By Craig Chomiak
My journey with multiple sclerosis (MS) started in 1992 with paresthesia or a tingling sensation and numbness in my chest while traveling on business in Louisiana, just months after college graduation. At first I thought it was a reaction to shellfish I had eaten the day before, but it didn’t go away and then spread through the rest of my body, right to my fingertips and down to my toes. Neurological tests, a spinal tap, and a brain MRI led to a diagnosis a few months later — relapsing-remitting multiple sclerosis (RRMS), a common form that affects 70 - 75% of all MS patients. RRMS is characterized by sudden attacks or flare ups, followed by partial or total recovery. This initial MS attack was very uncomfortable, felt like pins and needles, and when walking I wasn’t able to feel the ground, sort of like sponges on the bottom of my feet. In these early years the simplest of everyday tasks, like buttoning a shirt or opening an electric window with a finger and flipping a coin into a toll booth basket were very difficult to accomplish. And with this attack, and each attack thereafter, I personally never went back to my baseline health. Over the years my symptoms remained on a similar theme of loss of sensation and balance, bouts of vertigo, fatigue, and a continual loss of strength in my legs.
slow silent loss that most don’t see
As a child growing up in northern NJ, my athletic identity emerged as an important part of me. Just like a facial feature or skin color that is a very recognizable identifier, so was my natural athleticism. This identity followed me through the best and worst part of my life and was something that I could count on. In high school, setting a track & field school record for the half mile, county and state rankings, being captain of the track & field team, and being selected as “Most Athletic” by my senior year class gave me a sense of accomplishment; participation in team sports like soccer delivered a network of friends and belonging; and downhill skiing got my adrenaline going and satisfied my drive for extremes and being the best. After the glory days of high school passed, I added some recreational softball for fun with friends and colleagues, mountain biking, hiking, and snowboarding. So when I was dealt this diagnosis at 22 years of age it took everything in me to fight a slide into a worst case scenario thinking that many aspects of my future will be enormously challenging. I made a different decision because being athletic and enjoying the outdoors was just too precious to give up. So my only option was to beat this disease and through the next decade I kept my favorite sports and activities going — softball, running, snowboarding, mountain biking, and hiking. These activities took on new meaning for me. They became my way to physically and mentally defy both the mental weight of my MS reality and my doctor’s expectations of what was to come — a lifelong sentence of debilitating bodily functions. Slowly and steadily over the next 29 years post diagnosis, MS has taken away my ability to participate in most of these sports and activities that had previously defined me and been my lifelong bedrock.
progression despite my best effort
In the year 2000, eight years after diagnosis, I made a decision to start a disease modifying therapy (DMT). The goal was to reduce the number of relapses or acute attacks, delay progression of disability, and limit new disease activity. I had done a ton of research and knew that the disease was progressing. For me the symptoms toughest for me to deal with were weakening of muscle strength in the legs, which makes walking even short to moderate distances difficult; sporadic foot drop, which causes me to trip while doing simple errands; balance problems; and bladder issues, which affectionately earns me the notorious label of “bladder boy” with close family and friends. In addition, I have widespread muscle stiffness and spasms, and bilateral hip and leg pain. Since that first DMT, I am now on my fifth one because the previous four therapies were either no longer effective or were found to not be effective at all. Two years ago I began Lemtrada, a DMT with promising clinical results in slowing down disease progression while improving walking speed. Since then my two previous MRI’s showed no new disease activity which is fantastic news, and my body has shown no significant increased impairments, which is again fantastic. And the fact that I am just generally getting older, like all my lifelong friends, doesn’t help matters. Not that aging is a competition but if it were — in some strange way I am just ahead and winning the race ;). Previously there would be periods without many symptoms but it’s much more constant now. Some days I need to use my walking cane for stability, which Carrie tells me makes me look distinguished, and occasionally use my handicap placard at the parking lot when going shopping or to dine, and whoever is in the car with me sees it as a VIP bonus. I put all my physical, mental and spiritual strength into slowing my disease down and I truly belive that all this effort has worked. After all, I’m approaching 29 years since being diagnosed with MS and many of my doctors are still surprised about how well I’m doing.
hope for a cure in my lifetime and love from many
I don’t keep a thankful journal each morning like my wife Carrie, but if I did, then my amazing support system of carefully curated friends and family would be on it each day. In 1995 I met Carrie Nolan from Clark, NJ at a party in Cranford, NJ. Two years later, she became my wife and we started our lifelong journey together. In 2002 we had our first child, Ella, and 2 1/2 years later came our second daughter, Lucy. For me having grown up in a loving, supportive and happy family, including my parents Alan and Claire, and two brothers Scott and Todd, I had always assumed I would have a family of my own some day. My diagnosis at 22 had me questioning whether anyone would want to share a life with someone having this prognosis. I am fortunate and thankful to have my life partner by my side and two of the most loving daughters in my corner. In addition to Carrie falling head over heals in love with me at first sight ;) in 1995, Carrie joined my growing Walk MS family, and the already well established Walk MS team, Luke SkyWALKER and the Wookies. Through the years, this incredible team of family and friends have evolved, some people have been there from day one and others flowed in and out each year, we have made several strategic moves to different walk locations, and we have always had varying levels of celebratory post-walk gatherings — family reunions of sorts. It all has provided me with the inspiration to keep going, keep experiencing, and keep fighting. Hope is powerful, support is critical and love is mandatory when fighting any illness, including the chronic illness of MS. Its different for everybody and everybody experiences it differently. This fight to end MS and repair the damage caused by it forever is my personal quest. And this group of incredible people is my life support. Although not always easy, I try my best not to mourn what I might have lost or what I thought I was going to be doing, and instead I celebrate what I still can do. I look forward to and focus on what I can do with optimisim. None us know what tomorrow will bring so the message here is to live and appreciate today — this is my everything and with the abundant love around me I will keep moving forward.