The sibling scientist life

Soooooo…

Turns out that my sister’s recent adventures with bacterial infection – which have caused her to be taken to the ER twice in the space of about a month – are at least partly due to methicillin-resistant (or multiple-resistant? I was taught methicillin in my bacteriology class) Staph. aureus, also known as MRSA.

I’d much prefer that she have this kind of MRSA. I brought my Salmonella GiantMicrobe to her ICU room when she was fighting that particular infection. I was, at the time, in the middle of an experiment for my dissertation work that involved diagnostic tests for Salmonella, which made everything that much more surreal.

Hopefully that snippet – it’s too short to be a proper anecdote – conveys something of the oddity of being a sibling scientist. In general, parents and sibs of people with disabilities become experts about those disabilities, especially if they are severe and if our sibs have barriers to acting as their own advocates. We are experts because our sibs share their experiences with us, because we have witnessed them for large portions of our lives. My level of expertise includes a lot of that, but is much, much greater in the academic vein.

In keeping up with the professional literature – the results of studies that scientists have successfully defended to panels of peers as worthy of sharing with the community as new knowledge – I get headlines and summaries about all sorts of conditions delivered by email almost daily, and I read the full studies for some of those. Multiple sclerosis and epilepsy usually catch my eye, of course, but when someone publishes a study that explains speech delays or cleft palate, I also notice. Other malformations of the brain during gestation, what happens in weakened or unusual immune systems. One journal has reference material for doctors every month, blurbs that help them to quickly identify major disorders that are obscure or otherwise important to distinguish. My own research includes some study of how infections happen (one of my favorite topics is how pathogens influence hosts over multiple generations, and how they are influenced right back by the hosts), so I frequently read about particular infections, or have to refresh my knowledge about broad groups of organisms that can be harmful to humans. I also study genome science, and a lot of genomes that people study are pathogens.

So when my sister had a Salmonella infection, or now MRSA, I may know more than my parents do about what she’s facing, even if they’ve talked to the doctor and I have not. Which, in fact, happened tonight – my mom joked that I was the person to call when I explained to her what I’d learned about MRSA in bacteriology. (Namely: some varieties of MRSA really are “superbugs” that don’t die when treated with any of our antibiotics, usually with the exception of vancomycin, a drug that doctors try not to use so they have a last resort. But most MRSA varieties are more likely to have one or more drugs that they can’t resist, so normal antibiotics kill them, even if they can fight off some of our strongest or most rarely used drugs. I don’t know how accurate this still is – my class was a decade ago! – but the CDC and Mayo Clinic websites make me think my knowledge isn’t totally outdated. :-)) And it’s always a bit odd, providing info that MDs either don’t know or haven’t shared. It’s extremely odd to understand, intellectually, so much of what is going on with my sister’s physical health.

I also find myself frustrated, frequently, that I don’t know enough about my sister’s health and body, from a purely academic standpoint. I don’t have training in, for example, anatomy – bones, muscles, nerves, connections – so I don’t know what I can do to help her feel better after a seizure, or how to help her walk more confidently. (Her normal mode of locomotion at home is crawling, or using her walker/holding someone’s hand/etc., but she’s not good at walking.) Very often I feel like I should be able to use my knowledge of biology to help other siblings understand things that they aren’t being told, or that they’re being told but incompletely comprehend.

At the moment, the fog of depression and the pressure of a writing project at work are taking up my “coherent writing” energy, so I haven’t been posting a lot here, but I felt like talking about this interesting set of feelings here. It’s fascinating to me that my sister’s disabilities were a major motivation in pursuing science in my young life, but I also realized when I was young that I had to form a separation between work and family to protect myself from becoming self-loathing if I failed to make sufficient progress in helping my family with my work.

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