Vegas and everything after

Rob was traveling for work this week. He had to go to Vegas for the annual Consumer Electronics Show, which he has been attending every year since at least 2008. That was the year after I started my first blog, and I wrote the following:

Thursday, January 10, 2008

Rob got back last night at 2am from a trip to Las Vegas where he spent several days communing with tech geeks from around the world at the Consumer Electronics Show. So he started his official birthday morning in an unconscious heap of jet lag, accompanied by Smokey, who does not sleep well when Rob is gone and can finally, finally rest. Which means that tonight maybe I can finally, finally rest.

For his birthday dinner Rob has requested pizza and cake. Yes, that’s right, he’s turning nine.

So for practically a decade, each new year has started out for us with CES and Rob’s birthday. I can see how much has changed just by reading that short post I wrote eight years ago. Rob would leave town for work frequently, and it hardly broke my stride at all. Aside, that is, from dealing with two annoying cats. And given the difficulties we face now, cats don’t seem particularly challenging.

I was 29 when I wrote that post. Read More>

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Saving Face

I’m having a hate–hate relationship with my Trilogy, which is the BiPAP machine I use to breathe at night. Except, do I actually use it to breathe at night? The fact that I’m unclear about this is the biggest part of the problem.

Back in June, I was in the ER and then the ICU for a case of pneumonia. I had already been told that my breathing levels were on the decline, and the illness didn’t help. I left the hospital with both a cough assist and the Trilogy, and I was told to use the latter every night.

Friends with ALS told me to try the nasal pillow mask, because it was the smallest and most manageable. Little plastic “pillows” fit into your nose and a single strap wraps around your head. Air blows directly into your nostrils all night. But it didn’t work for me, at least not at first, because my mouth kept popping open, shifting the air around and waking me up. So I opted for a full face mask, not unlike an imprisoned serial killer who eats his victims. That’s right, I said his. It was not a good look for me. Read More>

|Categories: Doctors, Life, Vanity | Tags: , , | Permalink

Real Life

It is almost 2016, a year I couldn’t have imagined when I was a child. The idea of it, sure. I probably expected to be married with children, to have a job. But I had no concept of what that really meant.

Now I have a husband—not someone I sketched loosely in my head, but an actual person with his own thoughts and odors and television habits. I have a little girl who cracks up at knock knock jokes, and who says words that I swear I didn’t teach her. My sister is expecting her second baby—a real-life baby, not just a doll that we named and held and then left under the bed.

My life, it seems, has taken on a life of its own.

As a kid, I didn’t anticipate settling in California, a place that was once only familiar to me via The Babysitters Club books, with all their talk of granola and tofu and sprouts and Knott’s Berry Farm. A place that remained well beyond my reach until I crossed the state line in a U-Haul more than 15 years ago.

And I could no more have pictured a life with ALS then I could an alien abduction or the actual experience of childbirth. It wasn’t that I lacked creativity, but who at a young age could have colored in the life that would eventually be theirs? More to the point, what would we do if we had known? Read More>

|Categories: Life | Tags: , , , | Permalink