I came across this post by Megan Devine in Tim Lawrence’s Twitter feed & it really spoke to me. Partially because it’s something I’ve struggled with in sharing my own reality inside the doctor’s office & outside of it from time to time. I know I posted about Tim’s great post on platitudes, but this piece from Megan also had me thinking when I came across it last night.
In the early days of my blog, my post, Deeper Questions, had me evaluating how I felt concerning being transplanted with “marginal” lungs that had been rehabilitated. I saw that someone from one of my transplant support groups had posted this item from my transplant center’s website & it gave me thoughts along similar lines. Something I had not considered before. How would I feel about receiving lungs from a (former) smoker?
Even though it was written by a doctor, this post still rang true for me. I took several of these calls over time as a customer service rep, & I would try to help people sort out the messes. In fact, even after my promotion, this most likely was what I would be doing yet today (if I was still at work and not on disability). I’d be helping both employer groups & members. I’m still in “recovery” mode…because part of me misses helping people, but part of me doesn’t miss troubleshooting messes like this in the slightest, especially when it came to dealing directly with specialty pharmacy issues…
The genetics & basic science research of tuberous sclerosis complex (TSC) can be hard to follow at points, even for me. I do find it highly fascinating even if it’s harder for me to wrap my head around than the clinical research.
I remember sitting in a conference listening to David Kwiatkowski, MD, PhD give a presentation at a conference once & being in awe with what he was accomplishing with fruit flies (drosophila) at the time in the research space. This was probably at least 10 years ago now (if not more). It took me a while though to wrap my head around the genetics for myself in a relatable way. Don’t ask me to break down to anyone, that is one area I still struggle.