Share. Connect. Love.

Lace 'em up!

Brian is direct and to the point so our description shall be too. Our site is intended to let friends and family know what's happening with the ongoing treatment and man[...] read more

Latest journal entry

"Mind the gap"

I preach frequently about the gap between what is actually true, and what we believe or wish were true: That there’s a connection between being good and experiencing good things … That we can have control over everything that happens to us in this life … That modern medicine has made it possible to relieve suffering, even if it can’t cure disease.

... or how about this one: that knowing something is wishful thinking is enough, so you don’t actually have to experience the disappointment.

I really did think that somehow there would be a magical pain relief method. I mean, isn’t it enough that this disease isn’t curable? Shouldn’t fairness mean that the palliative care be miraculous in its effect? Couldn’t the reality of this oh-so-fragile mortal existence bend itself for us, just a little?

Apparently not, so we’re left to just do what we can. Which meant visiting the pain clinic on Tuesday, hoping to get Brian’s pain under better control. They agreed that things needed serious improvement, and suggested that the fastest way to titrate his medication levels (i.e. figure out exactly how much pain reliever he needs to get him reasonably functional) would be to admit him to the hospital and put him on a patient-controlled analgesia IV.

Which is what we did. He was in University Hospital for four days, under the competent and compassionate supervision of the Palliative Care team. After some experimentation and calculations, we were sent home with a whole new medication plan, which holds great promise for improved comfort, sleep and function.

It’s not a miracle. It’s still not fair (the universe stubbornly remains on its axis). And our daily life continues to break me wide open with the realization that there are so many people in this world who are suffering as much or more than we are, and holy cow, how do we all get up every morning? But we do (mostly). And this hospital stay, exhausting as it was, should make things easier for him (for us) for a while.

It’s enough to allow us to jump the gap. And that’s how we manage to get up every morning.

Stay in the know. Sign up to receive email notifications the moment new Journal entries are posted