Jill S
People With MS and the Courage to Give
Chapter 6: Always Be Authentic
DO WHAT NEEDS TO BE DONE, give of yourself always, but keep it between you and God.
It was 1982. I was seventeen, a wild kid just out of high school. By day, I was a college student who wore preppy Ralph Lauren polos and couldn’t decide whether to be an artist or a dental hygienist. By night, I was a party animal with glow-inthe-dark eyeshadow, who cruised around town in my restored, Super Chicken yellow Ford Falcon, my big, ratted, hair-sprayed hair barely blowing in the breeze.
One night, driving home from my last class of the day, the radio blasting the Go-Gos’ “Our Lips Are Sealed,” I pulled into the local self-service gas station and noticed a little old lady who seemed to be having a hard time maneuvering the nozzle. She reminded me of Ruth Gordon in Harold and Maude—she was probably in her late seventies or early eighties, with sweet, sparkly eyes. I thought she was adorable. I got out of the car and walked over to offer her some help. She said, “Oh, thank you, honey, I would love some help.” I put the nozzle in her tank and while it was filling up we made small talk—the usual “how you doing?” “how’s your day going so far?” kind of thing.
But suddenly the tone of the conversation darkened as she confided, “You know, I’m having a hard day. My husband passed away recently, and he used to be the one to do this. I’m kind of clumsy because I’ve got arthritis. It’s so kind of you to help me out.” I told her I was happy to help. Then she leaned in and
said, “But it’s important that you hear what I’m going to say. Are you listening?” Quietly I said, “Yeah . . .” She continued, “It’s important that you continue to do good things for people, and that you continue to give unconditionally. I think you will learn a great lesson from this.”
I found myself getting a little choked up. I lightly touched her arm. “It’s okay,” I said. She went on: “A small thing like this can be really huge. So I want you to remember something.” She reached over and patted my hand. “Whenever you do a good thing, a giving thing, you mustn’t talk about it. People who tell aren’t giving for the right reasons; they do it because it makes them feel good, and that’s not unconditional. You can tell people this story, but real good things are between you and God.”
All I could utter was “Wow. Okay. . .”
I just stood there as she got into her car and turned on the ignition. She looked up at me and said, “Thank you so much. You made my day.” Then, with a wink and one last smile, she drove away.
Standing speechless in the middle of a gas station lot, impressionable seventeenyear-old that I was, I made the most important vow of my life to a stranger I would never see again.
That was twenty years ago. Suffice to say, since that time my personal journey has been an all day/all night ticket on the “Jill Plans and God Laughs Ride of a Lifetime.”
Not long after this chance encounter I left behind an art scholarship, dental school, and a job as a dental assistant to open up my own business. The economy was rockin’, and busy, affluent people were happy to pay giant money for all kinds of services. “Not Enough Time” provided landscapers, house cleaners, errand runners, and dog walkers—whatever people needed. It was a huge success. Money started pouring in and I was working like crazy.
A few years later my life took a completely unexpected turn when two florist client-friends in Laguna Beach asked me to help them find someone to water plants for them for ten bucks an hour. When I asked a friend if she knew anyone for the job, she blew me away by suggesting that I do it.
I said, “No way,” and reminded her that I was now earning as much money as a doctor! But without missing a beat, she said, “Yes, but you haven’t learned anything.”
Ouch. Way deep down, I knew she was right. So I closed up my business, keeping just a few clients, and for the next three years, every day from 7:30 A.M.to 5:30 P.M., I learned everything there was to know about plants. In time, I became an award-winning interior landscape designer, had tons of high-profile clients, and was featured in all kinds of magazines. I absolutely loved what I did. Eventually I went back to the old business, adding an interior landscaping division. Once again, it was a huge success. And I was still working like crazy.
But somehow, no matter how exhausted I was, I always honored the promise I made to that old woman at the gas station. Whenever I heard of anyone in any kind of need, I would just quietly take care of it. I’d turned into a kind of Secret Santa. And if I couldn’t help, I always knew someone who could. I didn’t do it because it made me feel good; I did it because it was what needed to be done.
And, just as the old woman had asked, I repeated the story of our chance encounter hundreds of times—to homeless people I’d meet, shirtless, jobless, broken hearted, whatever it was. That story just always came up. It still does. I’d always been a positive and enthusiastic person, always doing little things for other people, but after that “chance” meeting, it became a way of life for me.
And that was only the beginning. While I was busy working by day and giving to others by night, the Universe was busy working overtime to give me a gift of some heavy-duty life lessons—lessons that came in the most fascinating wrapping.
In August of 1996, my business partner and chief numbers person/money handler suggested we rethink our finances and cut out “unnecessary” expenses, which included a pricey medical insurance policy I’d had for ten years. I was always in excellent health, and in all that time, had never once been to the doctor. So we canceled the insurance immediately and decided to get a new, bare bones policy starting in January.
One night a month later, insurance-free and without a care in the world, I was entertaining a friend from out of town. When it came time to leave and she asked for driving directions back to the freeway, I said, “No problem—just follow me.” She didn’t see the cement truck up ahead either, blocking all lanes in both directions, trying to make an illegal three-point U-turn, but she did have a bird’s eye view when I flew around the bend and plowed into that truck head on at fifty-five miles an hour. The front of my Jeep Cherokee was a disaster—even my steering wheel was bent like a taco.
I hit my head good and hard, which left my brain pretty scrambled for a while. The doctors said I had what is called “post-concussion syndrome” and that it would eventually balance out. I wished I could have gotten the same prognosis for my bank account—and that I hadn’t canceled that medical insurance policy when I did.
Still scrambled, I went back to work as soon as I could. Because the left side of my brain bore the brunt of the crash, my right brain heavily overcompensated, which super-heightened my creativity. Although I hired someone to drive me around for fear that my temporary short-term memory loss might kick in at any time, I was designing the most incredibly beautiful floral and interior landscaping designs of my life. And once again I was working like crazy.
By the time the holiday season rolled around, it was Full Tilt-Boogie. I was working my brains out—whatever little I had left—eighteen hours a day, for
sixty days straight. I was so completely drained and spent, that I didn’t even have the energy to go to Las Vegas to spend the holiday with my parents. On Christmas Eve, after I did my last floral arrangement of the season and had a holiday bite to eat at a friend’s house, I dragged myself into my apartment, threw on my favorite oversized flannel shirt and sweatpants, got up just enough strength to get a little fire going in the fireplace, collapsed onto my armchair, and feel asleep. When I woke up, I was cold and exhausted. A few tiny embers were still smoldering in the fireplace, so I walked over and put my back to the fire to get warm. When my shirt got a little too warm, I lightly pulled it away from my body and gave it a little tug, which must have sent one of those little embers right over to my shirt and given it just enough oxygen to ignite my entire backside. I could see the reflection of that unbelievably bright light in the mirror on the wall. I went up in flames like a Roman candle.
Turns out I had third-degree burns over 23 percent of my body, and six inches of my formerly long hair was completely singed. Because the local hospital couldn’t handle burns this severe, I was flown to the University Medical Center Burn Unit in Las Vegas, where I was treated for a month. At that point, because I refused to stay there another minute, my mom, who happens to be a retired nurse, set up a sterile environment at her home and took over my care.
You would think that after I slammed into a cement truck and got third-degree burns over my entire backside, I might have gotten the message that the Universe was trying to tell me to slow down. But noooo. I went home too soon and, surprise, I went back to work. Finally admitting to myself that I probably was overdoing it, I trimmed my business down to just the design, décor, and errands divisions. But somehow I was still putting in crazy hours, partly because I was trying to get out of debt from all those medical bills from the crash and the fire.
I kept that up for three years, when one day I got a call from my mom, who
had recently beaten throat cancer. She said, “Jill, you’re done. You need to come home.” I said, “What do you mean?! I am home! I have a great apartment on the ocean; work is going great. Everything is wonderful!”
She pressed on. “Chuck [my dad] and I have talked it over, and we want you to come hang out with us for a while. To make the deal sweet, we’ll give you an all-expenses-paid, early-inheritance year off.” I kept insisting that I was fine, but she just persisted: “No, you’re done.” I knew that she was right. After all, I’m her kid—and by that time we had become so close I couldn’t hide anything from her. Even the fact that my work situation wasn’t actually that great and that I had just ended another failed relationship.
So I got rid of everything that wouldn’t fit in a five-by-seven storage unit and drove out to Las Vegas. I loved being home with Mom and Dad. They took such great care of me. When my thirty-fifth birthday rolled around in November, I asked my best friend of twenty years to come visit. We were at the movies one night when all of a sudden I couldn’t see. It was like there was a big patch of fog/smog over my left eye. My friend suggested that I might have strained my eyes from seeing way too many movies in one weekend.
The truth was, a lot of things had been going on with my body for the past two years that I hadn’t told anyone about. I figured I was probably just having some residual nerve damage from the burns, or just some repercussions from everything my body had been through. Or maybe I was just getting old. My solution was to go to the chiropractor or get a massage every once in a while. The symptoms would go away and I’d feel better. I didn’t know that these were things called “exacerbations” that would come and then disappear, which is why many people go undiagnosed.
I also had numbness in my hands and my feet, and one particularly fascinating whopper—I’d be walking down the street when all of a sudden my arm
would jerk wildly and cramp up like I’d gotten hit in the funny bone—turning my hand into a claw. I always hoped no one saw. Sometimes I would walk like I was drunk. Sometimes my speech was a little weird, and I would feel this numbness from my trunk down to my leg.
But the loss of vision was the thing that really freaked me out. So I finally dragged myself to an eye doctor. As he was looking in my eyes, he asked me how old I was. When I said thirty-five, he got this worried look. “I absolutely see nerve damage in there. Look, you have something called optic neuritis. It might not be reversible. I suggest you go to a neurologist and get an MRI because there’s a one-in-four chance that you have MS.”
“WHAT?!!!! I have WHAT?!!!!” I had no idea what MS was, but I knew it couldn’t be good. The look on my mom’s face told the whole story. The doctor decided against giving me glasses or an eye patch or anything. He said “Look, just come back and see me in thirty days, and let’s see what happens.”
Within those next thirty days I went from “can’t see” to “really can’t see” to “totally blind” (in that one eye). My vision went from 20/20 to 20/60. Every single morning before I opened my eyes, I prayed. And I prayed. I would say to myself “Okay, c’mon. It’s got to be better . . . It’s GOT to be better!” Wouldn’t you know, when I went back to see the eye doctor a month later, my vision was miraculously back to 20/20. He said, “I don’t know who you are, but I don’t ever want to see you again. You had optic neuritis, and now, you don’t! Good for you! Go have a good life! But you still might want to get that MRI.” Mom and I left the office and did a little happy dance in the parking lot.
I didn’t tell anyone that I was having all those other symptoms—including the phenomenal fatigue. And of course I was doing everything wrong for someone in a full-blown exacerbation. In fact what I did would have sent most people to the hospital. I went to the gym every day, used the Jacuzzi (which you’re never
supposed to do), spent forty-five minutes a day on the treadmill, then the exercise bike, then sat in the dry sauna, then went home and passed out. I might not have been officially diagnosed with MS, but I was definitely an official lunatic. And I still hadn’t gone to a neurologist or gotten that MRI.
I had to keep myself busy because something told me I wasn’t going back to Laguna. I was determined to get to work, so I continued to send out resumes, but I just had to find out what I had. So, in full-tilt survival mode, I got onto the Internet and started reading everything I could about MS. There it was in black and white—everything I’d been experiencing for the past two years: the fatigue, the numbness, even the weird arm thing. When I read about the neurological spinal stuff, where you can get a strange electrical shock through your body when you try to put your chin to your chest, I was pretty well convinced. It couldn’t be a coincidence that I had all these symptoms. But one little part of my brain still clung to the thought that it might all just go away.
I certainly didn’t slow down. I got a job selling the showroom of a popular high-end hotel and started working insane hours again. Eighteen- to twenty-hour days were not uncommon. At first the MS was manageable; it was always at the back of my mind, but I was completely driven to get on with my life and not have a disease. So I kept going. And going.
Then, after a few months at that ridiculous pace, I got incredibly sick. All the symptoms flared up big time. I got so sick that I finally went to a neurologist. He wanted to give me a spinal tap. After twelve failed tries at extracting some fluid from my spine, I couldn’t take the pain anymore. Even my third-degree burns didn’t hurt this much! I said, “I’ve got to get out of here! You have got to stop!”
I had moved out of my parents’ house and was living with a friend who just happened to have a friend who was a top cancer researcher at the University of
Utah, who just happened to go fly fishing with a top MS doctor. By this time, my equilibrium was so bad that I couldn’t even lift my head up off the pillow without heaving my guts out. Getting out of bed to go the bathroom often became an all-day event. Before I knew it, my friend had put me on a plane alone to Utah to see the neurologist. Two hours after landing, I was officially diagnosed. Not only did I have MS, but I had it full-tilt—with spectacular lesions. I had no idea what “spectacular lesions” were, but I could tell this wasn’t exactly a compliment. He remarked that anyone seeing my MRIs and looking at my history would think I was in a wheelchair. The fact that I was vertical and functioning was, to him, “just amazing.”
The diagnosis finally made, I thought my whole world would stop. What would happen to me? What would I do if I couldn’t work?! I made a deal with the doctor: I promised to keep my workday down to ten hours and he told me everything I needed to know about the ABC drugs. He sent me home, and I went back to work.
These days I work at one of the leading destination management/entertainment and modeling companies in Las Vegas, with some of the nicest people around. It’s a very “MS friendly” place because a few of my colleagues know or are related to people who have MS. Mornings are usually the hardest—a bit like getting the ol’ Spruce Goose off the tarmac. I just drag my sorry ass out and somehow get to work. I certainly have days where my body has plans of its own. But once everything starts feeling good again, I’m back in business, selling, producing, creating, being a part of a great team.
So I just keep going. And giving. And praying. I keep my mind so busy that I don’t pay much attention to what’s going on in my body. The exacerbations come more frequently than I would like them to, but I just move through them with as much grace as I possibly can. I learned that from my mom. She’s been
absolutely amazing, the strongest female I’ve even seen. She’s gone through so much in her life with such sheer grace and authenticity—and that’s what I want most in my life—to be 100 percent authentic and to do everything from a place of love and grace. I would love to have that be my legacy.
Lucky for me, authenticity and grace seem to run in my family. During World War II, I’m told, my grandfather, an affluent dentist, used to make a habit of picking up the checks for soldiers dining nearby. My dad, a rough old Cajun and proud marine from the bayous of Louisiana, was apparently something of an angel to a bunch of alcoholics and drug users—a fact we only learned after he died. So what that old woman and I didn’t know is that there’s something of a family tradition to helping—and keeping it secret. And I certainly haven’t forgotten my part. I organized a group of women in Las Vegas that I like to call the Angel Mafia. They are all busy women involved with the world of entertainment. You’ll never know their names, but whenever any of us sees or hears of someone in need—we’ve helped single moms pay their electric bills, found housing for women coming out of rape crisis centers, bought eyeglasses for children, given rides to moms who didn’t have cars, fundraised for homeless children, given makeovers to recovering alcoholics reentering the work place—all we have to do is pick up the phone and help is on the way. We just get it there, we do it, and we go.
Since I’m involved in the MS community in a very public way, I get calls all the time from people who have been touched in some way by this disease. Whether they just got diagnosed, or they know someone who just got diagnosed, or they care for someone with MS, whatever they want to discuss, I’m always happy to talk with them—and I’m very open about my own experience. When we talk or meet, I’m always sure to tell them I understand what they are going through, reassure them that their symptoms are “normal,” and give them
psychological support for all the weird thoughts you can have with a disease like this (like, Why would my husband want to stay with me now when I am not a whole person?).
When you’re diagnosed with something this unpredictable, you have to have someone to talk to or some safe place to go—whether you’re having difficulty trying to inject yourself in the leg with medicine, or don’t know which doctor to go to, how to manage your symptoms, or anything else that might come up. And something always comes up. So I just try to provide a safe place where people can vent, ask, explain, or share so they don’t feel alone. I’m so grateful that I can be there for them, because I know how scary this thing is—I know exactly where they’re coming from, because I’ve been there. I’m still there.
Sometimes we get to the gas station story. I’ll say, “I can give you a 100 percent guarantee that you can fix the depression you are experiencing, but it only works if you don’t tell a soul! It will change everything in your world.” And we take it from there.
As for where I’m going, well, I still just suit up and show up—and wherever life takes me, I go. Somehow over the years, however—since the car accident and the fire and the MS and everything since and in between—I’ve learned to take a few quiet minutes every day to just enjoy life. I’ll sit up on a rock and watch the snow fall on Red Rock Canyon, or look at my little puppy’s bearded mug, dance with my friend Joe Clark in the kitchen, or watch little kids with chunky legs run through the park. And I still think about that woman in the gas station and her sweet, beautiful face. Who knows—she could very well have been one of God’s little “worker bees” who are out there, all over the world, just spreadin’ the love.
