Jesus Year: The First Year of the Rest of My Life After I Was Diagnosed With MS

By Ashley M Ratcliff

MS IS NO MATCH FOR THE MASTERPIECE INSIDE YOU.

How do you pick yourself up after being dealt a devastating blow? Ashley M. Ratcliff got a crash course in collecting the broken pieces of her once easygoing life and building something beautiful with them when her health suddenly declined. At the age of thirty-three, in the middle

• Language: English
• Publisher: Opportune Independent Publishing Co.
• Release date: Dec 1, 2020
• ISBN: 9781636160160

Ashley M Ratcliff

ASHLEY M. RATCLIFF is a writer, editor and blogger who lives to tell stories professionally and for pleasure. She began her career in print journalism after graduating from the University of California, Santa Barbara, where she studied sociology and professional writing with an editing emphasis. Ashley has since transitioned to tech, and currently works in internal communications at Snap Inc., which has brought Snapchat and Spectacles to the world.  Ashley co-authored a collection of short stories titled Stories 4 Women, which earned an honorable mention in the Hollywood Book Festival, and blogs about fashion, food and frivolity at ashleyadores.com. She currently resides in Long Beach, California, with her pride and joy, Ryley, the long-haired mini dachshund who loves mischief as much as she loves making her human smile.  Keep up with the latest on Ashley and Jesus Year at ASHLEYTHEAUTHOR.COM.

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INTRODUCTION

Imagine being mid-Wobble at a happy hour—I mean swag on a hundred, feeling cute and all—when your left foot suddenly feels like it’s stuck in a vat of molasses and refuses to stay on beat with the rest of your body. I mean, it just won’t let you be great. The vibe is killed, and your foot still refuses to cooperate after you’ve taken a minute to give it a rest. And then it gets progressively harder to walk in the following days.

This awkward moment was the beginning of an intense, patience trying, faith stirring sixth-month journey that ultimately led to my diagnosis with relapsing-remitting multiple sclerosis. I had heard about MS but didn’t really know what it was or how seriously it should be taken. I just knew that it was something I didn’t want. What I had experienced was a flare-up. Some call it an exacerbation, relapse, episode or attack. New symptoms appear or preexisting ones worsen. To qualify as a true exacerbation, the attack must last at least twenty-four hours and be separated from the previous attack by at least thirty days, per the National MS Society.

In my form of MS, relapsing-remitting—there are three others, according to the National MS Society: clinically isolated syndrome, primary progressive MS, and secondary progressive MS—I had an exacerbation and then my body went into remission, repairing itself as best as it could. So far, I have only had one attack, the big one that forever altered my life and led to my diagnosis.

For those who don’t know what MS is, it’s a largely unpredictable central nervous system disorder. Basically, my body attacks itself and depletes the protective sheath, known as myelin, that coats the nerve fibers in my brain, neck and upper spine. This causes inflammation and scar tissue, or lesions, and can make it difficult for my brain to send signals to the rest of my body.

Some days my feet and legs, mostly the left one, vacillate between tingling and numbness. Itches that can’t be scratched plague me, popping up like Whack- A-Mole in the spaces between my fingers and toes, on my face, and especially in my legs. Fatigue comes without warning and puts me in a sleeper hold, usually triggered by warmer temperatures. There are times when my thoughts disintegrate into thin air before I can get them out or when I do, I can’t vocalize them without tripping over my words. Sometimes it’s a combination of these symptoms simultaneously. Not exactly the two-for-one I look forward to.

Sometimes it lasts for a few minutes, and other times it’s on and off for a few days. For several months, the fatigue was so intense that I would get home from work and knock out on the couch, lights and TV still on, my dog running around the house tearing things up due to lack of supervision and probably out of annoyance for the lack of attention. I would wake up at the intersection of odd hours of the night and wee hours of the morning confused as to where the time had gone, and why I couldn’t keep my eyes open despite my best efforts. There are new tingles and twinges that throw me into a panic and send my thoughts into a tizzy, wondering whether it’s just a fleeting side effect of my finicky illness or if it is the start of something more severe and long lasting.

Multiple sclerosis is unique in that it affects people in different ways—that’s why it’s earned the moniker of the snowflake disease. The myth that Black people don’t get MS is, well, a myth because my melanin-endowed, Marley twist wearing, coconut oil loving, Electric Sliding at the cookout self is certainly living with it. So is Tamia (Hill—you know, the singer of the forever bop So Into You) and Montel Williams, who had the daytime talk show scene on lock in the ’90s and ’00s.

Results of a study looking at data from the Kaiser Permanente Southern California health plan that was published in the May 7, 2013, issue of Neurology contradict theories that Black people are less prone to MS as compared to Caucasians. In fact, compared to Caucasians, Blacks had a 47 percent increased risk of MS. The risk of MS was highest for Black women, whereas the risk of MS for Black men was lower and about the same as the risk for Caucasian men.

Here would be a great place to insert the number of Black people living with MS in the United States, but, unfortunately, that data doesn’t exist at the time of this writing. That points to a bigger blind spot of the representation of Blacks lacking in MS research. A PubMed review conducted in January 2014 revealed that there were nearly sixty thousand published articles in total on MS, with nearly fifty-two thousand written in English, but only 113 focused on Black or African American patients.

We can say with certainty that the disease is unpredictable and at times disabling. There is no one thing that causes MS. In uncommon cases, it can be hereditary, but for others, deficient vitamin D levels in the blood are a risk factor for the developing the chronic illness. At the time of this writing, there is no cure for MS, but I’m hopeful that this illness affecting nearly 2.8 million people worldwide and nearly one million in the US one day will be eradicated once and for all.

This illness finds some people in their teens, others in their golden years. For me, it was at the age of thirty-three. I was in my Jesus Year, really starting to grasp this adulting thing and feeling like my life was headed on the right path, when this unexpected diagnosis of multiple sclerosis caused me to grab hold of Jesus tighter than I ever had. This book will illuminate how I pulled myself together— through reluctant trial and error, a resolve to get the most out of my still young life, and tears, lots of them—after I was devastated by a life-altering diagnosis with a disease for which there is no cure.

Health is relative. How is wellness measured by the person who outwardly looks healthy and strong, but on the inside is juggling the invisible but very real symptoms of numbness, frailty, fatigue, anxiety, depression, brain fog, speech impairment, and countless other maladies that they can’t quite put into words?

I don’t profess to have all the answers. I’m by no means an expert, but I am expertly living my life and have become the authority on what best serves me now that I’ve discovered what allows me to live a full life despite having multiple sclerosis. As someone who is working a full-time job at a major technology company and, as such, have a robust insurance plan that has afforded me access to quality medical care, I know that the position I’m in places me at an advantage to others. It is a tremendous blessing.

This book is for the people who have been newly diagnosed with a chronic illness, MS or otherwise, and are scrambling to pull the pieces of their shattered lives together. In the grand scheme of things, my diagnosis has been relatively recent. March 9, 2018, is a date that has been forever etched into my memory like a birthdate of a child. Surprisingly, this illness has caused me to birth this very book.

I am still fairly green when it comes to this whole living with chronic illness thing, but I am proud of the way I have adjusted and found a new normal. You read that right. If you can’t big yourself up, then who will? Yes, I am PROUD of myself for making the choice to abandon my one-woman pity party and adopt a pie-in-the-sky optimistic path forward that involved me relying on the only infallible thing I know: my faith, my trust in Jesus Christ. He doesn’t miss. This book, however, can be valuable for anyone who practices any religion, or none at all.

These may seem like small steps to some, but the actions I have taken to create some stability have made all the difference for me. I share these experiences in the hopes that others who are grappling with getting their footing after their diagnosis with a chronic illness might glean some ideas on how they can proceed and live their best lives. Take them or leave them. I’m obviously no doctor. I can’t even stomach watching my blood being drawn.

Along the way you’ll meet some of the real people, characters if you will, who either helped or hindered me on my journey to find clarity before, during and after my diagnosis. Make no mistake about it: Just because someone has the letters Dr. in front of their name doesn’t make them the end all, be all when it comes to your health. Having resilience and a I wish a you-know-what would attitude is a must when navigating the heavily flawed, at times inhumane, health care system. In some cases, names have been changed to protect the identities of those whom I’m referencing. What I’m not about to do is get sued for libel!

Just because I have a handle on how to manage my condition doesn’t mean that there aren’t times when it feels like things are getting out of hand. It’s a constant dance of checks and balances and acutely listening to my body that has kept me on a steady path. That and God’s grace, of course. Y’all, I have no idea where I’d be without the Lord by my side. And I don’t ever want to know what that’s like. If or when another episode befalls me, I will at least have some framework for how to get back on track.

I wrote this book because I wish there were something like it, a manual of sorts, a guidebook of experiences and lessons learned, handed to me when I first received my diagnosis. There were suggestions thrown out but the overwhelm proved too potent to proceed in any organized manner. The first year after my diagnosis was messy, exhausting, heartbreaking, and faith shaking. But it got better. This very book that you’re holding is evidence of that fact. To the chronic illness warrior who’s reading this: Contrary to how you may be feeling, your life still has value, meaning and purpose.

The nature of multiple sclerosis is that it degenerates myelin. This takes shape in the form of lesions, or scarring, on the nerves. I want to get this book out while I still can, while I still have activity in my limbs and am not too weak to complete it. Too dreadful? I’m just being real with myself. MS robs people of their mobility and, in some cases, their sight. I thank God that I can still do most of the physical activities that I could prior to this run-in with MS. I don’t want to wait until I feel ready to get my story out, for that day may never come. I want to find healing in naming and claiming every thought and emotion I feel during this journey.

This book shows how a quirky, God-fearing thirty- something made it through the first year after being dealt a devastating blow. It’s about how I picked up the shattered shards of glass and attempted to glue them back together in a uniquely beautiful structure. Statistically speaking, MS won’t be what kills me but that doesn’t mean it it’s not a formidable foe. MS has walked the line of being my biggest adversary and my most astute teacher. Imagine that.

CHAPTER 1:

MY CROSS TO BEAR

My brain and my body don’t talk like they should, and this unfortunate disconnect has been a taxing topic of discussion among my doctors, loved ones and colleagues for the better part of a harrowing year. Relapsing-remitting multiple sclerosis doesn’t exactly roll off the tongue. These communication issues—the ones between my brain and my body—have resulted in some complex quandaries, mostly numb limbs, stumbles over words and steps, brain fog, and fatigue, to name a few. The nature of these debilities is largely invisible. You’ll just have to take my word for it.

Communication had never been much of an issue for me up to this point. Before my life was complicated by this chronic illness, I was well into a trajectory of writing and editing that I embarked on in childhood. I was that nerdy kid who wrote articles for the weekly bulletin in elementary school. It was a responsibility that I took way too seriously. The thrill of the byline, seeing my name in print, kept me motivated, energized. It still does. In high school it was all over my high school’s rag, the Falcon Flyer, and in college it was sprinkled throughout the Daily Nexus and made a few cameos in the Santa Barbara News-Press.

I began my post-college career (go, Gauchos!) at a small but mighty weekly newspaper on the Palos Verdes Peninsula, a hidden gem situated on the southwestern coast of Los Angeles County. I interviewed Donald J. Trump, before he landed the presidency, a handful of times regarding squabbles over his national golf club, but mostly covered gadflies bringing their squeaky wheels to the city council for greasing and wealthy wunderkinds with resumes far more impressive than mine. One furlough too many as newspapers were rapidly shuttering across the country sent me packing to greener pastures at a home entertainment trade magazine covering the film industry. Press junkets and screeners and swag aside, that publication, too, was on shaky ground.

After I was laid off from the magazine, I spent a year living in poverty, on purpose, as an AmeriCorps VISTA (true story—I’ll tell you all about it someday) for the nonprofit writing and tutoring organization, 826LA. I have since parlayed my love of storytelling into a career in internal communications at a little Silicon Beach tech company called Snapchat. I feel blessed in so many ways. My life, however, has not been free from bumps and bruises. I chalked all the random blemishes that decorated my slender, toffee-colored shins in my twenties and my cracked pinky toes up to being casualties of my clumsiness. Tripping over air and breaking the fall with my legs or stubbing my little piggies upon landing was as common as checking the mail. And don’t get me started on the handful of times when the keys jumped out of my grasp as I was unlocking my mailbox.

But if we’re counting the really big ones, upon reflection, there have been some pretty notable trips and falls. The greatest hits include the time I was walking through a small town in Portugal with my partner Daryl and his mother, when my foot missed the curb. Though I