Thank you, Bobby. 

I think one of the most difficult things in life is to watch those we love suffer. Sometimes it is the denial  before the grief that prevents us from being there. Sometimes it is an unwanted reminder of our own vulnerability and mortality. How wonderful you could be there for Paul. You were a good friend. I'm sorry for your loss.

Yvonne
  

>>> [log in to unmask] 05/26/00 11:13AM >>>
You show great courage Yvonne. I have had a few friends die of cancer and I
must admit I ran and did some of the thingsyou and Betty mentioned and now
I am asheamed. My best friend, Paul, died of liver cancer, brought on by
Hepatitis C brrought on by IV drug use. When wrote a lot together and made
many people laugh. We wrote a paly together while he died. I acted in that
damn play and I hated it. But my memories of Paul are good ones. But it is
terrifying to see your best friend slowly slip away. I have not been really
creative since then except for CP PJ Man.

Bobby



>You're not alone, Betty. I was naive too in our "Before Time". When the
>boys were diagnosed and everything in our lives started to crumble,
>friends and family with whom we had been very close suddenly stopped
>calling or returning our calls. I didn't see this coming. After all, we
>had been there for others so assumed they would be there for us. In our
>sleep-deprived, shell-shocked, grief-ridden state it took us a while to
>catch on, so we actually called people to beg for some help - minimal
>response...
>
>Even my mother, who is the boys' only surviving grandparent, when she came
>to help (lives on the East Coast) really only helped with Robert (NDA).
>She somewhat accepted Anthony later on but only ever held Joseph a few
>times - and then mostly just to have pictures taken. She didn't even come
>to Joey's funeral. We rarely speak now and she is no longer welcome in our
>home.
>
>When the fog cleared somewhat we found that the best help came from people
>who were actually acquaintances or even strangers before. It is quite
>amazing though. The friends that populate our lives now are ALWAYS there
>for us. There are a few from the "Before Time" but most are not. But you
>know what? Those who were there for us in the disability days have stayed
>with us through the loss of Joey. I expected another mass exodus of people
>again and it didn't happen. If anything the friendship bonds were
>strengthened. Mark and I are truly blessed in so many ways.
>
>Didn't mean to ramble on...
>
>I wish your Mom peace and comfort. My thoughts and prayers are with you
>both during this difficult time. I know Ann must be a special lady to have
>raised such a wonderful and
>compassionate woman, Betty. Thank you again for your support and
>encouragement.
>
>Yvonne
>
>Mommy to 3 year-old triplets:
>Robert (NDA), Anthony (mod. spastic quad CP)
>and our angel, Joseph {April 14 /97 - Dec. 31/ 98}
>(cerebral atrophy, sev. CP, CVI, Infantile spasms, spina bifida, BPD...)
>
>>>> [log in to unmask] 05/26/00 02:01AM >>>
>In a message dated 05/25/2000 11:53:24 PM Eastern Daylight Time,
>[log in to unmask] writes:
>
><< Perhaps your Mom will move through her fear in her own way and time.
>
>She will, I think.  My Mom is a strong woman.
>
> The response of  family, friends, colleagues, and community during severe
> illness and approaching death sharpens the coda comprising human behavior
> and mystery.
>
>Indeed.  I spend days pondering these things.
>
> Betty?  Just what were and are your expectations?
>  >>
>
>Steve, before my disability I operated under the naive assumption that most
>people loved one another the way I love others myself.  I grew up near a
>cousin, Panny Clark, who had a debilitating MS progression starting in her
>early 20s.  She lived in a nursing home not far from us -- just a couple of
>miles.
>
>My parents didn't wait for holidays or special occasions to drop by for
>exactly three minutes for the "obligatory visit to the family gimp."  They
>visited with her because they loved her and they enjoyed a mutually
>beneficial family relationship.
>
>When I was older and could drive myself, I would drop in for visits on my
>own.  Panny and I would just hang our.  Sometimes we included other people
>who lived there; sometimes we just shared our own company.  She was a dynamic
>woman and I loved her very much.  I grew up with the idea that relationships
>continue, disabilities notwithstanding.  This notion was imprinted on my
>heart.  Panny is still part of my heart, even though she has been gone for a
>number of years.
>
>She mentored me, she loved me, and she acted in a sisterly way, especially
>after my own sister died.  She was about twenty years my senior, so there was
>parenting as well.  It never occurred to me that other people didn't visit
>her, except for my parents and her parents.  She never spoke of these things
>and I didn't realize this until the past couple of years.  I think of her a
>lot now.
>
>I just didn't know better Steve.  Losing my friends was the shock of my life
>-- the shock of my life.  How naive I was!  I didn't know that people did
>this.
>
>Of course, that shock is tempered now.  I have come to realize that I can
>love these people in spite of their ignorance.  They really don't know what
>they've done.  I have altered my expectations dramatically as a result of
>this first experience in my disability life.  I have a difficult time
>trusting anyone.  That may not be uncommon, even in nondisabled circles, but
>my first assumption when I meet people now is that I should not get close.  I
>am extremely guarded.
>
>With regard to my Mother, I expect that she will not be shattered as I was.
>She has been through the divorce of her first husband, and the subsequent
>loss of the friends that they knew.  I've been through that myself.  She lost
>her first-born daughter, my sister, through suicide.  That is the most
>horrible and most agonizing thing that can ever happen to a parent.  Losing
>friends over cancer will not compare in her mind.  She has already suffered
>the loss of losses, and she has never been the same.
>
>I just hate to see that her friends have not been more attentive.  She has
>nearly broken her back over the years on behalf of her DAR chapter.  Everyone
>in that chapter knows her well -- everyone.  I honestly thought that at least
>some of them would have responded to her illness with good conscience.
>
>In short, I can be terribly naive about these things.  I am learning though.
>
>
>Betty