Multiple Sclerosis

The moment my mother held me as a baby, she knew I was different; that I was destined to live a life of purpose. At birth, my parents were told I had an aortic valve defect, and at the time my life expectancy and quality of life were unclear as a child living with congenital heart disease. My parents not only supported me through every open-heart surgery, cardiologist visit and the uncertainty of living with a chronic illness, but they also encouraged me to follow my dreams. And they were with me through every terrifying moment and every accomplishment. I still remember what my father said before my first open-heart surgery, “You are a survivor. Not only are you going to overcome, but you are going to share your experience so that others will too.” Those words stuck with me. My experience as a child with a chronic illness irrevocably impacted my life. With unwavering support from my family and community, I overcame every obstacle with strengthened faith and an emboldened spirit. I realized that my life was not by accident – I am meant to be on this earth, and I am meant to let the world know that I am here. I am meant to tell my story so that others don’t feel so alone. It is the kind of feeling that only people living with a chronic illness truly understand. My mother was right – I was born different – and that difference was important. This realization was the start of my lifelong mission before I even knew the name for it: advocacy. I adjusted to living my life with a chronic illness. When my husband, Marvin, and I married, he knew he’d assume the title of “care partner,” which he did valiantly. We knew how to deal with heart disease; we were prepared for it. What we didn’t see coming was the curveball that a multiple sclerosis (MS) diagnosis threw at us. I woke up one day and the left side of my face was numb, which lasted for two days. Intuitively, I knew something was wrong. I was familiar with my body; I had to be. As I recounted the details to my mother, she reminded me that I needed to trust my gut instinct – I had to get it checked out. What eventually followed was life-changing: an MS diagnosis. I didn’t know anything about MS. I barely knew anyone who had been diagnosed with it. That fear of the unknown only compounded when I started doing my own research and didn’t see anyone who looked like me. Historically, MS has been thought to be a white woman’s disease, and that is all I saw in my research. I couldn’t find much information about MS within the Black community, and it was frightening and devastating to be diagnosed with this disease that I knew next to nothing about. As tough as that MS diagnosis was, in a way, it brought my life full circle. It reminded me that as long as I am still here, as long as I can make it into the next moment or the next day, I’m living with purpose. After processing my diagnosis, I vowed to fight MS in the exact same manner as I had fought my heart disease – with faith, hope and intention. Using my life and my story not just for me, but for someone else to learn from and be inspired by. I have been a patient advocate for longer than I can remember, but one of my proudest moments in advocacy was when I took part in the documentary with the National MS Society, “Living Well With MS: A Guide for Black Americans.” As a Black woman with MS, I know just how difficult it can be to live with a disease where you don’t see yourself in the patient experience. That lack of representation can make you feel like you’re not included or relevant, or that the information doesn’t apply to you. The documentary created an opportunity for me to be a part of the change in how we think about MS and hopefully make an MS diagnosis less frightening for members of my community. Everyone’s story matters and diverse perspectives are so important, especially in MS, a disease that affects each person differently. One voice sharing a story can change the trajectory of someone’s entire patient experience because no one understands better than those who have lived through it. I hope that by telling my story I can inspire others to do the same, so that when patients are newly diagnosed, the information they find looks different than it did for me. For people recently diagnosed with MS, finding resources like the “Living Well with MS: A Guide for Black Americans” documentary and MoretoMS.com can help make them feel included, empowered and hopeful. Hope is so powerful – it’s what taught me to never give up. I’ve lived my entire life hoping that I can make a difference because I live every day with a purpose, and you never know when something may change. The power of hope allows you to follow your dreams and embrace all of who you are. To never give up. You are your entire experience – the trials and the triumphs, the joys and the pains, the highs and the lows. Even on days when I’m struggling, hope is what keeps me going.

Multiple sclerosis is exhausting. Fatigue was one of my most severe symptoms during the relapse that earned my diagnosis. It’s still my biggest and most debilitating MS-related issue. It was a big part of why I left my job. It’s affected friendships. I think about and confront my fatigue frequently. I was diagnosed in my 20s, like many people with MS. Being “too tired” in your 20s isn’t really a thing. I remember going to bars while the entire left half of my body was numb and buzzing, barely having the energy to talk. I remember feeling guilty when I finally started cancelling on people, before I had my MRI and didn’t know what was going on with me. I still took a multi-day road trip and attended a wedding, though. The worst thing I thought I could be was flaky, disinterested and/or lazy. We are culturally afraid of laziness, and even three years post-diagnosis it’s difficult for me to convince myself I’m not sometimes exaggerating my fatigue. But I’m not lazy or exaggerating, and neither are you or your friends or family with MS. Here’s what I wish everyone understood about dealing with MS fatigue in your 20s/30s: 1. It doesn’t always seem to have an obvious connection to anything, and the random unpredictability is often the scariest part. The work my body is doing to overcome central nervous system damage and nerve demyelination just takes up a lot of energy. 2. The unpredictability makes me a lot more cautious and conservative in what I will try. It takes a lot of slow risk taking and practice to see where the line is, and it’s constantly changing. A lot of that work is undone with each relapse and new symptoms. 3. While lots of sleep doesn’t reliably improve fatigue, a lack of sleep almost always worsens it. Even one night of less than eight hours feels like I’ve been awake for three days. I’ve driven the wrong way down one-way streets, forgotten names of people I see every day and had vision so blurry I couldn’t recognize my students or the number of the bus I needed to take. I have to be really strict about my bedtime in a way that’s foreign to my friends who haven’t taken bedtime seriously in literal decades. 4. Sometimes mental activity is a lot more exhausting than physical activity. Preparing and going on a job interview will leave me much more worn out by the evening than a day walking around the city. Going to a party and meeting new people is already pretty tiring for an introvert, but throw in MS fatigue? I’m sorry, but I’m probably going to be leaving your party early. 5. Pushing through the fatigue is never a good idea. It’s hard to ignore the messages of never giving up, even when you feel too tired. It’s even harder to say no before you’ve become too tired, but you know it’s coming. FOMO is real, but fatigue (and the fatigue hangover the next day) is worse. I’m still re-learning this lesson too often. 6. Work/life balance is almost impossible. When I worked full-time, my weekdays consisted of waking up, going to work and coming home to lie down and/or sleep. There are no after-work drinks, evening classes or even time to make dinner. It’s often expected that the beginning of your career will be less balanced, but it’s difficult for coworkers and supervisors without MS to understand how severe the imbalance is. 7. Not being able to work full-time, or working from home, doesn’t mean I suddenly have tons of free time. A lot of my day is taken up by budgeting my energy and basic daily tasks. It’s doing the stuff I couldn’t do when I worked and fitting it in around naps and potential very low energy days. It’s frustrating to hear “I’m sure you can fit it in” when I’ve already tried to carefully balance my week’s schedule. 8. There’s mourning involved in how drastically my life has changed. It’s hard to accept I can’t do the same things I used to and what my friends are still doing. Your social life changes and your circle becomes smaller. 9. There’s also acceptance and understanding, and I finally learned how to be a self-advocate. I learned to say no because my body forced me to. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via MangoStar_Studio.

I never knew I’d be lucky enough to see my children trick or treat. I thought walking the neighborhood in combination with standing was out of the realm of possibility for me. I’d accepted that I would revel in taking pictures beforehand and hear about their evening at the end of the night. But this year, that all changed. After living 13 years as an undiagnosed patient, untreated for multiple sclerosis, I’ve now been on medication for three years. My neurologist warned me that it might take a few years for treatment to calm my symptoms. He made no promise that I would improve, but was hopeful the wide range of fluctuations I was having would settle. Some days I could barely stand. Other days I ran errands. Some days I wanted to give up. Other days provided renewed hope. Over the last six months, my physical functioning has become more constant from day to day. Flares still present themselves, but to a lesser degree and less often. I can depend on my body more than I ever could before. I still cannot guarantee I’ll be able to attend a function at my children’s school or roam a museum at a future time, but it’s much more likely my body will allow it now than it was before. We’d planned for my husband to take the kids trick or treating in a friend’s neighborhood. But when a group dinner was arranged, I decided to join beforehand, and determine, in the moment, if I’d join for the trick or treating portion of the evening. When that moment arrived, my boys and their friends dashed towards the driveway, excitement propelling them into the evening. Without a second to contemplate my ability to make it, I followed behind, hoping I’d prove my worries untrue. With Spock, Captain Kirk, and their friends leading the way, I followed their trail for an hour; no sitting or resting involved. We walked, we laughed, and the children had a Halloween evening they’ll remember for years to come. And I was part of it. I didn’t need to hear all about it at the end of the night, because I lived it, firsthand, for the first time ever. If someone had told me two years ago, or even last year, that I’d go trick or treating with my kids, I wouldn’t have believed them. I don’t know what future Halloweens will look like or if I’ll be able to do this yearly, or ever again, but I’ve proven to myself that what is impossible one day, may be possible again in the future. I am hopeful. From desperate nights spent crying on the bathroom floor as an undiagnosed patient, I now see the sun shining brightly on my future. I’ll never say never again, because I can see now that the best is, certainly, yet to come.

I have lived with multiple sclerosis for 9,855 days (and counting) but the last 270 days have redefined me. After spending most of my adult life hiding from and lying about my health, I am now out and proud. I walk with my cane with dignity. I tell my story with confidence. And I say yes, I have MS, but MS does not have me. But it did. MS had me for more than 25 years. For a quarter of a century I went to extraordinary lengths to hide my MS from everyone but the very closest family and friends. I thought that by hiding my MS and lying about the source of my ever-changing ailments, I was in control of it. It was only when I was finally forced to introduce MS to my world that I realized my disease had been controlling me for almost two-thirds of my life, and not the other way around. I did not make my peace with MS and came to a gradual and gentle acceptance of my illness. I didn’t even make the choice to tell people. The disease backed me into a corner and left me with no other option than to tell the truth. When I made the decision to share my truth with anyone who inquired, I thought my world was going to fall apart. I was sure I would lose my identity, that my strength would evaporate along with my self-esteem and that people would no longer see me. They would see only a diseased, weak, helpless individual. Last August I fell over in my garden and broke my right foot. Two years prior to that I fell face forward on a sidewalk and broke my right rib. And 18 months prior to that I finally received treatment for a long-time broken bone in my foot. This all happened after a major relapse in 2010, leading to a month-long stay in the hospital, intravenous steroid treatment and a highly aggressive physical therapy regime to get me walking again. Conveniently (for me and my lies) this relapse occurred just nine weeks prior to a move cross-country. So while I was forced to tell friends in New York about my MS, nine weeks later I moved 2,500 miles to Seattle. I showed up in Seattle, stubbornly without my crutches, and I didn’t have to tell a soul that less than eight weeks previously I had been using a wheelchair. That worked pretty well. I made new friends, I found a new job, I found a great MS clinic and I quietly and privately managed my disease. I even set and met fitness goals. One chilly Pacific NW August day I swam the 2.4-mile span of Lake Washington. I started new medications. One caused excruciating and debilitating stomach pains, diarrhea, vomiting and full body rashes. Another resulted in a night in the hospital after my heart rate dropped dangerously low. And of course, I managed the daily ups and downs of fatigue, cognitive failure, vertigo, periodic incontinence and various states of disability. The lengths I went to and lies I told to avoid telling anyone I had MS were exhausting. I ghosted out of parties so I wouldn’t have to explain why I was leaving early. I refused invitations for weekends in summer homes because I was afraid the sleeping arrangements would prevent me from obtaining my prerequisite nine hours a night, and I just failed to show up for social events to which I had committed – it was easier to not show up and deal with the reputation of being a flake than to explain I had MS. In August of 2015 I sat at home with a broken foot and yet another pair of crutches and I came to the realization that even after my foot healed I needed to use a cane. My doctors had been warning me for years about the risks I was taking by walking without assistance, but I had stubbornly refused to accept I needed help. After the fall, my fear of serious injury became terrifyingly real and my MS became present in my day-to-day life in a way it never had. In an instant, I felt suffocated by my disease. I was bewildered by its oppression on my daily routine and its control of my thoughts. And for the first time I was blinded by the burden of my potential demise from MS. A quarter century’s worth of lies caught up with me as I was forced to accept a new reality: the reality of MS being part of not just my life, but the life of everyone with whom I interacted. I could think of nothing more abhorrent. By hiding my story I hid my true self. You cannot live a lie for 25 years without paying a colossal personal price. The longer I told my lies the more they fed and the deeper my fears became. I constantly questioned my experience with MS, and underlying it all were two fundamental questions: “Are you doing all this for attention? Do you really have MS?” These thoughts were pervasive, even when lying in a hospital bed being pumped full of steroids unable to walk, I still questioned myself and my diagnosis. Those lies did not want to relinquish their position at the top of my emotional hierarchy. My lies were fat and happy, they had a cozy symbiotic relationship with my psyche and they did not want to give that up. Just the idea of purging them created a profound crack in my reality that sent me hurtling to the bottom of a deep dark lonely hole and I believed that was where I would live for the rest of my life. I was isolated, terrified and completely lost. It was without doubt the darkest time I had experienced in my 27 years of living with MS. The depression was crippling, and I could focus on nothing but my weaknesses and the devastating and irrevocable effect that telling the truth would have on my life. I knew that life would never be the same. And I was absolutely right. My life changed. Sharing my MS story was an epiphany — I was quite literally the hackneyed cliché of metamorphosis from caterpillar to butterfly. And every day that goes by that I embrace my MS, instead of denying it, my wings get fuller and more beautiful and I soar a little higher. Today I tell my story to anyone that asks. I am proud of my journey, I am proud of the person I have grown into and I am proud I am walking tall and strong (at least metaphorically). My story is inspirational, and telling it does not make me appear weak or lazy or taking advantage of my illness – it makes me strong. I want the world to know that people like me, with a disability, bring incredible value, wisdom and humor. We are not to be pitied for our affliction or lauded for our courage in overcoming all the odds. We are to be admired and respected for our personal journey. We have good days and we have bad days. We worry about our health, we worry about our retirement plans and we face the future head on, which is as unknown for us as it is for everyone. I thought that sharing my story would be the beginning of the end for me and my “normal” life. In fact, it marked the beginning of my life. I lived a lie for a quarter of a century and now I am living my truth. Without a single doubt, it is the most powerful choice I have ever made and it has changed my life for the better. I redirect the energy I was using to hide from my MS into facing my disease head-on. And that feels good. I feel emotionally stronger than I ever have in my adult life. I know who I am. As time goes by, I am learning to appreciate the role MS has had in shaping me, in making me incredibly strong, resilient and tenacious. After living with the unpredictability and devastation of a chronic illness for the majority of my life, today there isn’t much that can throw me off course. I feel like I’ve seen it all and done even more. When challenges come my way, I think, “You have no idea what I have done in the past, you have no idea what I have overcome to get here. Do you think this is going to stop me?” Don’t get me wrong, MS is a horrific incurable disease – a life sentence – and it impacts my life every single day. There is no escape from it. But it is a source of internal strength. I have lived with MS for 9,855 days, but MS has only lived with me for 270. Today, I dwell on living my best life, sharing my story to help others who are hiding and constantly challenging myself and others to embrace the truth of who we all are. We want to hear your story. Become a Mighty contributor here.