talking with … Emily Harvey and Whitney Harris (part 2)

Emily and Whitney

Last week I introduced you to Emily Harvey and Whitney Harris. This week, I continue my interview with them about growing up with congenital limb difference, their experience receiving prosthetic care from Shriners hospitals, and how they  wound up in/around the world of prosthetics as adults.

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Dave: You both mentioned that you grew up going to Shriners hospitals. Most people don’t know a lot about them. How did you find your way to them and talk about your experience there.

Emily: My dad was military and my mom I’m sure is the one that found Shriners and started taking me there when we lived in Louisiana. Shriners was the reason I found out about the camp I went to for three summers.

It wasn’t like a place where you would go and see a bunch of other kids. You’d see them in the waiting room, but it wasn’t like it was an environment – like Walter Reed has the environment where everyone just kind of does therapy together and hangs out and talks and gets support through that natural environment. [Shriners] definitely didn’t have that.

But I loved Shriners because they took care of me. I didn’t really appreciate it, I don’t think fully, until I was an adult and was having a lot of issues with my leg and needed that team of doctors who were familiar with a congenital amputee. Every doctor I went to was like, “Wow, your leg was really interesting looking. I’ve never seen this before.” [Emily and Whitney laugh] And I’m like, “You’re not really very helpful.” I realized as an adult how fortunate I was to have a whole team – a physical therapist, a physician, a surgeon – who was so familiar with the congenital amputation and could provide that health care. It’s really hard to find that as an adult. So I love Shriners and I wish I could still go.

Whitney:  So I came to Shriners because my great-uncle was a Shriner. [My mom] had taken me to someone in the private sector and they told her it was going to cost thousands of dollars, she wouldn’t be able to afford it, and, you know, it was like I was doomed. The closest Shriners was in Tampa and we lived in Pensacola, so it was about a 9-hour drive. I worked with the same guy all my life which I really appreciated because we could just go in, get it done and I could leave the next day so I’d only miss two days of school. But at the same time, he wasn’t open to new ideas because he knew what worked for me.

I loved the Tampa hospital. It had an amazing playground and the cafeteria was so good, so I thought it was always a real treat to go there at least every 6 months and play and do all of this fun stuff. It was more like this kind of fun place where I got to go and it was all about me and my siblings didn’t get to.

Emily: I just wanted to segue off of what Whitney said about the prosthetist who wasn’t open to trying new things. Mine was similar. I was wearing a pelite liner with socks, totally old school. When I started working with Walter Reed with all of these prosthetists, they saw my leg as a puzzle. They were like, “Why are you still wearing a pelite liner, that’s so old school. Let’s get you in a gel liner, this is the latest and greatest.” Did custom liners. And guess what socket suspension system I’m in now? Pelite liners with socks. So, you know, I was always wondering why my prosthetist didn’t want to try other things, but I ended up going back to old school anyway. As good as technology gets, I’m still old school.

Dave: You both grew up in coordinated health care systems. You had the doctor, the PT, the OT, and the prosthetist in the same building providing your treatment for the majority of your lives. Now you’re both in the private sector where care is much more fragmented. Do you see any particular strengths or weaknesses of either approach based upon your own personal experience?

Emily: I think it’s definitely good to have the lines of communication open between the people who are providing the care. I know when I was considering my revision [after I left Shriners], I didn’t count on [my providers] to talk to each other, so I’d just request my records and my x-rays. Then I had all the information and I would take it to the surgeon. I took it upon myself to coordinate.

Whitney: I’m 23 and the last time I saw Shriners was when I was 20, so I haven’t been in the private sector very long. Besides being in O&P school where they constantly tell you about the rehab team and you need to talk to all of these people, I don’t think it ever occurred to me as a patient. I don’t think I ever actually connected the dots. If my prosthetist ever did, I wasn’t aware of it. I know now where I work since we’re in the hospital setting and the surgeons are downstairs and physical therapy and occupational therapy upstairs, I think we almost have – not quite ideal – but as ideal as it could be in that our patients just stay in the same building.

Dave: You both could have done anything you wanted with your lives. Emily, you married a prosthetist and are considering careers attached to “disability.” Whitney, you’re a prosthetic resident. Why do you think you ended up there?

Whitney: My mother told me to, point blank. My mother [once] had to make a scrapbook of my future and that’s what she put, that I was going to be a prosthetist. I just thought, “This is great. I no longer have to be like other kids and worry about what I’m going to do when I grow up.” My mother just took care of that problem. [All laugh] I never really saw anything else as an option. I kind of wanted to be a teacher till my mom told me I couldn’t survive on a teacher’s salary with my prosthetic limbs. That’s how I ended up here. [Dave laughs.]

Emily: I’m much more scattered than that. I just showed up at college and I actually wanted to go either into physical therapy or athletic training. I was doing some hours at a physical therapy clinic and this prosthetist came in to see one of his patients and to talk to the physical therapist. And he was like, “Hey, you should come hang out in the shop with me,” and I worked it with my professor that I could do my internship hours at the prosthetic clinic.

And I was like, “This is cool, I’m good with tools and I’ve always liked building things and working with my hands,” so then I was like, “Maybe I should go to prosthetic school.” I actually applied to Georgia Tech and didn’t get in. My uncle was in the DC area and knew this Colonel who was looking for someone to work in Walter Reed and do stuff with prosthetics. I was like, “Well, that’s better than waiting tables at Red Lobster,” and started working at Walter Reed. Then I met [my husband, a prosthetist who worked there] and told him I didn’t date people I worked with … and that made him try harder.

It’s kind of like a force field. I didn’t have a mom telling me what I had to do, but it’s like the universe is telling me I have to be involved.

talking with … Emily Harvey and Whitney Harris (part 1)

Emily & Whitney

Emily Harvey (back) & Whitney Harris (front)

I’ve known Emily Harvey and Whitney Harris for several years now. Interestingly, until this interview, I’d never spoken to both of them at the same time.

I first met Emily when she was deciding whether to apply to law school. A mutual friend connected us, presumably because the only person capable of giving this kind of advice to one amputee is another amputee. Whether that actually was the case or not, Emily happily (for her) just completed the Colorado Bar Exam.

I met Whitney when she became a patient model for the company that employs me. At the time, she was getting her undergraduate degree in prosthetics. Now she’s in the middle of her O&P residency in Denver. Among her many noteworthy achievements, she recently completed a climb of the Sears Tower in Chicago with her above-knee prosthesis. (To be clear: she took the stairs.) She has also figured out how to walk upstairs leg-over-leg backwards, which, I have pointedly told her, is just showing off.

Both women grew up with limb loss – a very different experience than “becoming” an amputee as an adult as I did. Whenever I speak to either one of them, I walk away with a new and different perspective on my own life. Put them both on the phone at the same time and start asking questions … you wind up with some interesting answers and insights.

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Dave: Describe the first time you became aware of the fact that you used a prosthesis and that this was somehow different from what other kids your age did.

Whitney: I’m not sure that I ever really became aware of this fact until I was in high school. It seems like the older I get, the more aware I get. When I was little I never thought anything about it. I didn’t meet my first friend without limbs until I was in college. I hung out with people with disabilities, who had, like, cerebral palsy, but I never related to that.

I don’t know, I think I have … it’s a very weird self-image that I have. Growing up, there was never a point where I was bothered or upset or thought it was blatantly obvious that I was different.

Emily: I had to think about it because I couldn’t really remember a point in time where I was like, “Oh, I’m different.” But my grandma tells me this story about when I was about 5 or 6 and we were riding in the car. And I turned to her and I said, “So Grandma, when did you get your first prosthesis?” [All laugh] She doesn’t wear a prosthesis. It was just in my head that everyone wore a prosthesis – that was just normal.

The other thing that I think of where I was aware as a kid was – I got to go to “Champ Camp” in Louisiana. It was a Shriners’ thing and it was for 3 summers. My brother was really jealous and would say that he was going to cut off one of his limbs so he could go to camp [Whitney laughs] because he thought it was so cool that I got to go to camp.

Dave: I know that as an adult traumatic amputee, your whole self-image is so disrupted by losing a limb that it can become all-consuming. It becomes who you are. You don’t have anyone there to be a buffer between you and that reality as an adult. As young children growing up with limb difference, both of you had parents who were at some level mediating how you perceived and saw the outside world. How did your parents influence how you both saw yourselves?

Emily: My mom, she treated me the same way that she treated my brother. I actually think she was harder on me sometimes. I think that was just because I was an older child. But the only thing that was really different was that I had to go to a lot more doctors’ appointments than my friends. If I legitimately had an issue with my leg, she would allow that to be a reason why I wouldn’t do something, but she wouldn’t let me use it all the time as an excuse. So she basically treated me like a normal kid. We didn’t talk about it or anything like that.

Whitney: My mom never really sat me down and talked about it either. My amniotic band syndrome, no one knew about it till I was born. So I think that kind of shell shocked everyone and kind of put them in the perspective that, “We weren’t aware so we’re just going to treat her like everyone else.” And I’m the second-oldest of 5 kids, so I definitely got treated like everyone else.

I got in trouble just like my other siblings. I got in trouble for leaving my leg in the middle of the floor when I took it off so people would trip on it. I’m very curious about my mother’s perspective, but I think she just kind of blocked it out – that I was different – and just went with it.

Dave: How did you both deal with your limb difference in your interactions with dates, as you were meeting new people in high school? Was it something you flagged up front? How did you address it if you addressed it at all?

Whitney: I don’t know that I did address it. It seems like in high school I didn’t date until later. The only difference was that if we were going and doing things and I wanted to take my prosthesis off, I would just take it off. And if anyone thought that was weird or it made them uncomfortable, I wasn’t aware of it.

In college, my college boyfriend actually told me that he was uncomfortable being with me in public because he didn’t know how to act when people stared at me. Of course, I didn’t notice but he noticed. He made it a big thing. We stopped going places and we didn’t ever hang out in public. I called him out on it and I was so incredibly offended by that answer. I think that’s been the only real time where I thought, “I kinda am different. Apparently my boyfriend thinks I’m different.” Other than that, I just never bring it up because I just feel like being without my arm and leg is such a huge part of my personality. I think people get that when they meet me.

Emily: I was horse crazy in high school and would get asked out but didn’t usually go out with anybody because I was too busy with my horse. So I didn’t really deal with it in high school, I guess. My friends and I played a lot of pranks with my leg in high school, so everybody pretty much knew about it going in.

I guess I was just kind of trying to read the situation and decide whether if it was something I needed to mention to someone beforehand, before a date. But I don’t think I usually did. Or I would just show up wearing shorts or a dress and it would just be there for everyone to see.

Dave: Emily, you’ve blogged about this. How have your perspectives on prosthetic cosmesis changed over time?

Emily: Back in the day when I was a kid, my first prostheses were kind of shaped like my other leg, but since my residual limb is so lumpy and crooked and long, it was really hard for them to get a normal-looking shape. I know they worked really hard on it.

My first foot was a SACH foot that looked like a boot. It didn’t have any fake toes or fake toenails that I could paint. I would draw lines to make 5 toes and then draw in toenails.

In ’96 we went to the Paralympics and I saw a guy who was a dancer. He was at one of the parades and he had a red and black and silver and gold sparkly leg. I went up and talked to him and I was like, “How do I get one of those? I hate the stupid pigmented-not-the-right-color-not-the-right-shape silly thing. How do I get one of those?”

When I went home and talked to my prosthetist I was like, “Bill, why didn’t you ever tell me that I could get a cool leg?” My prosthetist for most of my life growing up once we moved to Washington was an older man who had lost his leg while cutting down trees, so he was really into the old school stuff. He just didn’t even think to tell me about it.

As soon as I knew I could have a cool-looking leg I went in that direction and never thought about going back until I was working at Walter Reed and had the option to get a prosthetic leg and [one of the prosthetists there] talked me into it. He was like, “Wouldn’t it be cool?” I have worn it a couple of times. I wore it at my friend’s wedding.  She didn’t care, but I didn’t want to distract her guests’ attention away from her, so I was glad to have it for that.

But I always go back to liking the robo-look. That’s how I see myself and that’s what I’m comfortable with, so it’s weird for me to have my cosmetic leg on and go out in public. It takes away a little bit from my self-image, I guess. The first time I wore it at work at Walter Reed, someone walked right past me and didn’t realize it was me because he saw two legs and was like, “That’s not Emily!”

Whitney: I got my first prosthetic cover – I must have been in elementary school. I thought it made my leg look so bad that I was just appalled. So I never wore it. Cosmetics never bothered me. They bothered my prosthetist more because I was born with my knee being skewed. I had a little bit of bone coming off the back of my leg at a 90-degree angle. He always thought it was a really hard fit though it never actually was. So finally, when I was 16, he convinced me to get a revision and I still to this day am not sure if that was the right decision. Because now I have an actual incision adhered to the bone and nerve problems in that area. I don’t know that it was worth just the fact that now my leg looked prettier in the socket.

Walking was always more important to me. So I never knew [growing up] how I walk. I could walk terribly and think I’m the best damn walker ever. I think that’s a problem too, because I went to Shriners all of my life up until age 20, and that’s what my prosthetist told me – that I was one of the best walkers in the hospital out of all of his patients. It wasn’t until I got to O&P school and then it wasn’t until I started wearing my [current knee and a prosthetist] finally started calling me out on my gait deviations and I was just mortified. Now I’m a little bit more aware of it and I try a little bit harder to walk better. I do take a lot of pride in that but I’m not one to tell everyone I think I’m a good walker. I’d rather them tell me.

Emily: Like Whitney, I was a Shriners patient and had people consistently tell me I was good walker. Then they put me in a gait lab and put all the little stickers on [me] and showed me that I wasn’t a perfect walker. I was good but I wasn’t perfect. I was definitely more acutely aware of how I walked after going through that gait analysis.

Whitney: I don’t ever really talk about it, but I have a cosmetic arm that I really like to wear because it helps me walk better. I have a much more symmetrical gait because my torso can move better with the weight of the arm. When I wear it I like how I look with it, but I just get so much more attention that I feel like people may think I wear it for the attention aspect. It’s really incredible. And I know you probably notice, Emily, whenever I do wear it, I feel like I get obsessed with talking about it and then other people get obsessed with it and then I feel bad. And so sometimes I want to wear it for the sake of walking and making my back feel better, but then I don’t want to be the center of attention because now I have my arm on, even though I think it looks great with a long sleeve shirt.

Dave: So how often do you wear that Whitney? Because for all the time I’ve known you over the last several years I’ve never seen you wear it.

Whitney: I usually wear it at conferences. Like I wore it at the [Amputee Coalition conference] this last summer. But I definitely don’t wear it all day. Yeah, that’s really it. Or sometimes when it’s really cold and I want to keep my arm warm, I’ll put it on.

*   *   *

Stay tuned for part two of my talk with Emily and Whitney next week. Topics include Shriners hospitals, coordinated health care, and why both of them wound up in such close proximity to the O&P profession, both personally and professionally.

talking with … myself

As we chug inexorably towards Christmas Day, I post yet another interview. I threatened to do this last week, and nothing convinced me over the course of the last seven days that I had anything more productive or interesting to write about. So this week, I turned less is more over to my wife so that she could interrogate me.

As the interview was going on, I was complimenting myself (silently) on how excellent my answers were. I knew that this would be a fascinating, eye-opening post when completed.

Then I transcribed everything. And I learned that I suck.

The reason I suck, however, is truly depressing: I’m incapable of answering questions honestly. 

I don’t mean to suggest that I lie. What I mean is that I’m projecting a version of myself that accords with how I think I should be. Every answer I give turns into an excuse to reinforce my carefully-constructed, delusional worldview. For example, let me give you the complete transcript of one section of the interview that’s quoted in redacted form in the body of this post:

Cara: Let me ask you – how are you impacted by limb loss?

Dave: Well, I guess I’m impacted by limb loss in that there are certain activities that I can’t do as easily as I used to or at all. [note: not an awful start; I acknowledge that limb loss does affect me. Almost any other answer would reveal me to be a lunatic. But then …]

Cara: Like?

Dave: Like – man, you’re being very, very persistent. This is a dogged reporter. [note: Cara’s 1-word question – “Like?” – occurs only 4.5 minutes into her interview. She is not being particularly persistent. She is not being dogged. She is simply asking me to be slightly more specific than, “Limb loss has an effect on certain aspects of my life.” My refusal to just answer the question, my insistence on engaging in misdirection by turning my attention to the [not] invasive follow-up by Cara is a cheap stunt to buy me time so that I can provide the following non-answer.] Like soccer. Like baseball. I mean, can I play those sports? Yes, I can play those sports. Can I play them in a way that looks like or at a level that remotely approaches what I used to do? No. I’ll never forget a patient I once spoke to.  [Uh oh. Time to talk about someone else. Insert lengthy story to create illusion I’m revealing something about myself when I’m really not. I’m just telling someone else’s story.] He was a bilateral amputee who loved hockey. I asked him if he ever tried to play after his accident. He said, “no”. I asked ,”Why?” He said, “Because it wouldn’t be the same.” And that is exactly how I – I’ll monkey around with the kids [Observe that the moment I use the word “I”, I can’t finish the sentence. If I had, I would have said, “That’s exactly how I feel.” Even that would have been dishonest, though, since I require someone else’s story to illustrate my own emotions, which is pathetic. Now watch me launch into an exposition on the difference between engaging in low-level v. high-level versions of the activity. I feel ill even as I re-read it now.], shoot a basketball with them, throw a football, throw a baseball, because I can do those activities. But in terms of actually going out and playing the sports at a reasonably high level, you just – without a knee joint that fully functions in the way that a normal knee joint does, it’s very difficult to do those. [This is great. The question of what limitations I have is now turning into an analysis of the biomechanics of the anatomical v. prosthetic knee. If any of my readers are in the Huntington Starbucks this morning between 9 and 11 AM, come in and just punch me in the face. I deserve it.] ”  Since I know how I used to do it and the level at which I could do it, it’s somewhat maddening to me to not be able to do it as well, so I choose not to do it. But in terms of my everyday life, there are very few restrictions because in your everyday life you’re not playing soccer.” [Translated answer to Cara’s question: Yes, there are restrictions on what I choose to do as a result of my amputation. I no longer play the sports that I grew up loving and investing significant time and energy in for the first 27 years of my life. I cope with this by now pretending that they weren’t all that important to me and that my time to continue playing them had nearly run out anyway.”]

In short, if you read this interview from a starting point that assumes I’m completely full of [expletive deleted], it should be quite enjoyable. Let Cara’s grilling of me begin.

Cara: Hi.

Dave: Hi.

Cara: David.

Dave: Cara.

Cara: Blogger.

Dave: Wife.

Cara: You went around the last few weeks interviewing all of us. I thought I’d try and interview you.

Dave: Is there a question coming?

Cara: I actually chose to read those blogs –

Dave:  – Thank you! It’s nice to know that my wife is reading the stuff that I write.

Cara: Yeah, not a problem. I know that you also showed a bit of resistance to being interviewed, using the excuse that you basically interview yourself on a weekly basis. But when I read the interviews with our family, I felt that at least in my case, I didn’t have a whole lot to say in terms of how your limb loss impacted me. I thought that maybe there would’ve been an expectation of there being real negatives to being with someone who’s an amputee. I don’t know if you would agree, but interviewing people who love you and who were part of it from the start – you didn’t get any of that feedback.

Dave: Well I think there’s no question that if I had interviewed a random 6-year-old, a random 13-year-old, and a random person of your … vintage, that I would have gotten very different answers, particularly if they hadn’t lived with limb loss at all. And obviously, depending on the person who has limb loss and the impact it has on their life, if you talk to somebody who’s much less able to live a full and unrestricted life, I think the answers you’d get from the family members would be very different. So I think that you’re right that at one level, it’s limiting to go and talk with family about it, because obviously their experiences are intertwined with mine.

Cara: Let me ask you – how are you impacted by limb loss?

Dave: Well, I guess I’m impacted by limb loss in that there are certain activities that I can’t do as easily as I used to or at all.

Cara: Like?

Dave: Like soccer. Like baseball. I mean, can I play those sports? Yes, I can play those sports. Can I play them in a way that looks like or at a level that remotely approaches what I used to do? No. Since I know how I used to do it and the level at which I could do it, it’s somewhat maddening to me to not be able to do it as well, so I choose not to do it. But in terms of my everyday life, there are very few restrictions because in your everyday life you’re not playing soccer.

Cara: One of the things I remember when you woke up from your accident, though I praised you for it – I think you evade the question at times – you woke up and you were a 27-year-old disabled person. I want to ask you the question again: what do you experience in terms of limitations as a result of you losing your leg?

Dave: The short answer is I don’t think it profoundly impacted me at the end of the day. The reason for that is I was just getting to an age really where you sort of settle into your professional routine. And since my professional routine was never dominated by physical activity but was always dominated by sitting behind a desk, I was fortunate enough that what I did everyday really wasn’t significantly impacted by the fact that I no longer had my left leg. Now, that’s not to say that when the prosthesis didn’t fit and I had breakdown and I needed to spend a day at my prosthetist’s office, that I wasn’t frustrated and that it didn’t impact my level of happiness or focus in some way. But the flip side of that is if you look at what I was doing before the accident and what I was doing after the accident, I don’t think they were all that different. The only difference was in those high-end activities.

Cara: Ok, which you just chose not to do. Would you say that you just made concessions? Do you miss the fact that you’re not playing team sports?

Dave: Absolutely. I mean, I block it out of my head but –

Cara: Clearly.

Dave: – do I miss it? Absolutely.

Cara: How does that make you feel?

Dave: It doesn’t make me feel anything because I’m very good at compartmentalizing things that would otherwise affect me emotionally. That’s probably a strength professionally. It’s something that has been the topic of much discussion between you and me over the last 20 years.

Cara: Are you disabled?

Dave: I think the words you used when I interviewed you were actually perfect. I think the exact phrase was that I considered myself an “able-bodied disabled person.” And I think that’s actually 100% right. I consider myself disabled as a matter of classification, but in terms of how it impacts me day-to-day, I don’t really believe I have any limitations.

Cara: Well that goes back to the emotional distance and heady intellectualizing that you do. But you would say that you are, in fact, classified disabled – technically. Are you a disabled person?

Dave: I think as a matter of classification, yes, I’m disabled. But to me, that’s effectively a technical distinction. I know plenty of able-bodied people who I think are more disabled than I am.

Cara: Absolutely. You seem uncomfortable – there seems to be a connotation to you with the word, “disability.”

Dave: I think any person who has been able-bodied before, I think you resist the label, “disabled.” Does that mean that you’re not disabled? No. But there’s different ways – maybe I’m playing semantic games here – but I think legally, through a technical definition of disability, and most definitions of disability include permanent loss or use of a limb, I think I’m disabled. But in terms of functional capacity, I don’t think I’m in any way disabled.

Cara: I always sort of wondered, really, how does it feel to be someone who takes a leg off at night?

Dave: I don’t think about it. It’s just something I do every night. Take off my pants. Take off my shirt. Take off my leg at night. It’s just another thing I have to do.

Cara: I would like to get some blunt, knee-jerk reactions from you.

Dave: Ok.

Cara: Yeah, I’ve been trying this, by the way, for 15 years and 2 weeks. You had someone come visit you very shortly after your accident and it was someone who was an amputee.

Dave: I have no memory of that.

Cara: You don’t remember this man coming in and saying he wanted to talk to you about what it was like to be an amputee?

Dave: [laughing] No.

Cara: You were very angry. You refused to talk to him. You wouldn’t let me let him in. It was very out of character – able-bodied or disabled – for Dave McGill. You were as irrational and emotional as I’d ever seen you.

Dave: I don’t remember it. If that person happens to read my blog, sorry. At one level, it doesn’t surprise me I reacted that way. If I had to go back and try and reconstruct what I was thinking at the time, my guess would be that I didn’t want someone coming in and telling me what my life was going to be like. I probably had in my own head already at that point – because I was pretty maniacal about it – a set of goals and a set of expectations. And I wanted to do it on my terms, not on anyone else’s.

Cara: You, you knucklehead, you have said at times that you would do it again, you wouldn’t change a thing. God’s honest truth, for real?

Dave: God’s honest truth, for real. This was the first time [in my life] that I faced a real significant adverse event. And … you know, you always wonder how you’d respond to that. And I never would have guessed that I would have responded the way I did. But I came out of it feeling – it was one of the few things in my life that I can say unequivocally I was really proud of.

Cara: I don’t know what your deal is really. But I’m really glad that –

Dave: That my psychosis appears to be permanent?

Cara: No. I don’t know. Any loss experience has been shown to require a stage-by-stage grief process.

Dave: Ok, Ms. Kubler-Ross.

Cara: You bypassed it.

Dave: Maybe I went through it at blinding speed. [laughs]

Cara: You bypassed it. But I also think that, in conclusion, the reason that you are the way you are is totally because of me.

Dave: I have no doubt, Cara, that you are the Rosetta Stone of my post-amputation existence. And that everything I have become and will ever become is driven by your wonderfulness, and beauty, and sheer radiance.

Cara: Yeah, it’s true actually. I didn’t really want you to go to a depressing place.

Dave: Do you think it would be good for my readers? Maybe I should do a series of posts after I check myself into an inpatient facility. That would be fascinating, wouldn’t it?

Cara: I don’t think you can. You’re either that disconnected or you really are that at peace. [Changing subjects], I also do know that you’re very physically conscious. And that’s a consistent theme for you, from the moment when you came home. You were very, very critical of your gait, how your pants looked, how your shoes looked. I think you focused a tremendous amount of energy on the appearance of it all.

Dave: Yes.

Cara: And is that related to your discomfort with or denial of being disabled?

Dave: No question.

Cara: So, are you really at peace with this?

Dave: My motivation from day one was about masking it. And I don’t mean masking it in that I didn’t want anybody to know that I was disabled. I mean masking it in that I didn’t want them to think of me as disabled.

Cara: I think you view disability, or the term, or the classification as negative.

Dave: I think you’re right.

Cara: I think it’s a big issue for you.

Dave: You’re right. My expectation is to not be considered disabled. That’s why I said your description of me as an “able-bodied disabled person” I think hits my conception of myself right on the head.

Cara: If and when there comes a time that you’re not able to pull that [self-conception] off, we’re going to have to do a new interview. I’m just saying I think there’s something sketchy about [your thought process].

Dave: Well, I’m glad to know that there’s an element of danger around my response to limb loss –

Cara: This isn’t danger or intrigue, this is sketchy.

Dave: Well. Call it what you will. It will make a fascinating series of posts if that day ever comes. And God knows, I’m always looking for ideas, so a good psychic break in the future might be exactly what the doctor ordered.

Cara: It might be. I can keep questioning you and make a psychotic break occur if your readers would be interested in that.

Dave: My readers would be fascinated by that. I suggest that we plumb the depths of that immediately. We should have started there.

Cara: [in hushed tone] Because I can break you.

Dave: Perhaps. If anyone can you can.

Cara: Did you ever find your shoehorn? Because I think the most displaced you have felt [since losing your leg] was since that big metal honker has been missing.

Dave: I’m happy to report that when I was visiting our headquarters [last week], I was provided with a new shoehorn. Many thanks to Coryn.

Cara: Thanks Coryn. Appreciate it. It was like he had lost a child in a mall.

Dave: It was extremely traumatic.

Cara: Thanks for letting me interview you, Dave.

Dave: It was my pleasure. Thanks for being such an insightful questioner.

Cara: Well, the insight has to come from somewhere.

talking with … the wife

It has been the Season of the Interview here at less is more. We started by talking to my 6 year-old daughter. We followed that up with my 13-year-old son. It wouldn’t seem right if I didn’t close the triad out by speaking with my wife, who has been with me before, during, and after the December night 15 years ago that sent our lives in a decidedly different direction. (My 10-year-old, I would like to point out, has been remarkably nonplussed by my decision to not interview him. For those of you wondering if I’m making some kind of implicit judgment about the respective quality of my 3 children by interviewing the youngest and oldest only, I did that only  because I didn’t think I’d get radically different answers from the 10 and 13-year-old. Yes, apparently I feel the need to indirectly answer to a 10-year-old who himself doesn’t care whether he’s interviewed because, like all modern parents, I’m terrified that my decision is inflicting untold psychic damage on him that will result in years of therapy when he gets older.) With that tortured explanation behind us, let’s dive into a discussion with my wife.

Dave: So, love of my life, angel of my eye –

Cara: [makes gagging sound]

Dave: – I know so many people whose boyfriend, girlfriend, husband, wife, partner, left them after their limb loss. After I lost my leg I obviously felt very differently about myself. But you never treated me differently, even though I obviously looked like a different person and couldn’t function the same way. Why is that?

Cara: I was in a strange position because I was told that you had died, you were paralyzed, you had brain injury you had … It didn’t matter to me. The fact that you came out of this, I didn’t see you an ounce different. I don’t mean to sound silly, but there was no physical … I guess I never was really passionately in love with you based on any sort of physical characteristic –

Dave: You’re not the first person who has felt that way, incidentally.

Cara: No offense, missing a limb – to me? I saw your eyes, I saw your face. I saw your – it was really, to be honest with you, completely insignificant to me. I hope I don’t minimize or demean it, but it was completely insignificant for me.

Dave: Did you know anything about limb loss before my accident?

Cara: I had no frigging idea. In fact, what I found so uncanny was, when you had woken up you had said to me – this was after days [in the hospital] – you had said, “Did they take my leg? And I said “Yes.” And you had gone back into la la land. I had enough time to go home and shower, so it must have been awhile when you came back out [of unconsciousness], and when you did, it was, “Get on the phone. I gotta go to rehab. There are prosthetists. Find a prosthetist.” I couldn’t even say the word for 4 years. I had absolutely no idea. I don’t remember [having ever] seen anyone with an amputation or disability like that. If I did I couldn’t tell you. I had no frigging idea.

Dave: What do you think the ideal resources are that should be available to a spouse in that situation?

Cara: I think that the most frustrating part for me is actually that, although we had a great hospital/trauma center, we were channeled into, “Well, you go to a rehab facility next.” And that’s not to say you didn’t go to one of the best in the world, but you were a 27 year-old active male who was sitting in a rehab facility being taught wound care and how to walk around with crutches and carry a bowl of milk with a bunch of diabetic elderly patients. That place was so mortifying that if it didn’t motivate us to find out what the next step was, I don’t know what would.

I think if there’s ever anybody – anybody, I don’t care if they’re 90 or 16 – if they’ve experienced traumatic or planned limb loss, there has got to be something within the discharge planning or some sort of social work planning where there’s some sort of education on this. Because truthfully, I think it was your uncle and some ancillary people who provided me with information. I had no idea what to do at that point. I wasn’t sure whether you were going to be in a wheelchair or running a marathon.

Dave: You also had to make the judgment on above the knee versus below the knee for me. You had doctors and family members giving you opinions about what to do. How did you make that decision?

Cara: I was told multiple surgeries, reconstruction of the knee. I’m a math person – about a 60% statistical rate of success on multiple surgeries on the knee. And what really struck me was a very likely possibility of a then-scheduled amputation of the knee if those surgeries didn’t work. When there were multiple surgery potentials and [the possibility] for you to have to be conscious and know that you’re going to lose another part of your body … it was a no brainer. I was not going to allow you to experience what I was experiencing. I didn’t want you to be conscious and to be told, “you’re going  to lose your knee tomorrow.” So I figured, “Just go for it.” [pauses] Sorry.

Dave: What was the absolute lowest point for you as a spouse after my amputation?

Cara: [long pause] I am a completely fatalistic person. I didn’t have children. I was 26 years old. My entire life had already been about you and me for over a decade at that point. If you had died, I would’ve jumped in front of the next car. I’m not ashamed to admit it. You took a turn that was so extremely positive, almost maniacally bizarre, in a forward direction that I didn’t permit myself really to have a low point, because I didn’t have to cheer you. I just had to go along on the ride with you and stay positive.

My low probably didn’t come until so many years later, but that’s only because when I allowed myself to feel anything, it was pity. It was pity in a way like, “Why did this have to happen to someone it didn’t have to happen to?”

The lowest of the low, I guess, honestly had to be during the trial. They had to put a value on what had happened. I’m not a lawyer and I don’t like the legal system and they put a value [on you]. And they settled. And my lowest probably had to be that. Accepting a value to what had happened. You have a number and you look at that in terms of what your life is and could be and was and all that – the principal of the thing – really put me in the lowest of the low, because how dare they?

I can’t answer these questions in a way that maybe somebody would want to hear it answered. This isn’t me. It’s beyond me. This is …  I can’t explain it to you.

If you are a human being who loses a body part to a trauma, the level of need to adapt, accept, go through stages of grief is just so high, so incredibly high, that I don’t know how people do that. I love when cancer patients or you say, “You do what you have to do.” Bullshit, you don’t do what you have to do. Dave did what he has to do. I don’t do what I have to do.

If I was diagnosed with cancer, I don’t know that I would do what I have to do. Somebody with limb loss who embraces it like the people you’ve met and that you’ve encountered, God bless them. Because they are the ones really, I think, who ultimately dictate how someone like me – a wife – or someone like kids – their children – relate to it. Bottom line. Because I don’t know how I’d feel going to bed with a man with one leg if it wasn’t presented to me the way it was presented.

Dave: You talked about the stages that you’d expect someone to go through when dealing with a loss like limb loss. You and I have talked in the past about the fact that I never really did that. Do you think it’s inevitable that at some point I’ll crash? Is that something you fear? And did my skipping over that process prevent you from experiencing what you should have/were supposed to experience?

Cara: I would have said yes, as every psychology theory would tell me that there’s going to be an inevitable crash. But we just celebrated our 15th year [post accident]. You’re not crashing. I don’t want to speak for you – is it healthy, is it right, is it useful? I’m not in any position to judge

I think, honestly, something happened. I think that there was something intervening, whatever you experienced when once you became unconscious to when you woke up, that this accident changed your life. And it changed your life, at least by your own words, whether you remember them or not and from that point forward, in a proactive kind of way. You’ve even made comments, which I swear to God I wanted to cut your other leg off, to say that “I’d do it again. I’d help someone again.” I mean you really feel that you’re a better father and better person having had this experience.

Having said that, I don’t think there’s going to be the ultimate crash. I think that you see yourself as a fortunate, able-bodied-disabled human being. And where you threw your emotion and passion and pain and all those other things that seem to be lacking is in your work. I mean, you were not meant to do the career path that you choose. You weren’t meant to sit on the Amputee Coalition board. None of this stuff was supposed to happen.

In terms of me, I ‘m so generally screwed up and fatalistic anyway that your accident just reaffirms my general worldview. So it actually helps me to continue being the brooding, dark person that I am, and say, “See? Even the good people who help out get hurt.” So it didn’t really hinder my psychological state, which had always been pretty dark and fatalistic. I mean, I yelled at you right before you got out of the car not to get out of the car. And I had a lot of anger about that, quite honestly, because I really like to control everything.

But you didn’t deprive me of any experience. I went through it.

Dave: You were the only witness to my accident and you’ve been very honest about how traumatic that was. You’ve told me how when, years later, you were driving and had to go past a car crash, sometimes you’d –

Cara: – throw up –

Dave: – right, open the car door and literally throw up onto the road while driving. If you had to go back and ask yourself what you should have done for yourself or what services should have been available for someone in your position, what would your answer be?

Cara: I can give you party line on this and say I should’ve gone to some support group. When I was in the hospital day in and day out, everyone from the discharge nurse to the vascular surgeon – they just did vitals, did this, did that, sent you on, we moved on, we went to rehab – I was nonentity. I have to be honest, this is like a death. Everybody deals with grief in different ways. In my case, I was very very young. There was nobody who asked me if I was ok. There was nobody who asked me what I saw. There was nobody. [We had family there], but there was nobody. Nothing. No resources. No psychological education. No support group. Even after the fact, they taught you how to brush your teeth and how to use your crutches in rehab, but what the hell was I supposed to do?

I didn’t know how to talk to you, to help you, to tell you you’re ok. It’s really sad. It didn’t occur to me until you brought it up. There was nothing.

Dave: One question is, “Do the resources exist?” If they do, the next question is, “Why isn’t there access to them or knowledge about them?

Cara: I have no idea. My guess would be that when you’re in a hospital, it’s a medically-based model. Even if you move to discharge planning in a hospital, it’s still based on patient capability and concerns. I think ancillary services just aren’t part of the system. It’s patient oriented. But I just don’t know that the system is set up to focus on [family members]. Nobody who’s in the position of trying to support a patient – a wife or a spouse of someone who’s had their leg cut off – is going to go, “You know what, I’m going to find a support group for myself.” It still doesn’t occur to me to go, “Wow, I wonder if there are other people I can talk to about what it’s like to live with a man who is an above-the-knee amputee?”

Dave: Is that because of the system or because of you?

Cara: I think it’s too far down the totem pole of necessities to close off or manage limb loss [at the family level]. First and foremost it’s the patient and patient care and prosthetic work. And then it’s psychological well-being of the patient. Then perhaps it’s marital issues with the patient and family issues with the patient. Then maybe later it’s [finally] an individual person who’s been touched by limb loss. But that’s so far down the chain. Unless you’re unfortunately put in a position where the first few steps didn’t go well, you never get to that bottom step. Why would you? You’ve got an active healthy kid running a race, or a great husband doing their thing, or a wife who looks beautiful in heels even though she has one leg – you don’t go to that last step. You don’t go there. And I don’t know if I’d feel better sitting in a room with a bunch of women whose husbands lost a leg. You would have to speak to it – you should interview yourself next week.

Dave: – I’ve been doing that for more than a year in this blog already. That’s all I do every week!

Cara: You’re making limb loss the focus, obviously. Limb loss isn’t the focus for me. It’s not about your lost leg. I’m not really dealing with limb loss as the wife of someone who lost a leg. I, Cara, am not – it’s really truly a non-issue. And I’m not in denial. It’s a non-issue. Did it reinforce my bitter worldview? Yeah. Did it piss me off? Yeah? Was I mad and am I still mad? Yeah. But it’s a non-issue. I don’t … I don’t know. For all I know, we would have been divorced long before if you had remained able-bodied. Because whatever this thing did to us put us in a place where nothing else could really be worse.

Dave: That was part of my plan.

Cara: Well then it worked. Now I feel too guilty to leave you because you have one leg. And you’re bald.

Dave: Imagine a future in which amputees could wear a prosthesis 24 hours a day through osseointegration or some other mechanism.

Cara: That’s creepy.

Dave: Why?

Cara: I don’t think that anyone should wear their leg for 24 hours, if I can use that for a funny phrase to describe how somebody’s supposed to live their life. I mean, nobody should work 24 hours a day, nobody should be on their feet 24 hours a day. So in a funny way, the whole “take your leg off” thing has kind of become a joke, but kind of a testament to how life should be. I’m one of these 24-7, balls to the wall, I can’t sit down for 2 minutes. And when the leg does come off, there’s a forced stop.

Dave: You may have created a new bumper sticker.

Cara: That’s honestly what I’m trying to say. You used to say this even before you lost your leg – “It’s Saturday morning. You don’t need to be doing anything. Just stop!” And I think what the accident did for us was it made a forced stop. I think your leg coming off, however many hours [a day] it is, forces a stop. I really do think that, ironically, if you “take your leg off” you’re probably going to live a whole lot healthier than someone who doesn’t take their leg off, whether able-bodied or not. So there’s my little –

Dave: – moment of zen –

Cara: – moment of zen.

Dave: What’s the most obnoxious way I use limb loss to avoid responsibility?

Cara: Your lamest thing is you downplay it, try to make it sound like it’s no a big deal. You highlight it. All the time you highlight it. I’m not minimizing it. But my perspective has always been, “It’s Dave.” You make jokes around it. You’ve become the guy who’s bald with one leg. And I think the lamest thing about it is like, “Dude, we know! So what?” Pick another joke.

Dave: But I have very little good material other than my leg.

Cara: But I think it comes down to really, really, what someone’s identity is. And I think you’re bringing up a really good point. And I’m sure that if I read your blog religiously –

Dave: [outraged] You don’t read my blog religiously?!?

Cara: No, honestly not. But I will say I think it’s your identity. I think for you, your identity is a one-legged bald guy.

Dave: If I can’t get you to read my blog every week, what hope do I have for rallying the amputee community towards my ultimate goal of world domination?

Cara: I live the blog, I don’t have to read the blog. I know the blog content, dude. I know what you’re going to say before you say it. I have a lot of questions I’d like to ask you. Your asking me questions is seeking information that I really can’t answer.

Dave: Well if you’re nice to me this week, maybe I’ll let you interview me. But that’s an awesome responsibility, taking over the reins of this blog.

Cara: I think the questions that you ask should be turned back on you. I think it would be very interesting.

Dave: Do you?

Cara: I do. I might even read it.

talking with … a 13 year-old

Last week I interviewed my 6 year-old daughter. This week, we move up the age scale to my 13 year-old son, Max, to get his perception of the world of limb loss.

Dave: When you were growing up, did you talk to your friends about the fact that I only had one leg?

Max: Yeah. it started in like first grade. You came into my class and you talked about it and you flipped [the prosthesis] upside down and stuff like that. From first grade until now, everyone still calls it a robot leg. And teachers sometimes refer to it.  They’ll say, “Oh, doesn’t your dad have a prosthesis?” And I’ll say “yes.” And then everyone’s like, “Oh, what’s a prosthesis?” I’ll be like, “Morons!” ‘Cause they have no idea. They still call it a robot leg or a metal leg or a computer leg or artificial leg or fake leg and all that stuff.

Dave: So you call them morons?

Max: Yes.

Dave: Are you making lots of friends this way at school?

Max: Absolutely.

Dave: Do you think I can do things that most other parents do?

Max: You can balance a drink on your foot, which is pretty cool, if you flip it foot upside down. You can basically do the same things. You’re limited at a point. Like you wouldn’t be able to breakdance with a knee like that. But you could still coach baseball like you do. You could still play basketball with us. You could generally go on the trampoline. You could go in the water if you wanted to, if you were to get a [water] leg. You can still basically do everything.

Dave: Some people would say that I couldn’t dance before I lost my leg.

Max: Well that’s because you’re related to your dad.

Dave: That’s an excellent point. How do you know that my dad can’t dance?

Max: I saw your wedding video. He’s definitely one of the lives of the party. But not the highlight. It was in the “not top 10 plays” you could say.

Dave: What’s your favorite thing we do together that involves me using my prosthesis?

Max: Does football count?

Dave: Yes.

Max: I like playing football. I like when we play basketball. I like – oh it was really funny the other day, when the cats were chasing the cat toy. They were just about to jump, and you dove on the ground and started rolling around, scaring all the cats and lifting your legs up and batting at the cat toy. That was fun. [note: this is true; there is even a video of the event showing me pretending to be a cat and batting away a bright red toy – you will not see said video … ever.]

Dave: When was the first time that you knew my leg was different from other people’s?

Max: When I was in kindergarten and we started going to the track and we started running around. Ever since kindergarten you would always show me cool tricks with it. But when we went to the track and you would run, there was always a certain way you would hop onto the leg that looked different from most other people running because you would spring up almost, which was different. I never really knew when I was that age that you got hit – I just knew it wasn’t there. And most of my friends thought it was really cool, so I just went with it, I guess.

Dave: What do you think the hardest part for me is of having a prosthesis?

Max: I know when you play basketball that when you shoot you shoot on one leg. That looks difficult. When you run, it’s also hard because your running leg isn’t computer-powered, so you have to lift it up.

Dave: What would your friends ask you about my leg when you were younger?

Max: They asked how it happened and thought it was really cool.

Dave: What did you tell them?

Max: Once I was old enough I said you got hit by a car and would tell the story. Then when it was a robot leg I’d be like, “Yeah, I guess -”

Dave: Am I supposed to call you a moron now? Because you just called it a robot leg.

Max: No, when they said it was a robot leg. I would be like, “yeah, I guess it’s a robot leg.” And I just started correcting them, I guess, when I got older. Like we talked about it in health last year, and they were like, “Oh yeah, doesn’t your dad have a robot leg?” And I’d be like, “Prosthesis. Morons.” [laughs] The sun is slowly starting to set. I can see it going down.

Dave: Your attention span is almost as long as Caroline’s. What would you want to see the next generation of prosthetics do?

Max: Ummmm. There should definitely be one you can dance with. ‘Cause that would be the worst thing that would ever happen to me, if I were somehow to lose my leg and I could just never move like that again. That would really suck. Something where my leg rotates, instead of [back and forth], it would rotate all the directions, like a ball and socket joint so that it would move around. One where your toes move too. That would be really cool. And also, if there’s one – they should come up with one, it would be so expensive, a new permanent one that you don’t have to take off. One that – I know they have one already that connects to your [bone].

Dave: Yeah – osseointegration.

Max: Yeah – they should do that, but somehow take skin and cover the leg to make it part of you, I guess.

Dave: If you had to wear a prosthesis and you had the choice of a high-tech one with a noisy motor or one with no motor but that was quieter, which would you choose?

Max: I wouldn’t care about people knowing [I wear a prosthesis because of the noise], because you can’t really change it. It would be like if someone said to me, “You have two colors in your hair?” And I’d be like, “Yeah. And?” You can’t change what already happened. Next question. Let’s start wrapping this up.

Dave: If you had to pick a design for your socket, what would it be?

Max: I would definitely want to do The Flash logo, ’cause I always loved The Flash. Maybe something funny. Or maybe I’d like to make my own. I like the yin yang symbol.

Dave: That’s deep. You know what the yin yang symbol stands for?

Max: It’s like the good and bad in you, or something.

Dave: I think we should look it up on Wikipedia.

Max and his younger brother, Jackson, who has come into the room: [simultaneously] Oh my God.

Jackson: [to Dave] You flipping blogger.

Max: [continuing] Or, I always wanted a tattoo of this too, but it probably wouldn’t look as good. I want a bar code, like a bar code tattoo. But if you could somehow get that into a tee-shirt.

Dave: You’re interested in commodotizing yourself?

Max: Sure. Yes.

Dave: You want to be something that could be bought and sold?

Max: No – I think it looks cool. Stark Sands had it in American Idiot [on Broadway].

Dave: So you want it because all the cool kids are doing it?

Max: No – I just want it because it looks really cool.

Jackson:  [interjecting again] All the hipsters?

Max: Shut up, Jackson. You’re not involved, so stop talking.

Dave: [reading from Wikipedia] By the way, yin yang is described as how “polar opposites or contrary forces are interconnected and interdependent.”

Max: K, that’s a different language, so you might as well not say it.

Dave: It’s about duality. Do you know what duality is?

Max: No – I would also get the American Idiot logo, the heart grenade.

Dave: Before you give me any more examples, can we safely conclude that you would have about 10 legs worth of material?

Max: Yeah. I would get a –

Dave: Don’t let me slow you down here.

Max: – Superman logo. I like the Superman logo. I’d like a skull. Not a cheesy skull and crossbones, but a dark sketch would look kind of cool.

Dave: You realize that about a third of this interview has been taken up with just your ideas for prosthetic sockets.

Max: Not even close, but ok. Yes. Next question.

Dave: What question should I have asked you that I didn’t ask you?

Jackson:  [overhearing question from the next room and shouting] Good question!

Max: [laughing] Shut up, Jackson! Because I got mad that Caroline was being interviewed and I wasn’t?

Dave: No that has nothing to do with it.

Max: Because you needed someone to interview?

Dave: I was hoping for someone more articulate than Caroline.

Max: Ohhhh, no.

Dave: Do you think you’ve achieved that?

Max: I think with some questions I did. Some questions I tried to act really smart, like with the ball and socket joint. See what I did there? And when I said, “Let’s wrap this up,” like it’s December, with Christmas gifts: “Wrap it up.”

Dave: So how would you rate your performance so far? With “A” being really good and “F” being quite poor.

Max: Six Christmas trees out of ten Christmas trees.

Dave: So you just gave yourself a failing grade.

Max: Yes.

Dave: That’s a 60.

Max: I know. Because you’re basically putting it on me. You’re like, “Oh, you’ve got about the attention span of Caroline.” The sun is setting, Dad! It’s going down!

Dave: [laughing] You do understand you’re illustrating my point by changing subjects this way.

Max: It’s going down. I can see it now.

Dave: What are you going to do after you’re done with this?

Max: Going on the trampoline and beating up Jackson.

Jackson: [overhearing from the next room again and shouting, gleefully] That’s me!

Dave: Is there anything else I need to be asking you or are you just dying to go outside?

Max: I’m just dying to go outside.

Dave: So I’m keeping from something that’s more desirable than this.

Max: No, this was fun. Thank you. Merry Christmas!

talking with . . . a six-year-old

This week I interviewed my six-year-old daughter, Caroline, to obtain her perspective on limb loss. The interview lasted just under 30 minutes. I had her attention for at least half that long. One thing you can say about interviewing someone this age: they don’t waste many words. 

Dave: You know how I lost my leg?

Caroline: Yes, I do.

Dave: How?

Caroline: You got ran over by a car.

Dave: What do you think about that?

Caroline: What do you mean?

Dave: Do you have any reaction to that?

Caroline: No.

Dave: What do you think about my prosthesis?

Caroline: Well, I’m upset that you can’t run.

Dave: But I can run.

Caroline: Yeah, but you have to take off your leg.

Dave: You mean my regular leg?

Caroline: Yeah.

Dave: So you’re upset that I have to change into my running leg to run?

Caroline: Yes. If someone was chasing you – let’s say a shark was chasing you – and you were wearing [your walking leg], you wouldn’t be able to run.

Dave: But do I wear my leg in the water? Would a shark ever be chasing me with my leg on?

Caroline: Well, you’re not really a fast swimmer, no offense.

Dave: Does that have anything to do with prosthetics?

Caroline: No.

Dave: What’s the thing you hate most about my prosthesis?

Caroline: You can’t run or swim with it.

Dave: Do you live in fear that I’m going to be chased by someone?

Caroline: No.

Dave: What do you like about my prosthesis?

Caroline: Nothing much. Well, I only like [tapping on prosthesis] that it’s hard, so like, if I hit you, it hurts my hand and not yours. See? [pounding on prosthesis] It hurts my hand, not your leg.

Dave: Do you like the designs they can put on the socket?

Caroline: Yeah. I guess. Yeah. [picks up digital recorder, solemnly intones] Yes. [changes subject] How many batteries do you have now? [checks power left on prosthetic battery] Five.

Dave: Why do you like checking my battery?

Caroline: Like this? [presses button to activate LED power indicator]

Dave: Yes, like that.

Caroline: Because.

Dave: Because what?

Caroline: It’s fun.

Dave: Why is it fun?

Caroline: Because. I don’t know. I just like doing it.

Dave: Do you tell your friends I have one leg?

Caroline: Well, Mary, she’s like, “Did your dad get his leg back?”, but I’m like, “Mary, he’s never going to get his leg  back,” and she’s like, “Ohhhhh.” Wait, I’m going to be in your blog?

Dave: Yes.

Caroline: Yaaaaay! [conspiratorially] Don’t interview the boys.

Dave: Do you think I can do most things that other dads do?

Caroline: Yes. You wanna know what?

Dave: What?

Caroline: I knew you were going to say that. Well, you could walk like other dads. You could jog a little. You could hop on your foot. And one more thing. If you lost both legs and you wore crutches, you’d need two prosthetic legs. And when you take these prosthetic legs off if you had them, the crutches – you wouldn’t even get to step, because you have no feet. So look – pretend this is you [pantomimes using crutches as a bilateral amputee] and the crutches are right here. I can’t touch [the ground] ’cause [my] legs are so small. If you were taking your legs off, then you won’t even be able to move. Only the crutches, so like you can move one crutch forward, two [pantomimes balancing torso between crutches with no feet touching the ground], but that’s going to be hard.

Dave: That’s why a lot of people who are missing both legs also have a wheelchair, so when they take their legs off, they can still get around.

Caroline: That’s true.

Dave:  What’s your favorite thing that we do together that involves me using my prosthesis?

Caroline: What about [getting lunch at the diner]?

Dave: Well, what about [getting lunch at the diner]?

Caroline: We go.

Dave: Yeah, but do I need a prosthesis to do that?

Caroline: Yes. Because, well, you’d be in public, and you’d be really cold with your leg off.

Dave: So you see a primary benefit of my prosthesis being the fact that it helps keeps me warm?

Caroline: Well, yeah, kind of. ‘Cause if your leg was off, you’d just have your leg and your shin’s not here. So you’d be really cold, cold, cold.

Dave: Why do you like screwing the valve in and out of my prosthetic socket?

Caroline: It’s entertainment. Oh – I have another thing you can’t do. You can’t do a back bend or a kickover. [demonstrates]

Dave: That’s true. But I couldn’t do that before.

Caroline: I know, but I could. Oh, my neck!  Are we almost done?

Dave: When’s the first time you thought your dad’s leg is different from other people’s?

Caroline: Never.

Dave: You never thought that?

Caroline: No.

Dave: Why not?

Caroline: Because, I was very smart. I don’t know, I just know that you always had this leg [slaps prosthesis].

Dave: Have you ever met any kids who wear a prosthesis?

Caroline: No, but I did see someone who wears a prosthesis. She was a girl, and she had a pink one. She has curly black hair.

Dave: What did you think when you saw her?

Caroline: Nothing. Well, she had a different robot leg from you. She had a skinny part over here [points to my prosthetic shin], instead of that battery.

Dave: Yes.

Caroline: She does, right?

Dave: Yes.

Caroline: I didn’t think that was actually true. Okay, ask me some questions. I’m listening. Ask me! Please ask me. Ask me some questions, dude. [yes – she really said “dude”]

Dave: What do you think the hardest part of living with a prosthesis is?

Caroline: I think it would be . . . you tell me.

Dave: I’m asking you what you think.

Caroline: With the leg on?

Dave: Sure.

Caroline: Swimming. That would be the hardest thing. If you put an electronic in the water, it would die.

Dave: That’s true.

Caroline: Would your leg die?

Dave: This one would, though there are some new ones out there that are waterproof.

Caroline:  Niiiiiice! You know there are waterproof iPods? I want one.

Dave: What do you think the coolest thing about wearing a prosthesis is for someone who wears it?

Caroline: No idea.

Dave: Do you think it’s different for a girl to wear a prosthesis than a guy?

Caroline: No.

Dave: Do you think it’s different for a kid to wear a prosthesis than an adult?

Caroline: Yes. ‘Cause they’re kids. ‘Cause you look smaller, and if they didn’t have any sizes for kids, you’d be in trouble.

Dave: That’s true – so assume they have sizes for kids, which they do.

Caroline: No they don’t.

Dave: Yes they do.

Caroline: C’mon! Oh – Dad, how about you tell me about that girl [you met who just got a new prosthesis a few weeks ago?] How did that girl get hurt?

Dave: Cancer.

Caroline: [Whispers] Cancer. [Shouts] So she needs a new leg?

Dave: If you have certain kinds of cancer, doctors have to amputate your leg or else you’ll die.

Caroline: Did you cut her leg off?

Dave: No, I didn’t cut her leg off.

Caroline: Ohhhh! [Annoyed] I wanted to see. Did she speak English?

Dave:  Almost none.

Caroline: What did she speak that’s correct?

Dave: [laughing] English isn’t correct. There are lots of different languages. In English she was able to say “hi” and “thank you”.

Caroline: That’s easy. “Hi” – wait, was she Spanish?

Dave: No, she was from Africa.

Caroline: I thought she was Spanish. I can count to 13 in Spanish.

Dave: You don’t have to show me.

Caroline: [ignoring me, counts to 13 in Spanish, then pants and barks like a dog.] Do I actually sound like a dog?

Dave: Not really.

Caroline: [tries again.] Does that sound like a dog?

Dave: No.

Caroline: Wow. That is hard.

Dave: Are you glad that I wear a prosthesis?

Caroline: No.

Dave: Because …

Caroline: You shouldn’t have one.

Dave: What should I have?

Caroline: Well, the best thing to have would be a leg like these! [grabbing her own legs]

Dave: Right. And if you can’t have that?

Caroline: Well … you could have the running – they should invent!

Dave: What should they invent?

Caroline: You guys should invent a walking-running leg. So you could run whenever you want and walk whenever you want. So you don’t have to change legs.

Dave: That’s a very good idea.

Caroline: It is.

Dave: What do I complain about most when wearing a prosthesis?

Caroline: Nothing.

Dave: Nothing?

Caroline: Yup. Why, what do you think?

Dave: I don’t know. I’m asking you!

Caroline: I think you complain when you lose your shoe horn.

Dave: That’s correct, I do. How much do you think a prosthesis costs?

Caroline: One hundred bucks.

Dave: One hundred bucks.

Caroline: Is that true?

Dave: Not even close.

Caroline: Less or more?

Dave: More.

Caroline: One hundred and eighty bucks.

Dave: No.

Caroline: I don’t know.

Dave: How about if I told you some prosthetics cost $15,000?

Caroline: Ok, $16,000.

Dave: No, I just said $15,000.

Caroline: I said $16,000.

Dave: Yes, I know, I’m not negotiating with you.

Caroline: [laughing] I said $16,000.

Dave: Is there anything about prosthetics that scares you?

Caroline: No. I think it’s cool.

Dave: Why?

Caroline: ‘Cause – you get to see people’s legs chopped off if you’re the chopper offer. [I consider whether that answer requires me to call a mental health professional for my daughter; meanwhile, she starts singing while looking at herself in mirror] Purple belt. Purple belt. Purple purple purple belt. I like this belt. I love when people wear this. Keep talking. How about you ask if I had that kind of leg would I be scared?

Dave: Would you be scared if you had that kind of leg?

Caroline: No.

Dave: Why not?

Caroline: Because. [Shouts] NOTHING IS SCARY! You wanna know why it’s not scary, Dad? Because I’d have the leg and that just wouldn’t be scary. It would be scary for other people.

Dave: Thanks for being interviewed.

Caroline: You’re welcome.

talking with . . . jeff cain

For this week’s post I spoke with Jeff Cain. Jeff and I joined the Amputee Coalition of America Board of Directors at the same time (2003) and we shared (and continue to share) an interest in legislative and advocacy issues affecting amputees. So, of course, this interview contains very little discussion of either of those topics, since Jeff is asked to speak about them endlessly, thereby depriving the world of his insightful thoughts about a variety of other issues.

When I first met Jeff in 2001, he was in a wheelchair, having just undergone the elective amputation of his second leg below the knee. He had lost his other leg (also a BK amputation) 6 years earlier when the single-engine plane he was flying crashed. Despite the ample flow of painkillers flowing through his bloodstream when we first met, Jeff was polite and remarkably cogent.

Jeff led Colorado’s effort to become the first state to pass a prosthetic parity law, helping ensure that people with limb loss/difference have access to appropriate prosthetic technologies. His experiences and skills have made him one of the leading figures in the LL/D advocacy community, and with his assistance, 17 states now have passed prosthetic parity laws. In addition, he has been instrumental in introducing a Federal prosthetic parity bill that is winding its way through the corridors of our nation’s capitol.

An avid outdoorsman before his accident, Jeff maintains an unnervingly high activity level: cycling, swimming, ski-biking (a sport he introduced to the US adaptive community), snowboarding, motorcycling, and yes, piloting single-engine aircraft once again. During the recent ACA annual conference in California, Jeff glided around the parking lot on a skateboard using a staff left over from the Lord of the Rings trilogy to propel himself like a stand-up paddle surfer. Meanwhile, just in the writing of that list I put on another 2 pounds.

Jeff is a family physician and member of the American Academy of Family Physicians Board of Directors. During his medical residency he co-created the “Tar Wars” tobacco-free education program for 5th grade students, now one of the AAFP’s best known programs, having reached all 50 states and 14 other countries. He is currently the Chief of Family Medicine at the Children’s Hospital in Denver, and practices Family Medicine at the AF Williams Family Medical Center, also in Denver.

He does lots of other things that, if I add them to this introduction, will rival the post below in length, so I’m going to stop after making one more comment: Jeff is one of the most thoughtful, articulate individuals in the LL/D world today. If you want an interesting and thought-provoking answer to almost any question, you’d be hard pressed to find someone better than Jeff to provide it. Now that I’ve built him up to almost epic proportions, let’s see if he delivers the goods in the following interview.

Dave: In 2003, you and I had a discussion during which you said that the power of the limb loss/difference community, the power of all these individuals, is their story. Why do you think that’s the case and how did you come to that conclusion?

Jeff: I think that as human beings, as creatures in this universe, we communicate in story form. When people speak about statistics or look at graphs it doesn’t really help them relate to each other or to the larger community. At the time you and I spoke, we were talking about the power of story to be able to help change things like insurance laws or the perception of amputees in our country. We’re not going to pass legislation by just talking about the statistics of how many amputees are out there. We’re only going to make a difference when people hear the human nature of the story. Stories are what really connect us and helps us to be able to communicate with legislators to make and pass laws. Stories also help us grow both as individuals and with each other. Without having seen or touched another life that has been through an amputation, we all feel like we’re alone. Stories help us connect with others who are faced with similar challenges, understand the personal lessons from amputation, and allow us to move forward with our own lives.

Dave: So you’re really talking about two different things. There’s a strategic element to the stories on the legislative side. And then there’s a therapeutic value on the other side. Now, you were the individual responsible for spearheading legislation in Colorado and nationally that is helping ensure that amputees would have access to prosthetics. Colorado was the first state to do that. As you were going through it, were you conscious that you might be doing it for some sort of therapeutic reason?

Jeff: Was I thinking about this as part of my own therapy? No. I was doing it because I thought I had the ability to help improve lives of amputees across the country. But the irony is that the stories I heard around the kitchen tables of our legislation team had a profound impact on me personally. Up until that point, I had not had much contact with other amputees, even minimal contact. Funny, it was the drive to be able to work through the legislative challenge that brought me to their stories, but also brought me better understanding of my own amputation and ultimately even led me to the Amputee Coalition of America.

Dave: When did you become aware that telling the story was as much about the therapeutic value of “doing something for me” as opposed to doing something for all amputees?

Jeff: Um . . . I’m probably not that bright, Dave. [Laughing].

Dave: So in other words, about 5 minutes ago?

Jeff: [Laughing] No, no, no. I think there was a small glimmer of it as we took the prosthetic parity law nationally and began to understandd that there was an additional individual internal value. That by working through my own challenge, I was helping others and at the same time doing my own work. And then I really got a bigger shot of it at the ACA meetings as you and I started working together with the ACA board on larger amputee issues, being able to see how people really grew individually when they were were working on helping others.

Dave: How did your medical training help you as you were adjusting to your life with limb loss?

Jeff: Sometimes medical training helps you. Laying on the field at my accident, I had to manage my own airway. Being a doctor can help save your own life. But there is another side of being a physician patient. Sometimes being a doctor can get in the way. When you’re in the ICU, it doesn’t help to try and set your own ventilator settings.

Dave: [Laughing] And just out of curiosity, when you do that what tends to happen?

Jeff: What tends to happen is people roll their eyes big time. It really rocks your world when one week you are rounding in the ICU as the captain of the ship, chatting up the nurse at the front desk. And only days later that same nurse has to lift you up to perform personal hygiene. It rocks you to the core. Being in your own hospital and having your doctor friends taking care of you was really challenging. It takes you out of everything you know. I lost my footing, both literally and metaphorically.

Dave: I’m interested in comparing experiences now. I can remember the exact moment when I asked my wife in the hospital, “Why did I do what I did?” Why did I put myself in a position where I could get hurt? I remember my wife staring at me and giving me a look like, “I don’t know, why did you walk into the middle of that road?” And I said to myself, “Oh my goodness, this is going to be a very bad place to go.” And I made a very conscious decision only a few days after my accident that I was going to live my life in rehabilitation increments. “What do I have to do to reclaim my life?” And I never really looked back. Was there one defining moment for you after your accident where you made a similar decision?

Jeff: Not the same as you, Dave, but there are a couple of moments that stick out.

One was getting out of the ICU, sitting with my flight instructor reviewing the accident and talking about the twists and turns of life. I believe that life is a risk sport and that if you’re living it fully, sometimes stuff happens because you’re really participating. [Before I took off in the plane the day of my accident], somebody offered me a beer and I said, “No, I can’t have a sip of that beer because Claude is going to let me fly his airplane later today.” It was my birthday, he had an open cockpit airplane, it’s what I loved. If I had just one sip of that beer, I wouldn’t have gotten in that airplane. What would it have been like to take that other road, that other path? You have to understand in life that what you know is only the path you took. You don’t ever know the path that you didn’t take.

The second moment was the next night, sitting in my room in the hospital bed. Yes, there were dark times. Times with tears and when people held my hand. One of my nurses had lost a friend in a small plane crash. And yet I realized that I was still there, still alive. For me, as long as I can see and understand the world and interact with it, I believe it is possible to live fully and to make a difference. That was another one of those “Aha!” moments. I was so glad to be alive. I had to thank the people with me and tell them that I loved them, and was glad to be there with them on this journey.

And the third time [laughing] was later that same night, wondering what it would be like to ride a snowboard again, but with this changed body. So I sat there in the dark, sitting on the edge of my bed, visualizing carving a turn on a snowboard, wearing a prosthesis before ever having seen one. That was literally days after the ICU.

Dave: When you start talking about envisioning yourself doing things – you always hear people say when learning a foreign language you’re fluent when you dream in that language. I’ve had the experience that the farther away I get from my amputation, the more I dream that I’m an amputee but without any physical limitations. So I’ll be doing things in my prosthesis that I can’t possibly do in real life. I’ve always taken that as some sort of symbol that I’ve adapted to life with limb loss. At least I rationalize it that way. When you’re asleep, do you dream of yourself as an amputee?

Jeff: It’s funny, Dave [laughing], because I don’t think of myself as a guy that doesn’t have legs. I put on my legs in the morning and I wear them all day long. It has become so integrated, I don’t even think about it as a difference. It’s just who I am. I can’t even tell you how I dream. I don’t dream about prosthetics.

Dave: Which tells you how much help I need!

Jeff: [Laughing] No, no, no, no! Until a year or two ago I’d never even seen a picture of me without my prosthetics on. It was in a hotel room, getting up in the morning, when I saw myself in the mirror for the first time without legs, with just my stumps. And I went, “Oh my God, I don’t have any legs!” [Laughs] Ten years after my accident.

Dave: You went down two very distinct paths with regards to amputation. On the one hand, you had no choice immediately after the accident – you woke up and one of your legs was gone. And then years later, you went through the process of electively deciding to amputate the other one. Which was harder to deal with?

Jeff: The first loss. After the accident was an immediate, fairly radical change in what I could do in the world. From being a man that was doing some pretty wild stuff, like biking up mountains and roller blading, to a man that had one prosthesis and a bad leg. To everyone’s surprise, the prosthesis ended up being the good leg. The leg they “saved” was the leg that caused the greatest pain, the biggest limits. I had to sort of re-evaluate what I could do constantly as I moved through the recovery process. The second decision for amputation I did with hope. It was a bit of a leap of faith, in hopes of a more active life. Within a month of taking the second leg off, I was at or exceeding the level of everything I could ever do with the damaged leg. In retrospect, my only regret is that I didn’t make the decision to have the second amputation earlier or even at the time of the accident.

Dave: I want to ask you a more personal question and you don’t have to answer it if you’re not comfortable. I joke with people that when my wife married me, she was getting a fit, able-bodied guy with a full head of hair. Now she’s married to sort of a –

Jeff: A bald guy! [Laughing]

Dave: A bald guy, a guy who’s getting a little soft, a guy who’s missing body parts. I tell people that I’m going to hold onto her like grim death because I’m dating way above my pay grade. I’ve thought a lot about what I would do, though, if I wasn’t married. How would I deal with telling someone I wanted to date about my situation? You’ve dated women since your accident – what has your experience been?

Jeff: The world doesn’t really understand what it means to live with two prosthetics. They don’t understand either the capabilities or the limits. I was afraid for a long time that I would be rejected for that. The truth is, there are people in the world who would reject me for that. Turns out, those are the wrong people to date. [Laughs] I no longer worry about that because this is who I am.

I’ve seen both sides. Danced with a woman, even had coffee and dinner with her, and she didn’t even know. But after revealing my prosthetics, she rejected me outright. That night I remember laughing out loud how shallow she had turned out to be, and yet also being quite sad because it was also the closure of a door of something that I had hopes for.

The person I’m dating right now I’ve dated for several years. She had actually seen one of my prosthetic ankles the first time we met and I didn’t even know. And so later on I was working up this big internal “How am I going to tell her?” dialogue, and she responded, “Oh, I know that.” It was no big deal for her. And that was helpful because I knew it wasn’t part of the decision for us to date or not to date.

Dave: You wrote a story called The Gift. Why did you think it was so important to tell that story?

Jeff: The Gift is a small story about meeting a young woman who was one of my patients, an amputee, and she had lost her prosthesis. Entering the room to talk with her about her prosthetic needs, she saw me as “The Doctor”, and as we talked it was clear not only that I wasn’t communicating with her, but that she was in a dark place without hope. In her culture – she was an immigrant – being an amputee meant that she was family baggage. We only really connected when I took a chance and raised my pant legs. Seeing the shiny prosthetic ankles, her eyes got really big. “How can you be an amputee? You’re the doctor!” That was the first time I understood how sharing my story as an amputee could change a life, the ability to see what is possible in life, and help move people forward. It’s an important change when you move as an amputee from doing things “in spite of” amputation to understanding there really is a gift inside of the experience. The even larger lesson was that sharing my story that day was not only a gift to my patient, but also a gift to me, because it helped me understand that walking this path had actually enhanced my life in ways I hadn’t seen.

Dave: When you were a resident you developed a program called “Tar Wars” which educates kids about the perils of tobacco use. My question is a serious one: should we assume from the title of the program that you have Luke Skywalker and Yoda figures stacked in your closet, still in the original packaging?

Jeff: [Laughing] Absolutely not! We started the Tar Wars program because it was an image-based program to help kids understand that the tobacco industry is lying to them. The funny thing is, the second year we were running the program, we did go to George Lucas and got permission from him to be able to use the name “Tar Wars”, but we cannot use any of the imagery, or the music, or the spaceships.

Dave: I want to finish where we started, with our conversation in 2003. I told you at that time that if I could have my leg back but I’d lose everything I learned about myself, my friends, my family, that I wouldn’t reclaim my leg. What’s your reaction to that?

Jeff: It’s a specious question that I don’t like. [Dave laughs] I’m going to reject it. I believe it’s our job to walk the path of life on which we find ourselves, and to live with the adventures we discover along the way. I wouldn’t wish an amputation on anyone. But to be able to see what I’ve seen on this journey has been magnificent. I don’t regret any of those experiences. I’d love to have my legs back, yet at the same time, love the lessons I’ve had on this path.