What I’ve learned from being diagnosed with a chronic disease

I always planned out my life. I knew where I wanted to be and who I wanted to be. And if I didn't, I made it up according to what was expected of me by others. I always had a 1-year, 5-year and 10-year plan which included goals to achieve and careers to pursue. My life was basically on auto-pilot as I strived to meet my own model of perfection: being a well-educated, high-powered entrepreneur with a loving husband, 2 kids and a dog with, of course, a comfortable home in suburbia.

My life never went according to that plan. I struggled constantly as if I were the round peg that so desperately wanted to fit into the square hole yet never could. I rarely stopped to look at what I had accomplished; only focusing on what I had not. When I was young, I wished to be older. As I grew older, I wished to be younger so as to have a chance to ‘do it all again’ so I could get it ‘right.’

And then, in the blink of an eye, life changed. And the question now was, “would I react to it or would I respond to it?”

One morning 7 ½ years ago, my typical mundane stressful life changed in a matter of mere seconds. What began with tingling in my right hand – which signaled the beginning of a migraine, or so I thought – subsequently led to the entire right side of my body being numb including the inside of my mouth along with partial vision loss in the left eye. Being a professional in the healthcare arena at the time, I was sure I had suffered a stroke.

I've never been one to ‘stand on the sidelines’ especially when it comes to my or my loved one’s health. Therefore I aggressively sought out the necessary medical advice and tests to garner a diagnosis. Within a three-week period it went from ‘you’re stuck in a migraine’ to stroke, brain tumor, and then possibly MS. There was a lot of speculation going on with many “let’s wait and see if it happens again” remarks being made. Well I don’t know about you, but I don’t do “wait and see” very well. So I kept pushing and landed at the U of C in front of a doctor who examined me and my test results as well as asked me an extraordinary amount of questions to which he seemed to already know my answers. After he stepped out of the room to look at my scans he then returned and uttered the dreaded words, “My dear, beyond a shadow of a doubt YOU have multiple sclerosis.”

That moment is embedded in my memory forever. My father sank into his chair, emotionally retreating. My mother started crying. My brother, a biotech guru, jumped into scientific mode asking a bunch of complex questions that I didn't understand. As for me, the room closed in around me. I was so sure the doctor was going to tell me I was fine. How did this happen? How was the doctor so positive? I was stunned, scared, frustrated and honestly a bit angry. All of a sudden I was jerked to back to the present reality when I heard someone say I could die from this. That got my attention and I interrupted all conversation, looked directly at the physician and inquired, “I can die from this?”

He explained that MS won’t kill me but side effects or complications from it could. Then he assured me that on medication I’d be fine. Little did I know at that moment ‘medication’ meant giving myself injections every other day for the rest of my life or until research came up with a better alternative. You see, MS can’t be cured by medication, radiation, surgery, chemotherapy… nothing. MS is a chronic disease that afflicts hundreds of thousands of people and there is no cure. It manifests differently in every person thereby making it difficult to pinpoint a cause. Research is resulting in better medications and an advanced extent of knowledge about the disease but no definitive cause or cure has been uncovered.

My next statement may surprise many of you and that’s a good thing because you’ll most likely remember it. MS was the greatest gift I ever received. You heard me. I consider this diagnosis a gift. OK, right now you’re probably shaking your head wondering, “Is she nuts?”

In my life prior to MS as I mentioned I was stuck on auto pilot. I had a high-powered, very stressful job that I didn't particularly like but I was good at it. My social life was so-so; a few good friends, many needy superfluous friends, and a couple of dates here and there. Much of my time was spent at the office and when I wasn't working I was too tired to do much else other than my usual daily workout, cook dinner, catch up on household chores, go to sleep and do it all over again the next day.

But within a year of the diagnosis I was laid off. With an abundance of free time on my hands, I began networking while trying to figure out what I wanted to do with the rest of my career. My next “move” was hopefully going to take me into retirement. However, with a new-found realization of how precious life is (thanks to my diagnosis) I decided that I needed a change – it was time to decide what I wanted out of life instead of doing what I thought I should as told to by others.

And so began my journey down the road that certainly would never have been traveled by me had I not gotten sick. With regard to career, I pursued my passion for wellness, health and an integrative approach to well-being through coaching. With regard to personal care, all of my nutrition, fitness, and spiritual practices had to adjust. Additionally I had to become my own advocate with regard to keeping track of all my medical information. And I fulfilled a life-long dream publishing my first book, Live in Wellness Now: A Proactive Guide to Living Well.

The most important thing I wished people understood about MS is that it’s different in every body. No two people suffer exactly the same. I also wish people understood the importance of being their own advocate, knowing their “numbers that matter” (e.g. cholesterol, blood pressure, C - reactive protein, and vitamin D), and the roles that nutrition, fitness and spirituality play in keeping them well. And most importantly, I hope people with MS and their loved ones recognize the gift within this adversity thereby fighting it all the way (responding) instead of being victim to it (reacting).

In conclusion, people often say, “We plan, God laughs.” Well, I am evidence that planning doesn't always turn out as intended. You need to keep a sense of humor and be able to laugh at yourself. Life is not something to be taken too seriously. It is something to be valued, enjoyed, cherished and respected for the joyous remarkable gift that it is. Most importantly, by responding to any situation in lieu of reacting, you empower yourself to be in control as much as is possible. And that’s a wonderful feeling!

Be Present | Be Purposeful | Be Well