I’m not sure how to begin here, as it’s been rather a long time since I last wrote anything, let alone posted to this blog.
It has been a wonderful and exhausting spring and summer and it’s leading to some pretty major changes going forward, but as for the subject of this page, Jacquelynn is doing quite well indeed.
I’ll describe a couple of the “epiphany moments” shortly that lead me to speak so joyfully about her improvement, but it is important to understand that there are also frightening and even horrifying moments still occurring. She is indeed much healthier and sharper than has been the case for a very long time, but she still struggles mightily in some ways. The most significant of those is in expressing herself. Jacquelynn frequently labors intensely to find her words, and sometimes the words that do come are so completely unrelated to what she’s trying to say that it can be difficult not to despair entirely about her recovery. Of course, as she tries harder and harder, she gets ever more agitated and it gets harder and harder for her to find the words.
So, I sometimes try to help. It’s hardwired into me; I can’t just sit and watch her struggle and get madder and madder. So I “help” by asking if she’s speaking on this subject or about that person. However, she’s so focused that she dismisses any such suggestion out of hand and keeps trying to find her own sentences. But, as I asked if she was referring to lunch and she said “no”, I’m no longer thinking along those lines and it takes even longer to get back to the subject of what we’re going to eat for the midday meal.
Yes, I’m trying to curb my need to help in that manner. I do realize that it’ll likely do her more good to get there organically rather than being led. But it’s awfully damned hard to do.
This last Thursday, July 26 of 2018, provided an infuriating example of how hard it can be to lead her and how working so hard to get somewhere specific can lead her into a heartbreaking catch-22 of fury and tears.
We had an inordinately aggravating experience with a credit card company: in brief, after receiving an alert text about a possible fraudulent charge to our account, I called the alert desk and began a runaround that still has my head spinning.
I should interject here with an important little tidbit of information; we had my name put on the account two years ago so I could deal with these situations if one should arise.
Combining Jacquelynn’s occasional difficulty expressing herself clearly with the fact that we had awoken only moments earlier (it can take her upwards of an hour to get her momentum going and feel fully awake), the downward spiral of identity verification because the account is in her name (even after they acknowledged the information italicized above) is pretty predictable. Heeding the suggestion of the fraud desk representative, we went to the store (it’s a Meijer card) to allow the manager there to verify her ID so I could proceed to manage the account. We did all of that, and HUGE kudos to the staff there; they went above and beyond in their ultimately fruitless attempts to help. The issuing bank refused to recognize the store’s verification even though it had been their idea, and their escalating badgering of Jacquelynn over the phone even after her medical situation had been explained led her completely over the edge. The more they pressed her, the more shaken and nervous she got, and their only slightly veiled accusation that I was feeding her information to attempt to gain access to the account were the last straw. In my opinion, they had by then made it painfully clear that they essentially didn’t want a customer with her medical issues. She was a total wreck when I finally drew a line through the process and did what I could to close the account.
I feel like shit for my part in allowing it to continue as long as it did, but we’ve really needed that card this last year. Life leads us where we need to go, though, and I fully believe that life led us to close that account for very good reasons.
Now, I recognize the need to protect these accounts and the personal information associated with them. I’m honestly grateful for their diligence in this matter. But this is the EXACT reason we put me on the account two years ago, and even after acknowledging that, they still refused to help. Maybe they technically didn’t do anything wrong, but they sure as all hell didn’t make any legitimate attempt to help, and that means everything to me.
But, as I implied earlier, many things are truly looking brighter and brighter, and one of those things is subtlety.
Since before Jacquelynn’s diagnosis, her understanding and perceptions have been pretty much strictly literal. Innuendo, hints, subtext have all gone entirely unnoticed and unremarked. In the last few weeks, however, I’ve noticed that changing. Slowly at first, in fact slowly enough to cause me to question my own impressions. But just a few days ago, while we were discussing my woodworking, she chuckled out loud at the inevitable boner joke I worked into the conversation. Her sense of humor and perception of it has greatly increased as her brain continues to heal. This leads to more flirtatious behavior on her part, and probably inevitably, a bit of confusion as she perceives more layers to each conversation, whether they’re intended or not. Now, I can barely say “wood” without eliciting a slightly naughty grin.
So, the nuanced and slightly dirty mind I fell for 19 years ago (celebrating the anniversary of our first date this week!) is making a return, and that is a very good thing. Every bit as surprising and exciting is another aspect to that which has returned these last few days, as well:
Typically, over the past months, Jacquelynn has had a very difficult time following specific instructions. For example, as she tries to help with cleaning the kitchen after dinner, she’ll ask where to put things. If I tell her “on any shelf in the door of the fridge”, I’m almost always going to find it on the top shelf of the refrigerator, or simply left on the counter. Same goes if I ask her to get something for me; “The red cups, right there on the shelf. They’re right in front of you, Love.” Nothing. I’ll swoop in, trying so hard to be mindful of not making her feel like she failed, and retrieve them myself.
Lately, though, not so much. The balsamic dressing makes its way right back to the shelf in the door of the fridge, and when I asked her (I test her this way frequently, to try to hone her skills a bit) two nights ago to get me something from the bathroom counter, there was no casting aimlessly about trying to find it, no “what color is it again?”, no delay whatsoever. She simply walked into the bathroom and came right back out with exactly what I had asked for!
The brain is healing! Yes, it has much more healing to do, but it is clearly and (in my view) undeniably continuing to heal.
Life does (and will) continue to throw challenges our way, but as we fully embrace the concept that life happens for us rather than to us, we know that wherever it leads us is truly for our greatest advantage and blessing.
It is possible to balance Joy and Fury. The how of it harkens back to an old and seemingly cliche Native American proverb:
A grandfather is talking with his grandson and he says there are two wolves inside of us which are always at battle.
One is a good wolf which represents things like kindness, bravery, and love. The other is a bad wolf, which represents things like greed, hatred, and fear.
The grandson stops and thinks about it for a second then he looks up at his grandfather and says, “Grandfather, which one wins?”
The grandfather quietly replies, “The one you feed.”*
Feed the Joy, and try very hard to starve the fury.
*Credit to oneyoufeed.net for the quote