Conundrum of Care

So there is the individual who is sick... and then there's everybody else.  The person with the illness knows their role.  It's not an enviable position but it is more or less easy to understand.  The rest of us are left struggling to discern how we fit into the picture and what meaningful support and care really look like.

Lesson #1 Bandwidth

Allow me to go Full Metal Geek on you for a moment to make a point.  Let's pretend you have a network downlink (maybe the DSL or cable Internet connection to your home) and that it has a maximum bandwidth (throughput) of 100Mbps.  And then your tech-savvy ethically-challenged teenage kid kicks off Torrent downloads for 10 or more pirated movies.  All of the sudden, most of your 100Mbps bandwidth is getting sucked up by Capt Jack Sparrow with his "daring" raid on Hollywood (keep an eye out for those DCMA infringement emails from your ISP).

THAT is what happens to you when you're suddenly faced with a loved one's critical illness.  You can't process as fast.  You can't get things done like before.  You can't focus on (what used to be) important matters.  If you tilt towards introversion (like me), engaging with others (family, friends, etc) becomes an almost insurmountable task.  And yet... shit needs to get done.  New priorities are the focus.  Stuff that was important... ain't no more.  And if someone's expectations are that my former priorities are still relevant (hello job), then we need to have a convo ASAP.


I learned early on that part of my role was to provide care to Martina AND care to the community.  Trust me when I tell you that the community NEEDS care... mainly in the form of communication.  As much as we tend to think of this as one person getting sick, it extends well beyond that - impacting a web of family and partners and close friends... spreading out like ripples from a stone dropped in a pond.

Writing using my electronic tools and toys worked best for me.  I could center myself, find my words, and... as an added bonus... I found it to be somewhat therapeutic.  Face-to-face, one-on-one communication was, more times than not, depleting to me.  In addition to managing my own feelings and conveying my thoughts, I now had to contend with the emotional state and unpredictable reaction of the other person all while dealing with the burden of the bandwidth pirate (see Lesson #1).

The end result was that I had to ignore more than a few inquiries and offers of help because I just couldn't.  Speaking of help...

How Can I Help?

Those four words...which should bring up feelings of support and love... more often than not were met with a blank stare and befuddlement.  "Help?  Well, yeah... sure.  What kind of help?  Um... I dunno."

Here's the thing:  in a situation like this, what you really should be doing is organizing the resources, assessing priorities, formulating actions plans, etc.  But what you're really capable of doing may include hours of game play on the smart phone, Olympic-level curling up in a fetal position, and avoiding human contact - all thanks to the bandwidth pirate.

So, the question "How can I Help?" assumes that the person being asked has the high-functioning cognitive faculties and abstract conceptualization tools at the ready to respond in a coherent and meaningful manner.  That... might be a problem.

Once the news broke about Martina's diagnosis, I had a veritable army at the ready to do almost anything that needed doing.  Meals for the next year?  Done.  Invade Belgium?  They were already mobilizing the armored divisions.  Meanwhile, I couldn't plan and organize a trip to the bathroom.  But over time, the bandwidth pirate slacked off a little and the army became a little more intuitive and self-directing.

I've got some more thoughts on the subject, but I'll pause here for the moment.


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