It’s the first of the month, so there’s a new Hot Flash on the Hot Flashes page.
I’m still not clicking much on Facebook, but I have another one-stop pleasure trip this week.
If you haven’t read Elisabeth Tova Bailey’s THE SOUND OF A WILD SNAIL EATING, I highly recommend that you do. I may read it again, actually.
It’s an absorbing and enchanting book that began when the author was bedridden with a dangerous virus. Somehow, a woodland snail got into her bedroom, living at first in a pot of flowers and then in a terrarium.
The site linked to above has a video in the sidebar, a slideshow narrated by the author, sound recordings of the snail and of the author each eating a carrot (probably different carrots, though not necessarily). There’s information on snails, on patient support groups (including for Chronic Fatigue Syndrome), and on — oh, so many things!
Plus, you can buy the book or read excerpts or listen to part of the audiobook!
For another snail-watching experience, check out this poem with photos on Alice’s Grand Adventures. Nice.
A WRITING PROMPT FOR YOU: Make your character bedridden for an extended period of time.
Alicia Butcher EhrhardtJuly 1, 2016 at 4:57pm
I have bought an read it, and admired her determination and careful observation.
The book definitely lacks something, though – a conclusion.
I haven’t had the time to look up what happened to her, and there is no epilogue or website to go to easily (and I’m either lazy or busy, depending on your take).
Interestingly enough, this is the ONLY kind of book – evidence of the ability to work according to SS – which a disabled person is allowed to publish without losing benefits. One which is put together out of journal entries and such, or published by friends.
SS Disability cannot handle artists in general – their guidelines for painters are ludicrous: ‘If he could paint four paintings a month before, and only two now…” and completely miss how disability afflicts creative people who live by their art – as opposed to business types and employees who are paid by the hour the same rate – and I tried for years to get through to them (fortunately getting to retirement age before I actually published).
The rules need to be different. Artistic income is incredibly erratic, especially for the young, and disability compounds this enormously. So I can’t even encourage newbies who are disabled to write and publish, because if they start to make a bit of money (you know how stable a writer’s income is from the books they’ve published until the present), it could push them out of the Medicare or Medicaid they need to LIVE on without being able to sustain them.
Marian AllenJuly 1, 2016 at 5:33pm
If you follow the link in my post, it takes you to her web site. I must say, I felt the book did have a conclusion, or at least a sense of closure. But I often find I’ve had a different reading experience from friends who’ve read the same book. 🙂
It’s tremendously difficult to qualify for disability, I hear from friends and relatives who’ve applied, and the more in need of it one is, the more difficult it is to navigate through the obstacle course. And it seems that helpful programs are structured to keep recipients from getting ahead of the most abject poverty. IMO, the programs should support recipients in reaching solid ground, not just keep their heads ever-so-barely above water.
Alicia Butcher EhrhardtJuly 1, 2016 at 6:20pm
I expected the link to lead to Amazon, so I didn’t bother, as I already had the book.
I had been to her site before.
The website is not a very active one, and gives you no sense (she doesn’t blog, for example) of where she is now, whether she got a little better, a lot better, or better.
She doesn’t appear to be a working writer.
It is difficult to qualify for disability, but I did. They retest you every couple of years, keep trying to get you back to work. They do have the reputation of turning down all initial applications, and having a very high proportion of folks never apply again after that denial, and of having a large proportion of those be due to the death of the applicant, whose family should have been entitled to what they should have received – but it is difficult to get a denial overturned if the person has died.
Going from research physicist to someone who couldn’t focus for an hour is actually difficult to ‘prove.’ And the SS doctors who do the denying are often NOT specialists who would understand the illnesses they are turning people down for. Some of them made no sense.
I had private disability as well through my employer. They were required to pay on their criteria – and the university kept the pressure on them. I kept being required to reapply for SS, and got it on the third try, with my own attorney. And then the private disability company stopped paying the exact amount SS was paying.
But I was afraid that if SS kept turning me down, the private company would use that as an excuse to do the same, so it was very nerve-wracking. All this in addition to losing my dream job, the one I went to school forever to qualify for.
It was not fun, and SS initially was very biased against the ‘invisible illnesses’ such as FM and CFS, until Congress told them to cut that out.
When you are ill, and your husband is working, you still have to do your paperwork – the pressures are huge. I’m sure that’s why many people who should qualify just give up.
It helps if you are a ‘highly productive’ individual before – and they still turned me down twice – I don’t know how people who are hourly employees can prove that they can’t do their job any more, or any other they’re qualified for.
There is STILL a lot of fraud – and they keep finding insiders participating in the fraud. Which takes money away from people who should have it legitimately. I don’t know what the proportions are.