I have loved the stars too fondly

When I was looking for a piece of artwork for this blog’s header, a line came to mind. I didn’t remember where it came from. It’s a beautiful line, perhaps overused, but no worse for the wear:

I have loved the stars too fondly to be fearful of the night.

It’s a gentle, joyful line about death, and I think about death a lot. More broadly, the night is the dark, liminal zone that grows up around a chronic illness this profound. I wanted to pair the lines with a sun and moon intertwined, an ancient alchemical symbol that symbolizes androgyny, the union of supposed opposites.

I was curious where the lines came from, so I looked them up. They’ve been commonly but wrongly attributed to Galileo, but come from a poem by Sarah Williams called The Old Astronomer. 

I found, strangely, that the poem in its entirety reflected aspects of my situation in greater detail and lucidity than I had expected. The poem is about an old astronomer, who, facing death, instructs his younger pupil to carry on his work resolutely and without need of recognition. The pursuit of science, it’s implied, is transcendent: A Great Work that is carried on by lineages throughout the ages.

The Old Astronomer¹

Reach me down my Tycho Brahe, I would know him when we meet,
When I share my later science, sitting humbly at his feet;
He may know the law of all things, yet be ignorant of how
We are working to completion, working on from then to now.

Pray remember that I leave you all my theory complete,
Lacking only certain data for your adding, as is meet,
And remember men will scorn it, ’tis original and true,
And the obloquy of newness may fall bitterly on you.

But, my pupil, as my pupil you have learned the worth of scorn,
You have laughed with me at pity, we have joyed to be forlorn,
What for us are all distractions of men’s fellowship and smiles;
What for us the Goddess Pleasure with her meretricious smiles!

You may tell that German College that their honor comes too late,
But they must not waste repentance on the grizzly savant’s fate.
Though my soul may set in darkness, it will rise in perfect light;
I have loved the stars too fondly to be fearful of the night.

Sarah Williams

It’s a good piece to reflect on now, when I am feeling extremely ill and in a dark night-within-a-night. In these times we want to shy away from darkness and disease and disorder, and the mind attempts to shut off, to go numb, to deconstruct into anxieties. But the darkness we’re afraid of is not foreign and isn’t without beauty. In the silence beyond the body, there are stars. In the hush and quiet of a life disconnected, there is a silky dark beauty, a contemplative asceticism whose gem, yielded through years of pressure, is the diamond of pure compassion.

And for every one of us who is deeply sick with a medically unsolved disease, our lives matter. They are great sources of data and investigation. We are all scientists, recording our observations in support groups and websites, building bases of knowledge that are later tested by researchers.

Scientists collect our blood and DNA and every data point that we contribute matters. The researchers who are solving this disease have been inspired by all of us. Our suffering and our attempts to understand and quantify it contribute to a Great Work that does not yet exist in completion.

Our task, knowing this, is to collect our meaning, our sense of purpose, from the disease that has seemed to shatter it. And to fight: To fight beyond our capacity, beyond what we thought we could or who we thought we were. To be more, to get more. To contribute to the Great Work, to hope it see it finished, to prepare those after us to see it through.

We matter. We fight. And we will rise.

Further Resources

Visit MEPedia, a crowd-sourced knowledgebase about CFS-ME
Check out The Stanford Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Initiative
Read the wonderful description of CFS-ME from the Open Medicine Foundation

1 The Old Astronomer abridged version appeared in Best Loved Poems of the American People, 1936.

Welcome to my blog

My name is Dylan, and I am a 30-year-old artist, writer and creator. I am living with a chronic illness called CFS-ME, or chronic fatigue syndrome/myalgic encephalomyelitis. My illness is in the lower end of the severe category. This means I am mostly bedbound and almost always housebound.

 

CFS-ME is a poorly-understood illness for a variety of reasons.

• The general public doesn’t understand CFS well, because the name seems to imply a vague, “hypochondriac” illness, or just “being tired.”
• Doctors don’t understand CFS well, because they don’t receive much education on it or other poorly understood or rare diseases. Most of their knowledge is outdated, incomplete, or comes from studies that have been, by now, at least partially discredited.
• Research scientists don’t yet understand CFS because we are still developing the tools to precisely understand what goes wrong inside the cells of people with CFS.
• People with CFS understand the CFS experience and symptoms, but we are often mystified by changes in our condition and the seemingly capricious nature of the illness. Some people have gotten very sick or died, and some people have spontaneously recovered; we don’t know exactly why. We are often at a loss to figure out how to help ourselves.

What is important to know about CFS-ME?

Given all of the confusion, what should the general public know about CFS-ME? If you know someone with CFS, what are the basic facts that you should be aware of?

• Chronic Fatigue Syndrome was once thought to be psychological because we did not yet understand it.
• Since at least 2015, we have had compelling physical evidence for the existence of CFS-ME as a distinct biological disorder.
• Scientists are still learning about CFS. Currently it is very difficult to get a CFS diagnosis and it takes many patients many years.
• CFS causes profound fatigue and pain that is not relieved by sleep.
• CFS has a “hallmark” symptom called Post-Exertional Malaise (PEM) which occurs after overexertion of any kind and results in a dramatic loss of functioning.
• CFS is usually very disabling, but level of disability varies between individuals. Severe CFS is comparable to the level of disability produced by late-stage AIDS.
• CFS typically limits earning potential and may make gainful employment impossible, and it is difficult to get SSI/SSDI.
• Many popular internet resources dealing with CFS contain inaccurate, outdated information and potentially harmful advice.
• CFS is under-researched and underfunded.

To learn more about each of these issues, see “What is important to know about CFS/ME?” in my About section.

My experience with CFS-ME

Pre-illness, 2006. Totally washing dishes instead of paying rent.

I was a full-time college student when my illness began, and I had a great on-campus job as a research assistant for my professor. However, I became more and more tired over time and found it hard to walk between my classes and my car. One day I was at the far end of the quad at University of Maine at Orono, where I was studying environmental ethics, and I realized I could not walk back to my car in the parking lot. My legs just didn’t work.

It was a beautiful day that day, but I felt disconnected from everything. I sat down in terror on a big rock between the quad and the dining hall and just freaked out internally. I didn’t know what to say to anyone or how to get help. I didn’t feel dizzy or sick. I simply didn’t have the energy to move. I stayed for as long as I could, watching the shadows lengthen. Finally, I somehow got up the strength to get up and slowly and haltingly walk half a mile to my car.

It was soon necessary for me to leave college due to my fatigue, and by the time I dropped out, it was a huge relief to do so. I had been spending all my off hours in bed trying to recover from my days on campus.

I currently live at home with my mother and stepfather on a beautiful rural lake in Maine. I have a few local friends but often only see people- usually my family members- for a few minutes each day, and I spend most of my time in bed with my laptop and my cat Dvon. CFS is often tremendously isolating.

My goal: End CFS and find a cure for me and others

My goal is to raise awareness, generate understanding, and support the search for a cure for all people with CFS-ME and similar diseases.

In my post I have loved the stars too fondly, you can see clearly why every patient with CFS is so important to finding out what causes CFS and how to cure it. In the absence of adequate information on our disease, we have become scientists, each with a study group of one. We also share and discuss recent CFS research, educate doctors, encourage positive and incisive CFS journalism, and support the push to discredit deeply harmful and flawed studies which are harming us every day.

Are you ready to help us?

 

Further Resources

Visit MEPedia, a crowd-sourced knowledgebase about CFS-ME
Check out The Stanford Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Initiative
Read the wonderful description of CFS-ME from the Open Medicine Foundation