On Monday, October 22 I had an endovascular embolization. Long words for saying they would thread a catheter from my groin to the base of the tumor (it is to be hoped, carefully) then put little bits of metal (?) into the base of the tumor, starving it of blood. This makes excellent sense to me. A less bloody field to work in, as they described it, and I was entirely on board with the concept.

Now, here is a fringe thing that happened. The specialist who was to do this, described to be the absolute BEST at doing this…in fact this is ALL he does, now, shows up bedside. And this is a cute man. There are very few men I find attractive (Kenny is obviously top of the list) but this guy is adorable. (One note – I have not seen this doctor sober. Me, not him.) They had given me meds to keep me calm. Combine the meds with the fact that I want to think this guy is Superman, it’s closing time at the bar and I want to go home with somebody.

So, Dr. Cute comes in, describes what he is going to do, how he will do it, then assures me that MY case is like Embolization 101 and this is the kind of thing you train students on. I am alert. I make him promise me that, while this is the kind of thing one COULD train a student on, he would not be doing that with me, and his own little cute self would be doing it, personally.

Thus assured, we move on. Kenny’s notes of that day:

Endovascular Embolization. Procedure will happen at 1:30 pm. Will last 2-5 hours. Then about 2 hours in recovery. After that it's off to ICU until surgery on Wednesday. She's in fairly good spirits. Symptoms get worse by the hour. More later. Best to all.

Embolization procedure went well. Doctor was pleased with the outcome. Cynthia is in recovery now. Should be headed to ICU in a few minutes. Surgery still scheduled for Wednesday.

Reading this, now, the line “symptoms get worse by the hour” jumps out at me. Really? Kenny assures me this was true. Did we jiggle something loose? Was the tumor finally pressing on something important?

At the time, given my determination to be the most adorable patient EVER, I didn’t really notice. One memory I do have of that day is that someone said the bits they had put in my brain were metal so I could never have an MRI again. But maybe that was never said – maybe it was the drugs talking.

But, a month or so ago, they ordered a follow up MRI and I called EVERYBODY involved (at least twice each) DEMANDING them to tell me whether I could have an MRI and would my brains squirt out of my ears if I did. And they assured me that it would be fine, and I wouldn’t believe them so I would call someone else. The old me would have taken their assurances. The new me did not. Happily, my brains did NOT squirt out of my ears.

Let’s jump from the play-by-play (we’ll get back to it) to some thoughts about recovery. “Experts” say recovery from TBI can take one to two years. That assumes you are going to HAVE a recovery. And, after spending time in the hospital rehab and six months outpatient at a specialty neuro rehab, I can tell you that “recovery” is an elastic term. A FULL recovery, where you go back to whatever you were doing, at full speed, is estimated for 5-7%. From there, you are compromising what you USED to do and who you USED to be, to a greater or lesser extent.

I would like to think I’m in that upper percent, and maybe I am. But I find that my personality and priorities have changed so much, I cannot go back to my old life – not because I can’t, but because I don’t WANT to. I want more.

In this past January (2014), after 14 months of recovery, I wrote these thoughts (a bit dark but I told you I would share the fringe of recovery with you):

It may be that I am in a particularly difficult phase of recovery.  That must explain this mental jumble that I’m in.

First, there was the acute phase, filled with drama and worry and attention.  Breathing?  Not breathing?  Walking?  Walker or cane?  Headaches?  Feel good, not good? 

And the people around me!  Lovely, mostly all of them. 

Worried about me, ready to help.  Concerned…

Then you move into a plateau phase…still working on strength and stamina.  Still some symptoms, mostly not.  Tremors, shaky, losing the occasional word, finding it again.  People…amazed at my recovery…cheered that I’ve come so far so fast.

And now.  I told someone the other day that in my life I had always assumed there would be “more” – another job, another project, another flight to make, something else to do for the children.  Then, you enter the period of “less” – you become a “consultant” to everyone else’s real world.  The children don’t need a consultant, they need a friend with money.

And now there is the period of “none”.  My emails are all spam or sales.  An occasional friend message.  The phone rings, occasionally, from bill collectors.  And friends, but fewer.

Contact becomes self-generated, but one has to wonder whether people are really glad to hear from you.  Perhaps my calls are an annoying disruption in their day.  I suspect that is true.

It is a cure for the ego to find that not only are you not irreplaceable, most people haven’t noticed your absence.

But there are some who don’t fit this analysis.  A few.  A husband who is a saint, precious family, friends, if you are lucky like me. 

And then you think…this is a stage in the recovery.  This is a “gathering in” – like cooking an egg white.  Your self, a new self, solidifies around what you have NOW. 

This is an interesting idea to mess around with.  One of the therapists at rehab was delighted by the idea that what they were doing was teaching people to do the same things they’d always done…but now with a different brain.  The connections are different.  It’s true.  I can feel that my brain has been re-wired. It is as though while I was in the coma, someone came into my brain, painted the walls a different color and rearranged the furniture. It’s home, but different.

My mental and emotional responses themselves are different.  I find I don’t care so much about what others would think.  I find that I am evaluating my life and finding myself to be pretty lacking.  I missed countless opportunities to be the bigger person, to do good, to be kind and generous. I allowed myself to be abused by a host of people and situations.  I put up with things I should never have.  I was too kind to people who didn’t deserve it. 

Now, here in the doldrums of recovery, self-reflection can be a bitch.  Doldrums are a real thing…when the wind stops blowing and you are there, in a sailboat, unable to move.  Think of the Ancient Mariner and his bird.  You are here in the still water, waiting, waiting, for the next puff of breeze that may send you in the right direction. 

But what if there is never any wind again?  I suppose it could happen, or I could die waiting. 

I want MORE.  I don’t want to be bored any more.  I don’t want to want a nap.  And yet, I’m sleepy.

It is the everydayness of this that will get you.  The Tuesday night of the soul, when your spirit joins a bowling league.  But it is this same everydayness that will save you.  You go to the gym because that’s what you do, now.  You find the REAL things you can cling to with all your heart and all your might. You love who needs to be loved, and some who don’t, because you have so much more to do.