I am an “undercover disabled woman.”I don’t look disabled.Or at least, disabled in the way I had always thought disabled people look.Disabled like my grandma — a woman who, on a good day, could slowly get around with her cane, and on most days, was reliant on her wheelchair.A woman who didn’t drive, whose body was ravaged from the effects of rheumatoid arthritis, strokes, and breast cancer.
I’m not that bad.
But one of the things I’ve learned in the seven-and-a-half years I’ve been living with an autoimmune disease, is that there is no black-or-white definition for any of it.No clear-cut way a disabled person looks or acts.No concrete way in which to explain an autoimmune disease.
So I write about mine, in the hopes that it will reach someone who needs to read it.Someone who is also dealing with medical issues, or who knows someone who is.
Which brings me to one of my personal essays that was recently published on The Mighty. You can click here to read “Why I Can’t ‘Wear My Scar’ With Pride.”
When I was a girl, I kept a large plastic container under my twin-sized bed.This container was my “travel box.”
I’d read the Travel Section of the Sunday Los Angeles Times and find 800 phone numbers to call and request free brochures (these were the pre-internet days).I’d cut out articles and pictures from the paper.And once the brochures arrived in the mail, I stored them in my travel box.
I’m turning 42 this year, and most of the places that were in my travel box remain on my “someday” list.Someday I’ll visit my pen pal in Japan.Someday I’ll eat gelato in Italy and ride a real gondola in Venice (even though the one in Naples, Long Beach was quite charming).
For now, my family and I take our yearly California trips.We try to do two a year (though last year we had to cancel one of our trips due to my health).
And, on a regular basis, I write about different neighborhoods and cities all around Los Angeles.It allows me to be a bit of a virtual explorer, and hopefully my writing is inspiring others to take a day trip or explore a new area of town.
One of the reasons I appreciate living in Los Angeles is the sheer number of experiences I can provide my son.We are a museum-going family and visit several of our favorites on a regular basis.
Last week, we saw the only external tank on the planet, and then a few days later, we saw the fossils for the state dinosaur, the Augustynolophus.
Unfortunately, I think locals sometimes forget to take advantage of all their city has to offer.So here’s a suggestion for the new year — play tourist.Visit the California Science Center or the Natural History Museum.(We were at both last week).Check out the Petersen Automative Museum or the GRAMMY Museum.(We were there fairly recently).And, if you’re still unsure about where to go, check out some of the guides I’ve written for MomsLA.com. You’ll find guides to the L.A. Zoo, the Los Angeles County Museum of Art, and more.
A new year is upon us, but I no longer make new year’s resolutions.Because, like I told my son, I believe people can make a change, a fresh start, at any time.
And, like I saw from last year, there really is too much I don’t have any control of.Last year, I got sick within the first couple weeks of the new year — a mystery illness that was just the beginning of a very health-challenging year.
So this year, I’m trying to stay flexible, or as my son likes to say, “go with the flow.”Because, really, no one knows from one day to the next.
In lieu of a resolution, I am designating a focus for the year.That focus is my writing — the personal writing I do here on this blog, as well as the personal writing I send out into the world.(I’m very proud that one of my personal essays will be included in an anthology titled Chronic Illness Truths that will be published later this year).
Barbara Abercrombie, an author and fantastic instructor in the UCLA Extension Writing Program explains it well:
“… we all go through strange and painful periods in our lives and one of the reasons we read is to find out how other people, real or fictional, navigate the hard times.” (This quote is taken from Barbara’s book A Year of Writing Dangerously).
That is one of the reasons I read.And why I write.