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GOODBYE AMELIA On the morning of Exactly 284 days
after the operation, on I’d already
dropped Judith, my partner, at the St. Lawrence Market to buy halibut for
dinner. I pulled into Amelia’s street and parked the car half a block
from her house. It was ten minutes to nine. I was early. Would Amelia be up?
I saw a firetruck and police car parked near her
house. I looked around but I didn’t see a fire. I got out of the car. Then I heard a
woman’s voice. A terrible crying and screaming voice. I kept walking. Then
I recognized the voice and I began to run, and as soon as I came to Amelia’s
house I saw her mother Alison in front, crying and screaming, collapsed in
the arms of a neighbour and with such a horrible
tortured expression on her face. I knew what had happened. I knew that Amelia
was dead. “My baby is
gone,” she said. “My baby is gone.” There was a
policeman on the front porch. I explained who I was and said I would go and
get Alison’s mom, Judith, and that was she was Amelia’s grand-mother
and I was her grand-father. Then I ran back to the car and started the engine
and drove back to the market, cursing every red light, driving down
University very quickly, across There were
hundreds of people in the market. I tried to scan every face. Where was
Judith? I cursed the idiots who blocked my path. I ran across Front and into
the north market and then back across Front into the south market, still
scanning every face, like a cop searching for a killer in a crowd. And then I
saw Judith. I ran to her and grabbed her arm. “Don’t argue, don’t
say anything, just come with me,” I said. I dragged her
along. We knocked people over. She got angry. Finally we were
outside in the sunshine. I took her in my arms and held her and said, “Amelia
is dead.” We drove back and
Judith went into the house to comfort her daughter. Other people had arrived.
Philip, Amelia’s dad, and his wife Erica. David, Amelia’s uncle. They
explained that the coroner was on her way. They explained that Alison had
woken up to the sound of Amelia’s alarm. When the alarm kept ringing,
she went up to Amelia’s bedroom on the second floor to investigate and
found her dead in bed. The rest of the
day is a blur. I remember Alison
crying in my arms. “This is wrong,” she said. “This is
completely wrong. This is bullshit.” All I could say
was, “We did everything we could, didn’t we? We did everything we
could for her.” I was crying too. For a time after the transplant, Amelia
seemed to be doing okay. The new kidney was working fine. But by September
the symptoms that had started a year earlier, before the operation, had come
back. She was nauseous and vomiting. There were new problems and new symptoms:
dizziness, slurred speech, speech, fainting, memory
lapses. All through September and October and November she was in and out of
emergency at At one point she was
in intensive care suffering from septic shock. There were no beds
for her in the transplant unit so she spent a lot of time in emergency. Emergency
wards are designed for people with broken arms and bleeding heads, not for
chronically ill patients like Amelia. The doctors couldn’t pinpoint the
cause of her problems. We were all puzzled and alarmed. She’d recovered
quickly after the first transplant, back in 1997. Why was this round so much
harder? These were very
difficult months for everyone. But Amelia never gave up. I’d go up to
the hospital after work and visit her. She always greeted me with a big
smile, followed by a detailed description of her plan for getting out of the
hospital and back home again. She never despaired, she never raged at the
universe. The only time I saw her cry was the afternoon she’d been
kicked out of her room in emergency and forced to lie on a gurney in the hall
for eight hours. I held her hand, and she cried and said, “I just want
to go home. Please.” She was home most of
December. She came to our house for Christmas dinner and seemed better. She
went back to work in January, got fired when she missed too many days of
work, and promptly started looking for another job. Through January and
February and March she still seemed better. She went looking at apartments
and continued the job search. Judith no longer phoned her every day. We
relaxed a bit, thinking and hoping that finally the worst was over for Amelia. But she must have
been far sicker than she appeared. The coroner’s report said the
autopsy revealed no visible cause of death. Further tests will take three
months and may tell us whether her heart gave out sometime during the night
of April 4, or whether Henoch-Schonlein Purpura, the chronic disease that caused the kidney
failure in the first place, had attacked and weakened other parts of her body.
HSP is a type of vasculitis which destroys the
functioning of blood vessels and therefore no part of the body is immune or
safe from it. We held a memorial service for Amelia on Seven of us spoke.
We all cried. We all remembered Amelia with love, affection, humour and sadness. ”I learned openess,
optimism, and where to get the best sushi and handbags,“
Alison said. “I learned that her generosity of spirit inspired the outpouring
of concern and kindness everyone has shown me over the past week – the
same kind of care and kindness Amelia possessed.” Philip, who adopted
Amelia while he was living with Alison, made us laugh by admitting that “Grumpy
ironists both, Alison and I would actually have been more at home with a
bitter child.” We laughed again when her friends Marc and Kate reminded
us that Amelia still owned a plush killer whale named Frank ‘n’ Bob
that Judith had bought her in We told different
stories. I tried to explain how because of the transplant I got to spend time
with Amelia and get to know her and how she got to know me. “It’s
easy enough to say you love someone in your family,” I said. “What’s
rarer is to say you honestly like them. I liked Amelia. I’ve never met
anyone as appreciative and thoughtful.” And each of us, in our own way, stated
the obvious: that Amelia was one
of the bravest people we had ever met. And that she was, in the words of her
dad, “the most insanely positive person I’ll ever know.” After Amelia’s death a few people
asked me whether I regretted donating my kidney to her. This was a tactless
question, at best, and at worst a rude implication that what I did last June
was futile. People sometimes say tactless things when they don’t know
what to say and death renders many people speechless and some people stupid.
(Trust me, all that is required is “I’m sorry for your loss.”).
It is, of course, a terrible terrible thing to
outlive your grandchild. Some of you may
be wondering whether I regret my decision to donate a kidney, I will repeat
my answer. Please pay careful attention. I believe with all
my heart and soul that if donating a kidney to Amelia made her life better,
easier, less painful, more hopeful for even one day out of those 284, then it
was worth it. Many people mistook me for a hero last year. I was no hero. I
was just the right person at the right time doing the right thing. Amelia was
the true hero for putting up with so much and never losing hope. She was
always hoping for a happy ending. Amelia and Stephen
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