Tuesday, July 9, 2013

What’s my name?

What’s my name? It sounds like a philosophical question; something existential. It has taken on new meaning for me.

Where are we? I’m not asking because I don’t know, or am trying to divine a meaning, but it’s a repeated question.

Saum has a concussion. Sometimes she’s getting better; sometimes there is a slide backwards. She will forget events, names of people and pets, what room she’s in. This is scary, mostly for her, but anytime the memory goes it’s also scary for me. Today, she couldn’t remember the name of our dog, Barnabas. We made a sign for her to remember.

Sleep seems to help, but not always. There’s no one clear sign for her to revert back or to heal, but lots of heavy thinking: computer time, books, conversations with many people – will often propel her backwards. Our Alpha Stim machine helps clear her head. It’s bigger cousin, the Accuoscope seems to make things better – a lot better. We are having a hard time getting access to one.

I love my wife. She’s brilliant, a 4.0 student at Harvard University. Earlier in the week that this occurred, she started filling out her PhD paperwork; we were planning a spring ‘14 graduation with her BA (called an AB there). It’s hard for her to write now without jumbling words and sentences up.

She is getting better.

It’s slow, this progress, with back and forth moments. How can I tell, other major symptoms are leaving, but the memory loss is my most difficult to cope with. I’m lucky, she almost always remembers me. We’ve known each other almost 20 years.

Tomorrow is her birthday, her 42nd. We’ve had a party every year, but this year we’re not. We celebrate birthdays, no matter how old we get. It’s sad this year it will be missed – or postponed at least.

I love writing, but this year I’ve been too busy; busy taking care of her, of others, of everyone. I had all these ideas of what being a priest would mean. This year, I’m too busy being one to do anything else. I had no idea. We both keep saying that: no matter what we thought it would be, we had no idea.

This year I did join a band. I’m the lead singer in a punk band. I’m keeping this up. It’s funny, but that music in particular is the release I need.

Sorry for the lack of writing. Sorry for not going more in-depth. It’s been a crazy year, just like I knew it would. The spirits told me on New Year’s Eve. I sat in a theatre with friends and I just knew these things were going to happen, not exactly these things, but how hard it was going to be. That realization hit me like a live wire; now here I am.

What’s my name? “You’re Urban,” she answers. I am, and this year I’m finding out just who Urban is, who I am becoming.


  1. Urban-

    This is Heather- Saum's friend from MCTC- many years ago. I saw Kate Lynn today and she mentioned Saum's concussion. I'm so sorry to hear about your troubles. I've only just skimmed this blog tonight but I see you've had many adventures since I've seen you last- some much more fun than others. Anyway, I wanted to tell you and Saum that I hope things will continue to get better. It would be nice if the universe would cut you a break and speed this all up. For what it's worth I'm sending you my warmest most healing thoughts.

    For awhile I was care taking for 3 family members with memory issues- brain injury, dementia, and dissociation. It's hard and frustrating for everyone involved. I found a few things that worked good: pictures labeled with both the name and relationship of the person in it (my daughter Heather)- telling stories about our lives where my father was the hero. He often would remember things unexpectedly when we did this and always liked being the hero- and that even after a 'real' outing wasn't possible trips through the drive through at Arby's were still pretty good. He didn't remember at this point what he liked but I did and he still liked it. I'm sure you've got better tricks than these but I tell people these things because I'm always listening for the next thing that will work for us.

    Again, love to you and Saum. I so glad you have each other.

  2. Thanks Heather. It's a crawl, but it's forward progress.

    She's a great woman, I'm lucky to have her.