29-The magic continued!
Updated: Dec 23, 2020
Continued from #28
(Wendi) Yes, I’m married to a smart and loving man. And, it was my pleasure to work alongside him. We work together in our consulting business (and do it very well), but this was a different kind of challenge for us. This was an opportunity for him to draw from experience and expertise developed long before he knew me. This week for me was sort of like being the assistant to a magician. Thrilling. And I can be a pretty good assistant when I need to be. For example, I know my way around Amazon and was able to get some fun and colorful teaching tools delivered within a day. I was also committed to the idea that involving *Alex somehow would help awaken Brianne’s brain further.
We developed some simple exercises following the concepts Bill outlined above. Within just a couple of days we were seeing progress. Brianne was, sometimes, able (or willing) to point to colors and shapes and push communication buttons. She seemed to alternate between three states with us:
Focused and cooperative,
Focused but purposefully resistive, or
Spacey and inattentive.
We kept a daily journal which I won’t insert here. But here is one of Bill’s particularly important observations:
Cooperation: Simple incentives to cooperation, such as rewards (e.g., chocolate) or praise, are quite inconsistently effective, and mostly ineffective. What would be easy to infer – as I do – is that we’re dealing with a very depressed person. The sense of loss and helplessness must be profound. And we believe there are underlying negative issues related to the relationship with her husband. Brianne is also having problems sleeping. This would only make things worse.
We quickly learned we needed to do things to elevate her mood and give her an emotional lift before asking her to do an exercise. We did this with the right kind of conversation, sharing a short video of something we knew she had liked prior to surgery, or talking about *Alex. This two-step approach became key to making progress (elevate mood and then quickly request something).
When we got positive results, they were really reinforcing for all of us – especially Brianne. Progress continued. Brianne was able to do things like:
Recognize basic colors. We’d ask her to point to red, blue or green and she would (she could barely lift her finger to point, but she did it),
Read basic words. We’d ask her to point to the word we said (out of three options) and she could. Caveat: She did not like this exercise until we included *Alex as one of the three words. She was happy to point to his name if we asked her to.
Answer basic questions by pushing the right button. We pre-recorded a few basic answers and she quickly demonstrated she could select the answer she wanted.
Begin to walk with help. Brianne had an awesome physical therapy team. This was the week they began helping her first sit up, then sit in a chair, and then begin to walk. By the end of the week, with help, she could move slowly with a walker. Wow!
Hold a spoon and sip from a straw. Motor skills were by no means perfect, but she would ramp up very fast.
Show emotion purposefully. There was a distinct difference in her facial expressions when she seemed to be pleased versus when she was upset. This was helpful. By the end of the week Brianne smiled and laughed, too. Her dad and her siblings were committed to making this happen. And they did.
I think it was Wednesday when we felt like she might be close to saying something. We took her for a walk outside onto the hospital patio. It was almost too warm to be outside that day, but we didn’t want the likely interruptions of medical staff when she’s in her room. Over the last couple of days, we had been gently reinforcing the idea that she needed to show us she could talk if *Lennerd was to even consider letting *Alex come for a visit. Neither Bill nor I can remember exactly what caused us to think the big moment was coming. But we both felt it.
Bill got his camera out and I got up close to Brianne to coax her into answering a yes or no question. The main question was, “Do you want to see *Alex?” She clearly said “Yeah!” I asked her one more time to be sure that’s what she said. There was no doubt. It was clear. She even said the word “no” upon request. This was a moment we’ll never forget. Bill and I were crying and almost stammering because we were so filled with joy. Our sense of hope skyrocketed. I think Brianne knew how important this moment was, too. Seeing *Alex was now a very good possibility.
The Highlight of the Week
Bill spent more time with *Lennerd and his parents after the 'big speaking' moment with Brianne. Thank goodness we had the proof on video. *Lennerd finally agreed to let *Alex come for his first visit to the hospital on Friday. *Lennerd remained skeptical and felt sure it would result in a terrible emotional experience for *Alex.
While Bill was working with *Lennerd’s family to prepare for the visit (and ensure *Alex was appropriately prepared), I worked on choreographing the other details --- where *Alex should be placed on the bed, making sure the right kinds of toys were available to keep him occupied when needed, verbally preparing Brianne to see *Alex, etc.
We also got a lucky break. Brianne’s tracheotomy got removed prior to Friday. This was wonderful for so many reasons, not the least of which was that it helped Brianne appear more normal for *Alex.
The *Alex visit was perfect and very emotional for all of us. *Alex was really happy to see his mom. He gladly sat with her on her bed. He hugged her. He shared his drink with her (and she was able to sip from his straw). She was sitting up and was clearly full of joy to see him and touch him. She moved slowly, but she was also able to put her hands around him and hold his back. She even held a toy when he handed it to her. They both were so happy to see each other. I know she wished she could have expressed her feelings better on that day, but her smile, her few words and her small movements made her feelings quite evident. And *Alex related to her so beautifully. Not a problem at all. Strong and loving *Alex was this week’s hero. He gave Brianne the reason to fully awaken and begin pushing forward.
Watching the two of them together was almost unbelievable when we thought about the mostly lifeless Brianne we saw only five days earlier. This week early in Brianne’s long journey surely had a few miracles, but as time has gone on, there have been so many more.
Attitude is Everything
With the exception of our one week with Brianne and her family, we’ve mostly been sideline observers of Brianne’s journey. We have such deep admiration for Brianne’s parents and her grandmother, Joyce. They are the real enduring heroes in Brianne’s story. They have dedicated every day to this effort, researching and leveraging every possible resource - traditional and non - to help Brianne’s continued progress. They never gave up and we did get Brianne back.
Bill says it well here in his note on “experts” and attitude:
I’d like to add something to what Wendi has written above. Experts, when they run out of options, often declare that the patient has run out of options. If pressed, they’ll mumble something about not wanting to give false hope. Believing them is attractive – not because you like their conclusion, but because you hate the ambiguity of thrashing about for uncertain alternatives, on top of the existing stress of the problem. You just want clarity. You just want The Answer, no matter what the heck it is.
Dale and Michelle took another route, which is all about attitude. They kept trying different things, from very different sources, many of which surely raised the eyebrows of Brianne’s traditional medicine experts. Wendi and I were honored to be in that mix. But Dale and Michelle’s attitude (and fortitude) to keep trying different things is what saved Brianne.
There’s still a long road ahead but Brianne is a wonderful mother to Nate and is enjoying life more than most thought possible four years ago.
Thanks to Brianne’s incredible strength and her family’s commitment to finding solutions, so many others struggling with traumatic brain injuries can and will have better lives. #BecauseofBri, the world gets better every day.