Each one of these snippets could be a whole post in itself if I had time to write it in juicy detail. 

I want to tell you about how Ari went with his PT, Omar, to a nearby gym to practice climbing up and down a ladder with the safety of a harness (Ari has ambitions to get his old loft bed back) and while he was at that gym he saw a climbing wall and asked if he could try it and... see the video!! Afterwards he texted me, “You should consider asking Omar to schedule another day of rock climbing. Because it was fun enough to count as mental health therapy.” And boy oh boy do we need some good mental health therapy. 

I want to tell you about our daily struggles with deep depression and our new relationship with psychiatrist and researcher Andrew Krystal who directs UCSF’s Sleep and Mood clinics. We are hopeful this will be fruitful for Ari as Dr. Krystal seems to know his stuff, and to be both evidence based and open minded. Among other steps we are taking under his direction we will be trying ketamine assisted therapy this week. 

I want to tell you about learning about IV ketamine vs intramuscular. How almost all research has been focused on IV Ketamine, which is done in a more medical setting without much psychotherapeutic scaffolding; scaffolding which, in Ari’s case, would seem a necessity.  With the help of an introduction from a close family friend, we are going to be trying KAP with Phil Wolfson, head of the Ketamine Research Foundation, Monday morning! 

I want to tell you about the Brain HQ neuroplasticity exercises that Ari and I do almost daily. Ari’s neuropsychologist gave us both accounts so when Ari sits down to do his, I sit next to him and do mine, both to motivate Ari and so I can empathize -- they are really hard and tiring, but I can feel even my old brain getting stronger as I do them. 

I want to tell you all about our visit from Cavin Balaster, TBI survivor turned functional nutritionist and author of How to Feed a Brain. Cavin lives in Austin and came to SF to spend a week collaborating with Jacki, Ari’s home OT, after we introduced the two of them. On Wednesday Cavin and Jacki came to Erik’s for dinner, not only so Ari and Cavin could meet IRL, but also to see if they could meet Ari’s challenge of “Making a keto dessert I actually like” and to celebrate Cavin’s 13 year “Comaversary”,” the anniversary of the day he fell off a water tower in Brooklyn, and suffered a severe TBI that forever changed his life. Now Cavin is a walking, talking miracle and, dare I say, I think he meets Ari’s high standards for having drippy (aka stylish) good vibes. 

I want to tell you how Ari’s friend Davis came to visit, first on his own and then again with their friend Katie, and both visits lit Ari up, reminding me once again how Ari’s top priority has always been his friendships and how terribly isolating this year has been for him. I mean, hanging out with parents, family and therapists, even young and cool therapists, just isn’t the same as hanging out with friends. 

I want to tell you that when I text Ari’s friends to see about setting up visits and I don't hear back right away, I feel like a teenager who just asked someone out for the first time and is trembling with fear of rejection. I’m so scared that Ari and his friends won’t be able to maintain their friendships and or he won’t be able to develop new ones and I know that for him friends are the manna that feeds his motivation.

I want to tell you that the last couple of weeks have been way harder than I could have known. This time of year, seeing prom pictures, knowing that the high school graduation Ari would have had is just days away, remembering what that Senior Spring was like for me and my friends, how excited we were to be heading off to our respective colleges, the stupid teenage adventures we got up to, the end of senior year romance dramas. When it dawned on Ari that, if he is able to go back to school in the future, none of his friends will actually be there, well, that was pretty darn devastating. 

And I want to tell you that we got a gray tuxedo cat and named her Maxine. After philosopher Max Stirner and also after Ari’s friend Max. She is warming up to us and her new home but has yet to sit on our laps. 

                                                                                                                ~~~

A year plus 3 days ago we had just arrived via air ambulance at Spaulding Rehab Hospital in Boston. Ari was almost completely immobile, had a tracheostomy and a feeding tube. His only method of communication was to move his right leg for “Yes” and stick out his tongue for “No.” A feat that made me deliciously happy. To have communication after six loooooong months felt monumental. 

Now Ari harangues me daily with poetically expressed pleas for sleep, respite from therapies, and something, anything to help with his feelings of hopelessness. I feel so connected to him that when he is in the depths of despair, I can fall down that rabbit hole with him. Thursday afternoon Ari was feeling bereft of all motivation, and like he wished he could just stop being, period. We were both just puddles of sadness, and it felt like this too shall perhaps not pass. While we sat there with tears welling, Ari looked at me, offered a “two-armed hug” and told me that it’s the love he feels from me, Erik and the many family and friends who he knows care about him so much that prevents him from having what he terms “A romantic encounter with the drywall” (aka bashing his head against the wall in an effort at self-harm or worse). Then a few minutes later he sent this text:

“I just want to take a moment to say how ineffably i love all of y’all and how you all have been possibly, no, most certainly the strongest contributing factor towards how I’ve  handled my recovery. I will never lose sight of that fact, no matter what hurdles life throws at me. 

Honestly y’all, im getting emotional just thinking about how much I love y’all. Happy tears are running down my face.”

From super duper low, to happy tears in just a few minutes. The frequency of the roller coaster's highs and lows has increased to the point where it feels less like a roller coaster and more like whiplash. It’s a new stage, but if we’ve learned one thing about these stages, it’s that they don’t seem to last all that long, calendar wise, no matter how long they feel inside. 

So we are buckling up for a big week... onward. Deep breaths. 

Oh, and Happy Mother’s Day. Of course, Happy Mother’s Day!!!!!!

I salute all mothers and all parents everywhere who are doing their best to help their children through whatever tough hand the universe has dealt them. 

Maryam 

On behalf of Team Ari