Archive for July, 2010

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 »

Ideas of Peace, July 4

2010-07-04

The Dartmouth lads at Powerline have again re-posted the excerpt from Calvin Coolidge’s speech of July 4, 1926.

About the Declaration there is a finality that is exceedingly restful. It is often asserted that the world has made a great deal of progress since 1776, that we have had new thoughts and new experiences which have given us a great advance over the people of that day, and that we may therefore very well discard their conclusions for something more modern. But that reasoning can not be applied to this great charter. If all men are created equal, that is final. If they are endowed with inalienable rights, that is final. If governments derive their just powers from the consent of the governed, that is final. No advance, no progress can be made beyond these propositions. If anyone wishes to deny their truth or their soundness, the only direction in which he can proceed historically is not forward, but backward toward the time when there was no equality, no rights of the individual, no rule of the people. Those who wish to proceed in that direction can not lay claim to progress. They are reactionary. Their ideas are not more modern, but more ancient, than those of the Revolutionary fathers.

These are truly ideas of peace, upon which public lives and more nations than ours can be built.

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Posted in governmental regulations, Politics | 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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Posted in Bhakti, FTD, Living with Illness, Medical Mistakes, Physicians, Treatment | 2 Comments »