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
I am dying 