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Illustration by Doug Davis
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I've been asked to write my story, about a woman who used to compete in beauty pageants and dance and party every time the chance arose, and reconcile that younger woman with an emerging woman who uses a wheelchair, and, dare say, at 50 isn't pageant material anymore. Telling my own story may sound like an easy task, but I'm from Minnesota. We don't draw attention to ourselves, we are proud of our stoicism and we wear our modesty on our long flannel sleeves.
I am a childless orphan. My father died of Parkinson's when I was 22 and my mother a year later of ovarian cancer. I had an operation at 24 to end my ability to bear children. I dreamed of adopting or fostering kids, but it never happened.
Because I have facioscapularhumeral muscular dystrophy, nine years ago I began using a wheelchair and since then have gained 100 pounds. Right now I'm on my way to losing every one of them.
FSH is the most common form of adult MD. Classic symptoms include weakened muscles in the scapula, shoulders and face — "We won't wrinkle!" my sister Gwen always exclaims. A person with mild FSH can't purse her lips or whistle, lift her arms above her head, and has foot drop. But in its most severe form it can cause near-complete atrophy of every muscle, including pulmonary and heart. There is no remission, nor is there a pill to take to alleviate symptoms.
My mother's severe progression of FSH showed up when she was in her late 30s; in my sister Jackie when she was 12; in my sister Gwen when she was 30; and in me at 43, after I broke my leg from a fall. Until then I had no reason to believe I wouldn't live the rest of my life with anything more than mildly noticeable symptoms.
It's These Shoes
At 20, my ankles began to weaken and I would fall now and then. I probably knew why I was falling but I chalked it up to my shoes, sidewalk cracks or "something on the ground," and so continued wearing high heels, short skirts or tight jeans.
One morning, when I was 23 and working as a cashier at a car dealership, I was wearing a cute little sundress and 3-inch wedge shoes and I fell twice walking to the building. My knees were scraped and bleeding. When I did my usual pass of Chuck and the guys in the parts department — where everyday they'd sing to me Rickie Lee Jones' "Chuck E's in Love" — they saw my bloody knees. I blamed my shoes.
"The price for lookin' so good," hollered one of the guys.
Yah, I looked good on the outside, not so much on the inside.
In my 30s, in the mid-'90s, I began lifting weights and became the strongest and fittest of my life. Being in such good shape let me further deny the progression of my FSH.
By 1997, working 10 to 12-hour days, I regularly headed to the watering hole with coworkers for Rumpelminz, a potent German peppermint schnapps popular in Minneapolis. I started falling a lot, especially at work. This time I chalked it up to stress.
One afternoon, my printer died. Our IT guy had a bad back and asked me to go under the desk and unplug a cord. I squatted down but couldn't reach the cord in my short skirt without mooning him. Then I realized I couldn't get back up — my thigh muscles were dead. So he got down and then neither of us could get back up. My head was screaming, "What is going on?!?" while we laughed and called for help.
I fell more often, and a depression that had its roots in childhood became debilitating. At bedtime, I'd lay crying. When my husband, Bill, would ask what was wrong, I'd whisper, "nothing." During the night, I'd wake up wondering why I was still here, praying and wishing I were dead. There was no way I would live with a disability. I'd seen enough of it in my family and thought that it brought only pain and burden.
One evening after supper, while washing dishes, fear hit me like a load of bricks. Sobbing and choking, I collapsed into a chair. Bill ran in, asking, "What the hell's wrong?!?"
Between hard, wracking sobs I told him, "I can't live this way, I don't want to be disabled ... I just can't fall anymore, I want to die."
"That's it," he said. "You're going to the doctor tomorrow."
When I protested, he said, "Fine, I'll call Gwen and find out what to do."
The threat of him telling my family was worse than having to see my doctor. I'd figure out a way to kill myself later.
My doctor put me on an antidepressant and sent me to a counselor. It took several different brands and types of medication, but we finally hit on one that didn't make me feel either emotionally drained or panicky. My counselor addressed my "wall walking" and my wearing high heels with, "Why on earth don't you have a cane?"
I'd lived with my hidden disability for 20 years, and for me it was important that I looked good while falling to the ground.
One night I told Bill — my touchstone of positivity — that my counselor was nagging me about getting a cane, but I was afraid to make the move. The next day Bill came home with a cane. His simple gesture of acceptance allowed me to move forward. Still, although I used it to go to restaurants or shopping, I avoided taking it with me to my job.
My first day of using my cane at work was torture. I stepped off the elevator at Webb Publishing, my employer at the time, and saw Sarah standing at the receptionist's desk. Sarah was sweet, but also very loud and curious. I didn't want her to see my cane so I hid it behind me and took a step. WHAM! Down I went, flat on my face. Sarah turned and started screaming, "Oh my God, oh my God!!!" Our mailroom guy came running, along with a dozen other employees. Served me right.
We'll be OK
With the antidepressant and counseling I began to feel better. But before I could face life with a disability, I had to reconcile with my vulnerability — which I felt had led to my being sexually and emotionally abused — and rid myself of the fear I carried in my heart since I was a kid.
I wasn't quite 4 years old the first time I saw the fear and agony disability can cause. It was on my mother's face and it is burned into my mind's eye. I still feel the weight of it:
It's the summer before I start kindergarten. Once a week, mom lets me wear my pretty organza dress, takes my hand and we walk around the block to her friend's house for coffee. We only make it past our neighbor's house when suddenly she falls. In my toddler mind, falling is no big deal, I've been doing it all my life. But the look on her face clearly means something. After a minute she covers her eyes with her hands.
"What's wrong, Mommy?," I ask.
"Nothing, Honey, we'll be OK."
After she sits for a while, she gets up and allows me to guide her back home.
I felt helpless that day, witnessing my mother's pain. After that, when she or my sister Jackie, who also has FSH, would fall, the only help I could give them was to run and get a pillow for their heads and kiss their cheeks and pat their shoulders as they moaned and cried.
By junior high, seeing people treat my family with disdain made me very angry. I learned to be ashamed of my family and disability.
All of this shame and anger swirled into a chronic, depressive fear that festered inside my soul, until 2000, when I met my counselor, an expert on chronic illness and depression. She explained that most of our fears develop by the time we're 10 and then run us for the rest of our lives. Envision the tip of an iceberg above the water as the secondary emotion triggered by fear - for me, anger. Beneath the water, where the enormous iceberg looms, was my icy terror.
Understanding this helped me get past my depression and accept the fact that I had FSH. For the first time in my life I felt complete happiness and am now a positive and spiritually alive person. First, though, I had to dig deep into my soul to understand and calm my fear.
Everyone Will Know
I am the youngest of five children. Martin is 13 years older and nondisabled; Isabelle, 10 years older and intellectually disabled; Jackie, eight years older, with FSH since she was 8; and Gwen, five years older, whose progressive FSH symptoms began when she was in her late 20s.
My mother had progressive symptoms of FSH and was a stay-at-home mom, while my nondisabled father worked both full-time and part-time jobs. I say our family was a motley crew; Gwen says we were like Gilbert Grape's family.
Our neighborhood had a playground and an auto body shop - my mother forbade me to hang out at either place, convinced they harbored bad men. I went anyway, but she somehow knew. Years later, she told me she'd check the bottoms of my feet when I came in the house: Dusty clay meant the playground, black bottoms meant the body shop.
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| For years, Roxanne Furlong tried to hide her disability. |
I met no predators at the playground or at the body shop - I only had to go out our back door and cross our yard to find them.
My depression started after I was sexually abused by a neighbor at age 9, my first thoughts of suicide surfaced during junior high, and from then until 2000, I felt an underlying sadness. I blamed everything on disability. By high school, I agonized when out in public with my family. I was embarrassed having them at my school for band concerts, where I played the drums, or at plays, where I had bit parts.
One afternoon, at 17, I fell asleep on the couch and woke up with Jackie's nose about two inches from mine.
"You better see Dr. Zarling," she warned. "Your eyes don't close all the way when you sleep. That's a symptom."
Zarling was the local muscular dystrophy doc. My mom and I went to his clinic in an old wing of a hospital. He made me walk out of the room and down the hall in a hospital gown - I think he enjoyed my humiliation - to see how I walked. It was 1974, I was a virgin and extremely naïve.
"How's your sex life?" he hissed, looking down his nose over half-glasses.
"What?" I sputtered. Then he said, "Well, you can't have kids because they'll all be crippled."
I didn't return to an MD clinic until 30 years later. By then Zarling was dead and I needed a wheelchair.
Accepting, Choosing, Growing
In 1979, Bill talked me into running in a local beauty pageant. I didn't win but enjoyed it and ran in two more pageants. I gained confidence, grew socially and was chosen Miss Congeniality twice.
Bill and I married in 1983 and I joined his Roman Catholic faith. He knew I made the decision to not have kids because of FSH, but he didn't know my reasons were rooted in fear. I thought if I didn't bear the weight of children I'd stay thin, strong and beautiful, not become weak or crippled, like my mother. I worried I'd watch my children get teased and taunted or mocked and shunned like my sisters. Or they'd have a sister like me, who pretended their family was not their own.
By 1998 I was falling more and, just like my mother and Jackie before me, could not get up. One Thursday at work, I fell three times. It was embarrassing, but mostly frightening. That night I told Bill I couldn't possibly go back to work and was quitting my job. He calmed me down, and I made my first call in 30 years to the MDA clinic. They loaned me a manual wheelchair and ordered my first power chair.
By now, I wanted safety and didn't care about the stigma of a wheelchair. I welcomed the freedom to go shopping — all day at the Mall of America if I wanted — and go for walks with Bill again. My wheelchair freed my mind from the secret of my disability — I no longer had to hide my reality at work, which let loose the weight of fear from my shoulders. Shedding the denial allowed me to accept the future I already knew was mine.
For years I thought my life was God's punishment, but I know now this is just life. Although I'd love to see in the mirror what I thought my future would be - a healthy, vibrant statuesque woman with silvery hair and grandkids all around - I still think I look pretty good. I wouldn't trade anything for the calm and happiness I now feel.
The Helpful and the Ignorant
I never realized how much attention I used to get because of my looks until I began using a cane and then a wheelchair. Now I get a different type of attention. In public I feel the ignorance from people much the same as when it was directed at others in my family.
This summer I was at Family Dollar in the mall when I leaned forward to pick up something I dropped. Following someone's bad suggestion, I had recently moved the big wheels on my manual chair to the front. When the chair tipped forward and dumped me face-first onto the floor, I couldn't lift or right myself, and the employees said they couldn't touch me.
One of the employees ran for Bill, who was across the hall at an antique store. While I lay there face down on the dusty floor, I thought of other times in my life when I was desperate for help.
It's a weekday in '97. I'm on my way to work when my car stalls on a busy freeway. I carefully exit the car and step to the shoulder. A taxi driver and two gentlemen pull over. They debate who should help me until I choose the taxi driver for safety reasons. He drives me to the gas station — twice — to refill my tank, but the car still won't start. He drives me to work, leaves his card and tells me to call him if I need some food at lunch or a ride home. He won't take a dime, even checks back at noon to ask if I need a ride somewhere.
People can be so helpful.
But not this time.
Face down on the floor of Family Dollar, out of the corner of my eye I saw a man come down the aisle to help me sit up. Or so I thought. His size 11 shoes grazed the top of my head while he stepped over me. If I could have lifted my leg I would've kicked him.
Fortunately, soon Bill showed up with a porcelain lamp in his hand - obviously he didn't drop what he was doing - and pulled me up.
I could take it personally that a guy walked over me rather than stop to help, but seeing Bill standing there with his half glasses framing a worried brow, lamp in hand, just made me laugh ... it still does.
Pulling Through
One morning last year, I fell while getting into my wheelchair, landing hard on my knees, then my face. I was flat on my chest on the slippery floor for minutes when, like a fish out of water, I lost my breath and began gulping for air. I couldn't breathe. My dog just sat there staring.
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| Roxanne Furlong's husband Bill helps her to stay positive. |
Finally I grabbed my cane, hooked it onto the leg of our sideboard and pulled myself up to sit. With my cane I knocked my alarm necklace off the island (I always wear it now) and pushed the button for help. I was bruised and battered and I found out I have asthma.
For weeks after I would suddenly start crying about my near-death experience. Once again, Bill helped me to understand the positive side.
"You pulled yourself through it," he said. "You had everything you needed to call for help and to help yourself."
Calling out for help that day, my voice was almost silent, and I thought I would die if I didn't get off my chest. I cried to God to help me, and in my mind I saw Bill finding me dead on the floor. I couldn't bear the thought of not growing old with him. My desire to die, I realized, was finally behind me.
I now know that my beauty and strength come from within. I see it in Bill's eyes when I make him laugh; I hear it in my grown nieces' and nephews' voices, who still yell, "Auntie!" when they see me; and it comforts my friends in sorrow and entertains my sisters when we gather. But mostly, I feel my beauty and strength in my soul when I pray to my God who would never punish me, but who loves me completely.
