Walking on Pins and Needles: A Memoir of Chronic Resilience in the Face of Multiple Sclerosis

By Arlene K. Faulk

Tai Chi is not about trying harder; it’s about letting go, being in the moment, feeling balance, and the fluidity of energy.

When you’ve been voted as “most likely to succeed” as a senior in high school with a bright future ahead, you set challenging goals and move forward to fulfill expectations. And as far as Arlene Faulk—accomplished businesswoman, storyteller, and Tai Chi instructor—knew, multiple sclerosis wasn’t going to get in her way.

At the age of 22, in the middle of working the busiest shopping day of the year, Arlene loses all feeling in her body from the waist down. Her mobility returns but she’s given no diagnosis, and one question pervades her thoughts: What is happening to my body?

In this moving and illuminating memoir of one woman’s years-long struggle to understand and conceal her debilitating symptoms as she ascends the corporate ladder in a major airline comes a story of perseverance, rediscovery, and hope in light of multiple sclerosis. As she jumps into the unknown, Faulk finds comfort and healing through Chinese medicine and Tai Chi. Her inspiring story demonstrates how a chronic and debilitating health condition lacks the power to control our lives and stop us from moving in the direction of possibility. 

• Language: English
• Publisher: Greenleaf Book Group
• Release date: Feb 22, 2022
• ISBN: 9781632994936

Book preview

Prologue

I am twenty-two years old on the afternoon when all feeling in my body vanishes from my waist down. As a management trainee alone in the stockroom of my department store, I extend my hand to touch my leg. Nothing. After kicking off my left shoe, I rub the sole of my foot across the floor. Nothing. My brain urges my foot to take a step. As the weight of my leg hits the floor, my knee buckles. It’s the day after Thanksgiving, the busiest shopping day of the year. All hands need to be on deck. This is the day I have to show leadership, rally the team together to handle the multitude of shoppers.

My head spins. What’s going on? Am I going to be paralyzed? My heart pounds, faster. And faster.

This wasn’t part of the plan for my life. Just a few years before, I’d been voted Most likely to succeed as a senior in high school. I am on track to live out that label. Growing up in a town of 7,300 people in northern Illinois didn’t stop me from dreaming big. At thirteen, I saw myself as a professional basketball player. At sixteen, I thought I might be a female Roger Ebert, an A-list movie critic. I grew up believing I could do anything, be anything, through hard work and with an education. I saw Mom and Dad exhibit qualities of perseverance, working long hours, saving money. My brother, sister, and I all had a bank account by the time we were six years old. We weren’t rich, but Dad, a family physician who emigrated from Europe, developed a thriving practice from scratch.

I kept the strong work ethic I inherited from Dad and Mom when I went off to college in 1966. Diligent with my studies, I faced social upheavals outside of class. During my sophomore year, parties with beer and scotch changed to marijuana and quaaludes. Student anger increased toward the Vietnam War, with regular protests and violence on campus. I, like many fellow students, lost trust in government leaders. They lied. I lost trust in big companies like Dow Chemical. Its Agent Orange killed people. As a journalism major reporting for the University of Iowa newspaper, I interviewed people and researched events that gave me an up close and personal account of how those in power made decisions, how many of their actions were self-serving, contributing only to their wealth and power.

As my senior year progressed, my direction after college wasn’t clear. Maybe I could strive to be a leader, with enough authority to make decisions that could positively impact a broad range of people, not just a few. While in college, I was elected to a university-wide judiciary committee and got a lot of ridiculous rules for women, like curfew, thrown out. During year three when I chaired the committee, we got the entire judiciary process abolished. When I accepted a management trainee position at this department store right after college, I hoped to continue my work to change outdated policies from the inside.

Now on a November afternoon in 1970, three months into my new position, my body caves in. My world caves in. Having enjoyed great strength for all my years to date, I’m stunned, petrified, fearing my big dreams will not become reality. As I get up to take a step and falter, I quickly return to the chair in the back corner of the stockroom. I’m not sure if I can get up and walk a few steps without falling.

A heavy fear consumes me. What is happening to my body, and will I ever walk again?

— CHAPTER 1 —

The Biggest Shopping Day of the Year

Three months earlier I’d moved to Minneapolis, to my first apartment on a tree-lined street four blocks from the Minneapolis Institute of Arts. I was so pumped to start my job as a management trainee for Dayton’s, a national leader in the retail department store business.

From day one, it was like sprinting out of the starting gate at the Kentucky Derby. I and my seven fellow trainees, eager to learn and prove ourselves, displayed our youth and vigor as we jumped into all assignments thrown at us. My department was fine coats. From the first moment I entered the sales floor, it was bustling with customers trying on coats of all kinds—wool, leather, cashmere—and most walking out with a purchase.

Twelve-hour days became the norm, starting with a staff meeting a half hour before the store opened. I spent a lot of time on the sales floor talking to customers, seeing the traffic flow patterns firsthand, and learning how seasoned sales staff marketed and sold. My boss, John, and I reviewed each day’s sales in comparison to projections. I rarely got time to sit down for lunch and was not bothered by running around all day in my two-and-a-half-inch heels. Downtime didn’t exist.

The fast pace suited me. In college, what I had enjoyed most as a journalism student was reporting for The Daily Iowan university newspaper. I’d loved the rush, capturing the story on-site, zooming into the newsroom, hearing the clickety-click of multiple typewriters, handing off my story to the editor and hearing, Run it with byline. Music to my ears.

This department store management trainee position provided similar momentum, focused on results and high goals to shoot for, every day a new challenge. Most staff had been helpful in sharing their years of experience and sales expertise. The fast pace and intensity were even higher as we prepared for the day after Thanksgiving, the busiest shopping day of the year.

On that Friday, I was at the store at 7:00 a.m. Shoppers lined up outside the doors an hour before the store opened. When the buzzer sounded, the doors flew open, and a sea of shoppers flooded our sales floor on a mission to buy.

After five hours with no restroom break, my body was calling for relief. As I dashed to the far end of the sales room, a sharp needlelike pain pierced my right ankle. Electricity flowed from my ankle up my leg. Standing so long could take a toll even on a twenty-two-year-old. But I had to keep moving. Around 2:00 p.m., feeling light-headed, I walked down the hallway to the employee cafeteria. I picked up my bowl of soup and took it to a small table. As I sat down, I realized there was no feeling in my right hip. Numb. What was happening? What was I to do? Eating didn’t make me feel better and getting up on my feet made my body feel weak and shaky. Slowly, as I walked back to my department, the feeling returned.

It was a madhouse around the coats department, so many people racing around, coming and going. It was enough to make anybody’s head swirl. My focus was on the dance in my body, alternating from needlelike pain to numbness. As I made my way back to the stockroom where it was quieter, my eyes zeroed in on the single chair in the corner.

My brain was in a fog. Who knows how long I was sitting there before my head clicked in to tell me I had lost all feeling from my waist down to the soles of my feet.

— CHAPTER 2 —

Tests

A muffled voice interrupts my stupor. The voice gets louder. Are you okay, Arlene? Are you okay? My gaze turns to the left, where my boss is crouched down in the stockroom, talking to me. Are you okay?

No, I’m not okay, I respond. My body has gone crazy and I’ve lost all feeling from my waist down. I’m scared.

The next thing I know, we’re sitting in a doctor’s office waiting room. My boss has pulled some strings to get me in to see his family physician. We wait only twenty minutes until he sees me. Normal vital signs. Symptoms seem to be neurological, he suggests, and I need tests. Tests? What kind of tests? And what about walking first? I feel alone here, new to the area. I need to call Mom and Dad.

Out of the doctor’s office, my boss accompanies me safely into my apartment. My hands grip the back of my sofa to steady my balance. I’m about to call Mom and Dad when the phone rings. My brother-in-law excitedly blurts out, You’re an aunt for the second time! Mom and baby girl, Stacy, are doing fine.

What great news, a baby girl, I say, hoping my voice sounds upbeat, not shaky and weak. I’m hurting, frightened, yet I say nothing about my situation, not wanting to spoil their exciting news. My spirit sinks as I put the receiver back on the phone base. My heart longs for family support right now, but they don’t need their spirits dampened, too. I’ll call Mom and Dad in the morning.

After a restless night of tossing and turning, I brew my cup of coffee, getting ready for my phone call. My beige rotary phone sits on the table. How do I say it? Do I just blurt it out? I rub my fingers back and forth on my chin. Mom will stay calm, but she’ll worry and have trouble sleeping. Dad will become overprotective and want me to move closer to home. He’ll fixate on getting me in to see the best doctors, to Mayo Clinic, if needed. He’ll fret, which will make Mom worry more.

I stand up. Still no feeling. My hand approaches the receiver as I sit back down.

Hi, Mom. I have something to tell you. I’m not sick but had a weird thing occur yesterday. I spill out what happened. She quickly gets Dad to join us on the phone. He wants to get me into the University of Iowa Hospital for tests. Even though it’s a holiday weekend, Dad works wonders and sets up an appointment for next Wednesday. Mom will drive to Minneapolis to pick me up, then go directly to Iowa City. Dad will meet us there. He has so many sick patients to see on Monday that he can’t take the day off.

It’s no surprise he can’t come with Mom to pick me up. He has always been totally dedicated to his patients. I remember, as early as five years old, being excited about a two-day trip to Wisconsin Dells. Imprinted in my head is how hard it was to get our family out the door and into the car. Getting Dad into the car, I should say. My older brother and sister, David and Carol, were already in the car. Dad was in the house talking on the phone, probably to the hospital staff, about one of his patients. Mom stepped into the garage with the picnic basket of our favorite sandwiches, cookies, and brownies, the last thing to pack. She made sure the Hi-Q board and tic-tac-toe paper sheets were in the back seat.

We were ready to go. No Dad. Mom suddenly disappeared into the house, the screen door slamming behind her. I couldn’t make out much of what Mom and Dad were saying, but I did hear Mom say, Come on, Elliott. Let’s go. Your patients will get along without you for a couple days.

Now, because of my health scare, Dad takes Wednesday and Thursday off to get me the best possible care, and meets Mom and me in Iowa City. On Wednesday morning, Dad, Mom, and I sit in green, straight-backed chairs in a neurologist’s office at the University of Iowa Hospital complex. Each of us, magazine in hand, try to pass the time, which seems to be moving in slow motion. How serious will this be? Will the tests hurt? Will they have lasting effects? My career plan does not include spending time undergoing lots of medical tests.

Miss Faulk? the medical assistant calls out, by a door to my left. I grab Mom’s arm on one side and Dad’s on my other side and we walk slowly into the doctor’s office.

When we enter the room, Dad takes charge. He explains why we’re here. Then the neurologist peers over his half-glasses and asks me to recall the events leading up to the loss of feeling. He also wants to know about my health issues as a child, as a teenager. I respond that my health until now has been excellent.

As I sit on an examining table, he has me reach out my hand, move my index finger to my nose, then out in front, and back to my nose again. He takes a little silver flashlight, with an intense beam, and shines it into my eyes. Next, he asks me to look peripherally to my right and tell him how many fingers he’s showing me.

Here’s what I think we need to do, he says, looking directly at Dad.

He tells Dad, with Mom and me listening, that he wants me to have a CT scan and a spinal tap with an additional procedure to inject air into the spinal column and then take X-rays.

Arlene will have to be hospitalized for two days, he says. We can admit her tomorrow, he adds, talking about me in third person, like I’m not there. Am I invisible? Hello, Doctor, I’m here. Look at me. Dad is a physician, but I’m the one who has to endure everything. I want to matter.

During the next two days, I go through the tests. Mom and Dad sit in my hospital room, waiting, only leaving to get a bite to eat or to stretch their legs by walking up and down the hallway.

The tests are completed. The doctor doing the spinal tap tells me I’ll probably have headaches from the air injected into my spinal cord. Right now I just feel groggy as I lie in the hospital bed on my left side. I’m glad it is over.

Dad gets up and starts pacing, walks out into the hallway and then back into the room. His brow is furrowed. Mom asks me if I want fresh water. She comes over to me and holds my hand. Dad sits down in the big leather chair. He is silent. Not more than a couple of minutes later, he gets up and walks out of the room again. He returns and stands just inside the door, staring straight ahead, but does not focus on me or anything else in the room. I have seen this pattern before. Dad cares intensely but does not communicate well when dealing with illness in our family.

Dad, I say, you’re making me nervous. I know how much you care about me, but all I feel is worry. That bothers me. It would be better for me if you leave. I’m going to be okay.

Mom gets up, gives me a kiss on the cheek, and puts on her coat. She retrieves Dad’s coat and gives it to him. He comes over to me, leans down, and gives me a kiss on my cheek, saying nothing.

You need to rest, Arlene, Mom says. We will go for a walk, have dinner, and come back to see how you’re doing before visiting hours end. She puts her arm through Dad’s and they walk out the door.

The neurologist contacts Dad at the motel with the test results. Inconclusive. That one word is what Dad says to me, inconclusive. No drum roll. No sirens. Just a vague word of uncertainty. I’m not sure why I don’t ask Dad what they tested me for. A brain tumor? A serious nerve condition? Maybe I don’t ask because I’m young and want to pretend nothing is wrong.

I want an answer, but most of all I want to feel my legs again.

— CHAPTER 3 —

Derailed

I’m wishing and wishing the feeling will return to my legs and feet. Wishing doesn’t make it so. They’re still numb.

On Saturday, Mom and I head back to Minneapolis. Kind and nurturing, Mom shops, stocks my refrigerator with chicken, hamburger meat, milk, and lettuce, and then takes off for the long drive home.

The next day throws me into a tunnel, and I’m not yet seeing light at the end. My head swirls, not sure what to focus on, not sure what will come next. I want to try to make the next step happen, rather than have it happen to me. What if I can’t? What if my dream of being a leader ends before it has barely begun?

I call my boss, tell him my tests are over, with inconclusive results, and my legs and feet are still numb. I don’t know yet when I can return to work. He asks me to check in with him in a week. My brother is coming next weekend and it will be good to talk with him. He is a second-year medical student at the University of Iowa. We didn’t get to talk when I was in the city undergoing tests. David and I rumbled and tumbled when we were kids, literally getting into physical fights that got rough, but we also rode our bikes side by side, played catch, and snuggled up in one stuffed chair together when we watched a scary movie like The Blob. On the quiet and pensive side, David has always supported me without pushing me one way or another. It will be great to ask him what might be wrong. He might not know for sure, but he is smart and is steeped in studying medicine.

On late Friday afternoon, David arrives, clutches me in a big hug, and asks how I’m doing. He sits down in the comfy green chair and I stretch out on the couch. I’m exhausted, even with so little physical activity. The tests wiped me out, I tell him, and my boss wants to hear from me next week.

What do I tell him about a time for returning? I don’t have a clue, I say.

You might not want to hear this, but your body will tell you when you are ready. It could take a while, he says. I feel discouraged. Why can’t my body spring back just as quickly as my feeling left? Maybe it can. I want to believe that.

It could take a while. I try to let those words sink in. I want to feel some progress. How can I make a decision based on not knowing anything? On Sunday morning when I get out of bed, my right foot hits the floor. I feel the outside of my right foot! David cooks scrambled eggs and bacon for breakfast, and we toast this occasion of feeling in my foot as we clank our coffee mugs together. He leaves, and I am left wondering again.

Regaining feeling is like water coming out of a faucet, one drip at a time. One spot, then in patches, feeling returns, first on the outside of my feet,