THE LONELY PATIENT

My column that ran in the July 26 edition of the Oklahoman  has been placed on the front page of this blog.  I wrote about the loneliness of terminal cancer patients – not because friends and family do not care, but because friends and family are overwhelmed with their own feelings and reactions to an impending death and the tendency of the patient will begin to hide their thoughts and feelings in order to make everyone else feel better. 

In response to that column, my friend Jan who has also been given the prognosis ”terminal”  – wrote - and has given me permission to share her thoughts with you.

FROM JAN 

This was great.  I loved the 4th paragraph.  Relationships…..begin to change and will keep changing.   That is life. 

I think the thing that has struck me  lately is that when I am thinking about relationships changing I think of that period of unease and resistance to change and that there is an evolution of change.  That change usually evolves into a different relationship. 

But when I think that I may not have time to see the evolution, I am sad and I want the relationship to remain stable and not go through that painful rebirth period because I may not have enough time to see the new relationship and the relationship will end midstream at a bad place. 

Then it struck me that death really doesn’t end the relationship.  But that you can let fear paralyze your willingness to embrace change.  And if life is change, you can choose to stop living before you die.

I’m so glad to see that section on not looking sick and a secret identity. 
That’s the irony…..a terminal patient wants to still be treated as who they are and yet give up so much of who they are in an attempt to hold on to who they used to be before.

I remember that Jim in one of his poems talked about needing to have people still have hope.  I think there is a real connection between wanting to have hope ourselves and needing to see that hope in other people’s eyes. 

The isolation comes in when we know we aren’t getting an honest response because we feel the need to withhold the despair we sometimes feel.  What a mess.

The part that touched me the most were the two lines about lack of praise
for expression of fear, guilt and sadness.  I think  families are made to feel that while the patient may have some latitude to express those
feelings, family members are perceived as self-centered or somehow not
entitled to those feelings. 

My son and I talk a lot about that and how he feels guilty about his reactions sometimes because any problem less than terminal illness seems self-indulgent when someone you love is facing death. 

You know I think Jim has done such a good thing by doing this and I hope he won’t give it up.  And I think his family has so much to contribute by giving their perspective, but I can certainly understand why they want to stop. 

It’s too bad because they are in the position to be a voice for the other
dimension of this, but maybe they will be able to do it someday when they’ve had a chance to reflect instead of doing a blow-by-blow as it happens.  Jan

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