Saturday, February 25, 2012

An update on Suzette Haden Elgin from her husband

Her husband George asked me to pass this along:

Hello to you all. At last I have something to report about Suzette's condition.
On the ninth of January Suzette submitted to a battery of tests at the Schmeiding Center for Seniors in Springdale, designed to determine whether she had developed Alzheimer's disease or some form of dementia. They wouldn't give us any information at the conclusion of the tests, but insisted that her doctor would discuss the results at her next appointment with him. We drove up to Huntsville ( a 60 mile round trip) for her visit on the 17th of January only to find that the Schmeiding Center had sent the results to the Fayetteville office (only 10 minutes from our apartment). 
We then made an appointment with her Doctor for the following week and found that the Neuropsychologist at the Schmeiding Center had told Suzette's doctor the they could not offer a firm diagnosis without seeing a PET scan first, and that they had made an appointment for Suzette to have one at a facility in Tulsa that they approved of! I told them that Suzette could not possibly go to Tulsa because of he Diverticulitus, and I went ahead and scheduled one at the local Highland Oncology Clinic, which turned out to be perfectly acceptable. Then we had to make another appointment with her doctor to have him tell us the final diagnosis.

It seems that there is a quite diminished hypermetabolic activity within the bilateral frontal and temporal lobes which is nearly symmetric. There is also symmetric activity within the bilateral parietal and occipital lobes


What all of this gobbledegook boils down to, is that Suzette has developed a Fronto -Temperol Dementia. A condition that develops more rapidly than Alzheimer's disease, and does not respond to any form of treatment or medication. Somedays, for hours at a time, her behavior is almost normal. Most of the time she has no problem with filling up her day. She reads all kinds of books, and sometimes reads them over and over again. We are fortunate in living near a used book store, that has a vast assortment of titles that I can buy for 26 cents apiece. I've been buying 30 to 40 every 2 or 3 weeks. She reads them all! Then I pass them on to anyone who wants them.


When we first moved here, 15 months ago, I bought her a new Macintosh iMac computer. She started off using it daily, and said she was writing a new science fiction story. After a few months she stopped working on the story, and then stopped using the computer altogether. Now She won't use it even to read or answer her email.


For Christmas She wanted a laptop computer and a cellphone. She hasn't even started up the laptop, and she can't remember from day to day, how to use the cell phone. It's a very simple one, ideal for Seniors, called the Jitterbug. She won't answer the "hardwired" phone when it rings, and won't communicate in any way with anyone except immediate family, and a very limited way at that.
No radio. No TV. No form of entertainment except her books.
I'm giving her the best care that I can. I go out every morning for an hour or so. I have a cup of coffee, go to the grocery or bank, or gas up the car. Just the essentials. She sits in her Grandmother Bertha's rocking chair and reads, or more recently, sleeps. She seems OK with that.


She keeps moving her bedtime forward. She wants to eat our evening meal at 5pm, and then She goes upstairs and goes to bed. I have tried to encourage her to stay up later, but it just doesn't happen. Then, She's awake around 3am, and I have to keep sending her back to bed until at least 5 or 5:30 am.



She hasn't left the house for anything except visits to the doctor's office for about 15 months, and I just recently asked her if she wanted me to look for a small, used RV, (that has, of course, a bathroom), so that we could go for daytime drives or even short overnighters. She thought about it for a few days, and much to my suprise, said,"Yes,I'd like that very much". I waited a few days and asked again, and then again, and each time I got the same answer. So I did it!


Maybe it will be therapeutic to get her out of the house for short periods of time. It surely can't hurt. We could even go to someone's house and ask someone to come out to the RV and visit for a few minutes….. Maybe? We'll see.


I've rambled on for long enough. I've just tried to answer a few questions that I've been asked over the last year. The sad part is, She's just not ever going to get better. but I'm trying to make her days a little brighter. .


Thanks to all of you . . Family and Many, Many Friends.


George

23 comments:

Andrew Porter said...

Thank you for this update. I will send the link for this page out to my list of SFnal news blogs and interested parties. I have this weird link to her, dating back to the F&SF slush pile, where is saw SHE's submission, passed it to Ed Ferman, and the story was published. Can that really have been more than 40 years ago?

Gregory said...

I suggest you get her this supplement:
stemcell100.com
It has proven useful in neurological disorders in several of our trials.
Please wish her my very best.

Gregory Benford

Mercedes Lackey said...

Oh Stephen, I wish I could offer anything more than support and profound sympathy. Susan has always been one of the authors I admire most. Love and hope to you both.

Mercedes Lackey

Stark Radio said...

Suzette wrote some of my favorite books. I am so sorry that this illness has taken hold. My deepest sympathy to you both....

green_knight said...

I'm one of the people who read Suzette's posts on Livejournal, and I want to pass along my best wishes and to wish you both strength in difficult times.

Corgi said...

I'm just a passing fan and am so very very sorry for both of you.

Zette said...

Thank you for updating all of Suzette's admirers with what is happening in your lives. I wish both of you joy in each moment.

Suzette Haden Elgin was the best kind of inspiration that I needed as a child. Having been graced with the same name she inspired me to read and developed my love of science fiction.

I know you probably don't need them but I would be delighted to send books if possible. Please contact me if you are so inclined.

Suzette Mariel

Anonymous said...

George,

Consider reading about and trying the Gerson Diet.

My best to you and Suzette

Quiltilicious said...

Stephen, I found this rather late, and I am hoping all of you are coping and getting on with daily life. I have never met Suzette in person, but her words have saved my life and gave me the tools to repair the relationship with my parents so I could willingly and lovingly help them through their final years. You all have my best wishes. Thank you for letting us know how she is doing.

Mia Shinbrot said...

Oh, dear. I've read her LJ on and off, as well as reading many of her books, and I admire her immensely. I was trying to recall a particular verbal attack pattern and searched for "verbal self-defense," only to happen on this. I'm very sorry you're both going through this ordeal.

Anonymous said...

My deepest sympathies. I have relied upon her books so much in my life. They changed me from a person that was bewildered and abused to someone in control of what I will allow someone to say to me or not. She has empowered me to recognize abusers and RUN LIKE HELL...to not care if their bait sticks, and to defend my self eloquently, gently, and powerfully. She is a great lady. All the best to you for your kindness and patience. I hope you are coping well and you have support.

Susan Lowell said...

Thanks for this tough update. I'd wondered why she had not written back lately.

I dearly hope the RV trips trigger healing mechanisms in the body--I believe healing may always be possible!

Is anyone managing sales of The Training Manual for the Gentle Art of Verbal Self-Defense . A complete business in a three-ring binder. 125 pages; $33.00.?

Suzette had told me about it but I did not buy it in time!. I teach GAVSD at a mental health /substance abuse recovery center and it goes over BIG!

Thanks to all of you!

Rachel Federman said...

Thank you so much for updating us. I've often wondered about Suzette. I had the pleasure of working with her when I was an editor at B&N about 5 years ago. We were doing a reprint of The Gentle Art of Verbal Self-Defense and she was unbelievably thorough with her revisions and timely with her responses. I never worked with a smarter or more productive author in my time there.

I got to "know" her a little bit, through emails and her blog. She is inspiring. I am glad she is reading and that you might take trips.

Anonymous said...

Suzette's blog, ozarque.livejournal.com has some wonderful material. I paid for a year's extension last year, and plan to do it again this year. If it needs any maintenance, I'd be happy to do that if I may have the password. My email is houseboatonstyx@gmail.com

God bless you both.

Mary Ezzell

Ibu Jen said...

I'm just a fan. One who loves language and feminism and sci fi, and has shared my Native Tongue and Judas Rose over and over, with glee and delight and mischief. Today I happened across a post for 20 words that are impossible to translate directly to another language from www.matadornetwork.com (The Scottish word Tartle, for example, The act of hestitating while introducing someone because you’ve forgotten their name. Love it!). Of course my mind and heart leapt back to Native Tongue. I wanted to write to Suzette. Sooooo sorry to hear that her wonderful brain has been savaged in this way. Pass on my love if you can, if not, use it to help patch up your own dear heart in this appalling time. Hugs from Jen in Bali.

Shirley Rush said...

Suzette was my best friend at SDSU.I have thought of her often and by chance looked at Google today. I am so proud of both of you. I am still in Laguna Beach and will help in any way I can.

Shelly said...

I was in the process of researching verbal self defense material and came across Suzette's book as well as this update from her blog. My deepest sense that I'd like to express is that Suzette has left quite a legacy. The reviews of her work seemed to have helped a great many people and I hope she knows that in her heart. Her mind may have 'betrayed' her but not before her brilliance was unleashed out into the world and continues to ripple out and touch many future generations. Thank You Suzette! And, Blessings to you Stephen!

Shelly

TWH said...

Stephen, thank you for sharing this, and if it's possible to share this back to George, I would be grateful.
George, I've been trying to find updated info on you and Suzette for over a year and finally chanced on this forum today -- I hope you read it, but am not sure since the postings are from so far back. Now I know why none of my emails were answered, and my snailmail came back as undeliverable. Please let me know if there is anything I can ever do for either of you, and know that you are in my thoughts.
Best,
Teresa Haven
at
asu dot edu

Anonymous said...

Dear George, It has been years since I have been in touch with you and Suzette. I am deeply saddened to here of her condition.

I wish I had a cure.

Tomorrow, Aug 9 2013 I will be doing a VSD overview course to Safety Professionals.

Although Suzette may not understand at a conscious level, I believe that subconsciously, she will be comforted to know that her legacy lives on through myself and the others who have been touched by here work.

Wish we could be in contact in person.

You and she are in my prayers.

Robert Layton, Lethbridge, Alberta Canada.

"Orange Mike" Lowrey said...

This is heartbreaking for all of us who've known and loved her over the years, from WisCons to LiveJournal. She and her husband are both in our prayers.

"Orange Mike" Lowrey said...

This is heartbreaking for anybody who has ever known that brillian mind, be it a conversation at WisCon or reading her books or following her LiveJournal.

They are both in my prayers.

lmg said...

howdy, stephen. i know something about what you are going through. both my parents succumbed to this type of dementia, and i have another very close friend going through this as we speak. you hang in there and keep her comfortable. like many others responding to you, suzette's works saved my life and redirected my work. i think of her - and you - often.
my very best to you both.

best,
lmg

M N PAULL said...

I just want you to know that I am about the same age and have been a fan for years. I have just ordered a new set of Native Tongue which somehow is borrowed and never the same again, or never returned! I found this blog by sheer serendipity and wish to convey my love admiration and heartfelt thanks to a great woman.

M N PAULL