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.
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.