The only thing constant in life is change

We got some bad news about the electrical activity in Ben's brain.  Back in December, I asked for an MEG - basically a more powerful EEG.  This is a diagnostic procedure usually limited to epileptic patients who are candidates for surgical intervention.  There are indications in these patients that the abnormal activity is localized to a small area in the brain - which, if excised, could at least reduce seizure frequency.  This test helps to localize the abnormal activity so the surgeon knows which tissue to remove.

I asked for this test on Ben in the hopes that his abnormal activity would be isolated to at least one cortex of the brain.  With the help of other neuroscientists, we had come up with a way to try to help Ben. Targeting that area functionally - say with visual stimuli if it were the occipital cortex - might organize the brain matter.  The more organized it is, the less likely seizures are.  Good solution, right?  And, WAY outside-the-box thinking, by the way.  Ben's neurologist thought the idea was crazy (and desperate).

After the analysis on Ben's brain was done, I spoke to the neuroscientist who runs the MEG lab.  He said he had never seen a brain with so many abnormal spikes.  Granted, the patients he usually sees have been preselected.  But still, it was hard to hear.  After getting this news and trying to explain what it meant to my sister, I burst into tears.  I felt hopeless, sad, frustrated.  This has been kind of my last resort.  My fantasy that would change everything for Ben.  I have not been able to accept that all we can do is keep trying new medications.  That wasn't good enough.  There must be something more we can do!!!  Nope.

And, after all that, I had this thought:  The only constant thing in life is change.  How does that fit into this situation?  Why is Ben's brain not changing?  Why aren't the seizures changing?  How can this stupid saying apply to EVERYTHING in life I never want to change and then not apply to what I DO want to change?!  How unfair.

Then I had a thought.  Our experience of Ben's seizures will change.  That gives me hope.  I felt this moment of peace and acceptance (and let me tell you it truly was just a moment) during one of Ben's recent seizures.  I felt completely out of control.  I really understood for that moment that there is nothing I can do to change that seizure for Ben.  But I can affect my own experience of it.  I can probably also affect Ben's experience of it by just being peaceful around him instead of panicky.  So I will hold onto that thought for now.  This will change.