The Slow Life

Most of yesterday was cloudy, which is nice in the summer when the sun can be so hot.  It stayed in the low 80s, so it was nice.

I felt sluggish.  I have for the past month, had that feeling of moving through syrup that people with chronic fatigue are familiar with.  Even though I have had neurological problems for 40 years now, I still get frustrated by these bouts of fatigue.  I am able, mostly, to keep up with my social obligations — in fact, I find often it helps to be around other people.  I kind of leech off their energy.  Although sometimes I can’t answer questions coherently, and forget things, I still like to be with other people.

Then I nap.  I don’t get much artwork done.

I have had a morning writing practice for about 5 years  now, but this last month I just stopped.  I slept.  I told myself it didn’t matter whether I wrote or not — and I have all these piles of composition books filled with nothing much.

Yes, that’s a sign of depression.

I’m being treated for it, but fatigue and depression, they are part of my life, no matter what I do.

My son’s been helpful.  He paints with me sometimes, gets me out of my lethargy bubble.  He’s in his thirties and energetic.  But after we painted for about 2 hours, he said he was tired and took a nap on the couch.

I was delighted.  If he needs a nap after painting, then maybe I’m not so abnormal after all.  It is intense work, even if it’s nourishing work.  I took a nap, too.

So this morning I did my morning write:  I wake up, make a cup of coffee, get back in bed, prop up the pillows and write in a notebook for as long as I need — usually about 30 minutes.  Most of it is just recounting yesterday, or working out a problem.  Sometimes a real story or poem will flow out and I’m there to catch it.

The day starts with words.  It helps my memory.  It’s a space that’s all mine.

And now, here I am writing a blog post again.  One creative act leads to another.

Late yesterday afternoon, the clouds got a darker shade of gray, thunder rumble like long monstrous growls.  A light rain sprinkled down, then a heavy rain drenched the ground.  As the sun set, it lightened up, and for a while it rained while the sun shone.

The light changed as the sun sank lower on the horizon, and glowed a golden pink.  A magical kind of light that made my little bit of the world like another planet, with soft light and sweet damp air.

I am so lucky, so very lucky, to have a life that’s slow enough that I can see such moments, savor them from beginning to end, to watch the sky fade from the magic of daylight to the rich dark blue of night.

Yesterday, I accomplished nothing.  And I accomplished everything.

30 snail


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Songs that Rise Above it All

I got word from Dean Brantley Taylor  that he’s got a new song out on the Chronic Fatigue Songs site. This is a site for songs he wrote and produced specifically for CFS/FM/Lyme suffers and chronically ill people in general.  The rest of ya’ll can enjoy them, too, because life is difficult and sometimes a good song about difficulties lightens the weight of it all.  The new song is called “Take Off.”

I’ve enjoyed Taylor’s music for a few years now and am happy to pass on this link to the new song.  He wrote it with Morgen La Civita, whose strong voice gives no hint that she suffers from Fibromyalgia.  She says,  “While I was only diagnosed with Fibromyalgia in the summer of 2011, like most people with chronic pain conditions, I suspect I’ve had it for much longer than that. I got the usual “You’re just a worrier” or “You just need more sleep” to the ever popular, yet unhelpful “Are you sure this isn’t all in your mind?”  I grew up with a mother that suffered from chronic conditions like CFS and Fibromyalgia and as a mother myself, I now see all the challenges that she had to cope with. People like us live for those rare and all too brief, pain free moments. And for me, music makes the time in between go by a little faster.” (Morgen La Civita)

The song represents the dream of Morgen and Dean to… untie the ropes of this illness so we can all “Take Off”  I think it speaks to a universal  yearning to be freed from the things that bind us in life.

There are now 10 songs on the Chronic Fatigue Songs site. 

I thought this was a great opportunity not only to share the new song, but re-post two earlier reviews of Taylor’s music that were posted on my old blog Chronically Inspired, and a guest blog he wrote himself.   

I am not a music reviewer, but I know what I like, and I always enjoy these songs. I’m also deeply grateful that we have the technology to share our music without having to be financed by music corporations.  If these songs move you, consider buying them and supporting the people who are so generously bringing music to us.  Enjoy the song and read on.

From January 2011:

Here’s a new video called “800 Yards Around,” written by Dean Brantley Taylor and performed by Bill Guance.  Taylor is going to write a guest post for Chronically Inspired next month on remaining creative and capturing the life that is given.  I find this song amusing and sad; there’s a little love and a bit of zen acceptance.  There’s a great epilogue where Taylor talks about the simple grace of his 5% capacity.
Enjoy! (I recognize several of the medication bottles that are featured.)

From February 2011

Dean Taylor writes songs about life — his life happens to include chronic illness and fatigue.  That’s the material he uses for his soulful songs. I asked him to do a guest blog and share some of his creative process.  I love that he works on scrap paper — my whole creative life is on post-it notes and notebooks scattered around the house.  His song 800 yards around is a wonderful song of how we have to live within our limits, but within them, there is time for music.  We all need songs like these.   There should be more songs about our struggles with illness — perhaps with song writers like Dean around, there will be. ~Joy

Hi. It is an honor to write this guest blog. My name is Dean Brantley Taylor. I am a songwriter who has had Chronic Fatigue Syndrome (CFS-ME-Lyme) since 1993. By 1999, I became too fatigued to work. I had to quit most everything and severely limit everything else: walking, standing, talking, typing, reading, watching TV … everything.

I even tried to stop listening to music because listening makes my symptoms worse. Apparently, my subconscious mind didn’t like this, because it started creating music in my head, and I became a songwriter. It’s funny but CFS created something that actually helps me deal with my CFS. Here are a few ways that songwriting helps:

1.      Gets the emotions out. A lot of my songwriting is influenced by my CFS experiences. The words, the melodies and singing the songs in my head all help me to express the emotions, the frustration, the confinement, etc. Some of the songs I sing in my head are streaming here: . “Fragile,” “Faith” and “800 Yards Around” are good examples of songs that get my emotions out. “800 Yards Around” is particularly cathartic for me. I’ve sung it thousands of times in my head. It’s strangely fun to sing. I even did a video for it .. .

2.      Makes me feel productive, passes the time. I have to sit alone, quiet, doing nothing for hours every day. As you know, that can get very boring and very hard to do. Writing songs in my head helps me pass the time and makes me feel productive. Over the years I have scribbled down lyric ideas on lots of scrap paper .. lol. I’ve got a lot of melodies in my head.
3.      It’s a work substitute. By taking baby step after baby step over the past decade, I’ve been able to put together a pretty nice song catalog and have established internet working relationships with co-writers, as well as producers, vocalists and musicians. Working on songs gives me the teamwork feeling that I used to get from my job or playing sports. We all have a common goal and work toward it, supporting each other and sharing in the successes, failures, fun and frustration along the way. Our songs are even starting to make it onto CDs and into films and TV shows. Here are some songs I co-wrote with Marc Blackwell; we put together a CD .. It’s even on iTunes and Amazon. I think that’s pretty cool! Most of my other co-writes stream here: .

4.      Meeting friends. Since I got CFS, I haven’t made many new friends in person. It’s too tiring to go outside my apartment or talk (in person or on the phone). But over the years, I’ve made quite a few good friends on the internet by working on songs with them.
Well, that’s all for now. Thanks for letting me blog at you.
Dean Brantley Taylor

From December 2011- Holiday Help

I got an email a few days ago from Dean Brantley Taylor, a songwriter with Chronic Fatigue Syndrome, Myalgic Encephelomyelitis, Fibromyalgia, Lyme, Multiple Chemical Sensitivity and Gulf War Syndrome, with a link to a new video of his song Fragile, performed by Lee Johnson.  It’s a tender, mournful song and a nice respite from the overly bright manic music of the season.

The holidays are the time when it’s easiest to fall into depression and to over-extend ourselves.  Perfectly healthy people are vulnerable, but those of us with chronic health problems, pain and fatigue are even more susceptible.

Even though we can be sane and thoughtful and careful all year long, this is the time when it really hurts not to be able to keep up with our healthier family members and friends.  So today is a good day to sit back, rest and listen to a song that honors fragility.  Think of how carefully you might treat a family heirloom ornament, or a delicate paperwhite narcissus.  Appreciate your own fragile beauty.  You are a gift to the world — your insights, your survival, your very being are all gifts to the world.  Take good care of yourself this season.

Lee Johnson