A different Halloween

 Last night as we sat quietly watching some Halloween themed sitcom Steve said, "we don't even have a pumpkin."  He's right. We don't. We have an enormous amount of Halloween decorations. There are tons of spiders, bats, and skeletons.  Those boxes never made it out of the basement this year.

We didn't  consciously decide not to decorate this year. It just happened. Neither of us could get in the mood. Halloween was Maggie's Christmas and Birthday rolled into one. Without her the fun of this day is gone for us.

Steve would have spent the last few weeks laboring over her elaborate costume. People knew something big was coming and they would try to find out the costume ahead of time or ask for sneak peaks; but we always waited until it was complete and then publish it.The Big Reveal would be right about now (7am)

Who knows what elaborate scheme we would have concocted. It doesn't matter, whatever it was Maggie would have been delighted. She found delight in everything, she had a joie de vivre that was second to none. But she knew she owned Halloween. and she took great delight in that too.

It's the delight we miss most of all.



Here's the fashion show of Halloween's gone by 2005-2013 (skipped 2010 because she was in the hospital)

It is what it is, but it's stupid.

The system is cold and unfeeling. I suppose that's no surprise. It's not human; it's incapable of feeling. How is it then that this inhumanity can cause exasperation, frustration and even sadness in a real human?

Today when I arrived home I came in through the garage so I could get the mail. The mail slot is in the garage door and it goes into an old beer box that Steve taped to the inside of the door. Generally it works perfectly, but when there is a ton of mail (as there was today) it tends to hit the top of the box instead of dropping in and as soon as the door goes up, the mail goes everywhere. Because there is an election next week everyone is inundated with campaign crap which caused everything to go flying. I had my purse and a bag of groceries in my hand so I left the junk on the floor of the garage and picked up only what mattered, like the electric bill and what I thought was a check I've been waiting for. When I put everything down upstairs and looked closer I realized it wasn't a check at all. It was a Jury Summons for Maggie.

Ouch ...On so many levels.

Amazingly, though, as I looked at the form I noted a box that excuses a prospective juror if they are deceased.

So we've got that going for us.

There are many other things like this that happen all the time. The worst one was shortly after Maggie passed away. I told someone this story the other day and realized I never shared it.

Before Maggie passed away I initiated the process for IHSS (In Home Support Services). It's a California program that is designed to help disabled people stay in their homes.  The IHSS worker would not do nursing care, but could do thing like shop, laundry, cleaning, etc. There was really no question that Maggie would be qualified for it, but I never went through the application process which is mandatory. I filled out the application and arranged for the required home visit. The home visit was scheduled for February 18 (I remember because it's my dad's birthday) That was Tuesday after Presidents Day. Maggie died on Saturday night February 15.

As I wandered around the house in the middle of the night on Sunday or Monday unable to sleep. I suddenly remembered that woman was coming over. It was 2AM, but I figured I would leave a voice mail on her office phone hopefully heading her off before she came over on Tuesday. It worked. She called me Tuesday morning and thanked me for calling her and expressed her condolences. She was very nice and said all the right things. I was happy it was taken care of without having to deal with anyone in person. Efficient and relatively painless.

Of course that wasn't the end of it.  There is a process and the government needs to have the right paper in the right file within the required amount of time. Even though the human was kind and caring, she had to complete the dehumanizing process.

A week or so later I received an official State of California/County of San Francisco letter advising that the application for IHSS was officially DENIED because the determination was that Mary Margaret did not need the services.  

While I couldn't really argue with the conclusion,  I certainly could have done without the letter.

Can't wait to see what's next.

Always October

Always October.

That's the theme for the Major League Baseball playoffs and World Series. It's pretty good, too. The level of play is definitely higher in October as teams are fighting off elimination and hoping for the World Series. And this year my Giants are there, so that's cool. I know the rest of the country is rooting for Kansas City because the Giants have won twice in the last five years. If I wasn't a Giants fan I would be doing the same thing. But I went from 1962 until 1989 between World Series, and they lost BOTH of those, as they did again in 2002. So even if the rest of the country is tired of the Giants winning, I figure they are just making up for a 27 year drought which included my entire childhood.

Besides, it feels good to feel good about something, even - or especially - baseball.

I think this month has been particularly tough. It's October. It's Halloween time. This time last year, and every year for the past decade Maggie had elaborate Halloween costumes. Maggie and I were the idea people and Steve made it happen. She would delight in whatever scheme we came up with and loved the trial and error of making the costume and wheelchair design work. It had to work in such a way that she could still use her talker, the wheelchair would fit through doorways and the bus driver could attach the straps to keep her safe. It was not an easy task, but Dad always came through. He would grumble and stay up late and make something so great it always surpassed our expectations.
Last year's covered wagon was probably the most elaborate.

 We would be heavily into that by now, but instead we try to ignore the upcoming holiday. Oh we will dole out candy and play nice; by the time the trick or treating started Maggie was done. Her fun was preparing, and then getting to unveil her great costume on the bus and at school. She was so excited by the time she came home, she was generally asleep before the first candy seeker arrived.  

Adding to our Halloween heartache is the loss of Tyre, Maggie's friend that I wrote about last week. Knowing I will be spending a day next week at his funeral service makes a tough week even tougher. There is a crowd funding site set up to help his family deal with the expenses involved. If anyone is inclined to donate, here's the link. http://www.youcaring.com/memorial-fundraiser/tyre-duffin-a-celebration-of-life/248753#.VEKC9Oxuxq4.facebook   I already shared it on facebook, but I don't think you have to be on facebook to contribute.

So with all that, I am going to hope the Giants win the world series and let me focus on the good parts of October. Maggie loved baseball. Well that's not true. She loved watching us love baseball. She loved hanging out with Tim while he watched and gave her the play by play in the big green chair She loved our occasional outings to the ball park with either family or her group of friends. Tha girl had fun.

Perhaps the Giants will win and keep me distracted for another week. Perhaps not. Either way, November will come. And I will be glad when its not Always October anymore.

Twenty five years later

October 17. That's just one of those days you remember. It was 25 years ago today that the Loma Prieta earthquake hit killing 60 people from Santa Cruz to Oakland. As sad as that is, it is remarkable that it didn't kill 6000. Part of the reason it wasn't worse, in my opinion, is that the San Francisco Giants and the Oakland A's were just about to start Game 3 of the World Series and many people in the Bay Area were already at the game or in front of their television sets instead of on the collapsing Bay Bridge or Freeways.

The World Series was billed as the Battle of the Bay, but the series wasn't the big battle that week.

Steve and I were at the World Series. We had pretty good seats in section 10 of the lower deck of Candlestick Park, right between home plate and third base, under the overhang. The quake started and my first thought was that people were stamping their feet, but then I remembered I wasn't in bleachers at a high school game. The rolling started getting worse and we all knew.

For some reason I fixed my eyes on a cameraman who was in a temporary cage attached to the upper deck. It was in place just to accommodate additional cameras for the Series. That guy really got a ride. I watched him hold on to the sides of that cage with all his might, saw the fear in his eyes and wondered if he would fall.  He didn't.

The shaking stopped and there was a roar in the crowd. Atlee Hammaker, a pitcher for the Giants said, "That was the tide turning." (the Giants were down 2 games to none) For a few minutes there was a weird sort of jubilation, and then reality set in. I begged Steve to move out from under the overhang. He dismissed my concerns saying, "That's reinforced steel and concrete, it's not going anywhere."  Just then the television came back on and this picture was showing

I pointed to it and said, "Well, what's THAT made out of?" We moved. 

For a while everyone waited thinking for some reason that the "game would go on."  It did not and eventually we made our way to the parking lot.  I remember seeing people on car phones (pre cell phone days) but no one could get a line.  We found our car and started the long long trek home. 

Generally we could get back from Candlestick in about 20 minutes. Not that day. It took 90 minutes just to get out of the parking lot and another 90 to get home. I was freaking out because Eddie was 18 months old and in the care of my friend Anna (who rushed across town to get him after work, beating emergency vehicles, I believe). I couldn't reach her and had no idea if they were OK. Also I was about 6 weeks pregnant with Tim, so my emotional state was volatile.

As we sat in the car, we could see the smoke from the fire in the Marina District. It was a perfect day, weather wise, and the beauty of the Bay was haunting knowing the devastation that had happened. We listened to the disaster reporting on the radio and I marvelled that they were talking about US and we were fine. ("Us" being San Franciscans).  They kept saying "60,000 people at Candlestick Park and no one panicked," to which Steve would respond, "except Sally."  Hilarious.

We worked our way toward the Richmond District, which had not been mentioned once in the disaster reporting. I decided that was good news, there was nothing to report, but then I wondered if it was because the entire neighborhood was in the ocean and there was no one to report it. Not rational, I admit, but the fear was there. As we approached Anna's house I was quiet, not wanting to spill my irrational fears

The power was out everywhere, which is always unsettling. We were about three blocks away, crossing Geary Street when I saw the Blarney Stone, an Irish Bar then on 21st and Geary (now down the street) There were people crowded into the place lit only by candles. I decided that was a good sign. If people were out drinking, things couldn't be that bad.

We retrieved Eddie who was fine but miffed that Ann had taken the batteries out of his toy to put in her flashlight. (Everyone had to sacrifice.) He could talk some and told us about the "Big Shakes"

 When we arrived home we found my bother in law Jim on the front steps. He couldn't get home to Oakland and decided to walk to our house from downtown. He said he knew our house would be okay because Steve had bolted it to the foundation a month or so earlier. The house was fine. The fish tank sloshed over and one coffee cup fell off a rack, but we were fine.  Steve and Jim, knowing the power was out, did the logical thing; they ate the ice cream before it melted and drink the beer before it got warm. I went upstairs with Eddie and put on my Walkman radio to listen to the news.  

The lights came back on the next evening and we could see the horrible pictures on the television. We know how lucky we were.

 Eventually the Series resumed and we went back to the same seats. It seemed important to go back and show the world that we were still here and OK. The crowd sang "San Francisco" and everyone was into that. We sat next to the same guy as we had when the earthquake hit and in the playoffs before that, but they weren't as lucky as we were. The woman didn't come back as she lost everything in her apartment in the Marina. It was unbelievable. The crowd was much more subdued and the Giants lost in 4 straight. 

Freeways were rebuilt, bridges were fixed, houses were rebuilt, but everything changed. Before that I though earthquakes were just part of  San Francisco's Charm.  I don't think that anymore.

It would be fine with me if the next "big one" could hold off for another 75 years or so.

Lady in waiting is waiting

Today marks 8 months since we lost Maggie. Still it feels like  moment ago.

We've done a lot in 8 months. planned and took a trip to London and Ireland, spent four days in Boston, went to San Diego for a graduation, sold the van, cleaned out most of Maggie's things, cleaned out and sold my father in law's house (OK that was mostly Steve and his siblings, not me) went to work, gave talks, worked on a paper about services for the disabled, planned and attended my high school reunion, raised money for the hospital, spent time with friends and family, got up every morning, survived, and so much more.  In short, I've kept myself busy.

 Being busy helps; but a lot of it feels very artificial.

I need to figure out what's next. Not in the busy bee fashion I have been doing things, but in a thoughtful, considered plan for the future. I do have some thing to offer - mad skills -  I'm just not sure where or how to market them.

My husband wants me to feel fulfilled and happy and encourages me to go back to practicing law full time, I told him that's not for me, but never really articulated why -- mostly because I didn't know why. He assumes I don't think I can get back in to the swing but that's not it. I admit that going to work in a law firm at my age is not very enticing, but it's not because I don't think I can do it, I know I can, The question is what good does that do anyone?

We are approaching this from completely different angles. He thinks I'm selling myself short by not considering that, but I told him today that I think I am selling myself and Maggie short if I do consider that.

 I am only now figuring some of this out, and I'm still having trouble articulating it. But I know this: I can't go back to the way things were before Maggie was in our lives. I am not the same person.  More importantly, though, the skills that set me apart are not as a lawyer, they are the things I learned and did in the past 20 years as a "lady in waiting" in Maggie's world.

I know how the system works, or doesn't work, in California, I know where the weak spots are and who is manipulating those.  I know there are people out there busting their tails trying to improve things for the disabled in California and there are others who impede those efforts in both overt and covert, conscious and unconscious ways. I know more awareness of all of this will help at every level, but I don't want to be a shrill voice that is lost in the wind. I want to be part of something that can make a change.

I know things can be better and I want to help make them so. I want to do that for Maggie and I want to do that for me and I want to do that for the disabled people of California, because they are my peeps.

I want the last 20 years to count.

So this lady in waiting is waiting for an opportunity.

Tyre

I have so so many things to post about.
I've ever really talked about our trip.
I have to follow up on the talk at Mission.
There are so may things....

But not today.

Today is reserved for Tyre, who was Maggie's friend, boyfriend, prom date, nemeses, classmate, cohort and so much more. He passed away last night and I am so very sad.

 I said in an email today "He was very much like Maggie - they were the two "smart" kids. He was a couple of years older than Maggie, so there were a few years they weren't together (he would have moved on to middle school or high school before her) and neither did as well without the other. They were smart and they pushed each other to get better and better on their talkers."

I talked to several people today as the word of his passing spread throughout his world. Most of the professionals in Maggie's life also worked with Tyre. When I spoke with Nurse Janice she said, "well, those two are together again. Maybe this time Maggie won't play hard to get." That really made me smile to think about.  Tyre had personality galore and could be quite charming. He worked his charms on Maggie. He was crazy about her and she was about him, but she would flirt with other boys to throw Tyre off his game.  It was hilarious to watch. 

It was hard not to be charmed by Tyre. He was expressive and happy and always dressed to the nines. Maggie and Tyre were supposed to go to the prom together one year, but Tyre was in the hospital and couldn't go. We made a point to go by the hospital first so we could take pictures. Tyre was all dressed up to match Maggie's dress and even had flowers. Check out the look he's giving her in this shot. I learned later that he thought Maggie was there to take him out of the hospital and was very upset when we left without him... 

It is mind-boggling to me that Maggie and Tyre are both gone in such close proximity. The two of them exuded so much energy and joy, I know the world is a lot less joyful now. 

I will miss Tyre and I will remember him.  He  made me feel good every time I saw him.  He made everyone feel good. But I don't feel good today.

Safe travels Tyre.

Back to school

Computer issues are resolved. Finally. I've only owned this computer for a year and it was very messed up. I a relieved that I don't have to replace it alrady.

 So, just when you thought it was safe to go back on the internet, I'm back.....

This afternoon I am going to Mission High, Maggie's old school. (Pictured above) You may or may not know that October is Disability Awareness month and "Teacher Joe" (Maggie's former teacher)  asked if I would consider addressing the faculty about my life as Maggie's advocate or about disabilities in general. The request kind of surprised me, but I was flattered at the same time. Mission High meant everything to Maggie and I am pleased to contribute in anyway I can.

Joe told me the theme for this meeting is Access, Equity and Social Justice. He thought of me because that's what I always sought for with Maggie. I said, well, I suppose I did, but I never thought about it that way. When you're in the middle of  dogfight, you don't have time to analyze what you are doing, you have to keep fighting.

Only now, with the benefit of hindsight -- and the highfalutin labels attached by Joe -- do I realize that is exactly what I was doing.

Sounds so Gloria Steinem-ish, doesn't it.

I will report back.