Let the roller coaster begin
I am an eternal optimist. I truly believe that someone’s rainy day can be my adventure and that there’s no situation so bad you can’t find a silver lining. However, in order to remain positive there is also a time and a place for a little realism. So here is the undiluted version of my battle with Multiple Sclerosis.
I’ve read countless stories of individuals with inordinately long, drawn out diagnostic processes. While I can’t imagine living with such unknown, my story falls on the exact opposite side of the spectrum. My life changed in the blink of an eye two weeks after my 25th birthday. The funny part about that age number is it’s around the time people make jokes like “Oh, that’s when the body starts to break down” “Welcome to the other side of your 20’s”… all in good fun, wish they had been less right.
I had just begun my 3rd and final year of my graduate degree in Physical Therapy, walking to class with some good friends. I started to notice that the field of vision in my left eye was obscured, as if a spider had woven a cobweb over it. I could not see. Around the same time I had been having bouts of vertigo lasting extensive periods of time. Vertigo is generally transient and this was a daily, all hour’s sensation that made me chronically feel like I was on a carnival ride, uncomfortable lighting and all. I remember playing basketball one day and missing wide open, easy passes because the court felt like it was moving and I was not moving in the right direction. I know I know, who plays basketball with vertigo, but at the time I didn’t know anything major was wrong and I’m stubborn to a fault. Anyways, also in this short time span I began to notice my right leg felt numb. I was shaving in the shower one day and the sensation from the left leg to the right leg was completely dulled in comparison, I could barely feel the razor on my right leg.
Looking back, I really should have known better. In PT school we are inundated with red flags to look for when a patient comes into a clinic. On paper, a female in her mid-20’s with blurred vision, vertigo and unilateral numbness is a pretty straightforward diagnosis or at the very least a sign that something is seriously wrong. It’s very easy to have blinders on when it comes to yourself. How could I imagine I would develop a degenerative autoimmune disease in what felt like a split second? Hadn’t I just been celebrating my birthday, carefree, no major responsibilities? 25, you are one hell of a curveball.
I saw two different eye doctors who couldn’t tell me what was wrong, only that something was wrong. The 3rd doctor I saw was a neuro-ophthalmologist. I was still operating in denial and figured this appointment would be much like the other two, no major news. I went alone. Disclaimer, don’t go to doctor’s appointments alone. Even if you think its nothing, it’s still comforting to have someone by your side, lesson very much learned. The people in this office seemed to understand what was wrong with me before even performing a single test. They started running through a classic neurologic exam. I should mention the final semester of PT school is a neuro intensive curriculum. So, I’m watching the doctor perform the same basic tests I’m familiar with, but now with me as the patient. I remember watching his face as he’s pointing out positive elements to his resident and they’re both nodding knowingly to each other. Three hours of tests later, eyes so dilated I can now barely see, the doctor sits me down with the most straight-laced tact, or lack thereof, and says, “I’m 90% sure you’re exhibiting signs of Multiple Sclerosis at the brain and two levels of the spine, I’m going to send you to the hospital for 5 days for further testing, we need to start you on immediate high dose steroids to prevent further damage, you should call someone”. Just like that, in the blink of an eye, my life changed.
People often asked me what it felt like to hear those words, so suddenly to watch your world change. The best way I remember it is through blurred eyes, literally and metaphorically. It didn’t feel real and I didn’t spend time dwelling on it. I called my parents, who live a 12-hour plane flight away. I can’t imagine what this phone call must have been like for them, but they were in the country within 15 hours, so I think that speaks for itself. My time in the hospital was a 5-day, drug infused blur. It still shocks me I was able to remain composed through this process, just days earlier I was a regular kid going to class, stressing about exams. Now I was a live case study for my class studying neurologic diseases. I was immediately started on high dose steroids, not the performance enhancing incredible hulk kind, the exact opposite actually… the kind used to treat acute inflammation, or as I’m now more familiar with “MS exacerbations”. As much as we learn in school about medicine, nothing prepared me for this. Words on a page and 1000mg of steroids coursing through your veins are two very different things. Try remaining calm on this dose of steroids in a normal situation never mind this alternate reality I’d been thrust into. In addition to this I had MRI’s of the brain, cervical, thoracic and lumbar spine. Trust me, for an active, restless person… 4 hours in an MRI machine is pure torture. Countless visits with hospital staff… attendings, residents, interns, nurses and most comically a physical therapist. This remains an incredibly difficult time for me to revisit in my head. It’s so surreal to comprehend that I had JUST played full court basketball a few days ago, and now I’m being escorted in the hallway to see if I can walk independently.
Five days later, blown up from the amount of steroids/various drugs they’d pumped me with to “reduce inflammation” (there has to be some irony in this, I’ve never felt more “inflamed”), two lumbar punctures (I can’t detail this experience because the size of the needle alone is traumatizing to think of) and MRI results riddled with what my then neurologist termed “innumerable lesions” of the brain and spinal cord, and I was allowed to go home. I wasn’t given a definitive diagnosis as they awaited lab results, but by the end of my five days in the hospital with words like lymphoma and ALS being thrown around, I was pretty much praying for MS (imagine that for a best case scenario). I work in a hospital right now and I’m truly in love with what I do as a clinician, but to have the roles reversed, to be 25 years old as the patient when you’ve never been really sick in your life is a bit like jail. I would love to say a year and a half ago was my first and last flare up, but I’ve been through countless episodes as this disease has worked to stabilize that I’ve come to realize chronic illness is much like a roller coaster. Emphasis on the coasting, because it’s not like the sports I’ve grown up playing where the goal is to win. There’s no cure, you can’t “beat” it. I was officially diagnosed a month later, multiple sclerosis. Let the roller coaster begin.
Multiple sclerosis is a chronic degenerative autoimmune disease that affects the central nervous system with no known cure. That said, 30 years ago the major diagnostic tool for MS was something called the “hot bath” test, where they would literally put perspective patients in hot water, because heat exacerbates symptoms, and note reactions. Now in 2015, the diagnostic process is much more uniform and there are 10 FDA approved disease-modifying drugs that have shown great success in slowing disease progression. MS is no longer the death sentence it used to be described as, but that doesn’t make it any less of a life sentence. As I’m often reminded, “this is the best time possible to be diagnosed with MS!” Don’t mistake my sarcasm for ungratefulness. I am a silver linings person and I’m quite happy no one dropped me in a hot bath as a means of finding answers.
I often leave out the details of this story and skip right to the end game because despite this seemingly major challenge I’m still living my life on my terms. I still play basketball weekly despite being told that may not be an option, I refused to accept that fate for myself. I graduated on time with a clinical doctorate without taking anytime off of school (not advised, I’m stubborn). I’m still practicing physical therapy, albeit at a much slower pace than I imagined, in a setting I’m inordinately passionate about, impacting the lives of people walking in very similar shoes I recently walked in. I don’t pity myself and I don’t let myself off the hook, nor do I want anyone else too. However, I think it’s important for myself and for all individuals that go through each and every day living with a chronic illness to know that it’s ok to be open about your struggles just as you are your victories. They are equal components to the beautiful and challenging rollercoaster that is my life now.
A very dear professor of mine told me early on to embrace a new normal as a means of accepting the impact this disease would have on my life. I think I actually scoffed at her because I thought I was tougher than letting something like this “change” my life. Reflecting on this is amusing because my life is completely different than it was then. I trade off a lot of days wondering whether I’m the more relentless one or MS is. People often grieve loss with a 5 stage system, the final one being acceptance. I’ve found in order to stay sane with a chronic disease like MS, where you have to surrender a sizable amount of control and how you feel changes on a dime (seriously, I’ve gone from perfectly fine to so dizzy I can’t stand in a matter of minutes for no good reason), you have to go through the stages of grief multiple times. MS is a very cyclical beast and despite my sunny disposition I’ve learned it’s ok to not always be positive. Some days you’re angry, some days you deny how you feel because you want to be a normal care-free 26 year old, some days you’re bargaining with whatever higher power you pray to that you can trade fates, some days you’re inexplicably depressed by your situation and some days there is a calm acceptance. My whole life I’ve in some way defined who I am through a physical lens; basketball, the profession I’m in, my outward appearance, my ability to care for my patients and my loved ones. I’ve been wired to push through pain, that’s the theme in sports, no pain, no gain. Everything since being diagnosed has been shifting this lens without losing who I am at my core; slowing down so as not to make things worse, while continuing to actively and successfully pursue my goals in life.
Something you take for granted when you’re healthy and life is seemingly effortless, as mine used to be, is what it means to actually take care of yourself. People in their twenties are not usually saddled with this sort of responsibility. I’ve now entered into a world of countless doctor’s appointments, medications (AND their side effects), monthly drug infusions, alternative holistic treatments, diet modifications (this croissant lover is now gluten, dairy, egg and mostly soy free and must begrudgingly admit that it helps), etc treatment options are overwhelming, risky and endless. Do I play basketball when I’m not feeling great? If I push through more hours at work, will I be able to work for the rest of the week? What symptoms are so serious they warrant a doctor call? How do I remain present with friends when I’m so exhausted I can’t focus? Do people who don’t know much about me just think I’m lazy? Will I pay for stepping out of line? Everything feels a bit like a cost benefit analysis sometimes where each choice I make could impact my quality of life significantly. Like I said, my life changed in the blink of an eye.
Chronic illness is like joining this club that none of us would willingly choose for ourselves. You’re shipped off to battle even though you never enlisted in the army. I’ve read every story on this blog and continue to be blown away by the overlap each of us experience, be it the soul crushing fatigue or the immense frustrations that accompany living with an illness that’s very difficult to comprehend. If you saw me walking down the street I probably look like the picture of health. I don’t look sick. Most of the symptoms I experience on a daily basis are not discernible to the eye. I used to be frustrated that people didn’t understand what I felt like on the inside, suffering the silence is a very lonely business. Then I stopped thinking about myself and thought about the people in my life, my friends, my family, my world. Would I want them to feel what I feel? Not in a million years. Their quiet presence on my weakest days is enough to surround me with love and strength to get through just about anything. Whether they know it or not, I can’t do this alone, they have all been the light to many of my days. That becomes the beautiful part of all of this, that at the young age of 26 I’ve gained perspective to last a lifetime, people are what matter most. I’ve seen new sides of myself like a will I never knew I had. I fight like hell everyday for the life I want to live, for the good days, for the future I want. This is by far the hardest I’ve ever worked at anything in my life. I won’t settle for a status quo because we only get this one shot at life and I’m certainly not planning to squander it just because I don’t like the cards I was dealt.
Since being diagnosed, I’ve learned the true meaning of struggle, but also the true meaning of victory and success. I’ve found a voice within myself that may have otherwise remained dormant, advocating for a cause that a year and a half ago I knew little to nothing about. I’ve climbed 66 flights, twice, and raised close to $50,000 to work towards a world free of MS. I’ve met amazing people like Allie & Erica, the creators of this blog, who ironically went to my High School, and have created a safe space to begin an open dialogue about what it truly means to live with an invisible chronic illness. This umbrella term encompasses millions and millions of people worldwide and if I’m any indication then they are the people all around you. They’ve created a platform that affords a private person like myself to shed all fronts and have the confidence to tell my real story in hopes that someone will connect with my words and feel understood, the very feeling I felt reading the vivid words of the stories on this site. I continue to be inspired by the strength and resilience of the human spirit to overcome, to acknowledge fear, but keep moving forward. I had a coach who used to say that basketball was a game of peaks and valleys. You need to have more peaks than valleys in order to win. If that’s the case, despite all my valleys this year I consider myself a winner.