My Personal Hurricane

By guest blogger, Nora Kb

Many people speak of being in and out of doctor’s offices for years before receiving an MS diagnosis. This, I suspect, can be frustrating and confusing. No answer can be more of a burden than uncertainty. I got my diagnosis in a more unconventional way, and more quickly than most.

The tingling ignited in my left side on a Thursday in June of 2013. By Friday afternoon, I was in an urgent care facility and they were sending me to the emergency room because of some “troublesome neurological symptoms.”

At the ER I underwent an MRI and a spinal tap. I was then sent home with instructions to return Monday for further tests unless things got worse. Spoiler alert: things got worse. On Saturday I returned to the ER with increasing left side weakness and by Sunday evening I was undergoing an emergency brain biopsy. Within several days, I’d lost all use of the left side of my body and gained a mouthful of a diagnosis: acute sudden onset of tumefactive multiple sclerosis.

I’d spend the next 6 weeks in the hospital recovering from this acute initial exacerbation and coming to terms with the onslaught of emotions, fears, and uncertainties that accompany such a diagnosis.

My family was drawn closer, my priorities re-evaluated, my lifestyle overhauled. I changed my diet, quit smoking cigarettes, and started considering periods of continued movement a privilege and a luxury rather than the chore I’d previously assumed exercise to be.

I ran (figuratively, of course)  the gamut of assistive devices – wheelchair, four point cane, single point cane, AFO – and as my exacerbation slowly subsided and my mobility returned, I was fortunate enough to be able to set all these aside. Today I’m back on my own two feet, and I’ve never been more grateful to have a functioning body.

After I was first hospitalized, my overwhelming emotions were fear and confusion. I knew very little about MS. The sum total of my knowledge was that the mother of a childhood friend had it and was severely debilitated by the disease, and that a former high school coach had it and only needed minor accommodations to manage her disease. I didn’t know really what it was, who it hit, or what was in store for my future. My severe presentation forced me to take a break from my graduate studies in library science. So, without schoolwork to keep me occupied mentally, I set out to do some different research, namely, what is this illness, and how on earth am I supposed to deal with it?

Finding the National MS Society went a long way towards building a semblance of understanding. I also started a blog while I was in the hospital. The main intent was to give me an outlet for the storm of emotions that was swirling in my head but I also used it to ask for help from anyone who could assist me in taking on, and coming to terms with, this new challenge.

I reached out to my online communities and found that talking to others diagnosed with MS helped me to further understand and accept my condition. My informal online support group gave me information that went beyond the clinical, and forging friendships with people who’d already been through the MS wringer before eased some of my anxieties regarding what was to come. My life, I learned, was far from over – I was just going to travel a different path than the one I’d previously envisioned.

When asked to write a blog for the MS society, I was initially wary – who am I to pretend expertise when I’m not even a year into my MS experience? Then I thought back on to the days and weeks right after my initial diagnosis, and I remembered the comfort I’d found in reading stories similar to mine. I recalled the camaraderie I’d felt in sharing experiences with my MS peers. I finally came to the realization that there is much strength to be found in community.

Now, almost a year after my diagnosis, I am proud to be able to give back to the MS community by sharing my story and insights into living with MS. I don’t pretend expertise – I am still just another traveler on this road that winds around through the traumatic and the triumphant in equal measure, but I’m glad for the opportunity to assist others along the way. It is not an easy road by any means, but I have found that facing with the support of others makes the trek far less arduous.

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Nora is a 27 year old Oregon native currently pursuing a Masters degree in Library Science at Emporia State University. She was diagnosed in June 2013. Read more from Nora on her blog, msnorakb.tumblr.com.

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