Thursday, June 6, 2013

Rage, rage, against the dying of the light...

Several months ago I was reminded of Dylan Thomas's famous poem "Do not go gentle into that good night" when thinking about Eric's attitude toward the fast-approaching end to his own life.  Eric wanted, in fact, to go as gentle as possible; he seemed, in the last few months, to have come to peaceful terms with the awful hand he'd been dealt, and worried more about how hard it would be for us to have to lose him than for him to go.  "I'll be gone," he'd say, "I won't have to deal with it."  I think we all  were inspired by his brave reconciliation to the cessation of his life.  He wasn't interested in fighting death for every last second of life, as Thomas urges his dying father to do in his poem; he wanted quality of life or none at all, and hoped, above all, not to live for a prolonged period with the terrible disabilities that the tumor might produce.

The disease doesn't pay much mind to it's victims' wishes, unfortunately; and Eric is now in a place he never wanted to be.  His functioning has deteriorated greatly over the last couple of weeks.  He has to exert enormous effort to stand up -- his right side is completely numb, and doesn't seem to obey his mind's commands; when I observed to him that it looked as if his limbs felt like they were encased in a suit of armor made of lead he said that this was exactly how it felt to try to move.  Walking is precarious and slow, and he uses a wheelchair if he needs to go more than about ten feet.  He is often disoriented and has enormous difficulty finding the words he needs to communicate his thoughts, feelings, and needs. The steroids he is taking to lessen the inflammation in his brain give him a ravenous appetite, and he eats an astonishing amount at each meal -- which also means he has put on quite a bit of weight.  He may not be interested heeding Thomas's command to "burn and rave at close of day," but the steroids in his body make him perversely hungry for sustenance.  They also make him emotionally volatile and quick to anger and frustration, although when friends come to visit he perks up and reverts to his old charming, witty, sly self.  His sense of humor is as sharp as ever, and when he's rested he can pull some amazing facts and stories out of his memory.

He is in need, at this point, of company 24/7, to keep him safe and to help him take care of his daily needs.  He is still able to do many things on his own, but everything that we all take for granted takes him enormous effort and energy.  He spends a good deal of the day sleeping -- we joked when I was just there that he's on a dog's schedule:  that is, a day full of power naps punctuated by meals, pee breaks, and "play time" with friends.

It became pretty clear over the last week that the trip to Michigan was not going to be possible in the condition he's currently in, so we will be skyping with him over the weekend so that he can participate virtually in his nephew's coming-of-age ceremony. After the weekend, family will return to SF to be with him.  We know we are seeing the dying of the light now, and we'll be at his side, giving what comfort and support we can to help him go as gently as he hoped he would.


  1. Thank you for the update. Hope the nephew's ceremony goes well and that he can enjoy it even in the confines of home. Wishing him a peaceful ending, despite the discomforts already existing.

  2. Thank you for the update. He has very much been in my thoughts lately. It's great that he is surrounded by family, even in the virtual world.

  3. Thank you so much for your updates. I happened upon Eric's blog when my husband was diagnosed with a brain tumor and I was searching for anything I could on the disease. My husband was diagnosed 3 months before Eric but passed in April 2011. Eric's progress brought me hope that maybe someone can beat this horrible disease. It is amazing to me that Eric has done well for an additional 2 years. I'm so sorry Eric and all of you have to go through this; it is horrible, but it strangely has some blessings that come along with it. My children and I are closer than ever, we never take little things for granite, we don't get uptight over stupid stuff that gets everyone else riled up. We know what counts and we never take that knowledge and love for granted. I don't know how religious you are, but my husband came to me in many of my dreams just after he died, smiling and so happy, telling me he was fine and not to worry about him. Sometimes,just sometimes, I think he got the better deal. Heather

  4. Thank you for updating - have been looking weekly since the last one. I want you to know that while I know Eric only peripherally, I've always admired him and how he's lived his life. There was a time I was fully crushed out on him - the river trips, the films in the park, the frisbee and so handsome! His story has been a wake-up call to me to live my life with as much aliveness as I can and to wrench from it as much joy and living as possible. I would've liked to know Eric more fully but I know he is a remarkable man. Peace, blessings and love to him.


  5. I echo many of the sentiments about but would like to add that Eric, you are my hero. sesserz

  6. I am struck by the clarity and articulateness of your posts.
    Your ability to focus and transcribe thought and experience into words is staggering, particularly given the circumstances.
    Not only are you providing deeply appreciated information to all of us who love Eric, but you are conveying a sense of how he (and your family) are feeling/functioning.
    Reading your posts, I really FEEL the sadness and loss, as well as the moments of levity that are giving you the ability to keep going each day.
    I hope it helps for you guys to know that there are many many people thinking of you at this time, and we send our love and caring vibes your way every moment of every day.
    -Jim H

  7. I'd love to come by for a visit this week if he'd be up for it. I know he's having trouble with text/email, so I didn't know if a brief message in that manner was still appropriate to plan something. Thanks! -Bethany

  8. I am one of Eric's co-workers, love and miss him dearly. Please let me know if there is a time I can visit or a way to help you all right now. Company for him, food, cleaning? Thanks, CCup

  9. The light of Eric's spirit will never die, but will live on in our hearts forever...

  10. What Jim H said, indeed, you're communicating so adeptly, this mixture of pain and extraordinary tenderness! It's deeply appreciated.
    We keep learning from Eric, now much about bravery and tranquility.
    Soooo glad he's not currently in a lot of pain, and that he has hospice just in case.
    Warmth and fondest wishes to Eric and his wonderful family. You make the world a better place.

  11. I am writing this, just minutes after I learned of Eric's passing. I was telling my wife (who knows Eric from when we lived in SF) that I've never personally seen the "negative" side of Eric. So in a crazy, perverse way, I smiled at the mention of the steroids making him "quick to anger and frustration". he is a flawed human, after all!

    I am sobbing at my home office laptop, wanting to scream out loud with all my might. Eric is an inspiration on so many levels. He is in my heart forever. And will be right with me this weekend when I run my ass off on the ultimate frisbee fields here in Portland.

    Jeff Skoke