It’s hard to come up with words that really describe my brother Nick. It’s equally difficult to believe that he is no longer physically with us. After spending my lifetime with him, and then in the last 5 days, taking in hundreds of pages of his fantastic writings, sketchbooks of his colorful drawings, and perhaps a thousand pictures of him – he feels more present right now with all of us than ever. It is impossible for me at this time, and probably for all of us, to imagine going forward without Nick to share in this journey.
I found a birthday card written to Nick by someone very
special to him, and this card was my inspiration to speak about my brother
today – [read card].
My brother was the chronicler of our youth. He had the ability to remember everything we
did, from playing in the sand in the backyard, to recording pretend interviews
in the kitchen, all of our trips, our weekends up skiing with dad or camping
with Grandma and Grandpa. I would sit and marvel at the little details that he
remembered about seemingly insignificant events. And sometimes it wasn’t until he recapped
certain moments, and reinvented them in a way, that I realized how funny
something actually was or how odd, or how silly… and indeed how memorable.
When we were teenagers, Nick would get upset with me for not
participating in all of our family functions as a teenager. For even at that age, it was hugely important
for Nick to have all of us together regularly, building that strong family bond
and making those great memories that Nick kept safely and lovingly catalogued
in his own memory bank.
Nick’s memory was truly amazing. When we were small, we had a very difficult
and large book of mazes. In the front of
it, was a 3 page single spaced preface, which was written entirely in nonsense
words, with phrases like: gvona itookna jew nabasana pilat, instead of in English. Nick memorized the entire thing. It was written by a famous smart person, like
Stephen Hawking… but of course – I can’t actually remember who wrote it. But, Nick would know.
Nick was an amazing speller.
A few words I remember him learning and spelling in 3rd grade
were:
antidisestablishmentarianism and
supercalifragilisticexpialidocious
They are long words and that was pretty impressive, but Nick
didn’t only spell them forward, he spelled them backwards too.
His love of words and language led him to become a writer
early on. He crafted poems lyrically,
with wonderful rhymes and rhythms and made it seem effortless. He was not a struggler for words, they just
dropped from his clever mind onto the page, without the need to edit.
Nick loved music. In
fact, he wrote a poem about how much he loved music.
[read Music]
He liked upbeat music, anything with a good groove or a good
beat. The 80s were his absolute favorite
-- Prince, Queen, The Police. Whenever
we didn’t know who sang a song, we would always just ask Nick. And later in life, we’d call him on the phone
from wherever I was living, because he’d always know, no matter how old or how obscure
the song.
It is impossible to talk about Nick and not talk about his
sense of humor. It is evident in every
interaction with him, in his approach to life, in his parenting, throughout his
different health issues and even in the title of his blog. Humor is one of Nick’s most loveable
qualities. And many times over, we saw
this in him, not only in his daily life, but also in difficult times, when
everything felt heavy or dark.
And this leads me to probably the most important thing that
I want to tell you about my brother today.
Which is -- that despite Nick’s many gifts, over the years,
I think many people who have known Nick felt that he didn’t have a fair shake
at things because of his health issues.
When he was 10 years old, he was diagnosed with Tourette’s Syndrome and
made embarrassing sounds and had physical ticks at a time in life, when all you
want is for people to like you and affirm that you’re okay.
When he turned 20 the ticks started to fade, and we all
thought he was in the clear. But, when
Nick was 25, he started falling asleep at his computer when writing, and his
legs would give out sometimes if he would laugh really hard, and he was subsequently
diagnosed with Narcolepsy. He then initiated
a series of frustrating medicines to help with this, often with undesireable
side effects.
But, despite all of this, we had a talk on his bed last
month when I was home and he said “Isn’t this crazy? Cancer.
I’ve been so HEALTHY all of my life!
I’ve never had anything wrong with me! I’ve never broken a bone, I never
had diabetes, I’ve never had heart problems…” and I waited…. and I waited… while
he sat there looking bewildered.
And, eventually I said … well, you had the tourette’s.
He said oh, well yeah, but that was okay.
And then… you know, the narcolepsy… and he said – OH, well
yes, that was a setback.
But, he said, I never would have had the empathy that I have
for other people, had I not experienced those things. They made me what I am.
Growing up with extreme self consciousness, and not always having
the feeling of belonging, Nick did develop an incredible sensitivity to people,
to the dynamics of acceptance and tolerance, and how important it is to be good
to other people. His empathy came from
his core.
We were also lucky to have a father who knew the importance
in finding humor in adversity, and who was also an example of the strongest
form of unconditional love that I have ever known. We had an amazing mother, who was the most steadfast,
present, loving mother than any child could hope to have. The amount of care, time and love that she
poured into my brother was extraordinary.
So, I just want to reassure those of you who have ever felt
that Nick somehow didn’t have a fair shake at life, or wasn’t given a full
chance -- because of his health issues -- that he just didn’t see it like that. But, what he overcame to become the person he
was, with the attitude that he had, with the ability to stir something loving
at the core of all of us, is nothing short of profound.
Our family is so grateful to have had the TIME that we as a
family have had to care for Nick over the last 2 months and really LOVE ON HIM,
savoring every precious moment, every glance, conversation and laugh… and every
manifestation of his deep childlike sweetness that was present until the moment
he passed. Having this time with Nick has
been a blessing beyond words. He was at
peace with his process, and actually had some fun with this whole cancer thing.
When Mark Johnson’s office called Nick to get his history
over the phone to speed up his port placement, after 20 minutes of answering
laborious questions… he said you know I actually feel pretty healthy other than
this tumor in my middle!
When Nick went in for his first chemotherapy, the nurse sat
down on nick’s right side, but his port for chemotherapy was on the left, and
he said quietly, “the gas tanks on the other side.”
To all his visitors and medical personnel… he would ask -- How
are you doing? Nancy, where are you
from? Aaron, how is your softball team
doing?
He took this cancer and all of its treatment, totally in
stride, head on, and hardly seemed to flinch.
But, he was not at peace with was leaving his family. Oh he loved his Sandra. When she bought the family a Wii a few weeks
ago as an anniversary present, Nick said to me – isn’t my wife awesome? Isn’t that great?
I won’t even attempt to put into words how much Nick loved
his children, because it’s not possible.
They will be the legacy of love that Nick is leaving behind him.
Our hope is that this service will be life affirming, even
though it is bittersweet. For this
cancer did not get the best of Nick, we assure you, but rather brought out his
true qualities and his remarkable character.
If this loss has taught us anything beyond the beautiful
depth of who Nick was, it has taught us that we are blessed to be part of this wonderful
community of people, who have grown up here, knowing Nick. We discovered that the bonds of friendship
that were forged many years ago, are still just as strong today, even after
periods of dormancy.
It is this true community -- of wonderful families and
people -- that we live in, your visits, your calls, letters, cards, your
lasagnas, but most of all your shared love of our Nick - that has made this
process remotely tolerable. Knowing that
we are not alone in our awe and appreciation of who Nick was and how he
enriched all of our lives with his humor, sensitivity, honesty, and precious
moments of wisdom, from someone who KNOWS what it’s like to not always have things
go their way, has provided some peace for our hearts.
It will be this community that allows our family to go
forward and go on living, attempting somehow to fill the gigantic hole that Nick
has left behind him.
As he said so eloquently last week…
I wouldn’t change a thing, if it meant that I had to be
someone else.
And may we all learn from his example.
Thank you.
Thank you.
