Posts Tagged ‘death’

The Light and the Tree


A  few nights ago, I was looking out of a window and saw a street light that was next to a tree casting an eerie artificial light on the tree’s leaves.

For a few minutes, I was transported back to a night when my 16-year-old self was staring at a light shining on a tree outside of the window of my great Aunt Jewel’s house which was located in a small town in Texas

I had just received my driver’s license a few weeks before.  Ever since the movie, American Graffiti, many fad’s had been revived from the 50’s, one of them being “cruising.”  Early in the evening, I had been cruising down main street in my yellow Maverick with my younger brother who was a reluctant passenger.  We had been going to visit my grandparents at least one weekend a month ever since I could remember.  My cousins were much older than we were and there wasn’t much “treasure” left up in the old closet upstairs at our grandparent’s house  for us to discover.   I was thrilled to be able for the first time to  drive up and down Main street, windows down, radio playing “We Are the Champions” and local boys honking their horns and shouting, “Baby come take a ride with me.”

When I was looking at that light many years ago, I remembered at that moment feeling excited that a new world of possibilities was opening up for me and also secure in an environment of extended family that wrapped their  loving arms around me.

Then I came back to myself as I am now  looking at the light next to the tree.  I thought about my grandparents, my great-aunt who passed out of this world years ago.  I began sinking into constant pain and and dwelling in disappointment that my grandchildren will never be coming to “Grandma’s house for the weekend.  I  lived in a world where I had lost much.  Before I feel  down any further in the well of despair, I stretched my back and lifted up my head and whispered a short prayer.

My mind flooded with many life  lessons  that have resulted in strength,understanding and compassion.  I realized I do have in front of me a world of possibilities and ahead lies the preparation for shedding this broken shell. I will continue my journey  with my true identity, that part of us that always will be  Imagine those possibilities  and as Captain James T. Kirk, Starship Enterprise, once said, “To infinity and beyond.

Living with FTD-poem that applies to people who have FTD


I read this poem on a support group that was written by a man who died in a geriatric ward in Nebraska.  I think it applies to people with FTD also.

Crabby Old Man

What do you see nurses? . . . .. . What do you see?
What are you thinking . . . . . when you’re looking at me?
A crabby old man . . . . . not very wise,
Uncertain of habit . . . . . with faraway eyes?

Who dribbles his food . . . . . and makes no reply.
When you say in a loud voice . . . . . ‘I do wish you’d try!’
Who seems not to notice . . . . . the things that you do.
And forever is losing . . . . . A sock or shoe?

Who, resisting or not . . . . . lets you do as you will,
With bathing and feeding . . . . . The long day to fill?
Is that what you’re thinking? . . . . . Is that what you see?
Then open your eyes, nurse . . . . . you’re not looking at me.

I’ll tell you who I am. . . . . . As I sit here so still,
As I do at your bidding, . . . . . as I eat at your will.
I’m a small child of Ten . . .. . . with a father and mother,
Brothers and sisters . . . . . who love one another.

A young boy of Sixteen . . . . with wings on his feet.
Dreaming that soon now . . . . . a lover he’ll meet.
A groom soon at Twenty . . . . . my heart gives a leap.
Remembering, the vows . . . . . that I promised to keep.

At Twenty-Five, now . . . . . I have young of my own.
Who need me to guide . . . . . And a secure happy home.
A man of Thirty . . . . . My young now grown fast,
Bound to each other . . . .. . With ties that should last.

At Forty, my young sons . . . . . have grown and are gone,
But my woman’s beside me . . . .. . to see I don’t mourn.
At Fifty, once more, babies play ’round my knee,
Again, we know children . . . . . My loved one and me.

Dark days are upon me . . . . . my wife is now dead.
I look at the future . . . . . shudder with dread.
For my young are all rearing . . . . . young of their own.
And I think of the years . . . . . and the love that I’ve known.

I’m now an old man . . . . . and nature is cruel.
Tis jest to make old age . . . . . look like a fool.
The body, it crumbles . . . . . grace and vigor, depart.
There is now a stone . . . . where I once had a heart.

But inside this old carcass . . . . . a young guy still dwells,
And now and again . . . . . my battered heart swells.
I remember the joys . . . . . I remember the pain.
And I’m loving and living . . . . . life over again.

I think of the years, all too few . . . . . gone too fast.
And accept the stark fact . . . . that nothing can last.
So open your eyes, people . . . . . open and see.
Not a crabby old man . . . Look closer . . . see ME!!

About Dying


Today has not been a good day.  I’ve been having problems with pain and  I am lingering in depression.  I was telling Selch that my medication helps treat many of my symptoms but it can’t take away my disease.  My illness is like a dark invader who is always with me.  I feel him behind me.  Sometimes his dark hands rest on my shoulders.

There are times when I feel more freedom my illness  such as when I am praying.  My prayers are like a shield that guards against unwelcome thoughts.  In the best of times, I am with my Ishta (the desired form, the aspect of God that was given to me by my spiritual teacher.)  Listen to  Loreena McKennitt’s  Dark Night of the Soul.  It is a good description of the feelings I sometimes have.  The poem was originally written by St. John of The Cross, On a Dark Night.

Sometimes in the midst of a wonderful day-dream, I gradually see a small dark thread.  As I get closer, it becomes a long dark ribbon.  I know that it is my connection to death. I’ve considered touching it or perhaps even grasping it with a gentle tuggle.  Perhaps, I will do that someday.

Even though I have a terminal illness, no one can tell me how long I have to live.  It isn’t like some forms of cancer in which the doctor can make a determination based on survival rates.  This dark spider lays her “eggs” (sometime tau bodies) in various places within the frontal and temporal lobe.  No one can predict which neurons will die.

When I received a letter from my doctor’s office and Selch read those words Pick’s disease (FTD) , it altered my sense of physical self for the rest of the time I have left on Earth.

My life  has been filled with good times and bad.  There have been times when I was up to my neck in the mud of Earth immersed in life.  Experiences such as motherhood, marriage and career have drawn me into the same world as everyone else but at strange unexpected times I  have this sense of being on the outside looking in.

We all have to die and to find out that I will be living on the Earth a shorter amount of time than many of those I love dearly does make me feel sad.  Yet, now I have a sense that I may be going back to the place that I belong.

So, I do not fear death itself.  I call the dark presence an invader because I did not invite him to come and he draws physical life force from me pressing on my back forcing me to painfully exhale life energy.

We are not only our physical bodies.  I think what I fear more than death is the continuing experience of a faulty interface that will gradually  keep me from communicating that those that I love.  I’ve asked Selch if I will be able to find a way to tell him I am still here.  He says he will always know that I am here until I have departed from this life.

I have lost many things over 13 years of having a chronic pain syndrome and then five years of having symtpoms from my degenerative brain disorder.  I do not have  what people call their personal freedoms.  I’m not able to drive, I can’t do activities of daily living.  I have apathy about doing the most simple things  so I have to be constantly reminded even to drink water.  Yet, I am able to still read articles and stories on the computer and type on the computer.

As I mentioned before, the disease  has its own special design of destruction for everyone that it touches.  So, it is hard for me to explain to people  how disabled I actually am because I am still able to write.

In the last month, a few people who I know who have FTD have fallen several steps down the stairs of functionality.  It is hard to find anyone with FTD who can communicate.  I feel like there are a few of us are clinging to a lifeboat and when one of us slips down, it is a major loss.

Selch reminds me that this does not mean that the same thing  will happen to me but for me each time one of the members that falls off the raft,  is  a ray of hope has disappeared.

Before I started this post ,I read an article,  Hard Choices for a Comfortable Death: Sedation. The author of the article writes about his discussion about intraveneous “terminal sedation” with different doctors who are taking care of patients who are dying  in various hospitals.  The process of  IV “Terminal sedation”  involves bringing people with a terminal illness into the hospital, some who have been receiving home hospice care, because they are have extreme discomfort that can’t be managed by home hospice.

The doctor has a lot to consider in these situations including how the family feels and  previous wishes of patients to die at home with their loved ones that were made before they started having intolerable pain.

I’m not sure about how I feel about IV terminal sedation.  Many doctors argue that it is the disease itself  at the end that kills the patient, not the pain medication ,that they become tolerant off  in a short period of time.  For instance, how would that work for people like me who are already considered “opioid tolerant” meaning that I have been treated with narcotics by a physician over a long period of time so it requires a higher dosage to treat my pain.  Then I wondered if once people who are opioid tolerant are undergoing  IV sedation, are they still feeling pain at some level?

Many times during terminal IV sedation, the patient is not given any fluid or nourishment.  The physician explains that it helps the patient to rest more peacefully because the body isn’t stressed having to process liquid and food.  But, are they actually being “starved to death?”  These are questions I can’t answer.

I have been under IV sedation many times for many procedures.  Several times IV sedation was considered necessary for the doctor to give injections that contained pain relieving medication into my spinal nerves.  I received 8 course of IV sedation when I was in the hospital two years ago  for a month due to an enormous  deep vein thrombosis.  Those  attempts at IV sedation were not very successful in treating the pain caused by the procedure because the doctor wanted to give me less IV sedation because I was on a high dosage of pain medication.  I wish sometimes that chronic pain patient’s could carry a pocket pain management doctor around with them when they needed to undergo any treatment or procedure.

It would be nice to see the cheery young face of my nice Polish doctor explaining in a very scientific yet simple to understand manner to the no nothing about pain doctor why I actually require more IV sedation.

I have noticed from my personal experience and after reading multiple  articles about children and people who are chronically ill that have to undergo multiple procedures under general or IV sedation. They  are more prone to nightmares which involve removal of body parts, horrible creatures performing procedures, etc.  I have several dreams that would rate closely whith some of the most horrific movies ever made.  Perhaps that is why I don’t bother to watch the movies, I can see something much more grueosme and life like for no money in my dreams.   Perhaps the pain that we do not supposedly feel during procedures, sedation, altered states such as comas  is stored is displayed in other mediums  such as our dreams.

To sum it up, I am not totally sure that IV terminal sedation is a total painless, uncomfortable way to spend your last days or weeks on Earth.

Obviously, it has benefits for the family because they don’t have to see their loved ones suffering but on the other hand they are unable to talk to them before they die.

That brings one other thing to mind.  When we appear to be not there are we really still there?  It is something I’ve discussed before and I’m sure I will discuss again.

Bye for now