Archive for May, 2009

Today Charlestown held its second annual mini-triathlon. Teams of three compete—one swims, one walks on a treadmill, and the third uses the Nu-Step, instead of biking. It requires arms and legs working. The teams must include residents and staff; each team has resident and staff members. I swam.

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I wasn’t the fastest swimmer, but I wasn’t the slowest, either. I’m a good swimmer, but a distance, not a speed swimmer. I can swim for an hour, but I don’t go very far in 2.4 minutes, which was my time today.

Swimming came first, followed by the other events which took place in the Health Club.

A resident being coached in the walking competition.


The Health Club director inspiring the cheering section:


By the way, the man in the wheel chair was a “biker.” He had to be helped from his wheel chair and helped getting his arms and legs into position, but then he took off! It was amazing to see.

Not great pictures, but I wanted you to see the Nu-Step being used for the “biking” competition. And a trainer/timer observing one of the walkers. Notice the advert on the t-shirt here and above for Erickson’s cable TV channel: Retirement Living TV.

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A staff competitor, Precious:


And two more staff competitors, Linda and Ara.


And here’s my team:

My team

Corporate marketing staffer Debbie who walked, legally blind Mary who “biked”, and me.

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My mother loved to smock. One year she made and smocked matching dresses for me, my sisters, and herself. They were pale pink cotton with dark pink smocking. This is a terrible picture, from about 1950. (Maybe I’ll eventually be able to repair it with Photoshop Elements—ever the optimist.)


Seated on the floor, from left to right, are my sister Marge, me, little sister Katrin, and brother Don. Directly behind Don is our mother. To her left are my grandmother and my great-grandmother. My father is wearing the bow-tie.

They were pretty dresses, and I remember that I liked wearing mine.

Now I want to show you some really beautiful recent smocking. Remember June-to-the-rescue, my neighbor who showed me how to thread my new Simple sewing machine? She also loves to smock. Take a look at this bridal garter.


Or see it enlarged at Flicker:

Isn’t that a great idea? Here’s how June makes them.

First, she machine-pleats a strip of cotton batiste. Then she adds lace edging.


Next comes the smocking, the addition of the elastic, and the finishing. On the left garter, you can see traces of red guideline stitches which will be removed.


June is making seven of these garters for her granddaughters, and possibly she’ll make an eighth for a future granddaughter-in-law.

For her eldest granddaughter, June made a diaper bag for her first great-grandchild, who is now age six. Here are some smocked motifs on the diaper bag. Can you imagine actually using a diaper bag with such fabulous work on it?


That’s not all. Here are some of the clothes June has smocked for her granddaughters.

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Plus this baby dress and bonnet, modeled by the baby, over her pajamas.

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And then there’s this pillow cover:


Detail of the pillow:


Such a pleasure to see. Although I am not interested in doing smocking, I do enjoy seeing such lovely work. Don’t you?

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When I began this blog, I announced that it was going to be about my life in stitches. Well, I haven’t blogged much about stitching recently because I haven’t been stitching. Only occasionally, for short periods. Nor have I been studying physics. Since February I have been working on recovering from CFS, and that has taken most of my time and energy. And now that I have recovered, I don’t want to stitch or to study—the greatest sources of joy in my solitude.

In fact, I am discombobulated (sorry non-native English speakers), so disoriented, by my recovery, that I don’t know what I want or who I am. I am certainly no longer the woman living in silence and solitude, a contemplative. Expecting this transition period to pass, I’m waiting to find out who I turn out to be—at 72!

Yesterday, with my new energy, I renovated the large bulletin board behind my desk. On it were art reproductions I had printed from the Internet and bits of stuff I wanted to be able to find. When Ernie put it up, around 1999, it was intended to be a design board, and it has functioned as one from time to time; but getting to it was too troublesome, especially after I put two big flat monitors and a printer-scanner combo on my desk. And so the Cezanne, Matisse, Toulouse-Lautrec, and Cassatt favorites just stayed there—for about three years, I think.

After I took everything off the cork board, I covered it with white sheeting, and then I put up some of the stitched studies I’ve done over the years since I became serious about making needleart. Today, I finished the job by taking all the stuff off my smaller bulletin board, to the right of my desk, and replacing it with the rest of my stitched studies.

Here’s the renovated big bulletin board. I had to shoot it from above because those big flat screens hide the lower part of it.

Big bulletin board

Here’s the upper left:

Upper left

The lower left:

Lower left

The upper right:

Upper right

And the lower right:

Lower right 2

All these pieces have been residing in plastic sleeves in binders. They were done for courses or for the online challenge, TAST; or just as an experiment, to see what I could do. None are finished. None was ever intended for display. They are simply studies done to learn various techniques and to develop skills. That tiny blue study, under the trees, is Ernie’s feet, in needle painting—with a single strand of DMC cotton floss in split stitch. Imagine that!

Here’s the other bulletin board:

Smaller bulletin board

I wish you could see the textures, because that’s mainly what these studies are about. The large one was one of my first improvisations. It was done around 1996-97. The patches were cut from Ernie’s discarded knit polo shirts and stitched on a heavy, slightly ribbed cotton. I’ll never do that again. No fun to stitch through! In those days, however, I was simply using whatever materials I had on hand or got on sale at Wal-Mart. That was before my Social Security Disability Insurance claim was approved. Below the large study are pieces done in 2007.

The work I did for display was all done for specific gifts, so I don’t have any of it except my crazy patchwork pillow. And Ernie has some in his room.

Back to the beginning—this is my life in stitches. It’s what I did while I was sick and disabled.

I do enjoy seeing it.

The Elizabethan panel awaits. More about that anon.

What next? I don’t know. Oh, I just remembered. I have another bulletin board–the portable design board hanging behind my door. So….

(I have put pictures on Flickr, in case you want to get a closer look. There you can enlarge them.)

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In March I posted about my paper doll project—Flat Stanley. Yesterday I mailed to Aly the story I’d made for her. I can’t tell you how many hours I’ve spent trying to do this project in Photoshop Elements. Without success. What I did do follows.









The restaurant visit was Nina’s idea. She left a comment about making a paper doll of her niece and taking her to a Chinese restaurant. Thanks, Nina.


Some of you will recognize pictures you’ve sent me on the next pages.




I put the pages in a binder.



Well, that was the end of the Flat Stanley project, but you’ve seen Aly’s little sister, Lilly. How could I not make a Flat Lilly? And here she is, with three outfits, ready to be mailed to Lilly.

Flat Lilly

Now, as soon as I write a letter to go with Flat Lilly, I think it will be The End.

Of this project. I’m so glad to get this off my desk and off my mind.

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Sophomore oratory winner


Grandson Josh, he who would stitch with me, won the sophomore oratory competition at McDonogh School on Friday. I was there, for Headmaster’s Day.


Josh spoke on behalf of gay rights. I hope to see a video of his speech. If not, I’ll ask him to give it for me to video.

His girlfriend, Kate, also won an award for her leadership in vocal music. You may remember, she intends to teach music.


And yes, I was there.


And so was daughter-in-law and proud mom, Carolyn

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with whom I had a delightful lunch and talk, talk, talk after the ceremony.

Please bear with me. I’m still floundering my way into a new life, but I will get back to stitching and posting about THAT. Only now, there are so many other things I can do. Yipes!!!

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Back to normal


While I am definitely not “back to normal,” (what’s that?), I am back to my normal size.

Over the past eight years, thanks to CFS, I gained 60 pounds. I’d never been overweight before, and it grieved me no end. Now, at last, I’m back to the size I was before CFS. But, oh, how my body has changed since I was 55. Here I am standing as straight as I possibly can.

Today my doctor told me that if I lose any more weight, it would be unhealthy. Look at those baggy size 6 pants!


Just in case, I bagged all my big clothes and took them by cart to our storage locker.

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My life at present is far from “normal.” There are so many things I have to get used to, so many changes. Of course I can’t go back to living as I did before CFS. I’m almost 72 years old. Forced into retirement at 55, I’ve never experienced being well and not having to work, not having a plan for each day.

Even with my CFS limitations, I had a stable routine. As long as I lived inside my envelope, as we say, I knew what to expect and what I would do from day to day—mostly the same thing every day. Now, each day is different. I have no set routine. I’m off and running, running. I’ll be glad when I do settle down. When will I be able to get back to stitching? Is that what I want to do?

This change is disconcerting!

Thanks, everyone, for your comments and e-mail messages. It’s wonderful to hear from all of you.

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May 12th is CFS Awareness Day in the U.S., and around the world, I believe. Before I tell you more about this devastating ailment, I want you to know that I have recovered.

After 17 years of disabling symptoms and a life in seclusion, which I have described elsewhere, I am now free of symptoms and living a very active life. As my recovery began in February, it became increasingly difficult for me to blog or to correspond with my e-mail friends. I didn’t want to reveal what was happening to me and my life for fear that it would not continue and that I might not actually recover. There was less and less to write about, as I remained “closeted.” Now I am coming out. Believe me, it feels surreal. I am experiencing various re-entry challenges as I rejoin the world.

To illustrate the change in my life, I will tell you about some recent days.

Last week my dear friend Allie was here in Baltimore, teaching and giving a public lecture. As it happened, her classes were organized by another online friend, Susan, who lives about 15 minutes away from me. Gloria and I arranged to go to Allie’s “lecture,” which I put in quotes because it was an informal and intimate Power Point show-and-tell of Allie’s journey from sane quilter to crazy quilter and innovative textile artist. The next day, Susan and Allie came to visit me at Charlestown, where, by the way, Susan was married in our chapel 14 years ago.(More about our historic chapel another time.)

Chapel chancel

Here’s Allie with me in the chapel. Jowynn and Allie low

And here’s Susan with her old boss, the founder of Charlestown and Erickson Retirement Communities, John Erickson in bronze.


We had a glorious time together, including dinner in our Refectory—three hours of non-stop talk, except for a brief pause at the incredibly beautiful altar in the chapel.

That visit came after I had swum 13 laps around 7:00 a.m., exercised for 30 minutes, walked a mile two times, and was otherwise busy. I did lie down for one hour of meditation. That was Tuesday.

On Friday, after swimming 15 laps, I went to the mall on the Charlestown bus. It has been over ten years since I have been in a  mall, and this one is a mega-mall with five major department stores, 23 shoe stores, as many jewelry stores, three wings, two levels—well, most of you are very familiar with malls. I felt as though I had been dropped off in a foreign country. It was overwhelming. Of course I recognized the names “Macy’s,” “Nordstrom”, “JC Penney”, “Sears” and “Lord and Taylor”, but I had the barest notions about where to look for the items on my list.

For three hours, I was on my feet, walking and re-walking that mall, sitting only to try on shoes.

After I got home, I walked a mile with Ernie. Then made preparations for our weekend guests.

At 10:00 that night, our daughter Patti, granddaughter Melissa, grandson Patrick, and great-granddaughters Aly and Lilly arrived to spend the weekend. I met them, showed them their rooms, visited for a little while, then walked through three buildings back to our apartment.

The next day, having  made a secret plan with Aly and Lilly, I went to their guest apartment at 11:00 a.m. and took charge of them while Patti and Melissa went shopping. (!!!) The girls and I made pizzas (sorry, I forgot to take pictures), with a variety of veggies I had prepared for them to choose from. They had so much fun. Then the three of us went to see the model railroad in operation, played shuffleboard, and returned to their apartment to put the pizzas in the oven.

After our very successful pizza lunch, we went swimming. Aly and Lilly—


Patti and me, too.

In the pool

And Patrick.


Leaving the pool, I went to get Melissa and brought her back to my room for a one-on-one visit. Unfortunately, Melissa developed a migraine and had to be taken to the ER at about 5:00 p.m. Minutes after she and Patti left, Patrick arrived with Aly and Lilly. Again, I was in charge of the girls until they went back to their quarters at 9:00 p.m. They stitched, of course! And we had Chinese food delivered for dinner.

Soon after they left, Patti phoned that she and Melissa were on their way back from the ER. I remembered that I still had the Mother’s Day gift Patti had asked me to frame and wrap for the girls to give Melissa.

Patti’s photograph:

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I had also forgotten gifts I had for the girls. So to take the forgotten items, I walked back through three buildings, meeting Patti and Melissa at the elevator, then walked back home again. By then it was 10:00 p.m.

Having already accepted an invitation from my brother to join him and his family for brunch on Sunday, I let Patti and company go to the Inner Harbor on their own. Don picked me up at 10:30 a.m. and his son-in-law Phil brought me home at 5:00 p.m.

In my brother’s backyard, being serenaded by his 16-year-old grandson Caleb. (Yes, they have a Caleb, too, and a Josh.)


This is a shot of my sister-in-law Chickie, my brother Don, my niece Anne on the far right, and her 17-year-old triplet daughters, Heather, Sarah, and Emma, with me.


Home again, I read the paper and slept nine hours. Monday morning, I swam 15 laps and exercised for 30 minutes. I’m using a 7-lb. dumb bell as part of my regimen.

Never expecting to recover, content in my life of solitude and stitchery, I am still adjusting to being able to be active non-stop for 12 hours, as I did during the past three days. I’m still figuring out what I want to do with all the time and energy I now have.

It was hard for me to get used to living with CFS. It has also been hard for me to get used to living without it. I just realized: I’m going to have to rewrite “About me” for this blog!

Sadly, though, there are hundreds of thousands, probably millions, of people with ME-CFS, at various levels of disability. Formerly professional people have become homeless. I know one. It’s not unusual for husbands to abandon wives with ME-CFS. I know one. There are women living alone, without care-givers, struggling to survive. I know three of them. Healthy friends disappear, unable to tolerate the unpredictability and limitations of our lives. Mine are long gone. Most medical practitioners know nothing about ME-CFS; and because they are ignorant, they diagnose the patient as neurotic or malingering. The government agencies charged with investigating and researching health issues ignore this condition and misuse the funds appropriated for it. Can you imagine what would happen to you if you suddenly became completely unable to earn income? It took five years for me to get Social Security Disability Insurance. Without my husband’s income, what would have happened to me? There are no social agencies established to provide support for people with ME-CFS.

Some day this illness or whatever it is will be understood. Maybe it can be prevented. Maybe the treatment that enabled me to recover will also work for others and become widely available. Because these eventualities have not yet been realized, many people who know someone with ME-CFS doubt the reality of their symptoms and disability. People with ME-CFS usually look well. There are times when they may be able to function as a healthy person can–for a little while. That reinforces the skepticism of the unbelievers.

Worse than being in pain and unable to function is the knowledge that people, often people they care about, doubt that they are really ill.

ME-CFS is a devastating, life-changing condition from which recovery is exceedingly rare. Often the cause of death among people with ME-CFS is suicide.

For me, having CFS was a learning experience. Because of the wealth of resources and support available to me, CFS was a blessing. Instead of wanting to recover, I wanted to get all I could from the experience. I feel as though I have graduated. Maybe I have gotten what I needed to get from that experience, and I’m done with it. Now I have to figure out what I’m supposed to do next.

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