Saturday, June 27, 2009


Someone who reads this blog recently asked me what I think about the blog comments. Now you probably noticed that I don’t comment on comments very often and you probably noticed that on certain blogs there are a large volume of comments. It’s really just too hard for me to comment on them all and although a lot of sites on the internet are intended as a cyber dialogue, this one is really more of a monologue with occasional responses and that’s just how it has to be.

Having said that, I have to tell you that I get really excited every time I see that someone has sent in a comment. And I love getting your comments. I love your kindness and unforced compassion. I love your insights. I love the way you address one another. I love the way you share things about your lives and struggles. In short, the blog comments are an important part of my life, and so you, Muselings, have become part of my wonderful circle of loving friends, whether I know you or not.

A couple of other things about the blog comments -- sometimes people ask me why their comment didn’t get published and I don’t usually feel like I need to answer that because the obvious answer is: it’s my blog, deal with it, but just to let you know, I made a conscious decision to make this blog a place where I don’t back off from talking about the things that scare me or cause me grief but at the same time, I don’t want it to become a negative place. If people want to say bad shit about other people, they can go to I, however, really don’t want that on my blog. Believe me, there are a couple of people in my life –well, at least one…let’s just say there’s not enough band width to go there. So I don’t. This blog is a special place for me and I don’t want to turn it into something ugly.

Another thing about your comments – sometimes people write such complimentary things about me that I get a little scared because I feel like Harold Hill in The Music Man and people are following me as my 76 trombones lead the big parade… of bullshit. Trouble in Blogger City. When people seem to look at me as something bigger than I am, better than I am, I really do feel like a con artist and that Shaggy and Velma and the rest of the Scooby-Doo Gang are going to tear off my mask and reveal me for the average, petty, normal person that I am and I’m going to have to say, “Yeah, and I could’ve gotten away with it, too if it weren’t for you pesky Muselings and your dog.”

Some of this is my insecurity and some of it is because I only reveal one dimension of myself on this blog. You see, this is not an entirely unexpurgated version of my thoughts. I try really hard to be honest but I also leave out the stuff that I think would be hurtful to any individuals (except for Dr. Evan Collier and Julie the receptionist. I’ve made it clear that they’re douche-bags. Or rather, he’s a douche-bag, and she’s a gate-keeping bridge troll,. I’m really proud of that insult.) But other than that, I try as hard as I can to not out the douche-bags in my life, including me because I can be a shit-sack sometimes myself. And if you don’t believe me, just ask my son.

Now I’m rambling. What else do I feel about the blog comments? I feel like I’ve touched a nerve. I’ve hit on a place that I thought was uniquely mine -- my need to find meaning and beauty amidst my suffering, but I realize now that it’s the human condition. We all want to find that. We all want to know that while our time on this earth, may not have a definable purpose, it has moments of grace. And I’m really proud that even though I’m dealing with a lot, I can still offer something to people. So when I say the blog is my lifeline, it’s not even so much about what I write. It’s about knowing that what I write is being heard and that hearing it is helpful to people. I can’t express to you how great a feeling that is.

The internet and cell phones and Facebook and texting and Twitter (the aptly named Twitter, for twits with nothing better to do but boil the complexity of their life into 140 characters – and yes, I know I’ll regret those words when I’m typing with my fucking chin…coming soon!) .All of these things have an alienating quality to me because the more we use them, the more we’re insulated from our own experience with other people. I remember when I was a busy person, feeling a bit of disappointment when I would get an actual person on the phone because I would have to go through the niceties of getting caught up rather than give them “just the facts m’am”. And so we’ve all become this culture of Jack Webb/Joe Fridays, wanting just the facts. What a major

Anyway, I find it amazing that what I think of as alienating has become a public place where we can all meet and connect with each other. It’s just astonishing to me. Even as I draw closer and closer to eschewing electronic forms of communication almost completely and just trying to hug and hold hands and snuggle with people instead; the blog is there and it’s real and it means a lot to me. You mean a lot to me. So for all the times you’ve written and encouraged me, for all the times you’ve boosted me, for all the times you’ve courageously shared something painful that’s happening in your life, I thank you from the bottom of my heart. If you’ve done nothing else, you’ve buoyed me in a difficult time and you’ve left something utterly amazing - in the real sense of the word amazing, - through which my son can remember me. Imagine him looking at your comments or showing them to his children years from now.

Can you think of a greater gift?

And you’ve given that to me.

So I can say without a trace of disingenuousness, I really love you all.


Anonymous said...

Well it *is* a lifeline. People see that I think. Leroy Sievers' NPR blog, My Cancer, was that and it became a community. Same with UK journalist John Diamond who wrote about his experiences in his column at The Times (later gathered into Because Cowards Get Cancer Too). You shine light into corners that were dark before you began writing about them. You go, girl, keep getting your message out. -Hope

Anonymous said...

All of your notes are dear to all of us. I was the one asking about what you thought about comments. I want to tell you your response was another gift to know that what we write matters...just as what you write MATTERS! Thank you for the kindness of answering my query. It is special for all of us to know that we can touch you by our thoughts, words and energy.

Your blog does bring powerful forces of love together. I think there is a metaphysical word for it but can't think of it right now.

I certainly hope there are NO negative comments passing to you. If there are you do a great job of filtering. Every word on this blog seems sincere and from the heart...yours or ours. I think I only know one other person submitting items here and yet I love everyone that reads this and sends you energy!

I have always respected your bandwidth. I wish I had known you when you had more bandwidth :-).

I think we all know this isn't THE MUSIC MAN story. We know it is YOUR story. BTW, you are not Harold Hill, BUT you are one gifted story teller...the good, the bad, the funny. You weave some wicked (as in GREAT) stories that weave your prespectives and feelings into everyone's world. This blog is just one facet of a jewel. Those that follow this thread are honored to be able to. When we write comments it is both for us and FOR you.

THANKS for the reminder(s) of who you are, both online and off.

You mentioned the internet alienating people. It can, just like any activities "could" BUT (the big but) it has also allowed people to come together locally and globally. I have a friend who had his computer at SRI as the second computer on the internet 40 years ago. I brought a visitor by his home YEARS ago who said the same thing you did. Doug Engelbart agreed and then went on to say we need to work on using these tools to bring us together again. BTW, I am not so sure about the difference now, but a few years ago there were two different patterns of use between men and women. Men would be reclusive using the net...women do what they have ALWAYS done when the phone became a tool...THEY USE THE NET TO CREATE COMMUNITY. And I think they have done a great job creating a world where us men can finally feel comfortable with community! Thanks to all you feminine souls!

Your last line in this entry is spot on again for all of us...we ALL share love with you and to the others in the group.

Your trials are beyond words for me right now, but I can say your life and your stories mean A WORLD to me.

Love back at you and your son and his children (when they join the gene pool).


Anonymous said...

And I've loved you, Carla, ever since the day in Scotty's yoga class, when you sat down on the mat next to mine, said "Hello," and smiled at me with your toothy smile as if I was a normal person, on a day when I most decidedly was not feeling like one. Rest assured, you will never be forgotten, blog or no blog.


twodognite said...

Had you not had ALS and wrote this blog I would honestly say you're a fantastic writer--really. You're witty, intelligent, and paint wonderful pictures with words--you're a writer. Because of the ALS your words are even more powerful and you show us a strength that probably even you didn't know you had, to continue to fight and try to move forward despite the the major obstacles that have been thrown your way. I think most of us look at your strength wondering how we would deal with that same hand had it been dealt to us. And for your sake and the sake of other patients seeking help at your clinic, I hope that MD and receptionist end up on the other side of the "bed/wheelchair" someday and get a taste of their own insensitivity. I have you up on my "bookmarks" and check in every few days to see if you have posted some words of wisdom/insight. And, I sincerely hope you don't have to type with your chin!!

So, did Mac get into Berkeley?

You're an inspiration!! (Kind of an ironic word, given your disease, eh?!!)


Anonymous said...

I realize I have friends I have never met and probably love through this blog. Thanks; you and your words are precious to me!

Anonymous said...

You've shared your thoughts about us, I'll share a fraction of my thoughts about you: I can't recall ever adoring someone so much who I haven't even met (maybe it is some sense of shared kinship - redhead to redhead). I've laughed with you, cried with you, been frustrated with you, and loved with you...I look forward to the wisdom you share in your posts - I take it as a reminder and a reality check.

I run marathons. So far, you have been with me through two full marathons, and countless training miles (sometimes 30-40 miles a week) - you are often in my thoughts reminding me how sweet each step is; that no matter how tired I am, appreciate that I can move forward, I can breathe in the hot or the cold air, (not to gross you out - it's a runner thing) but appreciate that I can blow my nose into the air with ease. I get a mantra in my mind "you run because you can, you run because you can, appreciate what you can do, appreciate what you can do" and I also think "do this for Carla, because Carla can't". My fellow Muselings also play a part - as they, too, open their lives for all to take in and draw strength and inspiration from as you have...

I currently have a stress fracture. I can't tell you how many people have come up to me and said how sorry they are that I'm in a boot and unable to run for 3-6 weeks. I keep explaining to people that it's okay, that there are so many people who I'm sure wish that 3-6 weeks in a boot and no running was the worst case scenario, and I smile and say that I'm really okay with taking that time off - a year and a half ago I never would have looked beyond myself to the world around me that way. You (and my fellow Muselings) are my gentle reminder, and often the ones providing the encouragement to appreciate every motion and moment. You are so much more than this small correspondence could ever convey...

I hate to wish anything terrible on anyone, but perhaps something will touch Dr. Evil and his Gatekeeper from Hell, something that hits close to home, and they will find the compassion and simple kindness that they are so deperately in need of...until them, screw 'em...

Anonymous said...

I was up in Seattle this weekend, meeting with two younguns (to me they're young although in their 30's) who are biking around the country making a documentary about sustainable communities and co housing as they seek a way to make a "regenerative" life together. We were at an auction to raise money for the co housing community and there was a special tribute given to an older man with ALS who was dying. His soul and spirit showed through his eyes as he sat in his motorized wheelchair and let in the love that was surrounding him. I thought of you Carla as the tears flowed and the love enveloped us all and I really got the concept we are all one pulsing, vibrant nerve in one vulnerable, impermanent, fragile body. And I knew you were in that room in some way as well. I believe you will always be in that room and every other room where loving community thrives, here, now and forever. Those are not just words...ALS or no ALS, you rock and roll forever. Joanna

Anonymous said...

Just looking through today's comments...gobs of love all over the wonderful to experience as one of the MOOSE-lings (not an official museling...although what are the official requirements? Perhaps we should start a Carla Fan need for you Carla to do anything but just BE.

So much love converges here about you.

Anonymous said...

Thought-controled wheelchairs: what's next?

for a little neat future/present diversion:

Anonymous said...

I hate to break this to you Carla, but you helped me get through 2 operations, chemotherapy, radiation, and living (temporarily) with a LITERAL shitbag. You inspire us because we KNOW you're Harold Hill (if you were Marian the Librarian you wouldn't be any help at all). And you've forgotten the end of the Music Man: If someone makes you hear the music of life, it doesn't matter if the band sucks.

Bruce M.(love from Moira too)

Anonymous said...

Anyone out there who watches this...please make a contribution. Carla would never ask for herself but I am...........


maggie said...

I feel like I know everyone who enters this blog... and if I don't know them then I know of them... I have so loved being part of this blog, reading the amazing things others have written, being awed by what Carla has written and wanting to march in a Parade waving a Carla banner. thank you so much Carla for what you have given me this last year, healing, love and laughter. May Mac know joy and love all of his days.

love your faithful museling,

gail hildebrandt said...

Dear Carla;

Being able to talk with each other on this blog thing is such a gift. Well I suppose the whole thing of computers has made the world a lot smaller. We never could have gotten to know each other if it hadn't been for this wonderful piece of work. I am so glad we make you happy, because God only knows you bring a lot of happiness to others. It is so true that we all would like to think that we have some moments of grace while we are here. Looking back in my life there have not been too many times, but when all the stars were aligned and something wonderful, though maybe quite insignifigant to others, happens - it is something you never forget. There has been a lot of unhappiness in my life, but so many blessings as well, so I just keep holding those precious moments in my heart - and listen to others, such as yourself and know that, "all's right with the world".

Anonymous said...


I posted your link to my extensive network. I know of two people that are going to contribute and couple of others that are going to send the link/note/request on to their networks. THANKS again for posting the are a dreamboat...even if you are taking on some water!

Anonymous said...

What "gail hildebrandt" said gave me a nice visual. She mentioned when all the stars are lined up. I could see the North Star being Carla and the rest of us "lings" being the other start that align with Carla. Thanks Gail for the imagery!