Tuesday, June 4, 2013

My Brother's Eulogy - May 2, 2009


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.