All posts by Curator

Justice

I marched myself down to the sea
And waded in up to my knee
Then went deeper–up to my chest
Until a shark became quite a pest
It ate my head, my foot, my knee
Ha! That damn shark came down with M.E.
 

Reproduced with permission from CATHARSIS, volume 21, February 1995.

Four Short Poems

Wandering, wandering
dazed for days
stumbling on a vague clearing
brings rapture

Seasons

It comes the chage time of seasons
the numbered days of in between
when soul and earth together
labor to quit old joys for new.

Post Eclipse

My soul is pressed between the sun and moon again
and the sun’s rays in it’s rising
shatter my vision to myriad refractions
revealing the me I’ve known and loved
as the me I am no more.
Lovingly, a last time,
I touch those crystal streams of being
and enter quietly the world of pain
to rise again.

Depression

Purified in the flickering furnace
My soul runs molten, liquid
Yet quickly, suddenly slips
Through my hands
Onto the floor.

We Have Been There Before

Sometimes when I needed to step out of my world, to think, to try to find another perspective on a problem, I’d go to a small tavern not far from my home. The place is called the Warren Tavern. It’s in one of the oldest parts of Boston, surrounded by a couple hundred year old brick buildings, gas street lamps and cobble stone streets.

When one steps through the tavern door, it’s like stepping across the threshold of a time machine. The darkness of the small rooms is anything but cold — it’s nurturing. The low rough beams of the ceiling seem all too close to the heavily warn wide floor boards. The small proportions aren’t confining though — it feels more like a protecting benevolent arm wrapped around you, guiding you to another time. But the history of the Warren Tavern, the conversations that took place in there over its small tables and mugs of ale were anything but safe.

This place was far more than John Warren’s Tavern — it was a meeting place of the fathers of the revolution. It was a place frequently visited by Paul Revere, not for the price of the ale, but for the volatile, sometimes audacious spirit of the conversations. It was within the tavern’s walls that the liberty tree blossomed, where our forefathers thrashed out the opinions of many, and charted the course of what must have seemed an impossible enterprise. They too must have faced the challenges of discord, but it was part of their growth — a pruning of the liberty tree to promote new growth. They too must have had to get beyond the heat of conversations and turn talk into action, the action that lead to the lighting of a lantern in old North Church and the ride of Paul Revere.

Here we are now, in a tavern without walls; brought together as our forefathers were, by some common goals, some different goals, and by robust passions that have their way of sometimes triggering angry words better left unspoken. We too must again and again get beyond the heat of the moment. We too must galvanize our common thoughts and goals and distill the conversations into actions. We too have the ability to set off many shots that could be heard around the world, but only if we move beyond focusing on differences, the wrongs of the past, and if we find ways to bring patients with CFS/CFIDS/M.E. (PWCs), the medical community, and the government together to set off shots heard round the world. And instead of those shots being deadly bullets, they can be a better understanding of CFS/CFIDS/M.E., better treatments, and better lives. 

This document may be shared in entirety
by any CFS/CFIDS/M.E. organizations, discussion groups,
bulletin boards, and PWCs.

And I hope our friends in England who struggle
with all the same challenges, don’t take offense
at my metaphorical comparison with the revolution.
For in this battle there is no ocean between us
and we seek representation of all.

Broken Hearted

Broken hearted…
how many times?
Broken hearted…
how many ways?
Broken hearted…
how many days
and weeks and months
and years must I be
so broken hearted?
How can I live
with all of my life
just falling apart?
I ask you–
how can my heart
endure all the pain;
put up with the reign
of terror
illness
brings?

I struggle and strive.
Do you know that I’ve
worked hard to survive!

Yet all, dear old friend,
in the end, I derive
is your scorn and abuse
since I’m of no use
to you
any more.

I’m sore.
And I’m sick.
And I’m scared.
And I’m scarred.

And I look at the loss
of my life-work—my doing,
the meaning,
My Meaning,
cascading,
like lightning,
like drizzle here,
down all around me,
just falling, careening
crash, down ’round my feet.
In defeat,
here I stand by myself.

Far long gone
all the victories
that I had long savored.
So well, how they flavored
my life as I knew it,
my life as I knew it–then.

I look in the mirror.
A shadow of self.

I look in the mirror.
Two eyes that can see
others turning away,
never sure what to say;
how they flee, run away
or just never come near.

And the fear
looms so large
overhead,
full of dread,
nothing said,
not a whisper
but only a darkening cloud.

Every day, feeling harder,
the way, feeling harder.

And how to endure
to endure
to endure
to endure
to endure?

I reach out,
no one there.
I beseech.
Do I dare
fall to knees,
risk the fool
even more?
How they stare
or ignore.

Can I bear?

Broken heart
in my hands.
Broken heart
on my sleeve.
Broken heart
in my eyes,
in my voice,
in my breath.

To be well,
my great Quest.
To be well,
your For-Granted.
T’be well, my return
to the start of the line
if I ever can make it back
there once again.

If I only can get
myself well once again
and begin my life
over again. If I can.

The Dress

I woke up aching all over, especially my legs and back. I thought about the dress I needed for Paul’s wedding. Mother of the groom, I had to have something nice to wear. I had to force myself up, take a bath, because I knew the warm water would help. My left ear was ringing. I got in the tub and it felt good to lie there. My jaws hurt all the way up to my eyes. I’d been clenching my teeth in my sleep, I knew. I remembered a dream. I was at Claire’s house and she and her husband and another couple were standing there with Jim, looking at something. I remember trying to smile. But I had to take a chair and sit while they stood. I was uncomfortable having to do this, but I couldn’t stand up anymore. I tried to look normal, but felt I was making a spectacle of myself. I woke up suddenly. My heart was pounding, anxiety gripped me and I was soaked with sweat. I couldn’t get back to sleep for hours. Now, as I dried myself, I looked in the mirror. I was so pale. Never been pale like this before. No wonder. I don’t get out much, don’t work in the garden anymore, and only take short walks now. My face in the mirror looked old, bags under my eyes, deep circles. I’ve lost weight. But everyone tells me I look just fine. How could that be? It’s a year now that I’ve had CFS.

Talking to Ann on the phone, I told her I dreaded having to go shopping, that I just didn’t have the energy for it.

“I’ll take you,” she said.

“Really? That’s great. But you’re sure it’s not too much trouble?” My heart started to pound, adrenaline doing it’s rapid heartbeat number on me. Once it starts, it won’t stop for hours.

“Not at all,” she said cheerfully. “I’ll take you. Let’s set a time. Paul’s wedding is on the 17th, right?”

“Yes, it is.” Such a good friend. “Where should we go?”

“Well, it depends on how much you want to spend.”

“No more than $200. I’ll have to buy shoes, too.” And, I thought, I want to give Paul and Annie a couple of thousand dollars to get the things they needed. “Are you sure it’s not too much trouble for you?”

“Oh, Eva! I’ll be happy to do it. What kind of dress are you looking for?”

“Something simple, maybe silk. I was thinking of gray silk, to go with my hair.” Maybe I should dye my hair. I know she thinks I should. And she probably would tell me to cut it, if I asked her. I’m sure she thinks it looks witchy. Long, gray hair is kind of witchy, and now that I look so awful…..

We arranged a date for the following Thursday. I would drive down to her place, about twenty minutes from here and then she’d drive us around to the discount stores on Rte. 4. When I hung up the phone, I felt so relieved. At least she’d be with me to help look. Jim would have gone with me, but he hates shopping. Ann loves it.

Then I went for a walk–alone, because I had just had a fight with Jim. Over nothing. I can’t even remember why I got so angry. The Hudson was calm, gray, with a silver splash of the rising sun on it. I’m sad. I feel cut off, useless. Jim has to do most of the housework that I did before. We almost never go out with people anymore. I can’t count on being up for it. Sometimes I think, I’m afraid I’m going to die of this. People don’t die of CFS they say, but I’m afraid that I’m going to get something because of the CFS, that it has weakened me so much that my system will fail and I’ll become susceptible to some lurking condition within me. Cancer, say.

I met two people on my way back to the car. A jogger with his German shepherd and an older man. I said hello to the older man. Again, I thought about getting a dog. Our dog died two years ago and I’d like to get another one. Jim is afraid that it will all be on him, that he’ll have to jump up and go out first thing with the dog. It’s true, I’m not reliable now. I never know how I’ll be. But I’d like a dog. I think a dog would make me go out every day, even when I’m not quite feeling up to it. Maybe it would be good for me. A dog’s eagerness, that positive way they have, the way they greet the day and every chance to go out, it might be an up for me. As I walked, I could feel my right hip grinding in its socket. It hurt.

Two days before we were to meet, Ann called me. “I found three dresses for you.”

“Oh, Ann! You did? Where? What do they look like?” My heartbeat increased. I should get used to this, I thought, but I can’t. Any excitement, good or bad, is exhausting.

“Well, I went to Loehmann’s, to Daffy’s and The Engle Shop. I asked them to hold the dresses for us till we get there on Thursday at about 10:30. Is that all right?”

“That’s wonderful! You’re terrific! How did you do that?” They probably won’t be right. Maybe I’ll buy a dress even if it isn’t just right. I don’t know….

“It wasn’t so hard. I just went in and told them what you’re looking for and that it’s for your son’s wedding. Then I told them you were sick, that you have Chronic Fatigue, and that they should hold them for you, that we’ll be there Thursday morning.”

“That’s incredible, Ann! You’re wonderful! What do the dresses look like?” If one of them is halfway acceptable, I should buy it, even if it isn’t just right. I can’t really do this alone and I can’t be fussy.

The day before we were to meet, I got my period. I’m 53 and going through menopause this year. My period comes in strange ways, either a flood with huge clots, or a stain. My cramps are worse than they’ve ever been. I have night sweats. Since CFS could cause this, I don’t know which it is.

Thursday morning, we were in her car.

“Where would you like to go first?” she asked.

“Tell me which dress you think would be best for me.”

“I’m not sure, but the one at Daffy’s is almost what you described. But you know The Engle Shop is closer, so maybe we should start there.”

“No, let’s go to Daffy’s.”

The dress was unbelievable. It was a beautiful, soft green silk crepe, sewn and draped to look like a wraparound dress, with a deep V and squarish shoulder pads. I put it on and it was perfect. A very 40’s look, a movie dress, it looked like it needed a long cigarette holder and long hair to look out from under on one side, the other swept back.

Business-like and friendly as usual, Ann looked me over and said, “It needs some alterations. I’ll call my tailor right now and make an appointment. Maybe he’ll be able to see us right away.”

She was taking care of me. A good friend, she always, always asks how I’m feeling. And I’m always afraid to say. People don’t call me as often, because they have to ask how I am. I used to say ok, and switch the topic to them. But I can’t do this anymore. It makes me feel too cut off.

I relaxed a little. As I looked at myself in the mirror, I marveled at the dress. It fit me so well, just needed the hem taken up a bit and perhaps the sleeves shortened. How did Ann find this? I actually looked good, even beautiful, I had to admit, with my long gray hair, my coloring, and the way it flattered my figure. As I undressed, smiling, Ann reappeared.

“He’ll take us in an hour.”

“Fantastic, Ann! I don’t know how you did this. It’s just amazing. I’m not sure I could do it for you.”

She smiled. “I’m glad the dress fits. It does look good on you. Since we have some time, do you want to look around?”

I pulled on my slacks. “Yes, let’s do that,” I said, with the enthusiasm of such an easy success.

I started to go through the racks, feeling the soft silks and fine woolens. My left ear was ringing, as usual. I stopped taking aspirin for the joint pains because I thought it was the cause of the loud ringing. It wasn’t. Suddenly, a wave of exhaustion hit. I knew I had to sit down, couldn’t stand up any more. The exhaustion was like an enveloping shroud, a sensation of being dragged down. I’d better get home soon, I thought. Once this starts, it ends with me on the couch, asleep under the heavy quilt. “And then, aren’t you rested when you wake up?” asked the husband of a friend, looking at me doubtfully as if I were inventing symptoms. “No, I’m not,” I said, “It’s that I have to sleep, but it isn’t refreshing.” And just once I’d like to read a novel. For the past year, I haven’t read a book. It was only 11AM and I was tired, bone tired. My eyes ached and watered. My joints ached. My thighs tingled.

I looked around. Where was Ann? There, two aisles away, she was looking through coats. I walked over to her, feeling the numbing lethargy grow. “Ann, I’m really tired. I’ll just pay for this and maybe we could go sit in the car,” I said, thinking guiltily, I’m sure she wanted to look around.

“Fine,” she answered with a smile, “Let’s do that. Maybe he’ll be ready if we get there a little early. We’ll just drive on over there.”

The wait was only ten minutes. Frank, the tailor, fitted the dress, put a dart in the back and raised the hem slightly and shortened the sleeves. As he chalked the dress and pinned it, I stood on a little, wooden platform, turning when he told me to. Twice, I thought I was going to fall, to collapse on the floor. I focused on a spot of the wall and clenched my fists, which seemed to help the dizziness. I didn’t fall. Ann sat and watched. The dress looked even better when he was done with the pinning.

A little later, we were sitting across from each other at Ann’s kitchen table.

“You look tired.”

“I am. I should get myself together and go home to rest. Ann, I can’t tell you what a miracle all this is for me. I couldn’t have done it alone. You’re fantastic!”

She smiled. “I was glad to be able to help out. Now, what kind of shoes do you want?”

We talked about shoes for a few minutes and she said she’d see if she could find some in the neighborhood. “I’ll call you and we could get together again next Thursday. He said he’ll have the dress ready for you then.”

“Great! I can’t tell you how much I appreciate all this. You’re going to so much trouble.”

“I’m glad to do it. You’ve helped me, too, when I needed it.” On the way home, feeling like I was wrapped in cotton batting, that the drive was unreal, waves of shivers passed through me. When this happens, and it often does, it’s a sign to me that I’ve overdone it, gone over the limit. But how can I get anything done at all unless I push a little, I thought angrily. I remembered the times I helped Ann – when her mother was in the nursing home and we moved her things there, when she and her mother had a consultation with the doctor and Ann wanted me there to hear what the doctor said. She was very upset and afraid she wouldn’t be able to ask the right questions. I was there for her then. And she had just done the same for me. But how could she have picked out such a perfect dress? I knew I couldn’t have done that for her.

The dress was a big hit. Everyone at the wedding complimented me on it, said how well I looked, a little tired, but well. My son Paul loved it. And despite my exhaustion throughout the entire wedding, I felt good about the way I looked. I had to rest the whole day before and that morning so that I’d have some energy for the evening wedding. Then at three o’clock, I bathed and dressed. The dress was wonderful. I put it on and forgot about it. A rare thing to have a dress like that. Not once did I have to check myself in the mirror.