Latest / When Life Gives You Lemons / What Counts As Independence After SCI (part 2)

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What Counts As Independence After SCI (part 2) · When Life Gives You Lemons

• 0:00
  Kevin: Welcome to our podcast When Life Gives You Lemons.
• 0:06
  Palmi: And I'm Palmi.
• 0:07
  Palmi: We consider ourselves disability advocates and intend to highlight some disability issues and things we find interesting that we frequently encounter when we're out and about.
• 0:18
  Palmi: Also, some history on disability that we find interesting.
• 0:22
  Palmi: This year we're going to include more of the interviews of the people that the disability affects.
• 0:30
  Palmi: We hope you enjoy it.
• 0:31
  Kevin: Oh everybody.
• 0:34
  Palmi: I'm here too.
• 0:37
  Kevin: Oh what are we doing to do Palmi?
• 0:40
  Speaker 1: We're having an interview with Thomas.
• 0:42
  Kevin: Okay, Thomas.
• 1:14
  Palmi: If you have questions or something, you can go through Kevin and you can um talk to Thomas and forward it.
• 1:20
  Kevin: Yeah, that's what we will leave there for right now.
• 1:23
  Palmi: Enjoy the interview, though.
• 1:26
  Kevin: So we're here today with Thomas, who is gonna tell us about his experience with SCI.
• 1:33
  Kevin: Thomas, last time on the podcast, we told our listeners that there are different types of SEI.
• 1:42
  Kevin: So can you go into a little bit of detail about which one you're dealing with?
• 1:48
  Thomas: Yes, so my uh SCI is all in the cervical area, and uh it uh has happened at different times um with the different injuries.
• 2:03
  Thomas: I was actually born without my top vertebrae, my number one cervical vertebrae.
• 2:10
  Thomas: And so when I um at nine years old, I started ice skating and of course falling on my backside, which made my vertebrae, that half vertebrae, moved and moved and moved until it was leaning right against my spinal cord, and that uh caused my first spinal cord injury.
• 2:35
  Thomas: And then from there, many, many years later, um, like like 45 years later, I uh I fell in the ice on the way to work, and that herniated um another disc in my cervical area, causing another spinal cord injury, as they didn't catch it and operate on it for 18 months, and then a year after that, they I had another herniation with another spinal cord injury, and now they totally fused my cervical area.
• 3:15
  Thomas: But with all those spinal cord injuries, that has left me with mobility issues, with breathing issues, you know, and other problems that I deal with on a day-to-day basis.
• 3:32
  Kevin: I'm sorry to hear all that, Thomas.
• 3:35
  Kevin: I'm sorry it took them so long to find that.
• 3:39
  Kevin: Yeah.
• 3:40
  Kevin: Sounds like it would be such a simple thing to find.
• 3:45
  Thomas: Uh well, you would think so, but I I I guess I had some other injuries that were masking it.
• 3:52
  Thomas: As at the same time, I also tore um my my ankle, the cartilage in my ankle.
• 4:01
  Thomas: So they thought my balance problems were due to that.
• 4:05
  Thomas: So they operated on that, and then they sent me the PT for that, and my balance still was very, very bad, even after that, you know, was was better.
• 4:18
  Thomas: So that's why it probably took them longer than n under normal circumstances.
• 4:25
  Kevin: Right, right.
• 4:26
  Kevin: Well, where do you live, Thomas?
• 4:31
  Kevin: And I live in I live in uh state is good.
• 4:37
  Thomas: Yeah, no, I live in Fairfield, uh, Connecticut.
• 4:41
  Thomas: And um, you know, I've I've tried, I still do physical therapy a couple of times a week.
• 4:50
  Thomas: I've also I uh go to a gym and I walk in the pool with assistants to strengthen my legs.
• 4:59
  Thomas: Um so you know I do what I can, you know, it's I'm sure you know, Kevin, it's one step forward, two steps backwards sometimes.
• 5:11
  Kevin: A lot of times it does.
• 5:13
  Kevin: Uh let me ask you a question here.
• 5:16
  Kevin: I would assume that in Connecticut you do some cracker doctors.
• 5:22
  Kevin: That doesn't seem to be the case.
• 5:25
  Kevin: Uh I live in a more or less rural area, and what I found is that doctors tend to not listen as much as they do talk.
• 5:39
  Kevin: Was that your your experience as well?
• 5:44
  Thomas: Yeah, yeah, I agree with you a hundred percent.
• 5:48
  Thomas: Finding that right doctor is so so difficult.
• 5:54
  Thomas: And I've had a lot of uh neurologists that I just didn't click with, and now honestly, I just see a physiatrist in Connecticut.
• 6:08
  Thomas: I have a uh a backlog and pump to help me with my my spasticity, and he manages that, and he listens, you know, he is absolutely the best.
• 6:23
  Thomas: And um, you know, I know I know it's hard to find that one doctor, but uh I've been lucky enough to find him.
• 6:34
  Kevin: Yeah, it took me uh several years to actually find a doc a neurologist that uh would you know actually listen to me and talk to me and you know find out what the hell's going on and all that stuff.
• 6:53
  Thomas: But uh you know, you're absolutely right, Kevin.
• 6:57
  Thomas: Uh people should not be if if they don't think they click in with their doctor, they shouldn't stay with them, they should continue to to look.
• 7:08
  Thomas: Why, you know, it's your body, your care.
• 7:11
  Thomas: You gotta keep looking and find that doctor.
• 7:15
  Speaker 3: Well, unfortunately, Thomas uh you only live out in the boonies like it.
• 7:24
  Speaker 3: I do.
• 7:26
  Speaker 3: Uh it's like a two-hour drive to somebody else that can do the neurologist stuff.
• 7:34
  Speaker 3: So yeah.
• 7:35
  Speaker 3: What if it's just plain luck?
• 7:37
  Speaker 3: I happen to have neurologists nearby the city next to me that would, you know, that I clicked with.
• 7:47
  Speaker 3: I didn't have to like keep driving singles all the time.
• 7:54
  Speaker 2: Yeah, I yeah, I you're absolutely right.
• 7:58
  Speaker 2: Uh that's sometimes even in an area it's it's hard to uh to find.
• 8:06
  Speaker 2: And I I feel bad for those for those folks.
• 8:12
  Speaker 3: Well, yeah, a lot of it is a choice of lifestyle.
• 8:17
  Speaker 3: Like uh I assume if you uh are gonna live like off the grid in Alaska or whatever, you've getting a little thought of things like how hard it will be to get health care and stuff.
• 8:34
  Speaker 3: Right.
• 8:35
  Speaker 3: Perhaps you you figure out it's worth taking risk until until until something happens to you.
• 8:45
  Speaker 3: Like uh right now I know it would be a lot easier to move to a city.
• 8:52
  Speaker 3: But I really don't like living in the city.
• 8:56
  Speaker 3: Right.
• 9:00
  Speaker 3: I get that, yeah.
• 9:02
  Speaker 3: Uh so I'll put up with the occasional having to go to Salis.
• 9:09
  Speaker 3: But yeah the first three years that I was trying to get this diagnosis and figure out what was wrong with me was like seemed like I was driving there a couple times a week.
• 9:25
  Speaker 2: Oh yeah, my doctor is uh is an hour at least an hour away, so I know what you mean.
• 9:36
  Speaker 3: Yeah.
• 9:37
  Speaker 3: Well, if all goes well with the traffic, I can kind of make it there in an hour and a half.
• 9:45
  Speaker 3: Like I said, it'll a lot of it depends on traffic.
• 9:50
  Speaker 2: Yeah, same here, same here.
• 9:52
  Speaker 3: Yeah.
• 9:53
  Speaker 3: So um I guess you say you have uh uh C1 injury.
• 10:02
  Speaker 2: Yeah, that was my first injury, C1, then uh down by C4, C5, and then uh C6.
• 10:13
  Speaker 3: Yeah, I can kind of see how uh not having one of your vertebrae affects a lot of areas around it because nothing else.
• 10:25
  Speaker 3: I mean it's kind of like having a slin key in your neck.
• 10:30
  Speaker 3: Right.
• 10:30
  Speaker 3: So uh what sort of mobility issues are you dealing with?
• 10:38
  Speaker 2: So I have a lot of problems.
• 10:40
  Speaker 2: Well, certainly with balance.
• 10:43
  Speaker 2: Um I have no confidence walking, so I for the last the this my last surgery was about ten years ago, so now I use a walker to get around.
• 10:59
  Speaker 2: Um and it's it's just it's very difficult with having no balance, um and you know it affects so much um your strength and you know, just trying to go one place to the other.
• 11:20
  Speaker 2: Sure.
• 11:22
  Speaker 3: Sure.
• 11:22
  Speaker 3: Um I have a disease that affects the way I walk and talk kind of like yours, in that it affects uh certain part of my brain at the top of my brainstem.
• 11:40
  Speaker 3: And uh like uh walking, I have no confidence in walking.
• 11:47
  Speaker 3: So I pretty much use the wheel of chart everywhere I go.
• 11:51
  Speaker 3: There's no telling where my feet are gonna go, and I have no balance at all.
• 11:57
  Speaker 3: Yeah.
• 11:58
  Speaker 3: So I know exactly how you feel, you know, you're you're describing exactly a feeling I know.
• 12:09
  Speaker 2: It's um and when it first happens, you know, it's a it's a very um I don't know the right word, but you know, it seems like yesterday everything was fine, you know, walking to work and everything else, and then here I am today using a walker.
• 12:33
  Speaker 2: So, you know, it's a big adjustment when I go through airports, I get I get the wheelchair.
• 12:40
  Speaker 2: Um yeah, you get the wheelchair treatment.
• 12:45
  Speaker 2: I yeah, yeah, you do what you gotta do.
• 12:49
  Speaker 3: Yeah, well, uh for those of you that don't use a wheelchair, wheelchair treatment going through security is usually a long involved process.
• 13:03
  Speaker 3: Yes, it does.
• 13:05
  Speaker 3: So uh what issues do you have with your breathing?
• 13:13
  Speaker 2: Well, because of this uh the spinal cord injuries, sometimes the the messages from my brain don't go to my I guess my breathing muscles to breathe.
• 13:29
  Speaker 2: Right.
• 13:30
  Speaker 2: So it's not so much during the day because obviously I'm awake, but at night I have uh central sleep apnea where I'll just stop breathing.
• 13:42
  Speaker 2: Right.
• 13:44
  Speaker 2: So um in the beginning before they caught it, you know, I was stopping breathing like 70 times an hour.
• 13:56
  Speaker 2: So it was really affecting my mental state.
• 14:03
  Speaker 2: But since then they've put me on a ventilator at night, which is different than a CPAP machine.
• 14:11
  Speaker 2: The ventilator actually mimics your breathing to help you when you're when you're struggling.
• 14:19
  Speaker 2: Um so so that has really helped uh you know my mental state and helping me stay on track.
• 14:29
  Speaker 3: Good.
• 14:30
  Speaker 3: Okay, um are you still working?
• 14:36
  Speaker 2: Well, actually, um when this all happened uh after my last surgery, and I knew I like I said, I I live in Connecticut and I used to work in Manhattan, I couldn't go into the city anymore, and my my company was kind enough to let me work from home for the last 10 years, and I just retired in June.
• 15:02
  Speaker 2: Um so you know, and I say that quite happily that they they were kind enough to let me work from home.
• 15:14
  Speaker 3: Yeah, pre-COVID, that was kind of a rare thing.
• 15:19
  Speaker 3: You had to wash your way up and have an employer that's gonna work with you that uh get that.
• 15:27
  Speaker 3: I wasn't so lucky, so I was just kind of out of work.
• 15:32
  Speaker 3: But anyway, um back to your situation, what kind of work is it, if you don't mind me asking?
• 15:41
  Speaker 2: No, no, no, it's uh it was a project manager for a uh large financial company.
• 15:48
  Speaker 2: And the truth is that you know, these days a lot of the people in the group worked in different locations anyway, so whether they were in Texas or on the other sides of the world, a lot of work was done via the phone anyway.
• 16:05
  Speaker 2: So it just and then COVID happened, so then everybody was working from home.
• 16:11
  Speaker 2: Um, so it, you know, knock on what it all worked out.
• 16:18
  Speaker 3: I'm glad it all worked out for you.
• 16:26
  Speaker 2: You know, about five years ago, Kevin, I was um in a very, very dark space mentally, obviously.
• 16:39
  Speaker 2: Uh, you go through it, I'm sure a lot of people go through it wondering how you got there.
• 16:44
  Speaker 2: And then, you know, I had an epiphany.
• 16:49
  Speaker 2: It was January of 20 uh 2020, and you know, I just woke up one day and said, enough of this.
• 16:59
  Speaker 2: I um, you know, stopped taking all the pain pills, and since then I've mentally tried to turn my life around with the physical therapy.
• 17:11
  Speaker 2: I uh had my car adapted so I can drive with my left foot and I get around that way.
• 17:20
  Speaker 2: Um, and I just try to do more and more to, you know, if this is what it is, still have to, you know, live the life.
• 17:35
  Speaker 2: So I I do the best I can and um you know I'm looking to help others, you know, with their mental state and let them know there is life after.
• 17:51
  Speaker 3: Yes, that's very important uh because if that depression gets too deep, it can, you know, lead to things like self-harm and all those other stuff.
• 18:04
  Speaker 3: Or you know brain degrees of uh lack of self-care.
• 18:12
  Speaker 3: And that stuff can be important.
• 18:16
  Speaker 3: I mean the self-care.
• 18:19
  Speaker 3: As you said, you're doing the physical therapy because it it's pretty important to keep control of what you can't control, you know.
• 18:30
  Speaker 3: Keep your muscles uh from you know uh just going away entirely.
• 18:38
  Speaker 3: Getting some strength in what you can't control and all that other stuff.
• 18:47
  Speaker 2: Yeah, I mean, I agree with you.
• 18:49
  Speaker 2: I mean, I and I can really feel it.
• 18:52
  Speaker 2: Like if I do physical therapy, say on a Thursday, and then by Sunday from you know, just sitting around, especially in the winter over the weekend, I can definitely feel it for me anyway.
• 19:09
  Speaker 2: Um, so it is important, not that I'm looking for physical therapy to pull off a miracle, um, but just for the mere f fact that they can just keep things moving i is a big plus for me.
• 19:30
  Speaker 3: That's good to you.
• 19:31
  Speaker 3: Um what is your uh cost of living like there where you are?
• 19:40
  Speaker 2: It's uh pretty expensive.
• 19:42
  Speaker 2: Only because we're we're considered like one of those um I forget what they call it, but uh a lot of people uh from this area commute into Manhattan.
• 19:56
  Speaker 2: Right.
• 19:57
  Speaker 2: So it it is expensive.
• 20:01
  Speaker 3: Yeah, we have a kind of uh a couple areas here near St.
• 20:06
  Speaker 3: Louis that like that.
• 20:08
  Speaker 3: They're close enough that they have 20 bark and sea loss, so they make quite a decent wage as opposed to like the rest of us in Missouri that don't.
• 20:23
  Speaker 3: So I know what you mean there and their cost of lobbying is a lot higher there.
• 20:30
  Speaker 3: Yeah.
• 20:33
  Speaker 2: Cost of well, everything really.
• 20:36
  Speaker 2: It's true.
• 20:38
  Speaker 2: Nothing seems to go down, does it?
• 20:41
  Speaker 3: Yeah.
• 20:42
  Speaker 3: Uh yeah, that's weird how that that works.
• 20:48
  Speaker 3: I mean I get it like right now with the uh conflict with Iran, I get it the gas something to go up.
• 20:57
  Speaker 3: Why does it take so long to go down?
• 21:02
  Speaker 2: Yeah, exactly.
• 21:03
  Speaker 3: I can't really uh figure that out.
• 21:06
  Speaker 3: And uh it's gonna be a lot worse on uh people in say Europe that don't have their own oil.
• 21:19
  Speaker 2: Yeah.
• 21:20
  Speaker 2: No, I agree.
• 21:22
  Speaker 3: Uh you know, I remember being stationed in Europe in the last to buy coupons to get the gas prices down similar to what they are in the US.
• 21:36
  Speaker 3: We pay with these coupons, you know, that we buy but yeah, I I assume they're you know, not it's not gonna be anything to brag about right now because our gas is going up too.
• 21:54
  Speaker 3: I don't know how much of theirs is going up, but Yeah, it started off high.
• 22:02
  Speaker 3: Yeah.
• 22:04
  Speaker 3: It's ridiculous.
• 22:06
  Speaker 3: Well uh can you think of anything else you want to say?
• 22:14
  Speaker 2: No, I would say I I guess the biggest thing in you know uh is that it's not the end.
• 22:26
  Speaker 2: Uh there's so much so much more, you know, you can do even with a spinal cord injury.
• 22:35
  Speaker 2: Um you know, to to stay positive and to get through it.
• 22:41
  Speaker 2: Um as long as you have your mind and your heart, you know, there there's a lot more you can keep doing, even if it's with a walker or in a wheelchair.
• 22:55
  Speaker 2: Right.
• 22:56
  Speaker 2: It's the fact that you're still here, you're still talking, you're still breathing, um, and you can still do for yourself and others.
• 23:08
  Speaker 3: Yeah.
• 23:08
  Speaker 3: You've got a very good attitude about that disability there.
• 23:15
  Speaker 3: And that's what a lot of people don't understand who are not disabled.
• 23:22
  Speaker 3: We're not asking for like special treatment, we're just asking for the ability to get out there and do things, you know.
• 23:33
  Speaker 3: Right.
• 23:34
  Speaker 3: I don't know how it is for you there, but it's uh I don't have any complaints about people I deal with here.
• 23:44
  Speaker 3: Uh they're then usually like whenever I go to a doctor's office, the receptionist has got quite a large desk to hide behind.
• 23:56
  Speaker 3: She's usually covered up by computer screens.
• 24:00
  Speaker 3: So it's like they're yelling now.
• 24:05
  Speaker 3: I'm gonna I'm right here.
• 24:06
  Speaker 3: I'm right here.
• 24:08
  Speaker 3: You just need to go left or right and you can see me.
• 24:16
  Speaker 2: Yeah, no, I I know exactly those sort of people that that you're talking about.
• 24:22
  Speaker 2: Um not that I do it on purpose, but I think I almost try to I don't want to say embarrass them, but you know, sort of embarrass them, you know, that just act like a like a normal person.
• 24:44
  Speaker 2: Right?
• 24:46
  Speaker 3: Yeah, that's all we're asking for.
• 24:48
  Speaker 3: And people around here are very nice.
• 24:50
  Speaker 3: They, you know, offer to open doors for me, and uh, you know, if I drop something here, let me get there for you.
• 24:59
  Speaker 3: You know, it's just I don't have any problem, you know, it might be a little different saying a big city like New York, but hey.
• 25:12
  Speaker 2: Yeah, you know, funny you mentioned that.
• 25:15
  Speaker 2: I was just thinking about that the other day, Kevin, is that one thing that I found with since being injured and disabled, is I can really now see the humanity in people.
• 25:31
  Speaker 2: You know, that like you were just saying, that offer to help me.
• 25:35
  Speaker 2: Like when I'm trying to get my walker out of the car, a person will actually stop their car and ask if I need help, or you know, really anything that I need.
• 25:49
  Speaker 2: I I volunteer at a at a university nearby, and all the students are are you know offering to help me walk to the where I have to go.
• 26:03
  Speaker 2: And that's great.
• 26:05
  Speaker 2: So I definitely you know, out of this impairment that we have, you see a lot of good.
• 26:16
  Speaker 3: Yeah, you do.
• 26:18
  Speaker 3: Um you just have to allow yourself to notice it.
• 26:23
  Speaker 3: Yeah, I agree.
• 26:25
  Speaker 3: Okay, well, it's been real nice talking to you, and you're the second person around this kind of up there in the northeast.
• 26:37
  Speaker 3: So I don't know how your weather is doing your head now, but I certainly hope it's doing better than mine.
• 26:48
  Speaker 2: Well, anytime you need uh you know to talk about this or or related to this, I'm always available, Kevin.
• 27:01
  Speaker 1: It was very informational.
• 27:04
  Speaker 3: It was a great interview.
• 27:06
  Speaker 3: Thomas is fucking nice guy.
• 27:09
  Speaker 1: Unusual way of having a spinal cord injury.
• 27:12
  Speaker 3: Yeah, it really is.
• 27:14
  Speaker 3: Good to be uh down on FDI.
• 27:18
  Speaker 3: Spinal cord injury to put up the middle or the least of the middle lead.
• 27:31
  Speaker 1: Oh, it can happen to anyone, anywhere, anyway.
• 27:34
  Speaker 1: That's what I'm learning about it.