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Archive for March, 2011

ME CFS

The New Yorker published this cartoon.

This is supposed to be funny?

My heart hurts.

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A new life

Now I’m trying to figure out how I want to live. Judging by my family history, the people I see around me every day, and the reading I’ve done about old age, I can expect to have another 10 active years. I’m in “young old age.” Ernie and most of the people who live here are in “old old age.”

People in their 50s and 60s tend to believe that they will not experience the realities of extreme old age. They think that their generation will not become infirm, afflicted with the ailments and debilities of old age as previous generations have, thanks to a healthy lifestyle, an easier life with more amenities, and medical advances. They are deluded. I know better. The ravages of age cannot be avoided or prevented. Some can be delayed, but that often means a longer and harder dying. I sure see that here. Although a few individuals do maintain fitness into their 80s and beyond, they are the rare exceptions.

My mother, my father’s mother, and my maternal great-grandmother lived to 90, in dementia their last years. I’ve got those genes. So I know what my life is likely to be after I pass 83, ten years from now.

I’ve been thinking about how I want to live since my recovery from ME/CFS in 2009. For the first year and more, I was too manic to sit still, much less focus on anything. Then came 2010, with Ernie’s repeated “seizures”, as they’re calling them now and his forced “transition” (as they call it here) to assisted living. Forced by my breakdown.

Since January 25th I’ve been consumed by taking care of Ernie in RGT and by being sick for more than five weeks. That’s over. I’ve done all I can do to make Ernie as comfortable as possible in an institution. After 30 days of observation, during which he received lots of unnecessary and unwanted “services”, he was assessed as qualified for the most basic level of service. This  means he’s mostly left alone. He can take care of himself. His bed is made. He’s helped minimally in the shower. He walks to the dining room for his meals. He’s now spending his time essentially as he was while living with me. I’ve gotten a lot of accommodations made for him. There’s nothing more I can do.

I’ve been going to RGT twice a day, spending an hour or so each time, and I’ve had lots of meetings with staff. As of today, that’s going to change. I will see Ernie when I go for my regular visits in the care center on Sundays, Wednesdays, and Fridays. On other days I will most likely see him for an hour before his dinner, but not always. We have cell phones and he can call me, as well as take my calls. So we will stay in touch.

I have my own car, my own apartment, my own piano, and more of my own time. What am I going to do? What will my life be like? How will I use the time remaining to me in the most satisfying way?

Well, I also have a brand new laptop.

The first thing I have to do is learn how to use it–Windows 7 and Microsoft Office 2010. Everything looks so different, even the function  keys; and it’s been many years since I used a touchpad. Grandson Matt successfully did what can’t be done. He networked my desktop and my laptop, which have different operating systems and different security services. I can access all my files and programs from each computer, and I can create a document in one computer and work on it at the other. The changes then appear in both.

I’ve done that. I’ll find out whether I can do it again! Must remember to make notes as I learn how to make this new computer and the network behave as I want them to.

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I have had the great good fortune of feeling love, concern, and interest from many people in other parts of the world whom I’ve not met in person. What a blessing the Internet can be.

In the depths of my troubled time this year, in the first week of February when I was very sick and we had just moved Ernie into RGT the week before, I received a small padded envelope in the mail, addressed thus:

On the back was this greeting:

Inside was a small envelope:

which contained this beautiful textile card.

The card read:

And with the card was this magnificent textile brooch:

It is 3 X 2 inches. Dyed, scrunched, painted, and gilded (gilted?) silk has been applied on to a copper-painted fabric the texture of fine linen. Teeny tiny stitches and a copper elephant charm have been added. Nothing could be more to my taste! Remember my black jacket with the coppery embellishment?

This brooch came pinned to the front of a black card. Here I’m showing it pinned to the back of the card:

Jill, a gifted textile artist, sent me this beautiful, extraordinary, and heartwarming gift. Further, she has kept encouraging, hand-holding messages coming throughout this tough time.

Jill, I can’t thank you enough for the brooch and for your support. All you lovers of textile art, needleart, mixed media art–do go see more of Jill’s work.

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I own a piano!

You may already know from Facebook that I now own this piano. You may also know that during my manic phase of recovery in 2009, I impulsively jumped up to substitute for the pianist who was absent from a church service where I take June in the care center every Sunday. Afterwards I decided that if I was going to play the piano, I would have to be able to play it well. I would have to practice. I hadn’t played a piano in over 20 years.

After I’d used an electronic keyboard in my room for a couple of months, I auditioned several pianos here at Charlestown and felt most comfortable practicing on the one in the Music Room–about seven minutes away. I’ve been practicing every morning, starting at 5:30 for the past year; and I’ve been telling Ernie that when he was gone, I would put a piano where his bed was. Of course, I never imagined he and his bed would be gone to assisted living.

Last Thursday, after Dr. C told me I wasn’t sick, I went to look at some used pianos. I’d done some research online and based on that, I gave myself a budget of $2000 for an upright piano. There’s a used piano business right up the road in small-town Catonsville, next door to our Indian restaurant and right across the street from the elementary school.

Looking further up main street.

Catonsville’s main street is a couple of miles of small shops and other businesses, lots of restaurants, professional services, banks, gas stations, churches, the library, and schools, but there’s no longer a grocery store.

I entered Piano Man’s showroom and found the owner and his assistant seated in a small office area at the back.

Walking toward him, I saw that all the price tags were beyond my budget. I told him that I wanted an upright piano and that I could spend only $2000. After very little conversation, he got me to try out a piano. Then he suggested that I try another one, and another. I played three or four pianos, the same scales, exercises, and Bach chorales on each; and I found one I really liked. It was priced at $2970.

“I understand that what you’re telling me is that I will have to settle for a spinet,” I said.

The owner replied, “Do you really like this piano? I am going to offer you a special senior discount. You can have this piano, delivered, and tuned for $2200.”

“That’s a great offer,” I told him, “but I’m not going to buy the first piano I like.”

He suggested a used piano dealer nearby where I could try out some pianos. Online I found another used piano business not far away. On Saturday I set out to try some more pianos. First I went to Jason’s Piano Warehouse Outlet. Unlike Piano Man’s attractive showroom, this was a concrete-block warehouse/factory. It raised my expectations of finding an affordable piano. I told the salesman what I was looking for. He proceeded to tell me the wonders of his digital piano and as I stood, he demonstrated some of the fancy stuff he could do with it. And told me about commercials he had produced on the one at his home office.

He asked if I wanted to sit. I declined, sure that that would encourage him to keep on talking. He hadn’t shown me a piano yet.

For the next twenty minutes or so, I stood and listened to the history of the business, how they provide pianos for school systems, what’s wrong with pianos made in China, how he fixed a church’s sound system, the difference between spinets, consoles, and uprights, and to him playing little bits on several pianos. Finally, he prompted me to sit at a piano and try it. I didn’t like it. I tried another one and didn’t like it either. None of them had price tags on them. Finally, he took me to the back of the warehouse and had me try a piano there.

Here’s my poor phone shot of that piano.

I liked it a lot. I loved the touch, the sound, and the classic black case. It happened to be new and it cost over $3200.  Even though it was tempting, I was pretty sure that I was not going to exceed my budget by that much.

Further, I felt manipulated. He tried to seduce me into paying more than I could afford because I liked this piano so much more than the others he’d shown me. Then he told me all of them were priced around $3000, too.

From there I went to Warfield’s, the dealer who had been recommended to me. There I entered a Dickensian venue that occupied the lower floor and part of an upper floor in an old brick building that also housed a tax accountant and a computer repair service.

Again I stood and listened to the owner talk about how he had taught himself to play first the guitar and then the piano, his strange visual disability, his understanding of music, how long it took him to learn all the Bach chorales because he couldn’t read music, and how he had broken his thumb. His shop was unbelievably cluttered and dirty. In it was a jumble of pianos in various states of rebuilding, tools and materials, junk, and a tiny office.

He didn’t ask me anything. I told him I wanted an upright piano. He showed me a piano that looked like a spinet to me, but I tried it. “It’s only $1500,” he volunteered, after I had quickly stopped playing it. Then he gestured toward another piano. “That one’s $5000. Any use in trying it?” I guess that’s how he was figuring out my price range.

We went up dirty concrete stairs with drab walls, to his upper level where there were half a dozen or so upright pianos, each covered with a unique dust cover that had been either a bedspread or a table cloth or had had some other life more mysterious. I tried two of them. I didn’t like either of them, and I couldn’t wait to get out of there. But I had to wait while he carefully recovered several pianos, talking all the while, before I could escape.

On my way out, he said, “How much do you want to spend?” When I told him, he said all of his cost more than that.

By then I was sure that Piano Man had offered me a great deal on a piano I liked. I drove back to Catonsville and went into the showroom. “Do you still have the piano I liked?”

He had had it moved right in front of his desk. I played it again. Then we talked for a while. There was no one else in the place. I was calling him “Nick” and he was calling me “JoWynn.” I told him about Ernie and the vacant room where the piano was going. He asked me lots of questions about myself, as he wrote up the invoice, showing the $770 he had taken off the price. And he told me he would deliver it between 4:00 and 5:00. “Today?”

“I told you we had a Charlestown delivery this week.” He had mentioned that on Thursday when I told him where I lived. “We’re delivering today, and we’ll deliver yours.”

It was closer to 6:00 when the piano movers arrived, but it’s here and it’s mine.

Today I went back to take pictures. Here’s Nick in his showroom.

And close up.

I feel that Nick wanted to make it possible for me to have a good piano that I liked.

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