Stories From A Life

Been there. Done that. Writing about it.

Sally Swift

Sally Swift
Location
Philadelphia, Pennsylvania, USA
Birthday
June 14
Title
VP, Repartee
Company
Swift Retorts
Bio
sally: a journey, a venture, an expression of feeling, an outburst, a quip, a wisecrack ... me

MY RECENT POSTS

MAY 7, 2010 3:25PM

My Mother Lights The Way To Hope *Update: AMD Info

Rate: 20 Flag

 

charlotte
 

"Hope sees the invisible, feels the intangible, and achieves the impossible." Helen Keller 

 

Our family's had more than its share of heartache, but we've also been blessed with strength and courage beyond the beyond. Especially Mom.

I won't be with her on Mother's Day this year, so I want to pay her this tribute. She's an inspiration and a role model, not just to her family, but to all who know her.

I've told some of her story here. This is the chapter that brings us the most pain. And pride...

Twenty years ago, on a sunny Florida day, my parents were on the golf course. Mom was lining up a putt when she looked down and saw two golf balls instead of one. Looked up and saw two flags instead of one. She blinked, the images merged and she made the putt.

In the back of her mind though, cold fear. Darkness was crouching, ready to pounce.

A week later, sitting at her make-up mirror she closed one eye to apply mascara -- and her face disappeared. Replaced by a dark blur with a halo of light around the edges.

Panic set in as she opened and closed each eye, one at a time. Light. Dark. Light. Dark.

Just like that, her world changed forever.
She knew she had inherited her mother's sight-stealing disease.

amd

Left, normal vision. Right, macular degeneration.

My late grandmother suffered the devastating effects of Age-Related Macular Degeneration (AMD) for years. Now it was my mother's turn. Tests soon confirmed that she too was slowly, inexorably going blind.

My mother's a fighter. Hope trumped panic as she sprang into action, determined to find the "magic bullet" that would save her sight. For five years my parents traveled to doctors around the country, and then the world.

Always the outcome was the same -- nothing could stop the disease that was stealing her sight. There were treatments that would slow its progression, but no one knew for how long.

She tried them all. She used every weapon in her considerable arsenal to get herself admitted to research studies and clinical trials. She submitted to laser treatments, surgeries, new and experimental medications. Some worked, some didn't.

Every treatment that seemed successful at first, eventually failed. So finally there she was, facing the encroaching darkness with no viable options and no hope.

That's when she began a new fight. She found out who was doing the most cutting edge work toward a cure --The Foundation Fighting Blindness (FFB)-- and threw her support to them. She started attending meetings, met researchers and staff, began to formulate an action plan.

She recognized that the large elderly population of South Florida offered a strong potential donor base. Using her marketing savvy and personal connections she created the first Palm Beach County Chapter of the Foundation Fighting Blindness.

Then she mobilized friends and family to help put together fundraising events. She organized a symposium on Macular Degeneration, attended by scientists and more than 600 people affected by the disease.

She and Dad formed a committee and put together an annual golf tournament, Swing For Sight. It's now being held in communities around the country. Auctions, luncheons, dances, bridge tournaments too.

char ffb

No surprise, she's on the FFB national board now. Even as her vision continues to dim, she continues to work tirelessly raising money, awareness and, most of all, hope.

Because this is a very personal quest. AMD is hereditary. We will get it too. She wants to make damn sure there's a cure in our lifetimes, if not hers.

My mother can't play golf, drive, cook, read a book or a clock, enjoy a movie or a sunset. She can play bridge with oversized playing cards, very bright lights and a large magnifying lamp. And, some days, a little help.

Her home is filled with beautiful artwork. And more precious to her, pictures of beloved children and grandchildren she can no longer see.

Yet even in darkness, she continues to believe in the light at the end of the tunnel. And brings her shining spirit to guide us all, every single day.

Happy Mother's Day, Mom. You are the light of our lives.


 

Please. Join me in sending healing light, warm wishes, good thoughts and prayers to Judy and Karen too, for the happiest Mother's Day ever.

This Mother's Day I think of Mom's pain. I think of my sister Judy and her brutally unfair pain. I think of Karen, fearing this Mother's Day will be her last.

The mother's heart inside my chest is breaking. For them and for every mother who knows what no mother should ever have to know. Ever.


MACULAR DEGENERATION INFORMATION & RESOURCES 

AMD typically presents after age 60, but can strike earlier. Even if you're in your 40's, it's good to have a baseline. If you're 60 or older, get tested every year by a retina specialist

Macular Degeneration Homepage

Specific Information about Macular Degeneration.

Locate Libraries for Talking Books
 
(US and Canada)

Home Page of the National Library Service for the Blind and Physically Handicapped

My mother loves her talking books. They're free, come with two free players, one for home, one portable. The book cassettes are sent in postage-free plastic cases that can be dropped in any mailbox.

Every library is different, but she gets the latest releases. Unless your parent or grandparent is very tech savvy, this is the way to go, especially because the equipment is designed for the sight-impaired.

audio books

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Comments

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I wrote a version of this long ago and far away. This year especially I want more people to know her special story in our family's seemingly endless battle for health and life.

Happy and Healthy Mother's Day to all.
This very touching to read Sally. My mom had this also. I did not know it was hereditary. Soooooooooo
Damn blurry monitor. Your mom is inspiring and this is a beautiful tribute. Best to you and your family, Sally. Happy Mother's Day.
All the best to you and your very special mother, who has inspired me just now!!..
Sally, this is a beautiful and inspiring post. Thank you for sharing it.
~R~
This is a wonderful tribute. My mom also had it. One of the reasons I want to read everything I possibly can for as long as I can.
aka, please, go to a retina specialist for a check-up. It doesn't usually strike until around age 60, but if you're under that at least you'll have a good baseline.

mginmn, thank you, Mom did all the work. Best to you and yours too.

Gary, your mother is exceptional and inspiring too. I remember her story and loved living it with her again. Mine will be 87 next month, still going strong.

Unbreakable, sorry I haven't been around to welcome you back. Very glad to see you!
A beautiful tribute to your Mother, Sally. Thanks for sharing it.
Sally, I keep trying to rate this and it won't register.
This is so touching. Sight is something no one should ever taken for granted. Thanks for sharing this beautiful story. R.
Mimetalker, please get tested. There are so many new treatments available now that could have helped preserve my grandmother's or even my mother's sight.

Fay, thank you. And thank you for trying to rate. Sometimes you have to refresh the page, sometimes it's not meant to be. It's the reading that counts. :)
Bernadine, thank you. And honestly, my greatest fear has always been blindness.
Your mom has obviously passed that steel on to you. Happy mother's day to all of the moms in your family, Sally. May it be a healthy one, too.
My heart aches for the all the mother's who are suffering. Karen, who you have helped me know these past months, contemplating her last year as a mother is too heartbreaking. Love to all. I wish I still had a mom....
(Whew, Sally ... I thought you'd disappeared on us.)

AMD is vicious. Both my father and father-in-law have it, and it's heart-breaking, especially since both are/were hard-core book readers.

Please convey my best wishes and my hope for her success to your Mum.
My mother is suffering from AMD. My sister worked for a retina specialist in Tucson so mom is getting the best of up to date treatments - shots - etc. it's slowed it but she can't read, etc. just what you said about your mom. I've told my Eye Dr and he said I was fine...now you got me thinking I should go to a retina specialist!
My heart goes out to Karen & Judy also. There are worse things than blindness.
you don't need me to affirm that your mother is a remarkable woman, but I'm saying it anyway

may you have a good Mother's Day
Thank you for this informative post Sally!
rated

Happy Mothers Day
beautiful post, Sally. I love courage in the face of adversity, I really do. I love your Mom for seeing what needed to be done in the wake of her own situation.
And I'll think about others too, as requested, on what is going to be a long weekend.
Bill, you're so right, my mother's fighting genes are alive in me, tg.

Spud, thank you as Always for your kindness. I'm sorry you don't have a mom but you've got lots of surrogates right here if you need us.

B1, (thanks, am still here, just, you know, sometimes focused elsewhere). To you and trilogy, I'll keep saying this: If a parent has AMD, get tested! So many comments about parents with AMD, I've put the rest of the info at the end of this post.

trilogy and B1, you should also know about talking books. They've saved my mother's sanity. I'VE added that info into the post too.
Thank you so much for this, Sally. An important message, a wonderful tribute.
Roy, thank you for saying it anyway. I'm proud to be a good mother myself, following her example.

Poppi, thank you! I hope there will be no eruptions except joy on Mother's Day.

aim, thank you. I wish we had less practice with "courage in the face of adversity," but at least Mom set an excellent example.

sixty, thank you too. I just had to say something positive for a change.
Happy Mother's Day to you Sally, your mom and all the moms on OS.
Quite a woman . . . you inherited a great deal from her, no doubt. Especially the strength, and "can do" action planning, and overall grace. Happy Mother's Day!
What a heart-wrenching and heart-warming post Sally. Much love is going out into the ether for all those you know who are suffering. I am so thankful their are mom's like yours in the world.
My mother also suffered from Macular Degeneration. Mom is 87 years old and she takes care of my youngest grand-daughter Sara. My best wishes to all mothers for this Mother's day.
You can be so proud of your mother. What a touching tribute!!
Lea, HMD to you too, with your wonderful sons and beautiful grandchildren. You set the bar high for all of us.

Owl, what kind things you say, if I blushed I'd be blushing. I hope I inherited those things from her.

Sparking, thank you for the loving words and thoughts, we're all grateful for them. And for Mom too.

Oldenough, it sounds like your mom's an inspiration too. Mine will be 87 in June.

zanelle, I am proud. She's been a role model for us and for so many of our friends, that's why I wanted to share her with everybody.
It's great that you are publicizing AMD treatments and research. Writing about your mom is a cool way to get readers. I think this kind of activism is one of the most wonderful things we can do with our blogs.
You and your mom have such lovely smiles! Thanks.
I first learned of macular degeneration when a friend suggested I might like to earn some extra money helping out a woman he knew who had it. She was a maverick, had skippered her own 70 ft. yacht all over Florida and the Bahamas and had a world class collection of shells -- that she could no longer see very well at all. I made it possible for her to live independently a little while longer, and I surely enjoyed her company. I did not know that macular degeneration is hereditary.

I hope your mother's dream becomes a reality and there is a cure for this tragic condition, and you will never have to suffer the dimming of the light Sally.

Sometimes I read your posts and wonder if this isn't some reenactment of Job being visited on your family. I know it is Mother's Day and they get all the special attention today but I sincerely wish for your entire family happiness AND good health.
What a beautiful tribute to your mom. She is a remarkable woman, and living proof of how to turn a negative into a positive. You may enjoy my Mother's Day poem I posted on my blog. Thank you for your article.
geezerchick, it's all about the AMD...

Nola, I just realized our smiles are similar. She looks pretty damn good for 86, eh. I hope I inherit at least That.

Ablonde, I wish I'd seen this sooner, but I've seen it now and am touched to the core. We do seem to have more of our share of hardships (and I haven't even chronicled half so far), but maybe there's a balance there... we've been lucky enough to have SO many joys and blessings.

Dave, sorry I missed your comment too. Mom has always been inspirational in showing us how to turn a negative into a positive.