Gutter Vista - Revisited

Sisterhood and Writers Block

2011-03-07T18:10:00.017-05:00

I recently enjoyed reading a biography of Flannery O'Connor by Brad Gooch. I am not a regular reader of biographies but once in a while I will find one that really holds my attention. I don't know if it's the good writing, extensive research, a passionate connection between author and subject or all of the above.

But Brad Gooch managed to make me feel a part of O'Connors life. I enjoyed the view from the sidelines, a silent cat sitting under the table and happily following Flannery throughout her life. When the book was over and O'Connor was dead I felt I'd lost a sister. I became eager to read all of her works which I am now in the process of doing. I have read nearly all of her short stories and one of her novels (she only wrote two).

There's nothing I love more than happening on new authors and setting about devouring everything they wrote. Flannery O'Connor wrote somewhere around thirty short stories and as I mentioned two novels. I am about two thirds of the way through her work. I also hope to read her letters. Then like a sated cat, I can sit back, purr and digest.

I have been blocked for over two years. My sister's recent advice when I complained of not having anything to write about was "Just fucking write - every day". Writers like Flannery O'Connor just wrote every day. For O'Connor it was after breakfast for two hours, she admits that's usually all the energy she had. .

My sister (the foul mouthed one) offered a beautiful metaphor for writers block. She equated it with an outside faucet. (She lives up north where it snows and freezes.) She said you just have to turn it on and let it sputter out all of the rust and nastiness before you get to the cool, clear fresh spring water.

By the way Celia is anything but foul mouthed. She is very well educated, her area of expertise being British literature. She is a gifted speaker and a beautiful writer. But, she is Irish and we Irish can't help ourselves. When we need to make a point our language can become colourful.

The daily commitment of two hours a day worked very well for Flannery O'Connor. She wrote some of the best southern prose of her day or any day. Her characters are so vivid that one can't decide if they like, hate or love them. She really captures the poverty and ignorance of the rural South.

She was a devout catholic. Yet her stories are full of protestant style Jesus fanatics. The hypocrisy of religion is well sketched and her tales are often dark even black and yet sometimes I can't help laughing. Her catholicism must have made her an outsider in much of the protestant South.

I too was a devout catholic for most of my life. I am currently devoutly unchurched.

Like O'Connor I suffer constant pain. I have periods where I feel well and then I have flare-ups. I doubt I can suffer with anywhere near the dignity of Flannery O'Connor. So I shall slog through the bad stretches (I'm having one now) and enjoy the good times when I am riding and being physically active.

So as I navigate the stagnant waters of writer's block, I have the audacity to glean inspiration from this great writer and to feel some sisterhood in our autoimmune purgatory.

And I'll wait for the muddy waters to become clear.

Back in the Saddle

2011-02-22T21:49:00.023-05:00

It has been nearly two years since I have posted anything to this blog. I just looked back at my drafts from two years ago. Reading my words helped assuage some of my guilt about not writing. These drafts were my attempts, at the time, to explain what was going on with me, specifically my brain.

The drafts had titles like "If I only had a brain", "What a Long Strange Trip it's Been" and "Brain Death". They listed symptoms and diagnostic details such as; "just emerging from a fog", "last lucid memory is of waking up in a ditch", several hypo densities, white matter. The list goes on. As I read these accounts I feel tender self pity.

Two years ago I was becoming very ill. My rheumatoid arthritis was raging and my rheumatologist decided on a new medication called Enbrel. One of the effects of the drug is that it dampens an over active immune system. (RA is the result of an over active immune system.) The Enbrel caused a drop in my immune function, a drop which was a serious blow to my already compromised immune system. (It seems a contradiction that my immune system is compromised yet I suffer with RA.)

This drop in my immune function resulted in a serious untreatable brain infection. Several CT scans and MRI's showed white matter lesions. Clinically, on the good days, I was very confused and forgetful. On the bad days I was delusional and agitated . I was hallucinating and exhibiting symptoms of schizophrenia. I was hospitalized several times with psychotic episodes. Once for an entire month. I also developed a seizure disorder.

So, the last two years have been interesting. Fortunately I don't remember a lot of it. I remember slogging through days of half existence. I remember the sense of isolation that comes with mental compromise. But the last several months have been better - a slow steady improvement.

Now, present day, I feel great. I am back in the saddle (literally) - riding two days a week. Meds are managing my seizures and psychotic symptoms. I am driving again. I am enjoying a spirit of gratitude that comes from long suffering.

I am grateful but also frustrated. I haven't written a word let alone a line of poetry in the past two years. I hope the part of my brain that writes returns. The only thing I can think of is to go through the motions of writing. So, I am resurrecting the blog as a means to an end. An end that I hope will take the form of creativity. So, please bear with me.

Crisis or Faith?

2009-04-12T21:20:00.014-04:00

I went to church with my mother today for Easter Services. I love my Mom's congregation they seem to me to be what all churches should be. Inclusive, diverse, progressive, devoted to social justice and ministry. Also a hell of a lot of fun. The Spirit is there in the laughter, love, eating and joyful celebrating.

It's a tiny church. It's in its original building which is very old. The church was founded around the time of slavery here in the south. Recently freed slaves and other people couldn't afford pew fees were welcomed and the church has maintained a spirit of outreach and inclusiveness ever since that founding. When I first moved to Charleston, twenty years ago, and while working in the area of HIV/AIDS, I attended many funerals, these funeral were not welcome every where. The AIDS funerals were not popular. Beautiful funerals were almost exclusively held in this tiny church with its huge heart.

The previous paragraphs are not an attempt to raise funds. I am simply attempting to demonstrate that I am not un-churched, most of my life I have been "churched" as they say. Often, people dismiss discussion and criticism about religion as the complaint of one who dislikes God, religion or has been wounded in some way and is carrying the proverbial shoulder chip.

While I wouldn't describe myself as churchgoing at this time of my life, I believe I arrived where I am as a result of many positive forces; I have an amazing mother who loves God and always encouraged discussion about anything and everything without intellectual, spiritual or other constraints.

I am a cradle catholic. About twenty years ago, I started practicing a form of meditation which led me through an exciting evolution which ultimately resulted in me leaving the church. The meditation was an ancient practice and was taught to me by my spiritual director, a Catholic Sister. It has been a slow evolution and I didn't realize the profound and wonderful changes that are enriching me.

I started noticing some changes when I recognized the divine in unexpected ways. I realized I was worshipping in the woods, on the backs of horses, while reading or writing a poem. I am often nourished by the gospels and many other sacred texts. At today's service (Episcopalian) the Rector mentioned the many different accounts of Christ's resurrection. In my head I reflected on this year's gospel when the witnesses clung to the risen Lord. I also remember another account where Jesus says "Do not cling to me for I have not yet been to the Father"

Later that day I reflected on all the inconsistencies and variations of accounts in the gospels. It seems the bible has many spin off stories. Who wrote what? When? Why? Who wrote Revelations? Was it "John the Divine" or "John, the disciple whom Jesus loved?" How many more gospels might there be other than the familiar synoptics. What about the Gnostic Gospels and many other recent interests.

None of these bible study issues has ever interested me very much. I've never been too clear on the details nor have I been interested in them. One of my early recollections as regards musing over God or Gods, Saints and sinner's was when I was very young, not quite seven. I was being prepared for first holy communion. I believe I was tasting the bitter flavor of theology for the first time. I remember sitting in my bedroom looking up at the white plastic crucifix (it was the sixties) and in particular I was looking at Jesus smiling beatifically. I mentioned to Jesus in that casual way children possess when talking to Gods (I expect it's a refreshing way to be addressed when one is a God.) I simply said, "Hey, I don't understand you or what you do or did or why you did it. But if it's ok with you, Jesus, I'm just going to deal directly with your Dad."

When people start discussing God or worse yet arguing about who/what/how God is, I just want to leave the room. I'm not too clear on the details but that doesn't bother me. The details don't interest me. I'd rather assume that "Holy Whatever" is way beyond the capacity of my tiny mind. It is just TOO BIG for my standard issue brain.

I sometimes notice during these theological and sometimes nonsensical discussions that people can get very passionate in defending God or the beliefs they cling too. One thing I do feel rather sure of is "God" doesn't need me standing in the shadows of some dark church alley cracking my knuckles, pulling back my trenchcoat/vestment to show off my piece, ready to defend him/her. I do not measure my faith by the passion with which I defend it. Does this make me a bad Christian? If it does, should I care?

I love the great "divine" with all of my heart and soul. My love is a blind love. My mind only gets in the way. I think this love, the most important of my life, would be sullied by dissection and detail. Maybe that's one of the reasons I have a natural repulsion to theology. There are other things about theology that leave me cold, to me it's been what educated and powerful men often use to lord over the poor and control the masses. I think that as a six year old saying "I don't understand" I was exhibiting the early stages of a healthy aversion to theology.

To me discussing theology in the presence of the divine seems akin to pontificating with your limited knowledge of music theory as Ludwig Van Beethoven plays a romantic sonata, written for you to express his love. Imagine also, you sit with your girlfriends giggling and gossiping while this incredible, beautiful thing is taking place. I suspect that a younger Beethoven might not have fallen so hard, before losing his hearing. While the eyes may be the windows to the soul, the ears are certainly portals for idle gossip.

I don't think I could be present to God, ultimate Light and Love while pondering how many angels can fit on the head of a pin? I cannot be present to god, love, light while pre-occupied with wowing my colleagues or planning a dissertation. I love to read and I'm intellectually curious. I just hope I never confuse knowledge with faith. Pure light, God, immortal love, I hope these exist but I cannot find them with my mind. My heart and soul will have to do. I believe these are to doors to the Divine.

Coming Home in the Evening

2009-04-02T23:18:00.005-04:00

Every evening the same

fever and bone deep weariness

accompany me home.

Once home my collie

and nature succeed

in luring me out

Tonight in the murky woods

there's a wet, warm fog

wrapping us in mute mist

Do you hear the fog I whisper,

the dog tilts her head but

offers no reply

The fog pulses

reminiscent of some benign

and distant delirium

Do you feel that I ask the air,

and with a grin answer to the dog

The fog has throbbed away my pain.

Home in bed I do not sleep,

I sit alone, smiling

into the darkness.

Never Look at the Road Kill

2009-03-19T23:33:00.013-04:00

Maintaining ones mental health is every bit as important, if not more so, than one's physical well being. By mental health I have depression in mind (no pun intended). It's always amazing to me when I observe myself as I am going towards, staving off or emerging from a serious depression.

I have struggled with depression over the last 20 years. Of course, in the beginning, I had no idea that I was depressed until I found myself in the hospital being watched 24/7. My first depression crept up on me, I was tired, disinterested and felt progressively worse, everything just seemed too difficult and the next thing I knew I was suicidal.

After experiencing depression one learns what to avoid and what to do to keep the symptoms at bay. One also learns that sometimes medication is needed to win the battle. I attribute my survival to experience, good professional advice, the proper meds and hard work. I can usually tell now when I'm being hounded by that "black dog" before he can get his teeth in.

A few weeks ago I was going through a change in medications that involved nasty pain, more than I should have suffered. The pain became severe and I could not get out to ride and I had a neighbour walking my dog. Time out of doors is an essential ingredient in my anti-depression routine. Then my cat, my littlest sweetest pet was diagnosed with renal failure. During this time of physical and emotional suffering, accessing useful health care and support was becoming problematic. I have many doctors and support people but some of my primary health care providers weren't even available, let alone helpful in any way.

I found myself getting weepy. But the piece of the puzzle that solved it for me was the road kill. I adore animals. I can't bear to see an animal suffering; furry, scaley, slimey or otherwise. Years ago I made a promise to myself. "I will not look at the roadkill". If I see it up ahead I don't look, I am sorry for the creature but I have to keep driving and let it go.

I have to let it go, when I find myself looking at road kill, I am comiting, a telling transgression. I am indulging the dark side. After the roadkill, the floodgates open and I find myself crying for all the pets in my life that have died or will die. I move on then to my father who died five years ago and from there it just spirals down out of control. At these times, all of life is death, pain and misery, blah blah blah. When it has been established that the world is an intolerable barren wasteland, I turn inward. My life is awful, I will always be in pain, I will always be sick, I am lonely and I will always be lonely, wah wah wah.

I think the road kill is a metaphor for the whole deal. When I look up ahead and I say "what a shame or that's too bad" but I carry on, life is ok. But when I look at the road kill it's no longer a strange possum of little circumstance, it's a little black and white cat. I had a black and white cat growing up. So now, I'm on to the family of the present cat, wondering where their little pet has gone. Some little girl crying at some dinner table. I wonder about the little cat's last moment. Indulgent wallowing. I can't afford to indulge the dark side.

The rules are simple. Obeying them is sometimes difficult. Usually when I look down my metaphorical road and I identify myself as roadkill. I can give in, straining my self to see the sorry state of me up the road or I can look at my behaviour and realize that I am in the early stages, approaching the wallow. Or I can look inwards to my sense of self and reality, continue to breath and go on. Depression doesn't go away quickly or easily but if it's mending rather than festering that's something.

It has taken me a long time and many violent altercations with the black dog to learn these simple things. I don't forget them too often because I know where that leads. I am also highly motivated because nothing I've ever encountered hurts more than depression. So as I drive down the road, I tell myself "eyes up, watch the road and never, ever look at the road kill."

Coming or Going?

2009-03-12T23:45:00.013-04:00

You know that disorienting feeling when you are sitting on a train and it starts to move, then you realize that the other train has left the station and you haven't moved at all? I experienced a familiar sensation today. It effects me frequently but I've never given it the reflection it deserves.

Whether I lived in the Northeast of the US or in the constant dark rain of the West of Ireland, I always knew the season. Summer hot. Autumn lovely. Winter cold. Spring lovely. I have lived in Charleston, S.C. for many years. By far a more pleasant climate than NY or Connemara.

However, in Charleston, I often experience what I call seasonal disorientation. It usually occurs when I am out of doors, walking my dog or riding. Today I had a severe case of this particular confusion. It was a cool and lovely day. It was pleasantly windy and leaves were flying everywhere. The horse was snorting, we were both quite happy, an exquisite New York autumn day.

In reality it was an exquisite Charleston spring day. Here in the South, we have (or had) an abundance of wonderful trees called Live Oaks. Called so because they are green year round. They shed their leaves twice a year. They have two autumns and two springs. One knows if it's spring only if one pays attention. Still one may puzzle are these the summer leaves coming or the autumn leaves coming? Two autumns, two springs? No, well, yes if your measure of autumn is falling leaves and spring new leaves. Fortunately, to narrow it down one has other indicators, all stunning; the azaleas in colorful bloom, many trees budding forth with tiny spring - green promises and more bird song than bad teeth at Wimbledon. All proclaim, a happy corroboration that yes, it is spring!

In addition to the autumnal flow of leaves, the crispy crunchy spring - fall. There is another strange symptom. In northern climes we dread winter, the unbearable cold, snow, salt on the roads, never ending grey skies and dirty sludge. In Charleston we dread summer. The unbearable heat, insects, hurricanes, deadly snakes, alligators and Spoletto. So some of us who suffer depression may find they have to fight the good fight and then fight it again.

But the South makes it up to us. Her marshes turn into lush waving eco-systems, a color all their own. The sultry evenings, the smells of more varieties of flowers than all the bagels in New York.

This morning my dog and I walked by a gaggle of Canadian Geese. They are so astonishing. I forget how big and clean they are. Growing up in New York they were often permanent residents. They somehow looked a bit dirty or shabby. Today's geese were glorious, clean and all business, miles to go... before it's summer well, hmm, that is if I am able to convince myself that they are heading north, then I will rejoice and welcome spring in all her confusing glory. Did I say spring? Wait, summer or winter? Rejoice or dread? Coming or going?

Ah feck it, it's a beautiful day.

O God! Obama! Slap America. HARD!

2009-03-06T20:20:00.012-05:00

I have had it. I have said this many times over. And every time, I mean it. Survival is brutal. I say "this is it", "I can't take it", blah blah blah. The tragedy of living is that you are here today and here tomorrow. I have been exhausted and in pain for a long time. Decades.

Four weeks ago I went off most of my RA (Rheumatoid Arthritis) meds and started on Enbrel, another RA drug. I also have other causes of pain, sometimes bearable and sometimes, not so much. So for me the pain rodeo is in town. I hate rodeo's and the pain rodeo is my least favourite.

I have many illnesses and they all involve pain of different intensities and frequencies. I have many physicians who specialize in riding a buck, lassoing a horse, catching and/or riding a bull. I don't know much about rodeo's but I know enough to detest them. Horses, bulls and humans don't need to inflict or endure cruelty to mesmerize or inspire. That's what CSPAN is for.

I often feel that I have a calf roper trying to lasso me and a lasso expert trying to ride me with my bucking strap way too tight. Finally, over the course of the last week or two I found myself doing the bucking and kicking, wanting to get some help and if necessary, maybe even draw a little blood.

But, I don't think anger accomplishes much except perhaps the motivation and energy to write. So, I took action, invested a great deal of time, crafting letters, making copies of old medical records, new records and accounts of medications. My pain level continued to increase as I sat surrounded by inconsistent records.

It's funny, when you're a well person you think that doctors are quite organized. They look at your chart and remember that you had vaginal yeast three years ago. You blush even as you admire the organizational skills.

When your chart is thicker than the Manhattan phone book and you've had more surgeries, cancers, fractures, human immunodeficiency viruses, full blown AIDS, joint replacements and let's not forget major depressions - any super hero may well feel they're competing in the wrong arena. But unfortunately many doctors out there think they understand everything, all your symptoms and here's the worst -- how you feel.

So, struggling to make sense and trying to organize the current cluster fuck of pain, I spent last week not being heard at the pain clinic, not being heard by other physicians even after faxing, and emailing, recapping and pleading. I know many physicians are over loaded and some of them are good. But they chose this lucrative career and sometimes greed influences decisions about patient loads. I did not choose a life of illness and pain. I did choose to take responsibility for my health but I can't do it without medicine.

I met my primary doctor in the hospital lobby today so he could give me something if I needed it over the weekend, because another doctor totally dropped the ball, prescribing pain killers that might provide relief for a ingrown toenail on a petite flea but with enough acetaminophen to burst several Irish livers.

I went to the pharmacy and it was crowded so the pharmacist said "ring in 20 minutes and I can give you a price". I did and she was apologetic when she said there was no way they could fill the script because there was no name or date and it's a felony to interfere. Also, had the script been written correctly, it would require pre-authorization which could take up to a week.

So, someone, Please! SLAP!! America hard right in the face and kick me across the ocean. There I may again take up residence in a civilized country where the ill are taken care of, well.

Yes, yes no country has perfect health care. "Ah sure, me little auld auntie had to wait for months to have her bunion cut. God love her." I have heard the stories. Truth is the dear auld auntie would never pass the financial triage in this country.

I lived in Europe for many years, no financial triage and had excellent, timely care. Never had to write letters or exhaust myself asking "Is anyone here?I am unwell, I am in pain." I would go back tomorrow but for one major shortcoming, the love and support of family are here in the useless USA.

The Best in Us

2009-03-01T17:11:00.013-05:00

Matthew, my nephew, has always embodied the best in all of us.

I remember standing in the common area of my college suite, back when phones were still attached to walls. I remember my mother saying, "You're an aunt, your sister had a little boy." (This was also back in the days where the sex wasn't known or revealed until the birth.) "Yes, yes, Celia is fine, just tired. You can call her tomorrow". I asked for his name. Matthew.

I walked up to the Main Street of the perfect college town, alone. I entered the picturesque little church where I uttered a prayer of thanks, a request for his protection and my promise of love. I didn't know it at the time but it was the first nearly selfless, adult prayer of my life.

Matthew has always embodied what is best in all of us. Matt has never disappointed me. He has a limitless generosity of spirit. He sees the best in everyone and everything. He has a capacity to love with a passion and pureness that some call pathological. His love of God has often been questioned and even criticized.

Matt loves and admires all the men in the family but he went his own road. His creative talents were gifts which he studied, utilized and worked tirelessly to improve. However he also made the decision to add to his creative resume. He embarked on study, seeking a degree that would provide him, his new wife and their future with some security.

I visited with Matt and his wife, Amber, recently. She also has a huge capacity to love and Amber has taught us a valuable lesson. Amber sees and loves Matt as a man and her husband. It is her love that has helped us to fully respect and honor Matthew as an adult.

My recent visit was because Matt was turning 30 and Amber was throwing a birthday party for him. Early in the evening Matt proudly told me that he and Amber were expecting a baby. I found myself uttering a prayer in my heart similar to the one I had prayed for Matthew 30 years ago.

I cannot wait to be a grand aunt and to watch this new life find it's way in the world. The day after the party I sat at the tired old piano at my sisters house. I remembered all the time spent tickling the old cracked ivories and I reflected on the happy hours passed there .

I had a glimpse of sitting there with my grand nephew and I heard him complain to his granny "Can't we get a new piano Grandma?" and before my sister could reply, I heard Matthew gently reply to his son, "No."

And of course being the offspring of the best in us, a simple "no" would never suffice. Matthew of course would not expect that is should. I lost myself in the pleasant fantasy of seeing my "little Matthew" patiently and kindly explaining to his son, the long and loving relationship that the old piano has shared with our family.

And I'm sure the new young man will love all the men in the family. I am also sure that he will follow his heart and blaze his own trail. I hope one day that he too will have a partner who loves him and will teach us all to respect him as a man and as an adult.

I sure am glad that I am old and my trails are blazed.

Dolphins

2009-02-23T00:15:00.005-05:00

There's something in their way of going that fills me with longing. I want to be one. To share their muscle meets fat rubbery form. To be safely ensconced in their world of weightless play.

The motion is euphoric, winter or summer the cresting and then submersion. I fantasize about a life without pain. My tired soul smiles gratitude when I see them on a pain-less day or I am moved to tears when I see them dancing, while I ache with envy and illness.

They live in a universe apart and yet they are my neighbors, I see them often. I wonder if they are capable of envy. I can't imagine that we are the objects of it. They just seem to be doing a better job at life below and above . I envy them, their playful grace and ready smile.

I did not realize until recently that in addition to envy, I emulate them. I have always feared pain and illness, from a very young age I became terrified that illness and death could stroll unawares into a young healthy life.

I d0 not fear pain and illness so much as I fear missing out on the fun, the joy, the mixed blessing of life. I do not give in to pain and illness but there's little bravery involved. I have to be really suffering and terribly ill to stay in bed. Staying in bed requires bravery, the bravery to relinquish control and face the loneliness and boredom of ill health.

Maybe I am dolphin-esque. I see their smiling eyes and joyful countenance but what do they see in return? They see me, smiling in the sunlight or pensive on a pale grey day. Perhaps they envy me or perhaps they think I'm a big faker.

I am a faker. Maybe they are fakers too.

I still envy them. And I always will.

Blog Block

2009-02-15T22:43:00.007-05:00

I am still living. I have been suffering with post holiday apathy, too much pain and now my cat is dying. All the essential ingredients for Blog Block.

I have thought of several ideas for a post but they were not worthy of your time, dear reader. (Is there really more than one of you?)

I must admit I emerged from post holiday apathy long enough to rejoice in the inauguration of the forty forth president of the United States. He's smart, direct, well spoken and he's NOT a Republican. Yes, for me the real rejoicing came after Christmas this year.

Too much pain? When I say that, it's too much. I am currently off my meds for Rheumatoid Arthritis. I was on four meds. They were making me fat, bald and cranky and weren't controlling the pain. If I have to be a fat, bald bitch, I want some pain relief in the mix.

I started Enbrel last week, it's a once a week sub cutaneous injection. It can take a while to work so for now, I'm in too much pain.

My cat dying, I'm not ready to write about that. I just found out Friday. I am hanging on to Denial, my favorite not dealing, way of dealing. Hey it's worked for me for a quarter of a century. It's the least I can do for my little baby.

So, I am sorry for the hiatus. I hope to be more regular for the rest of the year. I will check in once a week even if it's as banal as this depressing post. Happy New Year.

Bye bye W.

A breeze

2008-12-08T23:46:00.011-05:00

a blizzard of leaves

rustling voice of the trees

and inexplicable glee

(I have forgiven the woods.)

Betrayal

2008-12-02T20:29:00.021-05:00

(NOTE: Last week half of a dead tree fell on my head.)

The screeching pain in my head

and the hurt feelings subside,

A large tender bump recedes

and relief - a scan provides,

I don't understand. What did I do?I

have devoted my self to you.

I rush to be with you each day,

to bask in your beauty, to think, to pray.

It was an accident, I know,

you didn't mean it, yes, I see

that I don't know you

and you don't know me.

So I will return with

a surgeon - and she

will prune and will preen

and then you shall be

Incapable of betraying me.

Thanks for Everything

2008-11-26T12:01:00.008-05:00

Gratitude is good medicine and it's an excellent practice. There is wisdom in the way autumnal and winter holidays fall. We are in the suicide season of dark shortening days and long cold nights. Hunger (of all sorts), loneliness, melancholic nostalgia all thrive at this time of the year. Past traumas, disappointments and deaths are highlighted, especially if they occurred during this suicidal season.

To reflect then, on gratitude, on what we have, what we may have been given and what we take for granted, is a noble distraction. We all criticize the business aspects and commercialism of this season. However, in a small degree the activity is therapeutic. I'm not talking about standing in line for four hours for some useless electronic gadget that will prove to you peers, for one fleeting second that you are a success.

I'm talking about lesser things. I am cleaning my oven today. Usually I just move to a new house when an oven gets dirty. I'm grateful that I love where I live enough to clean my oven. I have a beautiful dead bird in my refrigerator and I want to roast her in a clean oven. Tomorrow I will rise early, peel, chop, stuff and enjoy the smell of the roasting turkey. I will be surrounded by people I love, that's enough to be grateful for forever, the people who walk through all the seasons of our lives.

The activity of the holidays only provide respite for a day or so. And I have many things to be grateful for every moment of my life. I have learned through the process of suffering and a fledgling understanding of spirituality (based in part on suffering), to be grateful for it all.

I am grateful for the miracle of my body. Micro-miracles like a bone in my hand or a joint in my thumb. Extraordinary engineering. I am grateful for the nasty disease which I have been diagnosed with, Rheumatoid Arthritis, which is slowly destroying the joints in my hands. RA brought my attention to these miraculous tools.

I am grateful for the tiniest little flower I saw this morning on a bush. It's stunning effort to reproduce in the face of brutal cold and approaching winter.

I am grateful for all of my illnesses, traumas and losses. They made me so miserable that I had to look inside for joy. The joy that enables me to feel wonder and delight in the simplest external occasions of beauty and goodness, things that I used to hurry past in my quest for more and better.

Happiness and goodness can not exist without despair and loss. I am grateful for that dynamic and so many other things that I will never understand. I am thankful for my ignorance as it helps me to achieve a level of humility and detachment . I do not recommend deliberate ignorance or assuming a lack of interest. I refer to the acknowledgment that there are so many things I can never understand. I must learn to let go and move on.

I hope that I can live in a posture of gratitude for everything. I know that it's impossible to accomplish this but I hope I keep returning to the effort. For me this has been an essential piece of the life puzzle. This is the piece that leads me to happiness and genuine gratitude. So as we Americans celebrate with too much food, too much football and wonderful, general merriment, I say thanks. Thanks for everything.

Freaked Out

2008-11-17T21:19:00.010-05:00

This kitty looks like I feel these days. (Sorry photo of freaked out kitty has been removed, please use your imagination, a terrified kitty being carried from a burning building by a huge fireman.)The state of South Carolina in her infinite ignorance has made some changes to Medicaid benefits. They used to cover most of my prescription medications. No small feat as I rely on over 20 prescriptions a month.

I was informed recently that they would only cover six prescriptions a month with four "emergency overrides". Ten, ten prescriptions a month. So, if this be the case, I must choose which disease I prefer to treat. Hmmm, lovely. Let's see, would I like to continue to treat my Rheumatoid Arthritis or will I treat the HIV?

I can see no point in treating HIV if I have to live with the pain of RA. I can see no point in treating RA if I am spiralling into a pit of "full blown AIDS". Been there, done that, several times. Not again, thank you. Maybe I will simply fill up my basket as follows:

Anti depressants x1
Anti anxiety meds x 1
Pain Medications x4 (all the fun ones)

Well, that about does it. Not a pretty picture no matter which way I go. But of course, being a "long term survivor", I'll make it work. I will wear myself out on the phone with social workers, pharmacies, drug manufacturers. All of the people I speak with will probably be younger than my virus. They certainly will not have worked in their area for as long as I've lived with my illness.

It really does get old. Sometimes, I hate this fuc#*&% country! I lived abroad for over six years and never even paid for an aspirin. I have friends in the UK and Ireland that are employed as social workers or in various areas medicine. In their own words, "they just can't wrap their heads around this kind of situation".

Are we EVER going to reform health care? There's a democrat on deck for the white house and the government after next January will certainly appear more concerned with this and other questions that the republicans virtually ignored. But the mess this country is in is so critical in many areas and will make heavy demands on the new administration. I am delighted with the way the election turned out. But I will wait to see if my life improves as a person living with long term illness.

The poor screeching kitty in the photo would probably rather not be in the rescuing arms of the fire fighter but the alternative is even more dire. I wonder if I have the energy to hit the street screeching (again) or will I retreat into the private dignity of my personal crumbling building.

Footfall

2008-11-15T23:09:00.002-05:00

Footfall of dead leaves

follows me

I try to outrun the

eager leaves, keep up,

ardent, I must

outrun them, keep

moving, moving, keep...

stop

serene autumn air,

immaculate

silence

I just can't do it.

2008-11-12T20:56:00.005-05:00

I thought that having a blog would make me write more regularly. The problem is, as a writer I'm picky and insecure. I read, re-read, edit, re-edit and sometimes actually post something.

Also my life has gotten very busy. I have recently met someone and I am in love. Her name is Daniella and she's an eight year old, grey mare. I am spending four days a week at the barn or in the bath when I get home, filthy, exhausted and as happy as I ever get. And I can get pretty damn happy.

So, I am going to continue to post on my blog. I am not going to subject myself to the gruelling editing, fretting stuff. You, poor reader, will just have to deal with it. The more I write the better for me and it's my blog, so there.

I had this idea that my blog would not be about my health. Well, excuse me but fuck that. With all my diseases, constant pain and hassles seeking health care in this great nation, my life is all about my health.

This horse is about my health, she's fat and lazy and making me stronger and so happy. This blog is about my health. I don't fancy dementia and having to at least slightly organize some thoughts once or twice a week to post something, should do me good. So, here's another shitty little poem.

Whew. Now, I feel better. Hope you're well too. Chat soon.

Arabian Proverb

2008-11-06T13:55:00.001-05:00

"The wind of heaven is that which blows

between a horses ears"

Love at First Bite

2008-10-24T11:49:00.015-04:00

I apologize, dear readers (all three of you), that I haven't written in a while. I went away with my brother, mother and sister. We were celebrating Mom's birthday and drove down to Savannah. An excellent time was had by all, it was wonderful to be together.

Upon my return I hit the ground energetically limping. That's as close to running as I get. First I had a photo shoot posing for a calendar called "the naked truth". I spent some very entertaining time posing naked on a beautiful horse. The horse photographed well.

The calendar is all very tasteful, I wasn't completely naked, I was draped in the Irish flag. I'm March, St. Patrick's day. I encourage you to visit the website and have a look. The 2009 should be out soon, and might make interesting holiday gifts. It's for a good cause --HIV/AIDS. I am just an old naked equestrian and I'm sure you'll get better information on the web page.

www.nakedtruthsc.com.

Something strange has been happening. I seem to be acquiring a life, a rather busy one at that. I am my own worst enemy, whenever the pain recedes, even slightly, I sign up for everything that interests me. I am interested in a great many things. I hope that I am learning to pace myself. I am in bed now and intend to devote today to rest and writing.

I have volunteered at a therapeutic riding center for a few years. I love the work, the people who work there, the horses and the clients. It's an amazing program. I am a "leader" which simply means I lead the horses while two other volunteers "side-walk" to reassure the rider and assure their safety. A few weeks ago I met a grey mare. She was beautiful, big and sturdy. She looked like the perfect Irish Hunter. She was also cranky and made an attempt to bite me and kick me. I didn't take her attempts too personally or seriously. In fact, I fell in love at once.

She really is a sweet horse. She's eight years old and as slow and lazy as most horses four times her age. Slow is OK in our riding program, we want safe horses. However, leading her is like dragging a 1200 lb. sack of potatoes for an hour.

I felt that as a young mare she should exhibit more joie de vivre. I spoke with her owner, a lovely lady who is recovering from a serious injury and recently had an absolutely beautiful baby. I started riding the mare this week. I'm a bit sore but it's a good, riding sore. When I got off her yesterday my spirits were elevated in a way that only riding can accomplish.

As Winston Churchill once said "The outside of a horse is good for the inside of a man". Ever since I was a little girl the one thing that brought me more joy than any other was horses. Feeding them, grooming them and most of all, riding them.

I hope I can teach this young mare a few things. I'm certain her reluctance to work can help me build strength and endurance. It's been a long time since I had a horse to smother and fuss over. It's about time.

Another Poem

2008-10-16T10:57:00.013-04:00

This poem reflects some of the discussion in my last post, "Oh My Gawd". I apologize for the length but I tried it out, and (technically) it still qualifies as a Post It Poem. It was written on one of those really big notes (you know, the ones with the lines). Oh, and I wrote really tiny.

A Hymn in Green

I enter at dusk
A cathedral of Oaks,
Pillars of Pine
Inspiring silent awe.

A living cathedral where
Trees as tutors tell truths,
Their branches and roots
expanding, whispering.

Sacred vines are blessed
to live among them,
Contemplating truth
Arms folded in prayer.

A cacophony of chanting,
The Moon arrives to
a choir of crickets
An owl conducts.

There are no priests
no clergy here,
all are equally sanctified
all singing an eternal

Hymn in Green.

Oh my Gawd!

2008-10-14T13:22:00.027-04:00

I started reading "Eat, Pray, Love" by Elizabeth Gilbert last night. The story contains a great deal of discussion about God, meditation and spirituality. She relates an intense "conversion" experience on her bathroom floor. I identified deeply with her account. When I first faced serious illness and my own mortality, I was hopeless, terrified and desperate. I began an exploration of and search for God. I thought I was dying and God seemed like the only option. You know the old adage; "There are no atheists in foxholes".

I was born a Catholic. I possessed a reasonable though unexamined faith. I abhor the ideology, politics and practices of the Catholic church today and throughout history. I am no longer Catholic.

But as much as I disdain the institution, I am grateful for the spirituality that I developed while growing up Catholic. My mother played a huge part in my spiritual development. It was her loving interpretations of the sacraments and scripture that made God real to me and the Catholic faith bearable. Her example of open-mindedness and love was powerful.

Ultimately, it was prayer that moved me from Mass to mysticism. It was a Catholic Spiritual Director and dear friend who taught me a method of meditation that leads to detachment and contemplation. Not contemplation as a cognitive process of thought or reflection, but as a means of resting in the non-thinking, non-emotional, pure presence of God.

Over the years I have let go of words, thoughts and even feelings in my meditation. I simply remain faithful to the practice. Meditation led to my detachment from many things including liturgy, Eucharist and most of the things that define religion. Nearly 20 years of this prayer practice has made concepts of and intellectual explanations for "God" irrelevant to me. The word "God" for me is charged, and a good bit of that charge is negative. I live in the deep South, the "Bible Belt".

I've met some very unpleasant, cruel Christians in my life. They have spit in my face when I marched for gay rights, they have turned their backs when a friend who died of AIDS needed a funeral and a burial. They harass young women acting on the most painful and difficult decision of a lifetime. They defend unspeakable hatred and brutal judgment in the name of God. These experiences have played a significant role in my discomfort with the word "God".

I don't like the word God. But it's a perfectly adequate word and most people are comfortable using it and that is good enough for me. I don't have a word, I just have this "place" without words or thoughts. A non-physical space where a silent presence gently overwhelms. I know my words are contradictory and inadequate but that's about as close as I can come to what "God" is to me. The Gnostic's "The Shadow of the Turning" or St. John of the Cross's "The Cloud of Unknowing" --these seem better to me. But ultimately all words fail.

So, I don't have a word or words for "God". As a writer, that's a problem. I considered inserting a smiley face as a substitute for the word "God" but I couldn't find one that possessed sufficient dignity. I shall for the purpose of writing simply use "god". I don't feel the need for more name or gender discussions here. So often our tiny visions of god get in the way of us loving god and each other.

This morning I found myself in the woods with my dog. We passed by an incredible spider web, It was perfectly symmetrical. My reaction to it was a prayer, a little indrawn breath of delight and gratitude. Then for some reason I started thinking about what I had read so far in Ms. Gilbert's book.

Her fervour and excitement at the beginning of the ultimate journey was beautiful. I reflected that the passion and intensity had gone out of my relationship with the divine. My faithfulness is always the same, I return to my prayer. Often the thought of meditating seems unattractive to me. The thrill is gone, I don't receive the same "buzz" that I experienced in the early days. But now, unlike before, I experience god in nature; trees, plants, the sky, the earth, the sea, the universe, all animals and humans, every cell, molecule, atom and smaller particles, you get the general idea - god is present in everything.

While enjoying Ms. Gilbert's account, I felt a nostalgic longing for the mysterious, intense sense of god which used to fill me and sustain me. I used to walk around in a haze of mystical ecstasy. Now I participate happily and peacefully in this world but I no longer experience the same intensity or frequency of "consolation" from god. I question myself, have I become bitter or jaded?

So today when I saw the perfect web, I experienced god, I felt happiness. Returning home, I grabbed my camera and walked for another while until I found the web again. I could not capture the light or the perfection of it, the sun had moved. Rather than being frustrated, I felt happy. I gained some insight into the change in my relationship with god. I may not feel like I used to but like the web, I can't go back or capture those times in words and pictures.

Now, when I receive a caress or some other "gift from god", that's it. I can't hang on to it, analyze it or possess it. That moment will have to do. And it does.

I hope I will continue to show up and meditate. The rest is out of my hands. Thank god.

(Sorry about the title, I couldn't help myself, I'm a New Yorker.)

Post It Poems

2008-10-09T17:53:00.003-04:00

As promised, every so often I hope to include a tiny poem, a haiku or just a few (hopefully) well chosen words of prose. I love to write poems but I usually find my poetry improves when I edit out 50-80%.

A fan of brevity, I hope this exercise in "Post It Poems" will improve my writing. Many of these little poems may resemble Haiku but the syllable count is in English. Also, they are not proper haiku, as they deal with a diversity of subjects which are not appropriate if one wants to be true to the form.

Today's "Post It Poem" complements the subject of my last post and my current situation, regarding health care in the United States.

It's not personal
Unbridled apathy funds
Freedom on its March

Getting to Know You

2008-10-09T13:52:00.000-04:00

Just this morning, as I walked around the woods, ponds and other natural beauty that I am privileged to enjoy, I reflected on how fortunate I was. I decided I would write about the birds (glorious and exotic down here in the South), the alligators and the deer. I resolved to wax poetic in an account of the joy associated with the dissipating summer heat.

When I returned home I needed to make a quick phone call before I started writing about the view from above, or at least the level view and the beauty around me. I called my mail-order medication guy. Every day I take about 40 pills. (I'm afraid the getting to know you phase of our blog life is about to enter warp drive. No coy courtship for us.)

My list of medications is long enough to impress Tolstoy. I print it out when I have an appointment. I attach this list to whatever annoying form I am being asked to complete. I have been seriously ill for nearly half of my life. I spend most of my time filling out annoying forms.

Here comes the fire hose...a quick medical history; in 1985 I became infected with HIV, in 2000, 2002 and 2004 I developed full blown AIDS. I am now back to being HIV positive. The drugs are working. The side effects are awful.

In 2000 I was diagnosed with lymphoma, stage 3B. Six months of nasty chemo but I'm still in remission. In 2004 I suffered with a bizarre and extremely painful bone disorder which landed me in a wheelchair and rendered me incapable of using my hands, arms, feet, etc. After three weeks at Mayo I returned home undiagnosed. Fortunately whatever it was is now "in remission". (I hung on to the wheelchair, just in case.) In 2005 I was diagnosed with thyroid cancer. In 2006 I was diagnosed with rheumatoid arthritis. I will spare you the numerous surgeries, joint replacements, drug reactions, etc.

Maybe at a later date, we can discuss the possibilities of re-incarnation and my former life as Joseph Stalin? Despite this litany of illness, I maintain a life saving sense of humour and I am usually happy and reasonably comfortable. But, today, I found myself in the gutter again. When I called my "medicine man" he explained that Medicaid would no longer pay for most of my medications. I have to "CHOOSE" six that I can't do without. Well, there are about 20 that I can't do without! I only get six. Oh, and I get four overrides. So a total of 10 prescriptions a month.

Talking about health is boring, I know. I hate to subject you to the details of the evil machine that is the South Carolina State Govt., but it's necessary for you to understand. Unless you live with long term illness in America, it's hard to imagine that one invests most of their time managing the illness. I don't mean managing as in eating well, pampering, massage, alternative treatments. I mean managing an uninterested, incompetent and cruel bureaucracy.

I realised after "choosing" meds that I would be forced to choose to treat the RA or the HIV. I have to choose ONE! I think I'd rather die with the HIV then live with the pain of RA left untreated. Although dying with AIDS (which I nearly did in 1995) was excruciatingly uncomfortable.

So, thanks for listening (reading). Take heart, don't take it all too seriously, I don't. I used to get quite panicked and dramatic about it all. Now I simply resolve to solve the problem and somehow I will. There are some amazing social workers in this country.

Back in the last century when I attended college, I used to study philosophy. I admired David Hume for many reasons. Most of all was his attitude, when his head was wrecked trying to solve some huge metaphysical dilemma, he walked away and played golf. Well, I don't play golf. But I am going to grab some apples and carrots and go play with some horses.

It's still a beautiful day and I am fortunate to be able to bounce back from the gutter (it gets easier with practice). This problem will still be here when I get back. Right now my dog needs a walk, the horses need treats and I need fresh air.

Don't mistake me for some Pollyanna living in denial, I'm just a seasoned citizen of this God forsaken country and this third world (not developing at all)state. This problem won't go away so I am going away from it. For now.

A Life with a View

2008-10-06T20:48:00.000-04:00

Why Gutter Vista? It's not nearly as depressing or deranged as it may sound. Gutter Vista is meaningful to me metaphorically as it relates to many experiences in and out of the gutter. I have had periods in my life when all I could feel was the dank slime on my face of the wet,vile gutter. This unhappy circumstance was accompanied by the distinct sensation of a foot applying firm pressure to the back of my head.

We all go through difficult periods. But, for many years of my life, the gutter was all there was. Every time something tragic in my life would dissipate or some wrong right itself, I would lift my grimy, hope-filled face to glimpse, anything, anything other than gutter. But, before I could adjust to the light, focus or in any other way, emerge from my sub-troll existence, the foot was back and often sporting some new spurs.

In recent years, my life has improved. I have long, uneventful periods of peace and happiness. I also have gutter days. I say days because it isn't a true gutter experience if it doesn't go on longer than we think we can bear.

When I do emerge, I find my gutter days are more productive and formative than any others. Comfort and ease are not memorable teachers. Misery and hopelessness, they are remarkable, talented and tenured teachers.

Were I to provide a litany of my misfortunes; time spent in the brilliant presence of misery and hopelessness, an accounting of my glory days in the gutter, I would bore myself, and worse, you. I don't want to do that.

I hope as my comedic/tragic life chugs along, you will come to understand my view from the gutter. There are worse views. Believe me.

Coming Soon

2008-10-03T09:49:00.000-04:00

I am an idiot when it comes to anything technical. Much of my time this past week has been spent hunched in front of the computer trying to make my photos go somewhere, anywhere, other than the little folders I so proudly set up. It was like finding a cure for Citamuehr Syndrome only to find that no such disease exists. Futile folders.

I next moved on to a new level of tech-torture. I purchased a router so I could have some freedom, especially when replying to emails. I pictured myself in bed, perched on many fluffy pillows, happily responding to my emails. Rotten router.

Things come in threes? Well I purchased Dragon, the latest version (I've lost count). It sits unopened, I am terrified.

So, now I am trying to figure out all of this new technology which will allow me to work more efficiently. But I am hungry and cannot put gas in my car. I've blown the wad on technology that tortures, even mocks me.

Soon, I will have it worked out and hope to begin posting a couple of times a week. I just couldn't leave a blank blog hanging out there. I know that I have no readers, yet, but if you happen by this little blog, give it another try in a week.