It was too late. A guilt complex was now piled
on top of my heavy load. My sister absorbed the information in the
leaflet and wrote:
Hey
there. Thanks for the information, oh my god. How are you feeling about all
this? I really can't imagine what it's like for you. It sounds from your letter that
the doctors are taking good care of you, and you said the prognosis
was positive, and we know that you're strong, but suckety suck suck
suck. I talked to Mom yesterday,
and it went about as well as it could. She just wants to support you in
any way that she can. Love you lots, Holly & Chris.
About
ten days after I sent my original email out informing my siblings
of my disease I received an email from Lewis. The email contained
his email address (which I obviously already had) and phone number,
nothing else. No home address as I had requested. It had no
greeting and was signed with his name only. I looked back at the
email I sent him with the “please and thank you”. It felt like I
was on my knees in front of my enemy begging him to spare my life.
I was sick to my stomach that I had to be subjected to this. I
wrote to my sister for help to cope with these feelings.
“I'm
struggling being in this position with Lewis. The please and thank
you I had to send felt really degrading.” She wrote: “I did wonder
how that would feel. I would
struggle as well. Look at it
this way, here’s his chance to be a good brother.”
On
February 2nd my sister allayed some of my guilt about
asking her to be a donor.
Chris saw the doctor yesterday for a few minor
things, and asked him about the tissue typing and bone marrow
extraction – I’m making up my own names for everything. He said they’ve made great
strides over the years in both the extraction and the transplant. From what he told Chris, our end
here sounds pretty simple. I was suddenly incredibly cheered by
that one sentence: “He said they’ve made great strides over the
years in both the extraction and the transplant.” I didn’t know why
it cheered me so much, but it did and it was just the encouragement
I needed. I knew she would do whatever
she had to do to help me which was such a lovely feeling. I was
very grateful and crossed my fingers that she was the match! Another email from my sister cheered me further:
Hi
there. Any news on your actual (hospital) date yet? I would
be nervous too. I really do think you’ll do well; you’re
mentally and physically strong. Some numbers of folks do this
every year successfully, so really, why shouldn’t you be one of them?
(Mom says you’re having an autogeneric transplant.) If
you do lose your hair, I think you should consider either wearing a
Cher wig, long, straight & black, or affecting a pirate look –
maybe without the eye patch, but definitely with the parrot. I replied:
You gave me a good laugh. I
had been thinking about the "do I wear a wig or hide under the
bed for three months" sort of thing so I appreciate any good
ideas! I will let you know any firm dates when I do. Love you
My sister became the daily
liaison between my mother and myself. My mother did not have a
computer and although I was phoning her once a month, my sister was
relaying all the email conversations. I appreciated her doing this and
worried that she was getting the brunt of the emotion from both
directions.
During my 2011 trip to
America, I stayed with Ben for a few days. He has progressive
multiple sclerosis and is wheelchair bound. As the years go by he
gets increasingly weaker. On this trip I noticed his hands had
begun to be affected. He was no longer able to do up his buttons or
use a pen. When I was back in New Zealand and had been diagnosed,
we began to skype regularly. We now talked on a totally different
level. We still talked about children, politics and weather. We still
laughed a lot. But instead of being one healthy person talking to
an invalid, we were both in the same pile of shit. We talked about
the end of our lives. We compared notes about where we wanted to be
when the end came. We talked about how we wanted it to happen and
how scared we were that it might be lingering and not on our own
terms. There was no pity, no need for words of comfort. We both
knew we were in a race to the finish line. Unknown to me, Ben
stopped taking his interferon as soon as he knew he could be a
candidate as my stem cell donor. (Interferon is an immune booster
which helps slow the progression of multiple sclerosis). He was
worried the drug might interfere with the donor process. I worried
for his health and was on tenterhooks about who
would end up being my donor buddy. On May 10th I got
great news. The haematology nurse emailed my sister and she
forwarded it to me:
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Hi, Holly you ARE a match for your
sister.
My sister, bless her, was so
excited she skyped me and was laughing and crying. She was delighted
and so was I. It was a great moment. I didn’t have to worry about Ben’s
choice between his own health and mine, and I didn’t have to have any
more to do with my older brother. When my sister was confirmed as a
match, my mother told Lewis not to even bother getting tissue typed. To
my understanding he never did. He never contacted me again after that
brief email with his phone number in it. He never once asked how I was.
In spite of the relief of not having
my older brother turn out to be my donor, and in spite of my adamant
stance of never wanting to hear from my abuser again, there was a tiny
glimmer of hope that he would take the opportunity of my demise to make
amends. Just like my sister said: Look at it this way, here’s his
chance to be a good brother. It was that odd in-built human optimism that told us
everyone had a good person inside them trying to get out. Batman’s arch
enemy, with a hit on the head, turned from King Tut to a mild-mannered
history professor. The soul of a saint might be deeply buried because
of a genetic aberration or a blunder of nature but it was still there.
It just needed the right switch to turn it on. The potential death of a
sibling should have lit up his conscience like a firestorm. I actually
had a small but compelling expectation that his soul would suddenly
burst like a blister and out would pour all of the nurturing love and
compassion that had been missing for a lifetime. Instead my brother
chose to ignore me and my predicament. He was never going to be sorry
for what he did to me. The essence of affection and piety within him
remained untouchable; maybe it even entombed itself deeper. I wanted to
stop being his victim but it would never end. I had to tell myself it didn’t matter. I had to
seal him in the deep, dark corner of my brain that he crawled out of. I
had to concentrate on feeling lucky it wasn’t him that was the match.
Meanwhile I saw the toll my disease took on my
sister. In June she sent me a photo of herself and her husband in
knight’s chainmail at some place they stopped on a holiday. The
chainmail covered their heads as well as torso. I wrote her a cheerful
email saying I had lost most of my hair and maybe I should go there and
get suited up. The email I got back was a surprise:
Oh no,
not your lovely curls. I would be BULLSHIT at cancer. I
would want to F*** cancer up.
I had
never heard my sister swear like that before. There was so much anger
in it. Whenever we skyped it was loving and sad. She had tears
sometimes but mostly we laughed and comforted each other. I never saw
this simmering storm that was obviously just below the surface. I now
saw what my disease was doing to her. I had given her an emotional
nightmare to deal with. I felt bad for telling her about my bald head.
She was enraged. I promised myself not to tell her anything else like
that.
In March, less than two months
after I wrote the email telling my family about my disease, Dr Comfort
told me I would be having an autologous transplant. My own stem cells
would be removed and re-infused so I had no need of a donor at this
stage. It was a relief in one way as the logistics of getting my
sister’s stem cells from America to New Zealand had not been worked
out. But mostly it angered me. For two months I had been an emotional
wreck and put my family through hell for what seemed to be no reason.
Holly and Ben had raced to get tissue-typed on my behalf. Ben had
stopped his interferon in case I needed him as a donor. I had given Lewis
an opportunity to make amends and was angry all over again that he
could be so selfish and uncaring. I had dredged up all the old hurt and
it made me ache like a punch in the throat. I wanted to demand the
allogeneic transplant because planning for it had disrupted my life so
much that I felt cheated that it wouldn’t happen.
In July I had the autologous
transplant. Then it was a waiting game. If my cancer returned the
allogeneic transplant was still an option. Now that I had a sibling
that matched, it could be a good option. I just had to wait and see.
A year after my diagnosis and
eleven months after sending him an email, I heard nothing from Lewis or
his wife. Not a word. The process of returning him to oblivion is
ongoing but I will get there.
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