Living with Multiple Sclerosis
By Stephanie Shaia | Photography by Sohail Chouhan
A river cuts through rock, not because of its power, but because of its persistence. —Jim Watkins
We live in a world of instant gratification. We tend to take the quickest, most direct path and appreciate the destination more than the journey. For me, a direct path has not been an option. I know exactly what I want to do, am excited to start my career, but still have been in and out of college for eight years. I have a chronic disease. My body rarely works like it’s supposed to. Overall, I am healing and improving, but it is taking years to become fully functional again. I had to learn to enjoy the journey. Hopefully my story can help you do the same.
Before I was sick, I was that overachieving kid that did everything. I led multiple extracurricular clubs, played clarinet and saxophone, was in color guard with the marching band, played softball, and made As in all my classes. That’s just who I am; I like being busy and active. In 2007, everything changed. My body couldn’t keep up. I was sixteen years old, and it was the summer before my junior year of high school. I developed extreme weakness, severe muscle spasms, cognitive and memory problems, visual disturbances, and pain. In December of 2007, I was diagnosed with malignant multiple sclerosis (MS).
The doctor told me I should not expect to walk again. He also said that we would do everything possible to stop the disease progression. I’ll spare you the details of all those treatments—suffice it to say that I was lucky. In 2011, my disease was relabeled from malignant to benign. From a neurology standpoint, the disease is inactive and expected to remain that way; unfortunately, some symptoms have continued.
The one thing that has been consistent is inconsistency. There are good days and bad days, and even good hours in the middle of an otherwise bad day. There are months when I feel better, and months when I feel worse. What I find most challenging is that I never know how I will feel when I wake up or what I’ll be able to do each day. It varies dramatically. Some days, I can run a mile, and my brain is alert and works quickly to do any type of schoolwork. Other days, I’m the equivalent of a pile of Jell-O melting into the couch.
Overall, I am healing and improving, but it is taking years to become fully functional again.
I go to a functional medicine doctor for treatment. If you have any type of chronic condition, I highly recommend checking out functional medicine. It is a perspective that looks at the whole body, rather than any particular system. In my case, neurology dealt with the damage happening to my brain, but neglected the root cause of why I got sick in the first place. That’s where functional medicine has come in. For the last year or so, I’ve been treating a very stubborn mycoplasma infection and working to balance gut health and correct a candida overgrowth. Again, if you have any chronic condition—particularly fatigue, fibromyalgia, or an autoimmune condition—look into these things. Treating these often-ignored factors is making a huge difference for me. But, as I said, it’s a slow road.
Now, let me be clear; I am not a spokesperson for everyone with MS. Every patient is different, and my case is unusual in many ways. The important part of my story—the part I want you to take note of—is that I have been sick in varying degrees for over nine years. I definitely will not cut the rock by power. I am not on the standard, direct path, but I am determined to achieve my goals with persistence. Perhaps it’s even better this way.
If I had completed college on a standard four-year plan, I would have stayed at my first school. It was a fantastic school and I loved it, but I did not learn until my sophomore year that the course work in my major was not as strong as it was at other schools. I am an exercise science major. It is just as rigorous a major as biology or chemistry, but we focus on the effects of exercise on the body. Right now, exercise science degree requirements are not standardized from school to school like most health professions; the field is growing and in a transition period. For students, this means we need to search out academic programs that offer the specific course work we want. The first time I withdrew from school to take recovery time, I decided that, since school was going to take longer than planned, I would make sure it’s worth it by getting the best, most comprehensive education possible.
I went home and regained some strength. Then, I transferred to a school that is supposed to be the best one for exercise science in the country. The course work was great, but the school’s attitude was problematic. They knew I had MS, but insisted I take a full-time course load. Halfway through my first semester there, I became sick again. The disability office was of no help, so I finished the course work I could and then moved. I ended up finding my current school, where I found a similar class lineup, as well as professors and a disability office that support me in any way they can.
I have learned a lot of lessons along the way—lessons I could not have learned had I taken a different path.
I have learned a lot of lessons along the way—lessons I could not have learned had I taken a different path. I’ve made contacts in three different regions of the country and have been exposed to multiple professors’ interests and specialties. All this experience will add up so that, when I do finally graduate in May 2017, I will be more marketable and have more knowledge and experience than many other new graduates. Not to mention I’ve gained plenty of personal experience in my field by dealing with my own body that I will later be able to apply to my clients. The journey is what prepares us for the destination.
Still, some days, it’s easy to wish things were different. I admit I get frustrated when there is so much happening around me that I can’t do. One thing I firmly believe, however, is that everyone deals with some type of challenge—maybe it’s financial, maybe it’s emotional, maybe it’s disease or injury. Everyone, at some point in life, will face something difficult and beyond their control. When that happens, it is important to find the things you can do and not to dwell on the things you can’t. There is no point in trying to compare your problem to someone else’s. Figure out what is important to you, set realistic goals, and work toward them. Even if you can’t achieve the goal as quickly as you want, you can still achieve it.
When I was a child, my parents always told me to do my best. I could earn an A or a C and they would be equally proud, as long as it was the best I could do. I am grateful to have been raised that way. Every person’s abilities are different and we all have strengths and weaknesses. Do your best and do not compare yourself to anyone else. Your goal for finding happiness is likely completely different from mine. Trust your intuition; it is your best guide. Some days you work hard, and some days you need to rest and take care of yourself. Balance is important for everyone, and even more so when dealing with disease. But I know that if I can do it, you can do it. Find value in the journey—persistence is the key.
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