All I Can Taste is This Moment and Other Lessons From the Goo Goo Dolls

Dave and Lisa at CCHCI’m willing to bet most of my readers have never heard of Sharon Monsky. Until a few years ago, neither had I. Yet, it was Sharon Monsky’s legacy that led me to ask myself a life altering question;

WTF am I going to wear?

This question plagues me whenever I attend a formal event. My scleroderma ravished body takes anything backless, strapless, or sleeveless out of the running. Foot neuropathy and a slight limp limit me to orthopedic shoes. Throw in my tendency to wear gloves in June and I usually end up dressing like a conservative Eskimo in “old lady” shoes. So while I was thrilled to be asked to speak at the Scleroderma Research Foundation’s (SRF) Cool Comedy Hot Cuisine gala in San Francisco, the request propelled me into an unwelcome shopping quest.

I spent weeks scouring every department store in the Chicago area. Every time I saw my reflection in the fitting room mirror, my self-destructive devil reared its ugly head. I lamented over my odd body and was convinced I looked awful in everything. I actually hauled three dresses to California, just to leave my options open.

Once in San Francisco, I focused my attention on writing and memorizing my speech for the fundraiser. I was asked to represent the scleroderma patient community and I didn’t want to let my fellow scleroderma warriors down. Logically, I knew the words I spoke were far more important than the dress I wore. Still, I obsessed about my appearance, which irritated me profusely. Hadn’t I spent the last 18 months challenging society’s obsession with conventional beauty? Hadn’t I come so far after launching Face Off For Scleroderma and revealing my bare face to the world? Why had this event transformed me into a less evolved version of myself? Was it because Bob Saget, a board member and hero to the SRF, was introducing me? Was it because Bill Bellamy, George Lopez, and the Goo Goo Dolls were performing and maybe I would “accidentally on purpose” run into them during my sound check? Or, was it because I just wanted to look nice for a fancy event?

CCHC

After all that shopping, I ended up wearing a dress I already owned. The evening started with my sound check where I got my first hug of the night from the one and only Bob Saget. A few hours later, my husband and three of our close friends who live in San Francisco were there to support me as I was called up on stage to speak. Thanks to my amazing friend and college roomie, Laura, you can watch my speech here and see me get two more hugs from Bob Saget- yippee!

I thought the speech went well and began to relax and enjoy the magnificent event. Bill Bellamy and George Lopez were absolutely hysterical as was Bob Saget who always emcees the gala.Bill Bellamy George Lopez

Many people approached me throughout the night and paid me heartfelt compliments; I’ve been coming to these events for years, but you’re the first person who really made me understand what it’s like to live with scleroderma…… Your remarkable story inspired me…..you were so funny! yada ,yada yada, you get the point. It was incredible! I wish I could say these sentiments, expressed to me by strangers, helped me remember I’m so much more than my reflection in the mirror. But even as people approached me in the bathroom line, I caught glimpses of myself in the mirror and noted that I needed more lipstick and my tight dress made me look a bit pregnant.

SRF with Patients
I got to meet these wonderful fellow scleroderma warriors.

Still, I had a fabulous time and when the Goo Goo Dolls began to play, I raced up to the edge of the stage with fellow scleroderma patients and began to dance, just a few feet from one of my favorite bands. While dancing, I was approached by a beautiful young woman who said, as she wiped tears from her cheeks, “Hi, I’m sorry, I don’t usually cry like this, but I wanted to tell you that your speech tonight was amazing. I was so touched by your energy and hopefulness.”

“Thanks so much! I really appreciate that!” My words were sincere and I could see this woman was genuinely choked up.

“You remind me of my mom……..I’m Sharon Monsky’s daughter.”

I stopped dancing, and over the blare of the Goo Goo Dolls, gave her a huge hug. Sharon Monsky was diagnosed with scleroderma in 1982 and told she had two years live. Defying all odds, Sharon lived with scleroderma for 20 years, gave birth to 3 children, and founded the SRF, which has raised over 38 million dollars toward finding a cure. I never had the honor of meeting Sharon Monsky, but she is my hero.

I talked to Sharon’s daughter (more like screamed over the music) and learned that she was only 13-years-old when her mom died. Chills rippled through me. My own son is currently 13-years-old. As I write this, tears are falling down my cheeks because I can’t imagine losing your mom so young. I wanted to tell her that I’m a mother too, and I know her mom would have given anything on this earth to stay here and raise her three children. I wanted to express my gratitude to her mom because her work, determination, and energy have given hundreds of thousands of patients a reason to hope. I wanted to comfort Sharon’s daughter in my arms and never let go, as if that would somehow make up for her loss. But I knew nothing I, or anyone else ever did could ever heal those scars. Plus, I thought that would be super strange since we had just met.

I would have loved to talk to Sharon’s daughter for hours, but the timing wasn’t right. We parted ways and went back to dancing as the Goo Goo Dolls began to sing my favorite song, Iris. The lyrics almost made me crumble;

And all I can taste is this moment

And all I can breathe is your life

And sooner or later it’s over

I just don’t wanna miss you tonight

I write and speak a lot about how scleroderma is the deadliest of all autoimmune diseases. Yet somehow, meeting Sharon’s daughter brought the true tragedy of this horrible illness to light in a more concrete way. I was overwhelmed with simultaneous sadness and anger. I wanted to cry for the thousands of Sharon Monskys out there whose lives and all who loved them have been shattered by scleroderma. The thought that Sharon didn’t get to see the poised young woman her daughter had become tore me apart. I wanted to scream because I was so angry at myself for obsessing over a dress when life is so fragile.

Lisa Dancing
Here I am dancing with this adorable guy I’d never met before.

Instead, I chose to dance and belt out the lyrics with Laura, my close friend who has seen me through so much of life’s joys and traumas. I chose to soak in the friendship and love that was palpable in the room. I chose not to worry if I needed more lipstick, or if my stomach was sticking out, or if people were looking at me because I’m a weird dancer.

Today, June 29, is World Scleroderma Day. In honor of Sharon Monsky’s legacy, I know we will make her dream of a cure a reality. Until then, I’ll try to honor her memory by asking myself an actual life altering question;

How can I focus less on how I look and more on breathing in every moment, especially to honor those who no longer can? 

Disclaimer:

  • Last year, my husband and I attended this same event in LA at the famous Beverly Wilshire Hotel. I wrote about the night by comparing myself to Vivian (Julia Robert’s character in Pretty Woman, which took place at the Wilshire). This year’s event was held at the Fairmont in San Francisco. The Fairmont was made famous when Marilyn Monroe and John F. Kennedy presumably carried on their affair there. I toyed with the notion of comparing myself to Marilyn Monroe, but I couldn’t pull it off. Let me know if you have any ideas.
Shawn, Vic and Lisa
I’m lucky to have great friends who live in San Francisco.
Laura
My close friend and photog for the night.
bob
Dave and me with Bob Saget.

12 Comments »

  1. Lisa, I just got a private message on FB that the daughter of someone I casually know, just got diagnosed with Scleroderma. I’m guessing she’s in her early 30’s from what I know. Anyway, the daughter doesn’t feel comfortable calling me so the mom and I will share info next week. I’m currently at Whitehall, rehabbing from knee replacement. ( it’s taking every ounce of energy to heal myself, I didn’t want to get involved in someone else’s stuff right now. ( that would be the OLD me). Anyway, I remember, as I’m sure you do too, how scary the diagnosis and early info gathering stage was. I agree with you that before the Internet, the library articles and books were pretty limiting and gave a 7 year mortality rate. Not knowing what kind of Scleroderma or how advanced this young woman is, I’m not sure how much info to divulge or where to steer her to research for herself. Other than SRF, I know the Foundation offers wonderful educational lectures etc but even those were scary in the beginning especially to see people in advanced stages etc. Her mom has had Lupus for many years so she can help with the medical resources of rheumatologists etc. I may offer her Varga’s name ( and staff) to be put in the database and be followed. I’m writing to ask where to start as you’ve been a more active participant in support groups etc. I’m 26 years into this disease and pretty happy that I’ve been as stable as I am. Please help me help them. Thanks again so much for all you do and the wonderful humor that accompanies your efforts. My best, Cheryl Grossman

    Ps– She’s adopted and Chinese with 2 Jewish parents 😉. So the autoimmune thing really plays NO part other than good empathy and understanding.

    Cheryl, Sent from my iPhone

    >

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  2. Lisa– are you getting my emails? I’ve tried to reach out to you every time I see a post.

    On Wed, Jun 29, 2016 at 6:20 PM, Comfortable In My Thick Skin wrote:

    > comfortableinmythickskin posted: “I’m willing to bet most of my readers > have never heard of Sharon Monsky. Until a few years ago, neither had I. > Yet, it was Sharon Monsky’s legacy that led me to ask myself a life > altering question; WTF am I going to wear? This question plagues me wh” >

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  3. Just finished reading this incredible piece and then listened to your speech which was both inspiring and humorous. Don’t know for sure, but I think I might have gotten choked up as often as I chuckled. You are amazing. Keep writing. Have a wonderful summer break.

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  4. You are amazing, dear Lisa! You write so well and have such an encouraging attitude. I have not listened to your speech yet but I’m sure it will be informative and full of humor as well.
    You looked absolutely beautiful at the event…and your inner glow was I am sure felt by all.
    Take care any hoot to see you at the next support group meeting!
    Mary Elenz

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  5. Hey, Lisa- I haven’t seen you in a while as I’ve finally had the electrical pain stimulator implant surgery and am recuperating and learning how to manage the programs. I am fortunate enough to have something to offer relief when the medications failed, unlike those of you with Scleraderma. Hopefully, someday, at the very least, research will develop something for you as well, if not a cure. But, I have been keeping up with your amazing articles and your activities through FaceBook and also through my niece, Miriam, who sees your sister at their No Shame On U board meetings and events all the time. You have come very far since we did our selfies! I continue to learn more and more about both you and Scleraderma. I don’t know when you have time to teach!!! 😉 Take care….Barb Ament

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  6. What a tremendous writer you are. How you express from your core the uncomfortable truths individuals with scleroderma are forced to face. Systemic sclerosis cutaneous (SSc) has taken far too many too soon, often in their prime of their lives. I applaud your continued vigilance to stay in the light despite the thick cloud that scleroderma attempts to overcast on us. If we are fortunate to have children and loved ones (including hairy four legged children) that inspire us to do and be better by not giving in to the overwhelmingness of systemic sclerosis cutaneous, we can meet fabulous other advocates on Capitol Hill attempting to hold the light to our Congressional leaders and Senators to support our future through continued and increased RESEARCH. Keep on dancing! Healthy blessings, Catherine from CALI!

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