Here at CIONIC, we’re proud to celebrate National Disability Employment Awareness Month. Throughout the month, we are highlighting the achievements of individuals with disabilities in the workforce—and acknowledging the challenges they continue to face. Today, we’d like to share Faith’s story. Faith is an Enterprise Management Strategic Leader at CSC who is living with MS.
Here is her story.
Raindrops on roses: a few of my favorite things
Taking leisurely walks. My career. Ice cream sundaes. These were a few of my favorite things.
They were so engrained into my life that almost anyone who knows me associates me with them.
“Oh, you’re looking for Faith? She’s probably off on a walk somewhere.” Or, “Is that an ice cream truck? Bet Faith’s there already.”
Having favorite things is every bit as valuable as Julie Andrews told us in “The Sound of Music.” (Musicals, while not in my top five, are also listed amongst my favorite things.) So, the terror I felt earlier this year when I seemed at risk of losing all three of them was warranted. The thought of such a loss pulled on my soul and made my identity quiver; who was I if I didn’t have these passions in my life?
The fear of this loss wasn’t born this year. It started thirty years ago the first time I, pale-faced and dizzy, fainted in front of my “Appreciation of Film” class. It grew bigger years later when I first heard the diagnosis of multiple sclerosis (MS)—and bigger still as symptoms worsened and my abilities were chipped away.
But staring at disability paperwork and acknowledging that my legs and willpower combined were not strong enough to keep me performing anymore had me inconsolably panicked. This was my life, I begged desperately to empty rooms. This is ME, I sobbed into pillows.
Before this gets too bleak let me pause and reassure you: this story has a happy ending. At least, according to the singer Meatloaf it does, since “two outta three ain’t bad.”
POTS no pans
It was my second day of high school and I was still learning the multiple buildings and walkways of the sprawling 72-acre, rural New Jersey campus. My teenage self was convinced that I had the talent and gumption to be a professional actress, so I enrolled in a typically senior-level theatre-based elective. To get from my other core freshman classes to the elective, I had to walk down a curving path, over a bridge, and through three different buildings.
Needless to say, my heart was racing by the time I finally reached classroom 218. We all initially blamed the long walk and my lack of breakfast on what happened next. Still panting, I had taken my seat before my vision started to tunnel. I raised my hand to get the teacher (an intimidating man with a doctorate in drama). Before he could call on me, I collapsed onto the floor.
Multiple trips to doctors and hospitals later, I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). Essentially, as my pulse and blood pressure were countering each other; as my heart rate went up, my blood pressure would drop and I would faint. Unfortunately, as part of that condition, my heart would start to race when I would go from sitting to standing. As you can imagine, there was a lot of passing out in the first years as I tried to get a handle on how to do basic things without triggering POTS.
I was pulled out of all physical education (gym) classes and discouraged from acting. I spent part of my sophomore year at home school after a week-long stay at the hospital. I drank Gatorade to replenish electrolytes and keep my blood pressure up which also caused me to pack dozens of extra pounds onto my previously slim body.
And I slept. I slept all the time. The doctors thought I would grow out of that, but I never did.
Years later I would learn that POTS is often a presenting symptom of Multiple Sclerosis (MS).
20s: learning to navigate life with POTS
My life never returned to ‘normal’ after that diagnosis. I tried to be active but had no stamina and was too afraid to try and push myself. Games of volleyball or frisbee with friends would end with me sitting in a lawn chair, embarrassed, telling everyone else to keep playing without me.
I did walk, though. I needed to pause that during a few teenage years, but by my early 20s, I was back in my daily walking habit. By my mid-20s I walked three miles every day as long as it wasn’t raining or snowing. I loved the sun on my skin, the smell of earth in the air, and the meditative peace that the rhythmic tap, tap, tap of your feet can bring.
Not ever having been an academic lover, I surprised everyone when I had an instant passion for the working world. From my first job through a variety of positions and my current career, I loved doing everything I did and I put my all into it. I was a people leader by the time I was 22, and managed a full office staff of travel agents by the time I was 24.
I didn’t notice how dependent on caffeine I was becoming, even though the travel agents would tease me for the absurd amounts of diet soda I consumed every day. The fact that I was needing to take cat naps during lunch was a sign that I was working so hard, I assumed. The first time I had double vision I wasn’t even that phased and shrugged it off as too much time staring at computer monitors.
Worsening symptoms: walking difficulties, decreased stamina, vertigo, double vision, and more
What got my attention was when I started to struggle with my three-mile walks. I would start out fine, singing to myself as I strode underneath oaks and maples, the uneven sidewalk more shade than sun. It was on the way home that things started to change.
I found myself tripping. A lot. And when I went to bring my right foot forward to take a step it wouldn’t go where I wanted it to. It made no sense to me, but I could not seem to step where I wanted to step.
I’m embarrassed to admit how long it took me to see a doctor. I made lackluster attempts over the years, but as soon as someone suggested a neurologist, I pretended like I was fine. It was easier to change my life.
My walks shortened. I dropped miles and steps off of them as if it didn’t matter to me—as if it wasn’t odd. I started driving to my favorite ice cream store. I pretended not to notice that I had lost sensation in part of my hands. When I started getting vertigo when doing yoga, I abruptly stopped yoga. It was at an American Idol concert that I accepted the inevitability of seeing a doctor.
I watched Adam Lambert on stage, both of him, thanks to my double vision, and wondered what would happen next. I had practically fallen on the people sitting in front of us in the steep seats of New Jersey’s Prudential Center. By the time we walked out to the car, across the massive parking lot, I was hunched over at the hips too tired to stand up, my erratic walking made me appear drunk.
The following month, on my 29th birthday, I lay still as a corpse, my body surrounded by the deafening metal of an MRI machine.
Meeting with a neurologist: “It’s MS”
The next day was my first meeting with a neurologist. My mother drove there with me, yesterday’s birthday cake still untouched in my fridge. Despite the evidence to the contrary, we pretended we both thought that everything was fine. How could it not be? I had just turned 29, I had a life to live, and surely I had already faced enough health challenges. They were the stories we told ourselves on the short drive to meet the Dr.
Dr. K had blue eyes, white hair, and a wide smile. He was animated as he spoke, full of energy and enthusiasm. I can’t tell you the right way to deliver news like this, but Dr. K wasted no time or platitudes. “It’s MS.” He said, plainly. When we stuttered in confusion both having heard of MS in the same way you hear about gun violence “Yes, it happens and it’s horrible and should be stopped, but it doesn’t happen in my school, my neighborhood.” Until it does.
“Multiple sclerosis.” He explained when our blank faces belied our confusion. As he explained the condition, blank faces turned to fearful and then grief-stricken. Neither of us cried. We asked questions. Made jokes even. And I couldn’t stop wondering what it must be like to sit in his shoes and have to deliver this kind of news.
It’s amazing we retained anything he said but I can recite it by heart now.
Multiple sclerosis (MS) is an autoimmune condition that attacks the central nervous system, brain, and spine. Your brain needs to transmit information and it uses a kind of ‘fiber wiring’ to do it. And just like the wires we use to run our computer or charge our phone, the fibers need to have a protective coating in order to contain what is traveling across the wires.
We use plastic to coat our phone charging cables. Our brains use a substance called myelin. Multiple sclerosis is a condition that causes our white blood cells (our warrior cells) to get confused and attack the myelin. These attacks can happen anywhere in our central nervous system which creates different symptoms for different people depending on which wires were impacted.
My mother and I laughed as we drove home, joking about confused warriors and having ‘crossed wires.’ We were still laughing and cracking goofy jokes as we set the birthday cake on the table between us. Without plates or napkins, we ate the cake greedily, talking about how delicious it was and not how scared we were.
It wasn’t until we were both alone that night, safely hidden under blankets and nighttime, that we sobbed out the grief and the fear and too much cake.
30s: finding solace in short strolls, falling, and trying new medications
The years passed. I never walked three miles again, but would find solace in short strolls. I tried solu-medrol and Copaxone without success. Dr. K told me that I had a ‘very aggressive’ MS as we reviewed MRI films and I recounted worsening symptoms.
It was a fall on the unforgiving marble of my office building that led to my first time on short-term disability. It was my stubbornness in part that led me to be nose to stone, blood pooling red on the swirling shades of white. I hadn’t been willing to give up heels yet, though I had already downgraded to short stumpy wedge-like heels in lieu of anything tapered. My taller heels, including my favorite light blue summer sandals that a cubby-mate had taken out a ruler to measure their 5” incline, had already been tearfully put away long before.
I sobbed when I told my manager that I had to go out. She tried to be supportive but the impact on her world was evident for both of us. She had already made accommodations for me, changed my role in the company, and found a ‘talk to text’ technology before such things were commonplace.
I was only out for a couple of months as the doctor tried me on, at that point, a newer medicine that came with newly defined and frightening risks. Despite that, I gladly signed up for Tysabri. With the infusion center located on “Brick Road,” I created a medley of Wizard of Oz songs for the drive there, replacing traditional lyrics for my own. “We’re off to get Tysabri! The most wonderful drug of all.”
Tysabri was indeed a wonderful drug for me, and I stayed on it for ten years with minimal progression.
Progression: more medication, mobility aids, losing hope
When progression began for me, it came hard and strong. New symptoms emerged that had never existed before as old ones got worse. I had always been able to hide that I had MS from most people, an invisible illness some people call it, but it was suddenly as clear as a tattoo that read “DISABLED.”
I switched medicines to Ocrevus, the heaviest hitter of the MS Disease Modifying Treatments (DMTs). Ocrevus is designed to slow progression and despite how my story sounds, I feel confident that it has kept me, quite literally, on my feet.
The cane came first. We thought it would be short-lived, but it wasn’t. I still tried to take walks with my husband, slow walks with my cane in one hand and his gripped in the other. A symptom that required me to have minor brain surgery (which I still think sounds like an oxymoron) had me laid up for a while. After that, I adjusted to using a walker.
First, the walker was only for, well, walking. I would furniture surf around the house. After a few falls, one of which my face almost connected with the sharp corner of a table, I started using the walker everywhere.
The walker that converted into a wheelchair arrived earlier this year and, for me, it was a sign of lost hope or acceptance (I was not sure once) when I was excited and not saddened by its arrival.
I sat in the wheelchair as I attended a masquerade gala to benefit MS early in February. It was my primary mode of transportation around a cruise ship later that month, where I celebrated dear friends getting married. I remember leaning back on my husband as we watched the endless sea pass by us. We had been like this, so many years ago, without a wheelchair, without fear, watching the sea full of hope. Now, here we were, fiercely holding hands as we watched the sea hoping we were still full of hope.
We knew that traveling was a risk; Ocrevus is an amazingly powerful medicine but it also depletes much of your immune system to deliver its efficacy. It came as a disappointment—not a surprise—when I found myself sick after returning home. The escalation of symptoms that came while I was sick, often called a pseudo-exacerbation, also came as no surprise.
The MS symptoms not returning to my previous ‘normal’ after a few weeks was a surprise.
I tried to rally and find strength, but it was gone. I could barely get out of bed, sit up for my meetings at work, or walk from room to room.
Coming to terms with temporarily leaving work
I was terrified that everything I had worked for was slipping away. I tried so hard to stay positive and healthy and keep going and found myself once again sobbing desperately into my pillow, clawing at hope, begging it to stay.
When my doctor and I discussed how I was doing, I didn’t fight it. I knew I had to temporarily stop working while I tried to recenter and recover. I wouldn’t allow the thought that it would be anything other than temporary. Hope had taken on the form of stubborn determination.
For the first three weeks of disability, I slept. My brain and body needed to rest and I didn’t fight it.
The weeks that followed were life-changing.
Twelve weeks of disability: refocusing my energy and reclaiming control
I imagine that people think of disability as lying on a couch, watching Netflix, and eating bonbons. During my twelve weeks of disability, if I was on a couch I was probably sleeping, I struggled to finish one season of one show on Netflix, and I never saw a single bon bon.
For me, disability gave me the window to refocus my energy, reclaim control, and prioritize my life. I was ready to fight for my favorite things. I was ready to fight for me.
Fighting for me: making life-changes to better manage my MS
I found a physical trainer who understood the complexities of multiple sclerosis as well as the importance of laughter. His small gym in South Jersey was always full of patients pushing back against different ailments, talking to each other, laughing at the staff’s antics. I was there every day of the week to start, slowly tapering back as I balanced between hours of PT at the gym and home every day of the week.
I practically inhaled books. I read self-help, inspirational, and neurologically educational books. While my husband was still working, he read voraciously as well. Together we learned techniques for meditating, the neuroprotective powers of sunlight, what foods to eat and avoid, and how to believe in the sun in the middle of the night.
I changed my life based on what we learned. I developed a strict sleep schedule. I created a strict waking schedule, too, with times for meditating, sunlight, exercise, strength training, journaling, and a healthy diet. I did, after a surprising amount of tears and resistance, change my diet and say goodbye to ice cream sundaes. They are delicious, I will never deny that, but their short-term pleasure does not equate to the long-term good of feeling better.
Achieving the impossible: walking half a mile with my Cionic Neural Sleeve
Perhaps most miraculously, while I was on disability, I accomplished something I never thought I would do again. I walked a half mile.
That may not seem like much to an average walker, but for me, it was an unfathomable distance. On that day, my hands wrapped around the arms of my treadmill, I achieved the impossible.
I never thought that I would walk a half mile again. As someone who was barely able to make it from bed to the bathroom, walking a half mile seemed as doable as walking across the ocean.
That half mile was thanks to the magic and science of the Cionic Neural Sleeve. I had been talking with Dylan for weeks, who was rapidly becoming a new best friend, as he walked me through how to find the best way to align the sleeve to my body. He had as many practical examples as scientific details and was willing to delve into either as I asked questions.
It was after he reminded me to replace the gel pads (something I had been woefully behind on) that I first walked a third of a mile to my own delight and shock. I was so excited I didn’t tell anyone until I could prove that I could do it again. And again. And as my strength and my confidence in the sleeve and my body grew, I shocked myself by reaching a half mile. And that is when the celebrating began.
My family was thrilled, my friends ecstatic, my neurologist delighted. I was all of those things and hungry. Hungry for what this could mean – for what milestone I could reach next.
Whiskers on kittens: walking, working, and my Cionic Neural Sleeve
I returned to work both exhausted and refreshed after twelve intense weeks “off.” I had already planned my new schedule to fit everything in along with work. I was surprised at how little I craved ice cream. That snack was rapidly replaced by acai bowls, which are my new way to celebrate Friday nights.
I immersed myself in my career, excited to be back a part of that life.
I exercised every day, ready to reach two-thirds of a mile, excited to see the day when a mile becomes a daily habit.
And I have confidence that I will get there, with my blue Cionic Neural Sleeve wrapped around my leg and hope in my heart.
I will keep on walking.
I will keep on working.
I will keep on being me, the me I choose to be, impacted but not eliminated from MS.
Taking leisurely walks. My career. My Cionic Neural Sleeve.
These are a few of my favorite things.
