Jonathan Speaks at National ALS Conference
Update from Jonathan
September 10, 2018
If you’re new to this site, thanks for finding us. If you’ve been here before, thanks for checking back in.
Unfortunately Stacy’s disease has continued to progress at a terrible pace. When she was first diagnosed, in December 2017, she was limping a bit and her speech sounded a little funny. Like she was on pain pills.
But now, just nine months later, she not only can’t walk or talk at all, she can’t swallow. She can’t breathe.
Today marks her 12th day in the ICU at Cedars Sinai. She entered with pneumonia and will leave with a tracheostomy and a ventilator. Meaning she will now spend the rest of her days having a machine breathe for her.
Even as she has all her nutrition, medication and hydration delivered via a g-tube in her stomach.
Even as she loses the ability to move any of her muscles.
But she’s still amazingly resilient. Yesterday, when a friend asked her, ‘You’re one of the most outspoken and dynamic people I know, and now you’re forced to communicate just with your eyes! Is it terrible?’ She thought and then, using her eye-gaze letter board, replied that, while it was frustrating, and it was weird that some people treat her like a deaf mute (!) she also finds that she’s seeing much more.
I asked her what she meant and she said she is seeing people’s truths. And their emotions.
Of course, Stacy being Stacy, she continues to grow and evolve.
And, amazingly, she’s itching to get home and get back to work.
Yes, to spite her illness, maybe BECAUSE of her illness and her new insights, she’s determined to direct another movie. Others have succeeded in making acclaimed and Oscar winning films while battling this dreaded disease, and Stacy, the ultimate never-say-die warrior, wants to join their ranks. She’ll make history even as she continues making art. (In fact The Hollywood Reporter is preparing a piece on her incredible quest, due to be published in their 9/20/18 issue.)
She’s fighting tooth and nail. Pushing to live and love as passionately as she can for as long as she can. But obviously she’ll need our help.
When she finally leaves the hospital, she’ll require in-home care 24/7. And though we have great insurance, it won’t cover nearly everything.
It’s hard for me to ask for help, but doing this alone will be impossible. Anything you can send our way, money, meals, even a heart-felt message we can read to her in bed, will make her time easier. And my load lighter.
If you’ve already helped, THANK YOU. If you are considering it, THANK YOU FOR YOUR CONSIDERATION.
I’ve been staggered by this. She has been devastated.
But I’m proud to say we’re still looking and moving forward.
Thank you for your support on our crazy, terrible journey.
Really. From the deepest, humblest part of me.
Update from Jonathan
Well, here we are, six or seven weeks since we went live, and there’s been an extraordinary outpouring of love and generosity from folks like you.
It’s relieved a lot of our stress. It has warmed and amazed us.
Simply put, this situation would be impossible for Stacy and me alone. The costs, in terms of money, energy and physical health are astounding. And, unfortunately, Stacy’s genetic ALS is moving with terrible speed. Even since we went live, less than two months ago, her breathing capacity has dropped from 49% to just 25% today. She has had to have a feeding tube placed so that she can get adequate nutrition, hydration and medication without having to swallow. She now has in-home care more than 90 hours a week. She needs a bipap machine to help her breathe and a letter board to help her communicate – manually, one letter at a time.
And yet (and this is truly stunning to me,) her spirits are high.
She says her life is both scary and fun. Scary, of course because her present is painful and her future unknown, but fun because of the constant whirlwind of activity and new sensation and from a new intimacy we are truly embracing. From the sheer adventure of rolling into this brave new world. She is more alive than I’ve ever seen her.
To Stacy this is a once in a lifetime opportunity; a huge physical challenge that promises great spiritual and emotional reward. She is battling heroically; eyes open in wonder (which I know means wonderfully.)
And if you’re here, it’s because you’re behind her as she takes on this toughest of fights. I know it gives her courage, having you watching her back. Stacy is healthier and happier because of your caring presence. And your great support.
And for that I say,
From both of us.
Thank you, very very much.
A Message from Jonathan
June 1, 2018
Dear Friends and Family,
‘Welcome’ is not the right greeting.
I wish this site didn’t need to exist.
But I can say ‘thank you’ for coming. Your love and interest in Stacy have led you here – to a place dedicated to helping us cope with her new reality – living with ALS.
This whirlwind started in December and has progressed to where we are now, in June. Stacy cannot walk and has trouble talking and even swallowing. Her sleep is terrible. Her cough getting worse. Though we live in hope that some new treatment or trial will stop this thing once and for all, for now, we find ourselves on a slippery, precarious slope.
And so, unfortunately, humbly, we must ask your help.
Because even with our excellent insurance, 99 percent of her hands-on care, plus many supplements, treatments, and pieces of equipment, must be paid for out of pocket.
And, though we would like to keep earning enough to cover these costs ourselves, the disease is proving all-encompassing and has kept us from accomplishing as much as we used to (let alone the extra we’d need to accomplish to stay on top of this growing pile of bills.)
It’s a real bear.
So please, anything you can send our way will be so greatly appreciated. Time, money, good wishes, even a cough drop with some lint on it. We will use it all and do so gratefully.
Stacy is the bravest person I know. Facing this unimaginable battle with grace, humor, and tenacity.
If anyone can prevail over this dreaded, ugly disease, it’s Stacy.
With your help.
Thank you for finding us.
Thank you for helping us.
From the bottom of my heart.