Adventures of a Scleroderma Patient in Beverly Hills

On Friday June 5, my husband and I were invited to attend the Scleroderma Research Foundation (SRF) fundraiser as a special patient guest. The gala, Cool Comedy Hot Cuisine, was held at the Beverly Wilshire Hotel. Bob Saget, who lost his sister to scleroderma, was hosting the event. Jimmy Kimmel, Jeff Garlin, Jim Gaffigan, and John Mayer were set to perform. Famous chefs, Susan Feniger and Mary Sue Milliken was cooking the food. The Wilshire is the famous hotel where Julia Roberts played Vivian, the call girl in Pretty Woman. In many ways, my experience at this event mirrored Vivian’s fictional journey in that iconic 1990 film. I realize I am comparing myself to a prostitute on Hollywood Blvd. and can assure you, this is a metaphor. The odds of me, in my scleroderma ridden body, ever making a dime off of being a hooker are slim.

You’ll remember in the movie that once Richard Gere’s character (Edward Lewis) hires Vivian as his “escort” for a week, she doesn’t know what to wear to fit in. It takes a lot of cash and the help of the hotel employee (Barnard) who befriends her to find a suitable wardrobe.

Just like Vivian, I too was at a loss as to what one wears at the Beverly Wilshire. I agonized over choosing an outfit for this adventure. When I asked my acquaintances at the SRF what people wore, I was told my husband should wear a suit but that women’s attire ran the gamut, because, “You know, it’s L.A., anything goes.”

Well, no, I didn’t know. I had never been to L.A. and my only reference points were Beverly Hills 90210 and The Beverly Hillbillies. I had a feeling none of my usual jeans or yoga pants were viable options for this event.

Just like Vivian had to brave shopping on Rodeo Drive, I steeled myself to face the local Macy’s. Lucky for me, I wasn’t scantily clad in hooker attire, so I didn’t get kicked out of Macy’s by a snooty salesperson. Shopping for a formal event is my worst nightmare. My entire body is covered in my personal scleroderma trademark, telangiectasia (red spots).  My arms are skinny and contracted; I have a permanent ostomy bag; and I can only wear orthopedic shoes, thanks to drop foot and neuropathy (parting gifts from my long stay in the ICU). There is so much to conceal that I typically wear outfits that make Betty White’s apparel seem risqué.

For a brief moment, I thought I would do something bold and buy some strapless, low-cut, form-fitting number. After all, if there were one place on Earth I could reveal myself, wouldn’t the Scleroderma Research Foundation Benefit be the place to debut my unique body? I could be a walking billboard for scleroderma awareness. This might be my one chance in life to wear something I never normally would. I envisioned celebrities in the room might see me and marvel at my bravery. All I can say is, thank the lord that my husband and friend Pam talked me out of that half-baked idea. Pam, who helped me choose my outfit, reminded me that I was going to be stepping out of my comfort zone by just being in a room with celebrities, so I should give myself the benefit of feeling comfortable in my wardrobe.

Pam was right. I was a hot mess as we drove up to valet our rental Chevy in a sea of high-priced luxury automobiles.  I felt as out of place as Vivian must have when she entered that same hotel. Thankfully, we were greeted warmly by several members of the foundation, whom I had previously met at an SRF event in Chicago. I felt relaxed, until we saw Jimmy Kimmel standing a few feet away. My husband told me to go up to Jimmy and tell him I have lived with scleroderma for 30 years and appreciate him supporting this important cause. Dave pushed me in his direction. “Dave, I am not going to talk to Jimmy Kimmel. He looks very busy!”

Dave gave me a similar suggestion when we saw Bob Saget breeze by us with John Stamos. I have wanted to meet Bob Saget for a long time to thank him for all he and the SRF have done to raise funds ($35 million) for scleroderma research. In my fantasy world, if I did meet Bob, I would ask him to write a blurb for my book that I’m shopping around to publishers. To me, Bob Saget also looked very busy. I was crippled with anxiety and fear. All my self-confidence that I’ve worked tirelessly to acquire disintegrated. It was high school all over again and I didn’t fit in with the cool kids at the popular table.

As we approached our assigned table, I was thrilled to see our seats were safely situated in the back corner. I felt like I was wearing a big sign on my forehead that read “I’m not cool enough to be here” and was excited to slink into my chair for the rest of the night.  Just inches from reaching my safe haven, Dave looked at me and mouthed something I could not decipher. He mouthed it again, more emphatically this time. What the hell was he saying? It looked like he was mouthing “The Ostrich.”

“I have no idea what you’re talking about,” I whispered as we sat down. I looked up and sitting at the table was Kate Flannery, who played the raunchy alcoholic on the television show The Office. Holy crap, I had just figured out what Dave was trying to tell me.

It turns out, Kate Flannery was good college friends with a woman named Camillia Monet who is a famous actress and producer. Camillia, amongst other impressive projects, acted opposite Tom Cruise and was directed by Spielberg in the 2005 film War of the Worlds. Her sister was recently diagnosed with scleroderma, which has compelled Camillia to support SRF. Kate and Camillia were both so warm and engaged me in a genuine conversation. I relaxed and realized that I was sitting with the cool kids and holding my own.

Dave came back from a trip to the bathroom and told me he talked with Jeff Garlin and John Stamos. “I was so close to peeing next to John Stamos, but then he stopped to talk with somebody. The entire cast from Entourage is here, so is Jack Black, Seth Green, Peter Dinklage, and Don Rickles.” Seeing my straight laced husband giddy with excitement, my confidence returned and I felt more like myself. In between courses, Dave and I went up to Jeff Garlin and Jack Black who were both lovely and allowed us to take pictures with them.

Later in the evening, it was announced that Queen Latifah was there as a special guest. Her mother has been diagnosed with scleroderma and she supports the cause. During dessert, I noticed that she was hugging fellow celebrities and saying her good byes. I whispered to Dave, “I’ll be right back, I’m going to talk to Queen Latifah” -words I never thought I would utter.

I went outside the room and tried to pretend I was looking at auction items. As the Queen passed by, a few other stalkers asked for pictures with her. The guy she was with looked irritated and whispered to her, “That’s the last photo.”  I had a choice to make. I could be my awkward teenage self who was too shy to approach Jimmy Kimmel and Bob Saget, or I could be the 40 year-old woman who is comfortable in my own thick skin. I chose the latter and tapped Queen Latifah on the shoulder (yes, I TOUCHED QUEEN LATIFAH!) and said, “I just want to let you know that I’ve lived with scleroderma for 30 years. There is a lot of hope for your mother to live a long time with this disease. I’ve had a bit of a rocky road and spent more than 200 days in the hospital, but I’m still here!”

Queen Latifah looked shocked and did a little song and dance (I’m not kidding), saying “200 days! 200 days! That could be a reggae song!” She let me take a picture with her and even took my business card for her mom.

After my initial case of paralyzing anxiety, I thoroughly enjoyed the night. I even got a little emotional listening to John Mayer perform (not unlike Vivian, who was moved to tears during the opera).
At the end of the night, Dave did not pick me up in a white limo with his head sticking out of the sunroof, nor did he climb a fire escape with a rose clenched between his teeth, or call me a princess. Instead, I drove off with the grouchy love of my life in a Chevy.

My evening at the Wilshire may not have been a fairytale, but I did get to meet a queen and in the end, felt like a pretty woman.

Disclaimers:

• If you’re a hooker, Betty White, drive a Chevy, or happen to be a celebrity at the event whom I failed to mention, I apologize if I’ve offended you.
• If you are a loyal reader, you know my blog is usually rated PG. Sorry this one is rated PG13, given the mention of prostitutes. Also, rest assured, my next installment of Scleroderma: The Mini-Series is coming soon.
• My husband wants me to mention that Jeff Garlin told him to “Keep up the good looks.” This made quite an impression on Dave and he’s been retelling it to anyone who will listen.