Two more 2024 goals done and dusted... 

• Talk intelligibly with Siri  - Yes. It’s true. Ari can now bend not only Chat GPT, but also Alexa and Siri to his will. 
• Get rid of the g-tube -  April 3rd, Erik brought Ari back to the scene of (one) of the many traumas of this ride...UCSF Gastroenterology. But this time there was no possibility of a g-tube puncturing his peritoneum. It was getting pulled out -- gone, good-bye, sayonara, hasta la (hopefully-never-again) vista. In a way I’m glad I wasn't there to relive even a bit of that past disaster and thankfully Ari has no memory of that debacle. But in an even stronger way I wish I’d been there to belt out Scandal’s “Goodbye to You!” just as I did when we got rid of Ari’s trach. 

What does it really mean to live in the present moment? 

Here on the West Coast everyone is all about living in the present moment. No future tripping, no ruminating about the past. Be.Here.Now. The phrase conjures images of a smiling Ram Dass, dressed in white, beads hanging from his neck, peacing out. But what happens when you have only the Now? When you are actually stuck in the Now. And the Now Sucks? 

Two nights ago, we were sitting around after dinner and Ari started telling me how he has two or even three favorite therapists in each of the disciplines and what he liked about each one. He was smiling and chortling. It was delightful to hear how he loves Omar because he speaks Spanish with him, Mia because she likes Midwest Emo and Sarah because she’s “sassy.” He was feeling “fuerte” and sure that his recovery was moving forward apace. Everything was peachy. 

The next morning as we were finishing breakfast thoughts of those beloved therapists were nowhere to be found. He flat out refused to move from his chair or even consider going to CNS. His ”flexes” weren’t fulfilling, just being at CNS made him nauseous. It never made anything better, it only made things worse.  He was never again going to make the mistake of going there. Everything was bad. 

And there was no possibility in his mind that anything had ever been good or could be good. We were living in an infinite and infinitely terrible present. 

In some ways it reminded me of when Jake, our eldest, was an infant. Of course he was a perfect baby and never cried, but when he did cry, sometimes inconsolably it could feel to me like he would always be crying forever and into eternity.  I'd walk with him, nurse him, burp him, change him, bounce him, coo to him, put him in his car seat on top of the dryer to feel the vibrations, run the shower. But n.o.t.h.i.n.g. Would help. At some point in early motherhood it dawned on me that “this too shall pass” and that “this too” applied equally to the good and the not as good moments. So I had better enjoy the heck out of the good ones and release myself from any torment of the lousy ones. I wonder what it all felt like to Jake? He was a baby! When he was miserable he probably thought that misery was all he’d had known and all he ever would know. And when he was happy, well, the same - an infinity of happiness. 

I wonder if that’s what it is like for Ari? Being here now, for better or worse. Or as he likes to write, “Boy is the bitter bitter, but boy oh boy is the sweet sweet.” 

The double edged sword of the quantified self

Are any of y’all into the concept of the quantified self? I remember when I first heard about this notion of measuring everything about oneself and I thought it was ridiculous. Why would I want to spend my life measuring everything about myself? It seemed like self absorption run amok, navel gazing in the extreme. And tracking my kids? Well that just seemed downright intrusive, turning helicoptering into a full blown surveillance operation. Now daily we track Ari’s:

1. Food intake, quantity and specifics
2. Water intake
3. Supplements and medications
4. Blood glucose
5. Ketone level 
6. Bodily functions
7. Seizure activity (not all that often, but still we track it)
8. And of course SLEEP... both on the Oura ring and in a sleep diary

Today we were just asked to track his visual symptoms. When we get up to ten things to track daily do we get a prize? No? Oh well. 

I know we need to do it, we need to track all this, syncing the Cronometer app to the Practice Better App to the Oura App to the Libre Free Glucose Monitor app. It’s a daisy chain of apps plus a whole bunch of spreadsheets.Yet another exhausting aspect of this whole mysterious recovery process. Will one of these numbers hold the key to Ari’s resurrection? I sure hope so. Because boy is it a pain in the tuchus. 

And a few more flexes to finish

Ari’s Friday was rather magnificent on the flex front. Here is just part of the text exchange from the group chat Ari setup entitled “The Ari Flex Broadcast” 

Ari Blachford: 

Libby (CR therapist) is super excited about my pitch glides today. Apparently I did high to low pitch on one breath without breaking my pitch at all and this is a major flex. 💪 but I honestly don’t see it as that impressive bc it feels like a simple thing to do which maybe proves it is more a flex than I thought

And then in PT I chugged my entire 900 ml mug in one breath, getting ready to return to my teenage life

Today in PT for the first time I tried the six minute walk test with the low walker and I scored a total of 918 feet compared to 1060 feet with the big walker. The low walker is so much harder than the big walker.

(Erik Blachford:  That’s a terrific result for the low walker, Ari! For those who can’t picture the low walker, here’s a shot. The big difference is the way with the big walker he rests his upper body weight on his forearms, and on the low walker the weight is on his hands and arms, which means he has to engage his core for balance. Big difference!)

Ari Blachford: 

I also did a lat pulldown with sixty motherfucking pounds, I am preparing to return to the gym 

Grandma, ignore that, just focus on the sixty pounds, nothing else

In the OT fine motor assessment where I transfer small pegs to similarly small holes last time I did it in 62 seconds and the first time I did it in 205 seconds (get a load of that guy) whereas this time today I did the task in 47 seconds

In the OT test of grip strength my right hand improved by 66 pounds from 33 pounds of force to 69 pounds of force and on the left hand the first time I did 3 pounds of force to 22. Talk about improvement. My handshake could impress literally anyone

It’s a pretty good OT day 

In the visual scan task where I am matching a whole deck of cards I finished the deck in only seven minutes and thirty seconds as opposed to last time in which I did all 52 cards in ten minutes that last time was sitting whereas this time for the first time I did the task while standing 

To add to the flexilociousness of my day, in my intelligibility test, which is the number of words a stranger can understand when I speak, I scored a record high 86%, up from 60% last month, 10% in January, and 1% when I got back from Boston! I am getting ready for when I come back to school and give a glorious speech about my recovery process. 

I think Monica summed it up well: “And that my friends is how you master FLEX FRIDAY!!!”

Maryam,

On behalf of Team Ari