Saturday, April 17, 2010

Maclen Muses: A quick update

Hi Muselings, it's your best friend Mac, writing to give you an update on how Carla has been lately, since it has been a while since her last blog. If you are expecting razor-sharp wit, astute analyses of life and current events, or some deep spiritual crap, this is probably the wrong blog post to read. Just kidding, whenever I open my mouth, or keyboard, as the case may be, it is deep, witty, and razor-astute (yeah, I just made up a compound word. Deal with it).

The first, and most important thing you need to know about Carla's current physical state, is that the 'S' key on her keyboard is out of commission. Now, it was one thing when she lost her ability to walk, and another thing when she lost her ability to croon like so many songbirds, but imagine losing your ability to pluralize! I am typing on said keyboard, and it makes me feel like my mirror motor neurons are firing. Anybody who both reads Daniel Goleman and ALS literature will get a minor chuckle out of that sentence.

In seriousness, Carla isn't doing all that well. She is no longer really capable of eating, and has made the decision not to get a feeding tube either (note that even if you were to convince her otherwise, it is too late, so save your well-crafted arguments for your next pinochle dispute). Additionally, she is rarely able to get out of bed, though she was able to do so for her father's surprise birthday party yesterday. For possibly the last time, at my urging, Carla wailed on a piñata like there was no tomorrow. Not that she didn't have evidence that there was a chance of there being no tomorrow.....Perhaps the most amusing part of her frail attempts to hold the bat between her legs while swiveling the chair left and right, besides the fact that she still did a better job than Kathy Sprague, was that her lovely caretaker Mayra, who was holding the string to which the piñata was fastened, has never heard of the "handicap for the handicapped" unspoken rule in athletic endeavors, and moved the piñata up and down like she would for a healthy person. I, of course, dominated the piñata game, but I won't write about it, not because it isn't enthralling, but because I'm sure that you each have a mental image of me swinging a bat at a piñata that I don't want to ruin, because I probably didn't have quite as sosa-esque a performance as your projection of me had.

While there is no way to know with ALS, Carla is certainly in the last stage of her life. She is not in a great deal of pain, due to the 21 drugs she takes (most of them prescribed...), specifically the methadone, which she says is like having a layer of cellophane between her brain and her consciousness. Which is something that she would never say, she points out, were it not for the bevy of drugs she takes. She additionally planned a surprise party that she forgot she planned, and sang frosty the snowman with no remembrance of doing so. Do not despair, however (well, okay, you can despair a bit, but not about this!) as these effects are solely due to twenty-first century pharmaceuticals, and not Amyotrophic Lateral Sclerosis.

The basic bottom line, all Macky charm aside, is that, since she can't eat, how long she lives will be determined by how long she can keep swallowing. She hopes to continue swallowing until at least the summer, but certain medical professionals indicate that such a hope may not necessarily be met. She spends most of her time in bed now, and it is, as you can imagine, a very difficult time for her and those who love her.

Send your thoughts her way, and I'll keep you updated. Just because I'm writing this update, however, does not rule out future blog posts from her. She is working on a blog post currently, but she is doing it by herself, so it takes a long time.

If you're feeling down after reading this, Carla would suggest watching this video to cheer up:


Anonymous said...

My thoughts and prayers are with your family. I wish you all the very best. Despite all the rough times you have been through, your posts always give me a chuckle, while also managing to jerk some tears out of me. I love you, Carla (and Maclen)!! You both have been such an inspiration to me. I was very sad and speechless after reading on Carla's health. Thank you for showing me that there is always a positive side to everything. You have brought the attention of ALS to me, and I've never known of it before, and I'm grateful to know about it firsthand. Please tell your mom that she has changed the lives of so many including mine!

Anonymous said...


While you are not a "prayer", please know that I am praying for you. God Bless you. May your final days be filled with friends, family, peace and love.
Thank you for your brave and honest blog that has touched so many (including me.)


Anonymous said...

Dear Mac and Carla,

I am keeping you in my thoughts every single day. I would pray for you, but "a" I'm probably an atheist and "b" you probably are too.

I am picturing Carla's atoms being liberated from her body and whatever mysterious aliveness that persuaded those otherwise inert atoms to lend themselves to Carla for these years, I am picturing it finding a new place to create hi-jinks with a new set of atoms.

Carla's old atoms will become one with the sun. Carla's spark will go somewhere, I don't know where, but, like the little prince's fox who was happy just to watch the wheat, I will see Carla in all the places where atoms gather to create life and when I see mischief, I'll always wonder if that's Carla's spark.

I love you, Carla Zilbersmith. You have been my hero for a long long time. I hope you have laughs and joy and no more trapped arms or choking for all the days that your atoms remain committed to you.

Mac, I'm proud of you, and when you run for public office, you already have my vote.

Kim Porter

Anonymous said...


In your too-short life you have touched and changed so many people, including me. Most of us can only hope to have that effect in the world, even if we live 100 years.

Be at peace in your remaining days. You are never far from my thoughts.

Anonymous said...

Dear Carla, family and friends. I live in Norway, almost on the opposite side of the world from you. Still, I've been following your blog for years. My mother is now in the final stages of ALS after a long and hard struggle. I want you to know that your insight, wit and houmour which you have shared through your blog, has made this difficult journay easier for me. My toughts are with you and your family and frids.

Anonymous said...

Carla, like Kim said so beautifully in her comment, I have been seeing you everywhere these days -- when I see friends together, when I hear laughter, when I haer a beautiful voice raised in song, when I close my eyes at night. I know I will always see you, and you will always be with me. What treasure you have brought to my life, starting back when we were just little girls. I love you.


Anonymous said...

thank you, carla, for all that you are, all that you have done, all that you have given to all of our lives.

and mac, thank you for writing this today. you have been blessed to have a wonderful mother. and it is clear that you are an amazing young man.

we love you, dear ones...

Anonymous said...

Dear Carla and Maclen My mother Mary Greig, 70 years old, is at the top of Kala Pattar in Nepal on a pilgrimage to Sagarmāthā (सगरमाथा) meaning “Goddess of the Sky”in Nepali or Chomolungma meaning “Goddess of the Universe” in Tibetan(Mt Everest).She left just after I spoke to her about the amazing presentation I heard you both give at"A Night of Gratitude". Eternally grateful for your incredible generosity Carol West (One of Gina's students)

Anonymous said...

Thank you for your honesty. We all wonder every day how Carla is and this leaves us knowing. I appreciate the simple truth and the ability that you and Carla both have in telling it.

Anonymous said...

Dear Carla,
You are an inspiration to so many and your gift will continue to be felt by all of us.
All my love,

Anonymous said...

I will miss you when you're gone, Carla. You have meant so much to so many in this world. Everyday I go to my computer; check my email, my facebook page and my Carlamuses bookmark. You have become like one of my children. Peace be with you and all of yours, honey.

Kim's Mom

Anonymous said...

Thanks, Maclen, for updating us. It is perfectly fine, of course, for you to eschew spirituality in favor of humor but I hope it is also fine for me to experience spiritual inspiration in Carla's unfolding story.

I get to be me, right?

I am not really a prayer . . . but I send Carla love, and you too Maclen. . . and all the people in orbit around Carla and Mac . . all of you are a pulsing love organism.

Thanks for giving me an image of Carla trying to break the pinata and of her attendant holding the pinata away from her.

magggie said...

thinking of you Carla with love and appreciation for your blogs.


Anonymous said...

Carla, you have given me so much in the 18 years I have known you. I thank you deeply and truly. You know how much I have always loved you. I make this pledge: every year you will be honored at my college through the scholarship and your name and consciousness and message will infuse everyone who stumbles upon it with LIGHT. You healed us all in your own unique way. You are an angel on earth. With a peculiar devilish grin. The absolute BEST kind there is. Love you always, Joanna

Anonymous said...

You are an incredible gem. Through your wisdom and humour you have given such a rare gift to many, many people. I wish you peace and pure joy as you spend your final chapter here and when you ultimately pass from this existence on into the greatest mystery facing us all. Your essence and echo will last among us here for a very long time. In the words of Van Morrison - let go into the mystery. When you are free from the body that is failing you, go with the tethers of love keeping you connected to people remaining behind.


Anonymous said...

Carla, my dear, sweet, talented, beautiful friend...when I was a child, I chose the middle star of Orion's "sword" as my home star—the place I would go to be reborn when my time on this planet was finished. Recently, astronomers have discovered that this is the exact place where new stars are born! So let's meet again there...I'll look for you, you look for me. We'll write some crazy songs and sing some fabulous duets.

Marie Cain
(Second star to the right and straight on till morning)

Hugo said...

Thank you for the update Maclen---Carla (and Maclen) You're in my thoughts all the time...

Anonymous said...

Dear Carla,

I haven't been commenting but I've never missed reading one of yours or Maclen's blogs. This blog has helped fill a void in me that you as a teacher, mentor, and friend used to fill first hand. I've missed you so much, but I know how lucky I was to have you in my life for a time.

I love you Carla. I'll always love you. You are my hero & you will live in me and countless others forever.


Anonymous said...

Thanks for the update Mac! Your mom is amazing!