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Our digital selves

Early on in this process I gave Jon an iPod with his favorite music to stimulate his memory. As he gained more and more alertness and lucidity, he began to get perplexed because he was looking for his usual apps--email, messages, etc.--but they weren't there on the device.

Now you don't necessarily give someone with a brain injury access to the all their usual things. Working back to complex decision making (processes that take multiple steps, not Middle East peace talks) is going to take a while. But I figured the most he would do is delete a bunch of his own emails, or take calls from telemarketers, so yesterday I gave him his phone back. Here's what happened.

He took random photos: his feet, the meal tray, a partial selfie. He's become a millennial. A short while later, he must have deleted them, because they're no longer in the phone.

He texted his brother, Al: "Hi Al"

He answered a text from one of the tenants:

Tenant: Hey Jon I really need you to fix the oven it does not work.

Jon: Willdo tgrcngp

Tenant: What?

Me (borrowing the phone): Sorry Jon has his phone back you might get random texts--he's recovering from a stroke--Min

Jon: I was never at an attraction

Jon: Hey -- you are ok???

Jon: Sure...Hey sure you are ok?

Tenant: You are texting me some shit

Tenant: U keep face timing me what's up

At this point I texted the tenant from my phone to clear things up. He was very nice, said Jon is a really nice man, take good care of him, he's also had family members with this type of health issue.

I think you become a slightly different person when you've been involved with the care of someone with a neuro issue. We don't normally dive into the complexities of the brain on an everyday basis (unless you're a neuroscientist or medical professional!) Making a cup of coffee involves something like 25 steps: identifying the coffee bag, opening it, scooping the grounds, identifying the coffee machine, etc. I'm discovering that having patience with physical and cognitive progress is a learned skill, too. Bear with me, guys, I'm hard on myself, on the kids, on family members, because I'm saving all my patience and understanding for one person. I'm opening up new parts of my brain, too, and it is sometimes a draining process.

Writing this all down, storing a digital version of ourselves, is my way of taking a long-term selfie. Every stage of a long-term relationship is different anyway. We're not the young New Yorkers, not the couple with the baby, not the couple from Fort Lee in apartment 8P with two little kids, not the new transplants to LA. Without the stroke, we would have been the "edge-of-empty-nesters" getting ready to send off our oldest to college. We are all those things and none of those things all at once. It's always a little sad to put those stages in the memory box and say goodbye. But we can always look back, see how good we looked, how much love was there, how busy we thought we were, and be happy at what has been gained in the process.

You have to love the process because it makes you who you are.

I will love you in every stage of this process, I will love you at the end of this process, I will love who we become.

Always,

Min

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