Archive for the ‘The Anchoress of Sterling’ Category

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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