Titien and I have a mantra that we’ve been following at least since her being dignosed with DIPG: live in the here and now. What sounds like a hackneyed phrase from the self help literature is actually meaningful to us. We have realized how valuable the time we have left is.
We have made conscious decisions not to spend time thinking about the past. Or about the hypothetical case that Titien would not have been diagnosed with DIPG.
Nor is it worth thinking far into the future when the prognosis is two years at most. If we had goals, then it was in the short to medium term at most.
Celebrating Christmas once again. Making the family reunion to Korea. Meeting the friends in Barcelona. Seeing Israel. We have done everything. The final goal was Titia’s birthday on June 24th. Now we don’t set goals anymore.
But how do we live in the here and now? A year and a half ago I put it like this:
“One extreme is to live each day as if it were the last. The other extreme is to ignore the disease and carry on as if nothing was wrong. My third way is pragmatic, reflective. I take our time together much more consciously. Everything takes on meaning. Her third way is spiritual. She reads the Bible and writes about her faith.“
Now that she has less and less time left, I don’t know exactly what it means to live together in the here and now. Aren’t I there enough for her when I have project meetings on Zoom during the day and work on texts for short films about science communication?
Do I waste our time together when I play around with my mobile phone the breakfast table? Or when I listen to podcasts over headphones? Or is this the compensation I need to avoid becoming depressed or crazy?
Does time become more and more valuable the less you have of it, or does the value of time remain the same once you become aware of its finiteness?
When I took care of my mother for her last year and a half with pancreatic cancer, I had a rescuing shore in sight long before she died. I could imagine what would happen afterwards, what we brothers would do with the house, that I would move to Karlsruhe.
Now with Titien, there is no land in sight. In the here and now, there is only water. I notice how the wave builds up behind me. Eventually it will break, and then I get washed ashore somewhere. I’m a good swimmer.
Original article published here: https://weitergen.de/2020/08/wie-geht-das-hier-und-jetzt/