Sunday, April 09, 2006

Bartering with the Reaper - Part II

images aletta mes 2006

The news of my impending demise was a greater tragedy to some than others. There was the quiet shock where friends and family were just very quiet and careful not to mention the subject, Lest perhaps the mentioning of it might even bring on death itself. Whenever I brought it up there was wincing and the predictable "Please don't talk like that." They had no idea, nor perhaps did they care much, that talking about it was just exactly what I needed to do.

As time passed I learned never to speak the word death as it applied to me in the presence of some members of the family. To the ones I did occasionally mention it it was quickly dismissed with "Oh, if we know you it is a long while off."

Now while all this confidence in my ability to keep the reaper at bay is a compliment, I suppose, of sorts. It diminishes the impact it is having on me on an almost daily basis. How can you not be aware once you've been told you are going to die within the foreseeable future, possibly as soon as today, much like trying to ignore an enormous blister on you heel. It might not be on your mind most of the day, but when it is time to put on your shoes or soak your feet, just try ignoring it.

In psychology we are taught to allow the client to talk about the most awful truths in their lives, because it diminishes the hold that awful truth has on the person. Having counselled the terminally ill myself I know the positive effects it has to be able to talk about the fear of death and more particularly those last moments.

One relative actually stopped visiting me and admitted it was just too depressing. At least she was honest. Not a bit of help, but honest. I imagine she is not the only one. There has been a steep decline in friends and family spending time with me. then too I have my fans, the people in my life who seem to think I can beat this. I find it puts a lot of pressure to bear on living longer. I might want to live longer, but I really would like to do it for other reasons than living up to their expectations. The most prominent among these fans are my kids, now how can I stop trying to beat the reaper when my kids have utter faith in me that I can?

I don't often think how I feel about all this, I am usually to busy trying to tap dance around the sensibilities of others. Death is offensive to most people, if you are mortal then it follows they are too. No-one wants to be mortal, everyone seems in a race to live longer and better through whatever means, so seeing someone quite young about to die raises the spectre of failure. This has become a society of losers and winners. somehow the ideal person is wealthy looks very young, is immensely active and quite possibly will not die until their hundredth or later birthday has passed.

The fear of death is also a profitable enterprise. Large amounts of money are thrown at research to keep death and ageing away. Much less money is thrown at less than well people struggling with their last days. Most probably this is the reason that services for the progressive/terminal diseases make certain demands. To be eligible for most you need it on paper that you will not live more than 6 months. I have to wonder, what if you are taking part in their program and live longer, what then? Other services (therapy) demand that you show progress, otherwise the therapy is discontinued, a slowing of progression is not considered progress.

That is a lot of pressure on the patient, to know you will lose a service that is helping you because you do not fit the rigid criteria. Should you live longer, or fare better than the doctors had expected, doubt is thrown (once again) on the diagnosis, which is either changed, or more testing is warranted. Not fitting in the expected prognosis is treated as a failure. As a patient you feel lousy for failing to match up to the standards of the disease. Odd how not one thinks it is marvellous that you've done better, nor wat to know how you did it so something might be learned from it that might even help someone else.

I try to be brave, I try not to bring up the subject much, but it does eat at me, some days more than others. If I have a bad patch, when my chest feels soggy with edema and my eyes are swollen, when odd pains strike, or when I lose consciousness, or when suddenly I cannot hold things, or control my bodily functions, I feel dread.

So far I've got past all my bad patches and I have progressed very much more slowly than projected, but as time passes, I am ever more tired. Tired of the walking on eggshells over death, tired of fighting to hold on to my health as best I can, tired of putting others at ease, tired of seeing obituaries of people on support groups whom I've come to know of know of, tired of wondering at what point I will become so burdensome as to require warehousing.

I have those days when I want to put aside all thought of it and do as if, as if it is not there. But it is there it cannot be ignored. I have the other kind of day when I feel like giving it up, it is oh, so much work to hang in there and fight.


At 7:44 PM, Blogger Lois said...

Aletta,I was reminded in reading you story/feelings in Bartering with the Reaper of an email within the writers group sent by Edwina Cross(Winnie) in 2002 ...Winnie has an on going serious illness....

We bear burdens

We share, a collective past of
exposed infants screaming on cold
stone hillsides
bound feet
bound breasts
an unstopable,indestructible,mutual strength.

Woman of grace
who bears the honored name of Crone
A name I now thrirst to learn
to fill my bones with
to wreath my hair with
to celebrate,exalt and revel
to learn one day to deserve

Woman of honour
in roughly woven cape and hood
I do not know your burden
I cannot offer to help you carry
I cannot offer you shade
or even a place to rest.

But as my sisters before me
throughout antiquity
I will not let you bear it alone

See the footsteps in the sand
I will walk beside you.

Edwina Peterson Cross (Winnie)

My footsteps walk beside your footsteps ,my hand holds your hand across the sea,mountains and streams....
Lois (muse of the sea) 13.4.06

At 12:09 AM, Blogger Imogen Crest said...

Powerful writing on both counts.


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