"MD (Macular Degeneration) Support"

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.

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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

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You can find more information on the following holidays at:

Upcoming Holidays

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