My friend and I attended this event on February 18th. We missed the march and joined the rally at City Hall in downtown LA. It was a much smaller crowd...
We started out at my sister’s house. My niece had a day off of work so we grabbed her and headed to South Street. The last time I’d been there...
This is so cute. There are many variations on Pinterest. I think the original idea came from the Free People blog which is worth looking at. I had these animals...
Last fall when I heard about the Ice Bucket Challenge I claimed to have felt bullied into donating since I didn’t want to make a spectacle of myself on Facebook....
After 20 years in the Castro, my dad decided to leave for a flatter, easier life. St. Allison met me in San Francisco a couple of weeks ago to help...
We braced ourselves for the start of kinder this year. After all, we knew how pre-school had gone two years prior. She only cried every day for 1.5 years of...
It’s getting HOT and making pasta every night is killing me. I’ve been trying to branch out to more salads now that it’s summer. This is a really tasty dish...
This cute little burger place opened up in Sunset Park last year. It’s diagonally across from Bob’s Market. One day Maddie and I rode over there on my bike after...
It’s been exciting having this huge yield of lemons from my next door neighbor’s tree. I’ve been getting “Southern Living Magazine” this year thanks to my niece’s magazine drive and...
Last weekend G’s company sent us all to Park City which happened to be the last few days of Sundance Film Festival! We took advantage of Jack & Patsy’s stay...
Last fall when I heard about the Ice Bucket Challenge I claimed to have felt bullied into donating since I didn’t want to make a spectacle of myself on Facebook. (OK, I was too lazy.) So while I was one of the two(?) grumbling Ice Bucket Scrooges we donated money without really knowing why or the specifics of the cause. Later that fall a New York Times article popped up on my Facebook feed. It was written by a young mom and writer who had ALS. Without the Ice Bucket Challenge putting ALS on my radar I would’ve skimmed right over it.
Sarah is smart, funny, quick to laugh at her own expense, stylish and pretty. She and I have daughters close to 5 (well, hers is 5 and mine will be soon.) Her experience of motherhood combined with her progressively terminal disease made me curious. I started reading her blog. Slowly I started understanding what the excitement was over the Ice Bucket Challenge – how huge attention and funds were finally being directed at one of the most devastating terminal illnesses around.
In a nutshell:
1. ALS (amyotrophic lateral sclerosis: a- means “no”, myo refers to “muscle”, and trophy means “nourishment.” The sclerosis part refers to the hardening or scarring. ALS occurs when the neurons connecting muscles to the brain degenerate. When the neurons die, the muscles don’t receive messages from the brain thereby atrophying. The muscles controlling motor movement are the ones affected. The ones that control walking, cooking, chewing, holding a cup of coffee, picking up a child, bathing, brushing one’s hair. ALS slowly paralyzes a person until they can no longer breath independently. It is a real life horror story.
2. There is no known cause and no cure. The only treatment is a drug which can extend survival by about 10% if taken early enough. It can cost hundreds of dollars a month WITH insurance and can give some people miserable side effects.
3. Most people with ALS die within 2-5 years of first symptoms.
4. ALS is sometimes called “The Bankruptcy Disease” due to the incredible costs involved in caring for a pALS (person with ALS). Not only does the equipment needed cost a lot (walker, support braces for ankles, power wheelchair, Hoyer lift, bed rails, bidet, home renovations to allow the wheelchair to pass through doorways etc.) but caregivers are not always covered by insurance. If the pALS has to stop working that income is lost too. It can cost around $200,000./year to care for someone with ALS.
5. ALS is not incurable. It’s underfunded. Because it is a rare disease it is grouped with other orphan diseases that generate little to no interest with pharmaceutical companies. Few patients = no profit.
6. pALS can’t advocate for themselves for long due to the loss of motor function. Their families can’t either due to taking care of their pALS. Imagine caring for someone who can’t scratch their own itch and needs help changing positions in bed, eating, getting bathed & dressed, putting makeup on etc. If there are children, add that to the regular chaos of caring for them. Some do all this while working full time. pALS need currently healthy people who are unaffected to advocate on their behalf (behalfs?) That’s where I come in.
7. ALS usually strikes people after age 50 but in Sarah’s case she was diagnosed at 33 with her symptoms starting earlier. Her daughter wasn’t even 2 years old. It can affect any of us.
In June Sarah started her #whatwouldyougive? campaign to see what people would give up to end ALS. Participants started giving up their voices, use of a hand or arm, one of her friends will use a wheelchair to take the BART to work. He’s started his own blog about it- the planning and challenges involved. All proceeds of her fundraiser go to ALS Therapy Development Institute, a non-profit biotech company devoted only to finding treatments for ALS.
As my part of the #whatwouldyougive fundraiser, yesterday I gave up the use of my voice for the day. Many friends, family members and even some people I don’t see much donated money to the fundraiser. Thank you!! We have gathered over $800 and still have another week left.
Stay tuned for my post on how yesterday went. Though it wasn’t a fraction of what an ALS patient goes through, it was eye-opening.
If you haven’t been, it’s about an hour from Los Angeles.
It started out foggy and cool. Going on a weekday is key. Going early is best. The parking lot is almost empty.
When you arrive, you pay the entrance fee and can buy a bunch of tickets. This is the time to get a few tokens for the cars as well as some carrots for the animals.
We had the place mostly to ourselves at first.
No line for the pony ride.
M remarked that the ponies looked pretty bored.
We also picked LOTS of strawberries but my hands were too full to snap any pix. They are very inexpensive when you pick them yourselves.
After a full day we grabbed a bite at In-N-Out and headed home around 4PM.
This is a fun day. You don’t need a stroller because they have wagons to haul your kids/bags/water bottles & produce around.
- sneakers/socks (flip flops will get kind of grody)
- snacks (they have a food bar but it’s not always open)
There are two farms: Somis and Moorpark. Moorpark is the one with all the extras (besides produce picking): bouncy house, animals, petting zoo, pony rides, and in the fall, a corn maze. They also have a produce market on the way out. Somis I believe is much smaller and is primarily for picking produce.
9am-6pm (during daylight savings)
9am-5pm (during standard time)
Open March-Thanksgiving and weekends through Christmas
Closed Thanksgiving Day.
$6.00/person weekends and major holidays
Children under 2 are free.
After 20 years in the Castro, my dad decided to leave for a flatter, easier life. St. Allison met me in San Francisco a couple of weeks ago to help get the show on the road. I guess she and my brother knew if I went alone many hours would be spent looking through old pictures and packing broken frames, plastic tape rolls with 1/4 cm of tape left on them and a lonely thumbtack.
The first morning there we did a lot of stuff like this:
I love that shade of pink. That was his dining room and I never got tired of looking up out the window seeing the pink interior wall against the white exterior wall and deep blue sky.
We also gave away all kinds of things on Craig’s List. I totally recommend that versus the dump as it involves nothing more than hauling junk to the curb and then posting pix with descriptions to the free section of Craig’s List. Saves things from the landfill too.
That said, I think we could’ve sold this rug my dad bought a million years ago in Portugal:
I got so many emails about this rug. But we didn’t dare tarry. Alli and I just couldn’t stop ourselves from hurling things down the staircases and out the door!
By Friday afternoon we were in pretty good shape so Allie and I took a walk down Castro.
I hadn’t been there in a while. These were new:
As usual I got sentimental and felt something wet well up in the corners of my eyes thinking I still haven’t had a drink at the Twin Peaks bar (aka The Glass Coffin) and things of that nature.
When I later lamented to my sister in law about never having seen a movie at the Castro Theater my dad quickly reminded me that we had. I already forget what we saw despite this conversation occurring last week.
The Castro is a beautiful, magical neighborhood! I was in my mid 20′s when my dad moved there and every visit was exciting not only due to being in a city but also because of the soft light, view of the bay bridge from his living room, hills and coffee. Yes, the coffee was GOOD. The coffee was STRONG. I was drinking double lattes with every meal because I lived in Naples, FL where the coffee and cuisine was nothing to write about particularly if you have trouble getting over the “e” at the end of “Grill” in 50% of the restaurant’s names. Olde Naples Grille and Buena Vista Grille. There is nothing quaint about a peach colored strip mall on the side of US 41, no matter how many “e’s” you tag on the end of a name.
That night my dad took us to Alice’s for dinner. No matter what you order at Alice’s, it comes smothered in the same brown sauce.
Shortly after reading this fortune I got a job casting (non-violent) criminals for a documentary series. These things never lie.
The next day Ali and I felt we were in good shape so we took a long walk down Mission Street to the Embarcadero. We explored many precious shops inside.
I couldn’t help but feel sentimental and a bit sad walking there that night.
Something magical about the lighting and the hills, the people etc.
We had a wonderful dinner at Zuni! We ordered:
Chicken must be ordered 1 hour ahead.
In packing we found this coaster Andrew made as a child.
On Sunday we were doing so well we decided to take a drive down the coast, one last time.
Of course we had to eat first!
Finally we had to admit we were done and leave.
Good bye, Castro! Thank you for the memories.
A month or so ago we met Lyn in Chinatown (Los Angeles that is) for some dim sum.
Afterwards we descended the steep staircase
to head over to The Bob Baker Marionette Theater to see “The Nutcracker.”
There goes Lyn in the industrial elevator.
We met at the Theater. Founded in 1963 it’s the oldest children’ theater in LA and several years ago was designated a Los Angeles Historic-Cultural Monument (Wikipedia). G had taken the girls a year or two ago and last November, after Bob died at age 90, suggested we go in case it shut down for some reason.
There are some chairs lining the outside of the seating area but most of the kids sit on the ground as close to the “stage” as they can.
Here comes the Sugar Plum Fairy!
Lyn got each girl a marionette after the show. Thank you, Lyn!
It was fun to see the old pix of the theater’s film work.
We had yet another fun day with Lyn!
I highly recommend this experience. You can buy tickets online from their website. They are so totally helpful and friendly – when G wasn’t able to show up they offered to refund his ticket money! We didn’t even ask (or take them up on it.)
Bea gave me this card after daycare on Valentine’s Day.
Bea: “I made this for you.”
Me: “Thank you!” (opening it)
Me: “Which person is you and which is me?”
Bea: (Laughing) “Actually, one is Olivia (her friend) and the other’s Beyonce!” (Laughing uproariously now.)