Brain Injury and Building a New Life Afterwards

I once believed that I could not grieve for what I do not remember. I no longer believe that. I do grieve for what I can no longer connect with. Phantom memories. “Your pies!” “Your bread!” Friends tell me they miss my baking. One woman whom I still don’t recognize told me I used to shred beets into my chocolate cake batter. Her comment reintroduced me to an evaporated passion I no longer remembered and had not missed until then.

From a perceptive, and I think beautiful, essay on recovering from brain injury in the New York Times today. Baking bread was kind of a watershed for me. I couldn't muster the strength I needed to the first time I wanted to, but I could "coach" my wife through the job. A year later coaching gave way to frustration (and desire), and I got my hands in the dough. Now, I've resumed baking most of the bread for our house.

My literal and figurative use of baking is different from the author's, but there's much to recognize and respect here.

Brain injury rehabilitation is time-consuming and far from the sexy dramatics of pharma-funded clinical trials and fancy trauma toys. In other words, brain injury rehabilitation can be more complex than brain surgery. It is about forging new connections and experiences and learning to live with the dynamic, non-linear realities of my reconfigured brain. It is not about recovering inaccessible memories of my life before my accident.

If you want to connect with someone who has a traumatic brain injury, hire us, include us in conversations that regard us instead of speaking about us in the third person in front of our faces. And instead of pressing us about what we “must” remember from our past, simply be present with us. People with traumatic brain injuries are often scolded for having “no sense of time,” but the present is, for many of us, our only authentic time.

So when you see us, please don’t be offended if we don’t remember weathering earthquakes with you, baking your birthday cakes or bouncing your babies on our knees. We’re struggling to make sense of a world that seems brand-new — sometimes wonderful, often overwhelming — with all the courage we can muster.

Using the iPad 2 in Stroke Recovery

I found several news stories about how Florida Hospital Oceanside had been successfully using iPads with an aphasic stroke patient. Unfortunately, that application allowed the patient to touch an icon and a synthesized voice would communicate simple messages. That’s not what George needed, so I started searching the internet and the Apple App Store for more ideas.

I found another story on MSNBC about two Australian neuroscientists, Stuart Smith and Penelope McNulty of Neuroscience Research Australia, who had been using iPad, Kinect, and Wii games to make physical exercises less boring for stroke patients. Smith found that Fruit Ninja on the iPad was especially useful for improving fine motor control in patients. Searching the App Store turned up several applications that were developed for aphasic patients so they could tap an icon to have a voice speak for them. Best of all, I found an app that had videos demonstrating all the mouth and tongue exercises that would help improve George’s throat paralysis, swallowing (so he could have his beloved coffee again!), and speech.

From an engaging story about a stroke and use of an iPad in rehab and recovery. I wish I had been able to use an iPad for mouth exercises as suggested here—remembering the exercises and how to do them was an obstacle. I bet iPad would have been better than the static instructions I used; it could have used animations or video to demonstrate the proper technique. I'm using iPad to time exercise routines and sometimes as a reminder to take medications. I can see that it could be useful in setting reminders just to do exercises periodically.

I didn't start playing games until later in my recovery, but I watched a lot of Jeopardy as soon as I could and heartily recommend games for anyone working on rebuilding cognitive skills. I bet iPad can be really useful in recovering motor skills as suggested here.

And then I read this

It’s normal to feel sad at the passing of a legend. But in the long-term, the best response to grief is to change in response to the loss you feel.

I hope you will first think different about something today, and then take action to improve the state of the world.

No sooner than I released that last post, I saw these words from Chris Guillebeau. Technology doesn't feel like quite the right tag for either post.

Steve Jobs

“Creativity is just connecting things. When you ask creative people how they did something, they feel a little guilty because they didn’t really do it, they just saw something. It seemed obvious to them after a while. That’s because they were able to connect experiences they’ve had and synthesize new things. And the reason they were able to do that was that they’ve had more experiences or they have thought more about their experiences than other people.

“Unfortunately, that’s too rare a commodity. A lot of people in our industry haven’t had very diverse experiences. So they don’t have enough dots to connect, and they end up with very linear solutions without a broad perspective on the problem. The broader one’s understanding of the human experience, the better design we will have."

When I feel vulnerable about the possibility of failure, I try to remember this quote. I try to remember that vulnerability and connection are the heart of innovation. Maybe the greatest lesson on creativity that I've learned from the research is this: When failure is not an option, neither is innovation. Steve Jobs lived that truth. 

How could I not add my voice to the many appreciations of Steve Jobs being offered today? Before I heard the news yesterday, I had actually watched a video from 1987, the Apple Knowledge Navigator, which blew me away the first time I saw it and now I know was uncannily accurate. The vision, the persistence to stick to it, the ability to make it happen that Jobs had are amazing. But Steve knew his role and acknowledged in his commencement address at Stanford that he would eventually give way to new generations of leaders.

Of all the things I've seen today, this quotation and tribute by Brene Brown is my favorite, I think. Also notable are the person who wrote" iThank you," Roget Von Oech's observation that he finally understood why Apple called its new iPhone the 4S—it's for Steve, and Steve's own closing words from that Stanford address—"Stay hungry; stay foolish."

There's a remarkable image offered in tribute at Brene's blog.