AMD 101 Lecture

I got to go to Walmart today. Not a big thing but not happening as much as it used to. My husband cannot see to drive in the dark and since it is dark by 4:30 now, he cannot take me after I get home from work. Usually it is a lot easier just to give him a list and he can go during the day. Acceptance and adaptation do tend to be watchwords for the visually impaired life. Having my proverbial wings clipped also cuts down on the frivolous purchases!

Speaking of transportation – one of the eternal thorns in my side – I wanted to once again push self-advocacy. With my ride home from school facing a lot of possible medical nonsense, I asked once more about the transportation people actually getting me home from school. Their previous hours were such I would have had to miss an hour of work daily to ride home with them. It now appears things have been amended and they can actually take me home two hours past the old time. Yahoo! Remember nobody ever tells you when these things change.

You have to ask and keep asking. You also have to make sure they know there is a need. Demand can affect supply. Basic fundamentals of economic thanks to Smith and Marshall.

And economics gets me back to Walmart where they are playing the devil out of Christmas music and hawking everything you never really needed. It is the holidays!

We got together with some extended family for Thanksgiving. I usually arrange things so I can talk to my nephews on these occasions. However, this time I got ambushed. Okay, I actually think the ‘kids’ were the real target but I got caught in the crossfire.

This person inquired about my ‘condition’ and then launched right into the “you don’t look/act blind” routine. I know other people get this because there are a couple of dozen posts about it online. Annoying people with their annoying questions.

Not sure exactly how to handle this situation. I don’t have prosthetic eyeballs and even if I did, throwing my eye on the table in a chain restaurant would probably get me thrown out (although in some incidences that ploy has worked for people). Also, as much as this person and I have a ‘history’ and I could have blasted her, my husband would not have approved. That leaves out the caustic zinger. He has to deal with his family more than I do.

Another thing that aggravated me was she was asking the most basic of questions. Everyone else at the table knew the answers. If she had been interested before, she would have known the answers. Although she thinks it has been a year since I started to lose my sight, it has been nearly two and a half years since my first eye ‘went’. I think that is plenty of time.

But barring the bad relationship, how much do I want to subject my nephews to the AMD 101 lecture? They have heard it. They ask sparse but pertinent questions and the conversation moves on. I have tried to integrate AMD into my life. Not the other way around. I have lots of dimensions.  I have other things to talk about.

Just asking. Anyone?

written November 27th, 2017 Continue reading “AMD 101 Lecture”

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Make the Safe Call

Hey. I had a real chock full day planned today and what do I do? Nothing. Pretty much nothing. Bummer.

A friend and I went for a Japanese hibachi meal last evening. About three hours later, my system revolted. I will spare you the details, but it really was a waste of what had seemed like a nice meal. After I was finished ridding myself of dinner, I slept poorly. (Wasn’t food poisoning. I KNOW how that acts. Just got a hold of something my system refused to digest).

Now, my plans for the day had me in town, navigating from one activity to another from morning to mid-afternoon. I would have been on my own. My husband was motorcycle riding with a friend.

Had it been two years ago, I would have tried it. I could have taken myself home when I needed to. Cut the day short. Now I don’t have a car. Now contingency plans like that don’t exist for me.

I thought about it. What would happen if I got sick again? Huddled in a corner somewhere until someone had pity on me? Spend 20 minutes praying I did not vomit in their car? Nothing like that seemed like a good option. They were not good options at all.

So I allowed discretion to be the better part of valor. I turned off the he alarm and went back to bed. Spent the day hanging out at home.

I like to think something like this won’t happen again but I know it will. Without the ‘escape hatch’ having your own transportation can afford, many of the marginal calls that I would have said “go for it!” before will now have to be “no”. That really is limiting. It is depressing. I do not like it at all.

So, the game plan? Keep myself as healthy as possible. Be grateful for everything I am able to get to, everything I am able to do. Beyond that I guess it just comes down to acceptance. I cannot cut it as close as I used to. I cannot make the marginal call any more. Sometimes I need to use a little discretion. Make the safe call. Damn.

written October 15th, 2017 Continue reading “Make the Safe Call”

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Practice What I Preach

At present I am waiting for the van….again. These pages seem to turn into one big tirade about the truly crap public transportation we have in this rural region.

I got up to get a 6:54 am van to work (having told them I need to be there at 8:30) and I just got the call it would be another 45 minutes until they arrive. Really?!?!? This is on top of being told they could not bring me home Saturday because my seminar is in another zip code, 5 miles away.

I am angry. I am frustrated and I am resentful. Resentment is defined as bitter indignation. It implies unfair treatment.

From the complaints I have heard from the other people who ride the vans, I suspect I am not being discriminated against. Everyone is getting the same lousy treatment. Just the same, it is not fair!!!!!

Yes, I know fairness is an illusion. I know resentment is, as published in Psychology Today way back in 1995, futile and destructive. I am aware my resentment is most likely disproportionate to the damage that has been done.  I am still pissed!

Psychology Today goes on to talk about how resentment is based on internal need rather than external circumstances. If I did not believe I DESERVED better treatment, would I be as resentful? I would say not. I am arrogant enough to believe good things should come to me almost all of the time. Having those ‘shoulds’ in my head sets me up to see things as unfair.

Resentment gives us a target for our frustrations. “This damn transportation company is to blame for my life not being easy! I could do so much more if I only had decent support!” Resentment allows us to forget that while things are caused, sometimes we are not staring at the cause face to face. Things could have been set in motion a long time ago. Your ‘injustice’ may be just another domino ,’victim’ not the agent that set things in motion. Easier to assign blame to what you can see.

So, recognizing that venting my spleen (who said THAT, anyway? Shakespeare?) at the van people may not be productive, I went online and found a couple of articles. PsychCentral.com pushed the empathy angle. Remember “walk a mile in his shoes”? It helps to look at the other party’s viewpoint, their situation. Are they doing the best they can under the circumstances? Psychology Today suggested something’s that sound, well, rather DBT-ish. They suggest you observe your resentment and sit with it for a while. They also suggest relaxation and self-care.

DBT as one-step shopping?

If I actually try to practice what I teach, I would have to admit rehashing all of the nonsense with my transportation situation is not being mindful in the present. The only thing I can deal with is the now. I should also practice some gratitude. Do I have a lot of freedom because the system exists? Yep. May not be exactly the way I want it to work, but it works…sort of.

So, in consideration, perhaps I should be a bit more tolerant. Deep breath…I feel better now. Thanks for listening!

written 9/22/2017

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Take the Bus

Back home from Lion Country! Nittany Lions, that is. We are Penn State! and all that. I rate the overall trip as a success. I made a few contacts and got some ideas.

The more I heard about what the kids were doing the more I thought we need a similar program for adults. How to use an ATM, do laundry, cook, use a long cane, technology…!

Just found an article on ATM use. Will write that up soon.

This morning I got the courtesy shuttle to the bus station. The bus trip was uneventful. Do I like riding the bus? No, but one of these days it may be necessary and I should have the experience.

The woman I was speaking with at the Summer Academy  (Virgil’s Mom! Did I mention I fell in love with Virgil?) said she has had mixed experiences with bus riding. The driver was nice but she was treated shabbily in the station at her destination. She may not even have light perception so her challenges are greater than the average person with AMD, whoever that might be.

Just the same, sometimes people can be royal pains. Make sure you have a few numbers to call in a crisis.

I did not ride with Greyhound but VisionAware did a piece on traveling on Greyhound (and other providers) a bit ago. They provided a number: 1-800-752-4841. This is the hotline for Greyhound. They like you to call 48 hours in advance of your trip.  If you have special needs, they prefer to know in advance. Reasonable, I think. I don’t like last minute complications either.

Remember you also need to be reasonable in your requests. Things like help finding a seat or the bathroom are within the realm of acceptable. If you are not getting even that modicum of consideration, I would expect that number also takes complaints.

Would I take a bus again? Yes, if it were my only option.  I would have to chose carefully to avoid the ‘milk run’ and hitting every village and crossroads along the way. I am just not that patient. This combination of public transportation and ‘Hubby Trailways’ transportation system worked out well.

The times I have been in England we were either driving (God bless us!), in a tour bus or on the trains. However, Britain does have a bus system. In British city transportation systems, stops are announced over the public address system, after which my first reaction was always to turn to a native and say “Excuse me. What did he say?”  Inelegant, but it got the job done.

Britain is not only supposed to be in the process of introducing free bus passes to those over 60 and those with disabilities (most of us on both points I would suspect) but they are also introducing a talking sign system. This is among several, other changes meant to make public transportation more accessible in Britain. See Jonathan Webb’s Bus Travel and the Blind or Visually Impaired for more info.

And FYI for you dog lovers, the Beastie Baby is now two days post when the vet expected her to live. Knock wood, cross fingers, cross toes, cross eyes. She still has not gotten the memo about her impending demise and we are not telling her!

Enjoy your evening!

written July 29th, 2017

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Some Learning to Do

Good morning. Mildly frustrated….again. Suspecting this is the usual state for people with vision loss in the ‘mature’ years (and whom, exactly do we think we are kidding with that ‘mature’ business??)

The online dictionary gives the definition of frustration as “the state of being upset or annoyed especially because of the inability to change or achievement something”. Yep, that’s me. Upset and annoyed.

I miss my freedom and flexibility of movement. I want to be able to go where I want to go and do what I want to do when I want to do it. And I don’t want everything I do to be such a damn project!

I got back to hip hop this week after three weeks of missed classes. Variety of reasons. But then Tuesday I ended up staying home because I had gotten the feeling I had overstayed my welcome with that ride. (Take the hint, girl!) Wednesday I was going to ride my bike to yoga in the park but I got out of work too late. Tonight I tried a different class, one the Y is offering in place of yoga, and really did not like it. Honestly! Niggling little frustration after niggling little frustration!

Then, of course, I feel guilty. I had arranged for transportation, but two people inquired how I was getting home. Either of them would have volunteered to bring me home. That is not a requirement. They are kind. How can I be so frustrated when I am surrounded by kind people? What is wrong that I cannot appreciate what I have?

Summer plans are starting to formulate. I am one of the most fortunate people I know because I have people willing to take me to yoga events, blues festivals and even into ‘The City’. [New York City, that is.] Am I thinking of that? Of course not! I am thinking about how I am going to finagle transportation! How can I get to the kind souls so they are not driving so much? How can I be less of a burden?

When I start thinking this way I start to get very willful. I dig my heels in and say things to my husband like “Fine! I don’t care! I will walk!” Yeah. 20 miles in the snow uphill…both ways. Problem is: I would actually try!

In DBT the question to ask someone who is being willful is “What is the threat?” What is it you are defending against when you dig your heels in and insist things be your way? Pretty good question because dollars to donuts I am defending against something!

In my case, I think I am defending against the loss of my lifestyle. The loss of my identity. Realistic fear? Certainly not for a couple of confused weeks. Best to let the dust settle. See how things shake out to use one more of my colloquialisms.

Of course, my style tends more towards blunt force than patience. I don’t totally embrace everything I teach. Apparently I also have some learning to do.

Written June 10th, 2017

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How Many Favors?

One of the problems with being a cockeyed optimist and a Pollyanna is I always expect good things and relatively easy sailing. When that doesn’t happen, frankly, I become perturbed. I HATE to be thwarted.

Last evening I started downloading Golden Prey (book by John Sandford) from BARD. It has stopped several times since then.

I think it has to do with too much in my iPad memory. My ability to clutter up my environment extends to technology and cyberspace!

Another case of “do as I say, not as I do”. Deleting books you have already listened to is fine. You can always get them again. FYI for you non-technical savvy folks, your devices will run faster if you do.

My schedule is changing for the summer and I have to figure that out. Transportation will only pick up until 7 pm. After that my coach turns into a pumpkin! (Of course, for some of the ‘lemons’ I have ridden in, that would be an improvement!)

I have been picking up signs a woman who has dutifully transported me up for the last 15 months has gotten tired of it and needs a break. Changing my schedule so that I can ride my bike at least some of the time and take up some of the rest of the slack with transportation should work. I also have a co-worker who has started to take some of the same classes and who has offered to haul me. Also another gym friend.

People truly are wonderful and generous but they are not saints. Problem becomes they hate to let you down and will keep on helping even when it is no longer convenient.

I am starting to think I need some sort of rotation system. I already try to limit how many times I impose in one week. I try to keep it under three rides – counting someplace and back as two – a week for any one person. Except my husband, of course. He drew the short straw when he married me!?

Once again there needs to be some sort of etiquette book for this! Any ideas about the ride dilemma? How many favors for the old, visually impaired chick is too many?

Still haven’t got the new pool liner. Got that call at 7 am as the rain poured down.

And my frustration that you may actually care about….Aipoly, or at least the free version I downloaded, did not live up to its hype! My diet Pepsi bottle was “a wine bottle” (however, that is a thought!) and my glare glasses were “one string of headphones”. I got too close to my sandal when I took the photo so that was “a basket” although when I pulled back and tried again, Aipoly got it right.

Now, in all fairness, I am cheap. The word free can be music to my ears. There is an Aipoly version for slightly less than $5 per month. That one is supposed to be much ‘smarter’. Since I am cheap and not in need of such a service yet, and since I can never remember to cancel those damn ‘free’ trials, I’m not downloading it. If you are in need of such a service and can remember to cancel a free trial, try it and get back to us please.

Type at ya later! Continue reading “How Many Favors?”

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The Stuff of Life

Good morning. Fair warning; I might just ramble on this page. A bunch of little things happening. Nothing major.

Of course, little irritations are the stuff of life. I am also thinking they are more the stuff of low vision life.

I am waiting for transportation but I have no idea when they are coming. I got a call but the recording never clicked on. That meant anywhere from one minute to a half an hour. Better than yesterday. Yesterday they never bothered to put me on the schedule!

Fortunately my husband was able to take me. I seem to have a large number of ‘saviors’. Did I tell you a total stranger gave me a ride home from yoga? I was sort of stuck. The stranger told me she has been taking class behind me for six months. Couldn’t prove it by me.

That is a bit embarrassing. The next class also gave me a problem. I really wanted to talk to her but I could not see if she were there or not. What was I supposed to do? Walk down the back row staring at people? That would have been a bit weird.

I finally decided she had been told (and had observed!) that I am visually impaired. If she wanted to talk to me, she needed to speak to me first.

Why doesn’t someone write an etiquette book for these things? Miss Manners for the Proper Low Vision Sufferer!?!? There have to be some sort of rules! I get frustrated having to reinvent the wheel all of the time.

I got my CCTV back from the repair shop. I held on to the loaner a few days just to be sure all was well with mine. Also because returning the loaner was a semi-major event. Pack it up with all sorts of cushioning. That, of course, made it all a little too much for the box so one of us had to hold it closed while the other one taped. Then I discovered they had neglected to include free shipping labels so I needed to call for them. No to mention getting the bulky box out the door and to UPS!

(UPS will pick up. You can schedule a pick up by calling 800-pick ups which is 800-742-5877. However, their website does mention a ‘residential surcharge’. How much, no clue. We are the strong back and weak mind type and just always take things to the store.)

It would be nice if there were local repair options but I don’t believe there are. FYI, though, when I was not sure the company was going to be able to supply me with a loaner, I called Blindness and Visual Services. As a former client I could have borrowed one from them, quality not guaranteed. Pack that one away in your memory for a rainy day with a ‘sick’ CCTV.

Last thing for this post, I have my first visually impaired counseling client! I won’t say much about that person because of confidentiality. Instead, just a quick comment about my (of course!?) thoughts on it. To wit: it is happening slowly but it is happening. Remember that stuff about God closing a door and opening a window? The stuff about not forcing your fate???? How about “build it and they will come”? There you go! We are building and they are coming. Cool. Continue reading “The Stuff of Life”

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