Archive for the ‘Bhakti’ Category

Dallas Obituary 2

2015-11-07

The following notice appeared in the Sunday Dallas Morning News on September 7, 2014:

Martha Elizabeth Ward (Nee Hudson)

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Martha Elizabeth Ward, author, poet, and bhakta, was born July 17, 1960, in Amarillo, Texas, and died Wednesday, August 20, 2014, in Gaithersburg, Maryland, of natural causes following a long illness.

She graduated from Amarillo High School in 1978 and was awarded a Bachelor of Science degree in Medical Records with honors from Southwest Texas University in San Marcos in 1982. She lived in the Dallas area for many years, working in positions such as Director of Medical Records, and medical records quality auditor for the State of Texas. She had two children, Jennifer and Michael.

Disabled by a botched operation in 1997 that left her with a chronic pain condition, she took up residence in the Shivayogi Ashram with her guru Professor Emeritus G. V. Desani, noted author and spiritual teacher, and Ray Ward, her husband-to-be and GVD’s personal editor. She managed the Professor’s aides, and learned about Theravada Buddhism, mindfulness exercises, and Bhakti yoga. She loved living in a literary household, her writing and music, and being able to spoil her children.

She died as she had hoped, in the arms of her loving husband, surrounded by friends, and the sounds of a baby’s laughter.

She is survived by her husband, Ray Randall Ward; the son whom she loved above all, Michael Lee Felton; her dear brother, Michael Eugene Hudson and his wife Kathy; their daughters, Channa Foster and her son Gideon Foster, her goddaughter Danielle, Callie, and Cate; her parents Clyde Milton Hudson, Mary LaVonne Riley Hudson; her estranged daughter Jennifer Elizabeth Felton-Woods-Lingner and her husband Ryan, and her four grandsons, Michael and Gabriel Woods, Asher and Grayson Lingner.

She was an organ donor, and her skin was donated for reconstructive surgeries. Her remains were cremated and will eventually be scattered at sea, according to her wishes. A memorial service will be scheduled sometime next year. Her full obituary will be published on her blog, iamdying.net, and posted on her Facebook page, facebook.com/elizabeth.hudsonward .

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In the Dead of Night

2014-09-06

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‘iss me.

What? (rolling over & kissing her neck)

I love you so much .

I love you too, dear.

I’m having so many memory lapses, it scares me.

You have a terrible disease.

I miss you so much.

I miss you too.

I’m afraid I’m going to die soon. That fear comes and goes. I don’t want to leave you alone.

You’ll be going to a better place, with our teacher. We were both there before we came here. I’ll join you there soon.

I hope so. I wish I was still pretty.

You are, dear. You’re beautiful. Remember the story of the Little Prince?

Yes.

Of all the flowers in the whole wide world, there was only one that was his, and his alone. And of all the flowers in the whole, wide world, you are the only one for me. The scent of the old rose is incomparable. It grows only on the older vines that have lived through the winter, not the new vines of spring.

Do you remember the picnics we used to have?

At night, naked, in bed?

I could still eat the food we used to put on the platters…

Well most of it, anyway.  The taste of the raisiny port, Blue Stilton , the cheeses, crackers, tiny meats, chocolates.  Some of it you’d take from my mouth into yours, like a baby bird. Especially the chocolates.

And the music.

Our menage-a-trois with Beethoven, or at least his visions of Heaven.

I can’t be close to you, like we used to.

We’ll have to work towards it. Save for a couch that unfolds into a bed. Then we can roll about, wrestle, like we did.

We have had such a hard life.

Yes, especially, emotionally. But we’ve also had more blessings than many. I’ve been granted the ability to make enough money for us to be together, in our own place, safe, shielded from the weather, hire people to help you with your writing.

I know.  I give thanks every day.

So do I.

I’m afreaid I’ll forget who you are.  I won’t know you.

That may happen. But it will always come back.

Are you sure?

That’s how the disease progresses. It comes and goes, your memory and awareness. I remember a story of a couple. He had the disease.  He was sleeping more than 20 hours a day. He hadn’t spoken for months or shown any sign of recognizing her. She was with him as he died.  At the very end, she told him that she loved him. He squeezed her hand as he used to. He was still there, knew her, loved her. Then he died. I will be there when you die. You don’t have to worry or make any effort. I will know that you are there, that you love me and that I love you. Then we will be together again after a little while.

(She squeezes his hand. He places her forearms on his and interlaces their fingers, squeezing back.)

I have to try to get another hour of sleep before I have to get up to go to work.

(She starts to snore, softly.)

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Land’s End

2014-09-06

A long dry spell between posts has come to an end.  Her spoor has turned from the stones to the sea.  She has returned to whence she came, and will walk these shores no more.  She swims free at last.

Adieu, my sweet!

We are transcribing her recordings and will post her poems and stories and thoughts here.

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Fresh spoor

2011-11-20

I follow as closely as I can the tracks of my silkee as she wends her way along the strand.  The call of the sea has been strong of late, as she is suffering most grievously here on the shore.

Shortly after the previous post, some nine months ago, she began to have painful spasms in her throat.  Soon she could not eat normal gluten-free food.  She had to go to a soft food diet.  I took her for an EGD.  A few days before the procedure, she began having a different kind of chest pain.  We told the anesthesiologist, and he demanded a cardiac workup.

Off to find a cardiologist, who found low to moderate blockage of one cardiac artery, and prescribed a vasodialator that kicked off abdominal migraines (twelve to eighteen hours of non-stop, uncontrollable vomiting).  Then another med, and a third, all triggering abdominal migraines, before she dropped her as a patient.  The GP refused to prescribe her abdominal migraine meds, because of the heart condition.   She was having ten  to twenty episodes of cardiac pain a day, sometimes passing out, popping nitroglycerine pills and enduring the resultant headaches.  Off to find a second heart doc.  Insurance refused to pay for an arteriogram, we waited to get one done as part of a research project.

By this time she was barely holding on, the cardiac pain and fatigue were so severe, she was unable to do anything:  write, read, watch TV.  Her depression worsened.  Her FTD was getting worse.  Before, she had a wall up to keep out the unwanted thoughts generated by the dying neurons in her brain.  She has practiced for fifteen years a Theravada Buddhist mental culture, anna-panna-sati, mindfulness of in-and-out breathing, the Burmese Forest School version, brought to the United States by G. V. Desani.  She has also her japam, and ishta as a bhakti yogini.  These kept up the wall for years.  Now the wall came crashing down.  Nightmares happened while awake as well as in sleep.  Hallucinations occurred, quickly recognized as such, but disturbing, nonetheless.  She sometimes feels abandoned by God, and has to fight through her own dark night of the soul.

She began falling, and re-injured her knee, repeatedly.  This kicked off pain crises involving her RSD.  Her pain  has been out of control for months.  She now must use a chair-side toilet, as the bathroom is too far away for her to walk.  Other, new pains appeared.  Intense, sharp, deep joint and bone pain; greatly worsened fibromyalgia-like pain.

Cardiologist number two had no clue about how to treat cardiac angiospasms.  I did the research and recommended a treatment plan for him, which he prescribed.  At least he finally gave the approval for the EGD.

The EGD found no pathology other than mild irritation of the lining of the esophagus and stomach.  Smooth muscle spasms again.  Again, GI had no clue of how to treat it.  Referred her to other, useless specialists (we could do some tests, but we couldn’t do anything to treat you, regardless of the outcome of the tests).  Twenty minutes on the internet yielded therapies apparently beyond their ken.  Now off to find a doctor smart enough to prescribe them.

Her heart pain is now fairly well controlled, using the beta-blocker, metoprolol.  This med also eased the nightmares that she has suffered for years.

Her throat spasms are worse, she cannot have even soft food.  She’s on a liquid diet, and sometimes has problems even with that.  Cooking was a way to show her love, now that is gone, too.

Typing is more difficult for her, neurologically.  So we adapt.  She will tell me what she wants to write.  I draft, she comments, and we repeat until she’s ready.  This is the first product.

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Posted in Bhakti, Chronic Pain, FTD, Living with Illness | 3 Comments »

My Beloved

2011-02-19

Hello everyone,

I am so happy to be able to post in my blog today.  As many of you know, I am having difficulty writing, but today I am blessed with the ability to write to you.

I read an article written during the holiday season named  Less Later, More Now! by a blind woman named Marcia Morrissey.

She talks about the stress of the things that we think we have to do for holiday preparations ” which often keep us “too busy” to light a candle and say a prayer, or read a bit of scripture, or that make us tell family members “later” when they need us “now.”

I think this happens in every day life, not just during the holiday period.  I go back once again to one of my favorite authors, C.S. Lewis, who talked about getting trapped in the “noise of humanity” and not stopping to listen to the silence of the spirit and learn what nourishes and feeds our soul and the souls of others.

I have seen a tragic pattern as I have read the countless stories of people in chronic pain or frontal temporal degeneration (FTD).  So many people who are carergivers and people who have chronic and terminal illnesses find the support of family members, friends, even fellow church members slip away.  These people gradually disappear from their sick friend or sick relatives life. They consider themselves well meaning but they are too busy, caught up in the “noise of humanity”. While living their daily lives, they feel burdened down as it is.  I understand these are hard times.

There is work that has to be done then there is “busy” work. Busy work I consider those things we do to distract ourselves.  Or maybe you are out of work right now, you’ve put in all the resumes you are able. You are feeling down so you veg out in front of the television. I know about feeling down and vegging in front of the TV.  We don’t have good cable where we are living now and I am still suffering from Turner Classic Movie channel withdrawal.

When you aren’t doing anything purposeful could you drive over and spend a little time with a caregiver or your relative or friend who is ill?  I can tell you this, one visit from you can make their day a good day and the bright spot in their week.

A little attention goes a long way. Perhaps you could do something, even the smallest thing would help.  If you can’t spend any time going to see them or you live too far away, then call them, send an email or a message on Facebook.

(To my friends, I’m not trying to guilt you into sending a message to me. I know you are there.)

Try for a minute to look at it from their point of view.  You have gone for many years thinking you had a close relationship with your family and friends. Many times you have talked about how you would be there for each other if anything happened.

Then you find out you have a terminal illness.  You expect those dearest to you will come to you and say, “What can I do?”  And what happens?  Your mother cries, “Why does this have to happen to me?”.  Your father shuffles back and forth for awhile, claps his hand on your shoulder then walks off to another room.  Your children stare at you with disbelief, run upstairs to google your illness then come back downstairs and confront you with the news that they found a site that says your disease is not terminal. Your sister is in total denial and your brother, who is a doctor, treats you like a difficult patient instead of the best friend who always understood you.

This unfortunately is not an unusual response. It is quite common.

But then you have to make the choice, do I exit now out of life or choose to go on?  I have chosen to go on.

Understanding that my spiritual self is my true self that journeys on through eternity has helped me to live with the horrible maladies that I face. What we are afflicted with in human terms may be blessings and opportunities in spiritual terms. We have to go on with what we have — like the blind woman or like the guy typing with his toes because he has no use of his arms or me using Dragon speak to dictate — and do what we can in the world.  I think to get through adversity you have to look at this world in more than merely human terms.

There is a difference between the human worldly goods and gifts and things we desire and the spiritual values. What on a human level is a disaster — to be afflicted with a fatal disease — spiritually may be a blessing.  It is terrible to suffer pain and loss, and to suffer from compassion for others that are suffering.  Spiritually those sufferings can have a spiritual purpose, to make us stronger, more compassionate, to have more understanding, and to grow spiritually.  Here in this world, now, with the afflictions and burdens we have to carry.

In my own life one of the major burdens that I have no one can see:  I continually have to keep the dam up against the flood of unruly thoughts that the death of the neurons in my brain is causing.  Unruly is a mild word.  The voices, the thoughts, are not mild.  It can be exhausting just to sit, to all outward appearances, quietly.

As I may have written before, I have spent some time reading the writings of the Saints. Two that I feel are my companions in suffering are Julian of Norwich and St. John of the Cross.   I did not ask for three wounds from God as did Julian of Norwich. Her words of suffering have been a companion in my suffering. I share with her the one of the gifts — wounds — that God bestowed upon her, which is compassion.

I also have found comfort reading the poem, Dark Night of the Soul. Like St. John, I have sought a personal relationship with God. God is the Beloved and I have a place within “where no one else can come.”  Although when I was growing up, I went to a fundamental Christian church every Sunday, I had an amazing experience when I was 13.

I was vacationing with my family in Red River, New Mexico.  We were staying in a lodge in the mountains.  I was reading a romance novel, sitting on a log. I closed the book ad exclaimed to a squirrel, “I am totally bored.”  I decided to go for a short walk.  I followed a path and about after 15 minutes, I looked around me and noticed the forest had changed.  All of the trees had brilliant colored leaves. The brook I noticed was wider and many beautiful fish swam in a pond nearby.

I looked around and saw a beautiful man in a yellow robe sitting not to far away from me.  I knew he was Jesus because he was my conception of Jesus.  He motioned and I laid my head on his lap. He stroked my hair and said words to me that I don’t remember. I felt as if I had come home.  All worries left my mind.  I fell asleep and when I awoke he was gone.

I ran down to tell my brother and he believed because he always use to believe me.  I took him back up the path but we could not find the place. My brother still believed me.  I knew this was not something I could share with my family. They would tell me it was a fantasy and it was pagan for me to say that I saw Jesus that way. Jesus just did not come to individual people in visions anymore.

But I kept this experience inside my heart and after I met my spiritual teacher, I realized I could have a personal relationship with God that needed no intercession.  God is my “Divine Beloved.”

There is a story from the East of a famous saint to whom God appeared as a beautiful girl of sixteen.  He was so tormented by the absence of his beloved when she did not appear, that he felt he had to abase himself to get her to return, to the point of licking dog droppings in the street.

I also have taken much comfort from reading the words from Rumi about his divine Beloved.

The reason I am sharing these personal relationships with God is that this relationship has kept me strong. I have lost just about everything that people lose at one time or another.

In her article Mary quoted the Scripture readings of the third Sunday of Advent, Isaiah 35:1-10:

“…They will see the glory of the lord, the splendor of our God.  Strengthen the hands that are feeble, make firm the knees that are weak.  Say to those whose hearts are frightened: be strong fear not!  Here is your God; with divined recompense he comes to save you.  Then will the eyes of the blind be opened, the ears of the deaf be cleared; then will the lame leap like a stag.  Then will the tongue of the mute sing.  Those the Lord has ransomed will return and enter Zion singing crowned with everlasting joy; they will be with joy and gladness.  Sorrow and mourning will flee.”

It is wonderful to read these words promising what will happen after we have shed this mortal suit.

Many of you are familiar with the passage that Mary quoted in her article, “Are you the one who is to come, or should we look for another?”  Jesus said to them in reply, “Go and tell John what you hear and see: the blind regain their sight, the lame walk…the dead are raised, the poor have the good news proclaimed to them, and blessed is the one who takes no offense in me.”

Many take this passage to mean that Jesus is saying he is “The One.”  I don’t discount this meaning

For me, this passage has an additional meaning, now and for everyone with ears to hear.  The one who is blessed is anyone who realizes that their true self is their spiritual self and who acts accordingly:  walk their spiritual path and nourish their spiritual needs. The truth is good news to the poor, to understand that all material gains are not real, that they will pass away in a short time, but you can gather what makes you spiritually rich, and that can last for an eternity.  The dead are raised are those who were dead to their spiritual self.  For the lame, no legs are required to walk with your true body — your spiritual self.  The blind can come to see the spiritual truth.

It is hard for people to understand about blessings.  A huge loss, psychological and physical pain, such things are not blessings within themselves.  But if you can understand that what we see around us, this mortal world is only a fraction or perhaps a distorted perception of the real world.  We are all spiritual beings, connected in ways that are hard for us to conceive. We are busy ants carrying crumbs. Any good or bad intention you have starts crafting a design that you do not see until it comes back into this world and affects you and others in ways you may or may not expect.

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Posted in Bhakti, Dying, Living with Illness | 4 Comments »

Loss, Part 1

2010-07-19

I apologize that I haven’t been able to post here for awhile.  Diseases and sundry disasters have intervened.  But, I am back and looking forward to sharing my thoughts and information with you.

Loss is something everyone experiences at some time in their life.   All will experience losing someone or something, and the greater the value, the keener the sense of loss.

When I talk about loss with people I often bring up a very famous figure, Job.  Here is a good, happy and wealthy man who  lost almost everything in this world — wealth, family, then health.  Whether you believe Job actually existed or not, the biblical story of Job is a very good account of how a person deals with loss.  Even Jung devoted a small book to the problems implied by Job’s losses, titled, Answer to Job.

I’m not going to debate in this post whether there is a God and why God lets things happen to good people.  I may have some further comments on this after re-reading C. S. Lewis’s The Problem of Pain.  ( Or rather listening to it as an audio book, as I can no longer read the paper pages of books and magazines.)

I want to point out Job as an example of a man who lost everything that he could possibly lose — save only his life — and still had faith that there was a higher power, that he was not alone in his suffering and that as long he lived there was some purpose for his life.

I have lost so much in my life. Those of you who know me understand that my life has been full of suffering and loss.  I have a PhD in loss (Pain, Hardship and Disaster).  Even my life is being taken.

When we suffer loss we may have some forewarning or we may not.

Even if we know the loss is coming, as much as we try to prepare ourselves, we are often surprised at the effects on our lives.

For me, there came a time when I could no longer drive.  Selch and I had talked about some problems I was having with loss of attention while driving.   I scraped a toll booth, and a guard post in a filling station.  When my son was with me, he warned me a couple of times that I was swerving off the road, but I didn’t recall it, so I thought he was exaggerating.  One day, Selch followed me to get the car fixed and told me that I was swerving in and out of my lane on the road and it was too much of a danger for me to drive.

I imagined when I was younger that if I ever wasn’t able to drive, I would be totally devastated.   I think because I had already had so many other losses and I had been driving gradually less and less, I was better able to cope with the loss than someone who was still working or who had small children.

Still, I had regrets. We lived on the East Coast and I wished I had taken more of the driving trips I loved to do.

From the time I got my license as a teenager, the ability to drive has meant freedom.  My mother would take away my car keys to punish me because she knew that it really tortured me, to not have the freedom to get out of the house, get into the car and go somewhere, or nowhere, just so long as I was driving.

For many years, even after I had children, if I was troubled, depressed or mad, I would jump in the car and drive down the highway for several miles and drive back.   I imagined if I had been born a few hundred years ago, I would have gotten up in the middle of the night and run through the forest or the fields.  (Also,  I probably would have had a shorter life span, because even Little Red Riding Hood knows it is dangerous to walk through the forest at night!)

Now, that I am confined to my recliner most of the time and getting out is a major production — with a wheel chair and making sure that I bring a bag with all my medications — I rarely think of driving.  Still, some nights I wake up at night searching for my keys until I realize I can no longer get up and go.

For me, there have been losses I haven’t expected.  I had been having abdominal pain that had been ongoing since the last trimester of my last pregnancy and had been getting progressively worse.  I saw an OB/GYN who told me I probably had abdominal adhesions.  They could be pulling on sensitive tissues internally, causing the pain, without any abnormal lab results.

She told me that she would do a laproscopy of the abdomen, a fairly simple day surgery procedure in which she would make a small cut and insert a tube in my abdomen so she was able to see the adhesions and cut them out.  Selch took me to the hospital on Valentine’s Day in 1997.

I had worked in the medical field for several years and  had day surgery before.  I was first aware that something wasn’t right when I woke up and they were pulling a tube out through my mouth.  Even though I was very groggy, I knew that I must have had general anesthesia.  I panicked inside. What had gone wrong?

The doctor told us that there had been more adhesions than she thought so she had converted my surgery to a laparotomy.  I wondered why she did a laparotomy without having me consent to it first.  From the moment I came out of anesthesia, I had severe pain in the right side of my abdomen to my back and down to my thigh.  I didn’t know then that the pain would never go away.  She had damaged three major abdominal nerves, and surrounding soft tissue, causing Reflex Sympathetic Dystrophy.

I couldn’t walk correctly for the first two weeks and the doctor told me it would resolve itself.  The walking got better but the pain was unbearable.  I had taken a two week leave of absence from my job.  I had just started a new job.  I tried to go back a few times to work but could not stay for more than a couple of hours.  My pain was too great.  I had to resign from work.  Selch, who was my boyfriend at the time, offered to let me stay at his house to recuperate.  I had to let my apartment go.  We thought it was temporary and that I would be able to get back up on my feet and get a job eventually.  I was never able to go back to work.

I had been employed full time since I was 21, and had been the primary bread winner after my children were born.  I worked my way up to being a director of a department at a young age.  After I gave birth to my daughter,  I worked for a company in which I assisted doctors in reviewing medical records for quality, then I became a consultant in a health information department.  I had been through a lot of hardships already and had had two failed marriages, but I always thought everything would be okay because I was able to support myself and my children.  Not having that security was a huge loss.  From then on, I was dependent on someone else.

I often  don’t realize on the last day that I am able to do something, that I will never do it again.

When I left my job the last day that I worked in March 1997, I did not know that I would never work outside my home again.  I had lost relationships and things before this happened, but I always believed that no matter what I would be able to support myself and my children. I did not make a great deal of money but I worked in the medical field and there was always a need for the type of work I did. Originally, I planned to stay with Selch for two weeks while I was recovering.  I never left.

I lost the sense of security and the independence that I would be able to take care of myself and my kids no matter what happened. And losses have a tendency to pile up on top of each other.   I had received a lot of emotional support over the years from a network of close friends at work. They continued on with their busy working lives.  We met a few more times for lunch and after work, but I would repeatedly have to cancel plans because I was not feeling well.  My friends stopped asking me to go out.

People started feeling uncomfortable around me. They didn’t know quite what to say about my pain and I didn’t want to talk about it much fearing that I was imposing on them. The other problem was that I wasn’t in the working world anymore. I wasn’t part of the team, I’d lost track of the players.

Finally, one of my last work friends flew the coop. I called her the Buzzard of Happiness, because when she talked about her life it all seemed so hopeless, but yet she had been a good solid friend who had a quirky sense of humor.

The last time I talked to her was when I had to cancel a movie date with her for the third time. She told me she could no longer be my friend, her life was depressed enough without having to think about my situation. Our outings had been one of the bright spots in her life and she didn’t want me to become another person she dreaded seeing.

My feelings were hurt but I appreciated her honesty. She was able to say what many are not able to.

We discovered that my pain would never go away.  My RSD might have been treated effectively, had it been diagnosed sooner.

Many of us have some losses that are so profound and hurt so badly that they are difficult to share. I have had a few losses that bring tears to my eyes when I even start to think of them.  You know these losses that leave you so brokenhearted that you build a grave someplace within yourself, a quiet dark space where you can go to mourn.

I spent most of my day today trying to explain the loss of my children to you.  When I started typing the words, I   remembered again the one normal weekend that became a catalyst of change for me and my children.  By the time I finished, tears were dripping down my cheeks and snot was flowing out of my nose.  I am not an attractive crier.  My eyes are red-ringed, my nose is as red the honker on my coach’s face after he had been on a bender, and  my head feels like the dead weight of my sorrow has crashed down upon it.

I can’t share that story with you today because someone with piercing words  recently sliced open the tough scab over my tender wound.  Yes, I am bleeding again, but I am not as raw as I once was.  I have developed tools over time to staunch the flow.  So I will save that story in draft for another day.

When one domino falls, the others behind it usually fall in an orderly fashion.  That isn’t how it is when you are riding the train of life.  One break in a relationship, a health crisis, even what might begin as a small lapse in judgement can cause a cascade of collisions on down the road.  Many continue on life’s journey but they are  riding a on a crooked rail.  The heart becomes a wounded member that limps between the strong beats of life.

Posted in Bhakti, Chronic Pain, Dying, FTD, Living with Illness | 1 Comment »

For Those Who Are Not Heard, Part 2

2010-07-04

Doctors often do not listen to patients who have FTD, and will tell them that they do not have FTD.  They know so little about the wide variety of symptoms associated with FTD disorders, and how these symptoms and underlying diseases overlap.  This same phenomenon extends to the rest of the medical community:  those of us with illnesses, and even our caregivers, are not heard.

There is still much unknown about FTD and related disorders.  It is only this year that the leading researchers are starting to agree on which signs to look at and the basic measurements that they need to take, to enable them to start sharing and comparing the knowledge and data that they have each been collecting separately.

Further down the research food chain, doctors grab the more common stereotypes, and apply those typical symptoms as inflexible requirements for a diagnosis.  Many people who have FTD do not show “typical symptoms”, and so these doctors refuse to order MRI’s and PET scans, or the neuropsychological testing, that could confirm these presenile neurodegenative diseases in the early stages.  I was told by one self-proclaimed expert that if you don’t have emotional blunting, you can’t have FTD, despite physical evidence on an MRI of unilateral frontotemporal atrophy.

There is no cure for FTD and related disorders but neuroprotective medications do help to slow the damage from these diseases.  There are certain medications that people with these disorders that should not be on, certain medications that make their symptoms worse.

I understand that doctors are taught to sound confident and authoritative in talking to patients.  The idea is that the patient will be comforted to feel that the doctor knows his stuff.  The problem is that a doctor’s confidence in his knowledge needs to be based on fact, not fancy.  Missing a diagnosis of FTD adds years of uncertainty and unnecessary misery to patients and their families, over and above the depredations of the diseases.  And there are few things as disheartening to me as the aggressive ignorance of a doctor confidently and authoritatively asserting falsehoods.

Would it really be so hard just to listen?  To preserve some modicum of scientific humility?

Or maybe this humility is the means by which we can distinguish between the truly knowledgeable researchers and the lesser lights.

My words about this disease that is taking my life — robbing me of my grandchildren, and the world of the art that I want to create — come straight from my heart.  But there are so few who have the heart to listen.

A long time ago in December, I went to a bar, to listen to the words of a poet who was blind and hard of hearing.  He had another poet recite his poems.  All of his friends had promised to be there to listen to him.  This was a major event in his life.  He had never before revealed his poetry, what was in his heart, to anyone.

So the lights were dimmed and a blue light enveloped an attractive woman who sat next to the poet.  Her voice was like velvet and his simple poems about love flowed out of her mouth.   I was drawn into the poetry, my heart beating with the rhythm of his verse.

Then I felt a cold breeze periodically slip past my shoulders.  I looked around the room.  People were quietly getting up from their seats, stealing out like thieves into the night, slowing robbing the room of its humanity.  Then I remembered that another friend of ours, a poet who read his poetry every week at this time was reading his work  just down the street.  This section of town was known for the bars where poets read and people listened to live music.

After fifteen minutes, there were only five people there, the audience was the manager of the bar, a new female friend of the poet’s and me.  The female poet kept reading his poems and occasionally, she would address “the crowd.”  My poet friend continued to grin from ear to ear.  I wondered if he had known that anyone had left.  Then I thought perhaps he was better off not knowing.

I knew that if I walked down the street, most of the missing audience would be there.  I imagined myself chiding them for their transgression.  But, I decided, why waste my time in a verbal attack on fools, when a man was sharing his soul with us here.

About ten minutes before the session ended, his “friends” began to file back in as quietly as they had left.  Then she of the velvet voice said, “Before I read a final poem, I want to thank all of Bill’s friends for coming here tonight to listen to Bill’s poetry.  She rattled off their names one by one and they each squirmed a little in their seats or made some facial gesture, to acknowledged in a social way that they had been caught.

Then the poem was over and they all gathered around him to tell him how his poetry had touched their hearts.  I parted quickly not wanting to hear their gushing lies.

Alas for us who suffer these deadly diseases, there is no narrator in this life to name the names of those who will not hear.

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For Those Who Are Not Heard, Part 1

2010-05-23

The other day, I was trying to make a referral and couldn’t remember how to spell my neurologist’s first name.  I asked Selch.  It’s not at all a common name.  He did a quick search on what he thought her name was just to check.   He found a page on the internet that matched the name, but didn’t look quite right.  He started to read.  The woman was a doctor and a PhD, but was recently retired from the Texas A&M College of Medicine as a professor of surgery, not a neurologist.  She was writing about two epiphanies that she had experienced in her life.  I noticed he got a little misty as he read.

Her first epiphany came in response to a prayer.  She was called to be an ordinary Christian woman.  A bhakta.  [Note:  In ancient India, the followers of Vishu marked their foreheads with three vertical lines, and the followers of Shiva, with three horizontal lines.  The term bhakta means “one marked by striations”, and came to be used as a collective term for those who devote their lives to God, of whatever persuasion, whichever direction the lines are drawn.]

Her second epiphany struck closer to home.  Her mother became ill, and the illness damaged her brain severely.  It left her “locked in” with no means of communication.

Her cerebellum–the center of coordination–had been destroyed. When this happens, there is no way to speak, no way to signal. Try to signal and your hands fly wildly like startled birds. Try to speak and a scream comes out.

Part of the second epiphany concerned her mother.  God told her, “…I need someone with the resourcefulness to reach this woman trapped in a body that doesn’t respond.”  Many would have said that her mother was gone, and put her into a home.  That way, she wouldn’t have to agonize about the effects on her two young boys and her toddler, Beth.  It would certainly be the easy way out.  Beth would stand for hours by the wheelchair, looking at her grandmother.

Instead, she persevered and worked with her mother, eventually finding a way that her mother could respond in ways that meant Yes or No.  Her mother was still there.  They found ways to communicate. Her mother was not gone.   Selch puts it in computer terms:  The problem was with the interface.

I can relate to little Beth because I was also called Beth when I was growing up.  I remember also standing by my grandmother’s chair.  She had severe Obsessive Compulsive Disorder, but we were very close.  My doctor and I talked about how we had both been called Beth growing up.

Then it all became clear to me.  The little Beth in the story is my neurologist.

This story is important to all of us who are patients and caregivers.  We wonder sometimes, “Is my loved one still there?  Should I keep trying?  Maybe it is time to give up.”  I read many messages from caregivers who wonder if their loved one is still there, should they keep trying to communicate.  I always say, Yes.

Some people, frequently doctors or scientists, will try to “objectively” define a person as a collection of behaviors.  If the behaviors change drastically, they say the person is no longer there, that this is a different person, as they no longer act in the same way they used to.  They will frequently tell the family, “Do what you think is best for the remaining members of your family.  The person you loved is no longer there.”  What would have happened to little Beth’s grandmother, if her mother had taken this view?

I am more than a collection of behaviors.  Christians believe that there is an immortal soul, and that this physical body is only temporary.  Buddhists and Hindus also believe that this body is temporary, that we are not simply the body, but will be reborn or reincarnated.  There is a problem with my body, my brain has a disease that will cause my body to die.  It is not a problem with me.  It is a problem with my interface to this world.

When my disease progresses far enough, I will no longer be able to communicate in words.  Selch will find new ways.  He knows I will still be there, loving and caring and suffering, on the other side of a broken and deteriorating interface.

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Memento Mori

2010-03-29

Today the effort should be done,

Who knows if  ‘morrow death will come?

— from The Word of the Buddha

Since antiquity, serious thinkers have kept reminders of their mortality close at hand, to help free their minds of earthly bonds and distractions.  Frequently they would be portrayed holding a skull, or having one on their desk, their memento mori, remember that you will die.

To the Anchoress of Sterling, they come unasked.

The Anchoress sat working by the window, next to the new basket of spring bulbs that are vigorously sprouting.  The Anchoress turned from her squint and spoke to me.  “For the past three minutes I lost the ability to write.”

“How so?”

“Three times I tried to write a note.  Each time, when I looked at it, it was as though I was looking at a foreign language.  I didn’t know what the letters were or what the words meant.”

“Is the inability gone entirely now, as though it never was?  Or, are there remaining effects?”

“There are remaining effects.  I am repeating letters too many times when I spell words.  And I am confused, still.”

After more pointed questioning, she asked, “Do you think that I am going to lose the ability to write, permanently?”

“Yes.”

“Then I’ll just move on to dictating, as we talked about.”

“It may not be for a long time yet.  You’ll have better days, and worse.”

“It’s not how I thought it would be.  I thought it would be there one minute, and then it would be gone.  But it’s more complicated than that.”

“You mean thinking that you’re writing someting correctly, and it being wrong, and then realizing that it’s wrong.”

“That’s it.  It’s exactly like you said, What was the word?”

“Interface.”

“Yes, it’s exactly like an  interface problem.  Like with the computer.  I know what I am trying to say.”

“But it just doesn’t come out right.”

“It’s very upsetting.”

“I know.  And scary.  I think we need to concentrate more on the more important things, while you can still write, and spend less time on the unimportant.  Only do the unimportant things after you are unable to make progress on the important work.”

“You’re right.  But there are some things I want to do.”

“It’s important that you follow your interests.”

“You’ll have to remind me, prompt me, because I can’t remember.  You’ll have to come close and sit with me, and help me along.  Once I’m writing, I love it and I can lose myself for hours.”

“I know.”

“It’s strange that you can have something be so important emotionally, that you are reluctant to approach it.”

“But it’s a very natural response, a paradox.”

Philippe de Champaigne, Life, Death, Time

Vanitas, Philippe de Champaigne , 1671

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Living with FTD-suffering

2010-03-22

I recently read an article “You will call, I Will Answer.”

Anyone who is going through suffering will be able to relate in some ways to William Stunz’s account of his life.  I don’t totally agree with everything that he says.  It has helped me over the years  to read accounts of other people’s suffering and also talk to other people who are suffering.  Each person who is suffering  needs to find tools to cope.

A book that I hold close to my heart is “The Revelation of Divine Love” by Julian of Norwich.  I can give you no better explanation of the connection I feel with the Anchoress than Selch describes in his recent post.

Stunz talks about how he felt when people inadvertently blamed him for his pain due to lack of faith.  Many of us who have an illness or who are  caregivers have  experienced well wishers who tell us we need to have more faith or things would be better if we prayed more often.

I was raised in a family who went to a fundamentalist Christian church.   Now I practice  Bhakti Yoga and Theravada Buddhism.  I do not judge anyone’s faith or religion.  All paths  lead to God. We are all a part of God, brothers and sisters, connected by our souls.

Why does God let bad things happen to good people?  There have been countless books written on this subject and for many, this question has no answer.

Dr. Stunz says, ” I do not think that my suffering is God’s discipline.”  I agree that suffering is not literally “God’s discipline”, but I do believe in  karma good and bad.  We make our own karma, some life experiences are decided before we come into this life and in other matters we have free choice.  We are also affected by other people’s karma. Karma has helped me personally to  understand suffering.  What is good for spiritual growth may not seem like a good thing for us while we are living in our physical bodies.   The reality we perceive as humans is only a small part of  “The Truth.”

This does not make suffering less painful or less real for us.

Stanz recounts about whether or not suffering has made him a better person. We have heard many times that suffering will make us stronger and that is the last thing we want to hear.  My own experience parallels the experience of Dr.  Stanz.  At first, when I developed chronic pain I was overwhelmed by sadness, depression (anger turned towards myself) and despair.  I came to realize that I did have a choice, give up or go on with my life one day at a time.  If I dwell on the past too long , it does nothing to change my current life and it wastes the limited energy that I have that could be used in a positive way to make myself and others feel better.

For those of us who suffer and those of us who are caregivers, we must realize that life changes for everyone.  Chronic illness, FTD in particular, changes our lives, behaviors of the caregiver and of the loved one, in  particularly difficult and often incomprehensible ways  While the illness robs us of many things, the part of us that is real and true, the being who cares, loves and wants to reach out to others is still there.

When a woman is grabbing the arms of her husband  because he is trying to take the car keys in a boorish and childish manner because he has FTD and doesn’t believe or remember he can’t drive, doesn’t she think of the many times those arms around her made her feel safe and warm?  She has reminded him so  many times lately that he cannot drive and she thinks about when she may have handed him keys with no thought of peril for his well being.  When you can’t manage not wetting your pants do you ever think about the time not too long ago when you put your pants on one leg at a time without any thought and managed an entire department of people?

We must not forget who we are, our true selves and understand that the disease is causing these troubles and behaviors and the disease is not who we or our loved ones are.  We should hold tightly to this life rope that connects us to who we really are.  It will help us hold on to our dignity and compassion for ourselves and our loved ones during the most trying times.

I agree with  Dr.  Stanz that accepting that I had a terminal illness was easier than I thought it would be. Once I accepted that everyone dies,  I am understanding there are blessings  that come with  a shorter span of  interaction time with the world  so I should try to enjoy things while I can

I had an eating disorder when I was young and I have never liked food.  Now I really enjoy eating.  Selch is cooking dinner right now and preparing fruit salad.  Who would have thought that fruit salad could be downright delightful?  I appreciate small things like chocolate pudding, looking out the window and watching the birds,  and talking to an old friend.  It is a struggle for me to go out anywhere, but I still find activities that make me feel good.  Like  Stenz said, he was able to feel more physical pleasure.

I often go to Second Life which is a virtual world on the Internet.  I have an avatar there who can fly, swim, sail, see many beautiful places and visit many interesting people.  I think allowing fantasy and creativity in to your life when you are suffering is a good thing.   We have forgotten how to play as we did when we were children.  Yes we have responsibilties but  all of us who are suffering could use some play therapy.

Last year was the roughest year of my life.  What helped me get through that bad time was definitely my relationship with Selch,  my partner.  During that time, Selch often teased me that I was Jobette.  One bad thing after another kept happening until I got to the point that I felt like I only had a few things left to lose.

Many things and relationships I thought had to be there for me to ever be happy again didn’t need to be there and were actually impeding progress in my life.

Progress in life has a lot to do with knowing, loving, accepting and protecting yourself as you would your dearest friend.  I can only change what I do.  I cannot change anyone else just by insisting that they be the way I want them to be.

It may feel like we are not in control of our lives because of the circumstances that we are in.  But, we make choices all of the time about how we will react to the situations where we find ourselves.

There is something to be learned from everything that I experience.

I practiced mindfulness exercises before it became “fashionable,” and  these practices have greatly helped me with my struggle with difficult and unwanted thoughts.    To be able to quiet the mind of all its busy thoughts for even a short period of time is very helpful.  Like any exercise the more you do it, the easier it is to do and the benefits are greater.

I am learning  to stop caring about what people think of my situation. Selch and I have to focus our energy on living our lives the best way that we can.  It is so true that real friends will be supportive and if they aren’t, then they are not a “true friend.”  This also applies to family members.

If you are sick or you are a caregiver , it is you who are in the trenches.  You don’t need a lot of well wishers who don’t want to get their hands dirty.

I am in constant pain and FTD is keeping me from “controlling” many areas of my life but I constantly remind myself that the illness cannot control who I am.  Eventually it will disrupt my interface with the world to the point that I will not be able to communicate or understand what anyone is saying to me.  I have spent years in this life continuing the journey towards self-awareness.  What will happen as  I  watch the disease that is causing my physical body to do things I would never do?

Maybe, my weird sense of humor will remain.  I hope I will be able to be tolerant and understanding of that physical body that is the shell of me.

Mr. Stenz spoke of one of his fears of death was the fear of be disappointed that he didn’t live a better life.  I can relate to his feelings.  Sometimes I still do ask my self why I am  here but now  less and less I feel like my life is not useful so why don’t I just die?  I know I have  been given blessings of a well stream of creativity, the dam of writer’s block has burst.  I have so many characters telling me their stories, I often wonder who should I tell what and when in this limited time that I have.

Why do I live? Why is there suffering?  Perhaps, like children we ask many questions but as we grow in time, life (the continuing journey and existence of our being) we will no longer need to ask the question.

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Posted in Bhakti, Chronic Pain, Dharma, Dying, FTD, Living with Illness, The Anchoress of Sterling, Treatment | 1 Comment »

The Anchoress of Sterling

2010-03-21

Julian, or Julianne, Anchoress of Norwich petitioned God to grant her three things.  These were things no normal woman would want.  But then Julianne was not a normal woman.  She was an Anchoress.  Rather than a family and children, she chose to be celibate.  Rather than living in a village, she turned away from the world toward God.  She had herself ceremonially walled up into an anchorhold, a tiny room built against the outside wall of a church or a cathedral, with only a tiny window, a squint, as a portal to the world.  Through the squint, food came in, chamber pots came and went, and advice might be given to those who asked.  She spent her days praying to God.  She asked for spiritual blessings for one who has renounced the world, not for human blessings for one wholly immersed in it.

She sought to experience fully the pain, the suffering, of Christ, in his agony, dying on the cross.  This was the first of her petitions.

The second petition was for God to grant her a terrible illness at a young age that would bring her to the point of death.   Her petition was granted.  She faced her impending death in her anchorhold.   She was attended, it may have been, by a servant or two.  After receiving the Last Rites, she recovered from her illness.

Her third petition was to receive three specific wounds from God:  true contrition, natural compassion, and fullhearted longing for God.  Unlike the first two petitions, she attached no conditions to the third.  While it is charming — to me, at least — that she attached conditions to what she asked from God, not to attach conditions is courageous.  Perhaps the only thing more dangerous in human terms than asking God for spiritual blessings is to ask them of a lesser being.

Later in life, the Anchoress of Norwich wrote about sixteen visions, or understandings, or showings, that God granted to her.  She wrote The Revelation of Divine Love so long ago that the English she wrote then has to be translated into English we can understand today.  It was the first book by a woman written in English.  She saw God’s divine love as the love of a mother.

I know another anchoress, who is still, for now, among the living:  The Anchoress of Sterling.  (No, not the worldly-wise Catholic woman who blogs as The Anchoress!  A real anchoress.)

To the Anchoress of Sterling, all the blessings Julianne sought have been granted, without petition.

Her physical sufferings have exceeded those of Christ on the cross. His pain extended for days.  Hers are more severe, and for more years than his days of pain.

She has been granted at a young age severe physical illnesses — not one, but several — that will take her not only to the point of death, but to death and beyond.

She has born the three wounds throughout her life.  These wounds are so much a part of her, that her greatest fear facing death, is that she may be deprived of them.

She lives as a celibate, in an ashram or abbey, in a small room, in a single reclining chair.  She cannot lie down on the bed in the room, as it causes her great pain, and vertigo.

She spends her days praying to God.  She sees God as a girl or young woman.  Her rosary is from a Catholic Domitilla, her prayers a great Vedic mantram with bijas.   She also practices Theravada Buddhist mental culture.  Her squint is a notebook computer, with a wireless internet connection.

She has a rough-spoken manservant, whom she met on the internet a decade and a half ago.  He became her lover, then her spiritual teacher, then her husband, now her servant.  He sleeps on the bed next to her chair, and tends to all of her physical needs.  He also spends his life praying to God, doing the mental culture of Mindfulness of In-and-Out Breathing, cultivating love for his mistress, and working at a job to provide for her needs.

Her strength of resolve and her creativity are both increasing as she approaches the end of this life.  This blog is one of her happy conceits, a metaphor of her life.  She is a were-seal, a silkee of Celtic lore, who lives in the sea, sheds her seal skin to live and breed on dry land as a woman, then must leave her husband and children, don her sealskin, and return to the sea.  The sea is the heaven she left to suffer in this comparative hell, and to which she will return.

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