“Jay, you have Multiple Sclerosis.”
Those five words were uttered by my doctor in May, 2010.
I knew they would change my life forever, I just had no idea how.
After hearing of my diagnosis I didn’t know what to do. I called my wife. I called my parents. I called my boss. I called my best friend. At that very moment all I needed to do was talk and cry because, just like most of the world, I had no idea what MS was and what it meant to have it.
That day I had a meeting with my doctor to start asking questions. The very first one was “is it hereditary?” Oh, yeah, did I mention this happened while my wife was pregnant?
Over the next days, weeks, and months I started to tell a small and carefully selected group of people about my diagnosis. I asked and answered so many questions. I started treatment including a round of steroids for the short term, and a drug aimed at keeping me from feeling the impacts of MS.
Let’s get back to that in a moment.
The reason for this blog, and the genesis of my crusade is awareness. Nothing more, nothing less. I don’t want anyone to feel sorry for me. I want people to know about MS, what it does, what it doesn’t do, and what you can do to help.
I have what is called relapsing-remitting Multiple Sclerosis. MS has no cure.
Without getting too technical, it means I have a number of lesions on my brain (MS, loosely translated, means multiple scars). Others have these lesions on their brain and their spine. By relapsing-remitting, it means I could have “relapses” or “flare ups” of my symptoms. I get tingling and numbness in parts of my body. I get crazy headaches. I get muscle spasms in my legs. But like many other things with this disease, those symptoms vary from person to person.
Thankfully, to this point, that’s as bad as it’s gotten for me.
I live a normal life with my wife and my baby girl who is about to turn five years old. Have I had to make changes? Of course. I left my career in television news because stress is one of the triggers for an MS relapse. While it isn’t brain surgery, the TV news business has a very high stress level. I have to avoid other “triggers”, such as avoiding extreme heat for extended periods of time (thank God I live in Wisconsin), and I tend to get tired faster than I used to. I am supposed to be eating healthier and getting regular exercise. MS can lead to muscle decay, so my doctor told me “use them or lose them”.
The biggest change is the drugs. Once a week I stab myself with a needle. My therapy of choice is a drug called Avonex. There are several options out there, but so far this has worked for me. And as the wise scribe The Fresh Prince penned in his hit song Summertime, “if it aint broke then don’t try to fix it.” I was also sent to a psychologist and psychiatrist because one of the side effects of the drug, and the disease in general, is depression. I am on both an anti-depressant and anti-anxiety medication.
So I mentioned MS has no cure. But, at the same time, it is not a death sentence. When I told one of my friends about my diagnosis she sobbed uncontrollably, thinking I just told her I was dying. While it’s true MS attacks your immune system, it doesn’t kill you.
That phone call should have triggered something in me that it was time to spread the word about MS… but it didn’t. I wasn’t ready to tell the world about my illness/condition. Maybe it was selfish; at the time I didn’t want to be labeled or stigmatized. I was having a hard time not labeling myself, so I wasn’t ready for others to do it.
As the years have gone on, however, I can’t help but feel this is a calling. As I’ve learned about this disease I’ve also learned how little most people know about it. I have been a communicator my whole life, personally and professionally. Now I’ve taken that passion and turned it towards trying to get people involved in, and informed about MS… so someday, maybe, there will be a cure.
So if you’re reading this, if you’ve gotten this far, I have a simple request: learn and spread the word. If you have MS, know someone who does, or haven’t the slightest idea about the disease, do a simple Google search. Take a few minutes to find out even just one thing about MS. Then tell someone about it. Maybe post a link on Facebook or Twitter – 140 characters can lead to change. If you have questions, ask. Ask me, ask the NP (shameless plug), ask a doctor… just ask.
“Jay, you have Multiple Sclerosis.”
Those words mean something much different in 2015 than they did in 2010. It’s because I learned, and asked; and it has led not only to answers, but the opportunity to meet some amazing people with amazing and inspirational stories.
Hopefully my story can inspire at least one person to do the same.