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Portrait of the Artist as a Disabled Man

I want to say thank you to all the readers who have reached out to me in encouragement and support, often sharing personal stories of their own. I know I don’t often get back to the posts and emails, but I do read each one. I have been deeply touched to read your words. I’m moved and grateful. It’s been a very strange season-within-a-season lately and knowing I’m not alone in it, knowing my trying to process  my thoughts about Vernon’s (and our family’s) situation at least makes sense to others is incredibly validating.

It’s a mystery how Vernon can sway from the edge of death (in my eyes) to progressive clarity in a day. It’s a mystery why some days are better than others. Holding all that flux in one’s head…from death to life…from grief to gratitude…suffering to joy…and then potentially back again in a moment.  It’s a bizarre thing: keeping one reality close to your heart while you are experiencing the opposite. There somehow is space in the human heart to experience all of this at once. Although we try to avoid it, when we experience it (especially in honest company with other caring people) we realize this IS the human experience.

Ok…that was meant to be my introduction to a whole other set of thoughts, but I’m so long-winded, it became a blog post in itself.

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Ok, here’s Part 2… (with a nice picture of Vernon today to break things up.)

I must give some credit where it is due. That really hard Saturday a week ago, when Vernon was hitting bottom, I wasn’t alone. My dear life-friend Nicole was with me. After he left dialysis without ever getting plugged in, I tearfully grieved for hours. I’m sure it felt better because she was with me. She came again on Tuesday: we marveled together as Vernon so lucidly spoke about wanting to connect with friends on Facebook and with his son. My mind was blown, but I wasn’t alone—she was there too. Sometimes it’s sitting in the confusion together. You can’t make heads or tails…but you aren’t the only one.

I got some special emails from friends this week. Friends of Vernon, others, my own. Rainbow, whom I haven’t seen for over ten years, asked if she could drive down from LA and visit me? I told her I had a free dialysis day. She’d never met Vernon, but she showed up, donned her yellow gown, and hung out with us for the two hours. She then took me to lunch and told me a very heavy story about her own journey over the past years: it was different to mine, but filled with ups and downs and prayer. I could relate completely.

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photo credit: Vernon

Last night, another art school friend, Clay, texted that he and his wife were in town. How random! We met for breakfast this morning on the pier. I haven’t seen him in over twenty years, but we’d recently been in more touch because he also suffers from kidney issues. Dialysis and transplant list —what an ice-breaker after all these years, right? Just kidding, we mostly talked about the acting world and our old friends. But I was touched that in this week, several old friends from that period of my life had shown up. That period was a lifetime ago, but yet there is proof that I met some really awesome people during that time. And they’ve had struggles too. I was never alone.

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Photo credit: Justine 🙂

To top it off, Melissa came today…playing guitar and singing for Vernon while she let her son run around in the courtyard with Justine. I only hoped the shrieking of children hiding under their windows was more endearing than annoying to the patients in those rooms. Melissa and I have been close for a long time, so we are comfortable moving in and out of each other’s thought lives: the painful and the joyful. She can come crack jokes and sing delightful songs to Vernon and yet at the same time, she runs a blog about the grief of miscarriage.

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It just so happens that Justine has recently joined a theatre group. Its just a tiny space back in an industrial park by the freeway. I hadn’t even considered this sort of thing until a friend (who knows Justine well) suggested the connection. I tentatively brought her to the rehearsal, just sitting and watching with her, figuring it could go either way. But within the first few minutes of being introduced to the other kids, she felt the acceptance. She also felt the magic as she watched them playing on the stage. It was amazing to watch her start this connection with a new community. I remembered feeling some of that myself when I was young and then through the years: all those plays, all those weirdos I loved being around, all that openness, collaboration, acceptance. It suddenly became a good thing again, a pure thing.

So she’s in her first play next weekend. But it’s not about the play. It’s about the connections. That part never goes away…but it may go deeper than we know.

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The ducklings figuring out their props/costumes. The show is  based on The Ugly Duckling

 

 

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Show and Tell
Portrait of the Artist as a Disabled Man