Hundreds of texts, tweets, Facebook posts, phone calls spread the sad news, EHTHS lost one of its own. George, Mr. Wilk, Coach, however we referred to him, he was ours and we will treasure him for so many things that touched us in so many different ways. For me, every time he walked up to the podium, I knew George would make us all laugh. George and I shared the experience of chronic illness and we could talk about the challenges of that. Once I started working in the library, George would come visit to talk, that common denominator (George would be impressed with word usage) made us friends. I haven't seen George for a year.
We spoke a few times but he was in the midst of battling his cancer. By October, the tides were turning for me as well. George wouldn't give up. His wife, of whom he loved, was right there with him. I still don't know how they found their strength, but I was and am inspired by the way George lived out his life. He continued to encourage and inspire us to never to give up. Yes, we lost the physical, larger than life presence, of one of us, one of the best of us. His legacy will continue to reach so many people. I will continue to think of you, take courage from you and hope that you are at peace. I've searched for a picture of George, one that would do justice to him. Maybe someone who reads the blog and has one will post it under comments.
Tuesday, August 6, 2013
Monday, August 5, 2013
Sunrise on the Beach
We rolled out of our beds about 5:15 am. Tina was being a good sport to head out toward Ocean City to take me to see the sunrise at 6:00 am. It was just one of those things on my list.
"When you arise in the morning, think of what a precious privilege it is to be alive - to breathe, to think, to enjoy, to love."
- Marcus Aurelius
And, how true that quote is. Even at that early hour, bikers and runners own the boardwalk. Lovers are wrapped together waiting for the sky to start to turn pink. Six or seven kids pull up with their smart phones to share the delight. A couple of men were searching for treasure with their metal detectors. And, Tina and I are taking our pictures. Wonder of wonders.
We watch the splendor of a new day. Such a peaceful moment, full of what lies ahead for the day. Unfortunately, what was ahead of me for the day, took me to my bed for most of the day.
Still learning to balance what I can and cannot do. "Goonies never say die."
"When you arise in the morning, think of what a precious privilege it is to be alive - to breathe, to think, to enjoy, to love."
- Marcus Aurelius
And, how true that quote is. Even at that early hour, bikers and runners own the boardwalk. Lovers are wrapped together waiting for the sky to start to turn pink. Six or seven kids pull up with their smart phones to share the delight. A couple of men were searching for treasure with their metal detectors. And, Tina and I are taking our pictures. Wonder of wonders.
We watch the splendor of a new day. Such a peaceful moment, full of what lies ahead for the day. Unfortunately, what was ahead of me for the day, took me to my bed for most of the day.
Still learning to balance what I can and cannot do. "Goonies never say die."
Friday, August 2, 2013
Discover South Jersey
After being home bound for so many months, these low humidity days let us take advantage of whatever gets us on the road, whether by car, wheelchair or both. With 2 O2 tanks filled, we set off often with a friend or two. I stopped in to TJ Maxx, my first shopping excursion since Dec. I brought a dress and a couple of tops.
Not a good idea. Thank goodness I waited two days before trying them on. My body shape has completely changed and I fear I will forever look 4 or 5 months pregnant. My new attire continues to be yoga pants but now for a different reason. Another day we walked to the new bridge to Ocean City and Tina met the challenge of pushing this pregnant looking woman up the incline. It was beautiful.
Thursday, another perfect day, we went to the Cape May Zoo.
Get there as soon as it opens and go in the opposite direction of the hordes of kids in summer camps. With no one around,we made our first stop, to say good morning to a cockatoo. I have witnesses that will testify that he said, "How ya doin'? How ya doin? I'm Cesear, I'm Cesear". What a way to start the day.
What a great place to stroll and enjoy watching the animals. Our major objective was the baby white leopards and they were a delight; playful, spunky, and damn cute.
Today, we went to Cameron Park on Rt. 9 in Upper Township. An easy walk around a lake, a great place to stroll, read, reflect. The water was still today, pink lilies were blooming. No bugs.
I must admit that after each one of these outings, nap time is calling me. I get so tired and I'm the one in the wheelchair. But, I'm treasuring these little adventures.
Not a good idea. Thank goodness I waited two days before trying them on. My body shape has completely changed and I fear I will forever look 4 or 5 months pregnant. My new attire continues to be yoga pants but now for a different reason. Another day we walked to the new bridge to Ocean City and Tina met the challenge of pushing this pregnant looking woman up the incline. It was beautiful.
Thursday, another perfect day, we went to the Cape May Zoo.
Get there as soon as it opens and go in the opposite direction of the hordes of kids in summer camps. With no one around,we made our first stop, to say good morning to a cockatoo. I have witnesses that will testify that he said, "How ya doin'? How ya doin? I'm Cesear, I'm Cesear". What a way to start the day.
What a great place to stroll and enjoy watching the animals. Our major objective was the baby white leopards and they were a delight; playful, spunky, and damn cute.
Today, we went to Cameron Park on Rt. 9 in Upper Township. An easy walk around a lake, a great place to stroll, read, reflect. The water was still today, pink lilies were blooming. No bugs.
I must admit that after each one of these outings, nap time is calling me. I get so tired and I'm the one in the wheelchair. But, I'm treasuring these little adventures.
Sunday, July 28, 2013
NEW JERSEY DEBRIEF
Grateful: My flight back to California this time--from Colleen's door to mine--took only 12 hours as compared to 24 hours in late May. Less Grateful: Only 2 of this trip's 10 Jersey Shore days had thermostat readings suitable for humans. Mais, que sera. Colleen and I made the best of our indoor incarceration: naps, Words With Friends, long stretches of reading, time spent with Mom & Camille & Leslie & visiting first cousins Mary & Sheila from the town of Olean in upstate New York where Mom & myself & Colleen & Camille were born, and drop-ins from friends. Most days near nightfall, Colleen and I took our spin around the neighborhood never without the charming accompaniment of cicadas and lightning bugs. After dark we watched great television, usually until quite late: "The Killing" on Sunday nights; "Forbrydelsen" which we streamed online, the original Danish version of "The Killing"; "Endeavor" on PBS, the prequel British series to "Inspector Morse." We even traveled back into the past with the very first episode of "Inspector Morse" with actor John Thaw playing Endeavor Morse as a fully fledged adult and Oxford-educated police detective. None of this would have been possible without air-conditioning.
At the outset of every visit to Colleen's over the past few years, she asks me what I want to do while I'm there. I never have an answer. However, this time I did--the New Jersey Pine Barrens--a mysterious, massive swath of South Jersey which has tugged at my curiosity and imagination for decades but which I had never laid eyes on. Colleen and Camille both started their families in the small rural community of Dorothy, but I didn't know until last week that Dorothy sits on an outer edge of the Barrens. I also didn't know until last week that my high school boyfriend lived on the edge of the Pine Barrens as well, further north. On no visit to his rural hometown of Pemberton did I hear a whisper about the Pine Barrens. I had heard of the Jersey Devil, yes, like every other New Jersey child and adult. But I had no clue that the legendary home of the Jersey Devil was so nearby, even to my family's own suburban town of Cinnaminson back then. I knew nothing about the Pine Barrens, real or imagined. And, actually, this ignorance persisted for quite a long time, even after I set out for California when I was 20.
Photo: The Jersey Devil
The Pine Barrens didn't capture my attention until much, much later when I learned sometime in the eighties that my favorite nonfiction writer then, John McPhee, had written a short book, one of his first, on the Pine Barrens. John McPhee never writes on anything insignificant, about anything that doesn't fascinate. I bought a copy of the book for myself and my mother, who drives alone through the Pine Barrens regularly--even now at age 90--to see her longtime friend Dorothea. (She never leaves the paved road and always travels with a cell phone and only in daylight, she tells us. Nonetheless, we daughters don't exactly rest easy when she takes these solitary trips into the pines.)
Before my trip east this time, I felt compelled to take the aging book off the shelf and start reading. I continued reading on the plane, and finished the book at Colleen's. In spite of its being a 45-year old firsthand account of the Pine Barrens, McPhee's short book was all I needed to whet my appetite to finally go there myself.
"You know how you always ask what I want to do when I visit?" I said to Colleen on Day 1.
"And you always say 'Nothing,' Colleen said, obviously expecting more of the same.
"Well, this time I do."
Colleen's eyes opened wide.
"I want to go to the Pine Barrens," I said. "Do you want to go with me?" I asked her. "Do you think you could physically do it?"
"Yes" and "Yes," she answered.
Grateful: My flight back to California this time--from Colleen's door to mine--took only 12 hours as compared to 24 hours in late May. Less Grateful: Only 2 of this trip's 10 Jersey Shore days had thermostat readings suitable for humans. Mais, que sera. Colleen and I made the best of our indoor incarceration: naps, Words With Friends, long stretches of reading, time spent with Mom & Camille & Leslie & visiting first cousins Mary & Sheila from the town of Olean in upstate New York where Mom & myself & Colleen & Camille were born, and drop-ins from friends. Most days near nightfall, Colleen and I took our spin around the neighborhood never without the charming accompaniment of cicadas and lightning bugs. After dark we watched great television, usually until quite late: "The Killing" on Sunday nights; "Forbrydelsen" which we streamed online, the original Danish version of "The Killing"; "Endeavor" on PBS, the prequel British series to "Inspector Morse." We even traveled back into the past with the very first episode of "Inspector Morse" with actor John Thaw playing Endeavor Morse as a fully fledged adult and Oxford-educated police detective. None of this would have been possible without air-conditioning.
The Pine Barrens didn't capture my attention until much, much later when I learned sometime in the eighties that my favorite nonfiction writer then, John McPhee, had written a short book, one of his first, on the Pine Barrens. John McPhee never writes on anything insignificant, about anything that doesn't fascinate. I bought a copy of the book for myself and my mother, who drives alone through the Pine Barrens regularly--even now at age 90--to see her longtime friend Dorothea. (She never leaves the paved road and always travels with a cell phone and only in daylight, she tells us. Nonetheless, we daughters don't exactly rest easy when she takes these solitary trips into the pines.)
Before my trip east this time, I felt compelled to take the aging book off the shelf and start reading. I continued reading on the plane, and finished the book at Colleen's. In spite of its being a 45-year old firsthand account of the Pine Barrens, McPhee's short book was all I needed to whet my appetite to finally go there myself.
"You know how you always ask what I want to do when I visit?" I said to Colleen on Day 1.
"And you always say 'Nothing,' Colleen said, obviously expecting more of the same.
"Well, this time I do."
Colleen's eyes opened wide.
"I want to go to the Pine Barrens," I said. "Do you want to go with me?" I asked her. "Do you think you could physically do it?"
"Yes" and "Yes," she answered.
to be continued
Saturday, July 27, 2013
Back to Baltimore
Thankfully, appointments had to be changed so Mignon and I set out for a one day trip to see Dr. Mathai at 11 and Dr. Wigley at 1, this past Tuesday. I was really looking forward to talking with both of them about my condition and what lies ahead. Dr. Mathai seemed surprised that I was doing as well as I am. Now that I am not seeking any aggressive treatment and there is no cure, the goal now is comfort. Might the progression slow down? It might. Positive thinking. It didn't sound like we'd do any more tests, no point in that. Dr. Mathai is an excellent doctor who tried everything he could to get me to Pittsburgh. I could sense he agreed we couldn't pull a rabbit out of a hat. His counsel and expertise was/is invaluable.
You know this guy has to be pretty special if I post a photo of myself looking like this!
Then, it was on to Dr. Wigley. Once again, mapquest gave us the wrong directions but this time we were lost in the city not in the pines. I hadn't seen Dr Wigley in months. Another great doctor, a major player in the scleroderma world.
Unfortunately, we forgot to take a picture of us together. But, here he is. He's in a documentary that is now playing at the Ritz in Philly called "Project Scleroderma: Beneath the Surface". If you have the inclination, you can get Dr. Wigley's segment on YouTube. Just type in name of film.
Anyway, he made some medication changes, thought I could try being on my own, having someone come in during the day, at least for now. He's had so much experience, I trust his judgement. He agrees to forgo the transplant was a good choice. I'm still on pallative care and considering hospice but a lot more questions need clarifications. Don't let the words shake you up, the bottom line, of course, like everything, is $$$$$$. That's not to say I don't have more decisions to make. Slow and steady. Breathe. Wigley and Mathai, along with my nurse, Theresa, have convinced me to go ahead now and take the xanax to help with breathing. Maybe a bit of morphine might help. Staying a head of symptoms getting out of control. Again, as I tell myself, don't let the words shake you up. These are changes that will add to maximizing the quality of my life. It does seem scary though. If I was 20, I'd probably be excited, getting permission to take some "downers".
Moi? Short Tempered?
The feeding tube has been out for a few weeks, no hospital visits for lasix IV and generally I feel better. I still need help but I want to be independent. "I can do it myself. I just said that. I know what I'm doing. Give me some credit." I can think of others statements I've blurted out.
Once known for my patience, I slowly began to realize I was being short with some of my family and friends. I had a sister, gently confirm, that "yes indeedy, you have been snippy."
Once again, get back to the breath, in and out. Somedays, it's so hard when you can't keep up. Whether its conversation, going to the beach, visiting others, my frustration gets the best of me. So, on the one hand, as I get a little stronger, I'm expecting everyone to just know that. I see it now.
Next time, I'll try to pause first, take a breath and try not to be too bitchy.
Once known for my patience, I slowly began to realize I was being short with some of my family and friends. I had a sister, gently confirm, that "yes indeedy, you have been snippy."
Once again, get back to the breath, in and out. Somedays, it's so hard when you can't keep up. Whether its conversation, going to the beach, visiting others, my frustration gets the best of me. So, on the one hand, as I get a little stronger, I'm expecting everyone to just know that. I see it now.
Next time, I'll try to pause first, take a breath and try not to be too bitchy.
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