Tag Archives: disability

Heightened awareness

I’ve been thinking lately about the concept of awareness. This is a word that anyone with a chronic or serious illness ends up hearing or using a lot. There are days or weeks, charity events, websites, blogs, and forums dedicated to raising awareness of this illness or that. Often in these cases “awareness” includes money to be spent on research or treatment, but my thoughts about this term go beyond the financial. Three particular instances have given me a lot to mull over.

parkingSeptember 14-20 was “National Invisible Chronic Illness Awareness Week.” (How are people with chronic fatigue meant to read to the end of that title without falling asleep?) When I first heard of this, I thought how wonderful, a week dedicated to the problems faced by people with invisible illnesses, something one of my favorite forums, But You Don’t Look Sick, is also all about. I read some excellent — and secular — articles on the site pertaining exactly to my experiences, such as this one about parking in disabled spots when you’re not obviously a gimp. (I use a cane now, but I still find myself affecting a limp I don’t have when I leave or approach my space.)

But look more closely at the site and you will see a few mentions of Christian resources. It turns out the week was created by the founder of Rest Ministries, which identifies itself as “a Christian organization that serves the chronically ill through a variety of programs and resources.” Now don’t misunderstand: I have no problem with the existence or mission of Rest Ministries. I appreciate anyone, religious or otherwise, who feels moved to help those who need it. But being both Jewish and atheist, I feel doubly disenfranchised by this site. I couldn’t bring myself to participate in Invisible Illness Week, and possibly they lost other non-Christian or non-theist people who were similarly turned off. I don’t like that the Christian connection is not made clear, but rather insinuated in various points on the site, nor is there any balancing message of inclusion towards non-Christians. My several inquiries as to this situation received no response.

“It doesn’t really matter because they’re spreading good information,” I’ve been told. It’s true that they are, and to some extent I agree that it doesn’t matter. But awareness campaigns that do not explicitly include the wide range of people whose lives are touched by illness do a disservice to those they could be helping, including shooing away people like me who would otherwise be moved to help with the campaign.

More: Are we helping or harming?

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Dream operator

by Linnzy

by Linnzy

When I finally had to quit my job, almost one year ago, I saw my plans and dreams collapse. This wasn’t just a 9-to-5 to pay the bills; this was a vocation. I loved teaching and especially in a situation that had been tailor-made for me. I envisioned writing my master’s thesis and looking into getting it published, and eventually receiving a doctorate in deaf education or applied linguistics, and becoming a tenured university professor.

Back when I was healthy, focusing on these dreams was a positive and useful activity. I was always brainstorming ways to teach better, write better, carve out my niche in academia. However, since becoming nerfed, focusing on these same dreams brings feelings of grief and loss, rather than excitement and the urge to plan. I begin obsessing over what could have been, which is a fairly sizable waste of time.

But it’s a mistake to give up on dreaming about our futures in a positive way. No, I’m not making any plans that are contingent on a miracle cure or my CFS going into remission. I’m changing my focus to dreams for my future that are meaningful, realistic, and achievable. And it’s a struggle, for sure. How much easier it would be to simply curl up in bed and forget about the extra effort – and associated pain and illness – it will take to craft a life for myself out of the scraps I have left.

However, that just isn’t who I am. I’m not capable of giving up on my life yet, and I’m lucky to be functional enough to make that stand. My newly nerfed life still needs to be fulfilling. (This blog is a small part of that.) So I was interested to receive a review copy of Jonathan Mead’s e-book, Reclaim Your Dreams. I was curious whether a motivational text might apply to the nerfed, as well as to the able-bodied in a rut.

Thoughts on the book, and the future

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Oy vey, this is a long post

Becoming disabled by chronic illness turned me into an atheist.

Maybe not in the way you might expect. There was no epiphany of God having forsaken me, as I was never close enough with a formal version of God to feel forsaken by him. And I haven’t even read anything by Dawkins yet. I was raised by two Brooklynites whose Judaism was found in their heritage, not in their religious practice, and only my mother was active in my religious education, because her father wanted it. This consisted of Sunday school where I learned a smattering of Hebrew and a lot about the many—many—Jewish holidays, and the observation of a few of those holidays at home. The focus was either on food, presents, or loved ones who had died, not Yahweh. I worshiped at my grandmother’s table groaning with blintzes and matzoh ball soup, not at shul.

In college I spent more time with Grandma, listening more closely to her oft-repeated stories of our family. I also developed a broader historical and literary interest in Judaism after taking a course in Holocaust literature from writer and survivor Aharon Appelfeld. Nothing I learned, however, brought me closer to God or clarified my personal belief system.

The architect of Congregation Beth Shalom replaced traditional Magen David images with a big bowl of chicken soup.

Congregation Beth Shalom replaces traditional Star of David imagery with a nice bowl of Jewish penicillin.

When I lived in San Francisco, a dozen years ago, I made a weak stab at trying to find a synagogue to attend. It had to do with loneliness more than anything else, feeling isolated from my East Coast family and seeking a connection with other Jews. When I moved to Los Angeles, I found an unconventionally interesting temple, and began telling myself that I should chat with the (female) rabbi concerning how to become a member of a Jewish congregation, or even just check out services some Friday. The place was even within walking distance, which for an East Coast girl in L.A. should have been the shofar call that drew me to temple. And yet I never went.

A few years later, around the same time I was reading a lot of books by Stephen Jay Gould and other science writing, I read Why People Believe Weird Things by Michael Shermer and there I found my epiphany: when it came to belief systems, “skeptic” fit me just as well as “Jewish.” I joined the Skeptic Society and began reading and learning more about the subject. What finally tipped the scales for me was the increasing severity of my CFS and the likelihood that I would have to stop working. While struggling with secondary depression and casting about for something to hang onto as pieces of my life were slowly chipping away, I started thinking again about going to talk to the rabbi of that temple. And, again, I never did. But this time, I began considering why I believed I was interested in doing this, but never took action. When I decided I wanted to talk to a disability therapist, a few months later I was in therapy. Why hadn’t I gotten around to this yet?

That’s how I finally understood one day that I had been atheist for longer than I even remember. I didn’t choose atheism nor did anyone persuade me into it; I just realized that I did not believe in God. And then I found I was no longer struggling to reconcile my beliefs, my vague spirituality with my firm views on skepticism and science. Many people who “find God” say that when it happened, the world suddenly made sense to them. I had the same experience when I finally let go of my last vestiges of faith.

Atheist but still a Jew. Feel free to pray for me. (Part 2)

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