HEN I FIRST MET MARLISA, she'd been traveling for eight months, visiting parts of the US that I'd only heard of. She was sitting on a friend's couch writing a letter, and when she looked up, we immediately connected. She talked about her travels and how different California was from the small Southern town where she grew up. "There seems to be a lot more opportunities out here," she said.
And as we got to know each other, she told me one of her life-long dreams in confidence. "It's always been a fantasy of mine to find a pair of jeans that fit me, at a women's store. Not at OshKosh B Gosh."
I stopped and looked at her petite frame and said, "This is California. I wear a size two and I feel big!"
Marlisa grinned and her eyes glittered with the possibility of fulfilling her life-long dream.
"So, it's a date," I said.
She opened up her planner and we scheduled a full day of shopping and dining. I was determined to find her the perfect pair of jeans.
On our scheduled day, we went to a little boutique in downtown Brea. Marlisa stepped out of the dressing room, modeling the fourth pair of jeans that I'd brought her, swiveling her hips from side to side. I smiled with accomplishment, knowing that I'd found her the right fit. Then she turned around.
"See?" she said, her eyes examining herself in the three-way mirror. "It gapes."
"What size is that?" I said defensively, thinking that there must've been some mistake. After all, one of my previous jobs was as a "Bra Specialist," and finding the right pair of jeans seemed easier than sizing a brassiere.
"I don't know." Marlisa flipped her head around to search for the tag, her soft brown ringlets dancing in spirals, and as she turned, I remembered the brand that I'd picked out.
"It's a size 0," I mumbled.
"It's okay. I'm used to it," Marlisa said cheerfully. "I'm having a good time and that's all that matters."
As I went to find Marlisa a blouse, I could see my mission crumbling before my eyes, and I knew exactly why this was her dream. I was naïve to think that I would be the one to change the world for her.
I've talked to Beryl about this, and we both share the same "near-sightedness" when it comes to the people we love. You can engage in a conversation with someone, like with Marlisa and me, while sitting at a kitchen table, enjoying hors d'oeuvres; then suddenly, she gets up, walks to the refrigerator, and it's only then that I notice her Cerebral Palsy. And it comes as a shock. Because, for the moment, I was engaged in a riveting conversation with an extraordinary mind and a kind soul, so much, that I'd forgotten about her physical challenges. This is why Marlisa's dream is more important than merely finding the right pair of jeans. For her, it's about becoming a woman.
At twenty-six years of age, Marlisa looks like she's in high school, and although most women would kill to look like they're still in their teens, Marlisa views it as a constant struggle to be taken seriously, treated with respect, and dignified as an equal.
Cerebral Palsy, or CP for short, is not one disease, but a blanket term that describes a variety of motor disorders resulting from brain damage that may have occurred during or after birth. CP affects muscle control, mildly or severely, and most often causes problems walking or eating. Children diagnosed with CP have other medical problems such as hearing impairment and speech disorders. And although the conditions vary, doctors have come to the conclusion, that in most cases, if a baby weighs less than three and a half pounds or is born prematurely, they are at risk for developing cerebral palsy.
In Marlisa's case, she was born three months prematurely and weighed only a little less than three pounds. She also had a twin sister who died shortly after birth.
Marlisa told me that her mom had a tough pregnancy from the start. "The doctor told my mom that she either had to have an abortion and go on, or face the consequences of dying during childbirth.
"At one point, we stopped moving. The pregnancy was pushing on her lungs because of too much fluid she couldn't eat but my mom wanted girls so badly that she made the choice to keep us even though she could have died."
I asked Marlisa how she felt about that, and she said, "How do I feel about that? I don't think another woman would've made that choice. That's a hard choice to make when you face the facts. And I think it's really remarkable. She had to have a lot of courage and a deep desire to want us, because otherwise, somebody else would've given up.
"I think about that everyday, because it gave me a chance to be me; otherwise, I wouldn't have existed. I feel my life is a privilege."
When I heard Marlisa's words, it humbled me. I'm sure I'm not the only one who grew up in a suburban middle-class world, thinking that life owed me everything, although I'm not proud to admit it. Marlisa further reaffirmed this fact.
"I was two and a half when I was diagnosed with cerebral palsy and I remember the diagnosis. They would throw you up in the air, and while most children like that, I didn't. The brain just doesn't have any sense of balance, so it scares you. You feel like you're going to fall, even though there's a person there to catch you. You don't like that because you know you're fragile."
"Is that part of the test?" I asked in disbelief.
"Yes, it is. The doctors were demonstrating to my parents that I did indeed have Cerebral Palsy. I would walk on my toes, this wacky little walk. I had Heel Cord surgery that was recommended and my mother drove me to therapy every week. And when they would exercise me, I hated it. I would scream.
"And my parents knew when I was born that there was something wrong, although they didn't know what. But they made the decision, right then and there, that they were going to treat me as a normal child, as much as they could. And my father was determined to help me in any way that he could. He wanted to build me this or build me that. He wanted to design machines and things that would go on my crutches so that I could carry things, but he never got a chance to do that."
Marlisa's father died when she was five-years-old. I asked her what had happened, and because she knew that I had a similar experience with my mother when I was twelve-years-old, she related the story to me.
"My father and some friends were out in the field ministry preaching, and they went on a break They were sitting at his friend’s kitchen table, having iced tea, and he keeled over and died instantly. It was a Wednesday morning and I was five, still in bed, and I didn't want to get up. I had my own bed for the first time in my life, and I was sleeping, and I felt that I needed to get up, but I didn't want to.
"I heard my mom and my dad kiss goodbye, and she told him goodbye at the front door and he never came home.
"I remember sitting on my mother's lap, touching her, and saying, "It'll be okay." And when I said that, I knew it would never be okay. But I knew that life had to go on, and I knew that it was going to have to work out."
Marlisa has an amazing ability to remember her early years of life. I too, remember things from when I was five, but her memories are much more vivid and valid, considering the events that happened to her at those ages.
"How did your mother react to all this?" I asked.
"She was in shock. We had different friends of the family pitching in who did things like take my sister and me to the zoo. Because I'm five and a half and I'm either in braces, or in crutches, or in casts, the whole bit. and my sister was barely three-years-old.
"He died on a Wednesday, and I guess it was Thursday, and we're at home and my grandparents are there, everybody's there, and my little sister is waiting at the front door. Well, my grandmother asks, "What are you waiting on?" And my little sister said, 'My daddy to come home.' And he wasn't coming home, and she's a baby."
I talked to Marlisa about her strong sense of family and her apparent devotion to her baby sister. She was quite honest with me in her response.
"I was jealous of my baby sister when she was born and after she was born. It was a Sunday when my mother went into labor with my baby sister and we were at a friend's house. Well, my father was playing the piano, he was a pianist, and as he started playing, my mother said, 'Don't.' And at the time, my father just thought , Okay, she's pregnant, she's hormonal, we won't mess with that.
"Anyway, she didn't want to say anything about being in labor because she wanted her hair to look nice. So she went home, washed her hair, and when the contractions came, she'd blow through them, and then it got to a point where she said, 'We have to go to the hospital.'
"And even though the doctors had advised my mother not to have the pregnancy, she did it anyway, and had a normal pregnancy. And my little sister was bright-eyed, from the moment she was born and determined to do it yesterday. And here I was, struggling with everything I had to deal with, and. it irritated me.
"I was irritated when she was born, but then she was walking at six months. And I thought this wasn't fair, but it pushed me.
"In my viewpoint, it's up to the parents, to make a choice when their child has something wrong with them. That they're either going to baby them for the rest of their lives or they're going to push them to be all that they can be. Because the child will use, 'I can't. I don't want to. I'm too afraid.' This mentality. My parents were equally delighted at my efforts, my accomplishments. And they helped me understand that there were many things that I could accomplish."
"When you say, 'push,' was there a tough love thing?" I asked.
"No. I knew the tone in my family's voice and I knew what they meant. They were always open with me, so we didn't have to have this continual theme. The biggest issue for me was with food. Yes, I had CP. Yes, I had been told at seven-years-of-age that I had a non-functioning gallbladder, which was why I was so sick.
"When I was diagnosed that year, it was August, and it was the time when I could have my cast off.you know, for my CP, I had to have a cast on every summer.but for the following summer, I was to undergo surgery, and when you do that, they put you through what's called a 'Gate Lab.' You know, like in animation, when they hook you up to wires? Well, that's what they do medically, just to see how you move. So I wasn't able to get my casts off that year."
"And on top of that, you had an eating disorder?" I asked.
"Yeah, I might've grown if I'd had the ability to eat. That was cut short. There's a reason why there's nine months in the womb.and when you get close to your due date, everything functions, and I didn't have that. So learning to eat and really value food came much later on in life. But I suffered.
"I was so little that I wore doll clothes and later sat in a highchair for a long time. I remember my mother putting chicken-noodle soup in front of me, and I couldn't lift myself up to eat it. The doctors told my parents that I was dying. I was skin and bones.
"My mother tried everything, and as a last-ditch effort, she went to a health-food store and talked to a woman who recommended liquid Multi-vitamin B, because it makes you want to eat. Well, that saved my life.
"When we'd go out to restaurants when I was a kid, they had all these different techniques to try to get me to eat-whether it was pictures in magazines of children starving in other countries-anything that they could do to help me have the desire to eat, they tried it. And there's a picture of me and I am unhappy, and in all my pictures I'm happy as a lark, I glow, but you put food in front of me and I'm angry. I would lock my jaw so tight, that it would take two people just to open my mouth. This was an ordeal every single day. My mother's primary objective was to get food in my mouth, and I didn't give in, because I'm a little kid.and you know, I'm a feisty person. It took me a long time to value food and I wish it wasn't the case, but it's true."
I asked Marlisa what she thought about women not eating to curb their weight. She related to me how sad that made her, because now, more than ever she relishes a good meal. And I know this for a fact.
Before we could hit the boutiques on our scheduled day, Marlisa told me how hungry she was. "I need to eat right now," she said adamantly when I asked her what our schedule that day would be. I smiled to myself, knowing her history, and took her to one of my favorite local joints. A little hole in the wall in Fullerton, called Rutabegorz, which serves up a fare of natural foods from an eclectic menu.
Marlisa had a hearty appetite that day and "inhaled" some hummus and chips, along with a soup and salad in no time flat. I was delighted that she had found something palatable, to say the least, because Marlisa was born a Celiac Strue which caused her past struggles with food. (Celiac: A common, but rarely heard of hereditary-disease that affects a person’s immune system, causing them to undergo severe emotional distress, among other things, from eating foods containing gluten etc.)
While eating lunch, we chatted about Marlisa's travels across the US, which she made by herself-something that most women I know of haven't done. Marlisa told me that before she started traveling, she thought that she was bound to spend the rest of her life at home. But when her little sister moved to the West Coast for a job, Marlisa made the decision to fly out by herself and visit her. That was nearly ten months ago and she's been traveling ever since.
During her stays with friends and family, Marlisa works on her writing, which has become an important part of her growth, and helps out with the cooking, cleaning etc., making friends wherever she goes. "It's all beyond any dream I ever had," she said, "and my sitting here with you doing this interview is a privilege I never dreamed I would have."
Marlisa also said, "Would I have liked to escape these challenges? In some ways, 'no.' I've felt a responsibility to work at being all that my family and friends believe I can be. I've been blessed to learn that life is a gift, and I feel that it can have purpose, despite the overwhelming challenges."
Marlisa attributes her growth and positive attitude to the support from her parents, her brother and sister, and to her faith in God.
And even though we didn't end up finding her the right pair of jeans, nor "the perfect fit," our time together was something I'd never trade in a billion years, for she'd shown me, in her own words, that, "Anything is possible."