Friday, October 2, 2015

Telling the Neighbors

We have lived in this house since 1987, which is a very long time. We know our neighbors, some better than others,  and have either nice conversations or pleasant encounters depending on the relationship. I can honestly say we don't have any bad blood with anyone.

Many of these people I've know for many many years, other I've seen but don't know very well at all. It's so weird to have to tell them about Maggie. It goes without saying that Maggie was pretty well known, or at least well recognized,  in the neighborhood. If the wheelchair wasn't enough, Maggie was outside for several minutes each morning as we waited for the school bus and every afternoon when she arrived home. This day in age, that's rather unusual. You barely see most kids. Folks would wave at her and she would wave back when I prompted her.

It's a strange responsibility to tell neighbors you see but don't really know. One neighbor from the next block was walking by some months ago and said, "I haven't seen your daughter lately." When I told him she had passed away I though he was going to cry. I wanted to hug him for asking and for his sweet reaction too.  I avoided telling a woman I know up the street when she walked by asking how everything was because her little kids were with her. I didn't want to upset them and figure that is news for a parent to tell (or not tell)  a kid. Later that day I went up and knocked on her door to tell her and her husband.  Let me tell you, there is just no good way to do that.  

Recently I have had encounters with two neighbors I don't know very well. Both are older than I by 10 and probably 20 years One lives up the street and is something of a socialite. The other lives a couple of blocks away and is the dog lady of the 'hood. The socialite  has always been very pleasant to me, but I don't really know her very well. She has some sort of non profit that purportedly helps the disabled, but I've never really been able to suss out exactly what service they do.  Because of that she loved to talk to me about Maggie. Many of her notions of  and terminology about dealing with the disabled are terribly out of date, but her heart is definitely in the right place. The dog lady is something of a know it all, but also very pleasant. Everything relates to dogs. Everything. And you can be pretty sure that whatever you are doing with your dog isn't quite right, but she's happy to instruct you how to do it better. After months and months of quickly waving and ducking inside I had to tell them about Maggie.

I ran into the dog lady at the corner market a couple of months ago and told her Maggie had passed away. Of course she was very kind, but then said she knew how I felt because she had to put her dog down. I just walked away. She was completely clueless that maybe her comments were inappropriate, and I'm sure she completely equates the two situations. I don't. I experienced both situations in the space of a few short months and I can assure you they are very very different. I've run into her again at the park now and then and she has decided I will never feel better - ever, as long as I live and tells me that. Now I do my best to avoid her.

The socialite was a different story. She was walking by the house, which may be a first in the 28 years I've lived here. I've never seen her outside her car unless it's right in front of her own house. I decided it was time to tell her about Maggie. She was lovely, though she used a few of her out dated expressions, I took no offense. She's very sweet, but it's just too hard to take.

A day or so later I found a note in my mailbox that had a bow around it. I though we were invited to a wedding or something. It was just a lovely handwritten note offering her condolences and her insights into losing a loved one, especially a person with special needs (not her words). It was really quite extraordinary. I realized though that had she said those things to me in person it would have been really strange and at the same time if  the dog woman left a note stating her observations it probably would have been quite lovely. Sometimes the medium can make or break a message.

I don't have a pithy ending for you. I'm just relaying another strange layer of this world I live in. As you get farther out in your circle, it becomes a different kind of strange. The inner circle of family and friends knows and tells the next circle of people for you and that continues as long as there are people we know in common . But then there are the outliers, the people who aren't really our friends, but acquaintances. If we don't tell them they won't know and Maggie was a tangential part of their lives too.

It's just so strange.  And it really doesn't get easier.

Monday, September 28, 2015


For years I have heard people talk about "triggers" or warn someone that a certain article or discussion might have triggers for some people. I knew what it was, and respected the concept, but couldn't really relate. I didn't have any that I personally recognized. Perhaps that is because I was lucky and had never really experienced such a profound trauma that could be triggered. 
That's not true anymore. 
For those of you who may be unclear on the concept of triggers, I took this definition from
trigger is something that sets off a memory tape or flashback transporting the person back to the event of her/his original trauma.Triggers are very personal; different things trigger different people. The survivor may begin to avoid situations and stimuli that she/he thinks triggered the flashback. She/he will react to this flashback, trigger with an emotional intensity similar to that at the time of the trauma. A person’s triggers are activated through one or more of the five senses: sight, sound, touch, smell and taste.
While it doesn't always happen, it has happened often enough that I have to acknowledge that I believe I now have an official trigger bringing me back to last February. It happens only when I'm alone in the car and have to pull over for an ambulance with its siren going.

The other day I was driving home and heard a siren but didn't know where it was. It appeared several blocks in front of me as it came over a hill. I really didn't need to stop, but I always do. There was a car double parked and the ambulance was going to have to go around it and I figured with my luck I would be right in the way at the moment he needed to come into my lane. I had already stopped and was thinking about this and doing the rough calculations in my head (which if you know me is a hilarious concept). This thought process was more to justify my decision to be ultra cautious and pull over.

As everyone likely does, I  wonder who's in that ambulance and what happened and hope it will all be OK. I don't really feel sad or scared or anything except passing concern and good citizenship for getting out of the way.

 When the ambulance passed me I realized I was crying. And that's not the first time that has happened.  Perhaps that is due to the fact that I know first hand that sometimes it isn't OK for whoever is in that ambulance.

When the realization hits  I am suddenly sitting in that ambulance early on Valentine's Day 2014 with Maggie in the back heading for the hospital, knowing in my heart that this is the end. So I sit there on the side of the road for a few minutes as the other citizens move on. One guy gave me a strange look as he passed me like "Move it sister, show's over."  I smiled at his ignorance of my personal hell.
The feeling doesn't last long. I don't weep for hours, In fact generally the realization, the memory and the reaction are simultaneous and then it's over. I never feel it coming. It just happens.

Who knows if it will always happen - in fact I'm not sure it always does. Obviously I can't avoid these situations and they don't happen so frequently that it's disruptive. It's just something else out there in the world that I cannot control. I have decided to simply embrace it.

Sure it makes me sad for a few minutes, but that almost always "triggers" something about her that makes me laugh or smile. And there are a of more of those memories than the sad ones.

Tuesday, September 22, 2015

City mouse, country mouse

I am a city girl. I like the energy of the City and try to take advantage of the amenities it has to offer. I spend part of every day in Golden Gate Park or the Presidio. I hit museums all the time and have season tickets to the theater. I love hearing people speak so many different languages when I'm out and about and enjoy the diversity here. I follow the San Francisco Giants religiously - even in odd years when they don't win the World Series. Football is less my thing and the 49ers left town for Santa Clara, but I still pay attention.  As my life turned out, being close to excellent medical care was another huge perk. I have no doubt that Maggie lived as long and as well as she did because of the easy access to excellent care.

I don't live in a bubble, though. There are negative things about living in the City too. Crime, Parking tickets. Prices. Crowds  But we take the good with the bad and practice vigilance and tolerance and patience. Sometimes it works, sometimes it doesn't,

One thing we generally don't have to worry about in San Francisco is wildfire. (Not so true in Oakland, however.) Sure there are fires and people get displaced all the time because of them, but they are not wildfires that burn down entire towns.*

Though we are almost all city based, last week my family had to sweat through the terrible Valley Fire which has burned nearly 600 homes in Lake County. My sister Mary, who was probably the most City of all of us, moved to Lake county many years ago. She became a country girl. Well, sort of.

ok, that's not really them

She and her husband Channing have a beautiful house with a sweeping view. I took this from their living room when I visited in March

That view was very different last Saturday. This picture was also from their living room, taken by my brother in law as he was evacuating. He said just 10 minutes earlier the sky was clear and there was no evidence of fire, but the wind was roaring and that fire just appeared from over the hill jut as a fire truck came up the driveway and told him to get out. 

This is from the bottom of their driveway.

That house was right in the path of the fire.  Mary was not at home, she was here in the City attending a Giants game when Channing called to tell her he was being evacuated. This was the third wildfire to threaten them this summer, but the first that actually required evacuation. Channing was without transportation as his truck was being repaired, so he met some neighbors and left for Lower Lake to the North. Then they were evacuated from there as well and he went to another friend's house to the Northeast.

The fire flattened much of Cobb and Anderson Springs and then moved through the town of Middletown just to the south of them. The picture of the "Welcome to Middletown" sign burning was hard to look at.


 News reports were sketchy and we had no way of knowing if their house survived. We kept telling each other Mary and Channing were safe, which was the most important thing. Of course they were also separated by the fire so each had to fret and worry without the support of the other.

This went on for days. We listened to reports and knew the wind patterns. Every afternoon was a new concern. We knew the fire was in their development, but it is a huge place and it seemed to still be south of them. Mary stayed with my sister Ellen for a couple of days and with another friend for a couple of more. She went to work - and three of her co workers were in a similar position of not knowing. It was stressful and frightening.

Of course we kept saying it's only "stuff" and it doesn't matter. That's only partly true. Of course it's only stuff.  But it does matter. Of course lives matter more, but losing everything you own along with your house really does matter.  

Thousands of fire fighters were on the job and the fire was 5%, then 10% then 30% contained, but roads were closed and we had no idea about her house. I'm sure we were driving Mary crazy with our phone calls and texts, but we all felt so powerless and wanted to help.

The fire stated Saturday evening and finally on Thursday - five long days later -  my sister Ellen provided the information we needed. The father of a friend of hers was able to get into the area and sent a video of Mary and Channing's house still standing and safe from the fire. Ellen texted it to all of us. I was on the campus of San Francisco State University when I received that text and just started to cry in front of all those fresh faced students. It was such a huge relief - and it wasn't even my house.

My sister and her husband were finally reunited and able to return to their house on Sunday - eight days after Channing evacuated with only his computer under his arm. They were without power until Monday but that didn't matter. Now they have only to throw away the bad food, get the smell out of the refrigerator and restock, which is no more than a minor annoyance.

They know how lucky they are. They can sit in their living room and go back to those sweeping views, but it might be difficult to look at for a while because the landscape has changed a lot. And they know that many of their friends and neighbors, including one of Mary's co-workers, were not as lucky.

Joni, another sister, is planning a golf tournament/fundraiser to help the victims of the fire and I will post information about that when it's ready. In the mean time please consider doing whatever you can to help the people who were so terribly affected by this fire.

We City mice have to do our part. So many people will need help.

* Ok, there was that incident where most of the City burned following the 1906 earthquake, but I like to think 111 years of progress might keep that from happening again.  Right? Right?

Tuesday, September 15, 2015

What a long strange trip it's been.

I took a trip to Seattle last week. We spent four days with Steve's friend Chris and it felt like we were gone for weeks.  It was a great break.

But traveling is still so odd for me.

 As we sat on the plane waiting to take off, I felt so strange. After years of being tethered to home, it's still really odd for me to just GO somewhere. We had maybe three weekend trips in the 20 years we had Maggie and each took incredible planning and arranging and pleading and begging. We've probably had five overnight trips in the 18 months since Maggie passed away and it only requires finding someone to watch the dog. It just doesn't feel right and I wonder if it ever will.

It's not guilt, I don't feel guilty at all. And it's certainly not gratitude. Not at all. I wish I still had those issues in my life. It's just strange to not have to worry about the things that ran my life. I can just go anywhere I want anytime I want, but I don't feel free.

I feel like I have an excellent secret that others cannot really understand. Having Maggie in my life was like traveling to an exotic land. I had experiences that I can't really explain. Those experiences shaped me and made me who I am. Now that exotic adventure is over and I'm supposed to get back to "normal," but I don't even know what that is.

Perhaps I'll figure it our, perhaps I won't.  It doesn't matter. I'm still reveling in the experience. It was a great time.

"Lately it occurs to me...what a long strange trip it's been."

And if I'm going to quote the song, we should get to listen to it.  

Friday, September 11, 2015

Terrible anniversaries

It is September 11 - a difficult day for all Americans.

We really don't need to be reminded because we can never forget. Rather than add more to the tributes out there I'm just going to re-run this from two years ago.

Maggie World: Ambassador Chris Stevens

Wednesday, September 11, 2013

Ambassador Chris Stevens

Everybody over the age of about 15 years old can tell you what they were doing 12 years ago this morning. September 11, 2001 is seared into our hearts and minds. It changed our country and it changed us.

Last year there was another September 11 attack killing 4 Americans, but this time it happened in Benghazi, not New York and Washington DC and in the skies over Pennsylvania. There are far fewer of us who remember that day as clearly as we do 2001. But I am one of them because one of those four Americans was our friend Ambassador J. Christopher Stevens.

Chris and my husband Steve had been friends for over 30 years since their days as roommates in college. This picture is from October 2011 when Chris came over for dinner as he did whenever he was in the Bay Area.

I went to a meeting that night and Steve called in the middle of the meeting saying something had happened in Benghazi. I told him not to worry because the Embassy is in Tripoli, not in Benghazi. I tried to concentrate on the meeting and then on the lecture I went to afterward. I apologized to my friend Mark for constantly checking my phone throughout the lecture, but I was desperate for information. There was nothing to know. Yet.

I came home and we watched the news. By then we knew there was one American dead, but we didn't know who it was. I searched Twitter and CNN and everything else I could get for breaking news. We rationalized that if the Ambassador were hurt or killed it would be all over the news and for some reason we took solace in that. I was sure he was OK, but before I went to bed I sent Chris an email because I knew at the very least, he had lost a member of his staff. I wished him well, told him we were worried  and asked him to check in when he had a minute. Of course, he never did.

I woke up early the next morning, maybe 5:30 or 6:00.  Steve was still asleep. I grabbed my kindle looking for news. It opened up to facebook and of course I was distracted. I saw a picture of Chris that someone posted and I smiled to myself. Chris had a facebook page but rarely if ever used it. It made me smile to see his picture there. I scrolled down and there was another picture. I didn't smile this time. The morning fog and distraction lifted and suddenly I knew why there were pictures of him.

My fears were confirmed instantly. I gasped and woke Steve who could tell that something was very  wrong. Steve is used to me waking him with some problem or another usually Maggie related. Those are graduated in terms of importance. Equipment malfunctions are one thing, but medical emergencies are another, He has learned to read my sense of urgency from his sleep and he knew this was bad. He turned to me and said "WHAT!?!?" I looked at him and said quietly, "It's Chris."

Steve was in complete disbelief and we looked at the kindle together as the television came on. We watched the reports in silence with wide eyes. We were hearing a major news story affecting all of America, and they were talking about our friend Chris. It was surreal.

We went about our day in a robotic fashion. I got Maggie off to school and Steve went to work. Within a couple of hours Steve was being interviewed by several different news outlets. It started local and went national by the end of the day. Steve said the weirdest was his interview with NBC nightly news. They asked him to come to the Moscone Center for the interview. NBC was already there covering the release of some new Iphone gadget. Everyone was all atwitter about that. Steve waited to be interviewed by the national news while listening to people go on about the newest toy. The disconnect was too much.

It took months for things to return to even a semblance of normal. Steve spoke at a memorial service at City Hall a
 couple of months after Chris died. We were seated next to the Libyan Ambassador to the United States and met Senator Feinstein and former Secretary of State George Schultz and many other dignitaries. To say these are not our normal circles would be a gross understatement. We had to listen as the death of our friend became a political football in the national election and beyond. Well meaning acquaintances could not help but share with us their political spin on what happened parroting either FOX news or MSNBC, neither of which had any credibility for us. For us it wasn't political, it was personal.

 Eventually, though, things calmed down and we could just grieve about losing Chris. But grieving wasn't enough. Steve needed to DO something.

Since then, Steve has worked with Chris' family finding ways to continue Chris' legacy of "people first" diplomacy. Steve and Austin, another of Chris's close friends, raised funds, rallied current and former fraternity brothers from Berkeley to contribute to the effort and to carry on Chris' good work.

Maybe we can't all be Ambassadors, but we can all try to understand one another a little better. Wouldn't the world be a better place if more people acted like Chris Stevens? Indeed it would.

Now a year later, we still miss Chris. We are still devastated by what happened. But we are looking forward. Programs are being put into place to continue his work with improving relations with the Middle East using student exchanges. The State Department has a program, the John Christopher Stevens Fund is developing programs and we are doing the same thing. The next Chris Stevens is out there, and these programs will help find him or her and nurture the interest and  natural talent they have to make a difference in the world.

 Today Steve and Austin were interviewed by Channel 5 again and they both had big smiles remembering Chris. It's hard not to. He was the most positive person in the world. The interview is here:

 If you want to know more about Chris I suggest you check to see posts from relatives and friends from all over the world as well as from admirers who never met him.

For Chris Stevens, Sean Smith, Glen Doherty and Tyrone Woods, killed in Benghazi last year and for the 3,000 killed in America in 2001: we honor you all. You are not forgotten.  

Tuesday, September 1, 2015

Time to take responsibility California

They say you can judge a society but how it takes care of its most vulnerable members. If that's true, the State of California falls far short.

California has enjoyed an economic resurgence after a terrible recession. It took several years, but the Great State of California is back on top where it should be. Governor Brown fixed the budget, and California in enjoying low unemployment because jobs are being created and the state is therefore collecting revenue, putting away funds for a rainy day (if it ever rains again) and fixing the infrastructure. Californians are back in the black!

All except the developmentally disabled.

The most vulnerable group of Californians are not part of this great comeback. There has been draconian cuts over the past 10 years resulting in less and less service for the disabled. One would think now that the money is back, the services would increase, but that is not the case.

Out society is increasingly fractious, There is rich vs poor, landlord vs tenant, democrat vs republican, hipsters vs just about everybody else and so on. People are dug into their positions and unwilling to give an inch which makes getting things done very difficult. .

Regardless of whether one is a "have" or a "have not", though, nearly everyone agrees that taking care of the truly disabled is the responsibility of society, and that means the government. Whether you are for big government or small government, the responsibility doesn't change. And one thing is very clear: The State of California is not living up to its responsibility.

The services for the developmentally disabled have not increased in 10 years. The Regional Centers, which are charged with being the gatekeepers of the every dwindling services, are alienating families and caregivers with the parsimonious provision of services. In their defense though (which is not a position I generally take), there has to be money to provide the services.

The governor did include a paltry 5% increase in the budget for these services, but that was cut out by the legislature so that they can decide what to do about the myriad of services, not just those for the developmentally disabled. This includes medi-cal, which is also woefully underfunded. Medi-cal effects many many more Californians than the developmentally disabled and also needs to be funded. People cannot access medical care if doctors won't take medi-cal patients because of the low reimbursement rates. There are two problems, not one and both need addressing separately. Tying these two together will undoubtedly result in yet another delay in service increases for the developmentally disabled, which is simply not fair.

People who fall under the umbrella of developmentally disabled include the Maggies of the world with cerebral palsy and those with autism, and intellectual disabilities. Some need to be cared for and it is time to do that. Families are pushed past the breaking point and need help. Many of these people can take care of themselves and live independently or with minimal support, if there are training and jobs programs to get them launched. They can live productive lives, pay taxes, raise families and contribute to the fabric of society. But none of that can happen without the government programs and those can't happen without money.

It's time to stop being shortsighted. It's time to recognize and take responsibility for an entire population of people that the state has ignored far too long. It's time to give them a chance.

Those of you who are interested can join in a demonstration in Sacramento tomorrow The legislature is just about to break session without taking care of its responsibilities but they will have to hear from this part of their constituency first.

Oh I wish Maggie were here to tell them a thing or two.....


Here's the information on the demonstration tomorrow.  A link to an article from the chronicle - but in case you don't want to click, I pasted in the entire article below.

The services system for people with developmental disabilities in California has not seen an increase in funding for over a decade.

Larry, Matthew's former service provider is now Matthew's friend and mentor
Larry, Matthew’s former service provider is now Matthew’s friend and mentor
“Guess where I am right now?” my son Matthew asked giddily in a recent phone call, “I’m on a bike ride with Larry Davis!” If you are the parent of a child with a developmental disability like me, you know how this kind of phone call affects you. (I’m tearing up right now just thinking of it.)
Matthew met Larry 5 years ago when he was in a day program in Santa Cruz–The Laurel Street Center–and Larry was his “Service Provider.” Going to the day program was a tough adjustment for Matthew, but it was his connection with Larry that made things work. Fortunately, their friendship continued after Larry left the program, and I am so grateful. Larry is one of the many people who have supported Matthew over the years, but it wasn’t until recently that I understood a major reason why agencies have a difficult time retaining such talent.
And we must do something about it.
I asked  Tom Heinz, the Executive Director of East Bay Innovations,  a private non-profit organization in Oakland that offers a variety of services to help persons with disabilities live and work independently in their communities, to explain:

Mary is a 42-year-old woman on the autism spectrum. For over 20 years she worked at a fast food restaurant bussing tables for minimum wage with no benefits. In 2008, when the restaurant changed ownership, she was abruptly laid off. She enrolled in an employment training program at Benioff Children’s Hospital in Oakland. The program, called Project SEARCH, is designed for people with developmental disabilities, and uses an internship-training model to prepare people for careers in healthcare.
Through her internship and training, the program secured Mary a position in the Materials Management department of the hospital. Mary’s autism gives her the ability to focus on fine details over long periods of time which is an essential asset in identifying expired items in the hospital store rooms. Mary now earns over $20 per hour with benefits as a hospital employee.
Unfortunately, Mary’s story is very rare. The services system for people with developmental disabilities in California has not seen an increase in funding for over a decade. The system serves approximately 280,000 people and relies on community service providers; most of whom are with non-profit organizations. Because of the lack of funding, the system is literally on the brink of collapse with many small providers closing their doors completely and larger providers severely limiting the amount and type of services they can provide.
There is a 92% unemployment rate of people with developmental disabilities of working age in CA. Two years ago, Governor Brown signed into law an Employment First Policy, directing that employment be considered first for people with developmental disabilities in their annual individual planning process. However, the service (supported employment) that would likely be utilized to help people become employed had its funding rate cut 10% in 2009 and has not been restored.
Last year Disability Rights California (formerly Protection and Advocacy, Inc.) threatened to make a formal complaint to the Federal Department of Justice that the State is in violation of the Americans with Disabilities Act and the Supreme Court Olmstead decision for not doing enough to make employment services available to people with developmental disabilities. According to a recent national report by University of Massachusetts Institute on Community Inclusion, California ranks in the bottom five States in helping people with developmental disabilities to find community employment.
This year the legislature brought the governor a budget that included a 5% increase for the developmental disabilities services system. But then the legislature agreed to take the increase out of the budget in favor of convening a “special legislative session” to find and approve a designated revenue stream to provide any increases. The special session is also dealing with MediCal rates, so DD services will likely be an afterthought, which is a tragedy. There is considerable doubt that Republicans and Democrats will agree on a funding stream to get the 2/3’s needed to create a new tax.
This year we mark the 25th Anniversary of the landmark American with Disabilities Act. The intent and vision of the act was to create a society where people with disabilities could have the ability to live, work and become part of their own communities. For people with developmental disabilities in California that vision cannot be achieved unless the governor and legislature act now to address this crisis.
Wait, there is more!
The Lanterman Coalition is calling advocates from around the state to Sacramento on Thursday, September 3rd. This will be a major action, and our last opportunity to let our voices be heard in Sacramento before the Legislature leaves town for the year on September 11. This event will include videos, speakers, a march, a rally, and self-guided legislative visits.
We need you to be there.
10am at the Crest Theater (1013 K Street)
Doors open at 9:30am

Monday, August 31, 2015


Maggie used to bring home the best gifts for me. They made them in school and she would be so so proud to give it to me.

This is one of my favorites. It's so retro.  I remember these in lots of houses when I was a kid.

I haven't even hung it up yet because I can decide where it should go. Once I get my office the way I want it, it will go in there. Seems fitting since my office is Maggie's room. There's good energy in there. 

I can't remember if this was Ms. Rosa or Mr. G's class - but it's great.