Tag Archives: family

ALS, Ice Buckets, and Grandmothers


    The above is me with my great-grandmother & grandmother in 1997.

The internet has been inundated over the last week with videos of people dumping buckets of ice water on their heads in support of ALS research. Like any trend, it has had its staunch supporters and vocal detractors. Criticisms range from cries of wasted water, slacker activism, and that this inane activity is distracting people from more pressing concerns. I even came across a comment where someone asked why we care about a disease that afflicts so few.

In the summer of 1998, ALS killed my grandmother. She essentially drowned in a recliner when her lungs ceased to function ending her healthy mind’s imprisonment in a functionless body. She was 55. The best case scenario for someone with ALS is to end up like Stephen Hawking—completely paralyzed (unable to move, unable to speak), but mentally alert and alive. The most likely scenario is to become increasingly paralyzed until the body can no longer support itself and the patient dies. Usually within 2-5 years. ALS is death in slow-motion.

My grandmother was a fiery Cuban immigrant who struggled to raise six children while adapting to life in a foreign country. She was tough, feisty, and loud. She was loud when she was happy and loud when she was angry and she adored all of her grandchildren even though I came along sooner than she would have liked (She was 36 when I was born). She’d ask you to buy “hamburger bones” and to put “the shits” on the bed. She had a nice couch in the dining room no one used covered in plastic we weren’t allowed to sit on and ceramic frogs with genitals. She always had a closet full of 3-Liter Pepsis. If the city would have converted the kitchen tap so it dispensed Pepsi, I’m sure she would have been ecstatic. She drove a huge Buick and refused to take crap from anyone. She was tough and she loved to laugh. Loudly.

We watched her body deteriorate and no one could do anything to stop it.  A woman who could bean you with a slipper from across a dark house with a sniper’s precision became unable to feed herself. My mother and aunts had to bathe her. On multiple occasions, as her teenage son lifted her onto a portable toilet I would duck out of the living room so she could have some semblance of privacy. This tough independent woman became dependent on other people for every tiny aspect of life the rest of us take for granted. She insisted on signing her own checks for as long as she could, but eventually that too became impossible. ALS stole away her body and her dignity. Eventually all she could do was sit on a recliner and watch Spanish TV. Many years later, I appeared briefly with Moodoo Puppets on a Telemundo station in Los Angeles. It saddened me that my grandmother was no longer around to see that because it would have made her so happy. When I started pursuing filmmaking, She constantly encouraged me to move to Mexico where I could make it big on Univision “like Erik Estrada.”  She also constantly pestered me to go to Spanish dances with her when I was a teenager. I regret that I never did. The last time I saw her, she was sleeping in the recliner. The next morning I was startled awake by the phone. I ran to it already knowing what I was going to hear. For years, I dreamed she could walk again. She would barely be in her 70s if she were still alive.

ALS doesn’t just affect a small number of people, it affects everyone that cares for those people. I hate that my grandmother had to spend the end of her life confined in a useless body confined to a chair. I hate that my great-grandmother had to watch her only daughter slowly wither away powerless to stop it. I hate that her youngest son, Steven, had to shoulder this experience during his high-school years. I hate that the world is a little less loud now.

Regardless of any qualms you may have with the Ice Bucket Challenge, it is working. A week ago, most people wouldn’t know the difference between ALS and anti-lock brakes. As of this writing, over $40 Million has been raised. If people get to have a little fun at the same time dousing each other, I’m okay with that.

Nerdist asked me to work on their Ice Bucket challenge video a couple of days ago. As I was compositing Chris Hardwick onto Tatooine I realized it would be ridiculous for me to accept payment for the job. I asked them to instead donate additional money to the charity. They gladly did so in my grandmother’s name. A few hours ago I received a video from Steven (my younger uncle) challenging me. It wouldn’t be right for me to walk away from that challenge, would it? Where’s my bucket?

Across Oceans

The Emerald Isle. The Alleged Milligan Motherland. The Land of Frightening Backroad Driving. The Realm of Numerous Castles and Cattle. The Place Where My Aunt Discovered Castle Beds Eat iPads. The Island Wherein Erika Passed 30 Years. The United Kingdom. The Even Larger Island of Castles and Varied Accents. The Place Where My Father Celebrated 55 Years of Life and 37 Years of Marriage With My Mother. The Kingdom of Impressive Universities, Fabled Rock-piles and Butter-beer Tours.

Two weeks. Good Times.
Even more photos on Facciabook.

Annual Summer Catch-up

I have stumbled upon a trend. Every year, my sporadically updated journal seems to hit an extended period of quiet where I am keeping busy, but have no desire to log it. Then I appear seemingly from nowhere and unleash a deluge of updates. Well, kiddies, it’s that time of year again!

After returning from Yosemite, May was relatively quiet. I went on a few fun rock-and-water-focused hikes, learned to make fire various primitive ways, and released the last few Moodoo Moments episodes online. The end of May brought the beginning of two ongoing adventures I’ll post about in future updates: the shooting of Silver Moon (a Western by Travis Stevens) and the medical probing of my esophagus in hopes of curing my lifelong swallowing problems.

June brought 3 weekends of Silver Moon shoots, further esophageal study, and a really cool hike down the rocky shores of Northwestern Malibu beaches. The fourth week of the month was dedicated to socializing with my parents and two nieces while they vacationed here in Los Angeles. Theme Parks, Outdoor Parks, Eateries, Theme Parks, Erika’s birthday, Chloe’s birthday, Dining with Erika’s family, and Theme Parks. It was a busy and fun week.

July began with a camera attached to a long tube exploring my throat quickly followed by a trip to Kernville. Whitewater Rafting and Whitewater Kayaking in one weekend (more on that later). The following weekend brought us to Bell where we helped Erika’s sister sell assorted dishes and desserts as part of a fund-raising event. And so, we arrive at today.

Sport Chalet offers a free introductory SCUBA class once a month. Erika and I checked it out. My one great irrational phobia is suffocation. This leads to claustrophobia at times—something I have had to push through in a few tight mine caves—and great unease when my breathing is obstructed in any manner. I have had difficulty with snorkeling in the past because of the way the goggles cover my nose. I knew this would be a problem today, but I was not going to let it deter me. We were introduced to the basics of SCUBA diving in the shallow end of a diving pool. It took me a bit longer than Erika, but I was able to acclimate myself to the nose-constricting face mask and the odd breathing apparatus. After toying around in the deep end a few times, we signed up for SCUBA lessons. Hopefully, we’ll be certified ocean divers by the end of the summer.

Over the next few days, I’ll post new entries about Silver Moon, Kernville, the Malibu hike, my medical misadventures, and my visiting family.

Pater Familias

Today Erika (my girlfriend-age 23) and I took her niece and nephew (ages 9 & 11) swimming at a public pool in Eagle Rock. On our way out, we crossed paths with a jovial drunken man—he assured us he was no longer a homeless man because he now lived in a mansion provided by Section 8. He wished me a happy father’s day as he waved his nearly empty 40oz. He then told me to have a good day and he hoped I’d get everything I wanted. He punctuated this statement, “But you already got everything: your wife and kids.”

I didn’t dare shatter his misconstrued fantasy, but gave him his dap and drove home with “my family”.

The Requisite Update

I’ve avoided this post for a long time, but I suppose now is a good time considering I can’t sleep. I haven’t really posted in awhile and a lot has happened and a lot has changed in that time. 2006 has been a very odd year so far, full of big changes. Some are great, some are terrible, some are still pending.

The year began with me miserable at work. I was ready to quit and take some risks involving my own business. Precisely at the last moment, I was offered a promotion to a Design position. I was at first reluctant, but then decided to accept it. It was a good decision. I am much happier, making better money, and learning lots of new and valuable things.

During this time, my great-grandmother, Mima died. That was one of my last posts. That is one of those inevitable moments I have dreaded my whole life.

Shortly thereafter, my girlfriend of eight years and I split up. The details don’t need to be paraded around here, but it boils down to this: while our relationship was great and she still means a lot to me, a certain amount of necessary passion had fizzled out and we couldn’t rekindle it.

I am now living alone in a studio apartment and I have a new girlfriend. She is a great girl, she makes me happy, and makes me feel things I’ve missed for a long time.

I’m still doing puppet shows regularly and I have been offered additional lucrative comics-related freelance work. Hopefully, this will all help me get my debt in order and finally buy a car. I haven’t had one in four years.

Things are promsing, but that doesn’t change the difficulties of getting there. I have always been relatively comfortable being alone, I often preferred it even while Jennifer and I were dating. Now, it’s really hard to be alone. It’s very uncomfortable, but I imagine it is necessary and beneficial I work through it. Some times I feel like a part of me is missing and I am living in a surreal parallel world I don’t recognize. This is going to be a very difficult, but seminal year in my life. I hope it works out for the best and I hope everything works out well for Jennifer too. Although we both want to remain friends, I fear that won’t be possible. That fills me with a pain I find hard to cope with.

I’m not one to cry much. I hadn’t cried in a few years that I recall. This year, there have been many tears.
Thanks for taking the time to read this. This sort of post is out of character for me. I’ll be back to sarcasm and violence soon.

Glendale, CA
Monday | 10 April 2006 | 2:04 AM

Greatest Lady Gone

Back in High School and College when I used to do drama, I would sometimes try to eke out tears or melancholy emotions by thinking of the saddest thing I could. Wednesday that “saddest thing” happened, my great-grandmother died. My parents called me that night and I caught a flight to Louisiana shortly after midnight. Irma (eed-ma) Sosa was born in Cuba in 1912, but no one called her that. Everyone called her Mima, which means “mother.” It was a very apt name. Mima only spoke Spanish and a handful of English words. She also spoke a silent language, an ancient language everyone can understand. Everyone who met Mima loved her, whether they could understand her or not. She was a saucy old lady and a prankster known to brandish a broom like a billy club. She had almost no belongings, anything she owned she would give to someone else. She made the best black beans on Earth and she always made sure everyone had something to eat. Joy for her was making everyone else happy. Nothing I can say here can even begin to do her justice. Everything I like best about myself came from Mima. I’ll always miss that old lady. I’ll miss her hobbling in like Yoda at Christmas time with a big grin on her face. I’ll miss hearing her call me “Yason” and my uncle “Estebey.” If everyone could be a little bit like Mima, the Earth would be paradise.

Things will never be the same.

Aint MIA

I haven’t posted in a while, been busy. My dad was in town this weekend and we did a few things. It was fun. Tokyopop went crazy last week and I no longer want to work there. I used to really like working there, but I can’t respect myself if I work for the kind of people who treat their staff the way we have been ever since last Monday. I’ve lost all respect for that company. I’m still employed there, but I’m out as soon as possible. If anyone knows of anything up my alley, let me know. My friend Mike, of Moodoo Puppets fame, had a kid Friday night. His wife, did at least. He isn’t a tranny.