5 Mar 2013

Technical vs. accessible (and why hope is necessary)

Author: krb3k | Filed under: Uncategorized

Today I was asked by a friend to find out some information about a rare muscular disease with which her six-weeks-old granddaughter was born. Two things in particular struck me about her request:

1) she asked that I find out all that I could about the disease

2) she wrote that she’d used Google, but mostly only found pictures and that she’d rather not see them

Those two things in and of themselves aren’t unusual, but they had an impact on both where I searched and what I ultimately gave to her.

See, my first instinct as a librarian (though I now work mostly with technology) was to go to the databases, where the peer-reviewed research lives. As I scrolled through screen after screen of long titles with long words, though, I realized that this wouldn’t be helpful to my friend and her family. If they want hard science, they can get it from a specialist (though I don’t think that there IS a specialist for this disease in Virginia). What they wanted from me was something accessible, something that would help make sense of what’s happened, and something that would give them hope. So I did what might be unthinkable to some librarians: I went to Wikipedia.

Yes, Wikipedia. And from there I went to Facebook, on which there exists an over-600-member community for this disease. And from THERE I went to the website of an international organization solely devoted to this disease. I found an overview of the disease which explains in layman’s terms what causes it. I found out that there’s no cure, one can only treat the symptoms. I found that this child will need a specific diet, a slew of specialists, that she may never walk.

I found that it’s likely she may not live past 21 months.

But I also found resources on how to help children with this disease communicate (speech pathologists, apps), how to make them mobile (physical therapy, wheelchairs, if necessary), how to find them a guide dog, how to help them play a sport.

I found out that children born with this disease have normal mental development and are capable of having fulfilling lives.

In short, I found a lot to be hopeful about. So I took my highlighter and marked up the pages that I’d printed out. Sure, I highlighted the things to watch out for (ear infections, colds), some possible medications that might be prescribed, tests that will probably be run, but I also highlighted the resources lists. I did it for this reason: as overwhelming as the prospect of physical therapy, guide animals, and a lifetime of specialists is, it is also hopeful. It’s a message to her parents and grandparents: she will live to need these things. You will celebrate her 2nd birthday, her 10th birthday, her 22nd birthday. You will take her trick-or-treating. You will deal with her bratty preteen ways. She will live. Have hope.

Beyond not relying on peer-reviewed sources, some might also say that I’ve done this family a disservice in choosing to emphasize the things that I did, and that I should have balanced that with grimmer details and articles whose titles are three lines long. But you know what? That isn’t what my friend wants: she asked me to find out all that I could about the disease (because no one had explained it to them in a way that made sense) and told me that she couldn’t look at pictures of people with this disease. That last part let me know that, while she wants a realistic view of what this baby is facing, she also wants some hope. She can’t stand to look at those pictures (which we, as librarians, know are surely representative of worst cases as that’s what the Internet thrives on) and see her granddaughter.

So, while the details of the multiple complications that could (and likely will) occur are included in the information, along with the possibility of death at 21-months-old, that’s not what stands out in sunny yellow highlighter. I included a note along with the information in which I ask her to please let me know if she needs anything else, or if there’s something specific that she’d like for me to try and find out. Eventually she and her family will move to the next phase of dealing with this disease and will be ready tackle the technical language, and the grimmer prospects. For today, it’s my sincere wish that some of their despair can be dispelled by hope, which will give them the heart, the strength, and the courage to face whatever comes next.