This is a LONG article, but needs to be all inclusive. I could really go on and on, but will report as much as I can with what I need to say. So, I’ve decided to make two parts to it.

As I was working at my computer, this morning, doing some way-past-due computing, I realized that my macular degeneration was playing tricks on me and my work. Letters kept moving around, making me think that I’d misspelled a word, using an entirely different word than I had intended, taking a letter from a word that I knew I had keyed into the sentence and putting it into the line above, making me think that I had not used a plural because the “s” wasn’t there, although it really was. That’s MAC for you. Always doing everything it can to make life more difficult.

Several years ago, when I was first diagnosed with macular degeneration (and from here on I’m going to use MAC or AMD), I remembered a good friend with whom I worked at Ghost Ranch when I volunteered there. Ruth always wore a baseball cap – always. I never asked her why – I probably thought that would be rude, but, today, I know she would have answered with the fact that she had MAC. We never talked about it, but I knew that she was no longer driving from her home in Colorado to take classes at the Ranch.

When Larry and I traveled to her home some years later, we did talk about MAC, and how it affected her life. She said the most difficult thing for her was getting to her doc’s office for the injections that were necessary – at that time, she had wet AMD. Her son or daughter were kind enough to drive her from her country home into the nearby city for treatment.

When I was first diagnosed with MAC, I asked my opthamologist, Mimi Liu, this question: Is this going to cause  me to be blind? She assured me that I would not. I would have difficulty with seeing some things, but blind? No. I, periodically, kept asking her the same question; each time the answer was the same. With her retirement, I now have a new doc and asked him the same question. You see, I think I can live with out hearing (and, do now have hearing aides), but, without sight – maybe, not. Again, the answer was, NO.

Artist Georgia O’Keeffe had AMD beginning in the 1960s. She knew something was wrong when driving from her home in Abiquiu, NM, to Ghost Ranch (just a few miles from her home and a place that she loved); it was as though she was driving through a cloud. And, yes, it does sometimes feel like that. For me, though, not so much.

My difficulties are related to print. I need significant contrast, strong black on white is the best. Not the reverse which is sometimes how things are written – white on black. The worst printing is red or green on any color paper – even white.

Red and green are consistently difficult for me to see on paper, up close. However, the red, yellow, and green of the stop light is not difficult. Most of my difficulty is with print – near-point vision.

My under the counter electric oven has both red letters (to set the temperature) and white letters for time and timer settings. I cannot see the red temperature letters. So, how do I set a temperature for my oven? I know that the beginning temp that comes up is always 350°; so, starting with 350, I press the temp button on the controls and count by fives until I get to the desired temperature. It can be frustrating when part of the way to 425° for pizza, I lose count and have to start over. The pocket flashlight that I carry (a gift from computer guru, Roger) does nothing to help me with the oven controls. It DOES, however, allow me to see prices on grocery store shelves, read labels that are horrible on OTC meds, or try to find something I’ve dropped on a dark floor. I have these flashlights at my desk, in my kitchen, as well as in the bedroom. I think, if one is good, three must be better! So, thanks, Roger.

Memory is so important to those of us with MAC. We have to remember where we put things and where things belong. And, woe be unto us, if something has been left in the wrong place. Cooking utensils, table cutlery, dishes – all must be returned to the place where I remember that they should be. If they are not, it is likely that I will have to choose something else to make for a meal.

My office desk area can be another real problem. Think of all the tools that we use at a desk. The computer, of course. Do you have a laptop, as well as a desk computer. Where is your lap top? Scissors, rulers, pens, pencils. Paperclips; there are several sizes of these – are they kept in the same place?

Using either of my computers, font is not a problem. So many of the things I want to read on the computer are in size 11 font. And, very light (no bolding); that makes it difficult for me to read on my screen. Yes, I can increase the font size, but cannot bold the letters. If I want to save the article for later reading, I copy it into Word. There, I can simply raise the font of what I am trying to read to 16 and make the letters bold for contrast. Time was when I could use 14, but really not any more.  

I also have another twist for many of the articles I copy into Word. The transferred article exists on a page that fits the 11 x 8 1/2 inch paper.  Trying to read the entire line of print is difficult for me. So, I convert the article into two columns- making it more like the shorter lines of a book or about 3 to 3 1/2 inches depending on how I’ve set the margins..

My “keeper” Rita has been helping me with the moving of my home office from one room to another. Chaos has reigned! We put things into boxes and boxes to get it out of the “old” office space and into the “new” space. This started in early October; I’ve have spent a month wondering where we put the envelopes, the right kind of paper, the toner for the printers and the copier. CHAOS! Yesterday, we spent our time organizing those boxed-up items, taking stuff out of the boxes, putting the empties in another room, and making it safe for me to walk to the wood stove that I have used twice this week.

I now know exactly where the toners are for each machine, the different papers are (either with or without three-hole punches), the cardstock – I could go on. Looking at the work, I wonder – how did I get that much toner and paper? There is still a lot to do but, at least, I now know where these items are located. My memory will keep me informed.

I no longer am able to read books. The print is too small and too light with no real contrast. I do have some magnifying help for this. Machines like the Eschenbach magnifying camera (really great visual aide), and several other tools that will magnify the print. And, they are wonderful. However, I really prefer holding a book in my hands and reading the words with no assistance. Daughter #3 orders books for me on my Kindle / Fire tablet. With it, I can increase the font so it can be read like a book. In addition, if I am fortunate enough to travel on a long-distance trip with Daughter #1, the Kindle / Fire lets me take lots of books with me. In addition, in the car, we can listen to recorded books.

There are, of course, books that I want to read and use that have no Kindle / Fire editions. With those books (that are paperback) and the poetry journals that I also receive (also paperback), I take them apart, separating the innards from the covers. I’ve learned what works in tearing them apart and what does not – that took a few missteps. I, then, three-hole punch the pages to fit into a small, three-ring binder that, again, has been ordered for me by Daughter #3. They are the perfect size notebook for these separated pages. To read those books, I can take one page at a time from the notebooks, place it under the Eschenbach camera, enlarge the pages, and read it. It is quite difficult to read the pages of an intact paperback with the Eschenbach. The pages really need to lie flat for the process.

We’ll finish this, next week.

Be Safe and Be well

The Cranky Crone
Thoughtful comments are very welcome!