As many remember, my husband Ryan (a/k/a ROC) was scheduled for brain surgery in March of 2020. We counted down the days, we checked things off the preparation list (bills, time off work, childcare, house maintenance, etc), and we waited. We felt ready but we were still nervous and scared. Mostly, it was a fear of the unknown.
What we never felt was that this surgery was elective. It seemed essential in order to get answers as to where in Ryan’s brain the seizures are stemming and maybe even what’s causing them. The first surgery, involving the insertion of probes in Ryan’s brain, will allow us to get these answers so that we can know how to treat or what kind of surgery would help stop his weekly to monthly tonic clinic (major) seizures.
With five days to go until this essential, life changing surgery, the countdown was brought quickly to a halt and the fear turned to tears. We were shocked to learn that this critically needed surgery in our eyes was considered elective. We couldn’t believe that it was canceled due to COVID-19. To make things worse, the surgery was postponed to February 2021.
The two and a half months that followed cancellation day have been a roller coaster for both Ryan and me. Despite the ups and downs of dealing with the cancellation, having to work full time from home, and all of the usual day to day stressors, Ryan seemed to have found a natural way of treating the epilepsy. Things were working so well his tonic clinic seizures turned into more like myoclonic jerks (and much less frequent), he was able to reduce his medications a little (with the oversight of his doctor), and we even considered if he could keep it up he might not need the surgery.
There was no sense in counting days until the surgery anyway. It was almost a year away. The plans made were put on hold or changed. We made new plans. Anything can happen in almost a year’s time.
Then it happened, the phone call came. The surgeon’s office called to see if Ryan was ready to have the surgery on Monday. Monday! One week from the date of the call! The frantic has now set in at our household.
Yes, we realize this is a good thing. We want to get answers. We want an end to Epilepsy. But wow, a week to prepare?! We went from 6 months time to get ready to 10 months time for preparation to one week.
Finally settling into reality, the hospital prep lab work has started and plans put on hold are being put back into action. It is now time to start counting down…again…five days to go.
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