I Am Desolate

Survivors of Incest Anonymous Phone Meeting
Every Wednesday morning by telephone
Noon Eastern Time
11 AM Central Time
10 AM Mountain Time
9 AM Pacific Time
This Twelve-Step telephone meeting is for people with “DID and Internal Fragmentation.” Ritual abuse survivors are welcome.

Many RA survivors have been in Twelve-Step programs other than Survivors of Incest Anonymous  – Alcoholics Anonymous, Narcotics Anonymous, Over-Eaters Anonymous, Adult Children of Alcoholics/Dysfunctional Families Anonymous, Co-Dependents Anonymous, or Sex and Love Addicts Anonymous.

Some of us who have become aware of our pasts thirty or more years ago were in Survivors of Incest Anonymous meetings for ritual abuse survivors before the backlash forced so many back into silence. Those meetings were a source of strength and sanity and are sorely missed.

So it makes me very happy to know that there is an SIA “DID and Internal Fragmentation” meeting open to RA/MC survivors. Information on phone meetings, along with the phone number, is at https://siacominghomephoneline.org/

It would be wonderful to have at least one more meeting, preferably on the weekend, for those who work or need to plan around children. In cases like this, more is truly more!

Anybody who has been in SIA for three months or longer can start a meeting. Alternately, anybody in ACOA for three months or longer could start a DID and RA/MC survivor-friendly meeting. Does anybody reading this qualify? Would you like to start one?

If this happens, let me know, and I will help spread the word.

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I Am Desolate

I’m losing my vision slowly. I diagnosed myself with macular degeneration about twelve years ago and was officially diagnosed ten years ago. The progression was slow, and my attention was more focused on cataracts, which I have had removed.

The rate, however, has speeded up recently. Although I have (I hope) many months when I can still read, it has hit me hard. I can read real books, with their crisp pages and lovely smells, articles on the Net, emails, things I have written. I can see original art, reproductions, cartoons, colors, trees, buildings, all sorts of things. I can see the faces of those I love and those I know only through ZOOM or photos. But there will come a day when all that is lost to me.

I imagine I will cry and read through the tears for hours and hours. Perhaps I can get all the crying done now and still have time to learn how to write with dictation software and read with a screen reader. If so, I will still be able to do the things that are the most precious to me. I will just have to do everything in an entirely different way.

Assistive technology for people with low vision is wonderful, and it will only get better year by year. Right now, there is even a low-vision app on the market that recognizes faces and tells you who is standing in front of you!

Here’s the medical scoop.

I have age-related macular degeneration (AMD) in both eyes. The rods and cones, cells that recognize light, are clustered on a layer of tissue at the back of the eye called the macula. Over time, they are damaged, mainly by UV light, and die off. It starts at the center of the macula. More and more cells die, and the spot that is deteriorating becomes bigger and bigger.

So, at first, there is a small area in the central field of vision where it is hard to differentiate things of similar colors and intensity. Depth vision is affected. The deficits are slight but relentlessly become more troublesome over time. It takes longer to adjust to changes in light intensity. It’s worse in low light conditions, better in really bright light. I don’t understand why, but it is much worse in my dominant eye.

This condition is called “dry AMD,” and there is no treatment to reverse it or slow it down. There is another form, more serious, called “wet AMD.” Wet AMD can be treated, thank goodness.

What happens is either the tissue behind the retina swells and leaks or the blood vessels behind the retina bleed. In both cases, the fluid pushes the retina up, causing wrinkles. Some rods and cones are pushed together, and others are pulled apart. The retina does not completely relax back to its original shape when the fluid subsides. Objects in the field of vision are distorted as if somebody crumpled a photograph.

Wet MD can be treated but not reversed. A medication is injected into the eye, which dries out the leaking tissue and stops the growth of abnormal blood vessels. If you catch it early and the leak is small, the distortion might become less noticeable. For me, sadly, it didn’t, and I am stuck with it for life (unless it gets worse.)

Last week, I was reading the Sunday paper and thought it was printed with grey ink. When I looked at the paper with my “bad” eye, the ink was black. I realized that my whole field of vision was affected, not just my central vision. This isn’t supposed to happen with dry MD! I must have still another condition. This triggered a week-long melt down which all my ZOOM friends got to enjoy.

I have had a major melt down about my vision before, so I knew it wouldn’t last forever. The summer before the pandemic hit, I stopped driving because of dry MD. I lost so much independence! I would have adapted to COVID a lot better if I could have continued to drive. I am not very graceful about relying on others, whether they be friends, Paratransit, cab drivers, or Uber drivers. And I am not very proficient at using the apps that are supposed to bring Paratransit vans, cabs, and Uber or Lyft cars to me. It is not pleasant to be left standing on a street corner cursing.

I imagine that as the macular degeneration progresses, I will have to adapt to being more and more dependent on other people. I will gallantly conquer as much technology as possible. And once I learn it, there will be a software update, and I will have to learn it all over again. A lifetime of learning stretches in front of me. I am not thrilled.

So here I sit, right in the middle of the anger stage of grief. However, I am being sensible and proactive. I am beginning the information-gathering part of adapting to ever-worsening vision.

Here is what I have found so far:

1. There is more to life than ritual abuse!

2. Eschenbach Optik of America makes all sorts of magnifiers. I haven’t started going through their products to see if there is something I could use now and in the future. Looks a bit pricey, but they have used products for sale, too. https://www.eschenbach.com/

3. MD Support offers a forum and an email list for people with macular degeneration. I was a member about ten years ago when I was first diagnosed and panicky but dropped out. It was an active group with reliable information. I am rejoining.   http://www.mdsupport.org/

4. Living Well with Low Vision – Information and news, resources, free books, clinical trials.   https://lowvision.preventblindness.org/resources/ 

That’s as far as I have gotten.

~~~~~~~~~~~~

Tropical Birds at a Bird Feeder in Panama
This is a lovely, colorful video, but with no music or bird song. It cheered me up immensely. Rather than embedding the video, I am giving you the URL. It’s twelve minutes long, and I don’t want to tax WordPress’s memory. I hope you enjoy it. https://www.youtube.com/watch?v=0FB77T30feo

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Upcoming Holidays

January
1/31 New Moon

February
2/2 Candlemas/Imbolc/Satanic Revels
2/14 Valentine’s Day
2/12 (?) Lincoln’s Birthday
2/16 Full Moon
2/21 (?) Presidents’ Day/Washington’s birthday
2/25 Walpurgis Day

March
3/1 Shrove Tuesday/ Mardi Gras
3/1 St David’s Day (patron saint of Wales)
3/2 Ash Wednesday/beginning of Lent
3/1 St. Eichstadt’s Day
3/17 St. Patrick’s Day (patron saint of Ireland)
3/18 Full Moon
3/21 Spring Equinox

~~~~~~~~~~ 

You can find more information on the following holidays at:

Candlemas – https://ritualabuse.wordpress.com/2012/01/21/candlemas/
Valentine’s Day – https://ritualabuse.wordpress.com/2016/02/10/valentines-day/
Spring Equinox – https://ritualabuse.wordpress.com/2012/02/13/the-spring-equinox/
Easter: personal (for background, see Spring Equinox) – https://ritualabuse.wordpress.com/2014/04/21/easter-blues/
Walpurgisnacht/May Eve – https://ritualabuse.wordpress.com/2017/04/20/walpurgisnacht/
Beltane – https://ritualabuse.wordpress.com/2013/04/28/beltane/
Mothers’ Day – https://ritualabuse.wordpress.com/2016/04/26/mothers-day/
Fathers’ Day – https://ritualabuse.wordpress.com/2020/06/20/ritual-abuse-and-fathers-day/
Summer Solstice (corrected text) – https://ritualabuse.wordpress.com/2013/06/15/well-this-is-embarrassing/
Lammas – https://ritualabuse.wordpress.com/category/lamas/
and https://ritualabuse.wordpress.com/2012/07/23/august-ritual-dates/ 
Feast of the Beast/Bride of Satan: Part 1 – https://ritualabuse.wordpress.com/2013/08/31/the-feast-of-the-beast/
Feast of the Beast/Bride of Satan: Part 2 – https://ritualabuse.wordpress.com/2017/03/20/feast-of-the-beast-part-ii/
Fall Equinox – https://ritualabuse.wordpress.com/2012/09/16/the-fall-equinox/
Halloween (personal) – https://ritualabuse.wordpress.com/2016/10/11/halloween/ 
Halloween (background) – https://ritualabuse.wordpress.com/2011/10/02/samhainhalloween/
Thanksgiving – https://ritualabuse.wordpress.com/2016/11/20/thanksgiving/
Yule/Winter Solstice – https://ritualabuse.wordpress.com/2012/12/15/yulewinter-solstice/ 

30 thoughts on “I Am Desolate

  1. I love you Jean. Thank you so much for the SIA info. I’m so sorry to hear about your eyesight. I’m sending you lots of love and well wishes. XXXOOO Sparrow

    Like

    1. That love and those well wishes must have arrived, because things got a lot better – in my mind, not my eyes! If you go to one, let me know if it is easy to use a telephone for an SIA meeting.

      love and light coming your way….

      Like

  2. Dear Jean, the Quantum Technology called BIORESONANCE, existing since the 90’s, is very powerful and can definitely help you with your vision.
    Try and find practitioners around your place !
    My own device is the “Life System” and it has helped me to solve any health issue successfully, including eye-related…

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  3. Jean, I am so sorry about your eyesight. I cannot imagine this loss. You are in my thoughts and prayers. Thank you so much for these informative emails. Your subjects go right to the heart of what I deal with frequently. Thank you, JoEllen Smith

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    1. Well, it’s not actually lost yet – I am just anticipating and imagining it and getting the feelings and hopefully the learning out of the way before I actually have to!

      I’m glad you find the blog useful – real sorry that you have all this stuff to deal with, though

      Like

  4. Briana-

    Somehow your comment disappeared. I remember I was going to tell you that I used to have my computer room in the back of the house where I could see the garden. I had a bird feeder on the deck, and it was great fun. One day a morning dove walked into the house! They are so mellow. One day a raccoon came to visit – those critters are not nearly as mellow.

    Now I am in the front of the house and I forego a bird feeder out of concern for the parked cars and the pedestrians. I miss those little guys.

    Like

  5. Hi Jeanne! Hopefully you have many years before you lose your sight completely. But I would say if you can, practice using a screen reader now, or dictation on your phone, alexa will also help you a great deal.
    as someone who is totally blind, and has been all of my life, I will help you if I can! In any way I can! XX

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    1. Thank you, Carol anne! That is n nice of you. I know very few low-vision people, and you are the only totally blind person I can think of. Even the people in my support group still have some vision.

      You aren’t supposed to lose your sight completely with AMD, but you can end up with a very small ring of peripheral vision. Of course, other things can add on, like retinal tears, cataracts, etc.

      I plan to start practicing. First I have to learn how to turn things on! I think Alexa is for PC’s/Andriod. I have a Mac, iPhone, and iPad. The Mac dictation system is supposed to be very good. When I tried it, the result was incomprehensible!! I will have to figure out if it is the program or my voice.

      Do you have a Mac or PC? Do you have a Braille keyboard or do you use dictation?

      Liked by 1 person

          1. Are you Siri that’s what is on the Mac and the iPhone I also use VoiceOver which is the screen reader on the Mac and the iPhone it’s built-in already but you have to turn it on if you want to practice with it

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            1. We have the same software, then.

              I was practicing with VoiceOver and it got stuck on, even during ZOOM calls!!! Drove me nuts. Called Apple, the first guy got nowhere even tho he tried a lot of things I hadn’t thought of doing. He transferred me to the Assistive Department and it took that guy at least 90 minutes! I’ve been scared to try it again but obviously I will have to. I’m glad they have an Assistive Department.

              Liked by 1 person

            2. Sorry it got stuck do you mean it got stuck turned on and wouldn’t turn back off on the Mac I forget the hockey to turn on and off VoiceOver I think it’s at five I think it’s the option key plus F5 to get if you hit them together I think that’s it I will have a look and get back to you about it

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            3. It was more complicated than that. I had 2 voices going saying different things. I haven’t used it since!

              I would be more interested in hearing how you correct what you dictate – just in general, so I have some idea that it is possible.

              TechnoGrannie….NOT

              Liked by 1 person

            4. Well to correct what you dictate you have to be able to use the screen as in you have to be able to type using VoiceOver or the touchscreen on the iPad or iPhone that is the only way you can correct what you dictate

              Like

            5. Lol I have some information on how to use the Mac with VoiceOver if you want I could email it to you if you want to email me just go to my contact form on the blog and you can email me and I’ll email you back

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  6. thank you again for sharing your blog, its a privilege to read.

    i’m sorry to read you’re actively experiencing dry AMD; my birth mother is experiencing this same increasing loss of vision, diagnosis in her early 70’s. my empathy how frightening this must be especially for life long learners/avid readers/writers. my heart, prayers goes out to you.

    the tropical birds are beautiful. round these parts this time of year we get a glorious influx of bohemian waxwings feasting upon rowan/mountain ash berry trees. i’m lucky to have a small rowan in my front yard. towards the end of winter when the berries start to ferment, i find several drunk waxwings in the snow
    around the tree, sleeping it off.

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    1. I’m sorry to hear about your mother. Maybe she can benefit from the support group I found? Not that I can join – I need a verification code and it just doesn’t appear in my mailbox.

      Poor cold little birds! I wonder if they get hangovers.

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  7. I’m so sorry. That has to be so, so hard. My Aunt is losing at least more of her vision after what sounds like botched cataract surgery but….
    I don’t know how you feel about audiobooks, but there’s this thing called BookShare
    https://www.bookshare.org/cms/ for people with disabilities causing problems with reading print. (I found out about it from blind friends of mine). It’s really easy to sign up, a very simple form for any kind of Dr to sign, for non-students it’s $40 a month. I know they have more options then I’ve managed to figure out (they have a website and an app, I don’t know how to use the app yet) but they have a HUGE library of audiobooks including a lot of stuff that’s not available in that form otherwise (for example things like Alison Miller’s stuff or other trauma stuff)- they also have things/formats to help with other reading issues- I will ask my blind friends if they know anything about it’s use for your kind of vision impairment.
    Also, although I’m not particularly familiar with them, I know that some of the places like Lighthouse (it’s a place in the city for the blind) help people adjusting to lower vision stuff.

    Like

    1. I’m sorry to hear about your aunt. I hope she has some good support for this loss.

      Thanks for sharing BookShare! It sounds like a great resource. I’m going to put it on my list! At this point, audiobooks are low priority because I know how to use them and besides, they would take up time that I need to spend on arm-wrestling new technology. I so wish technology came easy to me! I have been told that I can always get a job finding bugs in software. However, I doubt if I would last long because I would be in tears the whole day.

      Like

  8. Oh Jean, I am so very sorry. I relate to your fear of losing your site, but mine is my hearing. Getting old is very scary. I too am having to be proactive and need a hearing aid. Since I am totally deaf in one ear, and I only have 60 percent in the other. We are supposed to have 100 percent in each ear. I am grateful that I can still hear at least with aid. Vision is so scary too. Prayers for you and even though it probably won’t help it can’t hurt to take those eye vitamins, vitamin A. love and prayers. Shana and the gang

    Like

    1. Hi Shana! I’ve taken the vitamins faithfully for 10 years. They are supposed to slow down the progression. God knows what it would be like if I hadn’t taken them! AREDS-2 formula, made by Preservision. I signed up for a free monthly newsletter which includes a $7.00 coupon.

      By the way, I am losing my hearing, too. It’s at that well-hearing-aids-would-help-but-you-aren’t-at-the-stage-when-you really-need-them-come back-in-a-year-or-two. Aging sucks for so many of us.

      Like

  9. So sorry. Feel free to grieve as long as you need without guilt. It is a profound loss. But! You are a survivor! You have survived worse than this and you will triumph over this as well. It is a sorrow but you are being proactive. You will be as prepared as you can possibly be. Ranting is a permissible coping mechanism. If your friends grow weary of listening, feel free to email me. I am a good listener.

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    1. They better not get tired of me ranting! But if they do, it’s so nice I can turn to you. Thank you for offering yourself.

      At this point, I’m not aiming for triumphing. Coping with grace would be more than I could hope for, coping would be fantastic, and I will settle happily for barely coping. LOL

      Like

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