One thing that is so thrilling about this Listserv is that people respond
quickly to my thoughts. It's like having a piece published and reviewed
right away. It is extremely comforting to know that my experiences and
impressions touch you, and in some way validate your experience. I
remember once a few months ago speaking with one of my teaching colleagues
and being told my feelings of worthlessness were "not natural". That was a
moment of despair for me. His refusal to admit my experiences made me feel
isolated and abandoned. But in time I turned to other outlets for my
feelings - a place where I don't feel so alienated. Here are the other
postings I was referring to. My problem is I keep forgetting to sign
anything so everyone just calls me "Rager". My first name is Barb.
*******************************************8
I have been reading your messages with great interest since I joined
this group 3 days ago. Perhaps it is too early in my association to send
you a message before I really get a feel for the appropriate types of
responses. However, I've had a change in my attitude and I would like to
talk about it.
I am 51 yrs. old, a high school English teacher, married for 25 yrs.
with two sons. I was diagnosed in April of '96 and spent the next three
months unable to speak the "P" word. I was in such shock and such denial, I
could not even bear to think about the implications of this diagnosis.
Sometime in August I was able to tell my boys who were 21 and 16. They
cried and I cried - it was quite a family howl actually.
Then I found a neurologist who not only explained everything to me
quietly and patiently, she also spent time with me in her office letting me
hold her hand and cry. I really needed a counsellor, someone who could help
me through the vast wasteland of grief over the loss of my health. However
there was no one, truly. I found a psychiatrist who refused to touch me,
even to shake hands. I found a grief counsellor who reasoned away all
emotions. I went to a psychotherapist whose shattering insight into my
suffering was that I used the word "trash" twice in my litany of problems.
So I spent a long time sinking into depression and believing that I had
brought a great calamity to my precious family, had no self worth whatever,
and had absolutely no hope for any kind of a fulfilling future. I accepted
that there was no one outside my family and my growing circle of loyal
friends who could give me any objectivity or direction at all.
I have lived the last two years of my life with a rock in my stomach,
never being really happy. Getting by, doing a terrific job teaching,
finding a lot of success there, but coming home to a home where in spite of
the support, still burying myself under the burden of Parrkinson's and
whatever I was figuring was the Parkinson's "identity".
I started taking medication: requip, effexor for the depression,
amytriptaline for sleeping. And just went on.
Things started to change when I picked up a book by Bernie Siegle, Love
Medicine and Miracles. He's received a lot of criticism for this due to one
of his tennants being: we attract the diseases we get. Whether or not I buy
this philosophy, it is still interesting to consider. But his other main
message was to love yourself. And this he went on with at great lengths.
Then, I thought that since I was grieving a great loss in my life, I
should look into the work of Elizabeth Kubler-Ross, On Death and Dying.
Much of her ground breaking points have found their way into the main stream
culture. But it was still absorbing.
And everyone, all self help gurus, relate back to the original oracle of
the concept that we do, under all circumstances, control our attitude -
Viktor Frankl's Man's Search for Meaning. This was a difficult read. He
exaggerates nothing about the holocaust. In plain unembellished english he
defines the power of the human spirit to transcend and transform any
situation which is beyond our control.
Recently I've stumbled upon Joan Bolen's Close to the Bone. A
psychiatrist, she links the decent of the process of accepting chronic
illness to mythology. In this way she gives me a visual image to see the
whole picture and not just the immediate pain, of what I am experiencing.
While in the office of my doctor the other day, I asked her to show me
a picture of exacly where in my brain this dysfunction was occuring. She
showed me a photo of a skull cut away just above the eyes and pointed to the
mid brain with her pencil. For the first time in 2 yrs, I felt a
dissociation from the disease. A separateness between this horrible "thing"
and me. I'm beginning to believe that this disease is not me, that I still
have worth, the right to dream, to hope, a future. Perhaps I was primed for
this moment, with all the self help I'd been trying to do. I don't know, I
feel good about myself. I hope it lasts.
And one more thing. She suggested that I start taking an anti oxidant
called CoEnzyme Q10. Not available through prescription in Canada, but you
can buy it in Canada over the counter at health food stores. (!) It is
available through prescription in the States. There is no way that this
capsule is creating the positive change in attitude that I'm experiencing.
But it's definitely not hurting.
The rock in my stomach is not completely gone. But from time to time
lately, I've felt it going. Barb
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Dear Gail:
Accepting the unacceptable in your life is a process that takes exactly
as long as the individual needs - not more or less time than whatever is
necessary for the individual to work through the stages of grieving and
acceptance, and then to work through them all again and again. Your sister
has to come to terms with this in her own way. The process of acceptance
may often seem like one step forward, two steps back, but whatever it is, it
is her process. There will be some denial, some grieving, some anger, some
bargaining, and then acceptance of whatever is possible for her to accept at
that time. She may seem "stuck" at any point along the passage, but she is
actually moving. Then the process will begin again.
In accepting the unacceptable (and this could be anything from the loss
of a job to the death of a child, to the diagnosis of Parkinson's) we feel a
lot of unacceptable feelings:
fear of the future, shame for having done this to our families, a
questioning of our faith in a loving creator - lots of things we don't ever
want to feel. A lot of these feelings are buried deeply and only patience
and unconditional love will enable them to come to the surface.
Your concern for your sister is admirable. She really needs the love
and support of family members. Creating a safe, patient and loving "nest"
for her will do much to help her build bridges of confidence over the
despair she may be feeling. But essentially she has to take the lead in
deciding what kind of help she needs, or wants at this and at any other
time. She has the net, she has you. She knows where to go for support if
she wants to, but she herself must decide for herself whether she wants to
go there or not.
One of the biggest challenges she is facing is the loss of control, an
overwhelming sense of helplessness over things such as health, dreams, plans
which non chronic sufferers take for granted. You can help her greatly by
reinforcing the areas over which she still has control. Deciding what kind
of support she wants or needs, is one of those areas. If you push her to a
support group when she does not want to go, you are taking away one of the
few things she can still control - who she shares herself with, when and
why.
Your sister has Parkinson's Disease. This has impacted on your life
through your love and concern for her. You are facing a sense of
helplessness of your own which you have to come to terms with. You have
suffering of your own to do in this situation. Because you love her, there
will be times when the most you can do for her is stay with her, sit with
her, while she expresses her suffering. This is an incredibly difficult
task. If you focus on expanding your own capacity to experience
helplessness and the suffering that accompanies love, then you will be of
great help to her indeed.
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Dear Beth
Thank you for your response. I felt quite validated by it. I've been
doing massive amounts of reading, particularly in the self help "I'll not be
victimized by this" genre. I, too, consulted a homeopath whom I found
ineffective and tiresome. I've got a naturopath here whom I may consult
once the summer gives me a little time to myself (I'm a high school
teacher).
But what prompts this note to you is that recently I've been reading
Norman Cousins' Anatomy of an Illness. He spends a whole chapter on
placebos. While the book was published in 1979, he claims that even then,
20 yrs. ago, placebos and in particular the unexplored but nonetheless vast
impact the mind has on the body - on even incurable malignancies (!) - is
significant. Basically his point is that we all have a healing and
restorative power within us. Placebos awaken that power, they become the
"doctor inside". (Sorry if I'm sounding a little weird, a little too
alternative) But this is an area which I find fascinating.
I'm wondering if you could itemize some of the vitamins, herbs etc. you
are taking for me. I believe that as long as we are doing ourselves no
harm, that what we do can have a dramatic effect on our potential to self
heal. Barb Rager
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...Marilyn. When I found this group of people, I knew I had found a source
of honest, and informed caring individuals. Although I am a relatively new
member, I am constantly moved by the determination and committment the
people who contribute to this service have towards each other and towards
finding safer, saner, and more effective ways to deal with this disease.
Regarding your husband, and your deep concern for his welfare. One of
the first things you learn about this uninvited guest in our bodies is how
specifically unique it is to each of its "hosts". We can only report on
our own particular experiences. Whether or not these tales correspond to
similar occurences in others is purely a matter of chance. This applies to
medication, to the strength of it, to the combination in which it is given,
and to its effective duration. Different for everybody, I'm sorry to say.
The single most important piece of advice I've been given (age 51,
diagnosed April 1996) is that my attitude is crucial to my own experience of
this thing. I picked up Norman Cousins' book "Anatomy of an Illness".
Although it was written in 1979, it has much to teach (me) in the 1990's.
For example, the feeling I get from your phrasing is that you are more or
less resigned to dementia accompanying Parkinson's. This is not my
understanding. From my research the % of PD patients who may develop
dementia is exactly the same % of people without PD who develop dementia.
In other words, PD is not the determining factor in the development of
dementia. (I am willing to be corrected on this if I am wrong.)
So I think we really have to look hard at what we tell ourselves about
this thing, the development of the symptoms, the overall prognosis. Self
affirmations, focusing on the positive, refusing to accept some doctor's
prediction if it sounds limiting and if it denies the innate regenerative
power of the body.
My personal choice has been to study and research alternate healing
principles as well as the standard traditional ones. As your husband's
primary care giver, you are a fundamental part of the development of his
attitude. Norman Cousins says to smile often, focus on laughter, find the
strand of the positive, the optimistic, the assurance of health. Even if
you think this is silly and "unrealistic", it certainly beats the
alternative which is to reinforce the negative, the fearful and the
sorrowful. If those emotions have a depressing effect on the immune system
(and studies have shown that they in fact do) then the cheerful, the up
lifting, the joyful may very well affect the strengthening of the immune
system and the restorative healing power of the body.
What have we got to lose?
And, of course, some of your husband's depression might be coming from
his very real grief over what may seem like the loss of his future, his
dreams and plans, not to mention his health. You, also, have some grieving
to do in that regard too. Don't be afraid of it. Let it express itself.
It is absolutely unfair that this has happened to you both. Don't be afraid
to feel your own pain and anger. Sometimes it is very helpful to do this
with a grief counsellor, together, where even your guilt or his shame may be
expressed safely.
(As an aside, during my two year struggle with this beast, I have found
only one person who even suggested that the "shame" I felt was in any way
normal. By accepting that I felt this way, that I needed to apologise to my
husband etc, for the beast that "I brought into our family" was I able to
let it go, to accept it as a stage of the acceptance process - for me- and
nothing more.)
To the other list members: I have a friend in CA who is a fire fighter.
He has worked for a number of years fighting forest fires. He has been
living with PD for about 2 or 3 yrs. Recently he has felt the need to
contact other fire fighters (or "flame throwers" as he calls them) who may
have PD in order to 1. make their acquaintance and 2. gather information
from them on how they are coping with their PD. He would like to put these
stories together into a book. If anyone has a name or email address of a
fire fighter with PD, please send it to me and I'll pass it along to him.
Please write again Marilyn. There are others in this group who can give
you much more substantial and factual information than I can. My personal
despair and struggle has centered around the emotional stages of acceptance.
I'm doing a lot better now than ever I was before. I still hate this thing.
But it's not the end of my world.
****************************************
Some of these may be confusing without seeing the letters I'm respondingto.
But I'm glad to send them if they will help. Write me again if you ever
want just to talk.
Barb
