First Post

Where Did You Hear That?  The other use of Facebook- melting the glacier of medical information via on-line networking.


“And what is your source of this information?”  I’m asked again by someone in a white lab coat.


I’m reticent to give up my source as a facebook group I’ve been hanging out on for over two years now, since I was diagnosed.


But here’s the thing.  Think of all medical knowledge as a vast glacier.  Some knowledge has managed to siphon off as water already.  But most of it still lay well hidden, packed beneath the surface, still as ice until someone innovative manages, one way or another, to dig it out.


What has melted flows into a giant lake.  That lake splits into several bodies, represented by different countries and language groups.  Researchers in Japan gathered this, Europe that, and the US, that.  Anecdotal evidence shared by only those who speak the same language or happen to meet at a conference.  Smaller bodies.


Within, say, the US, there are competing drug companies which keep knowledge from another for proprietary reasons.  University researchers guard their knowledge like the life rafts upon which thier careers stay afloat, which it is.  Dial the flow down another notch.


People go to medical school.  They are taught by people who may or may not have ever been to one of these lakes.  The water flows through ever smaller cracks and crevices.


Each human brain has only so much capacity.  Now the water is flowing through a tube as small as your kitchen faucet.  That medical professional naturally has personality quirks and flaws, bad days and good days, and has only fifteen minutes to spend with her patient.


Trickle, trickle.


As I walk away from my appointment, I realize how, in that fifteen minutes, (actually seven by the time we’ve  exchanged pleasantries and taken my blood pressure, ) I forgot to ask at least three very important questions, and neglected to disseminate a couple pieces of information about myself which may have been relevant to the discussion.


Drip.  Drip.  Drip.


And yet this tiny slice of the information available has a potentially huge impact on me.  What should I eat?  Which medications do I take to help myself?  Which surgical approaches will I consider?  Will I be able to get up on the morning, how much pain will I be in and what will I be able to do then?  Where will this condition be in my body, in 20 years? 


A few months ago I heard about an effective pain remedy through one of my on-line groups.   Four doctors said no, mostly because they simply aren’t familiar with it.  The third (the one whose specialty this was in, and should have said yes) was downright aggressively mean, condescending and obnoxious about it.  My on-line group cheered me on.  They said keep going, someone will prescribe this for you.  Number five was a charm.  Not only did she prescribe it, but gave me several options, and did it with compassion.  And it did help.


Belonging to on-line groups is my act of rebellion against this inevitable contraction of knowledge and information.  My groups are attended by people in Finland, France, Canada, and Indonesia.   Collectively we have seen hundreds of MDs, read hundreds of studies and papers, and felt symptoms, in detail, over time which our MDs cannot.  Sure, most of us are novices to the medical field.  But we’re damned motivated.


Together we can begin the work of quilting together the information we have received, forming the beginnings of a tapestry of information which can help us.  We are swimming upstream, back to the lake of knowledge, back to chip at the glacier with pick-axes if we have to, ready to do anything, try anything to help ourselves, our loved ones, and all fellow information-hungry sisters and brothers everywhere with the awareness and understanding we need.


I understand it is my obligation to learn everything I can, and re-disseminate it by whatever means I have at my fingertips.  And disseminate it with, if at all possible, compassion.  Empathy is a commodity MDs are mostly too strung out for time and emotionally drained to deliver.  Yet we can, I can.  We must.  Because when it comes to healing, it’s the soul food which ranks at least as important as the water of comprehension we drink.


The medical community adapts such philosophical change a little faster than the Vatican, but it’s not winning any speed contests.  I still feel that nugget of judgment when I tell an MD how I’ve managed to steal away information maybe once held sacred to a few.  But recently several MDs have joined my groups, and I am happy to be a fly on the wall as they discuss, volley for intellectual position and debate the subjects which, ultimately may make or break my life.


I will no longer apologize for my on-line groups.  I will leverage them against the dams between me and what I need to know.  My hope is that with such contributions, we are able to open many tributaries flowing downstream toward the people who need it.





Photos by Emory Collinson        © Niki Naeve 2015