Not Today

"Do you think you'll be able to start the floor today?", I asked the young subcontractor. "Not today" , he said ,

and went on to explain that he booked other jobs when the delays caused by moisture and microbes and asbestos in our drywalls was "discovered" by the primary contractor hired by our insurance company. Any further words he said were a bit of a blur . Something about maybe tomorrow or maybe Saturday. Maybe they'll be finished next week. Maybe.

Maybe we'll go to Cleveland Clinic soon. Maybe. As of this morning Michael's chart has been on some doctor's desk for the past two weeks. Maybe it's the Director of the Unit. Maybe not. Someone's on vacation. The Director? Maybe.

Last night Michael had twenty plus seizures between 8 and 10 o'clock. The Ativan I reluctantly gave him at least kept us out of the emergency room. Maybe today will be a better day. Maybe.

I'm still sitting in my bed. I've made my fruitless calls to Cleveland and the contractor. I've written to a dear friend who sent me an email to let me know she was thinking about us. I've written extensively in Michael's electronic medical record to alert his medical team about last evening and get some bit of advice they might have.

I've cried and cried and cried. Mostly silently. Tears unleashed after weeks and months of frustration and fear and helplessness. A mini pity-party. It'll be over soon. A few moments to let it out and regroup. A few more moments in The Comfort Sheets. Then things will be better. Maybe.

June Gloom

The sun is trying to poke it's way through the June gloom today. Yesterday was very steamy so the gloom should be a welcome development. But there's something about the look of the gloom just lingering. A sinister look, I think.  Gray. Just hanging there.

Go away gloom. Go away.

Of Tears and Laughter

I cried silent tears for about an hour this morning. They started rolling down my cheeks shortly after Barry left the emergency room bay where Michael was  sleeping peacefully following the flurry of seizures we couldn't control late last evening. It was our second emergency call in a week that also included surgical replacement of Michael's VNS. So... I'm tired - and a tad more vulnerable than usual. So...when the two young neurologists entered the room and began to ask the usual questions and Michael performed A+ on his neurological exam; well --- I just sat here answering questions and watching Michael with tears streaming down my face. Screw it, I thought. Then, screaming inside while the tears plopped onto my sweatshirt- fix him!!!! God dammit, fix him this time!

When the firemen and paramedics arrived last night I noted several familiar faces. Surely we have met them all, this being the 6th emergency call in seven months. As usual, they were professional, proficient, courteous and caring. As usual, I hated that we had to make the call- that we needed them at all. Note to self- write the chief and drop some goodies at the station.

Michael's epileptologist dropped by. She's thinking we need to try a different emergency med. Maybe a specially compounded oral gel version of  Versed or something similar. Fine. I want to avoid these ER visits. But...... Why can't we figure out why this is happening? Why? Why? Why?

They must be sick of us I think. I wonder if there's questions about compliance with treatment. After all , Michael's a "frequent flyer" in the Emergency Room and many patients with that label stop taking their medications or have poor follow- through,resulting in more frequent emergency room visits. Perhaps that explains the call from an ER nurse yesterday. She wanted to know how he was doing since the ER visit LAST week  and if we had seen any medical provider since. I relayed that in fact we had. He had a surgical procedure on Friday to replace his VNS I explained, and added that I hoped that would keep us out of the ER for a while. Hahahahaha she laughs hysterically-- a mere 12 hours later. We're baaaaaaaaaaaaaaaack!

I drove Barry's car home from the hospital last night. I crushed the oil pans that are usually under it as I pulled into the garage. I left the car, closed the garage and fell into bed. This morning I woke up early to get here and relieve Barry. I crushed the pans again on my way out. Once here, we had change of shift report and he pecked me on the cheek. " I ran over your oil pans and I don't give a shit". Silence. A look. He left---not mad of course,  but probably not happy I didn't realign those damn pans. Only Meaghan gets how funny this really is--- so I called her. We had one of those hearty, guttural, disproportionate to the story kind of laughs.  And that's when tears turned to laughter and all was a little bit better with the world.

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.

Perspective

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. 😉

The Comfort Sheets

During the last several months I've developed a fond attachment for a sheet set I purchased at Marshall's at a bargain price. They're not a high thread count. They don't feel silky or luxurious. In fact, they're wrinkly and crinkly. They feel crisp and clean.




They are my early childhood memories.

Sheets on a clothesline billowing in the fresh air and gentle wind.

The sweet smell of  ripe purple grapes in the arbor in our backyard.

The sight of the bright yellow forsythia bushes covering the chain link fence in our side yard.

The tart taste of the rhubarb growing wild along the side of the garage.




They tuck me in. They transport me. They renew my spirit. The comfort sheets.

At a Loss

I don't know exactly how to describe the last several months. I'm still a little stunned really, that Michael's seizures have spun so out of control and that all the tweaking of meds up and down and CBD adjustments have given us just a few decent days couched by days with horrific clusters, falls and near falls, and extended seizures. I am terrified that we can't seem to get this beast under control- that our original projection of returning to our imperfect, though blissfully better, normal within a few weeks of the November 3rd  fall has stretched into the final week of February.

I am convinced we will figure out a solution to this. I am most grateful I can even think that based on our past experience. We are working with an excellent neurology team and though Michael has been on over two dozen meds during the past 26 years there are still a few we haven't tried. I'm not adverse to trying a new drug. My goal has never been to be pharmacy free, rather it is to be seizure free (at least while awake) with a minimum of medication side effects.

Michael is weary of seizures, of having us too close by to ensure against more harmful falls, and probably just weary of us in general. We are weary too---of constant vigilance and reminders, of days where resentment toward us for trying to keep him safe and get him returned to baseline is the mood of the day, of watching his body writhe in the throes of an extended seizure or of seeing the aftermath of a catastrophic fall which we damn well know will land us in an Emergency Room and probably result in a hospital stay. Yes. We are all weary including my mother who has been here every step of the way since November 4th. She has long since stopped asking "how do you do it?" or remarking " I couldn't do it".  She accepts we do it because that's what we have to do. It is what it is. We aren't heroic, not better or worse than any other parents. We just want the best for our children. Period.

I lost it a little bit in Michael's hospital room this morning. I was totally discouraged by Barry's report of multiple seizures while awake last night. I rushed him out of the room and sat in a dark corner looking at our son and holding back the tears. Ralph, the EEG tech who we've known for years, came in the room, sat in the chair across from me and acknowledged the EEG wasn't looking any better. His empathy enveloped me and tears fell. He softly said he'd be back later. I allowed myself the luxury of a simple  cry. Then, our day shift nurse came in. She recognized us from our stay in December. "So- have things gotten any better since December?" I tried to reply but it got lost as I choked back tears. Shorty after that Michael woke up. "It'll be OK Mom".

It'll be OK. I'll hang on to that.