When "How are you?" is a loaded question.

How are you doing?

For almost all of us in our daily life this question has become nearly meaningless. It's part of an exchange of the most minimal pleasantries. We think of it more akin to saying hello than an actual request for more information. The most expected –if not the only acceptable-- reply is “good”, “hanging in there” or “not bad”. Rarely does the questioner push for much more of an answer.

But with a rare disease the question can shift a bit. Asking about my son, Lucas, there can be just enough added interest to suggest the answer should have more detail than the minimal “pretty good”. People phrase the question with a bit more intention. “How's Lucas doing?” means something a bit different than “How are you doing?” and “How has Lucas been?” might carry a bit more weight.

When I'm asked this I have to decide pretty quickly how much of an answer you want. Is one or both of us in too much of a hurry for an answer other than “He's good.”? A fellow rare disease parent and advocate Jennifer Siedman of Courageous Parents Network calls this the Supermarket Answer. The quick response you might offer when passing an acquaintance in the supermarket. We know we don't have time to get into a longer more accurate answer. Bo Bigelow ran with this notion in an episode of his podcast “Stronger Everyday”.


Personally I never feel honest using the short hand answer “He's good.” even when we're in a stretch of mostly positive health for Lucas. Should I answer “He's good, for now”? It is pretty accurate but a bit brutal. The shorter answer feels dismissive of their interest, like I don't want to talk about it and they've bothered me by asking. This is almost never the case. I love to talk about Lucas and am always appreciate of others' concern for him. Also anyone who knows Lucas' condition finds an unqualified answer of “good” disingenuous. They know he's not in normal health and the potential for health catastrophes is always looming. What do I mean by “good” am I brushing off the question?

So my go-to answer has become just a bit more involved. When Lucas has indeed been healthy for a stretch, I'll answer “He's been his version of healthy. Lots of laughs and smiles.” or “He's surprisingly healthy, we measure that by no unplanned hospital visits in the past 2 years.” Yep, that exact mouthful. I feel I have to define my terms if I say good or healthy describing my son. If the friend I'm talking to has learned anything about Menkes Disease they're aware of how bad things might be. Lucas and boys like him could have seizures, could go blind, could get pneumonia, could die. Do I need to list that none of those things have happened recently? If I don't do I sound reconciled to our fate or far more comfortable with bad fortune that anyone should be?

Another aspect of the supermarket answer is not just how much time you have for my answer but how much of our reality you are ready to hear about. I don't want to dump a litany of complaints on you. Some friends probably don't want a casual conversation that quickly turns to the likelihood of a child (my child) dying in the next few years.

Perhaps it's best to start out vague and wait to see if there's a follow up question. “So he's better?” (No, I can never say a blanket yes to that one.) “Any new research on Menkes?” (You've opened the door wide with that question my friend. Thank you.).

And it's no better in the virtual space compared to actual face to face encounters. In our social media world where often only our best moments get shared with distant friends or family it can be hard to find the best opportunity to share the other side of life. Of course I'd rather post the pictures of my smiling, laughing boy over one of his pained expressions. And most people would prefer to see the smiling photos. But some people do want to know more of the story. Is it misleading to leave out the rough times? I think it is. Is it a disservice to other families facing Menkes disease if I make it come off like it's not a big struggle for our family?

And so you know as of this writing we've had a very good stretch for Lucas measured by no emergency hospital trips in three years. Last week he did have scheduled “routine” minor surgery that went very well. And yet even those two sentences of update feel misleading as I bear in mind most kids with Menkes don't live to age ten and he's now more than nine years old.


So how are we doing?

How much time do you have?