July
1, 2002- I love you, Malky
My
big brother was an amazing human being. Last night I was going through
his 20+ some odd picture albums (all labeled, I might add), and I realized
that he’s probably seen more places and done more things than most of
us will do in a much longer lifetime.
Malcolm was an inspiration and a true champion to many, many people
all over the world. You’ve all heard how amazing he was throughout his
short life, and I’m going to share with you how amazing he was at the
very end.
As
you all know, Malcolm had been ill for many years. Three years ago,
he had his colon removed, and got progressively more ill with primary
sclerosing cholangitis, a rare genetic liver disease, until getting
a liver transplant in December.
Almost
immediately, he had many painful and debilitating complications, and
was admitted to St. Luke’s Hospital for the last time six weeks ago.
His health deteriorated more and more rapidly, but he faced each setback
with enormous determination and tenacity.
In
his long battle with his disease, Malcolm endured all manner of invasive
procedures and indignities. He had three surgeries in one week, his
kidneys failed, and his overall health was so poor that he weighed 110
lbs. (at 6’2"), and was too weak to speak or lift his head. Pain
had been his constant companion for YEARS, but in the last few months
and especially weeks it was agonizing. Even still, he didn’t ask for
painkillers because they slow down the gut, and one of his problems
was that his gut wasn’t moving. Through it all, he never lost his stoicism
or sense of humor. Every time the doctor asked him how he was, he always
answered, "Fine".
On
Friday morning, when the doctor told him he needed another surgery,
for the first time, he answered, "No more surgeries." Two
specialists told us that if he didn’t have surgery, his chances of surviving
were a lot less. We spent many hours convincing him to do it. We told
him, "You¹ve fought so hard for so long in the face of overwhelming
odds. You’ve inspired people all over the world." We read him his
assistant Abby’s letter, which told how seeing Malcolm not let his disease
get him down, helped her with her own health challenges. We told him
that the surgery was just a little bump in the road, and that he would
be on the road to recovery in no time. When they wheeled him away, we
were relieved that he didn’t have to wait.
But
soon after, when we all sat down to dinner in the waiting room, the
surgeon came in, and said, "I have some very bad news for you,
Malcolm is going to die." He explained that Malcolm’s insides were
finished, and there was nothing he could do. He said that if the hadn’t
done the surgery, Malcolm would have died in the next few days in excruciating
pain. He was unwilling to wake Malcolm up, because the pain would be
unbearable, and the prognosis was so poor. Instead, they wheeled Malcolm
back to his room, and allowed us to stay with him.
There
were about ten of us in the room with him. Even though he was kept completely
sedated, we still spoke to him for hours. Gail, his big sister, lovingly
brushed his hair. We told him how much he inspired us. We said, "Malcolm,
you will always be in our hearts. We will love you forever. We will
never forget you." We took turns whispering into his ear. I said,
"Malcolm, I promise to take care of all the people you love. You
don’t have to worry about anything anymore. There is no place you have
to be, and nothing you have to do." Our Dad cried as he said, "Malcolm,
you are the bravest man I’ve ever known."
We
told funny stories, about his mischeviousness, his amazing power of
negotiation, his irresistible charm, and his eternal sense of humor.
We took turns talking about how we would celebrate his life. We imagined
him eating a meal for the first time in six weeks. We imagined him drinking
Coca-Cola, and watching the World Cup on his new wide-screen TV. We
imagined him with the strength to shower, and shave, and dress up in
some of his immaculate clothes. We imagined him in his favorite places
with his favorite people doing his favorite things. We sang him beautiful
songs, and recited nursery rhymes. We held his hand and stroked his
hair. We prayed together. We said, "Malky, we love you so much."
As
dawn approached, we wheeled his bed to the window and sat him up, and
cleaned his glasses and put them on, so he could see the sunrise of
the first day of his new journey. Even after the breathing tube was
removed, and drugs were suppressing his breathing mechanism, he still
continued breathing for another hour. His heart stopped beating at 12
minutes after 7 AM Saturday morning. Mom leaned down to kiss his forehead,
and he took another breath, but the heart monitor was quiet. Then Dad
leaned down to kiss him, and he took another, final breath.
We
cried, and consoled ourselves by knowing the pain and the suffering
that no human should ever have to go through, was finally over. Minutes
later, when Gail kissed him again, there was a blip on the heart monitor.
I kissed his cheek and said, "I’ll see you again, sweet brother"
and there was another blip. We stood there in silence. When I looked
at his chest and it was no longer softly going up and down, I had the
strange sensation that I had just witnessed the falling of a brave and
noble soldier. And that something intangible, and magnificent, and excellent,
was coming to an end.
We
had all been through a very special experience, with a very special
person, that none of us will ever forget. Even though he was sedated,
I know that Malcolm was there with us, and heard every word we said.
The entire experience of that night was so very Malcolm: full of dignity,
and grace, and elegance. We’re so lucky because we had the opportunity
to send him off with love. He died, just like he lived, as a gentleman,
an extraordinary human being, and a TRUE hero. Malcolm, you will always
be in our hearts.
