: that it is. Wow, I didn't even go to the
2:49
Speaker 2: doctor the first time. But what I I mean, what
2:54
Speaker 2: I experienced was something that obviously was a life changing event.
3:00
Speaker 2: Prior to that, I was working on my doctorate at
3:03
Speaker 2: the time in education, and my interest was in health literacy,
3:08
Speaker 2: patient education, and patient advocacy, and my experience with the
3:13
Speaker 2: brain aneurysm was at the point when I finally did
3:17
Speaker 2: go to the doctor, I was misdiagnosed.
3:20
Speaker 3: I could have died again, I could.
3:22
Speaker 2: Have died, but essentially my brain had been hemorrhaging for
3:25
Speaker 2: five months.
3:27
Speaker 3: Okay, yes, for five months.
3:30
Speaker 2: And because of I mean, this kind of touches on
3:33
Speaker 2: some of the difficulties that we have to deal with
3:35
Speaker 2: in the healthcare system and the disability system. I'd signed
3:40
Speaker 2: up for long term disability, but at that time. My
3:43
Speaker 2: employer said, well, your benefit doesn't kick in until Social
3:47
Speaker 2: Security says yes or no, which could take two years,
3:50
Speaker 2: you know. So I went back to work. I was
3:53
Speaker 2: in hospital for a month and went back to work
3:55
Speaker 2: three months later, and literally did not know who many
3:59
Speaker 2: people people were. But I mean, I was married, had
4:06
Speaker 2: a house, you know, a family, and I couldn't just
4:10
Speaker 2: not work and I was supposed to be out a
4:12
Speaker 2: year anyway.
4:13
Speaker 3: I went back to work, and.
4:17
Speaker 2: I was off on disability a few times because of
4:20
Speaker 2: complications at blood clocks in my lungs, all of those
4:23
Speaker 2: kind of things. And I think one of the important
4:26
Speaker 2: things that people don't always realize with catastrophic illnesses, it's
4:31
Speaker 2: not just the physical, really, the psychological is far more difficult,
4:37
Speaker 2: and no one ever addresses that. And so people are
4:40
Speaker 2: sort of in this limbo of not knowing what happened
4:44
Speaker 2: to them, What does it mean? How's my life changed?
4:47
Speaker 2: And I was never assigned a social worker, so I
4:50
Speaker 2: didn't know what was happening to me. The doctors didn't
4:53
Speaker 2: tell my family that I was dying, and I was,
4:56
Speaker 2: and so it was a whole disruption. Now, the other
5:01
Speaker 2: thing that happened was that as a result the result
5:06
Speaker 2: of the traumatic brain injury, my personality changed one hundred percent.
5:13
Speaker 2: I won't say my personality change. Really what happened was
5:17
Speaker 2: the person who I was always inside manifested, okay, because
5:23
Speaker 2: I was an introvert. Now I don't have any inhibitions.
5:27
Speaker 3: Okay.
5:29
Speaker 2: So that disrupted my marriage and I'm no longer married.
5:33
Speaker 2: I worked. I continued to work for five years until
5:36
Speaker 2: my doctors said, you're done the cumulative effect. Okay, I'm done.
5:42
Speaker 2: But then that following year they said I couldn't go
5:44
Speaker 2: to school anymore. And they were I mean, they were
5:47
Speaker 2: right in both instances. I couldn't do it. But what
5:50
Speaker 2: that did to me psychologically was that I felt that
5:53
Speaker 2: I have been thrown away, that I have been discarded,
5:57
Speaker 2: like you're not capable of doing anything anymore. And not
6:02
Speaker 2: that I loved my job, but for someone to tell
6:06
Speaker 2: you that you can't do something, it's really difficult for me,
6:10
Speaker 2: especially when you've been productive, you know, right, I mean,
6:14
Speaker 2: it really is. Like I said to me, it's psychological.
6:17
Speaker 2: And I'm not saying I didn't suffer physically, because I did,
6:20
Speaker 2: but I was depressed about it.
6:24
Speaker 3: And then I thought, you know, you have two choices.
6:27
Speaker 2: You can sit here and be sick, legitimately sick, you know,
6:32
Speaker 2: and just be sick, don't do anything, just get your
6:36
Speaker 2: disability that you're fighting for and all of that. Or
6:39
Speaker 2: you can pick yourself up and figure out how you're
6:41
Speaker 2: going to keep moving forward, because that's the person you are.
6:45
Speaker 2: And so this was now my grandson's twenty three. My
6:49
Speaker 2: daughter was six months pregnant with him, so you know,
6:53
Speaker 2: he doesn't understand always why I love his birthdays. That
6:57
Speaker 2: means I survived another year, right, But I decided, well,
7:03
Speaker 2: what can I do? What is it that I could
7:06
Speaker 2: do in this state?
7:08
Speaker 3: I had it? So I joined an organization called.
7:12
Speaker 2: Oosha osh you know, it's familiar to having any universities,
7:17
Speaker 2: and as a membership organization, so it gave me an
7:21
Speaker 2: opportunity as a member to teach again, teach courses and
7:24
Speaker 2: take courses.
7:26
Speaker 3: I did that.
7:27
Speaker 2: I started taking classical voice and classical piano because that
7:33
Speaker 2: was a benefit of being part of the university community
7:37
Speaker 2: and you have the Eastman School of Music. And finally
7:41
Speaker 2: I got to a psychiatrist, which no one had recommended,
7:46
Speaker 2: and I was lost, and in therapy one day he
7:50
Speaker 2: said to me, you should write. And my reaction was,
7:54
Speaker 2: who would want to read what I write? And he said,
7:56
Speaker 2: that's not the point, right, right, that's not the point.
8:02
Speaker 2: And when I started, so I started journaling, and when
8:04
Speaker 2: I started writing, I found my voice. And I'd always
8:08
Speaker 2: said to him, I felt like I was at the
8:10
Speaker 2: bottom of a well, screaming and no one could hear me.
8:14
Speaker 3: But when I started.
8:15
Speaker 2: Writing, it was like everything, all this stuff just sort
8:20
Speaker 2: of poured out of me. And I did that straight
8:23
Speaker 2: for eight years, this journaling, journally journaling, and then I
8:26
Speaker 2: met an editor someone I was introduced to someone who
8:30
Speaker 2: was leading a women's writers group and had been executive
8:35
Speaker 2: director of one of the writing organizations. And I'd said
8:38
Speaker 2: to her one day, I just have all this stuff.
8:41
Speaker 2: I don't know if it's a book. I don't know
8:43
Speaker 2: what genre it is because I'm an account I said,
8:45
Speaker 2: I don't know what any of this is. And she
8:48
Speaker 2: took it and she went through it. She said, you
8:50
Speaker 2: have five books. Here, you have five books, and these
8:54
Speaker 2: are the five books. So that happened at the same
8:57
Speaker 2: time as a reason, out of all the respiratory difficulties,
9:02
Speaker 2: I decided to get back in the pool and I
9:06
Speaker 2: couldn't do laps anymore. So I started doing aqua aerobics.
9:10
Speaker 2: And at the time I knew how to swim, but
9:13
Speaker 2: I had always worn my hair short natural, but at
9:17
Speaker 2: this time my hair was longer and I couldn't find
9:20
Speaker 2: a swim cat and so I was in the pool
9:25
Speaker 2: two weeks.
9:25
Speaker 3: Swim cap didn't fit. I went online.
9:28
Speaker 2: Everybody else was looking for a swim cap, and so
9:31
Speaker 2: I drew a picture, went to the tailor. That's not
9:34
Speaker 2: how it's done. Went to the tailor and said, can
9:37
Speaker 2: you make this? She said, I can make anything you want.
9:40
Speaker 2: I said, well, you know a lot of people need this.
9:41
Speaker 2: You could make a lot of money. So I went
9:44
Speaker 2: to buy the fabric and when the woman was cutting
9:47
Speaker 2: the fabric, I said, wait a minute, I should be
9:51
Speaker 2: selling this tire. So that's how I had my first prototype,
9:55
Speaker 2: and my design got patented, and I started selling these
10:00
Speaker 2: web caps back in twenty thirteen. I mean, there's a
10:04
Speaker 2: lot out there now, but there wasn't then. So it
10:08
Speaker 2: was a way all of and I found out how
10:11
Speaker 2: high high the drowning rate was in the minority community
10:15
Speaker 2: among children, and so it got much bigger, got much
10:20
Speaker 2: bigger that this is something important to do. Yes, I
10:24
Speaker 2: can still contribute somehow to society, you know, And so
10:28
Speaker 2: it was it was good for me in a way.
10:31
Speaker 2: It was whether my business become successful or not, it
10:36
Speaker 2: was a way for me to prove that I should
10:38
Speaker 2: not be discarded.
10:39
Speaker 1: Yeah, I have contributing.
10:42
Speaker 2: Ye I'm contributing, and I shouldn't be discarded. And so
10:46
Speaker 2: that's really the underpinning. And there's yeah, there's things I
10:50
Speaker 2: can't do anymore, but still, you know, just kind of
10:55
Speaker 2: just keep tinkering, just keep tinkering, keep inventing. And I
10:59
Speaker 2: have a second swim cap that came out about a
11:02
Speaker 2: year ago and self published. I've self published two children's book.
11:09
Speaker 2: I write creative nonfiction. But that same editor took one
11:13
Speaker 2: of my essays I had written when my dog died
11:16
Speaker 2: that day, and she said this should be a children's book.
11:20
Speaker 2: And so I have one children's book that's about grief
11:25
Speaker 2: and loss. And the second one is about the twins
11:29
Speaker 2: that I adopted after he died, the dogs, and it's
11:32
Speaker 2: called Twin Tails, but it's really about adoption.
11:36
Speaker 3: So I have two children's books out.
11:37
Speaker 2: I'm writing a memoir now for all my adventures in
11:41
Speaker 2: the different places I've lived and all that stuff, but.
11:44
Speaker 3: The underlying you know, I think.
11:46
Speaker 2: As far as the brain annualrism goes in any catastrophic illness,
11:51
Speaker 2: whether you're a cancer survivor or whatever it is, is
11:55
Speaker 2: that you know, my goal, my objective, what I have
11:59
Speaker 2: to an offer is what are the things I did
12:02
Speaker 2: to survive? You know, you don't give up. Don't let
12:07
Speaker 2: someone put you in a corner and cast you aside
12:10
Speaker 2: because you can't choose to be sick. I mean, I
12:13
Speaker 2: did it for a little while. It's easy, you know,
12:16
Speaker 2: but it's not healthy. It's not healthy. And so if
12:21
Speaker 2: you can contribute something somehow, we all can, even if
12:26
Speaker 2: it's just talking to doctors to try to help them
12:28
Speaker 2: understand the patient perspective. Because I was misdiagnosed, and I'm
12:33
Speaker 2: very fortunate that I didn't die, and I had to
12:36
Speaker 2: walk away from that doctor in order.
12:40
Speaker 3: That's otherwise I wouldn't be here today, you know.
12:44
Speaker 2: And after going through all of this, I learned, like
12:46
Speaker 2: many people do, I live every day like it's the
12:49
Speaker 2: last day. So I don't have any stress in my life.
12:54
Speaker 2: You know, my marriage ended after thirty years. You know,
12:59
Speaker 2: our speak my mind. I always did, but I really
13:03
Speaker 2: speak my mind.
13:05
Speaker 3: I have to a lot.
13:07
Speaker 1: Wait, we use fine usage, colorful keepsakes, if you catch my.
13:14
Speaker 2: There's there's people that know me pre you know, traumatic
13:18
Speaker 2: brain injury, and people that know me post Okay, the
13:22
Speaker 2: ones that know me before I.
13:24
Speaker 3: Said, oh my god, I never heard you curses before
13:27
Speaker 3: oh my god, you do anything.
13:30
Speaker 2: And then there are the people like my grandkids who
13:32
Speaker 2: only know this me and they tend to say Grandma.
13:39
Speaker 3: I you know, burst out singing or dancing or something.
13:43
Speaker 2: But you know, life is good, and you know we're
13:46
Speaker 2: I believe we're all here for a reason. And if
13:51
Speaker 2: I can help one person, one person, then you've contributed something.
13:56
Speaker 2: And you know, my biggest takeaways far as surviving, that
14:02
Speaker 2: has always been I haven't had the opportunity, but I
14:05
Speaker 2: really would like to to speak to medical groups, you know,
14:10
Speaker 2: about what my experience was like, not just with the
14:14
Speaker 2: doctors but also with the disability system. Yeah, because there
14:18
Speaker 2: are times there were times when I would say, you know,
14:21
Speaker 2: what if I didn't have a college education, what if
14:24
Speaker 2: I didn't speak English, what if I was blind?
14:27
Speaker 3: What you know? What if? You know? What if? What if?
14:30
Speaker 3: What if?
14:31
Speaker 2: And I'm traumatized by it and still had to go,
14:34
Speaker 2: you know, look for advocates to help me. But I
14:37
Speaker 2: knew enough to do that, you know. And so really,
14:42
Speaker 2: you go through the most difficult time, and regardless of
14:47
Speaker 2: people say there are many things in life.
14:49
Speaker 3: That we do alone, and we go through alone. You
14:53
Speaker 3: die alone.
14:54
Speaker 2: Someone might be sitting at your bedside, but you die alone,
14:57
Speaker 2: you know. And when you're going through trying like that,
15:01
Speaker 2: it's rare that you find someone who understands what they're
15:05
Speaker 2: going through.
15:07
Speaker 3: Right I was.
15:09
Speaker 2: I had to go to the emergency room because my
15:11
Speaker 2: face was swelling one time, you know, blood leak and whatever,
15:15
Speaker 2: and you know, they just had a curtain in between
15:18
Speaker 2: the woman me next door. Well, the woman in the
15:21
Speaker 2: bed next door had had brain surgery three days before
15:26
Speaker 2: for brain aneurysm. I was supposed to go home in
15:29
Speaker 2: three days, but I was there for thirty days and
15:32
Speaker 2: they weren't ready to release me, but my sister talked
15:35
Speaker 2: them into it. But anyway, when they left the room,
15:38
Speaker 2: she's crying, and she kept saying to the nurses and doctors,
15:42
Speaker 2: no one understands what I'm going through, this pain, you know,
15:46
Speaker 2: all of it.
15:47
Speaker 3: And when everyone.
15:48
Speaker 2: Left, I just said through the curtain, I understand. I said,
15:52
Speaker 2: I had a brain anism, I know what you're going through,
15:55
Speaker 2: and I was able to talk to her and kind
15:58
Speaker 2: of help her, because when you go through it in
16:00
Speaker 2: the beginning, you.
16:01
Speaker 3: Just lost I don't know way you are or you're.
16:04
Speaker 2: Disoriented, and I mean they literally put me in a
16:09
Speaker 2: wheelchair and just will wield me out the hospital. And
16:13
Speaker 2: so you know, to the extent that I can, you know,
16:18
Speaker 2: it's one of it's one of the goals that I
16:21
Speaker 2: haven't been able to get that right connection, to get
16:24
Speaker 2: the people that I need to.
16:25
Speaker 3: Talk to, to.
16:27
Speaker 2: Tell them what I have learned, what resources are out there,
16:32
Speaker 2: you know, the strength to keep going forward, you know,
16:35
Speaker 2: and give.
16:35
Speaker 1: Yourself well, then two tests, I mean opening yourself up, right,
16:40
Speaker 1: what are the odds that through your challenge of having
16:44
Speaker 1: to go there for a brain bleeder whatever, that you
16:47
Speaker 1: would be that blessing for somebody else. You were that
16:50
Speaker 1: sheiro that you needed during that time and you could
16:54
Speaker 1: pay it forward. So you making that choice to not
16:58
Speaker 1: stay sick, to actually step back into society right, learning
17:04
Speaker 1: to be more assertive, showing your grandkids right, giving others
17:08
Speaker 1: permission to turn their adverse circumstance into an opportunity. What
17:14
Speaker 1: a beautiful thing that you've done. Tests and test We're
17:16
Speaker 1: going to be wrapping up here soon, but I know tests.
17:20
Speaker 1: There's gonna be somebody out there who wants to connect
17:23
Speaker 1: with you. Maybe it is a medical group that wants
17:26
Speaker 1: to have you come in and share your experience to
17:28
Speaker 1: help educate the new professional doctors and nurses that are
17:33
Speaker 1: coming up. How can they connect with you tests? And
17:35
Speaker 1: what do you have coming up in the next six
17:38
Speaker 1: months or so? I know your memoir. I'm excited. So
17:40
Speaker 1: when your memoir comes out, test please we'll have you
17:43
Speaker 1: back on and so please share with us how our
17:46
Speaker 1: audience can connect with you and also what you have
17:48
Speaker 1: coming up in the next six months.
17:50
Speaker 2: Okay, my email address is tests at wolf Clan that's
17:56
Speaker 2: spelled with a C WLFCLA and at LLC dot com.
18:02
Speaker 2: That's my email address. I have two websites. One is
18:07
Speaker 2: called Egghead Socks sques dot com and that's my headwear.
18:13
Speaker 2: So I have not only swim caps, I have chemotherapy caps,
18:16
Speaker 2: I have sports accessories anything. My tagline for my headwear
18:22
Speaker 2: is all you need is ahead. Okay to have hair,
18:26
Speaker 2: you have a lot of hair, it doesn't matter. We're
18:29
Speaker 2: working on my author's website now called testpadmore dot com,
18:34
Speaker 2: and my books will be on there, and talking about
18:37
Speaker 2: wanting to go out and talk to people, because survivorship
18:40
Speaker 2: is survivorship, whether it's cancer, brain, aneurysm, we all go
18:45
Speaker 2: through that same thing. And so that website, we hope
18:50
Speaker 2: will be live by the end of the month, and
18:52
Speaker 2: then people can reach out and schedule times to talk
18:56
Speaker 2: to me or have me come out and talk. I
18:58
Speaker 2: go out to school and I read to first you know,
19:02
Speaker 2: kindergarten through third grade. And I have a new children's
19:06
Speaker 2: book coming out hopefully before the end of the year
19:08
Speaker 2: called The Garden War, our first garden and my great
19:13
Speaker 2: my grandson and granddaughter, other characters in that book. And
19:18
Speaker 2: I'm working on a memoir. So definitely people should reach out.
19:21
Speaker 2: I'm on LinkedIn. That's my most comfortable.
19:25
Speaker 3: Platform for okay, hey, you know what, that's my.
19:29
Speaker 2: Most comfortable platform. So I'm hoping to connect with people.
19:34
Speaker 2: And for all my stuff, books and my headwear, I
19:37
Speaker 2: sell wholesale, you know, so if a group wants to
19:40
Speaker 2: get together a group of swimmers, they don't have to
19:43
Speaker 2: buy them individually, they get together and say, hey, we
19:46
Speaker 2: want to get wholesale pricing, and I'll do that. I
19:48
Speaker 2: accommodate that same thing with the books. I want to
19:51
Speaker 2: get the books out to the schools. There are a
19:53
Speaker 2: lot of children that are grieving, and there are a
19:56
Speaker 2: lot of children waiting for homes. So adoption and loss
20:00
Speaker 2: and grief is very important for kids. And I've had
20:03
Speaker 2: adults use those books for themselves when they've lost someone
20:06
Speaker 2: or lost their pets. So get out there, eggheadsocks dot
20:11
Speaker 2: com s o q u e s.
20:14
Speaker 1: I don't sell socks, right, these are for your head.
20:18
Speaker 1: That's all you need is ahead as.
20:20
Speaker 3: All you need is a head.
20:22
Speaker 2: And the upcoming office website should be up by the
20:26
Speaker 2: end of the month.
20:27
Speaker 3: And I'm gonna start.
20:28
Speaker 2: A substack and have my newsletter on substack so I
20:31
Speaker 2: can talk about different things like health literacy and patient advocacy.
20:36
Speaker 3: That's important.
20:37
Speaker 1: Excellent, excellent, Well, everybody that was missed test pad more
20:43
Speaker 1: that you heard from grew with Portia. And that concludes
20:46
Speaker 1: another episode and everybody until next time, peace and hair
20:49
Speaker 1: grease everyone
21:01
Speaker 2: Once