Saturday, December 17, 2011
Jamie calls his Asian Chicken Noodle Broth & that's what the guys had but we made two soups last night, one with veggie broth & tofu for me. Yum.
Let me know if you try it too.
Jamie says you can make it in 17 minutes (if you can multitask). We never work as quickly as him.
He says, "This is a really quick dish but you're going to have to multitask, cooking your veg & noodles in one pan & your chicken in another. Read through the recipe before you start so you'll be prepared for what's going to happen. You'll be amazed at the results - just like something you can get in a posh noodle bar." (True.)
serves 2 (we doubled it so each version served 2)
1 Tablespoon mixed seeds (pumpkin, poppy, sunflower) - we used all three & some sesame
a small handful of raw cashew nuts
1 quart chicken broth, preferably organic (or organic veggie broth)
2 skinless chicken breast fillets, preferably free-range, organic
(We asked the butcher to slice them into strips.)
Or one 10 oz pkg of Super Firm tofu, cut into strips (I like Wildwood.)
2 teaspoons five-spice powder (I wasn't sure how I was supposed to know which five spices he meant but the guys at the meat counter said there was a spice called five-spice powder. Sure enough, in the spice isle, there it was.)
sea salt & freshly ground black pepper
a thumb-sized piece of fresh root ginger
1/2 - 1 fresh red chile, to your taste (We ended up sharing one.)
4 ounces rice sticks or vermicelli (We didn't see these particular noodles at our store, ended up buying something called Chinese Noodles that worked great.)
a handful of snow peas
6 thin asparagus spears or 4 regular-sized spears (We split a bunch.)
6 fresh baby corn or 1/2 cup fresh corn kernels (There was no fresh corn at the store this time of year. I was going to use frozen corn kernels but then saw a can of baby corn & used that instead.)
juice of 1 lime
a small handful of spinach leaves
Put a medium frying pan or wok on a high head and add the seeds & cashew nuts to it straight away. (We let the cashews cook a little before adding the smaller seeds so they wouldn't burn.) While it is heating up, put a large saucepan on high heat. Fill the saucepan with the chicken (or veggie) broth, heat until very hot, and put a lid on it. (Next time, we will do this step later, after cooking the chicken/tofu.) Toss the seeds & nuts around until heated through nicely - this will take a couple of minutes.
While this is happening, slice your chicken breasts lengthways into 3 pieces & put them into a bowl. (Or slice your tofu.) Sprinkel the chicken (or tofu) with the five-spice powder and a good pinch of salt & pepper and stir. When the seeds and nuts are done, transfer them to a plate. Put the empty pan back on a high heat. Add a little olive oil to your hot pan with your slices of chicken (or tofu) and cook for 5 minutes, until golden, tossing and turning every now and again.
While the chicken (or tofu) is cooking, peel and finely slice your ginger and slice your chile. Take the lid off the pan with the chicken (or veggie) broth and add half the chile, all the ginger, your rice sticks (or vermicelli) (or Chinese noodles), snow peas, asparagus, and corn with 2 Tablespoons of soy sauce. Bring to a boil and cook for 2 to 3 minutes, stiring. (If your noodles need to be cooked longer, add them first, adding the veggies with only 2-3 minutes of cooking time left. Our Chinese noodles were supposed to be done in 3 minutes, so we were able to add them at the same time as the veggies. We used a fork to separate the noodles.)
Halve the line & squeeze in the juice. By the time the rice sticks/vermicelli/noodles & veggies are done, the chicken (or tofu) will be cooked. Take a pice of chicken out & slice it lengthways to check it it's cooked all the way through. When done, remove all the chicken from the pan & slice each piece in half to expose the juicy chicken inside. Please don't be tempted to overcook it. (I loved my sauteed tofu, seasoned w/the five spice mix, salt & pepper & kept snacking on it while working on the veggies. I broke the strips up to show the white inside.)
To serve, divide the spinach leaves between your bowls and pour over the broth, rice sticks/vermicelli/noodles, and vegetables. (Our asparagus sunk to the bottom. We had to search of it.) Divide the chicken (or tofu) pieces over and scatter with the toasted seeds, cashews, and remaining chile.
Saturday, November 19, 2011
This winter, she will spend three weeks in Kigali, Rwanda, participating in a Young Leaders Human Rights Delegation, through Global Youth Connect.
She will be partnering with Health Development Initiative, a local health advocacy organization, to improve the current family-planning situation in Rwanda.
We'd just walked through Union Square, past a giant Christmas tree. Nearby, people were ice skating. We'd passed a Starbucks, a Macy's, Saks Fifth Avenue, Tiffany & Co., billboards for Niketown, and the iPad2. Meanwhile, this man slowly shuffled along, hunched over, in his wheelchair, with an empty cup in his lap, too downtrodden even to hold up his head.
He knows we won't meet his gaze or do anything to help. It sickens me. It also reminded me of another man, in a different town, on an earlier holiday. It shouldn't be this way.
On the way back to our car, we were stopped by man who said he was with the Fun Patrol, somehow affiliated with the SF Police & that they were collecting donations for a local soup kitchen. I was happy to be able to make a small donation but wish I could do more.
Saturday, November 12, 2011
This home-building blitz provides an opportunity for those in surrounding communities to contribute their time and money to help their neighbors in need.
One of the people who traveled with my dad, on Thursday, wrote, "The three of us worked in Habitat House #3, at 2209 Kentucky, about three blocks west of the Joplin High School, where no clean-up has occurred. Although we arrived on a frosty morning, prepared to work in the cold, we spent the day inside a heated house with only occasional trips outside for tools. Bill did spend a lot of time at an outdoor saw but as least it was on the sunny side of the house."
Friday, November 11, 2011
Once, it must have been when I was 3 years old, Joe was in the hospital and I was called upon to give him my brand new, bright, red fire truck, to play with, in the hospital. At 3 years old, we don’t understand these things, but I was so glad when he came home from the hospital that I never asked about the bright, red fire engine. Having Joe home was far more important than a toy.
Joe paved the way and blazed trails for me all of our lives. In fact, I blame him for a story we’ve heard all our lives. Sometime shortly after Joe had gotten home from the hospital, we somehow moved a very large and very heavy, metal bunk bed set across the room and made a fort to play under. Years later, and often only after a few drinks, adults would add gross details about the stinky and unsanitary mess we smeared on the walls to keep the evil ones away from this, our special fort.
While Joe paved the way and blazed many a trail for me, he was not always the one that caused, or even came up with the things that we did - with the messes we made and the punishments we received. No doubt, he was purely angelic that Saturday morning when we got into a fight and managed to break both his and my brand new eyeglasses. We feared and had fully earned the punishment and mayhem that followed when our Mom and Dad saw what we had done.
Joe taught me to ride a bicycle and together we would roar down a gravel road and across an open field. We were free from parental oversight for a few minutes. We had escaped into a pretend land. Sometimes, we were mountain men exploring the Wild West on our stallions. Sometimes, we were cavalry chasing renegade Indians. Sometimes, we were soldiers charging an unseen but ever present enemy.
With Joe, being just boys was never enough. Joe had ridden these bicycle trails many times. Joe had already blazed these bike trails. He had gone down the road before and he knew where the dangers were and how to avoid them. Joe was my brother and even though we fought over little things, and sometimes we fought just for the fun of fighting, he was always ready to protect me.
When we were given large jobs to do, Joe always found ways to make work more fun. Of course, sometimes, having fun would also mean we were doing something that would get us in trouble later.
When we were sent out to pick up rotting pears, we’d dawdle around. Then, instead of picking up pears, we’d play with the toy soldiers Joe always had in his pockets. No one knew then that he’d later give his entire life to military service and to the veterans and wounded warriors about whom he cared so deeply.
But, when we were little, Joe and I couldn’t just pick up the rotting pears. Instead, we’d pick up a few, stomp on a few, and then we’d very carefully hold them in one hand and yank out the stems, as if they were the pins of hand grenades.
After we’d successfully used these rotten pears to drive off all our imaginary enemies, we'd begin pummeling each other with the most rotten pears we could find. But, due to his wisdom and experience, when we were bored with the pears, we found, nearby, even more powerful weapons. Joe taught me that rotten pears were nothing compared to the long lasting and biting stench of a rotten tomato carefully thrown to land just under a brother’s nose.
Joe was ahead of me in school. He paved the way and blazed trails for me time and time again. The teachers he had, somehow, expected me to be as smart as Joe. I never matched his intelligence, his wisdom, or the understanding he had of philosophy.
Joe excelled in high school ROTC. He paved the way, he blazed trails for me in ROTC. He taught me how to read a topographical map. He taught me how to use a lensatic compass. He showed me how to shine brass, how to iron wool uniforms, and how to do close order drill. At that age, we didn’t fight anymore, but we did practice what he’d learned about hand-to-hand combat.
Outside or inside, it didn’t matter to us. We’d practice the one man carry. We’d practice bayonet: thrusts and parries, and blocking moves. But, the most fun was taking turns with hip throws, leg sweeps, and the other moves we learned in ROTC and in Judo class.
Joe taught me about marksmanship. While we were little, he dared me to use a BB gun and shoot the buttons of shirts hanging on the clothesline. He showed me how to shoot a mud dauber with a BB gun. Joe had shown me the path to great marksmanship.
Because of Joe's teaching, before I ever heard my first screaming drill sergeant, Joe had taught me how to obtain and maintain a sharp sight picture. It was Joe who taught me that while shooting I always had to go through the process of: breathe, relax, aim, slack and, only then, gently squeeze the trigger of a rifle or pistol.
Joe left home and joined the U.S. Army, after high school. He stopped back, in his uniform, after Basic Training, and between his assignments. I would see him, from time to time, but sadly we did not keep in touch, as we should have. He served his country in foreign deployment after foreign deployment. He faced dangers and horrors about which he never told any of his family.
Joe paved the way and blazed trails. He dedicated his entire life for you and for all of us. When he finished his military career he had a burning desire to help those, who, like he, had become wounded warriors.
He knew, because of the trails he had blazed, the ways he had traveled, and the post-traumatic stress that he had endured that he could help those who followed in his footsteps. After retirement, he used his superior intellect and he quickly finished his undergraduate requirements, studied hard and earned his Master’s degree in Social Work.
Joe was special. His experience had given him a perspective and a depth of understanding those he served could just sense. Joe had faced, time and time again, the horror that is war. He had fought and learned to deal with the ever present memories of Post-Traumatic Stress. Once again, Joe was paving the way, blazing safe trails for those who came after him.
As Joe’s military career continued, he and I, for no good reason, never kept in close contact. That was my loss. Folks, we all know that when Joe was serious, we could tell. I remember him, from time to time, saying, “Listen up, and pay attention. What I am telling you is not BS."
So, folks, now that Joe is not here to say it, I’ll say it, "Listen up, pay attention. This is not BS." Let me tell you, if you have brother or sister, never, never lose touch with them. Reconnecting later in life is good, but it’s not the same. Spend time with them before they are suddenly diagnosed with a terminal illness. As a trained therapist, Joe would, no doubt, challenge – dare you - to leave here, this morning, committed to face your fears, to overcome them and to embrace life and love.
Joe paved the way and blazed, for me, a trail, in Vietnam. I will never forget getting a letter from him, while we were both in Vietnam, telling me to come and see him. I will never forget walking into his supply depot, in Pleiku, Vietnam. I will never forget having coffee with First Sergeant Joseph Powell, thousands and thousands of miles away from here. I will never forget as he told me that since he had returned to Vietnam I didn’t have to stay in Vietnam any longer.
Joe’s return to danger paved for me a path to return to the good ole USA. I will never forget listening to Joe as he told me that he was much safer as a supply sergeant than I was as an Infantry Platoon leader, going out into the bush, day after day, on “search and destroy” missions.
I will never forget when Joe shoved an already signed U.S. Army form across the table, releasing his right to be transferred back to the US, to me. I will never forget when Joe stood up and said, “Now get your ass back to your unit, fill out the rest of this form and get the hell out of Vietnam."
Thank you. Thank you, Brother Joe. Once again, you prepared the way. This time, you saved my life.
Joe, I wish that I could have done the same for you, as you lay there, in that hospital bed, and at Rosewood. When you called out and said, “I am going to die. I don’t want to die. Bill, make it go away," I could do nothing but pray and cry.
As the horrible brain tumor was eating away at Joe, my brother that had always blazed trails for me and had always paved the way, I could do nothing. I could remind him of the fun and mayhem we had caused as kids. I could remind him of the rotten pears. And, yes, when he laid there in that hospital bed and asked me to pull his finger, I did. Then, a sly smile would come to his face and the odor of the room changed.
Oh, I so wish I could have done more for you, Joe. I could not blaze the trail for you, or pave the way for you. I could do nothing to save you, Joe. I could not even go with you. Joe, I am so sorry that I could not ease the struggle of this, your last and hardest, battle.
But, I know, deep down inside of my soul, when I, like you, lie on my hospital bed, when I, see the bright light, and when I see angels coming for me, you will have, once again, gone before me to prepare the way.
Thank you for being my brother. - Brother Bill
MSG (Ret.) Joseph Vernon Powell, 67, passed away at a Killeen nursing home, August 29, 2011. Mr. Powell was born April 27, 1944, to Vincent and Mary Powell in Kansas City, Missouri. He married Somjit Boonpan on April 10, 1972 at the American Embassy in Bangkok, Thailand.
Mr. Powell retired from the U. S. Army in 1991 as a Master Sergeant. He served during the Vietnam conflict and received the Meritorious Service Medal, Army Commendation Medal with 5 Oak Leaf Clusters, Good Conduct Medal (8th award), National Defense Service Medal, Vietnam Service Medal with 2 silver and 2 bronze service stars, Army Service Ribbon, Overseas Service Ribbon Numeral 6, Republic of Vietnam Campaign Medal, Republic of Vietnam Gallantry Cross Unit Citation Badge with Palm, Expert Rifle Badge, and the Army Achievement Medal.
Mr. Powell was deeply committed to his fellow service members, especially to those who had faced and were struggling to deal with Post-Traumatic Stress. Following his retirement from the U.S. Army, Mr. Powell completed his bachelors’ degree and then completed a Masters in Social Work (MSW). He then committed the rest of his professional life to working with veterans and Wounded Warriors at the Austin Vet Center.
Mr. Powell is preceded in death by his parents, one daughter, Tassanee Carver, and a sister, Cathy Wilson.
Survivors include his wife of 39 years, Somjit; one daughter, Varnee Baney; one son, Sakda Powell; five brothers, Jerry Powell of Raleigh, NC; Bill Powell of Bella Vista, AR; Brian Powell of Los Fresnos, TX; Mike Powell of Fresno, CA; Patrick Powell, of Tijuana, Mexico; two sisters, Alice Pita of Houston; TX; and Maria Norton of Logan, UT; one granddaughter, Kathleen Kile of Virginia and Chawarat Boonpan of Thailand.
"I was really sorry to hear of Joe’s passing. The Viet Nam vets I referred to Joe were VERY selective as to who they would cooperate with. Many of them had pretty much given up on the VA and society in general, but he was able to reach those men, they just loved him. God rest his soul, he will be missed." ~ Susan Lewis, Asst. Veterans Service Officer, Travis Co. Veterans Services.
Words from His Beloved Veterans:
“To me, Joe was special. He had more influence than anyone in my life. He gave me back my self-respect. He wouldn’t let me give up. He was a soldier’s soldier. He knew his history. Joe always had a good joke, too.” ~ Tom
“Joe, thank you for saving my life. If it hadn’t been for him pushing me to come to the group, I wouldn’t be here today. He made time for me which was something I needed. Joe loved the Buffalo Soldiers—on behalf of the Buffalo Soldiers, we thank you.” ~ James
“He always welcomed me to the Vet Center. He would always smile at me.”~ Raul
Tuesday, November 08, 2011
He says my brother has a 1 in 4 chance of being a match & that they can collect bone marrow in a relatively pain-free way, similar to how they collect blood, these days.
He says a transplant could be curative. Or, it could kill me. Or, it could give me a condition that would negatively impact my quality of life forever. Not completely on board with the idea of letting them do more horribly invasive stuff just yet, especially because I basically feel fine now.
noon, on Sunday, we got this treat from my hematologist, "The bone
marrow biopsy appears to show Aplastic Anemia, but the results are not
We decided, rather than freaking out about it, we'd follow his directive to, "Have a great Halloween!"
he clarified that while I do have low red blood cell & platelet
levels, they aren't scary low, the way my Neutrophil counts have been.
The concern is that whatever has been keeping my Neutrophil counts low
might be starting to impact my RBCs & Platelets too.
My doctor's never treated anyone with Aplastic Anemia & wants me to be treated by someone who has dealt with it before.
Today, I've been on the phone w/Stanford & UCSF. We're working on coming up with a plan.
Cam found this great, short video that does a good job explaining Aplastic Anemia, my new bad "A" words.
Monday, October 24, 2011
But, I do want to be honest about being scared & about needing encouragement &, so I want to try to catch you up if you are new to the story, or just aren't sure where things stand.
Here's a link to a health crisis recap I wrote in April of 2010, talking about stuff that started in August/September/October of 2009, the beginning of all this mess.
At that same time, I wrote two posts about a treatment I was about to try. Treatment Overview #1;
Treatment Overview #2
In those posts, I didn't tell you that the treatment involved infusing me with cells from a horse (ATG) & with another drug that is used in chemotherapy & given to people who have had organ transplants (Cyclosporine). On 5/23/10, I did say I was scared about it.
I had the treatment at the end of May.
On 6/10/10, unhappy about side effects (& in the midst of 'roid rage), I rant & rave at my doctor, "Your mother is a hamster."
On 7/12/10, Before a doctor's appointment, I wrote, "I am worried the doctor is going to tell me it is my fault that the treatment didn't work." That afternoon, I wrote about how I feel sorry for the doctors for having to deal with me. "Poor Dr. Lopez."
I was pretty quiet about things for awhile.
Then, in October of 2010, I shared with a new doctor that I was wondering if it was even a real thing. She said, that regardless of what other people saw or thought, it was important for me to know that what I am facing is real & that I do need an immune system & it is important for me to keep working towards making mine as strong as possible. (Chased by Trucks? - Health Update from 10/20/10)
In the meantime, I started having good numbers.
On 2/3/11, in preparation for an appointment with a specialist at UCSF, I shared this recap, in which, I wrote, "Since late September, my ANCs have consistently been above 1000. Three times, they were above 2300. (An ANC above 1500 is considered normal.) Most recently, my ANC was 2704!"
Since, things were looking great, at the time, the appointment with UCSF was pretty anti-climatic. Net was, "It appears the treatment has worked." On 2/7/11, I wrote, "Nothing Earth-Shattering from UCSF."
On 3/30/11, I went to back to see the surgeon who'd operated on me. He'd wanted to do a one-year, post-op follow-up. It ended up being about a year & a half after the surgery before I saw him. He wanted me to get a CT Scan to make sure everything was OK. We're still paying for that CT Scan but it did say everything looked OK. Here's what I wrote about something he said during that visit. "It wasn't a home run but we're still winning."
Because things had been looking so good in February, they didn't even check my blood for three months. When they checked it, at the end of May, it was much lower. "For those keeping score. ANC of 1100 called, Good. Fine."
As planned, the doctor allowed me to stop taking a medication I'd been on for a year at the end of May. When we checked my numbers at the end of June 2011, they'd plummeted. "Well, Crap. (ANC of 200)" On 6/23/11, I wrote, "This isn't new but apparently it isn't over either."
At that time, they asked me to try taking a medication I'd taken in the past w/varied results (Neupogen). It was supposed to increase my number of Neutrophils. We got my ANC up to 700 but that didn't seem like much of a boost.
On 7/11/11, I wrote, "They want me to try taking Cyclosporine again." This was the medication I'd been on for a year. I'd been taking it when I had good numbers for eight months but it was part of a treatment involving other medications. My doctor didn't want to put me back in the hospital or give me those other medications if we didn't have to.
I took the medication (Cyclosporine) for several weeks but it didn't seem to be able to work any magic by itself. In July, my counts ranged from 100-300.
Despite these scary numbers, the doctor had started saying I was, "fine." He said I wasn't going to get something I couldn't fight.
In August, I said, if I was fine, could they just leave me alone, please? They said, "OK."
Then, in September, I got sick. I didn't even really realize I was sick until, suddenly, I was very sick & calling the doctors for help. On 10/9, they put me on antibiotics.
On, 10/10/11, they checked my ANC & this time, it was zero. I'd never hit zero before.
They put me back on the medication they hoped would boost my cells (Neupogen). After a couple of shots, on 10/14/11, my ANC was still zero.
A few shots later & they checked again. When he got the results, on 10/17/11, my doctor told me I had one Neutrophil.
Today, I got the paperwork from that day & see that the one he was referring to was the fact that only one percent of my white blood cells were Neutrophils. (Not great considering 50-75% of my WBCs are supposed to be Neutrophils but, my ANC was actually 26, a bit better than zero or one.)
On 10/19/11, I was invited to see a doctor who specializes in Neutropenia. I have an appointment with him on 12/1, in Seattle.
This morning, after week more of shots, they checked my levels again. This time, the doctor said, "WBC is 2.1 (it should be 4-11) with 100 Neutrophils (they should be 1500). You have also developed anemia, which is unexplained. It is time for another bone marrow biopsy. This can be done by me, or the doctor in Seattle. Let me know what works for you."
Today, the hematologist said, "It is time for another bone marrow biopsy."
That'll be #3.
I know this is a convoluted mess but it is the best I could do, right now. I hope it helps explain things to those of you who are new & brings those of you who have been following along up to speed. As always, thanks for caring.
Gonna go play w/Sam now.
Saturday, September 10, 2011
Before leaving, I went into Michael's room to be with him & his mother. She stood on one side of his bed, talking with him & lovingly stroking his forehead. She talked about how there were so many things they were supposed to do together, how they were supposed to have decades ahead.
I stood on his right side & held his hand. I talked with him a bit too but not as much or as aggressively as I had the other day, when we still hoped he might wake up & start answering us. When we still hoped he was with us & hadn't gone, wasn't lost. So many people wanted so badly for that to be so. If only wanting it could have made it so...
Michael's brother arrived. I decided I was ready to step out, let him have time with his mom, with his brother. While I greatly appreciated all of the loving-kindness & comradery I had shared with Michael's friends & loved-ones in the waiting room of that ICU, I needed space & time to sort it all out.
I've said it before & I will say it again, "Losing Michael is a horrible tragedy. The world needs more of him, not less."
So, I left. I didn't even really say goodbye to most people. I told a couple, then, practically snuck out, down the stairwell, like maybe I was just going to move my car to a new two-hour parking spot, but, my two hours were up. My days of waiting with baited breath, of hoping & wishing & wondering were up. My friend was gone. I decided I was getting out of there too.
It felt somewhat cowardly & even shameful to leave the people I left behind, to face what I knew they would have to face, in the coming hours & days, but I had done all I could do & I was thankful that I was one of the ones who was able to leave, had the luxury of being able to flee. I believed Michael would understand. I hoped those who love him would too.
So, I got in my car & drove home, back, across the Golden Gate Bridge & started pulling things out of our apartment's tiny storage closet. I sorted & organized & packed our camping gear. We hadn't been camping in over a year, since Yosemite in April of 2010. We'd been wanting to go, hoping to go, planning to go, I was going. (Y1, Y2, Y3) Although, I wasn't sure where....
I went back inside & got out a map & tried to find a place another CASA volunteer turned friend had told me about, a place she'd visited, south of here, where there were all these really cool caves with bats. I decided that I thought she was talking about Pinnacles National Monument & started thinking that's where we should go.
Cameron had just finished his work week & was going to be able to get away for four days. (Sam was traveling with the family of one of his friends.) When Cameron pointed out that because it is about 60 miles inland, Pinnacles was going to be in the 90s that weekend, I started to think his idea of sticking to the coast was a better one.
But, I didn't want what I had, what I already knew. I wanted new & different, startling, breath-taking beauty. I wanted a place to get away, to escape, to sit & think & process & grieve & mourn & reflect & remember & to just be.
Cam said, if we left before the traffic got bad & just drove, that we could pretty much make it to Oregon that night. Oregon was a place neither of us had been, a place we both think we might want to live someday. They say, "Oregon is for dreamers." Maybe it was the place for us?
I took a look at some photos another CASA volunteer turned friend had shared with me of her bike ride down the Oregon & California coast. I flagged places she'd been I wanted to go, googled directions to see how far away these places were, to see what was reasonable & realistic. Then, we just got in the car & were gone.
Friday, September 09, 2011
As a CASA, Michael voluntarily committed to step into the life of a child, who has faced abuse or neglect, and to be there on a regular basis. Michael agreed to pay attention to how things were going, be in regular communication with those who are important in the child’s life, listen to their perspectives, then provide his own. Michael was asked to provide fact-based observations & recommendations and put them into a written report for the court.
CASA is a national organization, started in the 70s, by a judge who realized that while most of the professionals who are charged with caring for a child who is a dependent of the court have the child’s best interest at heart, they are asked to look out for so many children that they aren’t able to know each child personally.
The idea behind CASA is, “Each one, reach one.” That way, when judges, attorneys, and social workers are in court, making decisions about what is right for a child, there would be at least one person there, in the courtroom who could say, “I know this child.” “Here is what I have seen, heard and what I recommend.”
Michael agreed to do these things for at least 18 months (the organization’s minimum commitment), which, of course, he exceed. It was my job to help him select which case, which child’s set of circumstances would be the best match, then, offer supervision and support.
Michael had gone through training with a woman who was his friend. They hoped to work on a case together. We had a set of siblings on our waiting list, an eight-year-old girl, and a ten-year-old boy who were new to the foster care system.
We thought their case would be a good match. Michael and his friend agreed to become their court-appointed advocates. At almost the same time, a major change happened in the life of Michael’s friend. She wasn’t able to be there in the way she had hoped. Michael and I partnered to pick-up the slack until she would be more free. He met the kids on his own in a foster home that was conveniently located blocks from where he was working. (At the time he was employed as the director of the Haight Ashbury Food Program, supporting the principle that freedom from hunger is a right.)
The kids warmed to Michael immediately. However, a short time into their stay in this home, it came out that some of the kids’ basic needs weren’t being met. Suddenly, they were yanked out of this home and put into a new foster home. Almost before we could get the address of the new home, we heard about alarming, concerning things that may have happened in that new home and found out the kids were being moved again. This time, they were moved to Vallejo, a community over 30 miles north of San Francisco, in the East Bay. With traffic, it could easily take an hour to reach by car. Michael didn’t have a car. He didn’t need a car to navigate the city but this community was beyond the reach of BART, our Bay Area Transit System.
Michael’s friend, who had a car and was supposed to be making this commitment with him, realized she was not going to be able to uphold her end of the agreement. She decided to come off the case. Despite these challenges and obstacles, Michael was committed. He already cared and said he would be happy to become the advocate for both kids.
He brought donated presents to them that first holiday season. He offered support to this foster family who was providing the kids with things like swimming lessons, a bike, a yard, and loving-kindness. Michael spoke with the kids’ therapist, attended meetings at their school, got the court to order tutoring, applied for a grant and received funds to help buy new school clothes for them the following fall. The list goes on.
teering as an advocate for those in need, is just a glimpse, a tiny tip of the iceberg into the wonderful person who was my friend, Michael Scribner.
Tuesday, August 30, 2011
7/27/11 @ 1:15pm - Yesterday, a dear friend of mine was in the hospital, scheduled to have surgery to repair a broken bone. While he was getting ready for the surgery, he was being given some calming medicines. Then, unexpectedly, his heart stopped beating.
Thankfully, the doctors were able to resuscitate him. Right now, he is being kept unconscious while undergoing a treatment that is intended to protect his brain.
His mom is flying here to be with him. I am planning to be at the hospital tonight to offer support to his family & other friends. Your thoughts, prayers, well-wishes & positive energy are appreciated. Love, Mary
7/28/11 @ 5:30am - Awake, thinking about my dear friend, Michael. So thankful to have been able to be with him yesterday, to talk to him & hold his hand, to remind him that we need him, to meet his mom & to celebrate our love for him with some of the amazing people who are his friends. We are ready for him to wake up & join the party. Thank you for caring about him.
7/28/11 @ 12:58pm - About to head to the hospital where I plan to play/sing this song for Michael. "Won't you come out to play?" "Greet the brand new day." "The sun is up. The sky is blue. It's beautiful & so are you." "Won't you come out to play?" "Open up your eyes. See the sunny skies." "The wind is low. The birds'll sing that you are part of everything." "Won't you open up your eyes?"
7/29/11 @ 6:38am - Feeling quiet today. (Thanks for asking & caring.)
7/29/11 @ 1:44pm - I'm going to go offline for a few days. No cell phone or internet. I've loaded the camping gear in the car & am about to get out a map to see if I can find a park I've heard of, somewhere south of here, that has awesome caves. I'm going to take space & take time for myself to just be, to breathe, contemplate, reflect...
8/1/11 @ 7:07pm - Back home. Slowly rejoining the world. Hope each of you is well. Much love...
8/2/11 @ 10:18am - Still working on how to answer you guys who are wondering, "How is your friend, Michael?" I left the hospital on Friday, shortly after hearing that a neurologist said he no longer had brain activity. Needed (still need) space & time to sort it all out. Losing Michael is a horrible tragedy. The world needs more of him, not less.
8/2/11 @ 10:17am - Michael wasn't my lover but we shared intimate parts of ourselves with each other. I will miss him always & forever, every day. "Goodbye, My Friend. You have been the one. You have been the one for me." "And I still hold your hand in mine." "I'm so hollow..."
8/2/11 @ 5:41pm - Just got a chance to read this loving, touching story written about my friend, Michael. It gives you a glimpse of his beauty (& more info about his passing). I especially like the part where Colleen says, "In honor of Michael, may we continue to learn and grow, seek and explore, live and love at full throttle with no limitations, no fear, no holds barred – just as he did."
8/3/11 @ 4:43am - "Maybe the best way we can honor his memory is to amplify what I see in everyone Michael touched. We can hold on to something he stood for: kindness, good humor, joy, perseverance, or even rocking a red dress." "Even if the vessel that held Michael is no more, the concept of Michael can stay with us in how we treat others and how we ourselves continue to live."
8/3/11 - 5:15am -"Though difficult, I am mindful that this kind of grief can only be experienced by someone who has known a true and wonderful friendship." "Saddened by my loss? Yes." "Grateful for the experience? Yes!" ~ Toby Causby (Who is like a brother to Michael.)
8/15/11 - 11:53am - "It is a beautiful life. And I'm so happy. And I miss my friend. I miss you."
9/7/11 - 6:25am - "Michael the Child Advocate" by Mary Maddux
8/15/11 - 2:20pm -Join us in Celebrating the Life of Michael Scribner: Dear Friends and Family of Michael, For the last several years, Michael celebrated his birthday (and many other occasions) with a picnic in Dolores Park. We are continuing the tradition by celebrating his birthday (September 13th) and his life with a vegan potluck in his honor. Michael's mother Terri, his stepdad Dick, and his stepsisters are coming from Michigan to join us all.
Place: Dolores Park - San Francisco
Date: September 11, 2011
Time: 12 pm to 5 pm
8/15/11 - 3:32pm - "A friend is one to whom one may pour out all the contents of one's heart, chaff and grain together, knowing that the gentlest of hands will take and sift it, keep what is worth keeping and with a breath of kindness blow the rest away."~ Arabian Proverb
Monday, July 11, 2011
You may remember that early last summer, I was hospitalized while I was given an immunosuppressive treatment for what doctors think is an auto-immune condition.
Results were up & down for the first few months but then, starting in late September, my numbers got better & stayed good for a period of eight months. Everyone was hoping that the treatment had fixed the problem, that I was "better."
The treatment involved three medications. Doctors thought it would be best if I stayed on one of them for a year. In mid-May, when it had been a year, I stopped taking it. We checked my numbers at that time & they were considered, "fine" called, "good."
Then, in mid-June, after a month with no medication, we checked back. I was hoping my numbers would be great. Instead, they were lousy, incredibly so. My doctor said it appears this is a condition I have, something we'll need to work on managing rather than expecting to cure.
Last month, he asked me to try a medication called Neupogen in hopes it would boost my numbers to safe enough levels w/o my having to go on the other medication again. The Neupogen gave my numbers a bit of a boost but not enough to make us comfortable, especially since the idea is that something is attacking my cells. Just increasing them won't do the trick if something is knocking them down.
Today, he said he wants to try having me go back on one of the immunosuppressant medications to see if that will work better. That medicine, Cyclosporine, is given to people who have had organ transplants to try to keep their body's defense cells from attacking something good & necessary. We'll see if it will keep my lymphocytes from attacking my neutrophils.
He wants to start checking my blood work every week again for awhile. So, that's the plan. Feel free to contact me directly if you have questions or would like to discuss. Otherwise, as always, thanks for your care & support.
Thursday, June 23, 2011
Yesterday was a day full of doctors & dentist appointments. Sam had three baby teeth pulled. (They were preventing his permanent teeth from coming in.) He also had a check-up w/his pediatrician. In the midst of it all, we stopped by the hematologist's office so I could get some blood work done.
We were checking to see how things looked after a month of no medication/treatment. As 1500 is considered the low end of the normal range, I'd been a bit bummed that my last neutrophil count was 1100 at the end of May. I was hoping to be above 1500 this time, maybe even above 2000.
In this doctor's office, they have this cool machine which processes my blood & gives us data minutes later. When the phlebotomist looked at the numbers, she first mentioned a 2.8. For a second, I thought she meant my neutrophils were 2.8 (which would be 2800). I said something about that making us happy.
Then, she clarified that 2.8 was my total white blood cell count. (That number is supposed to be above 4.5.) My neutrophils were at 230. Since anything below 500 is considered life-threatening, that makes us less happy, I said.
I haven't had numbers that low since early September. Since that time, my numbers had been over 1000 for the past eight months.
The doctor passed through the room (I have an appointment w/him next week on the 30th) & said that it really wasn't too surprising and that I shouldn't worry. While I cried about 1100 last month, I didn't have it in me to worry about 200. Maybe when it is this bad, I feel there is no point wishing it were a little bit better.
The doctor asked me to give myself a shot (in the stomach) of a medicine called Neupogen which is supposed to help me create neutrophils. I have had good results w/this medication in the past (sometimes remarkably good) but haven't been able to maintain good numbers w/or w/o this medicine alone. (I hadn't taken it in over a year.)
The doctors seem to think I'm doing an alright job of making Neutrophils but that something has been "knocking them down" or attacking them. (Generally, they blame my lymphocytes, the white blood cells that are supposed to protect me against viruses.) The treatment I had almost a year ago, a treatment they give to people who have had organ transplants, was in hopes we could get this pattern of my body attacking my body to stop.
It didn't look like it had worked to me at first but then it looked like it just took a few months to work. I didn't want to take one of the medications (Cyclosporine) as I'd been told by other hematologists that it was toxic. In the hospital, they said, "It is toxic & you need it." I agreed to take it as part of the treatment (which was supposed to be a five day treatment).
I didn't know they were going to expect me to leave the hospital taking it & kept wondering when I could stop taking it. Eventually, per the request of a hematologist at UCSF, I agreed to taking it for a year. Now that I've been off it for a month & my numbers have plummeted, my hematologist is talking about possibly asking me to start taking it again. I don't know how well it will work on its own as my understanding was that it was part of a broader treatment but I guess we'll see.
So, I'm fine, really, I think, but I am back to having to decide if I will be a guinea pig for them again. Not expecting you to understand (as the doctors don't really seem to understand). Just sharing what I think I understand them to be saying. This isn't new but apparently it isn't over either. Oh well, I'll just climb this dune & see what we see when I get to the top of it.
As always, thanks for caring.
Thursday, June 16, 2011
It didn't make it here until after he'd turned one).
I didn't think I was interested. I didn't think I cared. But, at some point, when Sam was three & we were living in St. Louis, I decided to find out what all the hubbub was about & read Harry Potter & the Sorcerer's Stone (I).
The movie by the same name was released just before Thanksgiving when Sam was four. Somehow, he & I ended up seeing it at the movie theater with my parents. I think we all thought it was a kids' movie. While there were very scary parts, because I had read the book, I could assure Sam, "They can't kill Harry Potter," and we made it through.
The second movie, The Chamber of Secrets (II), came out a year later (when we were living in Iowa). I'd spent that year as a single mom, at a new job (the biggest job of my advertising career) & hadn't gotten around to reading the second book.
One Friday night, after a long week of school & work (Sam was in kinder-
garten now), I took him to see the movie. This is the one where they introduce the giant spiders.
It was a bit much. Sam was covering his eyes & saying, "I want to go home."
When it looked like Harry was about to be killed by a basilisk (&, because I had not read this book, I could no longer reassure him), we left.
The next morning, I was telling a friend about how we'd had to leave before the end of the movie. Sam said he wanted to try again. I figured if he was up for it it would be better to make it through than to leave it hanging over our heads. We took our neighbor, Sam's friend, a little boy named Jon (who is a year younger than Sam) with us. This time, in the daytime, we made it through. Thankfully, so did Harry.
Previously, Sam had seen Lord of the Rings - The Fellowship of the Ring (albeit on a small screen, in small doses, in the daytime, at home). And, a month later, he made it through Lord of the Rings - The Twin Towers.
When I wondered out loud about why, my brother hypo-
thesized that the "good guys" & "bad guys" were more clearly defined in LOTR & that maybe kids in peril, kids (Tom Riddle) out to get other kids was what was upsetting to Sam about the Chamber of Secrets.
While we were waiting for the next movie to come out, our friend, Janice introduced us to the audio books narrated by Jim Dale. We started listening to them & over the course of the next several years, we listened to The Prisoner of Azkaban, The Goblet of Fire, Order of the Phoenix, Half-Blood Prince & Deathly Hallows together. We enjoyed them a lot.
Sam was almost seven years old when the third movie was released. (I'm not sure how many of the audio books we'd made it through at that point.)
We'd moved to Chicago & were a family with Cameron by then. The three of us went together to see The Prisoner of Azkaban (III). We were introduced to Sirius Black in this movie. I remember us enjoying it very much.
Sam was eight when The Goblet of Fire (IV) movie was released. The three of us must have seen this one in Chicago too. I didn't remember much about it off the top of my head but see it is the one with where they have the Triwizard Tournament.
It is also the one in which Cedric Diggory is killed & Harry & Voldemort face-off in a grave-
The release of The Order of the Phoenix (V) lined up nicely with Sam's 10th birthday. We'd lived in California for about a year at the time. We incorporated a viewing of the movie into our plans for his birthday party.
Harry & his friends start Dumbledore's Army & fly on thestrals to a fight at the Ministry in this one.
The Half-Blood Prince movie (VI) came out almost exactly on Sam's 12th birthday. However, we were at a family reunion in NW Washington at the time. We waited to watch the movie until we returned home so we could watch it with Cam. (He'd had to leave the reunion before us.)
Because we knew the story, we kept telling Cam, "You won't believe what happens in this one." (We celebrated Sam's birthday a few weeks later.)
The next year, between our trip to the Midwest & a series of visits by family & friends, Sam managed to turn 13 w/o a party. So, when The Deathly Hallows - Part I (Movie VII) came out, it seemed like the perfect opportunity to have an unbirthday party.
This year, "the epic conclusion of the world-
menon," Deathly Hallows -Part II, (Movie IIIV) is being released the day before Sam fourteenth birthday. So, we're building it into a party again.
It has been neat watching Sam come of age alongside this coming of age story.
We're excited to watch the finale.
(Although, I'm even more excited to see what the focus of Sam's birthday party will be next year.)
Thursday, June 09, 2011
If I had a Boat - "If I had a boat, I'd go out on the ocean. If I had a pony, I'd ride him on my boat. And we could all together, go out on the ocean. Me upon my pony on my boat."
Bears - "So, meet a bear & take him on out to lunch w/you, even though your friends may stop & stare... It just don't come not better than a bear."
LA County - "And the lights of LA County, looked like diamonds in the sky."
Fiona Live (Clip) - "Way down yonder, on the bayou, there lives a little girl-o..." "Ehhhh! "Oh you better not cross her. You try to boss her. Then, you better duck mister. Here come a cup & saucer." "Eh-ee-ehh!"
She's Already Made Up Her Mind - "She said something about going home. She said something about needing to spend some time alone. And she wondered out loud what it was she had to find. But she'd already made up her mind."
"There is nothing so deep as the ocean. And there is nothing so high as the sky. And there's nothing unwavering as a woman when she's already made up her mind."
La to the Left - "My mother was good to me. How in else could she be?"
Old Friend - "Put your head down on my pillow & put your hand on me & hold on. Hold on."
Flyswatter/Ice Water - "With you here to guide me, I cannot fail."
Just the Morning - "There's nothing here to be afraid of, it's just the morning."
Private Conversation (Clip) - "That man she left behind her was 2000 miles away..." "Ehhhh!"
Smile - "Smile, though your heart is aching. Smile, even though it's breaking. When there are clouds in the sky. You'll get by."
North Dakota - "If you love me, say, 'I love you.'" "If you love me, take my hand."
I love many of his other songs too but these are some of my favorites. Maybe, after tonight, I"ll have some new favorites.
Sunday, May 29, 2011
Last Sunday, after what I thought had been a long day, I returned home from taking a walk with a friend to hear that a tornado had struck somewhere in Missouri.
This was concerning as I have family & friends in Missouri. I asked Cameron, which town(s) had been hit. When he said, Joplin, Missouri I was stunned into silence.
Joplin is less than 30 miles from Columbus, Kansas, the town that was my home from the age of 5 to 17. Since my town was very small, we would go to Joplin often, whenever we wanted to see a movie or hang out at the mall.
While my family moved away from the area over 20 years ago, through Facebook, I stay in touch with several friends from the area.
From a distance, I am sure it is impossible for us to comprehend what they have been dealing with but I thought I'd share some of what I've learned, some of what has made this disaster personal.
Thankfully, the people I know best seem to have been spared; however, many of them know people who have been personally devastated.
My friends experienced scary storms, during at least one, they were pounded by baseball-sized hail. After the tornado hit Joplin, several of my friends were incredibly worried about their loved ones who were in harm's way then out-of-touch &/or missing for a time.
Many of the people I care about have people close to them whose homes were destroyed. My friend, Susan's sister's family's home is gone. The father of our high school class president was also destroyed. Meredith's friend lost her home. My friend, Laura's friend's mom lost her house.
My friend, Heather said her brother-in-law's house & the high school she attended have been destroyed. My friend, Chris saw the neighborhood where his grandparents used to live destroyed. (Last I knew, they hadn't heard from the neighbors.)
My friend, Holly's sister's family's house was damaged but is still standing. Romel stood in line to get a permit to fix the damage to his property. My friend, Michelle thought her husband had lost his job when one semi truck was thrown onto the truck he normally drives. (Thankfully, the company has been able to operate out of a different location.)
As devastating as this loss of property has been, the people I know were all relieved to hear their loved ones had survived. Others were not so fortunate.
Some people I know know people who have lost loved ones. My friend, Lori's son's teacher's father was killed. My friend, Stephanie's friend's 16-year-old stepdaughter died during the storm. I can't imagine the heartbreak they must be feeling.
I think I read this was the deadliest tornado in more than 50 years. I know I read about people at the local hospital whose IVs were torn from their arms during the storm & about how people in St. John's hospital’s emergency room, waiting for treatment, were pulled through hospital windows. Unimaginable.
However, there is light in the darkness. I'm incredibly proud of my friends who have been working hard to make things better. My friend, Susan, a nurse who works at Mercy hospital in Joplin (but who was not working at the time) has been providing medical care & treatment to patients in the basement of Memorial Hall (a place I used to go to to see concerts) which has been turned into a remote medical triage center.
My friend, Aron, who is home on leave from active military service, helped distribute truckloads full of water. My friend, Derek, a former Cherokee County sheriff pulled out his old uniform to assist with the rescues. My friend, Jason returned to service with the Joplin Fire Department's Search & Rescue Team.
My friend, Hilary has been trying to find a place for her mom to continue getting her dialysis treatments. My friend, Hollie who was recently elected to the Columbus City Council has been monitoring subsequent storms & responding to the understandably jittery reactions.
I'm not sure what I can do from here other than let them know I care & make a donation to the American Red Cross to support the efforts of those on the ground in Joplin. I can share the stories I've heard and ask you to please join me in offering support, relief & care to those who have been hit so hard & in offering thanks to those who are there making a difference.
Feel free to share these stories with others you think would want to help too (http://marymaddux.blogspot.com/2011/05/this-ones-personal.html). Thanks so much.