PERSONAL STORY BY JONATHAN KOHANSKI
CHRONIC RUMINATIONS A STORY OF THE SILENT STRUGGLE
I had gone out one night over the fall with someone (I’ll call her Paula since I don’t know a Paula) and was meeting her for the first time. Maybe it was pride, stubbornness, or an insane belief that even after 17 years with MS, that I was just like everybody else. Whatever the case may be, I wanted to look and feel “normal”.
I was meeting Paula to see some music and as open as I am about MS, and my life in general, don’t want to appear that I am somehow extra work, a liability, or burden. As I stumbled a bit, trying and having trouble navigating an uneven sidewalk at night, Paula, almost instinctively, grabbed my arm to help steady me, it was a pretty embarrassing moment… 42 years old, unable to let go of my pride, make the right decision, and use the cane. Great first impression, and great attempt at trying to feel normal.
March is MS awareness month. 17 years ago, at the age of 25, my MS diagnosis was hard to come to terms with. Here was a disease that literally appeared overnight for me, hiking one day and then barely able to walk unassisted the next. It doesn’t get much faster than that and my life morphed overnight like I was in the twilight zone. My balance was now gone, never to come back completely.
Doctors continue trying to unravel MS and as much as they know and have learned, still can’t predict, and ultimately tell patients, what their life is going to look and be like in the years ahead. 17 years of visits to neurologists and MS clinics and I can tell you exactly what could happen, I’ve seen it with my own eyes and what could happen isn’t the scariest part of MS for me. As I get older, as the disease progresses and symptoms worsen, what scares me most is the prospect of potentially relying on others to help me. It’s my fear of being a burden.
MS can be an extremely isolating disease, it limits hobbies, where I go, the activities I do with people. MS is embarrassing, it leaves me feeling like I’m being judged, that my own worth has somehow been diminished by something I have no ability to define, control, or fix.
At 25 I was upset about my diagnosis, upset about the lost potential, normalcy, my physical abilities. MS has changed my life and lead me down paths that I likely wouldn’t have gone down otherwise. I’m happy with who I am, but do I still struggle? Every day. I struggle physically and mentally.
There’s nothing that can really prepare you for the changes. Even after 17 years, the lessons keep coming, people come and go, the mental health aspect (of the chronic illnesses, MS has the highest rates of depression, around 50%), the perpetual uncertainty, the fear and anxieties, or infinite desire to feel normal again. Behind the smiling and laughing there’s a silent struggle that I’m not sure anybody can fully understand until they have to live it as well.
85 AWARENOW / THE RISE EDITION
www.IamAwareNow.com