This is my favorite read of the year so far! It delves into the complexities of raising a child with a rare syndrome (Wolf-Hirschhorn/ 4p-) and does an excellent job of destigmatizing and reframing our understanding of disabilities as well as showcasing what can happen when the different parts of a health care system work in sync.
I liked how Lanier allowed her vulnerability to show through in her writing – I don't work with or have any children so I think on some level it was somewhat difficult to completely relate to the smaller and more intimate details of her journey but the way she writes about her daughter and her own complicated feelings really evoked the full emotional gamut out of me. There's a quote that really stuck out to me: "Bodily difference is charming so long as it doesn't interfere with Normal. Or if it does interfere with Normal – if it is a Disability – it's charming so long as it becomes history, a tale to offer as inspiration rather than a real life to live. Disability is okay if it's overcome". Unfortunately to an extent this still rings true today but I think there's been a lot of development in the way we approach and understand disabilities so hoping we can see more change soon!
Also, I've read a few medical memoirs and one thing that's really stood out to me is how multifaceted patient-physician relationships are. From my perspective (as someone who is not in the medical field), there's always been an innate imbalance of power – physicians kind of have all the information and can make any critical decisions and patients have to heavily rely on them because they lack that medical expertise and I've never really seen a way to bridge that gap easily. I certainly don't blame physicians as well – having to play the part of a medical savant whilst showcasing empathy, patience, cultural competence, etc. and working long hours must be such a huge burden. Y'all have my deepest respect and admiration, whatever that's worth!
I'm glad it all worked out in this case but I've read/seen other cases where even the simplest error, whether it's a physician brushing off a potentially life threatening illness as "just delusion" or them going too far and crossing a cultural/religious/ethical line, can cause a patient to develop deep mistrust for the system. There's another book called 'The Spirit Catches You and You Fall Down' which follows a similar story but with a much different ending.
Has anyone else read this book and if so, what are your thoughts? If you're a physician, resident, or medical student, have you ever had cases where you either encountered a rare disease or difficult patient?
by psashankh