Severe ME/CFS Awareness Day

August 8th is the awareness day for severe ME/CFS. At its worst, ME/CFS can mean being so sick and so sensitive to stimulation that you are in a dark room by yourself all day.

There is some good news, though. My sister Isabella sent me a link about progress that is being made on ME/CFS research at Stanford University. It may enable a diagnostic test, the lack of which has been a big obstacle to doctors in identifying patients with ME/CFS and giving them the care they need. It may even point the way toward new treatment! The basic gist of the news is that ME/CFS patients have a much greater amount of certain cytokines that are linked to causing inflammation than the healthy control subjects do.

As always, I am excited when ME/CFS is given publicity and researchers move forward. I’ll be keeping my eye Stanford’s ME/CFS site.

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ME/CFS TED Talk

This is the first ever TED talk about Myalgic Encephalomyalitis/Chronic Fatigue Syndrome. I cried when I watched it. What Jennifer Brea has to say about her experience is so important. We need people to pay attention to us, and to believe us. Doctors don’t treat or study what they dismiss. If you have ME/CFS, please send a link to this video to anyone you know who is interested in understanding you and your illness.

Here are the things I want:

  1. For doctors and scientists to recognize this disease. To acknowledge that it is real and provide palliative care even if they can’t do anything else.
  2. For governments and research organizations to allocate funding for research, which we so desperately need.
  3. For ordinary people to hear “ME/CFS” and understand that someone who has it is very sick. I don’t need them to know what it stands for, or what the symptoms are. All I want them to know is that it is real and it is serious. That seems like a very low bar to me.

Ode to a Baked Potato, on First Coming Out of the Oven

Your salted skin,

Thin, crisply brown,

Conceals within

A wealth of starch,

And butter is

Your golden crown.

 

Though lowly born,

O child of earth,

Your value is

A ransom’s worth

To one who knows

A famine’s dearth.

 

The light of sun

You do not know,

But heated by

An oven’s glow,

You bring us warmth

From lands below.

Goodbye, 2016

I had many goals for 2016, and I achieved a pleasing number of them, but my most resounding success may have been my reading goal: I set out to read 100 books I had never read before during the course of this year, and as of today I have read 102.

I read novels, biographies, plays, poetry, and comics. I read fantasies, mysteries, romances, histories, and a few children’s books. I read ancient classics and books published last year. Some of my favorites were Ivanhoe (knights!) by Sir Walter Scott, and Tooth and Claw (dragons!), by Jo Walton. I read books in every format: paperback, hardback, on my Kindle, on my phone. I listened to many audiobooks, some read by volunteers and others by professionals.

2016 was a good year for me in some ways, but I’m not sorry to move forward into 2017, where many more good reads await me, I’m sure. Happy New Year, everyone!

Happ(iness) Halloween

It is late October, almost time to set out a jack-o’-lantern and welcome Spiderman and Queen Elsa to help themselves to one’s candy. The leaves on the maple tree which shades our western window have all fallen*, or more likely, been forcibly parted from it by the wind.

The sky is overcast, but it doesn’t feel gloomy to me. For some reason, I am almost happy this morning, easily able to feel the good in the season and in the world. Forgive the possible descent into pomposity, but I’ve been thinking about happiness (there, I warned you. Proceed at your own risk). Happiness is often spoken of as if it existed outside ourselves, and most of us just can’t remember where we set it down last; perhaps we left it in the car? But when we go to check, it isn’t there.

But perhaps instead of thinking of happiness as being lost, or even found, we should think of it as being made. This idea is both frightening and exhilarating. Frightening, because that implies it’s something we have to do for ourselves, possibly involving hard work and even pain. And for some of us, there is a deep, abiding fear that there is not, cannot be, happiness inside, so it must be outside, if it exists at all.

The exhilaration comes from feeling happiness to be within the scope of our efforts, no longer to be denied us becauseĀ  of our life’s circumstances or our personalities. When one stops thinking of emotion as being contingent on external circumstances, a new world opens up–not an endlessly blissful landscape, but still one which we have a part in shaping, in whatever way we decide. I’m far from being a Stoic, but I do like this quote from Marcus Aurelius**:

If you are pained by external things, it is not they that disturb you, but your own judgment of them. And it is in your power to wipe out that judgment now.

I feel there is much truth in this. So I encourage you to make your own happiness. You can do it.

* Hence the seasonal name, fall. This has fallen out of use in British English, but remains current, alongside the more formal “autumn”, in American English.
** A Roman emperor who wrote a whole book on Stoicism.