No Easy Answers in Bioethics Podcast

My Experience Living with a Spinal Cord Injury: Kelly-Blake and Van Linden - Episode 22

May 6, 2020 Karen Kelly-Blake Mark Van Linden photo

In the words of guest Mark Van Linden, “adversity can present itself to anybody at any time.” This episode features a personal narrative of life with a spinal cord injury. Center Associate Professor Dr. Karen Kelly-Blake is joined by Mark Van Linden, MSA, and president of Adversity Solutions LLC. Mr. Van Linden experienced a spinal cord injury in 2009. In conversation with Dr. Kelly-Blake, Mr. Van Linden candidly shares his story, discussing his life before and after his injury, and addressing not just the physical impact, but the mental, emotional, and relational impact of becoming paralyzed at age 39.

Recorded May 1, 2020

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This episode was produced and edited by Liz McDaniel in the Center for Ethics. Music: "While We Walk (2004)" by Antony Raijekov via Free Music Archive, licensed under a Attribution-NonCommercial-ShareAlike License.

Episode Transcript

Liz McDaniel: Hello and welcome to another episode of No Easy Answers in Bioethics, the podcast from the Center for Ethics and Humanities in the Life Sciences at the Michigan State University College of Human Medicine. This episode features a personal narrative of life with a spinal cord injury. Center Associate Professor Dr. Karen Kelly-Blake is joined by Mark Van Linden, MSA, and president of Adversity Solutions LLC. Mr. Van Linden experienced a spinal cord injury in 2009. In conversation with Dr. Kelly-Blake, Mr. Van Linden candidly shares his story, discussing his life before and after his injury, and addressing not just the physical impact, but the mental, emotional, and relational impact of becoming paralyzed at age 39.

Mark Van Linden: Okay, well, my name is Mark Van Linden. I’m 50 years old, and I am a T10 paraplegic.

Karen Kelly-Blake: Good afternoon, Mark. I am Dr. Karen Kelly-Blake. I’m an associate professor in the Center for Ethics and the Department of Medicine here at Michigan State University in the College of Human Medicine. We want to thank you so much for joining us today to give us a brief outline of your life and what it means to live with a spinal cord injury. We look forward to having this discussion with you today. So, I leave it to you.

MV: Well thank you. I appreciate the invitation and I always, I’m always encouraged and excited about sharing my experience with other people, for no other reason than just make people aware of how adversity can present itself to anybody at any time. And some of the pitfalls that are associated with that type of adversity, that are really common, but we never hear about ‘em. So, I should start off by just giving you a little bit of, of background of where I came from, of how, because it’s an important part of the story that allows people to understand the fall that happened to me while I was going through my experience of becoming paralyzed.

So, if we, if we go back to my high school days, I was, I’m an only child, and very independent my whole life. I went to a private high school, got a good education. I was college-bound, I played collegiate basketball for Lansing Community College for two years, so I was very competitive. I transferred to Central Michigan University and got a bachelor’s degree in manufacturing. Where I became, after that I became an engineer in the automotive industry. Very successful, I might add. I enjoyed the fast pace of automotive manufacturing. The excitement and the challenge was very conducive to my personality type. And I did that in that industry for a very long time, became a leader, a plant manager. And then in my late, or I’m sorry, my late twenties early thirties I met someone, got married at 32, started a family, and was living the American dream.

My wife and I were both working professionals. We had two daughters. And it seemed like the whole world was in my hand, and I was just taking it by storm. Then at 37, I had an aortic dissection, where the visceral lining from my aorta separated. And I was very lucky because that’s usually called “the widow maker” because it blocks very important arteries off of the aortic artery. And when blood flow is suspended, your organs start to die. And they typically can’t get in there fast enough, and you just don’t make it. But I was lucky because the dissection happened severe enough where the lining completely separated and just wadded up down into my femoral arteries, blocking the blood flow to my legs, but the blood flow to all my organs, it remained. So, there was no mortal danger at, after the dissection, only a morbid danger. So, they got in there and did an emergency bypass where they tapped into my right axial artery and supplied blood to my legs with an 8 millimeter tube. Which was enough to keep my legs alive and functioning, but after I healed it was hard to run, and I couldn’t exert myself or anything like that. But, I simply resolved to the fact that this is how life is going to be for me, and as long as I didn’t want to run or do any extensive exercise with my legs, I was gonna be fine.

Well, I lived like that for two years, and then a routine annual checkup with my vascular surgeon and cardiologist discovered that my abdominal aorta and my thoracic aorta have dilated, or became aneurysmal. And it needed to be repaired. Which I didn’t think was a big deal, honestly, after everything I’d been through. I already had a valve replaced in 1999 and that went, you know, real, real good, uneventful. And then, I had the dissection in 2007, I survived that.

Well, by this time I’m getting a little, I’m getting a little arrogant about these surgeries. And I said, okay, let’s fix this thing. I mean, let’s get it done, put it behind me. And they said, well, Mr. Van Linden, this is a big operation. And I immediately thought, well, does that mean the other ones weren’t? Because they seemed pretty big to me. And they said, well, what we want to do is we want to fix your abdominal aorta and your thoracic aorta in one surgery. And this surgery is going to be anywhere between 14 and 18 hours. And we’re going to repair your entire aorta from the arch all the way down to your femoral arteries. And I looked at it as a plus. That this is going to be a one-and-done and I don’t ever have to worry about it again. But what they were trying to convey to me is that they were going to open my entire thoracic and abdominal cavity, 4 inches at a time, all the way from one end to the other. And the incision is actually like a candy cane incision, where they started behind my shoulder blades, and then they made a spiral cut down around my left rib cage, and then came around the front in my, in the front down by my stomach, to about 4 inches below my belly button. And they did that in 4-to-6-inch increments. They didn’t open it up all in one.

KKB: I have a quick question.

MV: Yeah.

KKB: Mark, so is this, was this standard clinical procedure that they would do both, that they would do the entire repair at one time. Or was is that the severity of your particular disease necessitated that they do it all at once.

MV: Yeah, good question. So, I, I’d failed to mention that I have Marfan syndrome, which affects the elasticity of all of my arteries. And the reason they wanted to do it all at once was if they went to the abdomen and repaired the abdominal aorta like they would a person without Marfan’s, and then they discovered that when they went to go sew to the thoracic aorta at the diaphragm, that tissue of the aorta was not taking the suture because it’s diseased with Marfan’s, the surgery would then become an emergency surgery. On the table. Which is the worst situation. So, they wanted to preempt that risk by having the whole surgery be elective and planned, and repairing all of it in one shot. Because the thoracic aorta was slightly aneurysmal also. Not to the point where they would warrant surgery, but because it was slightly aneurysmal, it said, this isn’t gonna get smaller. And he has Marfan’s. So, we should attack this now. And that’s why they did both the thoracic and the abdominal in one shot.

So, I don’t know my anatomy as well as people in the health care industry, but there are I believe six arteries that come off of the aorta that feed the spinal cord. And Mother Nature doesn’t perfuse all six of those arteries for everyone. Sometimes only five are perfused. Or four of them, but that’s enough to supply the spinal cord with blood and oxygen to keep it alive the entire natural life of, of the person. So when they cut those arteries, and then reattach ‘em to perfuse ‘em, by design you expect that if I have two arteries supplying one part of the spinal cord and I clip one, I still have the other one perfusing while I’m reattaching the one I’ve just clipped, and attaching perfusion to that. They don’t know this for a fact, but they speculate that when they disconnected the arteries perfusing the spinal cord, that maybe they, I only had one artery perfusing naturally. And when they cut one, I had none perfusing until they reattached it and got it on bypass. And that may have been enough to kill the spinal cord at the T10 level.

But, what confuses them about that theory is after the surgery when they reattached everything and I had another CAT scan, all arteries showed perfusion So, if that theory were true, one of those arteries would have not perfused after the surgery, does that make sense? So it’s all speculation, but sometime during that 18 hour surgery, I became paralyzed at the T10 level. And I was in the ICU for two weeks in a coma. I had double kidney failure, pneumonia. I had two blood transfusions. I also had dialysis twice. I was in bad shape and they really expected I wasn’t gonna make it. But I did. And after my two weeks in ICU, I spent another week in acute care, and then they transferred me to Mary Free Bed. Where I spent two months there, and they, where I went through rehabilitation.

The worst part about my rehabilitation was not the physical part. It was the emotional and psychological part. After going through such a traumatic experience physically, you naturally fall into a state of depression. At varying levels depending on the patient. But on top of that I had the psychological impact of realizing I would no longer walk again. And that on top just put me into such an acute level of depression that it was my biggest hurdle. It kept me from my physical therapy, it kept me from learning the things I needed to learn about catheterization and bowel program, and hygiene. All things that were very important to be able to survive and cope with a spinal cord injury, and I was just resistant to all of it.

And that played a huge negative impact on my recovery. That depression lasted a good portion of a year, and it took a toll on me, and my marriage, my relationship with my wife. My entire family. Fortunately, my kids were 2 and 4 at the time. So they really didn’t understand or realize what was happening. But, to all the adults, it was extremely impactful. So, I knew, I was fortunate that I’m educated. And you can imagine how detrimental these things are to people who don’t have the intellectual prowess or education to recognize what’s going on. I was fortunate enough where I could evaluate myself and my family and my relationships and say, this is extremely unhealthy. I don’t know what’s going on, but what I’m witnessing and what I’m observing is toxic. And I have got to fix this. So, I sought the, I sought some help from a psychiatrist, explained to him what was going on, and he said, Mark, it’s just really obvious that you are stuck between living and dying. You, you don’t want to do either, but you feel you have to do one. And you can’t decide, so you are stuck, and you need to make up your mind. You need to pick one and get on with it. And when he said that I was shocked, because he didn’t tell me which one to pick. He just said, pick one and get on with it. [Laughs]

And that really scared me, because I felt like he, for the first time I just got a license from someone to end my life, which is half what I wanted to do. And I wasn’t sure if I had the courage, or maybe lack of, to do it. But he gave me a lot to think about. So, I was downstairs in the waiting room waiting for my bus to come get me to take me home. And that psychiatrist walked by me in the lobby, and he said to me, there’s one other thing I need you to understand that I didn’t tell you upstairs. He said, you don’t know nor will you ever be aware of whose life you’re impacting, and who’s watching you for inspiration. If you quit, someone else may also die because of it. But if you survive, many people’s lives may be impacted in a positive way. But you’ll never know either. Just know that if you make that decision, you’re also making a decision for many other people. And then he turned around and left. And when he left he got in his car and drove away and I’m thinking, who is this guy? What a nut. Because I had never met him before in my life. That was the only hour in my entire life that I’ve ever talked to that man, and I still don’t know his name. So, I had the prescription filled for some, I think it was Cymbalta is what it was called. I took that medicine and the lows weren’t as low anymore. And I was able to do my physical therapy. My outlook changed. My energy came back. My relationship changed with all the adults in my family, and all my friends. And I could tell I started making the turn.

It was probably six months after that I went back to work, and I just hit the ground running, no pun intended. And I haven’t looked back since. So, it’s been 10 years, I had my 10 year anniversary in November, past November. And I’m 50 now, so I had a few milestones in 2019. My 10 year anniversary and I turned 50 years old and, yeah. And I think I’m doing pretty good actually. I have my days. I don’t like being in a wheelchair. I still get mad, I still get angry and frustrated because my brain is what it is, and I am who I am. I still want to be independent, I still want to do all the things I did for the previous 39 years prior to be in paralyzed, but I can’t, and that frustrates me. But all of my responsibilities as a husband, and a father, and an employee, and a citizen, I am, I think anyway, I am fulfilling all of those things as I promised I would. And I think I’m doing a better job than some people who are able bodied are.

KKB: Well, Mark, I know having met you in person, I would have to agree with that assessment. I think in many ways you act as an inspiration, as the doctor told you in the lobby as you were waiting for the bus. That sounds like that was a very impactful encounter with this psychiatrist, whom you still don’t know. Which would offer itself a whole different story apart from this. But I was wondering if you could perhaps speak to the audience about your injury and the pain that you may currently still experience.

MV: Sure.

KKB: And how that impacts your day-to-day living. And also you spoke to the fact that you’re still able to meet your obligations for your family, as an employee, as a citizen, as a father. If you could also speak, if you don’t mind, to what such an injury does to a marital relationship. And how perhaps you have been able to navigate that and come out on a positive side.

MV: Yeah. So, the, addressing the pain. So, with a spinal cord injury, many, but not all, spinal cord patients will experience nerve pain. Also called neuropathy. And this nerve pain, diabetics often get it, it’s like a burning, needle sensation. And for me it’s in my thighs, and in my buttocks. And the longer I spend in the wheelchair throughout the day, or if I’m fatigued, or I don’t feel well. Or sometimes if I’m just stressed, this pain is far worse. And it’s exhausting. Because it’s nonstop, and there is nothing, there is no medication available to make it go away. There’s, there’s therapies that can distract from it, or lessen it a little, but for the most part other than sleeping, it’s just nonstop always there. And impacts any pleasure that you would have doin’ any hobbies or anything recreational. Watching a movie, going out to eat with family and friends. It’s just hard to be pleasant, and it, like for me it makes me grumpy, and I just want to get out of my wheelchair so bad. I just want to be done with whatever I’m doing and go home. So, it can oftentimes make you not want to be social and engaged. And then as a result you get kind of distant from people. Because they stop inviting you because you’re always saying no. You know, like it’s at the end of the day when it, it’s at its worst. So that’s when everybody wants to go out to dinner, and that’s when everybody wants to go out for a beer after work or in the evening. But I’m already spent by then. So that, that’s, that is hard to deal with. But, like I said there’s just really nothing out there. I take Tylenol #4 with codeine, and that’ll often relax me. And when I get relaxed the neuropathy tends to subside a little bit. I’ve tried marijuana gummies, candy. That really doesn’t affect the pain, just acts like a distraction. And when I do that, when I use that I can’t drive, or, or work because I can’t focus. So, that’s not, that hasn’t been really effective for me. For some people it is, but it hasn’t been for me.

So, now to switch gears as far as my relationship goes with my wife. You’d be surprised, maybe not, but it surprised me how much guilt comes with the spinal cord injury. My, my spinal cord injury was a result of a surgery that I had to have to stay alive. If I didn’t have that surgery, I was gonna have a ruptured aneurysm, and I was gonna die. There was just no question about that. So, it’s easy for me to process: I didn’t have a choice, this was something that happened to me, no something I did. But nevertheless, the guilt that I have, having been paralyzed, I feel like I really let my family down. I feel like I’ve disappointed my wife, and that she’s disappointed in me. That maybe she regrets marrying me because I brought this on to the family and to her. And I think about that every day. You can imagine. How, how that would impact a person’s psyche. And even though logically and rationally, I know that that’s not the case. I didn’t do this. But I still can’t get away from it. So, you know, when I go to bed at night that’s the last thing I think of every night is the guilt that I have. The guilt that comes with having brought this burden on to my family. Which sounds horrifically depressing. [Laughs] But it, that’s just a fact of what I deal with.

So, you know, and just a caveat. You can imagine the guilt that spinal cord patients feel who are paralyzed as a result of a motorcycle accident. Or, like for instance I have a buddy who’s paralyzed and has been almost the same amount of time as me. He got paralyzed doing a trick on his dirt bike. So, can you imagine that guy going, playing through his head when he’s having a bad day, that one, had I just not bought that stupid motorcycle, or if I just had not tried to do that dumb trick, I would still be walkin’. Right? I mean, that’s just…

KKB: Yes.

MV: I can’t imagine. Or, or getting into a wreck having been drinking and driving. All that preventable, and, and a better choice. So, and then, the other thing that really bothered me a lot is, that I thought to myself, I’m never going to be able to sexually satisfy my wife again. And, you know, that is one of the biggest reasons people get a divorce. And I just thought for sure that this is never gonna be better. It’s never gonna be what she needs or wants. And that really bothered me. So, after already having been through three surgeries and one paralyzed me, I went and saw a urologist, and I said, hey doctor, here’s my situation. I can’t get an erection because I’m paralyzed at T10. I need help. Whatever you can do, tell me what I need. And he recommended I get an implant. It’s called the AMS 700. I can’t remember the name of the manufacturer off the top of my head. But, it’s a, it’s a penile implant that allows an erection to take place on demand. And, it’s, if your listeners Google it, it’s absolutely [laughs] an amazing piece of equipment. [Laughs] And I’m not bragging, but it [laughs].

KKB: Is that something that your insurance company covered for you?

MV: Everything. They covered every, all of it. It was a, I didn’t pay a red cent.

KKB: Okay.

MV: And, and there wasn’t even a question. When I needed a new wheelchair, I had to go before a board of twelve people and make a in-person presentation just to find a new wheelchair. But when I wanted a penile implant, it happened so fast I was scheduled for surgery two weeks later.

KKB: Oh wow. So that shows you what some of the priorities might be. [Laughs]

MV: Yeah, yeah. Or maybe where the profit margins are. [Laughs]

KKB: [Laughs] Exactly, exactly. Well, Mark, I don’t want to cut you off. I know, but we have a limited time frame for our podcast.

MV: Mm-hmm.

KKB: So if you would, I want you to give us one single nugget that you would like for us to take with us. For those of us a will be listening to this podcast, what is the one thing you would like for them to take away.

MV: Well, for your listeners that are in the med school, or in the health care industry, I think I would like everyone to take away mostly the impact of the emotional and psychological element of a patient with a spinal cord injury. I often hear, I wheel into a restaurant, or I wheel into a store, a grocery store, and I’m pushin’ the cart and I’m doing shopping. People come up to me and say, oh, you’re just so inspirational. Because of what they see me doing physically. But the real story, the real battle, the real fight that goes on daily with a person with a spinal cord injury is emotional and psychological. The perceived quality of life, it is, it can be more debilitating than what the physical portion of the of the injury is. And as a health care provider, any time you have a spinal cord injury patient, you should always ask, pay attention to, and be consciously aware of that element that the, that the patient brings to you. Not just the physical part.

KKB: Well thank you so much, Mark. We appreciate you sharing your story so openly and freely. We hope that this provides an opportunity for our students and other people who will listen to this to understand what it might mean for people that they see in their everyday lives. Although right now we’re not seeing a lot of people out and about, but once that changes that we are able to, that we can take a lesson from what you’ve provided for us today. So again I just want to thank you for your generosity. And I wish you and your family continued familial harmony. Thank you so much, Mark.

MV: Well, thank you. I, and I’m always excited when you invite me to these speaking engagements because you’re always so welcoming, and if any of your listeners have any specific questions, or they want to drill down into a topic that we touched on deeper, they can feel free to reach out to me and contact me. And, and we can discuss anything they like.

KKB: Thank you very much, Mark.

MV: Thank you.

Liz McDaniel: Thank you for joining us today on No Easy Answers in Bioethics. Please visit us online at bioethics.msu.edu for full episode transcripts and other resources related to this episode. A special thank you to H-Net: Humanities and Social Sciences Online for hosting this series. This episode of No Easy Answers in Bioethics was produced and edited by Liz McDaniel in the Center for Ethics. Music is by Antony Raijekov via Free Music Archive.

No Easy Answers in Bioethics Podcast

My Experience Living with a Spinal Cord Injury: Kelly-Blake and Van Linden - Episode 22

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