Tuesday, 11 September 2012

Grief and Loss in the Geek Community

A friend's husband is dying. It's a matter of hours and minutes now; there are no days left. He's been dying since I first met his wife Tashi online a couple years ago, but early yesterday morning he slipped into a coma that he will not ever wake up from. He's receiving Hospice care to keep him comfortable and out of pain, but his lungs are slowly filling with fluid and his organs are failing one by one. It won't be long now. It might have already happened as I'm typing this.

You can read their story here in The Daily Mail or here on their website, but Kevin (a.k.a.: "Wash") has Glioblastoma Multiforme (GBM), an aggressive form of brain cancer. Most people diagnosed with it live for 9 - 12 months, but Wash has kept fighting for 35 months now. Tashi is 25 years old and has been caring for him full time for the past 2 years. She is losing her best friend and her partner at 25 and the universe feels completely unfair.

Tashi and Wash are geeks of the most wonderful sort. They sent a request to Regretsy for a ceramics artist to create a custom TARDIS urn to hold some of his ashes. The remaining ashes are to be launched into the air from several locations in small rockets that he constructed with his friends. This is what he wants, and it sounds like such a fitting tribute to his memory.

Many of Tashi's friends (myself included) have changed their Facebook profile pictures to TARDISes to show their love for her and Wash. I tried to find words of comfort that I could share. I didn't want to choose religious words, because I'm not a religious person and they would have been empty platitudes coming from me. Where better to turn than our favourite show?

"Astrid Peth, citizen of Sto. The woman who looked at the stars and dreamed of travelling. Now you can travel forever. You’re not falling, Astrid… You’re flying."
-- The Tenth Doctor, Doctor Who (Series 4, Voyage of the Damned)

"This song is ending. But the story never ends. We will sing to you, Doctor. The universe will sing you to your sleep."
-- Ood Sigma, Doctor Who (Series 4, The End of Time, Part 2)


And I found comforting words from the scientific community:

"When my husband died, because he was so famous and known for not being a believer, many people would come up to me — it still sometimes happens — and ask me if Carl changed at the end and converted to a belief in an afterlife. They also frequently ask me if I think I will see him again. Carl faced his death with unflagging courage and never sought refuge in illusions. The tragedy was that we knew we would never see each other again. I don’t ever expect to be reunited with Carl. But, the great thing is that when we were together, for nearly twenty years, we lived with a vivid appreciation of how brief and precious life is. We never trivialized the meaning of death by pretending it was anything other than a final parting. Every single moment that we were alive and we were together was miraculous — not miraculous in the sense of inexplicable or supernatural. We knew we were beneficiaries of chance. That pure chance could be so generous and so kind… That we could find each other, as Carl wrote so beautifully in Cosmos, you know, in the vastness of space and the immensity of time. That we could be together for twenty years. That is something which sustains me and it’s much more meaningful.
The way he treated me and the way I treated him, the way we took care of each other and our family, while he lived. That is so much more important than the idea I will see him someday. I don’t think I’ll ever see Carl again. But I saw him. We saw each other. We found each other in the cosmos, and that was wonderful."
-- Ann Druyan (author), talking about her husband Carl Sagan


And here:

"You want a physicist to speak at your funeral. You want the physicist to talk to your grieving family about the conservation of energy, so they will understand that your energy has not died. You want the physicist to remind your sobbing mother about the first law of thermodynamics; that no energy gets created in the universe, and none is destroyed. You want your mother to know that all your energy, every vibration, every Btu of heat, every wave of every particle that was her beloved child remains with her in this world. You want the physicist to tell your weeping father that amid energies of the cosmos, you gave as good as you got.
And at one point you'd hope that the physicist would step down from the pulpit and walk to your brokenhearted spouse there in the pew and tell him that all the photons that ever bounced off your face, all the particles whose paths were interrupted by your smile, by the touch of your hair, hundreds of trillions of particles, have raced off like children, their ways forever changed by you. And as your widow rocks in the arms of a loving family, may the physicist let her know that all the photons that bounced from you were gathered in the particle detectors that are her eyes, that those photons created within her constellations of electromagnetically charged neurons whose energy will go on forever.
And the physicist will remind the congregation of how much of all our energy is given off as heat. There may be a few fanning themselves with their programs as he says it. And he will tell them that the warmth that flowed through you in life is still here, still part of all that we are, even as we who mourn continue the heat of our own lives.
And you'll want the physicist to explain to those who loved you that they need not have faith; indeed, they should not have faith. Let them know that they can measure, that scientists have measured precisely the conservation of energy and found it accurate, verifiable and consistent across space and time. You can hope your family will examine the evidence and satisfy themselves that the science is sound and that they'll be comforted to know your energy's still around. According to the law of the conservation of energy, not a bit of you is gone; you're just less orderly. Amen."
-- Aaron Freeman (author), on the NPR program All Things Considered.


ETA: Wash passed away September 11th at around 11:30 PM EST. Please consider donating to the fund to help Tashi with end of life care and memorial expenses. Happy travels, Wash.

ETA2: Added hyperlink to Regretsy follow-up post with picture of the TARDIS urn.

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