Tuesday, July 21, 2009
WAITING FROM WITHIN
I lie each day
beneath the thick covers of my bed,
my body slowly descending downward
far beyond the realms of exhaustion
as though I am perpetually dying.
the very center of my being,
the essence of who I am,
remains deeply alive;
familiar, constant and unyielding.
It exists of a strength and vitality
entirely its own
as it waits silently from within
for its wondrous moment
I can only watch as the days pass
outside my bedroom window.
In the distance,
I can hear
a baby crying
and a woman laughing
as birds sing out their songs.
I imagine that their expressions are my own.
They each speak for me
with a voice and a freedom
I do not yet possess.
--LB © 2002
The opening of this poem was inspired by (and slightly borrowed from) the following quote:
“Each day as I would slide into the downward spiral of my symptoms, I would feel as though I were suspended at the edge of death. As if I were perpetually dying.”
Susan Griffin, describing CFS in What Her Body Thought: A Journey into the Shadows
Sunday, July 12, 2009
The article is written by Jody Smith, and is being reposted with her permission. You can find the original on her site at:
If a Tree Falls in a Forest ...
by Jody Smith
If a tree falls in a forest, and no one hears it...
does it make a sound?
To the chronically ill, this is more than just a
We are people living out of the loop and our
connection to the rest of the world can be tenuous.
Some of us have more of a social network and some
of us have less.
Some people with a chronic illness are very much
Most people don't want to hear the long descriptions
of symptoms, the loneliness, the feelings of isolation
and alienation. They don't want to be the sounding
board for the person who feels they've lost any
normal semblance of having a "witness" to their life
The invalid is very self-absorbed. They have to be. It
is a full-time job rebuilding their life and they can't
afford NOT to be very, very focused upon this. And
they will repeat, and repeat and repeat the things
that they need someone to hear.
When the sick one has a revelation, and no one
wants to hear it, they are lessened. Their sense of
self, of their place in this world, becomes
I remember being told by a well-meaning friend a
few years ago, that I should not think that my value
as a person was any less now that I was not able to
But she was wrong.
Should my value be less? Should my life be less
significant than the life of someone who is healthy
and productive, connected to others through
activities, who makes an impact on the world and
other people? No, of course not. But it is less. I
started out believing otherwise but over the last four
years, I have had it pounded home to me.
In a family gathering, the sick kid may be in the
background, on the outskirts. He is the least able to
draw attention to himself, because he is weak and
easily tired. And he has, really, very little to say. He
has no stories about school or work to tell. He has
no achievements to share and be praised for.
His biggest achievement lies in the fact that he
managed to get out of bed and dressed, and now
is curled up in a corner of the couch, while the
people around him share their normal life.
Lucky is the sick person who has a champion in their
corner. And that champion is likely carrying a heavy
load. Because the sick one has a great need to be
heard. To be affirmed and acknowledged. To talk
about their symptoms, their fears and their hopes.
They fear that, like the vampire, they have no
reflection. They do not have an effect on the world
around them. They throw a pebble into the pool and
the ripples are so insubstantial that ... they fear that
they may be disappearing. And that they may
disappear without anyone even noticing.
That's why I'm here. Because I fell, a long time ago,
and I want to be heard.
Can I get a witness?
Please visit Jody's website and blog at:
Wednesday, July 8, 2009
Note: This is an old journal entry I wrote years ago. While it initially starts out by describing some of my experiences with the homeless, it is ultimately about treating people with dignity and humanity, with (I hope) a clear tie-in to ME/CFS at the end.
My sophomore (and first) year at Tufts University, I decided to join the college weekly newspaper as a photographer. During my first day on the job, I was told they were doing a story about the homeless in Boston. They wanted me to go downtown and take some photos of any homeless people I happened to come across. Fabulous, I thought. That sounds like loads of fun. While the assignment was not what I'd anticipated, I hesitantly accepted the challenge.
I took the T to Harvard Square, hoping I’d find someone in the subway or thereabouts curled up in a corner and covered in a blanket, and I could snap a quick photo without notice and be on my way. But there were no homeless to be found in the subway that day.
I climbed the stairs leading to the Square and walked around the shops until I found a man standing on a street corner with a duffle bag, holding a sign that read “Will work for food." I tried to casually snap a quick shot of him, but I realized I couldn't get a close enough photo without him seeing me. I was afraid this might anger him. So (realizing this might not be the best idea either), I decided to simply approach him and ask his permission to take his picture.
I explained to him that I worked for a local college newspaper, and that I would like his okay to take a photograph of him for an article we were doing on the homeless. "Well, that depends,” he immediately responded, "What does the article say about us?" I admitted that I did not know; I had not seen the article and wasn't even sure it had been written yet.
He then went on to tell me a bit of his personal story. I don’t recall all the details now, except that he was an educated man and had once been a professor, and that he’d merely fallen upon hard times. He went on to say that people often think the homeless all have similar stories that led them to where they are; that is, that they're all drunks, or mental cases, or drug addicts, or uneducated and lazy bums who couldn’t make do in the world. But that's not the case. While that stereotype may fit some, even many, every homeless person has their own story just like everyone else. One photo of one homeless man, he told me, could not possibly represent the homeless as a whole.
I admit I was surprised by his words, and by how articulate he was. I am not sure what I’d expected him to say, but I know I had not expected to engage in an intellectual conversation. Perhaps, I realized in that moment, I had been guilty of making such stereotypical judgments about the homeless myself.
In the end, he agreed to let me take the photo, but only if I made sure the article did not paint the homeless in a negative light. I wish I had spoken to him longer, had thanked him for his words of insights, and had not agreed to a promise I couldn’t keep. I don't think I realized at the time, though, how much his words had impacted me.
I thought of that man often after that, and never looked at the homeless in quite the same way again. Many years later, after moving to Arizona, I had another similar experience which also left a lasting impression. I was sitting on a park bench one day, reading a book on medical intuition in an attempt to solve my own struggles at the time (this was after I got sick, but obviously before being bedridden). I looked up from my book for a moment, absorbing a thought, when I saw a very young (and admittedly very scary looking) homeless man approaching me. He was probably just in his early 20s, and I vaguely recall he had piercings and tattoos all over him. I looked back down at my book, in part not wanting to stare, but mostly because he made me a little nervous and I didn't want to draw his attention.
I heard him stop in front of me and ask for change. I looked up at him and smiled, apologizing that I did not have any money on me. Despite the news that I had no cash to give him, his eyes and face brightened at my reply, and he seemed surprised by my friendliness. He asked me what I was reading. Too embarrassed to say it was a book on medical intuition, where people claimed to be able to tell you all that ails you with one simple glance, I quickly responded "Oh, nothing interesting,"
“Well then, why are you reading it?" he asked, and this made me laugh.
He stayed and continued to chat with me, even briefly joining me on the bench. I don't remember what we talked about in that short amount of time, but I do remember he asked me if I lived nearby, and if he could use my bathroom to wash up and perhaps take a shower. I emphatically turned him down.
“’It’s ‘cause I’m a bum, right?”
“No,” I said to him, “it’s because you’re a stranger. I’m not in the habit of letting strangers into my home so that they can have a shower.” He laughed at this and told me that was fair enough.
In the end, when he got up to leave, he looked at me and thanked me for talking to him. I gave him a somewhat absent-minded but friendly “Sure!” and suddenly he looked very serious. "No, really,” he said, “thank you for treating me like a human being."
This caused me to tear up a bit. I was deeply saddened to think this man had been so continuously judged and mistreated that he actually felt the need to thank me for responding to him with basic kindness, and recognizing his humanity. My heart broke for him.
Despite the difficult circumstances I now also find myself in, I am grateful I live in a beautiful home with plenty of food and water and shelter from the rain. I have a wonderful companion (now my fiance) with whom, though long-distant, I feel the greatest of support, love, friendship and encouragement. I also have family and very dear, lifelong friends who care for and love me. But I now understand, at least on some level, what it feels like to be regularly misjudged, and to be seen only for where you are, versus for who you are. People who don't know me are quick to make assumptions, and people who do know me seem to sometimes forget that I am still that same energetic, ambitious, adventurous person inside, with the same dreams and desires.
I would even say that, at times, I actually do feel homeless in a way because I am trapped in a body that no longer feels like a true home to me. It does not match the spirit and energy of my soul.
Several years ago, I had the unfortunate experience of seeing a doctor who, upon hearing I had ME/CFS, immediately responded "I don't do CFS. I don't believe in it, I don't treat it, and I certainly don't do disability forms for it." She then wrote down "major depression" on my chart -- without asking me one single question about my symptoms, my medical history or my beliefs. When I told her I wasn't depressed, she simply replied "I don't believe you." This happened in the first five minutes of entering the room before she even examined me, all merely from my stating I had CFS. It was the first time in my life I had been made to feel less than human, like I was a piece of trash. Much like, I suspect, the homeless feel on a regular basis.
Wherever we are in life, whether it is in a good place or bad, we are not defined by our circumstance. Life can change in an instant, even when you're doing all the right things, and all that you once had, all the things you once thought defined you, can suddenly be gone. And when you find yourself faced with such incredible obstacles, all you can do is give your best and try to face each day with courage, optimism, hope and some grace. But no matter who you are or where you are, each and every one of us has the undeniable right to be treated with kindness, respect, dignity, and above all, humanity.