VIEW FROM THE COUCH -- REFLECTIONS OF A CFIDS LADY

PHAT THAI

2011-07-13T16:31:00.000-07:00

PHAT THAI

I am sitting in a family diner in my favorite Rochester neighborhood. I have always liked this homey restaurant, but I have become a more frequent visitor since the Vietnamese cook from the diner down the street became the owner here. Now, the menu includes wonderful Asian dishes, as well as the usual diner fare. Phat Thai is my usual order, with extra peanuts and a slice of lime.

I have chosen to sit at a table directly facing the small Buddhist shrine set up by the owner. The lights, colors, and shimmer of bronze make it a peaceful sight. I sit here as often as possible because it transforms how I feel.

I think of my dear Laotian brother, Bounchanh, as I sit here. Before he moved back to Laos, I asked him for advice on meditation. Meditation.. He had shared his own meditation practice with me. Every day he would ask Buddha to help him with the one thing that was most important to him.

I am asking Buddha to help me to stop being disappointed in myself. I want to see the beauty in myself. I want to discover the unique creativity and spirituality that has come from the unique life that is mine and only mine.

I have been unable to write for over a year now. At first, it was the flood of grief that engulfed me when Tasha, my beloved black shepherd, died so suddenly on January 21, 2009. Then it was the ever increasing fatigue and deepening depression that turned out to be symptoms of worsening diabetes. With the introduction of insulin into my health care in late December, the leaden weight of a body starving for energy lifted.

When I regained some energy and focus in January and February, I think I began to hope that it would all go away: not just the out-of-control blood sugar problems caused by diabetes, but also the Chronic Fatigue Syndrome, Fibromyalgia, and Neurocardiogenic Syncope. These diseases have disabled me for nineteen and a half years – one-third of my life. I have attempted to return to work seven different times, but each effort landed me back in complete bed rest for weeks and often months. There is no treatment or cure for most of what I have.

Every day this week I looked around at dirty dishes, trash, dusty floors, and papers that needed recycling. I had just returned from a nine day trip to see my eighty-eight year old mother in Maine. I had tried so hard to do things around the house there: helping with meal preparation, doing the wash – but each time I ended up collapsing in tears and exhaustion. I am ashamed of my life. It seems so limited.

Shame is a useless thing. Better suited for Bernie Madoff than me. Yet the irony is that I am sure this sentiment never surfaces in his consciousness, when he has wiped out the lives of so many people. On the other hand, I was working as a full-time parish minister when a dramatic onset of illness left me disabled. My whole life had been focused on helping others, both as a teacher and as a minister. I am constantly riddled with shame for being unable to continue this.

Shame keeps me from telling the story I need to tell. Shame prevents me from enjoying the life I do have. When shame comes to visit me, I am unusually caught unaware and with open ears, listen to its voice.

“You never reached your potential....”

“You have been ill too long....”

“You should never have another relationship. You have proven that you can't make them
work....”

“You weren't taught to keep house this way....”

“You embarrass your family....”

“You must have brought your troubles on yourself....”

I am so polite. I listen too long.

I see myself sitting on a rocky ledge high up the side of a mountain. In front of me is a spectacular panorama.

But I can't see it. Because shame is a giant. It blocks the view.

It is my turn to talk.

“Excuse me. I need to feel the silence and hear the breeze. I know you are tired from
carrying that burden.”

I suggest that Shame stroll down the nearby mountain path and sit beneath the shade of the old maple tree. I tell her that a neighbor will bring her afternoon tea and cookies.

I am by myself at last. I look out at the contrast of dark green mountains and Titian blue sky. I feel the happiness of it all.

I glance down the slope to watch Shame setting its burden down in the alpine grass. As the wind rustles in the leaves of the old tree, I catch another glimpse of the sitting giant.

When she thought that no one looking, Shame smiled.

Comes The Night

2011-03-24T21:59:00.001-07:00

Comes the night, the late midnight hours, and for just a while, I feel better than in any of my other waking hours. I lie on my bed, propped up by pillows and teddy bears. My mood is light. My mind is alert. My creativity is just below the surface.

For a few brief hours, I almost feel so good that I can pretend I am not extremely ill. I can just imagine that I am resting and readying myself for sleep after a day full of activity, the way life used to be.

I go to my nightly haunt, my time on Farm Town. Such a silly game, really. Seeding virtual crops. Constructing virtual buildings. Planting lovely flowers. Harvesting. Fishing. Milking the cows. Gathering the wool. Living a busy life, as I can no longer do. I am losing the ability to stand, and long ago, some 20 years ago, I lost the strength and endurance to do physical work.

I now have eight farms, whereas in real life I have almost nothing, not even a car. As my Farm Town friend from Turkey once said, "In Farm Town, the weather is always good.....never too hot.....never too cold. No problems. Everything is good in Farm Town."

Farm Town has an interactive element to it. It took me awhile to find it, but now, it has changed my life.

I take my avatar, Peggy-Sue, to the marketplace and get hired to work for other people. At least that was how it started. Someone hires me to harvest or plow or chop trees. etc. They take me to their farm, and I earn experience points which allow me to progress to a higher level.

When I first entered the marketplace, I was silly. I would have Peggy-Sue say silly things, usually singing snippets of songs......."Hi Ho, Hi ho, it's off to work I go" or "I whistle while I work...". One night another avatar said, "Well, I fart while I work." And here was a bunch of about 15 avatars with little cartoon shapes saying "LOL". I could not stop laughing.

Farm Town allows you to chat with people on your farms. Most people would just hire me and thank me when I was done. Then I timidly tried something new when I sense that the other person was friendly. "I am from Rochester, New York, USA. Do you mind my asking where you are from?" If they answered and added a little more, we would start to chat.

I am amazed at what happened in many of these "chats". I met many other people, mostly women, but not all, who were very sick and only felt well in the middle of the night. Most of these people lived in the United States or Canada or Jamaica, so our time zones sort of meshed.

But I also began meeting other people. Because I was up in the middle of the night, I met people from all around the globe: the teacher of autistic children in New Zealand who was just starting her day; the young woman in the Philippines who just got a job working for Coca Cola and who helped her father make cookies for his modest business; the artistic teenager in Vietnam who just celebrated her 17th birthday; the very lonely woman in Tanzania who struggles with no one understanding her fight against lupus; the single mother who is an amazing oil painter in Istanbul; the woman in Oslo whose second marriage was to her penpal in Scotland; the husband and wife in Brisbane, Australia who worked on rescuing animals from the zoo when they had the terrible floods recently; the teacher near Melbourne, Australia who wants to call me on the phone or talk to me on Skype so we can get to know each other better -- and tell jokes; my friend in southwestern Virginia who met her second husband, who lived in England at the time, through a word game on the Internet.

These are the ones I can think of at this moment. I know there are more.

There are other amazing friendships that have developed through Facebook. I am very close to a single mom in South Africa who is an activist like I was when I was a pastor of a church. She read an article I wrote about gratitude in the Gratefulness.org newsletter, and asked to write to me. Because we are friends and comment back and forth on each other's post, several of her friends have asked to be friends with me.

One of these is a young woman stuck without a job, living with her parents who are just barely getting through each day with no help, as her father is dying of cancer. One night, when I started chatting with her, she said she was very depressed. Then she went on to tell me she was thinking of killing herself. I kept chatting with her, while contacting my good friend who lives in the same city and knows this young woman well. My single parent activist friend ended up calling up the young woman who suicidal and finding a way to meet with her. How, how, how....is something like this possible? This was a deeply spiritual experience.

There is the young man in Chenai, India, who knows he should marry soon, but who dreams to be a filmmaker. I told him all about my summer in India as an exchange student when I was 17, so he knows I am very interested in India. He calls me Aunty and asks me for advice on life.

In the middle of one night, I was chatting with a woman whom I thought lived in California. She was having an asthma attack and could not get help. I spent two hours talking to her while she tried to get through this. Then she sent me a note. "It is wonderful to know that people really care about other people and that someone reached out to help me, even from the other side of the globe." It turned out that she lives in Australia.

I subscribe to the Dalai Lama postings, as I love to read his words and learn about his travels. One night, they showed photos of him in Sarnath, India. I visited Sarnath the summer I lived in Varanasi. It is the place where Buddha first preached. I wrote several comments about how happy it made me to see those photos and remember being there.

Within two minutes I had a friend request. I thought the name might be Hindi. I accepted the request. It turned out that this young man is from Nepal, has studied Sanscrit, and works in Katmandu. We chat almost every single night, sometimes about simple things, but mostly about the meaningful things in life: kindness, spirituality, acceptance, serving others......I could go on and on. We learn from each other. We always greet each other with "Namaste". He calls me "Madam Mary Lou" because he says he is "small" compared to me and not nearly so wise.

I do not have words adequate for these experiences. My friend in New Zealand, with whom I talk almost daily, is from Christ Church and has lived through the devastation of two earthquakes within six months. One of my friends in the USA is a truck driver's wife, who is taking care of a very sick father and an aging mother. My friend in northern California is dealing with her mother's Alzheimer's and comes on Farm Town and talks to me, as she talks to almost no one else.

There are two women in California who I met on Farmville, and with whom I became close. For one, it was that we had diabetes in common. Then when her good friend took his own life, I reached out to her, as I had been through this several times and tried to support her, as she supported his family. Last summer, she came to the next county to see her dying grandmother. My friend drove in here so that we could have five hours together. It was wonderful.

The other close friend in California is just a little older than I am. When we first became friends, I read through her profile, and noticed with great sadness that one of her children had died. I wrote to her about this, and she wrote back, saying no one had never even noticed it before. That beautiful young man had killed himself, and this woman was struggling. I learned about her pain, and she learned about the pain of my illness. We talk about faith and life and care very much about each other. We hope so much to meet someday. There is a spiritual bond between us.

Sometimes, in the wee hours of the morning, I can almost pretend that I am not physically ill. But it is in the middle of the night, when I chat back and forth with so many people from so many walks of life, that I feel most fully alive. I know God walks between us. I know that distance is a matter of measurement -- but in the heart, there is no distance at all.

Every early morning, when I finally shut down the computer, I almost always say goodnight to two women: the one in New Zealand and the one in southwestern Virginia. "Have a good night's sleep." "Cya tomorrow." "Sweet dreams".

These hours of grace are such a gift in my life. They have changed me. I am more at peace. I am more alive.

"Ireland's Child"

2010-08-18T13:41:00.000-07:00

Ireland's Child

2010-06-21T23:46:00.000-07:00

In January, 2010, 15 year old Phoebe Prince, of South Hadley, Massachusetts, took her own life after three months of continuous bullying in her school. Some of this bullying was done via Facebook. We, the members of this group, pledge to work to end all bullying, but, in particular, bullying on Facebook.

For some time now, I have been working on a song in memory of Phoebe, whether it be instrumental or voice and accompaniment. For months, I had just the chorus, without the complete chording. Today, I sat at the piano and was given the ability to finish the song, with all the verses. If I can find a way to record this, I hope to post it on the Facebook site: A Promise To Phoebe, A Commitment To End Bullying On Facebook.

But for now, here are the words:

IRELAND'S CHILD

lyrics and music by Mary Lou Worster Anderson (c) 2010

dedicated to Phoebe Prince

CHORUS:

Oh, Ireland's child, what did they do?
They broke the golden heart in you.
And now you're sheltered in God's arms,
Where ne'er a soul can do you harm, oh.....

From County Clare, far 'cross the sea,
Your family left their ancient land,
They hoped to build a life more full,
To change their hand, oh....

The fairest flower of all the field,
With laughing eyes and beauteous smile,
Tho' lovely, is so oft by envy caught
And reviled, oh....

CHORUS

While nightmares cloud the skies of dreams,
They do retreat with the dawn of day,
Yet all her terrors did remain,
Not go away, oh.....

A cry for help, a mother's plea,
Fell on minds that would not bend,
And so with a scarf she held so dear,
She found an end, oh.....

CHORUS

oh.....,
oh....,
oh.....

Rest In Peace, dear Phoebe.

Reflections On Memorial Day, 5/27/07

2010-05-28T12:45:00.000-07:00

Dedicated To All Those From My Hometown Who Gave Their Lives To Protect Our Country

written on 5/27/07

Today is Memorial Day. For me, this day is one full of many images from my youth, experiences of young adulthood, and reflections on the world in which I live today.

I grew up in a village of around 3,000 people. It was a momentus occasion when there were special town events. The annual Memorial Day parade in Painted Post, New York was grand.

My memories of these go back to when I was very young. My brothers, myself, and all of my friends on Erwin Street would spend hour upon hour weaving red, white and blue crepe paper streamers through the spokes of everything from tricycles to adult sized bikes. For finishing touches, dangling streamers and little flags were attached to the handlebars.

Each family would load the bicycles and the children who would ride them into the car. They would take them to the starting point of the parade, in the middle of Painted Post. The bikes were the last part of the big parade, and we were so proud to be there.

Each year the parade was led by several large automobiles with very important people in them. I was young. I had no idea who they were. I just knew they were important. It might have included the mayor, veterans from our community, and perhaps, even a beauty queen. I, also, recall one or two decorated floats. Or was that Colonial Days? Or both?

What I remember most is waving to all the bystanders along the road, sitting in their colorful folding chairs, perched atop a father's shoulders, or sitting on blankets on the ground. Everyone cheered us on. I, too, felt important.

After the cars came the marching band. When I was small, this band was very small from the local village high school. When I was older, a condolidated school district had been formed. We had a large, new high school with a bigger, more impressive band. In my memories, both bands were wonderful. Oh, yes, and there were majorettes twirling those glimmering batons, keeping the beat ahead of the band.

The children waited a long, long time to ride those carefully decorated, patriotic bikes. We were excited. We were full of energy. We loved it when we could start. Each one of us was part of a magical band of color waving down the road.

The Memorial Day parade always ended in the same place: the village cemetery. A minister would say a few words, followed by a prayer. It took a lot of effort to be quiet. Then, one lone trumpeter would play "Taps." We could all feel the emotion in those moments.

When I was a young teenager, the soldier who had been the Painted Post star high school quarterback was killed in Vietnam. That was the year that war and the unfathomable loss of war became real for me. When "Taps" was played that year, I cried.

Many years later, I visited "The Wall", the Vietnam Memorial, in Washington, D.C. I searched and searched until I found that young man's name etched in an endless list of names: each one someone's son, someone's father, someone's sister, someone's sweetheart. I left a candle in the spot in front of Eddie's name. The sea of names was overwhelming. I cried then, as well.

Today is Memorial Day. I am so much older now, and my awareness of war has grown. The World War II Veterans are dying out. In Painted Post, they were my friends and neighbors. I will always remember them.

Over the years, many veterans have shared their services stories with me. As a pastor of a church, I tended to hear the most difficult ones: health struggles after exposure to Agent Orange, Post Traumatic Stress Disorder, and the undefined disabilities of the Gulf War. Now the stories also include Iraq and Afghanistan.

Yesterday, the headline for our city newspaper was the news of the death of a young soldier from one of the communities in which we used to live.. He is survived by a wife and baby. It feels like Vietnam all over again.

On this Memorial Day, I pray that we honor the memory of all those who fought and died for us. This is not a day about politics. It is a day about sacrifice.

I often wonder if my hometown still has a Memorial Day parade. Should I return, would I see the grandchildren of my friends riding their red, white and blue tricycles proudly through the town?

Though the list has grown to a long one over the years, on each Memorial Day, I always remember that first one whose death changed my perception of life. Every time I visit Washington, D.C., I go to The Wall, and find his name. I touch the etched letters. And, each time, I cry.

You Can Deck Me With A Whiff Of The Wind

2010-03-08T15:59:00.000-08:00

I hate this disease.

Just when I begin to grasp some new chance to participate in life again, it rises up before me, like some mythical monster, mighty and high, wide and powerful. It leans its head downwards towards my frail body and blows a tiny breath, a poof, ever so small against my being. And once more I am slammed downward into my place on the couch.

"You dared to try something new. You grabbed a chance to have a small part in a play. You were sure you had it all worked out. Well, I will show you, once again, who is in charge!!"

I am here once again, discouraged, defeated, disheartened. Aches in every muscle and joint. Headache that nothing will ease. All concentration and memory gone. Sore throat and throbbing sinuses setting in. Battered back once again by a brutal master.

While the Centers For Disease Control continue their twenty-five year squabbling to discredit the validity of this disease as a real physical illness and and play out their political maneuvering to discredit any research that points to a cause or a future treatment, I enter my twentieth year of living with this modern plague. Chronic Fatigue Syndrome. Fibromyalgia. Chronic Fatigue Immune Dysfunction Syndrome. Myalgic Encephalomyalitis (yes, the rest of the world gives this a medical name). Dastardly Destructive Demonic Disease.

I will continue my valiant cause of outsmarting this illness. In the dark of night, where only shadows can guide me, I will find my own personal palace, a hidden cave where the wind cannot reach me. I will continue to whisper or shout my defiance: "You may knock me down -- but you may not have my life!"

Seeing Through A Different Lens

2009-11-28T01:41:00.000-08:00

I have not been able to write for a while. I began to get discouraged, not knowing whether or not anyone ever read my blog. Was I just writing for the wind? Did anything I perceived matter to anyone?

Shortly after, I learned that the pravastatin which I had been taking to lower my cholesterol can have side effects of causing and/or increasing depression, bringing on insomnia, anxiety, nightmares, etc.....

I stopped the pravastatin, and slowly, the lead blanket of depression lifted.

And then I received the note from a kind friend who had read almost all of my blog and found it terribly depressing. She was praying for me to feel better.

I almost abandoned this new project. Over the days since I last wrote something here, I have thought a lot about the writing and songwriting I have done since I was very young.

Somehow, I was born with a different set of glasses from most people. God gave me an ability to empathize with all the people I meet. I have always felt a connection with people whose lives were far different from my own. I find myself deep in prayer and meditation for friends and family, but the meditation leads me to new places. I do not steer the meditation.

One of the first songs I ever learned to play and sing was "There But For Fortune", written by the singer/songwriter Phil Ochs in 1963. I was so drawn to this song, as I believed that compassion should be the guiding principle of life. I should never forget that I am connected to every living being on this planet, and that it is only by the fortune of birth or experience that I have had certain advantages or escaped haunting pain.

Any child could be my child. Any poor person sifting through trash cans for food could be me. Any family torn apart by war could be mine.

I try to write about life as I see it. My adopted Laotian brother, Bounchanh, is a devout Buddhist and has even spent time as a monk in the temple in Vientiane. Many times we talked about spirituality. Buddhists accept that life is full of suffering. The greatest goal, therefore, is to be compassionate.

Compassion, love, faith, hope: these are the powers which carry us through the sufferings of life and which can transform our experiences into something of meaning and something which can be used to help another person.

So, to my dear friend who was so troubled by my writing, I have always seen the world through this set of glasses. I have always dealt better with the suffering in life by staring it straight in the eyes. My songs, my poetry, and now my prose reflections are all an extension of the pair of glasses God gave me long ago. I look for meaning in it all, and I try to express the deeper levels of spirituality and humanity that I see in the world around me.

Dawning of the Day

2009-11-17T23:08:00.001-08:00

A friend of mine is going through the shock and grief of losing a friend to "suicide by cop". Not only is she dealing with her own loss, but she is also trying to support the family of this man through this journey. Over four years ago, a dear friend of mine took his life, and about twenty of us who had known him well through all the music we had shared returned to our alma mater to conduct a special memorial service for him. As I struggling with my own deep pain, a song came to me to write. I told my friend in California that I would post the words to this song, which I sang at that service in Vermont.

There are never adequate answers for suicide. There are so many questions, so much unknown, both anger and grief. I wish I could post the entire song, but I am still working on mixing the recording of this song. So, for you, Jaimie, here are the words. They reflect my own struggle and grief. I hope these words may help someone else.

A DAWNING OF THE DAY
(c) Mary Lou Worster Anderson 2006

(written in memory of Tim Rowe)

What was the sorrow inside of you?
What were the words you couldn't say?
What was the shattering that broke your heart?
What deep despair took you away?

But, rest, my friend, now, for all is well,
The angels guide you on your way;
Peace, my friend, you are still so very near;
There will be a dawning of the day.

What is this mirror we hold in hand,
The light so dim we cannot see?
It is by trust we tread this pathway;
Life finds its way through mystery.

But, rest, my friends, now, for all is well,
The angels guide him on his way;
Peace, my friends, he is still so very near;
There will be a dawning of the day.

One day the veil will be lifted,
And we will see the sky above;
There is a power surrounding us
With faith and hope and love.

But, rest, my friends, now, for all is well,
The angels guide us on our way;
Peace, my friends, those we've lost are still so near;
There will be a dawning of the day.

But, rest, my friends, now, for all is well,
The angels guide us on our way;
Peace, my friends, those we've loved are still so near;
There will be a dawning of the day.
There will be a dawning of the day.

The Fire On Upton Street -- UNSUNG ANGELS

2009-11-08T18:10:00.000-08:00

UNSUNG ANGELS -- written in May, 2008

It has been three months and five days since the fire that changed our neighborhood. Between then and now, I have moved, though only five blocks away. I have spent almost all of my energy trying to get unpacked and resettled.

For me, this takes longer than for some people, as I have had Chronic Fatigue Syndrome for seventeen and a half years. During this time I have reflected a great deal about the senior citizens and disabled adults who live in the high rise, subsidized, city run apartments directly behind the house that was on fire. I have interviewed my friend, Fran, and spent time standing in the parking lot where many of them were that early morning, trying to imagine just what they experienced.

Fran was awakened sometime between two-thirty and three by the smell of the smoke and the bright light of flames that flashed out of the house's windows, arcing upwards from the first floor window into the second floor. One whole side of the high rise building faces that ill-fated house on Upton Street.

Fran was one of the first to call in the fire to 911. She immediately got dressed to go outside, transferred into her motorized wheelchair, and headed for the third floor elevator.

When she pushed the button and the door opened, there was a man who was so panicked about checking his car that he tried to make her wait for the next elevator. Fran knew this was all very irrational and forced her way onto this elevator.

Between fifteen and twenty people from the high rise went to the parking lot next to the house that was burning. There was a great deal of fear that their own building could catch fire, a very real concern since the branches from the tall trees behind that house had not been trimmed by either the City of Rochester or Rochester Gas and Electric.

These branches brought the trees closer to each other and closer to the high rise. If there had been even the slightest wind, the apartment building could have easily caught fire.

While trying to understand just what my neighbors experienced that night, I was greatly disturbed to learn that the City's Housing Authority and Fire Department had no set plan to rescue wheelchair bound people from that building. There never has been a specific plan, so most of my friends in wheelchairs assume that, should there be a fire, they will simply go up in flames with the rest of the building.

Some of the people in the parking lot that night were simply terrified that they might lose their homes. They were afraid that disabled neighbors might not get out.

Some were simply in shock, watching the flames shoot out of the building in surreal patterns.

Others were there out of great concern for the Rochester Institute of Technology students who lived in that house, as almost everyone in the neighborhood greeted them on their way to the Corner Store.

Blankets were brought out to try to keep the girl and the two young men warm. Clothing was brought for the girl, who had run from the house stark naked. People stayed near to her while she sobbed. Others watched the two young men who paced back and forth, just keeping an eye on them.

For most of my neighbors who went out to the parking lot that night, it was fear, concern, and kindness that led them there. They were the unsung angels.

When the Red Cross volunteers talked to the building's social worker a few days later about visiting the residents of the tower, she said that they would have been asleep and wouldn't have been affected by it at all.

I have wondered many times if this City employee ever even spoke to the residents of University Tower about the fire. How could she have turned the help of the Red Cross away, when these wonderful neighbors needed someone to talk to afterwards just as much, if not more than, anyone else in our neighborhood? And why did she assume they did not wake up? Why did she think it had not affected them? Did she know of their kindness?

The social worker did not live there. Her answer revealed that she did not even know the senior citizens and disabled adults for whom she was supposed to provide service.

On Friday night, I placed the two roses on the gate in front of the house: one for Seth and one for Sayid. More flowers and other symbols of the love and sadness of our neighborhood, appeared over the next few days.

On Saturday morning, my friend, Fran, went to the Public Market in her motorized wheelchair. She was the President Pro Tem of the tenants association for the building. She wanted there to be flowers in front of the house from all of the residents. Seth and Sayid had chosen to live in our neighborhood, instead of miles away on the RIT campus, because they loved it there.

Fran wanted to find locally grown flowers that would last a while in the cold. A local flower seller at the public market suggested some tiny, purple flowers that were very sturdy. On her way home, she found a vase at the flea market. Everything was from the neighborhood, which was what Seth and Ali would have wanted.

I wish I could have witnessed what happened later on that Saturday afternoon. I have imagined it many times in my mind.

We live in a city full of violence, in which the tension between rich and poor, and people of different races is felt by all. This one act on behalf of the residents of the high rise apartments gave me hope.

Fran is Caucasian. Her friend, Cherylnn, is African American. Both women travel by wheelchair. These two neighbors set out in their motorized vehicles down the elevator, across the sidewalks, and across the parking lot to the gate in front of the house on Upton Street.

One of them carried the vase with the beautiful purple flowers. The other carried a Bible.

They placed the vase in front of the gate, where it could be easily seen by all. It was nearing the end of the day. It was that time of the year when twilight seems to come so early. Soon it would be dark.

These two women living with disabilities, from two different races, stayed near all the flowers by the gate. They remained together in front of this place of tragedy. They held hands and read the 23rd Psalm together.

I do not know which translation they used. I have placed here the one most familiar to people. This quiet act of deep spirituality spoke louder to me than the voices of a thousand choirs. Truly, the voices of the angels spoke through these two women in their gentle tribute to two wonderful young men who had been their neighbors.

"The LORD is my shepherd;
I shall not want.
He maketh me to lie down
in green pastures:
He leadeth me beside the still waters.
He restoreth my soul;
He leadeth me in the paths of righteousness
for his name's sake.
Yea, though I walk through the valley
of the shadow of death,
I will fear no evil:
for thou art with me;
Thy rod and thy staff
they comfort me.
Thou preparest a table before me
in the presence of mine enemies:
Thou anointest my head with oil;
My cup runneth over.
Surely goodness and mercy shall follow me
all the days of my life;
And I will dwell in the house
of the LORD for ever."

The Fire On Upton Street - Changed

2009-11-06T23:29:00.000-08:00

In the early morning hours of Friday, November 9, 2007, a fire occurred two houses away from the house in which I had an apartment on the first floor. Two of my neighbors died in that fire.

I wrote a seven part account after that fire. The anniversary comes in two days. Seth and Sayid have been 0n my mind. Today I walked past the building that housed this tragedy. I am going to post my writing from two years ago.

In memory of Seth and Sayid

CHANGED

Saturday, November 17, 2007

I find myself unable to sleep tonight, for my heart is unsettled and sad. It was during these early morning hours only one week ago that life in our neighborhood changed. I had fallen asleep on my son's bed, where I had been sleeping since he had left for Amherst College. Our big, black bear of a dog seemed more content when I slept there in that familiar space next to her.

About 3 a.m., I awakened to her barking."It's just a truck, Tasha," I told her. "Be quiet and go back to sleep."

The barking continued, only by now it was getting louder and more urgent. I dragged myself out of bed and towards the front door. When I pulled back the fading white curtains in the door's window, I could see one of our city's big fire trucks with its lights flashing. It was parked directly in front of our apartment.

"It's just a fire truck, Tasha," I said, just barely awake. "Thank you for telling me. Now, stop barking and go back to sleep."

I had barely stepped next to the bed when the barking started again, and I knew Tasha thought we were in danger. This time I looked out the dining room window and saw another fire truck and two police cars. There was an eerie lightness to the normally dark living room, with flashing red and white lights changing the nighttime hues to a surreal combination of light and dark.

I looked out the living room windows, then out the window to the front porch.There were six or seven fire trucks, police cars surrounding them, hoses and cables stretched along the side street, a strange smoke that touched everything around it, and meticulously organized groups of firefighters going back and forth from some house I couldn't see. I slipped on my shoes and put Tasha on a leash. I wandered out to see what was happening.

It was like walking out into a movie set, but there was no magic of film here. Everything had a disturbingly powerful smell of smoke, but I could not see the source. I was told that the house two doors down was on fire, but that the fire department was working well to contain and extinguish the fire.

I saw my immediate next door neighbors across the street. Shouldn't I leave, too? There was less than eight feet between my apartment and his house, and less than eight feet between his house and the one on fire.

And what about my two cats and the three cats of my upstairs neighbors who worked the night shift?

I was told to go back into my house, that they would let me know if I had to leave. I quickly gathered a few precious things: my young adult son's Panda Bear, a picture of each child when they were babies, a heart-shaped picture of these same two children as toddlers "reading" together on the couch, a small picture of my mother and father, my violin, the dog's leash, a blanket and my jacket. For the next two hours, I was in a daze watching the work of the firemen, frightened for my own safety, and overwhelmed by the feeling that none of this was anything I could control.

I finally fell asleep, curled up in the recliner, with my dog at my feet. When I awoke at eight in the morning, there were only two or three fire trucks left, and several police cars keeping some sense of order. The other vehicles had been replaced by vans from the major TV stations, reporters with mikes, and stands stabilizing cameras.

Once again I went outside with Tasha. I asked the first reporter I could find if anyone had been hurt in the fire. Her eyes filled with tears as she told me that two young men had died in that house and a third was in guarded condition at the hospital. What I couldn't have seen from my side of the house a few hours earlier was the flames that sped through this house so quickly that even working smoke alarms made little difference.

One young woman, an overnight guest, had fled from the first floor out into the parking lot of the high rise apartments next door. Two young men had climbed out onto the small second floor porch and jumped onto the top of one of the cars below to safety.

Many of the senior citizens and disabled residents of the apartment building had come down to the parking lot just to be there with these students who screamed and cried, totally in shock. Blankets were brought to keep them warm, but there was nothing else to do but watch the flames shooting out from the windows.

For the others, there simply had not been enough time. The firefighters rescued the one young man from the second floor, not knowing if he would live or die. The other two young men had died in this nightmare of smoke and flame.

All who had lived there were students at the Rochester Institute of Technology. The two who had died were fourth year students, very smart young men with their whole lives ahead of them. In a few short minutes, those dreams were ended.

"Those were my neighbors," I cried.

I sank down on the front lawn outside of my home, my arms around my dog, holding onto her for comfort. I wept and wept and wept. "Those were my neighbors. Those were my neighbors."

There was still smoke in the air, a burning stench that was inescapable. There was, also, another kind of smoke: a blanket of intense pain that had fallen over all of us, a dull sense of shock that filled the streets of our neighborhood.

In the quiet of an autumn night, two of our neighbors, wonderful young adults, were taken from life too soon. Two of our neighbors had died.

An uninvited guest had taken residence among us. A deep sadness had entered all of our lives in those early morning hours. Our neighborhood had been changed forever.

Kairos

2009-10-26T00:44:00.000-07:00

To my dear friend, my kindred spirit

I stepped outside, the brilliant autumn leaves crunching under my feet. An acute awareness of time hid beneath every breath. It must be the hour, the minute, the second.

My heart and mind were in harmony with a tuning A played by a lone instrument in the streaming light and shadows of a church sanctuary in Manhattan. The orchestra matched that one pitch, and then showered the room with fifths above and below that tone.

It was time to begin. I sensed the anticipation as if I had the best pew.

As I played Frisbee with Blu, the rhythm and counter-melodies and harmonies of Bach stirred within. I heard the lush, warm vibrancy of my dear friend's violin as he caressed the strings with his bow. Passion was there in every strong, rapid attack of infinite intervals. This was life, at its fullest.

What time was it? What place was it? Where was I?

I was in the front row.

It was Kairos.

Afraid Of The Dark

2009-10-25T00:26:00.000-07:00

It is way past midnight. I lie on the love seat, the closest thing I have to a full size couch. My dog, Blu, is stretched out across my legs, sound asleep.

I am reluctant to turn off the television. I don't want to go to bed. Recently, when it is totally quiet and very late, I feel a deep, sad sense of fear.

I am copying the 700 some pages of medical records from my former doctor, before I deliver them to my new doctor. I didn't know I would have this opportunity not only to read my records, but to protect myself by copying them. I need to do this, but the emotional price is high.
My records are filled with "inaccuracies" from all sources. My own doctor has made disparaging comments about me as a person and about the serious medical symptoms with which I must live. They are tacked on to the bottom of report pages from office visits.

He has been my internist and endocrinologist for seventeen years. As I go through these records, which also include reports from outside doctors paid by my disability insurance company, I want to scream -- but I do not want to scare my neighbors. I have cried and cried and cried. I trusted this man, but this trust was not warranted.

The further back I go in test records, the more I am aware of just how negligent he was. He missed the markers, recorded in emergency room visits over years, of a serious, degenerative disorder of the autonomic nervous system of the brain. He didn't even recognize the symptoms of this illness after it was diagnosed by a reputable cardiologist with a tilt table test. One time, his nurse threatened to call the police when I had collapsed from this disabling condition (called Postural Orthostatic Tachycardia Syndrome).

Worse than all of this is what I would call malignant neglect. For over twelve years, he did absolutely nothing about the increasing warning signs of heart disease. It shows up throughout my bloodwork. My new doctor was horrified by my cholesterol and triglyceride numbers, as they are in the upper stratosphere (six years ago, my cholesterol was 339 and my triglyerides were 396). Even without these numbers, diabetics have five times the normal risk for heart attacks.

My new doctor started me on medication and aspirin therapy the very day I first met him. Since I first was made aware of these test results, I had already completely changed my diet and eat enough oatmeal and walnuts that sometimes they appear in my dreams. I lost weight. I exercise. But there is hardly any change. In June of 2008, I spent 30 hours in our local hospital with the symptoms many women experience with heart attacks, but they could not find a cause. Of course, they stopped short of doing an angiogram, because my internist did not think it was necessary.

When it is so quiet and dark, the fear and the sadness is overwhelming. Did I find the new doctor soon enough? Have I already had a silent heart attack (as the new doctor told me I may have had)? Has my life span been greatly shortened by the former, uncaring doctor?

Will I ever get to finish copyrighting and recording the over seventy songs I have written? I want my songs to be heard. I want to record my voice singing them. I ran out of money for recording two and a half years ago. How will I ever find the money to continue?

Will I finish my book? I am so very ill, I can do almost nothing. Will I be able to survive on my own? Will I be able to be of support to my children, who both have the same long term illness that started all this for me? I own nothing. What will become of me?

I have great difficulty writing, when I am paralyzed by fear.

And so, I will simply post the words to one of my favorite songs, knowing that no one will have any idea of the tune, dynamics, accompaniment, or vocal range.

But tonight, I feel much as I did when I wrote this song. It is copyrighted, so I at least know it is mine to post. You can try to imagine the song, but the feelings are all there.

WHAT I MEAN TO SAY

(c) 2006 Mary Lou Worster Anderson

What I mean to say, behind all these tears,
What I mean to say, that no one ever hears
Is, "I am lost here, all alone,
And I can't even find my way home."

What I mean to sing, behind all these sighs,
What I mean to sing and shout across the skies
Is, "I don't even know why, and I don't understand.
Won't somebody, please, take my hand?"

What I need to feel and what I long to know,
For this, I would leave all I have and walk each dusty road
Just to find love that stays
And doesn't run away.

What I mean to pray, behind these feeble words,
Is, "Guide me every day, for life is so absurd,
For I am lost here, all alone,
And I can't even find my way home."

To my readers, whoever you are, may God bless you all.

Blank Verse

2009-10-21T22:49:00.000-07:00

Shakespeare has long been one of my favorite writers in the English language. Shakespearian verse, blank verse, is poetry, dance, and song all unified into one exquisite expression of the human experience. I love to read it. I love to hear it read. I love to see a good production of one of Shakespeare's plays.

In this context, "blank verse" has such an elegant connotation.

What I have been experiencing in the past few weeks is something quite different: not "blank verse" but "blank mind." With the lessening of each's day light, I have found myself slipping into an incrementally worse depression and fatigue. Part of it may still be residual weakness from two and a half weeks of whatever it was that produced a fever and an asthmatic cough.

However, I am also in the middle of changing doctors, and this experience has felt like a huge weight on my soul. I have had to procure the 700 plus pages of my medical records from my former doctor to take to my new doctor. They said they didn't want to pay to mail them, as it would have been too expensive. So, even though I do not have a car, I had to find a time when my daughter could pick them up for me.

This has been a blessing in disguise, though it seemed like a curse. This is my one opportunity in 25 years to make copies of my own medical records. If I request copies from their office, they will charge me 75 cents a page, which is totally prohibitive to me.

In looking through these records, I have been clobbered with depression and shock. They are downright inaccurate. There are reports from other doctors hired by my disability insurance company that don't even sound as if they ever spoke with me at all. It reads like someone else's story.

So I am tired down to the depths of my soul. After nineteen years of medical and psychiatric disability, I feel abandoned, completely alone. I feel hopeless, as these little books of false information keep being passed on from doctor to doctor.

Instead of rage or loud anger, which would require some energy, I feel a quiet despair. I am so damn tired of being sick, misunderstood, poorly treated, and lied about. I hope this terrible fatigue of the mind and heart will ease.

Tonight, when I think of "blank verse", I do not think of the beauty of Shakespearian language. Instead, I think of my inability to write anything on my blog for the past weeks. My mind is so blank, so hurt. My blank verse comes from an emptiness of the heart and a loneliness too aching for words.

What A Difference

2009-10-14T12:57:00.000-07:00

Yesterday, my blog entry, "Surfing the Night", was posted on the website for A Network for Grateful Living. I am amazed how much just seeing it so beautifully laid out, complete with a picture of a computer keyboard, cheered me up. I have been quite ill almost all of the time since posting that last blog.

But every day begins a new page or a new chapter in my life.

I keep thinking of one of the oft said remarks of my dear friend, Bill Smith (don't worry, 12 step folks: he always used his full name. In his obituary, it even said that he was survived by family and many, many friends in aa.).

Bill was a minister's son and a city councilman here in my city. However, this is not how I knew him. I learned these things after he passed away. I knew him as one of our city's oldest and longest sober aa members. When he died over ten years ago, he had thirty-seven years sobriety.

My first aa homegroup, which I joined nineteen years ago, met at 7 a.m. Some of my favorite people in the world were there each day. Bill was there every morning. He was a wise, gentle, spiritual, loving African-American spirit. I thought of him as the shaman of our group.

When people would get greatly discouraged, and, as my health failed, and my career and marriage faded away during the first two years of sobriety, he would often say one of two things -- or sometimes both.

One was, "Don't give up a moment before the miracle happens." This is posted on my Facebook profile.

The other was the one which kept going through my mind today. "WHAT A DIFFERENCE A DAY CAN MAKE!"

Yesterday, I was crying because I felt so completely isolated and unbearably lonely. I felt trapped without a car. Although I can manage to get groceries on the bus on my "better" days, when I get a bad cold or the flu on top of the already barely manageable chronic illnesses, I cannot drive even to get milk. It has been one and a half months since a friend took me to an aa meeting. I have not been to church since Christmas Eve. I have asked the churches with which I have been affiliated for a ride, with no results.

I haven't been able to leave here for any kind of vacation in three and a half years. I long to see the autumn leaves in the hills of the southern tier or Vermont. I want to feel the salt air and the splash of ocean waves. I need the fellowship of other family and friends.

Yesterday, I felt as if I was barely hanging on, about ready to give up on everything, because there has been almost nothing in my life prior to this that prepared me for being this alone. I rode out the rough rocks of the day's climb and was very content to find some peace in sleep.

Today, I received a Facebook request for a new friendship from a fascinating woman in South Africa. She had read my writing on the web site. She wanted to follow what I did and wrote.

I wept. I felt my world moving from the limits of my living room to a much vaster universe. I remembered my experience in India and all the amazing things, good and bad, that I encountered there. I recalled my voyage across the ocean, from New York to Rotterdam, en route to India. Oddest of all my memories are the vivid images of the airports in which we stopped going to and coming from India: Amsterdam, Paris, Geneva, Kuwait, Bombay, Varanasi, New Dehli, Tehran, Beirut, Istanbul, Frankport, London, LaGuardia, and home again to Corning-Elmira.

On this day, I am once again aware that I am part of a larger world. Perhaps my educational background and my years of disability have combined to give me a voice with which to reach out to others and to tell the story of those who have no voice. Perhaps something new will take shape in all of this.

I am grateful for a change of heart.

What a difference a day can make.

"Somebody's Child"

2009-09-13T14:41:00.000-07:00

It was as if someone had slapped me in the face. There was a news break in the middle of a routine Saturday night rerun of "Law and Order".

Three young kids (12, 13, and 15) had been standing on the street corner of a major road here in our increasingly violent city. It had been sometime between eight-thirty and nine o'clock on Friday night. They were just "hanging out" -- talking -- enjoying the nice evening.

Oh, yes, and they happened to be African-American. They were young Black kids, with all of life ahead of them.

One report stated that a bicyclist rode by, someone who observers thought might have been in his late teens or early twenties. Others said a fight was taking place nearby, and, again, some random person walked by these kids.

This would be a normal scene for a street corner on a late summer's night in Rochester, New York.

The most terrifying part of what occurred next is that it has become an ever more frequent report of a nightmare in the community of which I am a part.

The man shot all three kids. One boy was shot in the leg. The second boy was shot in the back and has needed two surgeries so far.

That last child -- the twelve year old girl-- well, this one was unspeakable, so much so that the reporter was having difficulty. He had shot her in the face, and she was in critical condition.

The station showed a recent photo of this lovely young woman with a big, beautiful smile.

How could anyone do this? I sat on the couch, not really watching the television at all, with tears streaming down my face. Then I just sobbed.

When the eleven o'clock news came on a few minutes later, they interviewed a teenager who had been there. The news station reported that police were following any leads they could to try to track this man down. And the girl was still in critical condition.

I kept thinking of that smiling girl in the photo. How could a human being shoot another person in the face?

There was a pause in the reporting, and then the newsperson, once again having to work to hold back tears, told us that this young girl had just died. 11:15 p.m. It was about that time that another inner city family in my hometown lost a child.

Her name was Camry. The three kids had been headed to church.

All I could think of was the song I wrote in September of 2005, after another news report had left me stunned. That day a fifteen year old inner city boy was shot while walking home from the neighborhood community center. He had gone for tutoring after school and took a shortcut across the open lot nearby. His death was the fifth one in three months, all of kids under the age of sixteen.

There are no words to the sadness and the outrage I feel. I have been on disability for eighteen and a half years, but I am always a pastor and always a teacher. I care deeply about the welfare of those with whom I go through life.

I use public transportation. I have been down this bus route many times. I have probably sat across from these three friends on one of those trips.

Once more, I am determined to finish the recording and mixing of this song. I want to send it to the news stations and the mayor and the inner city churches. I hope it might bring healing to someone, somewhere.

SOMEBODY'S CHILD (c) 2006 Mary Lou Worster Anderson

Now the hours of light grow shorter each day,
We glimpse the changes of fall.
But the darkness which around us grows
Is not from the season at all.

And I cry each night, and I pray each day,
For our streets have become so wild.
And every tear that runs down my face
Is for somebody's darling, somebody's child.

Sadness like a blanket weighs down,
I can barely watch news any more.
I don't have to look around the globe
To find a city at war.

And I cry each night, and I pray each day,
For our streets have become so wild.
And every tear that runs down my face
Is for somebody's darling, somebody's child.

On my street, I see each bright young face:
The laughter, the dreams, and the smiles.
Who will they be? What will they become
As they travel life's journeys and miles.

And I cry each night, and I pray each day,
For our streets have become so wild.
And every tear that runs down my face
Is for somebody's darling, somebody's child.

And I cry each night, and I pray each day,
For our streets have become so wild.
And every tear that runs down my face
Is for somebody's darling, somebody's child --

Is for EVERYONE'S DARLING, EVERYONE'S CHILD.

Surfing The Night

2009-09-11T23:43:00.000-07:00

A gift was delivered to me yesterday morning. I had asked that this wish gift might be delivered by a giant stork. However, a newly found friend, a high school classmate of forty-some years ago, had cared more than I realized about my slow descent into deepening depression after my mother's sturdy, but very old computer died.

After reading my Facebook request for a used computer airlifted into my apartment by a giant stork, he asked if a computer sent by a giant dork would do!! This made me smile and laugh. He had actually obtained permission from his boss to send an old computer to me. Such unexpected kindness lifted away the increasing sense of isolation.

He did not tell me it would be a laptop. He did not tell me he would put a spacesaver page of beautiful butterflies on it. He did not tell me it would come to me this soon.

When the doorbell rang at 10:30 yesterday morning, I was still sound asleep. I managed to stumble out of bed and get the door just as the FedEx man was about to get back into his truck. Though I never feel well for the first few hours after I awaken (a Chronic Fatigue Syndrome annoyance), I managed to open the box and begin to set up this computer in a semi-dream state. After two hours, with a pounding headache, I remembered that this diabetic body was demanding food!!

In the past few days, I have experienced a sense of movement, just as I would near the waves of the ocean. I purchased some new clothes at a phenomenal sale, and purposely choose a completely different look for myself. It is not just that I have lost weight. It is that my sense of myself has changed.

And this computer is a part of that movement. It is not merely a functional replacement for something that is broken. It is a tremendous gift of grace. Because it is a laptop, I will be able to write even more freely than I could before, as illness has brought about the necessity for a tremendous amount of bedrest and/or reclining.

However, I am learning how to move within this limitation. It has taken me a long time to do so.

I have been seriously ill, to the point of not being able to maintain any full or part-time work, for almost nineteen years. For many of those years, I tried to return to different kinds of work or train for something new.

By the year 2000, when I realized I was having difficulty standing up for very long, I began to know that my expectations for life had to change. If my physical movement would be limited, then I had to increase the free movement of my creativity, mind, music, relationships, and spirituality. It took me until sometime in 2008 to come to terms with acceptance of this situation.

Of course, I still hope for improvement, new treatments, renewed strength, and unexpected healings. In the meantime, however, I have decided to "surf the waves" of my own creativity. I am determined to find as many activities as possible that I can do while reclining. So far, this has included knitting very thick, colorful scarves (that I call "Rochester" scarves, for our cold, damp winters); working on the lyrics and music of songwriting; working on the writing of a book on my experience of homelessness for five and a half months in 2001-2002; and building (and rebuilding) a large network of friends and family.

So, in the middle of this night, when I would normally be sleeping, I am "surfing the night". I am hyped up by new possibilities. I am smiling for the first time in quite a while. I feel the beating of my heart and the freeform dancing of hope.

OLD FRIENDS

2009-03-20T10:52:00.000-07:00

I have reconnected with an old friend, one I figured would never be a part of my life again. I have become resigned to this life of aloneness -- usually loneliness.

I knew this friend had worked in something related to theater, but I was never sure how or where. I had always hoped that others would see what I always saw, that behind the class jokester was a brilliant, intuitive mind and a genuine creative gift.

It turns out that he has indeed accomplished much in his life. He has played wonderful classic roles on the professional stage. And in this time in his life, he has found love and new life with a family he adores.

But what I never knew what was what he saw in me. He told so many jokes that I never realized how much he enjoyed our friendship. And when I sent him my writing, he saw so much in it.

This friend has never known me as anything but a healthy, creative, energetic person. Now that he knows I am ill, he still interprets even this through the eyes of someone who still perceives the whole person that I am. He reminds me of who I still am.

This is a serendipitous gift.

WHERE DO I START?

2009-03-19T23:28:00.000-07:00

It has been a long time since I've been blogging. I seem to recall that it was something between sledding and toboganning == slogging -- tobledding -- oh yes, blogging. Sliding through life, semi-out-of-control, hoping to feel the wind and not the trees, climbing back up the hill, only to try again. What do I see? What do I know? What have I gained? What do I know?