Uncle Joe - My Dad's Brother

Joseph Vernon Powell was – and still is - my brother. We shared a special relationship. While he was 16 months older than me, we both, from time to time, were called upon to help – to protect each other. When I was hurt, he felt my pain. When he was being teased at the playground at Grandview Elementary school because of his birthmark, I cried, but was too little or too afraid of the wrath of those evil bullies to do anything to ease – to end his pain.

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 - Obituary

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 (8^th 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.

In lieu of flowers, please make donations to the Wounded Warrior Project, donorservices@woundedwarriorproject.org – or call 877-832-6997.

Master Sergeant Joseph Vernon Powell - Remembered

"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:

“We spent a lot of time together at the traveling walls. He was always there. We would spend all day together. I gave him a hat. He gave me a hat.” ~ Danny

"He was a patient man. He understood. He was a great help. He was a man who wanted to help you. He would do his best to help. He will be deeply missed." ~ Rafelio

“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

“Thank you for all you have done for us.” ~ Ron

“He was always there to help you understand what a person needed in help.” ~ Samuel

“Rest in Peace. You’re home now.” ~ Ron

“Joe, you were a great person. I will never, ever - forget you." ~ Manuel

“We will miss you, Joe, but we have wonderful memories we will carry with us.” ~ Clarence

"I never saw him as overbearing. He had a lot of patience with people. He would bend over backwards for vets. He was not judgmental." ~ Doug

“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 experienced what the people went through and what they felt." ~ Roy

"I though a lot of Joe because he had been where we had been. Those top sergeants kept us alive (in Vietnam) and I felt that Joe did that here (Vet Center)." ~ David

“He always welcomed me to the Vet Center. He would always smile at me.”~ Raul

"When I first saw Joe, he was very committed to helping the vets. He said to me, 'Don't ever, ever give up.' 

I am very appreciative for what he did for me." ~ Ruben

"The first time I saw him, he patted me on my shoulder and told me that I had done a good job dealing with my PTSD. That made me come back. He encouraged me." ~ Jose

"His presence was soothing. He was committed to one thing above all--the veteran. We have good memories of him." ~ Roman

"He would disregard his own pain to help us." ~ Lawrence

"Joe - He was one of us." ~ Tony

"Our sincere condolences to the Powell family, you, and the veterans of the Austin Vet Center.   Please inform us of the services and wishes of the family.   All are in our prayers.  Since the family is here in the Killeen area please let us know if there is anything that we can do to assist them."  ~ Lori A. Spencer, Office Manager, Kelleen Heights Vet Center. 

Comments provided from various Vets’ Centers by those who served with and those served by Master Sergeant Joseph Vernon Powell.

Bone Marrow Transplant?

So, the Stanford guy seems to have said I will probably need a bone marrow transplant.  I'm still trying to wrap my head around the idea.  It still seems pretty unreal & I guess it is unreal still, as they don't even have the report from my last bone marrow biopsy, yet.

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.

Aplastic Anemia?

About noon, on Sunday, we got this treat from my hematologist, "The bone marrow biopsy appears to show Aplastic Anemia, but the results are not final."

We decided, rather than freaking out about it, we'd follow his directive to, "Have a great Halloween!"

Yesterday, 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.

 

 

 

Convoluted Mess

It has gotten to where I can't even keep the story straight anymore & it is my story. The doctors aren't keeping it straight, so please don't think I have any expectation that you should.

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."

I wrote,
Today, the hematologist said, "It is time for another bone marrow biopsy."
That'll be #3.
Poop.

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.

Love,
Mary

Leaving Michael

I left the hospital, around noon, on Friday, 7/29, shortly after hearing from Michael's step-father that the neurologist had told them my friend no longer had brain activity.

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.

Michael the Child Advocate

I had the privilege of meeting my dear friend, Michael Scribner, in the fall of 2007. Michael had just graduated from an extensive 40 hour training program, and taken an oath before a judge who swore him in as a court appointed advocate for children in the foster care system, a CASA. I was a new case supervisor at San Francisco CASA (Court Appointed Special Advocates).

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.

These kids did not embrace everyone. The little girl would climb a tree at school and refuse to come down until the fire department came but they would RUN to Michael.

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.

And this, his volun-

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.

Losing Michael

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...
8/1/11 @ 8:16pm - "All that I know is I'm breathing. All I can do is keep breathing. All we can do is keep breathing..."
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

They want me to try taking Cyclosporine again.

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.