Posted by Elaine (172.152.249.81) on August 07, 2000 at 11:06:05:
DJ I have been working on putting a book together for you. It was to be given to you at the convention, but due to a problem with the printer, I was unable to get it to you on time. The book has letters from all over the world to you letters from people who YOU made a difference in their life! I am sorry that I was not able to get it to you on time. It will be shipped to you just as soon as I get it back from the printers. I give you the first page of the book for all to read!
Below is the first page of your book! It was written by your mom on 12/3/99
Dear DJ...
If something happens to prevent me from being with you today, I am
going to be very disappointed. I so very much want to be present to see the
surprise on your face when you realize what's about to take place and to be
the first to offer you Kleenex when you can no longer hold back the tears.
In your late teens when you started having headaches, you were
already living away from home. What I understood was that periodically you
suffered excruciating pain with something the doctors were calling cluster
headaches. When the pain became unbearable, you would get someone to drive
you to the emergency room where the doctor had left instructions to give you
a shot "first" and ask administrative questions later. That notation was
made to your medical records after you were quoted as saying to an over
zealous admitting clerk, "If you don't quit asking me questions and give me
something to help with the pain, you're not going to have a typewriter left
to type on!" Anyone that knew you understood you would only make a statement
like that if you were experiencing extreme duress.
Last year when I was visiting in your home, you were in the active
stages of a cycle. Do you remember? I woke up in the middle of the night
thinking I had left the light on upstairs. With no way of knowing what I was
actually going to find, I got up from my bed, climbed the stairs and opened
the door to the spare room. It took me a few seconds to understand what was
going on. I had never seen you like that before. You were sitting on the
floor in the far corner of the room with your back against the wall. Your
legs were crossed in front of you, and you were wearing a mask that made you
look like a creature from a scary movie. Then I noticed the oxygen tank
lying beside you and realized you were in pain. Slowly, you lifted your head
and looked my direction. Neither one of us spoke. It finally occurred to me
that a quiet exit to afford you some privacy was probably what you needed
from me the most. I think anyone that has witnessed a friend or loved one
deal with such pain must have experienced feelings of complete and absolute
helplessness similar to what I experienced that morning with you.
Today, even with the heightened research into the family of severe
headaches, the medical community as a whole remains baffled and/or in
controversy as to the causes and most effective treatment for the cluster
headache. But, thanks to you, DJ, those that are forced to suffer the
physical and emotional consequences of them, will never again have to do so
feeling alone. For at a time when you were most in need of comfort yourself,
and without knowing if there would be any response, you made a decision to
reach beyond that pain to others.
As it turned out, the response was overwhelming. People from virtually
all walks of life and every part of the world demonstrated they were eager to
share their private, painful experiences with CH. Many are present today to
help you celebrate the First Annual Convention of Cluster Headache Sufferers,
and many unable to attend have sent letters of testimony. Essentially,
everyone in their own way is trying to say the same thing, and that is …
"Thank you for caring, DJ. Thank you from the bottom of our hearts."
I can only imagine the thoughts and feelings that must be going
through your mind at this very moment. As for myself, I want to tell you
that I love you very much. You are a generous, good and decent man. The
respect and admiration I have for you, both as a son, and a humanitarian make
me swell with pride. Enjoy the day, DJ. You have earned every minute of it!
All my love,
Mom