Phantom

For several years I worked with amputees. I got to closely interact with people that had lost limbs due to traumatic injuries, chronic illness, or violent conflict. I met them at all stages of their journey – some were still in the hospital, less than 24 hours after they and their limb had parted ways forever, others were years past their amputation. Some were missing more than one limb; I spent a day with an incredible young man who was missing both arms, above the elbow, and both legs, above the knee.

One thing I learned was that there was absolutely no “standard” path for anyone who has suffered this kind of loss. Some of these people were para-Olympians winning gold medals in the 200-meter dash with two prosthetic legs, while others were never able to even hold a job again. There was a wide spectrum of what the post-amputation lives could look like, and wild variation in how people chose to adapt.

While I don’t believe in defining anyone else’s success for them, there were definitely people who fared better in their changed lives. Among the people who I would consider to be great stories of post-trauma success were incredible athletes, motivational speakers, brilliant artists and musicians, business leaders. People who did tremendous things in spite of their disadvantage.

Among that crowd, though, I noticed an interesting trend when it came to how other people interacted with the amputees. People were encouraging, supportive, even awe-struck when engaging with them, but there was never an unreasonable expectation that they’d literally be able to do 100% of what they could do before the loss of the limb, especially in the case of an arm or hand. And no one was insulted by this or anything. In fact, it was a common topic of conversation: “How have you altered the structure of your life to build pathways around the things you can’t do anymore?”

For instance, one person told me that he only bought certain kinds of belt/pants combinations in specific styles so he could dress himself with one hand. It meant he still could dress himself with one hand, but he had to change something about his life for that to be possible. Minor things like that were common – changes to kitchen/bathroom setups, modifications to cars, and so on. (In fact, my father did this – he lost all the toes on one foot to diabetes, and afterwards he custom-made a metal insert for his boot so he could still shift gears on his motorcycle, which had a toe shifter.)

You know what you never heard? You never heard someone say about one of these amazing, independent amputees: “Oh, it’s such a shame they never recovered from their amputation.”

You would never hear that because it would be a ridiculous thing to say, or even think. What does “recover” mean to an amputee? For most that I ever met, “recovery” meant a successful life, but it didn’t mean returning to exactly the life you had before, because that would be impossible. You can get close, you can be independent, and with modifications to your life you can live it closely to how you did before. But your limb is never coming back, and that means your life has changed. No one saw that as bad – just different.

We do not treat people with emotional trauma the same way.

We treat emotional trauma as binary. You’re either still in some way different than how you were before the trauma, and thus not yet “recovered,” or you’re completely back to how you were, and thus you are. We have absolutely no room in our collective mental model for an emotional amputee.

Some pain isn’t temporary. Some injuries don’t heal.

Consider the following two statements:

“I was out with Bob the other day, and honestly I’m pretty frustrated with him. I wanted to go to that coffee shop on Fifth Street, but when I pulled into the parking lot, Bob objected. He said that’s where Mary broke up with him and he can’t go inside. Can’t! I told him, ‘jeez Bob, it’s been three years since she left you – can’t you just get over it already?’ I mean, come on.”

“I was out with Bob the other day, and honestly I’m pretty frustrated with him. I wanted to go to that coffee shop on Fifth Street, but when I pulled into the parking lot, Bob objected. He said that the stairs are really steep and he can’t manage them with his artificial legs. Can’t! I told him, ‘jeez Bob, it’s been three years since the accident – can’t you just get over it already?’ I mean, come on.”

I don’t want to make assumptions about how you felt reading both of those paragraphs, but I’ll go ahead and tell you that in my experience, the first one seems like a reasonable position to a lot of people, while the second one obviously makes you a huge jerk and almost no one would argue that point.

I worked with enough amputees to know that some do let it hit them too hard, and need a bit of firm love from their support network to get their lives started again. But no one expects them to create a perfect duplication of their pre-amputation life. And it would be totally unreasonable to get mad at an amputee for being unable to do something specific that they were capable of before. In many cases, it’s just more realistic to restructure your life so you don’t do that thing any more. If that means that you change your regular coffee shop to the one with no stairs, so be it.

Of course, as people, we generally have very different views of what “can’t” means when it comes to physical versus mental/emotional tasks. We accept the impossibility of physical tasks when they appear impossible – oh, you can’t get up these stairs because you’re in a wheelchair, that’s perfectly fine, let’s eat somewhere else. But when it comes to mental or emotional tasks, especially those done by others, we think of everything as simply a matter of “trying hard enough” or some such bull – oh, you can’t go into this bar because the cover band is playing your murdered sister’s favorite song, well just ignore it and come have a beer, you’ll get over it.

We should stop seeing people as “not recovered” from emotional trauma just because they’re different than they were before it. If they’re living a life within the standard deviation of success and independence for their circumstances, then that might well be what recovery looks like. A changed life.

If you love someone who lost a limb, you aren’t supporting them by waiting around for their arm to grow back. You aren’t supporting them by getting frustrated at their inability to play piano like they used to. Even if you don’t get frustrated, you’re not supporting them by saying, “It’s okay, I’ll be patient with you, and eventually you’ll play the piano again.” Like… they really might not. That doesn’t mean they can’t live, it doesn’t even mean they can’t play music of some kind, but it might just not look like what it did before. If you’re supporting them well, you’re saying: “I’m here for you, in this life, and what this life looks like. I want to be a part of it, even if that part has changed.”

Change happens all the time, usually gradually. Trauma is just a word for a whole lot of change all at once, a sudden burst of change that maybe you didn’t entirely want. You can’t stay the same no matter what. “A man never steps in the same river twice; it’s not the same river, and he’s not the same man.” So don’t expect it of others.

Amputees often have phantom pains; pains that seem to come from the limb that’s no longer there. It’s rough, because there isn’t a whole lot you can do about it – if you feel like your hand is burning but you don’t have that hand, you can’t exactly put ice on it. It’s just one of the things you have to deal with.

You can have emotional trauma so severe that it’s like an amputation. A lost part of you. You don’t have to let it kill you, but you might not ever be able to regrow what you lost. Instead, you build a new life around your new capabilities, and you live that version of your life to the best of your ability. And sometimes you’ll have phantom pains, emotional responses that seem to come from what you don’t have any more. Like phantom limb pain, there won’t be a fix – it’ll just be something you have to deal with.

My goal in writing all this is to give you an extra tool to help those you care about. Chances are good that someone you know and love has dealt with something like I’ve described, and you were scared and unsure how to help. This might help. Don’t try to make them live in a world other than their own; just join them there.