Everything, Everything Gettin’ On My Nerves

I refer to the movie Everything, Everything of course, not literally everything–though I do have a migraine today so the world and everything in it is, in general, offensive to my overly-sensitized head. (Note: after getting this far with a migraine yesterday, the spinning world forced me to give up and watch Netflix instead).

If you haven’t heard about it, the movie in question is based on a questionable novel about a girl with Severe Combined Immunodeficiency. In the film/novel the girl cannot leave her house because of her immunodeficiency. Even though *spoiler alert* it turns out that her mom was lying to her and she does not actually have SCID, the impression that the audience is left with is that if she did have it she would have to live her life essentially in a bubble. Clearly the author didn’t even take the time to read the Wikipedia article on SCID. I mean, who cares if you grossly misrepresent an already poorly-understood portion of the population if it’s for the noble cause of providing the world with yet another gory teen romance?

Everything, Everything is hardly the first product of our society to distort harsh realities that people face everyday to make a buck; I can’t even count how many times the media has fed us cancer as a bucket-list-to-peaceful-death illness. No matter what illness or circumstance is being exploited though, it’s just wrong. People’s actual pain shouldn’t be monetized like that. But Everything, Everything takes it to a whole new level of ignorance. There’s already enough of that going around about chronic illness, thanks.

Maybe I can better justify my annoyance through a personal experience: at the beginning of every semester I meet with all my new professors. I give them the “Memorandum of Accommodation” letter I get from the Student Support office and explain to them about my immunodeficiency–how I often get sick and miss class because of it. One particular meeting I had last semester didn’t go as smoothly as the others have. Let’s just say there was a gap of understanding. My professor was obviously unfamiliar with the concept of immunodeficiency and I was unfamiliar with such blatant unfamiliarity. He seemed to think that when I spoke of missing class, I meant that I stayed out of class at specific times to avoid getting sick; he asked me if I had an idea of the dates I would be out. I thought buddy, if I had enough sick days to spare that I could miss class to avoid getting sick, I wouldn’t be sitting here having this conversation with you. I also might have given him a “are you slow?” look while I was thinking up an actually appropriate response (not on purpose, it just slips out onto my face sometimes). He also asked me if I sometimes wore a mask. I explained, with the patience of a martyr, that while I am very careful about germs I don’t wear a mask. With IG replacement it’s not necessary. Besides, while it might be helpful sometimes, in American culture there are really only two reasons you wear such a mask: either you are sick with a contagious illness and people should avoid you, or you are very sick with cancer or something. Understandably I should think, I have no desire to be labeled as either of those things. So no, I don’t wear a mask.

That’s the kind of misunderstanding that works like Everything, Everything fuel.

So let’s set the record straight with an assist from the Immune Deficiency Foundation: “Severe Combined Immune Deficiency (SCID, pronounced “skid”) is a potentially fatal     primary immunodeficiency in which there is combined absence of T-lymphocyte and B-lymphocyte function. There are at least 13 different genetic defects that can cause SCID. These defects lead to extreme susceptibility to very serious infections. This condition is generally considered to be the most serious of the primary immunodeficiencies. Fortunately, effective treatments, such as stem cell transplantation, exist that can cure the disorder. The future holds the promise of gene therapy for several more types of SCID.” So someone Maddy’s age with SCID, who had not undergone a bone marrow transplant, would almost certainly be dead. On the other hand, if she had been diagnosed and treated successfully with a bone marrow transplant, her immune system would have been reset and she would have been cured. Either way, she wouldn’t be confined to her house. It’s 2017 people, enough with the “bubble boy” stereotype. We’re better than that.


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