Saturday, June 4, 2011

A New Beginning?

That's a positive way to look at it, I guess; a new beginning.  Just as I was sitting here, contemplating whether to try and organise my thoughts by employing my internal honesty-in-public pressure and blogging about the issue, a friend's Facebook status popped up - all timely like.  The gist was about how she was feeling a new opening, or returning, of self confidence, self-acceptance, embracing her uniqueness, and how this banishes one's self-doubt and fears. etc.  No small thing.  I replied with yays and yeses, as she is in fact quite awesome, but immediately felt a hypocrite.  For here I am suffering, and I can't decide whether it's dire, noble, or if anything I think about it is even relevant.  Whether it might just simply BE.

Lately, I've been on a downward run, for sure.  More pain, mainly from my back, and also my GI tract is getting worse.  Slower, painful, etc.  Speech mostly gone now.  Hands nearly all clawed-in, all symptoms pretty much worse.  In consult with the Doc, we've experimented with various painkilling techniques, as chronic pain truly does suck, and naturally there's a trade-off.  Most analgesia also deleteriously affects my already-dodgy digestive system, and increases my nausea, so we've had to add meds for that.  Got to a place where there is little or no pain though, finally, which is.....nice, in its way.  But the price is, I am now, really, a proper cripple, and beset with all other manner of unpleasant symptoms, like restlessness, cold/hotness (yes, at the same time), insomnia/tiredness (again, simultaneous) and this weird, all-body general discomfort.  There just are not words.

So, pain, maybe?  It's a possibility, but then I remember how that is, and that my symptoms are not all drug-related anyway, there'd still be other shit to deal with.  Oh yes, that's right.....I'm dying, aren't I?

You forget, see.

Or rather, the knowledge just engages you that much more with how much of life you can participate in, so as things deteriorate, you just take your joy more in what's left.  Pardon my slip into the second person there - it's a defense mechanism, you see.  I mean to say I have been finding my joy in what is left, but now - the list is so small I don't have to write it down to take it to the shop of life.  A 'milk, bread, eggs', sort of thing.

Today I faced the choice starkly - go into being in pain, suffering that way, and being able to participate more with things like physical activity - being able to drive a long way, go down the hill, see some sights, do some shopping outside my home town, visit friends or family - possible, but then, I've seen me after 3 days of full-on pain.  Ask around, chances are you know someone who never gets relief from pain, it's shit.  Plus, over time it makes my other symptoms worse as I tense and stress. Or, accept that my new, low-energy self, with chronic discomfort and annoyance, unable to move far from a comfortable chair or bed, unable to drive far, even as a passenger really, and that I'll more likely than not never see a place beyond the few miles around unless some medical necessity and transport dictates it.  Fucking grim thought,  I can tell you, because it's not like I'm on the edge of a rainforest rivermouth and sandy beach in an eco-lodge in Costa Rica here, you know.  My house is fine, the garden is, well, 'getting there', but now there's not much I can do except look at what needs doing there anyway.

Look at Mr Sad Sack complain!  What rights do I have to be so down about it all anyway, given all the inevitability of suffering in the world?  I guess because we must need to suffer.  Maybe that's why we're so bad at just dying.  Because surely, not long ago, my situation would have seen me off well before now.  As I've mentioned before, we seem so loathe to just let nature takes its course - because we can change it!  We are a part of this nature, and can act on it, so why not?  Somewhere, there must be the balance.  I don't know where it is, but I have made a few decisions lately.  And this is not news to my wife, nor will it shock those close to me, so it's not a publicity stunt (pfft) or avoidance of personal communication.

One thing I've decided is that I won't be doing TPN.  That stand for Total Parenteral Nutrition, or intravenous feeding in layperson's terms.  It's how we keep people alive when they have no gut function these days, and yes, one can live on it successfully for years, if nothing goes wrong, or if nothing else is wrong.  But to me, it's too far a step into the unnatural, and I won't be doing it.  This means, bluntly, that once my gut does finally stop working, I shall remove my tube and allow myself to starve to death.  Takes a couple of weeks, I'm told, unless you refuse hydration also, and then it's fast, like 48 hours, but nastier.  Symptoms are manageable on the journey, and I could possibly stay at home, which would be nice.

Another thing is that I might stop watching Global Village and nature docos for a bit, as I am wanting to cry too much seeing places I will now never see at all.  A bit pathetic, but I love this planet so very much, and once planned to travel frequently and far.  Ah well.

A third, undecided, but nascent thought is that I might have a little going-away party.  I have a few friends left here and there, and if my condition progresses at the rate I suspect it will, then I might enjoy a chance to say 'thank you' in person to those who have filled and loved in my life who are still local enough to make it.  That way they won't feel like they have to go to the funeral either (and I have that sorted now too btw) if they don't want to, I guess :-)  Humour, people, humour!  Perhaps a luncheon at the Zoo, or Mundaring Weir, or somewhere lovely.  I could manage that with a little help, I'm sure, and I'm confident of waiting for the better weather too.  Just a thought.  maybe next birthday, yes, perhaps.  We could live FB it and my overseas friends can be there too, as it were.

Making these decisions and planning a little helps some with the suffering.  It does take you out of the present temporarily, which can be a relief at times, but more importantly it's empowering to decide things, makes you feel still a participant of sorts, rather than just being totally strapped in on the ride.  But the real journey for me, I suspect, is how I am transformed - or not - through the suffering.  Quite clearly, decisions like the removal of my tube or more extremely direct measures against life are always there, but I've made my choices.  As above.  The drugs change things, but do not remove the existential stuff, nor all the physical discomforts.  I must just spend more of my day living it, suffering and all.  I seem to get a good 4 hours every two days on the drug cycle where I can write a bit, so if I'm super diligent, I might even get my half of the book finished - but it's no longer the thing-to-live-for type of goal it once was.  That's OK.  It'll work out as it needs to.  And, of course, 'miracles' happen.  To quote, again, a twit I follow - 'The road to Lourdes is littered with crutches, yet not a single wooden leg'.  There are limits in the physical world, it seems.

So, yes, a new beginning beckons.  As the old saw goes, the 'beginning of the end'.  As I said to the doc the other day, after all the changes, deteriorations, losses,'s this new reality of spending so much time just sitting that makes me feel like I'm really dying now, emotionally.  The physical facts have always spoken for themselves.  I think it's time to embrace the me that is now within sight of that final slalom gate on the big downhill run.  But just to be clear, I still have a lingering fondness for the idea of a massive exit courtesy of a rogue bit of space junk just as I'm watching some lovely thing in the garden.  Well, they talk about the laws of attraction and all that, so.....that'd be superb.

After all, there's half a million bits up there now, travelling at 25,000miles an hours, and it's all gonna come down eventually.....


  1. Please know you are loved, my friend. Jessica in Cleveland, OH USA

  2. Darlene Carter , FL, USAJune 4, 2011 at 9:04 PM

    I always am amazed @ your you have helped so many with the Blenderized Diet...and your outlook on life...I admire your courage !!!! Proud to have you on my friends list !!!

  3. Michelle SorensenJune 4, 2011 at 9:34 PM

    I hope it helps to understand the depth and breadth of the impact you've had on people all over this planet that you love.

    My life, my child's life, my family's lives--all better because of the courage and information that you gave us. THANK YOU.

    Maybe some virtual reality travel? Surely some of that SciFi stuff has made it into reality!

  4. Well written. We'll get er dun!

  5. I wanted to let you know how much my son and I appreciated all your input on the blenderized diet. Keeping you in my thoughts.


  6. Wow.

    You continue to amaze. You have such depth of perspective in the face of all this pain and seemingly expanded awareness in the face of physical limitation and courage in the face of death, alongside the unavoidable sadness. (Have your coping skills always been this exceptional? Honestly. It's impressive.) The level of thoughtfulness you bring to all your interactions is rare. You, in a way, have given me hope BECAUSE you are one of "the ones"... those who so clearly love the planet and its people and are leading the way without even realizing it. You help prove that we are in fact not devolving into power-seeking haters and fame-seeking pageant politicians but we are actually, overall I think, rising above all that, toward meaning and love. "Don't let reality TV fool you," I tell people. "Go read Entropy and Light."

    I'm so sorry that you are suffering.

    I'm so glad to have e-met you.

    (And I'm not saying I deserve a medal or anything, but this is the fifth time I tried commenting, having been thwarted by a two-year-old who laughs just like cookie monster and a stupid ancient laptop. So, I'm proving that humanity can overcome technical frustration with minimal swearing. And you're welcome.)

  7. Thanks everyone for your comments, messages and emails. They mean more to me than maybe you realise. And thanks for bearing witness. :-)

  8. I am glad that we received a post on the other site that you have written some words to read. I have your site bookmarked on my computer but haven't gotten to your site for a few days now. I miss your humor in my daily pop up emails. I was thinking of changing groups just to be able to get the advice you have given me when my husband was ill with cancer and he needed a tube. I love your thoughts and humor. Pain is not a fun thing to deal with as when you are in pain you can't really concentrate on others or important things like your garden and the beauty to touch and see. I love the idea of throwing a party. Those are way better than funerals. You get to say thank you at the party and know what people think and feel. Truly a celebration of ones life. You truly amaze me Eric and thanks for walking with me via the internet in helping me help my husband through his time of trials. Blessings to you and your wife. Lisa Nerenhausen

  9. Thank you Eric, for everything. Your wit, your willingness to share your knowledge with others, and your compassion. Our family would not be where it is today without the help you provided on BD. Keeping you in our thoughts.

  10. Eric know that you have made great contributions to many lives. You generously supply information, and lots of humor, and great narratives for all of us. Every time I drink coffee I shall savor it especially for you! Kathy Johnston (lover of the vitamix)

  11. Eric, I think you have written a beautiful book in the life that you have lived. Thank you so much for sharing that life with many of us who walk a difficult path. Your insight and advice has made me understand my daughter better, and I share your comments with everyone I meet that has a tube, a loved one with a tube, and many who have neither. You are a force for good, quite literally. I am struggling for the words to tell you how large you are in spirit.
    I look forward to meeting you in the next life with your new beautifully working body and thanking you in person.
    Your Blended diet friend

  12. I just finally caught up with you...and I guess I didn't read far back enough in your blog to know you were...leaving so soon. I hope you have that FB party. I would stay up all hours just to finally say goodbye to you. You made a difference with BD and my 4 year old daughter Lily. Thak you for all your words. I'm proud I got to know you through BD. See you on the other side.

  13. Eric, thank you for sharing yourself with us in so many, many ways. May the days ahead grant you and your loved ones peace. Sending love and admiration from Alaska, USA.

  14. Eric, you are larger than life. Your words have stayed with me and have been passed on to others on similar journeys to yours. Your perspective is so important to those of us with non-verbal tube fed children. You keep us thinking outside the box.

  15. Eric, I'm so very grateful that our paths have crossed. Your words of compassion, honesty and wisdom have touched me and changed me. I hope you know the care you have shared has impacted many many people. I know I am a different therapist since coming to know you through the Blenderized Diet groups. You seem overflowing with love and love never dies.

  16. Eric, your words are so meaningful to me as my teenage son is experiencing almost exactly the same physical issues you describe- he has an undiagnosed disorder- possibly mitochondrial. I am in the position of helping to make the same decisions you write of in this post. My son is able to tell us what he does & does not want. He wants life on his terms- he is mostly at peace and able to enjoy much of his day even though he is too tired to want to leave the house, but there are moments when he just screams, and I can only sit and hold him trying to imagine how he perceives things, how he feels. Your words here and at BD have helped immensely in this regard.
    I have a nondual/ Taoist bent and your worldview touches me in that regard too.
    All the blessings that are mine to give, I give to you Eric.

    Cindy L. in St. Louis

  17. You bring me joy. I wish you peace. Thank you for all you have given of yourself.

    Julie (and Jacob) in St. Charles Ilinois

  18. Another voice from across the planet (Canada) thanking you for your support and love for this community. I enjoyed working with you on the research project and have already used the data for all kinds of purposes.

    Peace and courage.

    Julie Kristof in Montreal, Quebec, Canada

  19. Thanks for the help with the BD and all your other intelligent, fun to read posts! Excuse me if this sounds selfish, but do assign someone to do updates when you are no longer able to write to let us know how you are doing and to let us know when "your time" finally comes. Hope you continue to have lots of the better sort of moments!

  20. though this might not mean anything, you have touched my life. So many times, my wife and I sat in a tiny room in more than 8 different hospitals waiting for some doctor to tell us if our child was still alive. Twice the answer was no, they died, but we brought them back. Since then, I have been scared shitless of death...until I also e-met you. You have shown me that death can be peaceful. Thank you, so much for your gentle truths of knowing you are dying.