Linking Hands for Anthony

For: Anthony Weller
Organizer: Friends of Anthony Weller
$473,349
of $500,000 goal.
Raised by 997 donors
94% Complete

The Story

Thanks to your donations, in addition to receiving near round the clock care, Anthony has been polishing his Mozart novel and has been inspired to begin work on two other books, including a young-adult novel. Despite his circumstances, the highlight of his day is the time he dictates. As his voice has declined due to his disease, he is learning to use Eye Gaze technology which allows him to slowly type and communicate through a computer using only his eyes. We still need your generous support. (Updated 12/17)

Illness

In 2002, Anthony experienced the first symptoms of Primary Progressive Multiple Sclerosis. This is a very aggressive variety of the disease. Non-episodic, relentless, it never goes into remission. Shortly after his guitar technique faltered, Anthony needed a cane to walk, soon could no longer stand, then became chair-bound. Only his mind is untouched.

Musician and writer

A native of Georgia, Anthony Weller began his two careers at Yale. Until 2000, he was a busy guitarist and a writer. Magazine journalism paid him to roam the world for two decades. Seven books (four novels, a travel memoir, and two volumes of WWII history), and fifteen jazz and classical CDs bear witness to his productivity. See his websites: anthonyweller.com writeweller.com


The writer today

No longer a guitarist, Anthony remains a writer. He dictated his last three books to software; now he dictates to a typist, two vital hours a day. His latest novel takes place in the competitive 18th century musical world of Mozart. He has more books in him. With your help, his voice may continue to be heard.

Anthony’s needs

Anthony needs constant assistance; his wife Kylée, a yoga therapist, had to abandon her working life. The Massachusetts State health plan covers only part of the increasingly extensive caregiving costs, and the Wellers have exhausted their resources. But beyond basic human needs, a writer must continue to write. Adaptive computer technology, operated by mouth or head movements, will support Anthony’s work even as his body weakens further.

Our fundraising goals

We have worked with the Wellers to determine the cost of their needs following consultation with two professional care managers and a detailed compilation of actual 2015 expenses. In 2014, we budgeted $115,000 a year for three years, with an initial fundraising target of $300,000. The actual annual cost of their needs is likely closer to $120,000 a year and we intend to continue annual fundraising efforts beyond our initial target in order to insure proper care for Anthony. Gifts will flow through the YouCaring website to The Anthony Weller Trust.

Please note there are no mandatory fees due to YouCaring beyond a standard 2.9% credit card fee deducted from the donation received; to make your own decision regarding any Optional Payment to YouCaring's fine efforts, including “0”, please click on “Edit this amount” at the Donation page.

Give Now

Gifts may also be mailed directly to the The Anthony Weller Trust, Attn: John Weston, Trustee PO Box 416 Byfield,MA 01922. If you would like your name to be listed here for your mailed donation please indicate so when sending. Donations by check will not be subject to the 2.9 % credit card fee.

There is no tax benefit to the donor associated with a gift.

Please Give Generously


You can also support Anthony by purchasing his books as well as his jazz and classical guitar CDs at his web site www.anthonyweller.com

Fundraiser Updates

Posted on February 7, 2018

Posted on February 7, 2018

A Letter from Anthony:

Dear all,

Here’s where I am, in February 2018:

More thankful than ever for your year-end donations, which have exceeded all expectations and make the next few months possible. We can stay comfortably in our home a while longer, we can pay my typists two hours a day six days a week, we can afford better caregivers. 

I find myself in a peculiar situation. All my life, like most of us, I thought about dying in terms of a swift dramatic calamity to be avoided: a plane crashing, a car accident, a lightning disease. At sixty, I rarely find myself in that kind of peril: I never take planes, I avoid having my wheelchair pushed across the street where a piano might fall on me, I avoid infection. 

But the last ten years have greatly enlarged my notions of health. I realize as never before how large is the gulf between ill health and good. The transition can be slow, and the journey lengthy. It’s been that way for me. I cling to the abilities I still have. To breathe deeply, to think clearly, to love ably and well. They make me human and define who I am. 

I’ve watched my health gradually get pockmarked in a hailstorm of numbers. Eight years since I last went for a walk (albeit using a cane) with my wife. Eight years since I last touched a guitar. Seven years since I successfully wrote my name. Five years since I turned the pages of a book. Three years since I scratched my elbow. One year since I spoke normally, though faintly. Sometimes it takes a long time to lose one’s health. 

The set of numbers that I keep most clear is of your generous donations, which have kept my wife and me alive and at home for three years now. The alternative would be horrible for both of us. Thanks to you, I have kept living, kept believing, kept writing, kept loving. Kept thinking. Kept human. 

I’ve been slowly learning my way around my new gadget, an Eyegaze computer, outfitted with a camera that tracks one eyeball at a time and allows me to type by choosing letters with that eye. It’s paid for ($16,300) by Medicare to keep me communicating. This is a vocation; and it’s hard to teach an old dog new tricks. The sad fact is that I can no longer speak very audibly. My daily typists, and my caregivers, are forced to lip-read much of the time.  

With luck I’ll soon be able to type with the Eyegaze a little faster and a little more reliably. It’s theoretically quite easy, though my multiple sclerosis has given me jumpy eyeballs which don’t do a good job of decisively choosing a letter. 

The important thing is to stay optimistic even when you know that things won’t get better. I am still alive, still myself, still thinking, still writing. I still enjoy music. I still enjoy the daily joyous company of my wife. That’s a lot. 

Love,

Anthony


Posted on May 18, 2017

Posted on May 18, 2017

Letter from a Caregiver: Anthony's Team

Dear friends,

I wish I could invite you all, just for one day, into Kylée and Anthony's home to witness what your gifts provide for him. You'd see Mariah or Gabby washing his face, prepping his lunch, or setting up the typist's desk just-so for his daily dictation. You'd see Tyler's gracefulness (he's a massage therapist) and graciousness as he performs Anthony's daily stretches. You'd hear me puzzling out loud about how to modify his cough medications so he'll sleep better.

And, of course, you'd see Kylée's constancy, her dedication to making Anthony's care the best it can be in the midst of sleepless nights and challenging days. You'd see their fierce insistence on a good marriage.

At the center of this dance is Anthony. His insatiable curiosity about our lives, and everyone else's. The thoughtful emails he dictates to old friends, one word at a time. The hours he spends reading and commenting on Gabby's college papers, or my hopeful essays. Kylée and Anthony both invest in everyone they meet.

Here's Mariah: “Anthony has become a dear friend to me. He's a phenomenal teacher and mentor. I'm grateful to be able to do what I do and have this time to spend with him.”

And Gabby: “Anthony is amazing! His uplifting spirit and humor is what makes working wonderful. He's always teaching me something new.”

And Tyler: “Working with Anthony has been one of the most life-changing experiences I've had in my 24 short years on this planet. It's inspired my decision to pursue a degree in nursing and become a Registered Nurse.”

I wish you could see, too, what I see in Kylée and Anthony's faces when a friend unexpectedly sends a gift for Anthony's care. They're always moved. Sometimes in quiet moments, even on discouraging days, those gifts become a reminder that they're not alone.

Many thanks to those of you who have continued making our work – and Anthony's life and writing – continue to be. Every donation makes you a supporting member of this team.

With gratitude,


Posted on November 9, 2016

Posted on November 9, 2016

Anthony Weller, his wife Kylee and our You Caring effort to support them as Anthony fights MS and continues to write wonderful books is featured in the Phillips Exeter Academy Bulletin's latest issue. Read the article here

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