Scary Good

Sue’s Delivery of News Needs Work

Yesterday afternoon, I get a call from Sue… but am not able to answer. She immediately calls back and I can’t get to it. She calls a third time. Now I’m scared. She, obviously, is desperately trying to reach me. I know this won’t be her normal call of: 1) checking in on Ryan, and 2) giving me a list of annoying things to do. So, I solidify what I am doing with Ryan and answer.

She’s bawling.

I feel fear run down me, from head to foot, like someone just poured a bucket of paint on me. I immediately do something I have learned — over the past year-and-a-half — to prepare myself for bad news. I mentally “step outside” my body, disengaging myself from emotion and fully falling into the purely logical. A mindset that protects me from being crushed. I wish I could explain this better, but I’m not sure there are words (at least not in my vocabulary). Really, I think you probably need to experience it to understand what I’m saying.

I’m begging her to settle down and a least give me a flavor of the news. She says “I just got off the phone with IBRF”.

Well, here it comes, I think. More bad news in a 18 months of bad news. I’m totally in mental and emotional lock-down. No fear. No sadness. I know I have successfully shielded myself from heartache. Nothing can hurt me. At least not in that moment.

I become stern: “Pull it together. Now.”

Fear Melts into Relief

Honestly, I have no specific memories of our conversation. It’s like an impressionist painting… not entirely clear, but conveying a theme. The brushstrokes had painted a hopeful picture.

Renoirs "Boating on the Seine". My favorite of the Impressionists.

You know, the more I think about it, it might be better to describe it as a charcoal sketch. Absent of color and detail. I asked Sue to write down her interpretation of the call and email it to me.

The Actual Email Content

Basically… (keep in mind I don’t understand the medical terminology and my hand was shaking the whole time they were talking, so take my interpretation as such)  …they said the qEEG from Jan to Apr was very different.  It looked like a different person.  We shouldn’t jump to any conclusions, but he is showing signs of recovery.  I think they said the “delta waves” were stable now, but he still has excess waves.  These need to go away from him to wake (I think).  I think they also said there were no alpha before, but now there are some (not nearly enough), but some.  The beta & high beta are showing abnormalities of the front part, cohesiveness (I think) which leads to difficulties with communication.  They want to do the next qEEG in mid-May and will be sending him to the Meadowlands for some scan that can show the electrical mass of the circuits in the brain (only 3 of these machines in the world).  They are going to continue to adjust the medicine…although he is on 47 different things, they are selected and modified with precision as they are all working together with the therapies to re-organize the metabolic functions of the brain.  Provigil is next drug to be added. We are also going to use the laser starting next week to also function on the frontal lobe…the doctor team from the IBRf is amazing (they didn’t tell me that – that’s my commentary).   

 Love ya!

Ahhhh. The colors begin completing the picture. Ryan is still recovering. “A different person”. Nowhere near ideal, or even acceptable, but better. Hope. Promise.

For Sue, Kari, and myself, it was the best day in what is an eternity.