May 062019
 


I have lived a good life. A really good one. I’ve had the fortune to meet, befriend, and work with incredibly interesting people and in some cases make some sort of impact. It hasn’t been a particularly long life – I’m not sure at what point I reached ‘middle age’ but if so I think I’m scraping the door.

I had some bad news about a 10 days ago. After some bouts of illness and delays in which I was too ill it’s clearly apparent just how drug-resistant and how aggressive this particular sarcoma is. I’ve had the word that I’m not just inoperable but at this point any treatment would probably kill me, so I’ve been transferred to the Guy’s & St. Thomas palliative care team.

I’m going to die within months.

Which I’m remarkably OK with. Ready-ish to pass, though not to leave Clare behind. All I care about is making sure she’s OK, really. There are tears and shock and there’s a mountain of legal crap to occupy my time.

BTW: Haven’t set up a will? Go set one up. Today. It doesn’t take long. Anything is better than nothing.

My days are spent – mostly – sleeping, eating, coping, dealing with crap. A little bit of work: Nesta are being unbelievably helpful and kind (helped on by UK/EU human rights laws and disability protection – but they are really above and beyond the call of duty. Which helps. I don’t honestly know what my value-add is but it’s non-zero and hopefully of use to my colleagues who are picking up the pieces after me.

Any ask?

Please, I don’t want any pity. I’ve had a good life. I’ve got an amazing wife and people who love me from right round he world. I’d love to hear how you’re doing and how things are going. Pictures of your kid, your cat, your dog, your trials and travails. I think what most people in my situation want is just to know that normal life is going on somewhere and to hear about it – the question I can’t really ever answer is “How are you doing?”

Thanks

For reading and following this and all your kind words. Sometimes you don’t win, but I feel like I’ve won at life. Wouldn’t mind another 40 years but this is what I get.

 Posted by at 20:00

  15 Responses to “…at least I’ve got fewer tablets to take.”

  1. Thankyou Glen for being a part of a magical world I inhabited in San Francisco for a while. You shaped my values which I have placed in my backpack and travelled onwards with. I always loved you.

  2. Glen, I honor you for your stand and who you are being in the matter. It is my honor to know you, your brother and to have known your dad. May you be complete in all matters earthly and spiritual. It sounds as though you already are. Blessings to you and yours.

  3. Tremendous love and gratitude for you being around, in NOLA and everywhere. Is there a IG, FB or email for Clare?

  4. Hey Glen. After building stuff out of fabric for many years, I’ve lately started building stuff out of wood. I’m stubborn and like to design things myself and make my own mistakes, so some of the results are kind of crappy. I’m never going to be a Master Joyner. But I built myself a compost bin to my own specs — two compartments, side-by-side, so one can “cook” while we add veg scraps to the other. And it’s tall enough, with handles positioned so the neighbors can easily reach over the fence and open the lid. I posted a photo of it here https://42itous.dreamwidth.org/397946.html in case you want to see it. Also in that post are two baby quilts I’ve made recently.

    I hope you’re comfortable and have interesting things to read.

  5. I’d love to write you a letter about what Nick and I and our boys are up to. I know it’s been a long while since we talked, and I know you’re forever in my heart. If it’s ok, please leave your address in a message to me on facebook or send it in email. Every moment we had with you enriched us. The fun, the friendship, the life talks, and most especially the laughter.

    I love you sweet man, Rebecca

  6. dude. you are brave and ballsy and raw, like always. thank you for being you.

  7. I just wanted to say i love you and that you have made my world a much better place. I am so sorry that i havent kept in touch better. It is my honor to have you as my brother and my hero. Joeseph is going to be 17 in August and is maturing into a great young man. Dave and i have gotten divorced but we still co parent. We still live together and take care of Joeseph but still live our own lives. I pray for you everyday Glen. Even though dave and i are divorced he atill loves you the same and you will always be his brother in law. Please send Claire our love.

    Love you always big brother??

  8. Glen, I just want to say that you are one of the finest young men I know and that your dad would be proud of you and Danny.

  9. You’re awesome Glen. Huge thanks for everything you did in yesteryear for our community, especially for London Decompression. The UK burner community sends you its love and support and thanks. X

  10. Glen, Dave G just let me know about this. We’re up at Milford right now – on the retreat. Trevor and I have been thinking about you – we loved having you at Milford and we’ll be raising more than one glass to you this evening. Go well.

  11. Hey Glen–I am beginning rehearsals tonight to play a woman who also died too young–Joan Mankin, actor and Clown–I’ll play her in a show opening soon in Portland. An honor to have known her, and my luck to have lived this long. I’m also working on an opera about American painter Morris Graves, who lived in Loleta for 30 years. You left a beautiful legacy for us at Dell’Arte, by getting your dad to carve that sign, which has been magnificently refurbished and will be an art/people beacon as long as we can keep up the good fight in Blue Lake. You were a part of the last 40 years and will be a part of the next 40 if that comes to pass. Thanks & love

  12. Hi Glen. Just reading this in shock – i had heard from Patricia that you were unwell but had no idea it was this bad. It was always on the back of my mind to catch up with you. The seed you planted in NI with SI Camp continues to grow through the work Patricia and co are doing on the Community Innovators programme and also the Techies in Residence programme, now in its 4th cycle. Was a pleasure working with you, your work with BGV and SI Camp was a real inspiration. Thinking about you and hope you get some quality time with Clare and the people you love in the coming weeks and months. Paul

  13. It’s been an honour and a pleasure on the occasions we’ve met – both in the UK and Cairo. I know others here will agree. My life this week is on the ecstasy end of the rollercoaster of being a Liverpool fan. We’re in the Champions League final and may still win the Premier League, although the latter is more in the lap of the gods than the former. And even if we lose both I’ll still be a Red forever #YNWA

  14. I wish you had more time to live and fulfill your dreams.

    My sister Alyce passed away from colon cancer in January.
    I am currently in the middle of that pile of legal crap that is headed Clare’s way.
    You are welcome to message me if I can be of help making things easier for her.
    With Alyce, we had 2 months to sort things out and still left a substantial mess in the aftermath. There were definitely lessons learned I would be happy to share. A will alone is not sufficient.

  15. Oh Glen, I’m so sorry to hear about this turn of events, but I’m so inspired by your perspective. Not sure if you know that I’ve been working at a nonprofit called Reimagine End of Life (letsreimagine.org) and it’s all about addressing the taboos around death so that we can live as rich a life as possible, and then have a good death at the end of it. The reality is that we’re all going to die, so why not take as much as possible out of every moment that we have on this planet? I hope you will take comfort in knowing that you have touched countless souls over the years, mine included. I wish you all the joy, love, laughter and good memories that you can soak up over this time so they can carry you on to your next journey.

    On the more practical side, because of my work I have a lot of resources around end of life planning and how/what to plan for afterward, so if there’s any help or info I can provide to you or Clare, I would be honored to do so.

    Wishing you, Clare and your family so much love!!! Give Thanks!!!

 Leave a Reply

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>

(required)

(required)

This site uses Akismet to reduce spam. Learn how your comment data is processed.