An Artist at Play

Tying the Not

Last month my boyfriend of nearly three years asked me to make him “the luckiest guy” and marry him.  This was a dream come true.  Without hesitation I said “yes!”  After Nick slid his late grandmother’s Emerald ring on my finger (which fit perfectly) I called my parents.  For the first time in my life neither of them answered their phones!  When they called back I told them the exciting news.  They didn’t jump for joy right off the bat and I knew why.  I explained to them Nick and I plan on having a long engagement because we know when we get married I’ll lose my Social Security Income.  After my parents heard this and realized we put a lot of thought into the engagement they were very happy for us.

It’s heartbreaking knowing if we got married now I’d lose my SSI and could lose the programs that pay for my assistants.   Nick and I are doing okay financially but if one of us loses our income we’d be screwed.  We could have a ceremony and not file for a marriage license.  That has pros and cons too.  I’m a writer/producer/actress/comedian and like most people in the entertainment industry I’m waiting for my big break.  I don’t want to be on SSI the rest of my life.  I want to work.

Unfortunately because of my Cerebral palsy my job options are limited.  Being an out-of-work actress waiting tables isn’t going to work for me.  When people who have different abilities get married they aren’t magically cured.  And it’s not Nick’s job to stay home taking care of me.  It really hurts knowing that by getting married it could  screw things up for us.  This should be the happiest time of my life but thinking about the backwards mentality of the government is frustrating.  The notion that any family can survive on a single income (unless you’re a millionaire) isn’t a reality anymore.  Prior to our engagement Nick and I talked a lot about what we want for our future, what marriage means, and much more.  We’ve seen each other at our best and worst.  We know what we’re getting into.  After all that I still love Nick and want to be with him.  I wish the government could see it that way.  For the mean time we’ll keep living in sin.

Mournings

Auntie Donna’s memorial was two weeks ago.  This was the second memorial in one month for my mom and I.  The only small fight we had was I think Mom should get a GPS.  She disagrees and thinks getting lost is an adventure.  I think going an hour out of our way on a seven-hour drive is cruel.

 

I’m really looking forward to going out of town for some fun and not to mourn someone.  This memorial was harder than Auntie Lucie’s.  We hadn’t gotten over Auntie Lucie’s death when Auntie Donna passed.  A lot of the same people were at both services.  I could tell a lot of people were still very angry about Auntie Donna’s passing.  Some people said it felt surreal and like we were back there to remember Auntie Lucie.  I agree.  It felt really surreal.  I had the privilege of speaking at the service.  I love being on stage, but not like this.  I made sure to write out my statement before I left in case I started to lose it.  This way, I had something to focus on and if I lost it, someone else could take over and read it.  I pulled it off.  I used every acting trick I could think of.  Luckily, the botox in my jaw keeps me from frowning.

 

This trip was completely different than when I went up for Auntie Lucie’s memorial.  I did not have the same feeling of family that I had last time.  I was grateful that Mom and I stayed with Uncle Ray.  He is Auntie Lucie’s brother.  I didn’t know him that well before the trip.  He’s an artist and we shared many laughs together in his living room.  His house is amazingly accessible, which made it much easier on Mom and I.  I was disappointed I didn’t get to see my cousins as much as I would have liked.  They were very busy cleaning out Auntie Donna’s condo.

 

The hardest part of the memorial was I didn’t feel Auntie Donna’s presence.  The memorial just didn’t feel like her.  It was wonderful meeting coworkers and friends who I had never met, but I wasn’t in a mood to be social.  I felt like everyone was searching for comfort.  I had no comforting words to give them except I believe Auntie Lucie and Auntie Donna are together and can finally have the relationship they always wanted.  I felt like I shut down around all the people.  I just wanted to be alone.  I didn’t want to feel like I had to be “on.”

 

Losing both my aunts so close together has been really difficult.  I’m finally starting to feel more like myself again.  My pilot writing class has been extra hard this quarter.  I just haven’t feeling as creative as usual, especially when it comes to writing comedy.  I pushed through and, with the help of some friends, I finished the pilot and punched it up.  Next week, I’m going on vacation.  I need a break.  I’m mentally, physically, and emotionally exhausted.  The break will do me good.  When I get back, I plan on revisiting the pilot and putting a final polish on it.

Good Grief

The past month has been tough to say the least.  My left foot has been turning inwards a lot so I went to a physical therapist to see what was wrong.  She told me I have Dystonia in my left ankle.  My Auntie Lucie, who passed away in July, had Dystonia in her neck.  I just thought to myself, “There is a God and it has a very ironic sense of humor.”  Dystonia just means I’m having extra muscle spasms in my ankle.  I will probably treat it with Botox but I’m waiting to visit a doctor before I make any decisions.

I ended up going to my Auntie Lucie’s memorial with my mom.  We had wonderful conservations in the car and didn’t fight once!  That’s a first for us.  I can’t express how grateful I am that I got to go to Santa Rosa.  Seeing my Auntie Donna after not seeing her for two and a half years was wonderful.  My Auntie Lucie and Auntie Donna were together about 23 years.  They split bitterly about two years ago and I hadn’t talked to Auntie Donna since.  As much as I love Auntie Lucie, I always felt more of a connection with Auntie Donna.  I don’t really know why.  She was very outgoing and funny.  She and I just kind of understood each other without having to say too much.  She loved dogs and parades.  She sang, “I Love a Parade.”  Why she loved parades was never really explained, but I got a kick out of it.  One time, when I went up there, I was probably in middle school, she asked if she could sing me a lullaby because she never had kids of her own.  I let her and spent entire night laughing.

My Auntie Donna’s brother John was there as well as her nieces Suzy and Sarah and Sarah’s husband Drew.  They’re all open, warm, and have great senses of humor.  You can tell they’re not from LA.

The day of the memorial, everyone was a wreck.  We had spent the previous night in the condo that my aunts once shared.  The family sat around bonding over memories of Auntie Lucie.  The day of the memorial was very emotional.  I realized it was the last chapter for Auntie Lucie.  My mom had to give the eulogy.  She was really nervous and didn’t like anything she wrote.  She did a good job though.  She kept it together and she really gave a sense of who Auntie Lucie was.  I wanted to share what I had written in my previous blog about Auntie Lucie.  I wanted to add to that.  Her biggest disappointment in me was that I’m not a lesbian.  She used to tell me all the time that I was pretty and smart and would make a great poster woman for lesbians.  I just don’t swing that way.  Instead, I walked up in front of everyone and said, “I’m Fran’s daughter and Auntie Lucie’s niece.”  And then, I started wailing.  I don’t mean polite, little tears.  I mean I was crying from my gut, really loudly.  I think it was the first time I really let myself do that.  It felt good, but I also felt bad that I didn’t get to share my thoughts.  I think people get the message that she meant a lot to me and I miss her a lot.  John told me the night before, a friend of his who’s a writer says, “Writers write; talkers talk.”  At the party afterwards, I told him he’s right.  Writers write and talkers talk.  It was the first time in my life I could not talk in front of a group.

I left Santa Rosa feeling peaceful.  I was excited that Suzy and I decided to be cousins.  I was looking forward to talking to Auntie Donna more and knowing if I ever wanted to reminisce about Auntie Lucie, I could call her.  Three days later, I got an email from Suzy saying, “Call me immediately.”  I noticed she had emailed my mom, so I called my mom, figuring she had already talked to Suzy.  My mom told me that Auntie Donna died.  I just started wailing again, like at the memorial.  Nick woke up and ran out into the living room, thinking I had fallen.  I can’t believe she’s gone too.  She died of a heart attack, just like Auntie Lucie.  All my hopes of reconnecting with her vanished.  I was really angry.  I think it’s because selfishly I wanted to spend more time with her and I had also just started getting over Auntie Lucie.  Losing someone else so soon was too much to bear, especially since my aunts were so close.  I spent a couple days at home, just hanging around.  I was grateful that I had gone to a storytelling salon the night before and I came home that night feeling like my life was getting back on track.  When Auntie Donna died, I lost it.  I’m feeling better now, but there were a lot of phone calls to Nick at work.  I just felt so sad.  There’s no other way to explain it.  I’m still digesting all that has happened.

I believe that my aunts are together now.  They can finally have the relationship they’ve always wanted because Auntie Lucie is free of pain.  Even though they were separated, when I saw Auntie Donna, I could tell she still had strong feelings for Auntie Lucie.  I find comfort in this.  I like to think they’re happy together and all the problems they had while they were alive are gone.  This is the only way I can move forward.  I still miss them both very much.

Auntie Donna’s memorial service isn’t until the end of the month, so I know I won’t really get closure until then.  I must say, this experience has taught me to appreciate people and life more.  I know that might sound hokey, but that’s all I can say.

What I’ve Been Up To

I realize it’s been over a year since I last wrote a blog.  Well, I’m making it a goal to get back to it and my Auntie Donna told me to.  Last year I was sick a lot.  Nothing serious, just a cold, after stomach bug, then sinus infections.  This blog will just be a quick summary of what I’ve been up to this year.  For starters, Amy Brenneman chose to produce my one act play “Sideshow” for an event to raise money for CHIME Charter School.  She got Taye Diggs, whom I absolutely love, to act in my play.  Dreams do come true!  I tweaked the play to fit the cast, all the while, taking a pilot writing class at UCLA Extension.  I’m happy to say that the play went better than I could have imagined.  However, my pilot is a piece of shit.  You win some, you lose some.  God forbid my ego gets too inflated.

Also while this was happening, I put together a staged reading of “Stuck in Neutral” which I co-wrote with Matt Chorpenning.  “Stuck in Neutral” is based on a book of the same title by Terry Trueman.  We do have the rights to the book!  The staged reading was fantastic!  The play needs some rewrites (I should be doing that now but I’m writing this), then we should be able to go into production.  Yes, that means you will be getting asked to donate money to a Kickstarter account.

I took a break from stand-up comedy because I had a lot going on.  But, my fellow comic and friend Chris Fonseca got me a guest spot with Pablo Francisco.  It was one of the best shows I’ve ever done.  The Irvine Improv was packed.  The energy from the crowd almost knocked me over.  The rush was amazing!

Perhaps, the biggest change is Nick and I getting our own apartment.  For more than a year, we lived at my mom’s house with her and her boyfriend.  Just imagine you and your significant other living with your mom and her significant other.  Take your time.  Keep thinking about it.  The rest of my blog isn’t going anywhere.  It’s a strange and scary thing to think about isn’t it?  I reached a point where I felt comfortable enough depending on my assistant when Nick wasn’t around that I didn’t need to live with my mom.  I also knew my relationship with Nick couldn’t move forward in that living situation.  Luckily, Nick got a new job and we were able to find an apartment.  The manager was very open and accommodating to my needs.  I was worried about being able to find an accessible apartment.  The hardest part about moving was leaving my dogs.  Although we have two cute kitties now, I miss my dogs and visit them often.  I have a feeling I will be the crazy old lady with a dozen dogs and cats when I’m older.

The end of June through the beginning of July, I had three weeks off from school.  I was really looking forward to this, however, the three weeks didn’t exactly play out with the relaxation I had hoped for.  My mom’s boyfriend was in and out of the hospital for about two weeks.  He’s at home, recovering now, but he was in the ICU.  Then, my Auntie Lucy died.  She’s not a blood relative.  She’s a relative by choice.  This has been really hard on me.  I didn’t see her that often, but I talked to her on the phone quite a bit.  She always supported me in my passions.  I know she would want me to write, so I’m writing this partly because of her.  She’s the closest person I’ve lost so far.  I’m glad we spent last Christmas together.  She got to meet Nick and Stella, my dog.  She loved them both.  The only comfort I find is that she’s no longer in pain.  She had Dystonia, which caused her great discomfort.  It saddens me that I won’t be able to go to her memorial because of doctor’s appointments.  I feel like she’s watching over me.

Our good friend Paul moved to Australia on Saturday to be with his partner.  Australia is a much more progressive country and allows gay couples the same rights as straight couples.  I’ve known Paul for eleven years.  He’s been a huge part of my life.  For half of those years, I saw him at least once a week.  He could make any situation funny.  I will miss him a lot, but I look forward to visiting Australia.  Before Paul left, we went to see “Magic Mike.”  We thought the movie was so terrible, we couldn’t stop laughing.  I fell on the floor as we were leaving the mall and just laid there laughing.  Paul laid down next to me and we continued to talk about how awful the movie was.  Two mall security guards approached us, asking if we needed help.  The only help me needed was getting that awful movie out of our heads.  It’s moments like this that Skype cannot replace.  I’m happy that Paul and Marwin can finally be together in a country that fully accepts them.

I just started another pilot writing class at UCLA Extension, so I probably should go work on the pilot idea.  This is the last class before I get my certificate and I’m determined to make the script not suck.  I will write more later.

Saturday was Shane’s Inspiration’s annual Women of Inspiration Tea. I was one of the honorees, along with Jerri Hemsworth. I was surprised when I received the phone call saying they wanted to honor me. Shane’s Inspiration is very near and dear to me. I’ve been participating in various fundraising activities for them since I was nine. Ironically, this year while shopping for a dress for their gala, I picked out a dress and said, “This would be nice to wear to a tea.”

It was a privilege to be honored. I was very excited when I found out they got my good friend Laura to present me with the award. Half of me was worried she would roast me, the other half believed that she would give a nice, heartfelt speech. Luckily, my latter half was correct. There will be plenty of other occasions to roast me. Right now, my birthday is the most popular. The tea presented me an opportunity to give a little back to Shane’s, since I haven’t had the time I once did. Writing the speech was easy, although I waited until the week before to do it, which was not the best to go over it for pronunciation. But I did a pretty good job. My speech therapist told me to stop eating before I gave my speech. My friend who was helping me was very confused by this, as was I. Apparently, I don’t move my muscles as gracefully when I chew as when I talk. You learn something every day. Had I known that, I would have eaten lunch beforehand. I had also told my speech therapist I was less concerned about giving the speech and more concerned about keeping my legs together in a not-super-short dress while giving the speech. Luckily, my legs didn’t spasm much that day and I felt fine but while I was giving the speech, I watched my speech therapist start to take her wrap off in case I needed to put it over my legs. That made me want to laugh, but I held it in. Being ladylike is not my strong suit.

Seeing my friends was the best part. I made sure to thank my mom in the speech so she got to play the proud mom role. She got really tired of that. There were wonderful spa stations set up all over the place, including massages, henna tattoos, manicures, and tarot card reading. I cut in line at almost every station. It’s the inspirational thing to do. I also got a giant trophy. Initially, when I saw it, I thought it was a vase. It’s beautiful, it’s just a lot bigger than anything I’ve ever imagined. I have a little shelf in my bedroom where I have some of the awards I’ve received over the years. There’s no way it will fit on there. After the tea, I went to a show where my former acting teacher received a lifetime achievement award and I wanted to yell, “My award is bigger than yours!” Size doesn’t matter.

I loved how everyone came up to me and told me I should get my nails done. People don’t realize having involuntary movements makes it really fucking hard to get your nails painted. I was too lazy to explain this to half the people there so I just smiled and said, “Not today.” All in all, it was a great day.

Staged Reading

Saturday, Matt and I did the staged reading for the play we co-wrote. This was my first time doing a staged reading. I had no idea what I was getting myself into. We put the reading together in four weeks, which I knew wasn’t a great amount of time, but I thought things would happen faster. We started by thinking, “Oh yeah, we’ll take a week for casting then have a rehearsal a week before the reading.” That didn’t happen. We had half the cast in about two weeks. What I didn’t take into account was people don’t respond right away to emails or phone calls. Then I had some people who said they could do it not be able to. One of my favorite responses from an actor was, “I can do the reading, but not that week.” This was my first time dealing with actors in this way. There were times where my loving relationship with them was tested.

Once we got the cast together, it took a little bit of time for the theatre to confirm which space we had. I would rather have a cast together and find out we had no theatre than finding out we had a theatre and no cast. Luckily, we got a great cast of very professional actors who came super-prepared. I was extremely grateful that they took the time to really get to know their characters and breathe life into the story.

Having the reading with an audience was really helpful. There were times when I could hear the audience gasping. That told me they were really into it. I got caught up in watching some the actors, but was able to keep my writer’s cap on. I tried to read along with the script, but my copy was out of order. That’s what I call being prepared.

After the reading, we had a feedback session with the actors and the audience, which was the predominant reason we did the reading. There’s only so much Matt and I can get out of a script by reading it to each other. There comes a time where I feel that I’m trapped in a tunnel and I need someone to show me the way out. Other people’s perspectives are the way out. Hearing opinions, whether I agree or not, is important. If someone says something about the story that I don’t agree with, it can challenge me to think, “Why does this not fit?” When I hear a suggestion I like, I feel inspired. It gives me a direction to take the story. Feedback allows me to find out whether or not I’m conveying the story I want to tell in a way that other people can understand. It’s a lot different when I’m reading a script and I know exactly what I mean than handing it to somebody else. It’s also interesting to get people’s emotional responses. People project a lot onto what you write. They take things personally that I never would have thought of. As a writer, it’s also my job to weed through what is their emotional stuff and what is a critique. Sometimes, it’s very hard to tell the difference.

Now, it’s our job to take the feedback, decide what we want to fix, and rewrite. Writing is rewriting!  I’m also taking a sitcom writing class, so I’ve gotten critiques about what I’m working on for that class this weekend too. So right now, I feel like I’m on critique overload. No matter what the critique, I try to respond as politely as I can, even when I want to scream, “That’s not the story I’m telling! Write your own damn play!” I’m grateful that we did the reading, and even though Matt and I have a lot of work ahead of us, I’m excited by the new ideas we have.

Matt and I have been adapting a novella into a stage play. We got permission from the author to write a stage play and are hoping to get the rights to the book after the reading on April 30th.

The story takes place in the mind of a severely disabled fourteen-year-old boy who cannot communicate. What sparked my interest was the story. What does go on in the mind of someone who can’t communicate or has minimal communication skills? How smart are they? Do they really like what’s going on? What’s their opinion on things? Although the book is fictional, it gives the reader some understanding that someone who doesn’t communicate could still be a fully functioning human being.   Yes, technology has come a long way. We now have lots of options, things are being tested that can employ electrical signals in the brain to control computer cursors. They’re caps that use technology similar to EKGs. Someone I know is working with someone who was recently paralyzed on communicating with her toe. It’s amazing how far we’ve come. I’m so lucky that nowadays, people with different abilities are not just shut away and institutionalized. Although, in some parts of the world, it still happens. We’ve come a long way, but not far enough.

After completing a pretty solid draft of our play, we sent it to friends for feedback. I was glad that overall feedback has been positive, but Matt and I know the play needs work. What surprised me was how emotional some of my friends became after reading it. I know some people who are like the main character or who are parents of children who are like the main character of the play. This seemed to really hit a nerve with them.

My mom told me when I was diagnosed that her only hope was we could communicate somehow. After talking to some friends, I was reminded that the majorty of parents fear that their child is not communicating to their full extent, leaving them to wonder what is really going on in their heads. I kept reminding my friends that this a play, it’s a work of fiction. I thought this story was interesting and needed to be told on stage. For some of them, the questions the play brought up made it really hard to read. I just wanted to know if it was a good play or not. I was completely unaware of the impact it would have on some of friends. I’m not a parent, thank god, so I never put myself in their shoes.

After sharing this with my mom, she told me some parents who she lent the book to had the same reaction the same reaction some of my friends had to the play. My mom gave me the book when I was thirteen because she thought it was an easy summer read. She was drawn to the book for the same reason we turned it into a play. 

Since the novella is written from the character who can’t communicate’s perspective, Matt and I had to think outside the box for a way to show this. We agreed having two actors play the same part was the solution. One actor would be temporarily able-bodied, speak to the audience, and have no interaction with the other cast members. The other would simply sit in a wheelchair and have some different physicalities because we want people to get that he is an actual person. By embodying his thoughts in another actor, we can create some nice stage pictures and show the difference between his physical life and his mental life.

It still all boils down to the parents. When I was born, the doctors told my parents I would be a vegetable and don’t waste their time.  I wasn’t born that long ago! You would think, in this day and age, people would think differently. But they don’t. It’s also easier to say, “Institutionalize them” than it is to explore options. The latter takes time and can be a lot of trial and error. Being a parent is tough. There are no set rules. What works for one family might not work for another. Having a child who can’t communicate offers another challenge. Luckily, most of the parents I know who have kids who aren’t verbal find other ways for their kids to communicate. I applaud them for taking the time to explore these options. It’s sad that this is not the norm.

Matt and I never intended the play to cause anyone distress. We had hoped it would be thought-provoking and teach people that even if someone can’t communicate, they’re still a person.

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