Friday, May 27, 2016

The Comfort Sheets- Chapter 2

The Comfort Sheets. I desperately need them again. The childhood memories- when all was well. When I was carefree--- oh how luxurious - to be Care Free.

It has been a tumultuous year: the death of a friendship, the death of a brilliant, funny man who was neighbor and friend for many years, the impending death of another longtime neighbor and friend whose wife is one of my dearest. And now this week, learning that another dear friend's daughter has breast cancer. All this in the midst of our house destruction and reconstruction and of course our foremost concern - the dramatic downturn in Michael's health and the inability of our efforts to achieve stability.

The usual suspects for maintaining some sanity (scarce as it is) - tap, family, friends, walks on the beach, humor in large doses, great food
and fine and not so fine wine have worked to a pretty decent extent. But sometimes I just need to curl up in those crinkly, wrinkly sheets and go back:

The sweet sound of my father whistling.

Dad teaching me to swim in the frigid water at Hampton Beach N.H.

The warm,stale alcohol smell of the bar adjacent to my Irish Tap class.

Making angels in freshly fallen snow.

Thank you sheets. I needed that.

Friday, May 13, 2016


That's what I'm doing---putting things in perspective. I'm trying anyhow. It could be worse and I am well aware of just how much worse thanks to the epilepsy and cannabis communities I've been a part of over the years. I also know it could be a whole hellava lot better! And I know we deserve better. We do.

We cancelled our long-planned trip to Rhode Island yesterday. We were due to leave the end of May and book-end two weeks in a beautiful home on gorgeous Ninigret Pond with a few days at my Mom's home in Springfield.  MA. It's been two years since we made the trip. We missed two years ago because Michael was on the wait list for Charlotte's Web and we didn't want to lose out if/when his number came up. We didn't go last year because of the fear of traveling with Michael's CBD oil. This year my attitude was to go for it. I had a plan to ship CBD, I rented the house last October and we paid in full several months ago. I invited lots of friends and family to come and stay. We were so looking forward to it.

As November became December and we were still dealing with a rash of seizures and emergencies, Barry and I canceled our annual January trip to Paso Robles. We told each other in Michael's hospital room that things would probably be fine by then, but just in case. And January became February and February, March---- 5 hospital stays and 4 ambulance rides since November. And I began to think---when will we get back to where we were last October? When? And thoughts began creeping into my mind- Will we need to cancel Rhode Island? Is it possible this will still be going on like this? Constant vigilance? What kind of emergency set-up does a small beach town with a volunteer Fire Department have? So I started to be apprehensive, really apprehensive about going. I kept pushing dates out. If he's better by mid - April, then the end of April, then mid--May, we're a go. We arranged a date for his VNS replacement surgery that would enable us to have the surgery and the post- op visit just in time to get us to the east coast. The day before the surgery, we were notified of an abnormality in Michael's labs. Nutshell: postpone surgery, undergo lots of tests, rule out the worst things, sigh with relief it's an infection (which may or may not have been going on for a while). Could it be the cause of this months' long exacerbation of his condition? Did CBD keep it from getting worse, going systemic? We'll never know.

I know this. We're relieved it's not something else that's awful- refractory epilepsy is quite enough. I'm strangely relieved we won't be traveling across the country. I didn't want to be hovering, worrying, monitoring when we were supposed to be relaxing and having fun.

Michael needs to heal. He needs to get back to where he was when CBD transformed him. He'll get there. I know he will. Just not via Rhode Island . Not this time. Hopefully,the ornery infection will respond to medication. Hopefully, the VNS replacement will occur soon. Hopefully, in the middle of the chaos of our home's destruction and reconstruction, Michael will emerge stronger and healthier. Hopefully, I will emerge sane. 😉