247. Kept in the Dark

Here are 4 of my children – this is how we spent the last 4th of July.

I don’t think I’m overly obtuse.  Nor do I purport to be the sharpest crayon in the box – especially now when my Lumosity scores are rather abysmal (more on that in a subsequent post).  But this whole Recovery process has been a non-representative cross-section of my mental acuity – one in which I very gradually come to understand critical issues that those around me seem to have already grappled with a long time ago.

For example, I recently had two separate conversations with Mommy and Ai Ai in which I posited that “I might be disabled for the duration [of my lifetime].”  This was not breaking news to either one of them.  Apparently I’m the only one who saw myself rolling my bag through the airport like I used to, or clicking around in my favorite red heels.  From what I understand, Mommy and Ai Ai comprehended the idea of my always needing some extra help and care when they were first confronted with the reality of my injury.  Although, they probably weren’t thinking that far ahead – they were just focused on praying that I’d wake up – that was the first priority.

After Ed’s 81^st birthday (The 1^st Anniversary of my bleed) I had a slew of appointments in which I gathered a few opinions that given my progress thus far, a full recovery would not be forthcoming.  This was devastating to me.  I was completely horrified to learn of the medical improbability that I would be able to run, jump, read, drive, work etc. like I used to.  So I took it upon myself to very casually break this news to Ernie and Ruthie over a meal one Saturday when we had gone to visit.  That’s how we do things in my family now (I think it’s primarily for my benefit) – if there’s any medical news to be shared, it’s done very casually, and with the preface that there is no cause for concern, and I am NOT to worry about it.  Ernie and Ruthie took it in stride.  I didn’t think of it at the time – I just thought that my casual delivery style had worked – but they had probably known this before hand.

Like I’ve said before, I avoid the language of medical certainty as a rule bc it’s up to God to heal me as much as He wants to, regardless of the laws of physicality.  So I’m not ruling out the possibility of me rolling my bag through the airport or running around in high heels again – I’m just saying that I know it’s a possibility and I’m okay with (actually, I’d be grateful at this point) using a wheelchair at the airport etc.

And then, of course, there’s the matter of the missing portion of my brain.  I was blissfully ignorant of the fact that anything had been removed for over a year.  A lady at Pool Therapy (the one who made the synchronized swimming joke), was a little appalled that no one had informed me that excision had taken place.  I was surprised when my neurologist had informed me of this, but Daddy piped up from his corner of the exam room and said that Dr. Dogan had emphasized that the priority had been for me to live (so it’s okay that I didn’t make it through with all my organs intact).

In retrospect, the removal was low-priority piece of news relative to what really mattered to my parents at that time.  When I was finally ready to read some of Tanpo’s emails I couldn’t help but giggle a bit when he was like, she opened her eyes!  She said “Aaargh! (my ST removed my trach and told me to produce a sound). She swallowed her own spit!  (Not kidding about that last one – or the others.)  And I’m sorry I giggled – but really, it just sounded so ridiculous!  That’s how I felt when I woke up – I thought everything was all just a misunderstanding.  But I know now my poor parents were anguished over this.  xoxoxo  But I like to keep things lighter when I can so they know I’m okay 🙂 xoxo.

When I first found out I felt like I had been kept in the dark a bit, and I was like, Ummm…that’s mine.  Can I get that back?   But no, it’s not coming back.  I made RMD1 tell me what would likely have become of a surgically extracted X (at that point I was only thinking of the AVM, not any surrounding brain tissue), and I’m inclined to think that it’s irretrievable.   (PS.  Props to RMD1 for not laughing when I asked him.  He was completely serious as he answered me.  A class act, really.)

So I’ve long decided that it doesn’t really matter.  In fact, I’m grateful for the fact that my understanding of the gravity of my situation has come in stages.  I look on it as the Lord shielding me from TMI all at once.  It would have been absolutely shattering for me to learn what I did later in my recovery at the very beginning.  I was still making people prove their reality – I wasn’t ready for anything else.  Sometimes I wonder if my plan of care would have been different had RecoveryLand been encompassed in one city and my medical team didn’t span two coasts and several hospitals.  But I know that all of this has happened on schedule and according to plan, and everyone I’ve been privileged to work with (even if I don’t remember them, or I failed to show my gratitude at the time) was there for a reason.

PS.  TMI – too much information

60. “It’s okay if the answer’s ‘No.'”