Posted by: ElliptiGO Girl | September 2, 2014

Onward into September

Hal is gone. Just “for now” I hope. But he is gone, at the very least “for now”.  I feel his absence acutely. All day. Much of the night. Little things, big things. 

I stopped posting on this blog over a year ago. Caring for Hal as he continued to decline was all-encompassing, and reporting on his ongoing losses was tough, although the manner that Hal dealt with each subsequent loss was truly inspirational.

Hal did not want to leave this world. He intended to stay here, despite his ALS, despite his body paralysis, despite his relying on life support and round the clock care. Unless (Note – not “until” but “unless”) he risked becoming totally “locked in” (see “total locked in syndrome” http://en.wikipedia.org/wiki/Locked-in_syndrome  )

Hal started to notice he was losing control of his eye movements almost a year ago. Using his eyes to maneuver his computer became more and more difficult.  He had to give up coding (he was working on some bitcoin related open source improvements).Then he had to give up posting or emailing. Then using the internet at all. Then reading ebooks. Then using his speech program. Then watching television. Finally he was only able to communicate by raising or lowering his eyes. Around June 2014 he started to lose even that small amount of eye control. It became almost impossible for him to communicate anything other than issues of extreme physical discomfort and urgency. Then, and only then, is when Hal decided it was time to to go to “plan B” – cryonic preservation. 

I continue to derive inspiration from Hal. I take comfort in the possibility that he will come back to this world some day in the future.  I hope to be there with him.

Taken July 2009

Taken July 2009

Taken July 2013

Taken July 2013

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Responses

  1. My sympathies to you. I found this blog from Hal’s forum posts and I think it is amazing that you two tried so hard to make the best of a tragic situation. It sounds like he was lucky to have you to help make his final years easier and happier than they would have been otherwise. May you find peace and comfort in the good memories..

  2. I can’t “like” this post, I just can’t do it. But I like that you are still deriving inspiration from Hal, and I hope that you will continue to learn how much Hal meant to others. Such a great man, yet he was such a gentle soul. I am not so very far away but if you are ever in the southernmost tip of California, know that a Hal Fan is here waiting for you. You were lucky to have each other here on this plane, and hopefully, you’ll have each other for a very long time again in the future!

  3. I recently published my article on newly researched natural medicinal plants and their potential for treatment of ALS, Alzheimer’s and other neurodegenerative diseases. It can be found at:

    http://ayahuascatreatment.wordpress.com/2014/09/01/ayahuasca-ethnobotanical-medicine-for-treatment-of-als/

    It is the culmination of several years work, having studied ethnobotanical medicine in the search for something viable. Hopefully, you will find it an important topic.

    I wish you a nice day.

  4. […] Surely everyone present knew that the objective was for him to stop breathing and begin what, according to his incredibly supportive partner, he considered “Plan B” — cryonic preservation. There was seemingly no reason to […]


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